Some Girls Prefer Carnations

Lessons from the radiology waiting room

2012-03-09T22:52:00.000-06:00

While I was sitting in the radiology waiting room on Monday waiting for my toe x-ray, an old old man engaged me in conversation. His wheelchair plus oxygen accessories were overbearing, nearly obscuring the small figure among them. He was thin with translucent skin, and his thick white hair remembered the shape of the pillow that was recently beneath the right side of his head. His oxygen pump breathed in his lap. When he spoke, it was with a high, reedy voice that was accustomed to complaining. Indeed, before our conversation I observed him arguing with his caregiver about being 1.5 hours too early and how he could better use that time.

He said I looked familiar and inquired as to my place of work. It turned out that I was not the person that he was thinking of, but we discovered something else in common: his father worked for 35 years at my current place of work, as a heating and cooling specialist. We visited about this for a few minutes, but his name was called 1.25 hours ahead of schedule (never have a I heard a more sincere "Halleluja!") and he was pushed away.

This short interaction inspired so many thoughts.

I thought a lot about his hair. At first I thought how unnatural it looked for someone so old to have such a generous helping of hair remaining on the head. Then I thought about the hunk on the side that was sticking straight up. I thought what a shame it was that none of his caregivers had the time or inclination to force that piece down before he went out in public. However, my perspective on this rowdy lock changed as he spoke. He was so present, so coherent, so with it--perhaps he didn't want anyone to comb his hair that day. Perhaps he never wants help with anything. Or maybe he just doesn't give a hoot if there is a piece sticking up. Indeed, what if he's proud to have so much hair that he flaunts the unkempt look to draw attention to it?

Then I thought about his complaining to his caregiver. At first I had antagonistic thoughts towards the caregiver, thinking that she shouldn't make a helpless patient sit somewhere for that long. But then I thought about how important it is to be a patient with patience, especially after I learned that he was coming from another appointment in another wing. An hour and a half isn't that long; where are you going to go and still have time to get back? Plus, what is the sense in leaving if you're already there?

After he was wheeled away, the caregiver returned from the soda machine, befuddled by his absence. I explained that he was called back ahead of schedule. She expressed relief, saying she had thought about heading out on her own for 1.25 hours and returning in time for his appointment.

Now I was back to feeling antagonistic towards the caregiver, imagining my new friend being ditched in the radiology waiting room against his will.

I found my series of disparate opinions to be quite interesting. Before I became such an experienced patient, I think I wouldn't have given this man and his situation much thought. I would have defined him with some cliche like "old and cranky". I would have felt sorry for him for not being cared for at a level high enough to have his hair combed.

Now I saw more complex possibilities for his definition. Maybe he had been in the hospital overnight unexpectedly, and now he had yet another frustrating appointment to delay his homecoming. Maybe he's such an impatient patient that the caregiver schedules all of his appointments in one day so that they don't have to go to the clinic as often. Or maybe he simply doesn't see the point in combing his hair.

I enjoy visiting with people in the various waiting rooms. It's a good chance to know another being for a fleeting minute, a minute that could impart lessons for a lifetime.

Get with the program, Toe

2012-03-06T22:12:00.001-06:00

I met with Dr. Oncologist on Friday to discuss the results of the colonoscopy. She too was delighted that there was nothing to biopsy. My elation faded, however, when she answered my question, "what happens if my colon is still glowing on the next PET scan?" She said that that is when things get more complicated. Either we continue to watch it, or if the region has increased in metabolic activity there might be some exploratory gut surgery in order. Ugh! I don't actually believe that this will be the outcome, but one never knows, does she? So we'll just hope that the glowing colon will go the way of the glowing spine, lungs, and chest wall and stop glowing in time for the next PET scan.

My next PET scan is at the end of May.

In the meantime, a body part from the peanut gallery has decided to participate in the post-cancer fun times. I have been having an issue with the big toe on my left foot. I wasn't even going to mention it in the blog, because I thought it wasn't cancer related, but the podiatrist has mentioned certain possibilities that close the gap between my big toe and cancer. Gulp.

One day before we left for Santa Fe, I noticed that my big toe was hurting around the nail bed. I thought nothing, literally nothing, of it. It's a toe. Also, sometimes things hurt periodically and then they stop hurting. Right? Surely you all have experienced some random pain somewhere in your body, and you don't know what caused it, and when you wake up the next morning it is better if not resolved entirely. This was me and my toe.

Well, in Santa Fe it got worse: redder, angrier, more painful. ("More painful" is not a comment on the pain level itself, just a comment on an increase in pain. I was not limping or anything). So I soaked it in epsom salts and smeared neosporin on it. No resolution. As a side note, it is not an ingrown toenail because 1) I have good toe hygiene! and 2) the reddness is around the nail plate at the base of the nail, not the sides of the nail. Also, there was no injury or incident that I remember between me and my toe.

Darn it if the thing hasn't been getting worse. The pain has stayed at the same low level, but it is now a little bit black-and-blue under the nail bed while being red and inflamed on the nearby skin. I took my audience with Dr. Oncologist on Friday as an opportunity to get her medical opinion on this 2-week-long toe issue, and she in turn sent me to Dr. Podiatrist.

Dr. Podiatrist has an excellent bedside manner, a soft spot for microbiology, and a gift for explaining the possible causes of and outcomes for my problem. In short, I am a fan. (Why couldn't HE have gone into gastroenterology?) Unfortunately, my toe doesn't fit any textbook phenotypes, so he couldn't make a conclusion without a biopsy. We agreed that it is a bit too soon to rush into a biopsy. So I am on a course of antibiotics in case it is an infection, and I am to watch it for changes.

And here's where the connection is made to cancer: his concern is that it could be a melanoma (skin cancer) that just happened to develop under my nail bed. It happens, albeit rarely. So if it suddenly becomes irregularly shaped or continues to increase in size, a biopsy of my toe and toe nail is in order. I forgot to ask if this would have showed up on my PET scan a month ago. Are my feet even scanned? I have no idea.

Also, who on earth has to worry about melanomas under their big toe nail? Apparently the girl who had inflammatory breast cancer.

My preferred hypothesis is that it is an infection. Cancer is still to blame for this possibility, I think, due to a continued weakened immune system. Please join me in cheering on the powerful antibiotic cephalexin (I used this antibiotic to make discoveries in graduate school!) and hoping is makes it all the way down to the toe peanut gallery.

What a ride

2012-02-29T21:16:00.001-06:00

Before I forget, I have two more things to say about the colonoscopy prep. 1) It dehydrates you. This should be intuitive, since you are ingesting ungodly amounts of salts (laxative), but it's not because you are also consuming an ungodly amount of hydrating materials (liquid diet). So try to drink EXTRA liquids despite the bloating and nausea and being just plain sick of liquids. 2) Laxative-induced things do not stop coming out of your colon prior to the procedure. I was feeling a bit embarrassed as I prepared to head to the clinic, stopping in the bathroom one last time at home in an attempt to evacuate things for the last time. I wasted no time telling the nurse about this issue, in case the procedure would have to be rescheduled, but she said that this non-stoppage is the case with everyone. The doctor will continue to suck out material during the procedure.

I would have been more comfortable, both physically and mentally, if I had known these two tidbits going in. I hope they help you out someday.

On to the procedure itself. The nurse insisted going in that I would be slightly awake but that I wouldn't remember anything. Well, I have news for you, nurse: if I'm awake, then I'm remembering. Maybe not all of it, maybe not perfectly, but I'm remembering. This is a well-trained steel trap up here (except when recalling movies--then it's an aluminum sieve). And so it is with great delight that I report that I was awake during the whole procedure, and with a perfect view of the monitor! I got to watch the camera go in, sucking up green slime along the way. I got to feel the camera bending around the primary curves of my colon. It tickled. I heard the doctor ask about giving me more drugs (either percocet or fentanyl), but the nurse commented on my cooing, "Why? It sounds like she's on a roller coaster!" Dr. Gastroenterologist got the camera up to the proximal end of my colon very quickly, but he was slower on the way out. There were several pauses to examine and photograph areas, followed by very swift movement to the next spot. Then it was over, and without any pain or discomfort from the scope itself. The nurse wheeled me to the recovery room and told me that I couldn't have anything to drink until I passed gas. They pump a lot of air in there during the procedure so that things stay open. So I rolled around until one enormous volume of air moved from within to without. Then I got grape juice and hot tea. My delightful mother-in-law helped me to get dressed while we waited for Dr. G. In his street clothes, he came and gave us the report that there was absolutely nothing abnormal in my colon. Huzzah! I asked him whether there could be something abnormal on the outside of my colon that his examination would not have seen. He said not likely. Then I asked him what would happen if this same area shows increased metabolic activity on my next PET scan. He said he wasn't sure, but I wouldn't be seeing him again. He probably didn't use words quite so harsh, but this is the essence of what he said. Then he backed out of the room as fast as he could.

Clearly he was banking on the fact that I wouldn't remember any of this.

Also, he gave me a sheet of paper containing 4 pictures of my colon. Huzzah! However, these were all stock positions of typical colon landmarks. They were not photos of the region shown to be questionable on the PET scan. What gives? I could have told you that there was nothing wrong with my colon landmarks. I want a picture of the questionable site. Not seeing for myself the appearance of questionable sites is what got me into this mess in the first place (recall original ultrasounds of the left breast).

Needless to say, I was not very pleased with Dr. G. But this shouldn't be surprising, because I'm rarely impressed with 1) procedural doctors (doctors who perform and bill by procedures), and 2) doctors I only meet once.

OH! The nail in the coffin for Dr. G actually happened before any of these disappointments, right after I met him, right before he injected the drugs into my system. I was lying on the procedure table, getting-to-know him, sharing the fact that I'm a microbiologist currently studying the microbiota of pigs. I imagined talking a moment of shop with him, expressing our mutual affection for those amazing bacteria within. Do you know what he said? I was so upset that I don't remember it word for word, but here's the important part of the quote: "...nematodes..." NEMATODES! Nematodes are WORMS, not bacteria!!!! This calls for a survey of my non-scientist readers: do you know that nematodes are not bacteria? I don't care if you know nothing about either organism, but I'm pretty sure that you know that they are less related to each other than we are to primates. Well, maybe you didn't know that analogy in particular, but now you do.

And finally, on to issues of recovery. I am not feeling tip top today. I worked almost a whole day, but came home early due to what I'm calling seasickness (nausea and dizziness) in addition to fatigue and tingly hands. I called Dr. G's office but guess what? Neither he nor his nurses work on Wed. afternoons, the day after their procedure day (shake head here). I spoke with the gastroenterological nurse on call, and she told me to go to the ER because it sounded neurological. Sigh. So I hung up and called Dr. Oncologist. She said to sleep on it and call her in the morning if it's not better.

In the interim I have come up with my own hypothesis: low iron/malnourished. This could lead to decreased hemoglobin in my blood, decreasing the oxygen to my brain and extremities (i.e. my phenotypes). This would also make sense given the fact that I didn't eat for over 30 hours and my female parts are doing female things (i.e. my monthly bloodletting). So I ate lots of green vegetables for dinner and I'll take my vitamin in the morning. Maybe Dr. O will have other suggestions when I present this hypothesis.

Longest post EVER to say that my colon is FINE. I will celebrate in due course, when I'm feeling better. What an EXPERIENCE.

And while I was writing this, one of my favorite songs in the universe came on Pandora. I hadn't heard it in ages. So here it is for you. "Into the mystic" by Van Morrison. Turn up your bass.

Creating space within

2012-02-27T20:00:00.001-06:00

I went to yoga last night, both to take my mind off of things such as colonoscopies and to get me out of the house during dinner (mmm...dinner). As the class meditated, the instructor gave a little lecture on the space within our bodies. Our bodies consist mostly of space, and it is important to nurture our internal spaces because that is where our pure potential lies.

If only she knew just how much space was being created in my body last night!

Whenever I ask seasoned people about the colonoscopy prep, they are quick to suggest tasty liquids or to reassure me that the procedure is no big deal. However, they use hyperbole such as, "Get ready to be in the bathroom all night!" to explain what happens in between. Naturally, the part that takes place in the bathroom is precisely what I am most concerned about. Will drinking all of that liquid be uncomfortable? Can I still read books to my kids, or will my Miralax-induced urges beckon me? Will I literally be sitting on the toilet for hours? Will I be able to sleep?

And so I have decided to make a Colonoscopy Prep Log (log! ha!) to record the events, in case any of you are curious like me. I'll try to keep this scientific and not gross. All procedures are as prescribed by my as-yet-unmet gastroenterologist unless otherwise noted:

My assorted beverages and laxatives, posed with the colonoscopy brochure.

Eleanor investigated my pomegranate-ginger ale-laxative concoction, served up in a Capital brewery glass for moral support.

6:50 Took 2 stool softeners, 2 hours later than prescribed (hoped this wouldn't come back to bite me in the a$$) (ha!)
7:03 One hour later than prescribed (due to yoga). Drank 2 capfuls of laxative (Miralax) mixed into ~8 ounces of pomegranate juice plus ~2 ounces of ginger ale. Embarrassed to admit that it was delicious. Felt optimistic for the next few hours. Girls were very interested in what I was doing.
7:18 Drank the same concoction. Discovered that it's easier to drink when it sits at room temperature (i.e. mix the next drink immediately after the previous drink, allowing it to sit on the counter during the interim). Still optimistic. Hungry enough that it seemed that 64 ounces would be no problem.
7:43 Drank the same concoction. Still optimistic. A little burpy, presumably from the soda. Started to feel a little full. Pomegranate juice all gone, and tried to ignore the delicious pizza leftovers when opening the fridge to retrieve the next beverage.
8:05 Drank 2 capfuls of laxative mixed into 8 ounces of apple juice plus 2 ounces of ginger ale. Not as tasty as the pomegranate concoction, but still on the good side of tolerable. Laxative intake 66% completed.
8:23 Drank the same concoction. Started to feel quite chilly. Folded laundry to warm up. Still a little burpy.
8:48 Drank the final juice/laxative concoction. Body felt very, very cold. Moved to the microfiber chair, with quilt and laptop warming my lap. Thought about how easy it was to complete the beverage portion of the evening.
9:24 Felt slightly nauseous. Drank 2 cups of vegetable bouillon for a late "dinner" in an effort to settle the stomach. Wished for a bowl of oatmeal.
9:51 Bloated. Sleepy. Anxious to get this party started.
10:02 The party finally started.

In the bathroom at approximately 15-minute intervals for approximately 2 minutes at a time.
Persistent tummy rumbles a-la Harry in Dumb and Dumber.
Constant low-grade nausea, probably due to the hunger.
Still cold
11:00 pm Supposed to take two more stool softeners, but elected to skip it. Nothing needs softening. [Started to understand why my stepmom shrugged at some of the instructions: how your own body responds to the treatment becomes clear (literally) as you work through the process.]
12:00 Lamented the wasted pomegranate juice. At least it was on sale.
Busy until my body allowed me to sleep at 1:00 am. Hard to fall asleep out of fear of passing gas, which can no longer be trusted.

6:50 am Kiddos woke me up. No longer bloated. Still rumbly.
7:30 am Drank 1/2 of a bottle of magnesium citrate (laxative #2, super gross). Supposed to drink the whole thing at 5:30 am, but seriously, no more gut contents to shed. [Plus, there is a little disclaimer on the instructions that if you have kidney disease, do not drink this stuff. However, they offer no alternative procedure for the folks with kidney disease. What gives? Can this truly be required for someone who hasn't eaten in 24 hours, particularly knowing that there's a subpopulation with kidney disease who can skip it?]
8:15 am Drove kiddos to preschool.

Rest of my morning: Shower. Knit through the tummy rumbles, nausea, and hunger. Drink juice. Think about attempting some science. Walk to the clinic at noon.

My assessment of the prep is that it's annoying, but that's all. The most annoying part is being in mental conflict with my bodily urges, primarily "Please please please, can't I eat just ONE cracker?" But I'm on the home stretch. Hopefully this truly is the worst of it, as people have counselled.

Prep for prep

2012-02-26T14:47:00.001-06:00

Here we are at last, on the eve of Colonoscopy Eve. Everyone tells me that the preparation for the procedure is worse than the procedure itself, so my efforts at mental fortitude are focused more on tomorrow than on Tuesday. Then of course my efforts will shift to Friday, which is results day.

Tomorrow I am allowed to have a light breakfast, such as cereal or toast, and then I am to drink only clear liquids all day. Jello and apple juice are allowed, but dairy and liquids with pulp are not allowed. At the end of the day I drink 2 cups of laxative mixed with 64 ounces of a clear liquid of my choice. This should effectively clear me out pretty rapidly. But in case it doesn't, I am also to drink 10 ounces of bonus laxative in the morning. Procedure doesn't start until 12:30. Boo.

So what am I doing today, to prep for the prep? Ian and I went out to brunch (thanks, dad and Barbara!) to the best restaurant in town. I had quiche and fruit and salad and toast and potatoes. And oh my goodness, it was the best brunch I've had since we moved from Madison (shout out to Cafe Continental, which sadly only exists in our memories).

Then we went to the store to buy the various laxatives and clear liquids. We're not much of a juice family, as we prefer to eat our fruit rather than drink it, so we were truly in need of supplies. When we got home, I decided to refrigerate some beverages but to keep some at room temperature. I've been warned that drinking 64 ounces of laxative + cold liquids can make a person quite chilly, so I want to be sure that I have a range of temperature options.

With tomorrow's supplies ominously lined up on the kitchen counter, I decided to pre-medicate against tomorrow's liquid-diet weakness with a bike ride. It is a glorious February day, with bright sunshine, sticky snow, and dry concrete. I biked along the river, taking the same route that my family and I walked on New Year's Day. I paused at a place where the river babbled over some rocks, listening to the crescendo of the wind as it gathered muster in the treetops. This natural orchestra resonated with me as a metaphor for my first two months of 2012: the constant bubbling of everyday life overlaid with occasional personal and professional uproars. It was soothing and grounding--an empowering soundtrack that I will play in my head during the next week.

Santa Fe in pictures

2012-02-22T22:52:00.004-06:00

What an amazing vacation! It's hard to believe all of the things that we crammed into 3 full and 2 partial days.

The kids were oh so very excited to fly on an airplane. I captured Azalea's excitement below. When I asked her what her favorite part of flying was, she said, "The cookies!" We flew on Frontier and they served up warm chocolate chip cookies on each leg. This presented an interesting parenting condundrum: at 9pm, after feeding your child sugary fruit snacks on the ascent to help their ears to pop, how do you deny them the gooey goodness that they have come to associate with flying? It was hard, but we found a way.

My nephew Kael and his family accompanied us on the trip. He is a lovely child. Well-mannered, silly, and adorable.

I love Kael!

On the first morning, we escaped the back yard and went hiking on the adjacent acreage. Azalea was overcome with excitement.

She takes after her mother.

Eleanor found a cactus walking stick and was our protector, looking out for the kind but oversized neighbor dog, ready to sound the alert (i.e. scream).

Back at the house, the girls painted in our host's painting studio. He is a professional artist. His space made me feel as though I could paint, too. It was a lovely space.

After nap we explored downtown Santa Fe. We stopped to get the kids some Haagen Daas ice cream (it was vacation, after all). They all demonstrated their "chilly face".

Oh my I have a pointy nose.

And that was just day 1! On day two my mom took Azalea skiing while my sister and I took the little kids sledding, all of us somewhere up in the Santa Fe mountains. It was an exhausting morning, so it was a low-key afternoon at the house. Low-key afternoons after an exhausting morning are arguably my favorite part of a vacation.

We were somewhere up in the whitest part, in the middle.

On day 3 we went to Pecos National Historical park to visit the ruins of the old Pecos Pueblo. Pecos became the central city for the merger of several Native American tribes before the arrival of the Spaniards. They successfully warded off the Spaniards for awhile, but eventually succumbed. The ruins are fantastic, the centerpiece of which is the mission. The walls of the first story are still standing.

Azalea dancing upon our entrance to the mission ("castle")

The girls in one of the archways. They were only as tall as my shoulders, if that.

After Pecos we hit up the Santa Fe children's museum. This was not an optimal juxtaposition (past civilization to modern sensory overload), but we wanted to do both activities and this was the way the chips fell. I felt that the children's museum overshadowed Pecos, but next time I'll be more sensitive to that type of thing when planning the activities. For what it's worth, although we spent several hours at Pecos, all four of us tired of the children's museum after a mere hour, having spent most of our time at the bubble table.

On day 4 my sister and I got some time away from the families and went on a brief date downtown. Then it was time to pack up and move out. When boarding our first flight, the co-pilot was standing next to the stewardess and invited Azalea into the cockpit. ! At first she was a little bit shy, but then she met pilot Tony who invited her to grab onto the...wheel? I can't think of what the steering thingy is called in an airplane. Regardless, I got the camera out just in time for Ian to snag a pic. Lucky kid.

Our flight got in at 10:30pm, and it wasn't until 11 that we had our luggage. My kids have never been up that late in their lives, but they were holding up very well. In fact, Eleanor insisted on dragging her own suitcase AND pushing the elevator buttons. It was thoughtful of her to give her parents a break.

Per usual, a good time was had by all. Now it's back to the grind, but with a refreshed spirit it doesn't seem so bad. Although I'm already looking forward to the next vacation...

Phantom

2012-02-16T21:06:00.000-06:00

This is a phantom post because I posted it in the past to appear in the future while I'm on vacation. It is also a worthy title because I am going to talk about a phantom phenomenon related to some mastectomies.

I recently read the book No Less a Woman by Deborah Hobler Kahane. She is a breast cancer survivor, and her book contains several essays by other survivors. I read these essays with great interest, mostly with an eye to why (or why not) women choose to reconstruct after mastectomy. I found numerous wonderful nuggets of information and perspective, including the discovery that some women regain feeling in and around their scar. One woman cited discovering a phantom nipple. She found a place on her skin that when touched just so, felt like her old nipple.

Can you believe it? She must have found the severed nipple nerves. I did not know that this was possible.

I myself have not regained feeling in the left chest wall, armpit, or underarm. In fact, if I apply body spray to the region, I cannot feel either the coolness or impact of the spray. I can feel the pressure of a touch, and my bones still ache when pressed anything but gently, but the skin is not sensitive at all.

Well, you can imagine that this woman's account got me thinking about my severed nipple nerves, where they might be, and how I might find them. Considering my gross lack of feeling in a large area, it was not surprising that my initial attempts at nipple nerve discovery were unsuccessful. Until I got the rash.

In January I had a mega rash in the shape of New Hampshire on my damaged chest wall. It itched something fierce, which was entirely unfair for someone who thought she had no feeling in the area. But one day, I swear the itch was on my phantom left nipple. My brain thought that the left nipple was itching, but I don't have that nipple anymore. The cruelty of cruelties was that I COULD NOT PHYSICALLY LOCATE the source of the itch, and therefore could not scratch it appropriately! I halfway satiated the itch by rubbing somewhere near my 4th rib, but it wasn't as satisfying as itching the real thing would have been. Regardless of this annoyance, I was excited (titillated?) to have discovered my long lost nipple nerves.

Sadly, I lost my phantom nipple after the rash subsided. I have not been able to find any place on my body that registers as "left nipple" in my brain. Perhaps as the healing continues, my severed nipple nerves will re-awaken and find themselves near my clavicle, sternum, or armpit. I will never give up the search.

Sorry for a nipple post, dad.

Vacation eve

2012-02-15T21:07:00.000-06:00

Usually on the night before a vacation I am so excited that I hardly sleep. I run around packing and cleaning until I finally collapse on my pillow, unable to sleep as I recheck my list before I board the plane in my dreams. But tonight, I'm having the opposite problem: I can hardly keep my eyes open.

I have been fighting a cold for well over a week now. The good news is that I am preventing a war in my throat or lungs, but the bad news is that the skirmishes in my sinuses are wearing me out. I feel like I'm teetering on the edge of a cold. It's not worthy of complaint, particularly considering where I've been, but it's a major factor contributing to my exhaustion.

Fortunately our flight is not until early afternoon, so I will write the list and create piles tonight, then tomorrow morning Ian and I will teamwork the actual packing. I think the most sensible part about giving in to sleep tonight is that I have a chance to wake up with renewed excitement. Packing tonight would feel like a chore, but packing after a good night's sleep will be fun.

The kids, oh man, the kids. They are incredibly excited. The plane ride, the mountains, they just can't even imagine these things yet. Additionally, my mom wants to take Azalea skiing. Azalea didn't know what that was, so Ian showed her some skiing clips on YouTube. Her eyes got big and she said, "Dad, that looks dangerous." Hopefully when we get there she'll try the bunny slopes, but if not it will still be fun to hike around a mountaintop.

I'll be sure and post pictures of our trip, possibly while on the trip. Be well!

Why Heather, aren't you radiant today?

2012-02-07T20:00:00.000-06:00

I've been wanting to do this after several PET scans now, but I was uncertain if I should put it on the blog or not since it requires a tool that I don't have at home. I suppose now that you know what I decided, the only remaining question is, regarding what?

As I have explained previously, the purpose of a PET scan is to detect regions of increased metabolic activity in the body. Increased activity is potentially indicative of cancer. This activity is detected by injecting a hungry person with radioactive glucose (sugar). The person then rests for an hour, and since the person hasn't eaten in awhile the sugar goes straight to the hungriest cells (cancer, if present). The radioactivity concentrates there, and when the person is scanned after the hour of resting this concentrated radioactivity (if present) is mapped.

What I don't think I've discussed previously is, what happens to the radioactivity after the scan? Well, it decays and goes away. The type of radioactivity used in a PET scan has a very, very short half life, so short in fact that the clinic receives a shipment of radioactivity for the morning patients and a separate shipment for the afternoon patients. Said another way, a shipment received in the morning is no longer radioactive enough to be used in the afternoon patients.

But there are several hours between "morning" and "afternoon". Needless to say, I was curious about how radioactive (hot) I'd be just after a PET scan.

Lucky for me, we have a Geiger counter at my place of work. A Geiger counter is a little box the size of a car battery with a microphone-like wand attached to it by a cord. When turned on it works much like a metal detector, making rapid beeps when it detects radiation nearby and only occasional beeps in its absence. My friend Sam was all too eager to use the Geiger counter on me, approximately 2.5 hours after the radioactivity was injected in my arm for the PET scan. Fortunately Torey had his camera. (Don't mind my ridiculous walking posture. Apparently I don't walk normally when I know there's a camera on me.)

Radiant indeed! I suppose that for as much as I hate PET scans, they provide a nerd's delight. Some amazing technologies are intertwined to make cancer detection happen, radioactivity and all. Nerd salute to physics!

Booked

2012-02-04T21:26:00.001-06:00

Thanks to good health and great family and friends, it's been a fantastic winter. This is true even though the weather has provided only one sledding opportunity.

Azalea's hat is actually an owl puppet that I made for her. It was her own genius that told her to wear it as a hat.

However, I remain committed to my desperate need for a vacation. I have worked and worked for months and months, laboring away at home and at my job and at my health. During cancer treatment I longed for a Caribbean vacation, but this has been postponed until everyone can save up a bit more money. I have taken long-weekend road trips to visit family and friends, and I have taken a trans-Atlantic flight for my job, but none of these have quite hit the vacation mark.

Until now. The stars have finally aligned between my hard-earned bank of vacation time (I have at last saved up 40 hours, no thanks to you, endless Herceptin treatments) and the affordability of airline tickets to Albuquerque, New Mexico. That is where my mom and grandma live, and if I haven't seen my mom since March then it's been over a year since I've seen my grandma. Ian, Azalea, Eleanor and I are going to fly down there for a long President's day weekend (Feb. 20), and I can't wait. It'll be warm, it'll be sunny, it'll be mountainous, it'll be fantastic. Oh yea, it'll also be a high-altitude cousin extravaganza because my sister and her family are accompanying us. Won't it be great for my mom to have all three of her grandkids around at the same time?

If you think I'm excited, how about my Azalea Bud, who is old enough to know that she's never been on an airplane but would like to very much? She is so excited! She keeps asking when we're going, but as someone who is still learning the meaning of "just a minute", "leaving in two weeks" is somewhat lost on her. Ian's birthday is just before our trip, so for a point of reference I told her that after daddy's birthday we will go on our trip. The result is that every day she asks if it's time to give him his presents, bake his cake, etc. Quite precious, but clearly I haven't helped her at all.

My mom had the idea to cross off dates on a calendar, but I took it one step farther and turned the idea into a craft project. Today we made two airplane trip counter-downers, one for each girl. Every day they get to tear off a paper ring, and the day they tear off the last paper ring is the day that we're going on our trip.

I wanted to make one for myself, too, but my creative energy was spent too soon.

Because of this trip I had to delay the colonoscopy by one week. Honestly, it felt good to move an appointment like a normal person. I never touch my oncology appointments, but I don't see the colon thing as an oncological issue and thus moved that appointment as one would move a dental checkup. Let's hope it hasn't gone the way of the breast and I can continue to be casual about my colon.

The weekend after

2012-01-29T21:30:00.001-06:00

To recap, Friday was a stressful, cancer-scare roller coaster that ended with good news: the breast MRI showed nothing abnormal in my lungs or chest wall. The excessive amount of radiation I recieved is to blame for the continued increased metabolic activity in those regions. Hopefully that activity will fully subside before the next PET scan.

What does a girl do after a day like Friday? Rocks the heck out of her weekend.

After I got the results on Friday at 5, it was hard to say whether I felt like curling up on the couch under an afghan or putting on my tall boots and going out. I opted for tall boots. Thanks, Ian, for giving me a night off from the kids.

I drove to a bigger city and met my sisters, aunts, and step-mom for a night on the town. It was fantastic. Even the drive was therapeutic, both because it was valuable time to decompress and because I got to listen to whatever I wanted to at whatever volume I wanted. Turns out that I like to feel the bass in my chest, and I hadn't listened to Outkast's Speakerboxx in a really, really long time--the kids aren't big fans.

(the only relevant lyrics here are "can you feel that B-A-S-S bass". Don't try to decipher the rest.)

We went out for dinner and we went dancing.

I slept in on Saturday.

I took the girls to spend the night with their cousin at Aunt Jacque's house on Saturday night.

My dad called to invite Aunt Jacque to a basketball game, but since I was there she decided to pass. Is it wrong that I scarfed up the ticket and ditched Aunt Jacque? Yes, it is, but that is what I did. It's not every day I get a date with my dad. And oh my goodness did I pick a good game to attend. We won in triple overtime, against the best team in the conference!

I didn't get to sleep in on Sunday because my ladies never sleep past 7:30, but there's more to life than sleeping in. We packed a picnic and had lunch at the botanical gardens. The sun was shining, flowers were blooming, and fishies were ducking the coins that my girls pelted at them.

To cap it all off, my mother-in-law made us homemade pizza tonight. It was a splendid weekend. The only part of me that remembers Friday is my shoulders (still a bit tense). Hopefully yoga tomorrow night will relieve some of that.

You know what's funny? When I got the crappy PET scan results on Friday morning, my first two thoughts had nothing to do with death or pain. They were about fatigue and vanity. I said some version of, "BUT I NEED A VACATION! I'd better go on a vacation right now so that I don't have to spend my vacation time on being sick again." Then I said something like, "BUT I HATE MY HAIR AND I DON'T WANT TO HAVE TO GO THROUGH THIS AWFUL GROW-OUT AGAIN!" Isn't that something? I surprised myself with my shallow and irrational reactions compared to the very serious possibilities of cancer treatments and aftermaths. I later apologized to my oncologist to demonstrate that I recognized my misplaced values. She was very understanding and said that I had a right to be frustrated and irrational.

I continue to be intrigued by my reaction because I feel like I do a good job of simply wanting to live (this weekend is Exhibit A), and yet when confronted with another threat to my longevity the first thing I did was whine about my hair. It really is a terrible hairdo for me, but it doesn't hold a candle to any of the other cancer side-effects.

Lunch is packed, blog is posted, and now it's time to squeeze in a few minutes of relaxation before visiting the sleep fairy. I hope you all have a great week!

2.5

2012-01-27T11:11:00.000-06:00

Wish I was sitting down to post some Julie Andrews chirping in the hills. Instead it's Julie Andrews with her spoonful of sugar to help the medicine go down.

The PET scan was not clean.

The PET scan continued (third scan in a row) to show low-level abnormalities in the left lung. Dr. O thinks it's residual radiation damage, but unnamed Dr. Radiologist wrote on the report that those are usually gone within 9 months after radiation. My radiation ended 8 months ago. Per usual, my result falls into a gray area.

The PET scan also showed low-level abnormalities in my left chest wall. This too is probably part of the recovery process, but here again the conclusion is that it has had nearly ample time to recover. This result combined with the above result equals a breast MRI at noon today. I might get those results today, if a radiologist is available to read the results. More likely is that I'll get the results on Monday. I'll let you know in the comments.

Isn't a "breast" MRI a moderately offensive misnomer to investigate an area from which the breast has been removed? I suppose "breast" is used generally to refer to the region at large, but it is nonetheless irritating for a person lacking a literal breast. But I digress...

And finally (no, we're not done yet), the PET scan showed a low-level abnormality in my colon somewhere. This means I get to have a colonoscopy on February 21st, and I hear that they just do biopsies as needed during the procedure. Good times.

Hence the 2.5 designation of my ranked outcomes from the previous post. I should have known that I would get results that fall awkwardly between my expectations.

Dr. O is not alarmed by any of these things. She does not expect any dire outcomes, although I don't feel that she sufficiently explained why or why not. I, on the other hand, am disappointed and of course moderately alarmed. I have been told before not to be alarmed but then what was the outcome? Oh, right. Inflammatory breast cancer. So I will take a deep breath, and another, and another, and try to slow my 104 beats-per-minute heart. I certainly don't need that body part to fail me now.

Mind games

2012-01-26T09:55:00.001-06:00

PET scan is complete. Ian and I will get the results tomorrow at 9:15.

Until then, I estimate that I will discover 4 red spots, 3 sore bones, 2 lumps, and 1 headache. Because that's how it is in the interim between Scan and Results. You can be as healthy as I have been for three months now, but when you're waiting for PET scan results it doesn't matter. You rediscover all sorts of relatively normal blemishes, aches, and pains, and you wonder if they will result in suspicious spots on the PET scan. Remember, suspicious spots on the PET scan are indicative of elevated metabolic activity, which is indicative of cancer.

My preferred outcomes are ranked as follows:

1) No suspicious spots at all

2) Suspicious spots that we keep tabs on until the next PET scan

3) Suspicious spot that requires a biopsy

4) Suspicious spot and biopsy that indicate cancer

I suppose you could have inferred all of that, but it was therapeutic to do the rankings.

Now I'm off to work. I don't have any meetings today so I think I'm going to keep the stretchy pants on. Bold move, I know, but today I don't care. Wearing comfy clothes might help me feel more relaxed.

It's that time again

2012-01-22T12:00:00.000-06:00

Once again, just around the corner on Thursday, is my next PET scan. These things seem to come around sooner and sooner every time, but no, they're only every three months. Only.

I think the interval between PET scans seems shorter now because I have my health. I am no longer measuring my life by the next PET scan. It's hard to believe that there ever was a time when I measured my life by the next PET scan, but there was and I did. I remember thinking that the next PET scan would mark the end of chemotherapy, or the end of radiation, or the end of herceptin treatments. Now it's a disconnected PET scan among research publications, folding laundry, and putting together princess puzzles. It seems unrelated to life as I know it, and it reminds me of the life that I don't want to know again.

There's something to be said for, "What you don't know won't hurt you." Don't get me wrong, I'm a proponent of Knowledge is Power, and obviously unknown cancer cells in your body are exactly what WILL hurt you. But regarding the emotional side of coping with cancer, it certainly seems easier to not know about it. Knowing about it means that there will be long periods of dread and pain. PET scans are near the epicenter of that dread.

The PET scan itself is relatively painless (4-hour fast, 2 pokes, 1 hour rest, 0.25 hour scan), but the dread of the results is formidable. Questions of, "Do I have cancer", "Has the cancer spread?", and "Has the cancer come back?" plague the mind until the moment in which the doctor at last pours over the lengthy results with you. And even with good news the relief is not complete, at least not for me, the girl who has never scanned clean. First it was the inflammatory breast cancer, then it was my T9 vertebral body (didn't turn out to be cancer, thankfully, but the dread between the PET scan and the biopsy was unspeakable), and two consecutive scans with tiny nodes on my lungs (too small to biopsy, yay?). So I rejoice in a mediocre sort of way and try to forget about the decent but not good news until the next PET scan. Which is upon us.

Lung nodes, you've got to go away. I appreciate that you don't get any bigger, but you inhibit my ability to release my inhibitions. Let's end this relationship, shall we? Out, damn'd spots!

Freaky itchy rash

2012-01-18T21:49:00.002-06:00

Gross post title, I know, but it really is an accurate summation of what I'm about to share with you.

About a week ago I noticed about a dozen itchy red spots on my skin. Of course, they weren't just anywhere on my skin. They were all within the vast expanse of skin on my chest wall that was irradiated to eliminate any rogue inflammatory breast cancer cells. Long-time followers of this blog will have learned that inflammatory breast cancer has an incredibly high risk of recurrence in the first 2 years, and you might also remember that inflammatory breast cancer manifests as a sometimes itchy rash. You can therefore imagine my initial reaction to wake up and see spots localized to the Region of Perpetual Scrutiny.

The panic quickly subsided, however, as the Voice of Logic and Reason took over: recurrence of cancer in mulitple locations at precisely the same time should be highly unlikely. So I located my prescription-strength hydrocortisone from my previous rash scare and applied liberally. Twice per day. Over the long holiday weekend.

The rash got worse! I was and still am barely winning the fight against clawing at my skin. I periodically lose the battle and imagine how my absent-minding scratching must appear primeval appear to others.

I finally managed to work myself into Dr. Oncologist's schedule at 5 pm today. Beneath the dull intensity of institutional fluorescent lighting, the rash really was a remarkable sight to behold. Speaking in two-dimensions, the area of my chest that was irradiated is shaped like a double-wide New Hampshire, reaching from the bottom left half of my rib cage clear up onto my neck. Even in the absence of this knowledge, one could trace the outside edge of my rash and the resulting shape would roughly be a double-wide New Hampshire. In other words, the rash exclusively occurs in the region of irradiated skin. It is truly remarkable.

So...what is it? Dr. O isn't sure, but she's sure it isn't cancer. Since it didn't respond to the hydrocortisone, and indeed seemed to worsen, the prevailing hypothesis is that it's a fungal infection. Yeast are a type of fungi, and yeast-related infections are known to become more irritated with hydrocortisone. I now have my old trusty anti-fungal pink trapezoid pill (diflucan) to take for the next twenty days and a greasy ointment with which to slather my chest. Geez I hope it starts working soon!

Also, WHY on earth do I have a yeast infection on my chest wall? The literal answer is that the irradiated skin is extremely vulnerable and immunocompromised, meaning that it is and will continue to be eager to pick up infections and irritations. I'm not really sure where I picked up the yeast, but I do live with small (aka germy) children. Also, certain yeasts are a natural part of human microbial communities, so maybe this opportunist actually lives somewhere else on my body and just took a road trip to my chest wall. Long story short, I don't think there's anything I could have done to prevent this. But it kind of blows my mind and simultaneously grosses me out.

And finally, am I going to have to deal with this freaky-a$$ crap for the rest of my life? SUPER bummer. Normally I would end with something cheesy like, "At least I'm alive to live this glorious day!" But let's indulge my New Hampshire itch festival for a moment and just leave it at bummer, indeed.

My creative surgeon

2012-01-15T21:25:00.000-06:00

As I was doing the dishes on Tuesday night among bouncing children, I was absently listening to NPR and caught a familiar name. The host of Talk of Iowa was describing her upcoming show, and the guest was to be none other than Dr. Carol Scott-Conner. That's "Dr. Surgical Oncologist"! That's the surgeon who removed my cancerous left breast! I have done a good job thus far of keeping my doctors anonymous, but I am willing to "out" this one in order to share her accomplishments.

She is an award-winning surgeon and instructor. She is also very personable and genuinely seems to care about her patients, this one included. And on top of everything, she is a writer of short stories. Can you get any more amazing?

Follow the link above to listen to my surgeon talk about her career and her writing.

Fitness!

2012-01-10T21:23:00.000-06:00

I haven't been doing enough exercising lately, especially not the kind that gets my heart rate up, but the little exercise I'm doing sure is a lot of fun. In addition to attending a yoga class once per week, the girls love to do yoga with me at home. It's not at all meditative, it's full of interruptions, and it never lasts long, but I do get something out of it. Endorphins released by laughter should count for something towards health and fitness, if not in the exercise category.

Many of you have probably never done yoga before, so I thought the girls could help me show you some of the moves we know. Here is table pose:

Here is banana pose:

And finally, triangle pose:

We can usually get in a good 10 minutes of yoga before one of us loses interest. (Rarely is it me, but I'm not one to point fingers.)

Another fun winter exercise for the kids is a new game that Ian devised called Fitness. Observe:

The silliest part of all of this indoor fitness is that the weather has been so mild this winter. We are still walking to the grocery store, walking downtown, and walking to playgrounds. But it is still quite chilly after dark, which is when most of our indoor exercise occurs. And for our lifestyle, there is no such thing as too much exercise.

Flush

2012-01-05T21:24:00.000-06:00

On Tuesday I went to the Oncology office to get my port flushed. Have I mentioned this yet? In brief, I'm no longer using my port (huzzah!) but I have to keep my port until the odds improve that I will remain cancer-free (boo!). An unused port requires routine maintenance so that no yucky blood clots or infections develop in the port. So about once a month I need to pop in and get my port flushed.

It takes about as long as an oil change; most of the time is spent waiting.

I have previously documented my port and its usage for chemotherapy. But thankfully it's been awhile, so I thought I'd document the flushing procedure. First, access (poke) the port with an L-shaped needle. Then draw liquids out of the port before flushing. This is because a small amount of heparin sits in the port reservoir 24/7 to prevent blood clots in the port, but I had heparin-induced thrombocytopenia back in March. This means that heparin indirectly causes a decrease in my platelet count. I probably don't need to worry about it any more, because I probably have enough platelets to spare now that I'm recovered, but I just don't feel like doing something I know my body hates. You never know when you'll need all of your platelets!

So I always ask the nurse to draw off the heparin before flushing my port. Sometimes something is stuck in there (yuck!) and I have to do the Y-M-C-A to get it unstuck. "Gross, what's stuck?" you may ask. Well, perhaps my body tried to "heal" the tiny opening in the port tube, thus blocking it temporarily. Perhaps the port tube is stuck to the side of my superior vena cava. We're not quite sure. Only once were we unable to will it unstuck, and in that case we just proceeded to flush the port with saline. The force of the flush is always sufficient to unstick my port, it's just on the initial withdraw that the challenge sometimes presents.

After the withdrawal of the heparin comes the flush with saline. Ten to 20 milliliters (I'm such a nerd that I don't even know how many ounces that is, or perhaps a true nerd would have the conversion memorized) is all it takes. Finally, the nurse gently injects a mere three milliliters of heparin into the port reservoir before removing the needle.

I've decided not to add the port flush pokes to my poke tally. I feel satisfied with my year-of-cancer-treatment poke tallies, and don't want to artificially inflate its meaning with port flush pokes.

But the real point of this post is to admit how WEIRD it was to be in that oncology waiting room! I feel good, I have a full head of hair, I'm not being treated for anything, I'm smiley. The further I get from all of that cancer business, the less amenable I am to be in a place having to do with cancer treatment. It didn't bother me for my December flush, but I was slightly bothered this time. I even found that a decorative quilt in the reception area that I so adored now makes me slightly queasy. All of this is an interesting phenomenon that we must keep tabs on, but perhaps I've said enough for now.

New Year's nature walk

2012-01-04T21:24:00.001-06:00

New Year's day was one of the coldest days so far this season, primarily due to the gusty wind, but it was too beautiful not to go outside. We took the family down to a nature area by the river for an easy hike.

We thought we'd cross the river to the dirt trail, but the wind was just too much over there. So we threw the requisite stick (because who can stand above a river and NOT throw a stick into it?) and retreated to the asphalt path. We were heading north, into the wind, so we bundled the kids up in the wagon with the quilt that my mom made for me when I graduated from high school. It's still my favorite blanket, mom.

Once we were half-way cold we decided we should turn back. With the wind at our backs, the kids disembarked and walked all the way back to the car. In my view, the walk was nice but they especially enjoyed visiting with their parents. We talked about all sorts of nature-y things, even if we didn't see a particular aspect of nature on this particular walk. Volcanoes, for example, were a popular subject on this day. We also heard and saw a hawk hunting, which was a rare delight.

Then we found some sandy Iowa mountains, one just the right size for each of the girls. Both mountains were climbed entirely independently of parental assistance. The victorious Queens of the Mountains are shown.

Then, each with frozen toes and a drippy nose, we returned to the car and drove home. A good time was had by all.

Reflections

2011-12-30T14:45:00.002-06:00

As I frantically try to organize some fun to ring in the new year, I am reminded of what I did or did not do last year at this time and why. I remember the fog of fatigue and nausea that rolled me into 2011. I remember the brain scan in January, the metastasis scare in February, the mastectomy in March, the biopsy in April, the last day of radiation in May, and finally the summer of recovery that led to the most glorious fall.

My reflections reminded me of my favorite houseplant. In college I started the plant from a cutting from home, and it moved with me from the dorms to apartments, from upstairs to downstairs, from North Carolina to Wisconsin. But when the plant and I finally moved back to Iowa in April 2009, I mistakenly thought it would be okay on the porch overnight. It froze. It died.

Just when I was about to throw it out, I saw something amazing.

It was growing again! From the center of death and decay sprang a tiny, vibrant leaf. Over the past two and a half years, this single leaf has given rise to my old favorite plant.

I feel like the beginning of 2011 was the center of my death and decay. But look what has sprung forth this year in my life: from activism (three state proclamations in support of IBC awareness) to career accomplishments (five accepted publications) to family joys (two potty-trained darlings)! I have overcome the trauma almost as effectively as my houseplant.

Here's to the end of a trying yet remarkable year. Happy 2012 to all of you!

The stockings were hung at last

2011-12-27T21:09:00.001-06:00

After I was diagnosed with breast cancer and told that I had 18 weeks of chemotherapy before the mastectomy, it was clear that I was going to have a lot of time on my hands. But not the kind of time that I can do whatever I want, like study microbes or bake cookies. The kind of time in which I'm trying to take my mind off of the nausea or waiting to be called back into an exam room at any minute. This kind of time begs for a craft project. So I decided to start a Christmas stocking for my then 1-year-old daughter, Eleanor.

I had started a needlepoint stocking for my first daughter when she was one, but I didn't finish it before Nori was born. So like any self-respecting twenty-something, I passed it off to my mom to finish. I found needlepoint to be tedious and slow, so for Eleanor's stocking I opted for a felt applique model, hoping it would be faster. It may have been faster if I had bought a stocking of normal dimensions. But oh no. What I neglected to notice when I purchased Nori's felt stocking was that the finished dimensions were to be over two feet long by at least a foot wide.

The gargantuan proportions and exquisite detail made for hours upon hours of cutting and stitching and sequin-ing. I worked on this dang stocking during most visits to the Oncology office. And it took me until Thanksgiving to finish it. It really is a beautiful stocking. I wonder if it will always make me nauseous, or if that's a temporary phenomenon.

The very day I finished Eleanor's stocking, I received a parcel in the mail from my mother, containing Azalea's unfinished stocking. All of the needlepoint was done (huzzah! Thanks, mom!), but the complicated assembly remained. Initially I was disappointed to have so much work left to do on this stocking, but when I held up Azalea's meager stocking to Eleanor's behemoth I was grateful to have the chance to do some equilibrating.

I returned to my friendly felt and used more needlepoint to attach the stocking face onto the felt. I then sewed hundreds of white sequins (snow) around the needlepoint before sewing on a felt back. It's still not done, with some holly berries and a jingle bell waiting to adorn, but it was done enough for this year.

And at last, at the ripe old ages of 2 and 4, my daughters had some stockings for Santa to fill with chocolates, pens, clementines, and socks.

Eleanor's nauseating stocking is on the left, Azalea's needlepointed nightmare is on the right.

I hope that those of you who celebrate Christmas had a fantastic holiday! For us, it was the best Christmas ever. But last Christmas was not a hard act to follow.

IBC awareness shirts are in!

2011-12-14T21:31:00.000-06:00

This post may seem trivial, but I decided that it's important since I don't want my dad to end up with a hundred pink t-shirts in a box in his basement. Besides, bloggers are allowed an administrative post from time to time, right?

Just in time for the holidays, we now have women's sizes of the Inflammatory Breast Cancer (IBC) awareness long-sleeved shirts in stock. They are pictured on the right, although the blog title has been corrected on the Women's sizes. A few weeks ago I had a poll on the sidebar, so if you voiced interest in a shirt now is the time to stake your claim. Feel free to claim one even if you didn't vote--we can always print more. Please email me at "30carnations (at) gmail (dot) com" with your mailing address and order, and I'll send you a shirt. In return, please send $20 to my dad (I'll email you his address).

Profits will be donated to the Inflammatory Breast Cancer Foundation in support of raising awareness of IBC. Thank you for your support!

Bye bye, Scaffold of a Person

2011-12-11T12:00:00.000-06:00

Long-time followers will note that I haven't been updating my Scaffold of a Person lately. I started Scaffold of a person about a month after starting this blog, as a way to introduce my various loved ones to each other and give me the opportunity to honor them publicly. The idea came about after I spent an afternoon with a new friend and I was too sick to come up with a respectable conversation topic based on the few details I knew about his life. I called these few details his scaffold. I then got to thinking about the scaffolds I'd build for everyone else in my life and decided to post them on the blog periodically.

I set up a spot on the blog and wrote a few sentences about someone that was on my mind at the time. I decided not to make it a page on the blog that would have permanent memory, but rather a temporary gadget in which an individual's scaffold would hold brief literary form before disappearing forever. I thought that this model was true to the very definition of a scaffold, and how it changes with time. It was a lot of fun for me, and many of the folks I scaffolded were tickled about it.

However, this rather bohemian model for lack of scaffold retention is not without consequence. Considering that one of the side effects of cancer treatment is temporary impairment of brain function, it is not surprising that I have no idea who have I and have not scaffolded.

My solution is to discontinue the Scaffold of a Person. This is because I don't want to twice scaffold a friend I haven't seen in 10 years if I failed to scaffold my mother, for example. Although I've forgotten just about anything that happened between Oct. 2010 and June 2011 (turns out that's not such a bad thing), I'm sure each of you are very clear whether or not you were appropriately scaffolded.

I just can't in good conscious continue scaffolding. I want to be an equal opportunity blogger. I suppose I could accept nominations for an individual to scaffold, but only if you are sure that I didn't scaffold them previously.

My apologies to those of you who will miss Scaffold of a Person, and to those of you I should have scaffolded. I blame my poor record-keeping, and, that's right, cancer.

Fitness and Cancer: Why It's Important to Stay Healthy

2011-12-07T18:00:00.000-06:00

I was recently contacted by cancer survivor David Haas of the Mesothelioma Cancer Alliance Blog about guest posting on my blog. We have similar philosophies about the importance of support networks and physical fitness to fighting cancer. I started this blog to keep my support network at arm's reach throughout my cancer treatment. My favorite forms of exercise are walking, biking, and yoga, and even on my sickest days I found someone to lean on to walk me down the block and back. Love and movement are powerful medicines. Call on your friends or family to help you get a dose of each.

Everyoneagrees that exercise and a proper diet are important for maintaining overallhealth. Staying fit reduces a person's risk for cardiovascular disease,diabetes, and improves muscular strength and endurance. This is even moreimportant for people dealing with cancer. Whether they have just been diagnosedor are in remission, staying fit means responding to treatment better,increased energy levels, and a higher quality of life. Unfortunately, exerciseis likely not to top the priority list of a cancer patient. The effects ofcancer, and cancer therapy, may leave a person with little energy or desire toexercise.

For active people, daily exercise and a healthy diet may already be habit. Theymay need to modify their exercise routines to fit their new needs, but canmaintain normal activity. People who are less active may find it difficult tofocus on fitness, especially if they have recently been diagnosed with cancer,but should consult their doctor and develop an exercise regimen and healthydiet.

Any cancer patient knows that treatment is heavily taxing on the body making itdifficult to find the energy to exercise. However, poor fitness and obesity areconnected to complications during treatment, increased risk of recurrence, andhigher mortality during and after treatment. Fit patients respond better totreatment and cope better with the side effects of cancer therapy. There isalso a growing body of evidence that indicates exercise and a healthy diet canactually prevent cancer. For cancer survivors, exercise and a healthy diet canhelp keep cancer in remission. For sufferers of lung cancer or mesothelioma, exercise canmean being able to maintain daily functionality. Light aerobic exercisemaintains and increases lung capacity leading to increased oxygen levels.

While the main focus of cancer treatment is on survivability, doctors are payingmore attention to improving quality of life. Exerciseand a healthy diet contribute significantly to increased energy levels andpositive outlook, helping cancer patients to cope with the rigors of treatment.Post-treatment, cancer survivors should continue to focus on staying fit. Dailyexercise and a balanced diet will help the body recover and prevent cancer fromrecurring.

Thank you so much, David. You have inspired me to make a new page where I have collected posts related to my exercise and cancer experiences.

Hasta la vista, baby

2011-12-04T15:11:00.001-06:00

On Friday I met with Dr. Oncologist for what was called my Survivorship meeting. This meeting occurred exactly one month after my last herceptin treatment. We reviewed all of the bodily changes that have occurred since the discovery of inflammatory breast cancer in October 2010. We also discussed the (or what should be my) primary concerns moving forward: the possibilities of recurrent cancer, heart problems, and lymphedema. (Note: I don't have heart problems, but any heart that has been through what my heart has now been through should be scrutinized and carefully maintained, apparently.)

These possible problems are just that--possibilities. I have none of these problems today, and I probably won't wake up with these problems tomorrow. So I'm just going to go about my life as usual; turns out I'm really really good at going about my life as usual. Dr. Oncologist has only four instructions for me to follow to try to maintain today's health status: no smoking, no drinking alcohol, keeping the body mass index (BMI) below 25, and exercising. These things should be no problem for me, although when I mentioned my new fondness of yoga and she said that that isn't the kind of exercise she's talking about. She means the type of exercise that gets my heart rate up. I guess I'd better find a way to start biking to work again.

Also at the survivorship meeting I met with the outreach nurse, who gave me 12 CD's full of tips for cancer survivors. I'll be sure to play those at our next house party. She also gave me a spiral-bound booklet of written tips for the survivor. These tips include many what-to-expect-when-you're-surviving tidbits like pre-menopausal symptoms, months of lingering fatigue, and emotional difficulties. Um, thanks, but this information would have been useful yesterday (in July). I physically and emotionally processed the bulk of my cancer treatment recovery and survivorship issues months ago. The booklet probably could have been useful at some point, but its delivery was poorly timed.

Needless to say, I am not suffering any cancer treatment separation anxiety. I have read that some patients are very sad to be done visiting the place that saved their lives, where they now have lots of friends and a fixed routine. They also get nervous that now they are back on their own with their bodies and are expected to find a recurrent cancer all by themselves. Maybe my separation from cancer treatment is too recent, or conversely maybe I went through this months ago when I was done with the hard cancer treatments, but currently I am not suffering any of these emotions at all. Indeed, when I walked out of my last herceptin treatment a month ago, I don't think I've ever held my head higher. I waved at the receptionists, all on their phones with actual cancer patients, and I strutted out of there, no longer a cancer patient.

So I'm officially a survivor now. I will miss my clinic cancer friends, but I'll still see them around. Indeed, I still get to go in every three months for PET scans, but eventually that will be every 4 months, and then every 6 months, until finally I just have a PET scan once per year. Like getting my eyes checked.

It's been a long time since I posted a song. I don't know why I haven't posted songs lately; I still love music. But this post is begging for a song. Only one song, really. In this song, I think the "I" is me, and the "you" is the oncology waiting room. Hasta la vista, baby.

I've said it before, and I'll say it again. Cancer can suck it.

The effect of antibiotics on swine gut microbiomes

2011-11-29T21:06:00.001-06:00

As promised, here is more information about the research of mine (+ lovely coauthors) that was published today. The below article was posted on the mBiosphere blog and was written by Merry Buckley (please use this original source when reposting). I am reposting it because it 1) has a cute picture, 2) gives a nice framework and summary of the paper, and 3) I am feeling too lazy to write my own synopsis for you. Enjoy!

Antibiotics stimulate gene exchange in swine gut microbes

Antibiotics: they’re not just for curing the sick. Livestock farms in the U.S. regularly use antibiotic drugs as feed additives to boost animal growth, but a study in mBio this week reveals new evidence that adding antibiotics to pig feed stimulates gene exchange in the guts of these animals, a development that could move antibiotic resistance genes where they’re not wanted.

Using antibiotics in animal feed saves farms money, but opponents argue the practice encourages antimicrobial resistance among bacteria that could well be consumed by humans. Today, livestock producers in the U.S. use an estimated 24.6 million pounds of antimicrobials for nontherapeutic purposes every year.

The study by Allen et al. adds to what we know about what happens to the microorganisms that populate animal digestive tracts when they are exposed to these low, persistent levels of anitbiotics. Researchers at USDA’s National Animal Disease Center (NADC) in Ames, Iowa studied how two in-feed antibiotic formulations affect prophages, segments of DNA found in bacteria that can encode antibiotic resistance genes and other genes that impact bacterial fitness. Prophages can cut themselves out of the larger chromosome of DNA in a process called induction, then replicate and package themselves as viruses. These viruses explode the cell from the inside, then move on to infect other organisms and deliver their genes.

Lead author Heather K. Allen says when pigs were fed antibiotics, the actual numbers of antibiotic resistance genes carried by the phages remained steady, but the microorganisms still reacted to the presence of antibiotics. Prophages underwent a significant increase in induction when exposed to antibiotics, indicating that medicating the animals led to increased movement of prophage genes among gut bacteria.

“Induction of the prophages is showing us that antibiotics are stimulating gene transfer,” says Allen. “This is significant because phages have previously been shown to carry bacterial fitness genes such as antibiotic resistance genes.”

Studies that explore the impacts of in-feed antibiotics most often focus on the bacterial residents of the gut, according to Allen, but phages and other viruses move a significant amount of genetic information around the community. This makes changes in prophage induction an important collateral effect of antibiotic treatment, she says. Resistance genes are the unit of currency among microbes experiencing the duress of an antibiotic, so following the movement of genes is arguably more important than following certain changes in bacterial communities. And if bacteria in humans acquire resistance genes from animals, there can be serious health consequences.

“What’s important is the transfer of a gene that could get into the wrong place at the wrong time,” says Allen. “Increased gene transfer is a critical event in the evolution of gut bacteria.”

A breath and...breathe

2011-11-28T21:00:00.001-06:00

photo by Sam

For me, the best parts of the holiday season are spending time with loved ones and taking a break from the usual routines. I took a break from this blog (thank you for tolerating that) and from work, both of which were refreshing and much needed.

November got so crazy! It started off with two scientific presentations, one here and one in The Netherlands, and ended with a holiday. In between I had to review proofs of a manuscript that has my name on it and is being published tomorrow, go to Iowa City for a surgical follow-up, and be interviewed for a press release regarding the aforementioned manuscript. I almost forgot to re-up for yoga, that's how discombobulated I was with all of these unusual tasks.

But I most certainly did sign up for another five weeks of yoga. I must stay centered and stretched.

The surgical follow-up involved many mammograms of the right breast. Suspicious shadows were noted, due to the scar tissue from the needle-localized biopsy last April. Suspicious shadows were further visualized by ultrasound and palpated by radiologists and surgeons. Importantly, Dr. Surgical Oncologist is not at all concerned and is certain that the suspicious shadows are scar tissue. I, too, am certain. Unfortunately this scar tissue will probably always be there, so I will probably always have extra -grams and -sounds and -scans. An irony that a procedure to remove suspicious breast tissue left perpetually suspicious breast tissue in its wake.

After the appointment but before returning home, I had lunch at Masala. All vegetarian Indian food buffet, all delicious. I will say that it was odd to eat at a buffet by myself. I enjoy (dare I say "savor"?) time alone, and I don't mind dining alone, but adding the buffet variable made things less enjoyable. I found that I ate altogether too quickly and had trouble timing the second trip. It's hard to slow the pace of consumption when there is no one to visit with between bites.

Regarding the work things, the manuscript should be coming out tomorrow, and someone at the journal thinks it's a cool article. So she decided to write up a press release for it, and interviewed me over the phone. I was quite nervous because I've never been interviewed for my science before. I felt a lot of pressure to say things perfectly, which made me say them horribly imperfectly. But I survived, and I'll do better next time. I'll post the manuscript when it's available, and I'll save the summary of the science until then. Needless to say, the hub-ub surrounding getting this article out has felt intense and distracting.

Thanksgiving, therefore, couldn't have been timed better for me. I needed to take a deep breath, step away from my month of diverse yet pivotal events, and just breathe for a few days. I spent excellent time with the usual family...

photo by Sam

...and with family from afar. I played games, I made deviled eggs, I went to playgrounds, and I stitched the last stitch of Eleanor's Christmas stocking. This last item is significant because I worked on it during nearly every Herceptin treatment these past 8 months. I suppose it's a bummer that I will always think of chemotherapy when I look at that dang stocking, but it was a great task to have during that time.

Which reminds me, the Wednesday before Thanksgiving was my first free third Wednesday in one full year. That is, it was my first Wednesday free from Herceptin treatment when I should have been receiving Herceptin treatment. That deserves a celebration and a blog post unto itself.

Hopefully I will carry the rejuvenation from the holiday weekend for several days, if not weeks, to come.

Was your holiday pleasant, if not fantastic? Did you have a moment to breathe?

The Netherlands

2011-11-18T21:51:00.001-06:00

I arrived in the Amsterdam area airport with 24 hours to spend before conference time. My conference was providing free shuttles from the airport to the conference town (Egmond aan Zee), so I opted for an airport-based tour of Amsterdam. Best 50 euros I've ever spent.

The tour lasted 2.5 hours and was given by a fabulous guide in a small van. It was nearly a personal tour, as there were only two patrons. We made several stops in and around the city, including by the I amsterdam sign (get it? I [am] AMsterdam?)

Amsterdam is full of canals, such as the one below. Indeed, the whole country is full of canals. Did you know that if it weren't for enormous pumps operating 24/7, nearly half of the country would be under water? The famous Dutch windmills used to be the primary water-expelling mechanism for the country, but now they have some impressive technologies to do the job. The Dutch are hydraulic experts; New Orleans should give them a call.

We also drove past Anne Frank's house, the royal palace, the harbor, and the red light district. I saw three ladies in windows. But the highlight of the tour was stopping at a small farm to see how they made cheese and wooden shoes.

The Netherlands is a flat and agricultural country, and very picturesque. I saw many different types of crops and livestock. The occasional windmill dotted the landscape. According to Fabulous Tour Guide, only about 100 of the classic Dutch windmills remain, and although they are not operational they are preserved. The strategy for upkeep is to let people live in them rent-free as long as they take care of them. I saw a man out tending his windmill's lawn on a Sunday afternoon. A clever solution to a historical preservation problem, but bizarre nonetheless.

Immediately upon arrival in Egmond aan zee I headed for the beach. It was less than a block from my hotel and visible from my room. The sun was setting and I just couldn't wait to take it all in.

The view of the town from the beach.

In the morning, I still had a few hours before the conference was to start. So I decided to rent a bike and explore the area. Finding the bike shop pretty much introduced me to the whole town, so I was more interested in a country ride. I found a few maps, mostly in Dutch, and was nearly dissuaded from the seemingly complicated navigation of a country ride. Instead I tucked the maps in my backpack and just started riding. What a marvelous choice! There are bike lanes or paths along every road, and it turns out that my chosen route was the Prince's Route (or something) and therefore clearly marked. It was very beautiful, even in the slight fog.

The route paralleled a national forest/sand dune preserve. I was lucky to see so much nature in a small country of 15 million people.

And then the fog lifted as I rolled into Bergen aan zee, the town just north of Egmond aan zee on the coast.

So of course I had to park the bicycle and explore this beach as well.

I pedaled back to Egmond aan zee, returned the bike, and was only 20 minutes late to the conference. Nice! The rest of the time I worked very, very hard and took virtually no more pictures. Save one. Across from my hotel I realized that there was a tall dune with a path leading up it. So during one of the conference breaks I scurried up to explore. Below is a panoramic of the town. Notable landmarks from the left: my hotel, the lighthouse, the church in the town square, and the church by the bike shop.

A fast trip, but a great trip.

I'm in the Netherlands!

2011-11-14T20:00:00.000-06:00

In March my boss was invited to give a seminar at a conference in the Netherlands in November. He was unavailable, so the conference settled for a replacement speaker: me. It was a lengthy process to get all of the ducks in a row, but a mere six weeks ago the dust settled and my flight itinerary appeared in my inbox. I guess it's official.

I'm giving a presentation on alternatives to agricultural antibiotics. I won't post my slides, but I will post a link to my accepted manuscript (huzzah!) that I'm heavily summarizing, when it becomes available.

The conference doesn't start for a few more hours, and I've been enjoying myself immensely! The conference is not in Amsterdam, but I wanted to see Amsterdam, so here is the tour that I wanted to take:

Do be do be do! Unfortunately this tour was cancelled due to a festival celebrating the original Santa Claus. But I found a different tour that was FANTASTIC. It included a few quick stops, including a tour of a cheese factory. It was a quaint little farm where we spoke with the 8th-generation cheese maker. Huzzah for keeping the business in the family for so long!

I'm off to see if I can rent a bicycle for an hour or so. This country has bike paths flanking nearly every major road, and bike lanes on nearly every non-major road. Incredible.

Image

2011-11-10T20:00:00.000-06:00

"As I child I had expected my liberation to come from getting a new face to put on, but now I saw it came from shedding something, shedding my image."--Lucy Grealy in Autobiography of a face

I read the most remarkable book, cited above. Ms. Grealy was diagnosed with Ewing sarcoma in her jaw when she was nine years old. Her jaw was removed from one side of her face. She underwent 2.5 years of weekly, debilitating chemotherapy and a year or so of concurrent radiation. She survived.

The obvious and fascinating point of the book is to present what it is like to go through virtually your entire life, the teenage years in particular, with such a dramatically unique face. She underwent nearly 30 attempted reconstructive surgeries over 18 years. She developed numerous psychological tricks to cope with these physical and emotional hardships. In particular, she coached herself that she was ugly.

She decided that she had to tell herself that she was ugly in order to cope with the teases dished out by boys and men (at some point she states that girls and women never taunted her). The following is my interpretation, but it seems that rather than undergo an internal counter-argument, it was more effective for her to agree with them. I think I can understand this logic. If you tell yourself that you know you are ugly, a tease is no longer a tease but rather a pointless declaration of the truth. I can see it as a survival mechanism at the expense of one's self-esteem.

The hardest part to read about is her disappointment with the reconstructive surgeries. They all failed because her tissue was so severely irradiated that the transplanted tissue would not "take". It would simply be re-absorbed over the course of several months, and she would be left with her lack of a jaw line in spite of the lengthy, painful attempt to restore it. With each reconstruction, her hopes to no longer be "ugly" would rise, and with each failure she would recede farther from society.

In the end she had accepted an end to the surgeries. The last attempt seemed to have a slightly better cosmetic outcome than all of the previous attempts. But she couldn't reconcile that the face she saw in the mirror was actually her face. This is because she had gone her whole life looking the way one looks without half of a jaw, and now that it was at least partially corrected she didn't look like herself. But apparently she looked more acceptable to society? So as she tried to reconcile this paradox, she avoided looking at her reflection for over a year. Avoiding her face helped her accept that she had a face; she was no longer waiting for her face to be constructed.

It's a beautiful book with a universal message: you are beautiful.

"Why couldn't they just stop complaining so much, just let go and see how good they actually had it? Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest." --Lucy Grealy, Autobiography of a Face

A prosthesis at last, just in case

2011-11-07T21:59:00.000-06:00

I am now the proud owner of a prosthetic left breast. The breast doesn't actually have handedness, but since I only have a spot for it on my left side I define it as a left breast. It is triangular in the two dimensions that are flush with my skin, and teardrop-shaped in the third, protruding dimension. It is pleasantly squishy--a bit more firm than a gel-filled ice pack but more pliable than rubber.

These descriptions will have to suffice for now because I decided not to photograph it yet. I didn't know how: do I lay it on the table? Do I hold it up to my chest? Do I let my smiling children hold it up for the camera? I don't yet feel emotional ownership for this left breast and so any of these options seem satisfactory on one level, but on another level I don't want to accidentally disrespect the left breast in a careless photographic portrayal. And so once again I rely on my words.

Acquisition of my prosthesis was surprisingly tedious. It took five different fittings to get the correct breast-bra combo. We first had to special order some prostheses. The cancer outreach center did not stock any prostheses in my size, although I can proudly say I do not require the smallest prosthesis available (just the second smallest). Then the shape was an issue, so we had to order the decided size in a different style. Then the bras were the issue. With a prosthesis, one typically wears a special bra that has a pocket for the prosthesis. One can probably wear a prosthesis in a normal bra, but the pocket is nice to keep the prosthesis in place and to protect the skin from rubbing on the somewhat sticky prosthesis. So I tried many, many different pocket bras. It was difficult finding a bra that was complementary to (if not equalizing of) the prosthesis and Ms. Right Breast. At long last we found one bra-breast combo that actually worked well. Unfortunately, this bra was a rather impractical blue. It is and will always be my first prosthesis bra, but we also settled on an imperfect fit in order to include a practical champagne-colored bra in my prosthesis-wearing repertoire.

At first I was excited to have a prosthesis option available! I slipped the breast in the pocket and put on the bra. I was a bit self-conscious about choosing to wear a breast to work that day, so I chose a shirt that I presumed would hide the prosthetic breast just as I rely on it to hide the empty space. And indeed I may have hidden it well. I received no comments, but why would I? What would someone say, regardless of if it were positive or negative? "Did you get a new breast? It looks great!" or "Did you get a new breast? Hmm, you should get your money back." It was false to imagine I would get affirmation for my choice to wear a prosthetic breast one day. But I kept hoping for it as if I were sporting a new pair of glasses or shoes. Also disappointing was how much I hated wearing a bra again. It was the first time I'd worn a bra in months, if not a year. I had forgotten how many millions of places it pulls and rubs and hikes and heats.

Needless to say my shiny new prosthetic left breast is tucked away in its special box, in its original bag. The scratchy new bras are stuffed into my overflowing (um...why?) undergarment drawer. But they are at my disposal should I ever desire to increase my physical discomfort at the expense of my emotional comfort. Maybe at a wedding reception with an open bar I can reconcile this dichotomy.

Freedom

2011-11-01T21:44:00.002-05:00

This is it. I finally made it to the eve of the end of my cancer treatments. Tomorrow is my last herceptin therapy. I will get my energy back, I will get my third Wednesdays back, I will get my freedom back. Despite the momentousness of the occasion, I am entirely underwhelmed by Tomorrow. This surprises me because I thought I would be unable to contain my excitement. On the contrary, my excitement is entirely contained. Per usual, I think this deserves an analysis.

I have read that cancer patients sometimes have a hard time ceasing therapy because they have grown attached to their caregivers. Also, patients wonder how they can possibly return to life without cancer. These feelings can sometimes turn into depression. I think it remains to be determined if I will be susceptible to this, but I don't expect depression to be a big factor. I will still see Dr. Oncologist every three months for PET scans. I will still see my favorite nurse around town with her son. And I can't WAIT to return to life without cancer. Cancer made me needy, and I don't like being needy. Sign me up for self-sufficiency, please!

Right now my lack of enthusiasm for tomorrow seems to be related to something I've posted about before, which is accomplishing a goal that I never should have had. Also, I'm feeling a strong urge to get cancer treatment out of the way so that I can get back to Living. I acknowledge that getting to this point was no small feat, it's just hard to embrace a celebratory mentality given the subject matter. I guess I would say that I successfully toughed it out. Yay?

But there is something that I was inspired to celebrate tomorrow: my oncologist. She is brilliant and caring and attentive and thoughtful. Any guesses what I did to show her my appreciation? That's right. I made her a blanket.

It's my 12-hour afghan pattern and it makes the coziest blanket in the universe. For Dr. O I chose three oceanic shades of blue because I envisioned the blanket providing a wave of calm and warmth after a long day of helping sick people. THIS is where my excitement lies: in giving her this blanket.

In related news, during the making of this blanket I acquired a protege. It was only a matter of time, really.

Go, Azalea, go!

I'll end this post with a premature poke tally. It includes both tomorrow's and the previous herceptin poke, plus the PET scan poke. I suppose that this is where the poke tally ends? I must say, I am grateful for that port, otherwise the poke tally would be much, much higher. Possibly even doubled. Port, I'm not going to make you a blanket, but I appreciate you.

port 40

right arm 13

tummy 6

left arm 6

right breast 2++

left breast 1+

superior vena cava 1

T9 vertebral body 1

A certain proclamation was signed

2011-10-27T21:20:00.000-05:00

It was a beautiful day to walk the grounds of the capitol.

The grounds include a remarkable veteran's memorial.

I had forgotten just how fetching Iowa's capitol is, both outside and in.

Then we went into the governor's office for the signing. All 20 of us crowded around him as he read the Inflammatory Breast Cancer Awareness Week Proclamation aloud from his desk chair.

(Thank you, Andrew, for the movie.)

After he read it, he signed it.

Then we gave him some shirts.

A good time was had by all. What a change from October 27, 2010, when I had a port placed and started chemotherapy. Thank you to everyone who came out to show your support, especially my high school AP biology teacher, Mrs. Stroope. You are all really something.

Something's spreading, and it's not cancer

2011-10-25T22:37:00.002-05:00

Knowledge of inflammatory breast cancer is spreading.

For my birthday, my mom sent me the New Mexico Inflammatory Breast Cancer (IBC) Awareness Proclamation. Framed. Great job, mom!

On my birthday, my cousin knuckle-bumped with the Governor of Nebraska as he handed over an IBC Awareness Proclamation for that flat, I mean great, state. You rock, Bec!

My dad, stepmom, and sisters designed some lovely IBC awareness long-sleeved running shirts that we're selling for $20 (sizes men's M-XXL). We'll donate the profits to the IBC foundation (after we order some more feminine sizes; I'll alert you when they're available). I'll have to figure out a better way to handle the orders, but for now just email my sister (hollyasman at gmail dot com) if you want to make a purchase.

And today a woman from the local medical clinic interviewed me for an article about IBC and the Iowa proclamation. I independently sent out a press release about the proclamation-signing that will take place on Thursday, but the interviewer said that she would also write a release. We'll see if anyone picks it up.

One of the questions in the interview was why I'm doing this. Not that I'm doing anything alone, but I think she meant why I'm putting so many personal details out there (here) and spending so much energy on advocacy. The obvious answer is because I want to educate others on the very existence of this disease. If folks know about it, they can push for the appropriate medical steps to ensure an early diagnosis of a suspicious breast, decreasing the likelihood of deadly metastases. (It's not cancer in the breast that kills a person; it's cancer that spreads out of the breast to the brain, lungs, or liver.)

The less obvious answer is perhaps self-serving: catharsis, fun, and intrigue. It helps that I'm relatively brave (you only live once!), and that I'm a fast typist. Blogging isn't an enormous time investment for me. But if I keep up the current pace of blogging and advocacy, I'm going to be in serious need of a housekeeper.

I'd like to end with a shout-out to my awesome family for the surprise birthday party last night. It was my first surprise party, and indeed I was surprised! Who knew 31 could be so incredible?

All clear

2011-10-21T15:49:00.001-05:00

PET scan results: CLEAR

Right breast = clear
Sternum = clear
T9 vertebral body = clear
Lungs = mostly clear. 7mm node gone, but a few other tiny infectious-looking particles. Go, immune system, go!

And I will officially live to see my 31st birthday on Monday. Thank you, Dr. Oncologist.

Coping with Crap 101

2011-10-20T21:19:00.000-05:00

My place of work celebrates numerous observances, from black history month to gay and lesbian awareness month. A few weeks ago, a scientist at work approached me and asked if I'd be willing to be the breast cancer awareness month speaker. I hesitated only momentarily before agreeing to do it. I thought it could be fun. So I invited one of my nurses to co-present with me, and our presentation was yesterday. Needless to say this is why I haven't had time to compose a blog post this week.

This marvelous poster was made by a talented artist at my place of work to advertise within my place of work.

Oh my goodness I felt like I was doing a live sketch of a Lifetime original movie, complete with moist, red eyes in the audience. It was also a lecture in Coping with Crap 101.

In the days before the presentation I was really nervous. My scientific colleagues can attest that I no longer get very nervous before a typical public speaking event. This, however, was oh so different.

This presentation was so personal, and I didn't really know what details people would want to know about. With science I can find a punchline, and people will learn what I want them to learn. In presenting my journey through breast cancer, I didn't want to presume that I was the only one in the universe to have taken this journey, but I also wanted to educate the young people who might have no clue what goes on with cancer treatment. Turns out that's a fine line to walk.

So, I tried to keep it a tad bit scientific. This is of course what I know how to do. My nurse presented first and laid the groundwork for the different types of cancers and what the details mean. When it was my turn, I framed what I was going to tell them as a breast cancer case study in the context of what my nurse taught them. I tried to step away from myself, otherwise I was sure to sob my way through it.

But sob I most certainly did NOT! I even snuck in a few jokes, which was easy considering I chose to include such delightful cancer bonuses as the sinus UFO and my original displeasure with the port. I did get choked up at times, mostly when I thought of my own mortality or everything my loved ones did for me throughout the ordeal, but I was able to power through. Also, a new thing for me was to include "readings" in my presentation, and these were from my blog. Wow was it handy to have this treasure trove of insights in real-time. I chose five portions of posts that I thought were salient thoughts from a given time, and I read them aloud at relevant points in my presentation of slides. (Thank you, Martha, for inviting me to read at your wedding so that I could gain some experience in the public reading department.)

When it was my turn to present, my nerves were totally silent. That's standard for me. My nerves just know that there's no turning back now, so why be that person with the jittery laser pointer? May as well calm down and save some face.

Afterwards, however, the nerves spiced up again. For many hours I couldn't figure this out, because after a presentation is over I should be overcome with relief. But here's what I've figured out: the presentation made me re-confront the gravity of my former disease. On an ordinary day in my marvelous life, I spend exactly zero seconds thinking about 40% chance of blah blah blah in 2 years, only 40% median blahsey blah in 5 years. But that dang presentation made me think about all of those horrible, horrible statistics, and to realize that year number one is already over (happy cancerversary to me, today in fact). Needless to say it took me until bedtime last night, with some furious playing and crocheting in between, to get a grip on my heartbeat.

Speaking of my nervous heart, I have a PET scan tomorrow. Yay if it comes out clean, boo if it doesn't. I won't know the results right away, but I'll post them as soon as possible. We are hoping: T9 is still clean, that a certain 7mm node in my left lung has mysteriously disappeared, and that there is NOTHING NEW. Geez I hate PET scans.

Music to my mind and muscles

2011-10-14T20:49:00.001-05:00

Months ago my friend Ainslie recommended yoga as a therapy to help both my mind and body recover. I've never done yoga, and indeed I thought I would hate yoga because I am lanky and inflexible with relatively bad knees. But I'm a new person now, highly divergent from who I was before cancer. And as the weather turns, I'd like a mechanism to get out of the house and exercise. Maybe I'd like to give yoga a try, once a week for five weeks?

I found a yoga studio just downtown, within walking distance from our house. It is a private business with only one instructor. It thought that this would be a promising way to get into yoga, because if I'm going to hate yoga I don't want it to be because of a poor-quality experience. I'd rather give myself a fair chance to like yoga by taking it from someone who Lives yoga. And let me tell you, the instructor seems to Live yoga. She is fantastic!

I've only attended one session thus far, but preliminarily I love yoga. In just one session something under my scar popped and I have slightly increased range of motion. It was wonderful to have some direction from the instructor in terms of pushing my body; I think I am a bit of physical coward when I am stretching by myself at home. The direction revealed that I am not very strong in the right places, so it will be awhile before I get the hang of the breathing and the posing. I definitely did a lot of quaking the first time. I am greatly looking forward to getting strong in the right places! And maybe I will gain back the inch of height that I lost as a result of two pregnancies. Ainslie said that she gained an inch in height after only a few weeks of yoga. I don't really need to gain an inch like Ainslie did (she is adorably petite), but if a girl's gonna be tall she may as well be 5'11" rather than 5'10". At 5'11" I'll make better use of these enormous feet (aka stabilizers).

In addition to the physical aspect, yoga is a mental exercise in releasing stress and anxiety. I tend not to carry much of either around with me, but I found that I enjoyed the mental yoga almost as much as the physical yoga. It was relaxing. More importantly, it was wonderful to have permission to think about nothing for a whole hour. Rarely do I give myself permission to think about nothing: if it's not the kids it's the science, if it's not the science it's the chores, if it's not the chores it's the blog, and so on. Turns out that I enjoy thinking about nothing.

My yoga instructor also sprinkles the nothingness with pleasant nuggets of thoughts. I scurried to write this particular thought down as soon as yoga was over:

"...letting go of the illusion or dream that you're perfect, and settling into your natural state, which is imperfection..."

I am certain that this comment came from the universe, ensuring me that I was in the right place. I have been thinking a lot about the natural state of imperfection lately, primarily in the context of physical beauty. When I had two breasts I did not think that suffered the illusion that I was perfect, but the fair bit of mental energy I have spent settling into my new natural state of having one breast indicates otherwise. Perhaps I have a leg up on my fellow yoga-ers because I am actively engaged with settling into my imperfection. And perhaps yoga will help me to settle more comfortably.

Darn those things

2011-10-10T09:29:00.001-05:00

I apologize for the inconvenience, but the IBC awareness proclamation signing has been moved to Thursday, October 27th at 1:45. Attendees should arrive 10 minutes before the signing. If you want to come, please RSVP to hollyasman at gmail dot com.

I continue to be amazed by society's lack of respect for breasts, real or fake. My friend Torey just sent me a link to this news article describing a woman who was embarrassed by airport security. She survived bilateral mastectomy and had tissue expanders in place prior to future reconstruction. This is a standard procedure for certain types of reconstruction because you can't just make a breast out of nothing; you either need to add tissue from other places or stretch the tissue that is there. For the latter procedure, a plastic surgeon inserts this hard, fill-able pocket under the pectoral muscles and gradually injects saline over the course of several weeks until the new "breast" is of the desired size. This is pocket is called a tissue expander, and it is replaced by a saline or silicone implant after the expansion is complete.

These tissue expanders must have looked unusual on the x-ray, perhaps even bomb-like, and this poor woman was more or less harassed about them although she had proper medical documentation. The officials did not allow her to present her documentation and insisted on feeling her up in front of the other passengers. I can think of so many reasons that this would be awful, public humiliation aside--the breasts themselves were probably quite sore, and the woman is in the midst of a difficult breast transition period both physically and mentally. Poor thing.

Isn't it ironic that her real breasts were real and cancerous bombs, but her reconstructed breasts were the ones accused of suspicious activities?

Happy Birthday, Azalea!

2011-10-06T22:46:00.001-05:00

My big girl turned four years old yesterday. Weeks ago when I asked her what she wanted to do for her birthday, she said she wanted a party at Grandpa Russ's house. Well, there's already going to be a party at Grandpa Russ's house this month (Halloween weekend, costume party, you should come), so I asked her to make a second choice. She chose bowling. I must say, this was a Working Mom's dream come true to not have to clean the house or cook a meal. Make a reservation, send invitations, bake a cake, DONE.

We collected the lightest balls in the alley, but they were still quite heavy for 2-4 year-olds. We therefore borrowed the ramps that enable folks in wheelchairs to participate in the joy that is Bowling. The only challenge was keeping Nori from trying to use them as a slide.

Azalea got a spare on her first roll. I'm not sure if the photo below is of her spare, but note that her feet have left the ground in celebration of pins knocking over.

For weeks I had been asking her what she wanted for her birthday, and all she wanted was chocolate cake with chocolate chips and M&M's on top. So that's what we got for her. In fact, she and Eleanor helped me make the cake the night before, so I suppose it's like she made that present for herself. Her delight was boundless.

The kids were bouncing off the walls before the cake. With the cake consumption came a few peaceful moments. Then the kids were bouncing off the walls again. Present opening, however, was a sober affair. Everyone was curious, attentive, perhaps even critical.

Now that our bowling, eating, and opening was complete, it was time to take that bouncing to the house. The bouncy house, that is. Our local bowling alley has a free bouncy house in the back, and it was a great way to cap off the party.

Thanks to Nadia's mom, Akiko, for the wonderful pictures. Thanks to everyone for a great party.

Azalea, you are a wonderful daughter. So clever, so silly, so sweet. I hope you had a great birthday!

Love, Mom.

One cancer, three state proclamations

2011-09-30T19:47:00.001-05:00

The other day my sisters gave me the best surprise I've ever had. I was blindsided by their thoughtfulness, dedication, and ability to keep it hidden from me for so long.

My sisters Holly (left) and Hilary. Yes, they are identical twins.

They saw on the Inflammatory Breast Cancer Foundation website a section about state proclamations. Here they learned that six states have signed proclamations to have an Inflammatory Breast Cancer (IBC) awareness week. They contacted the president of the foundation to find out what to do to get a proclamation in our state. Who knows what they had to do or how long it took them (maybe they can comment on this), but thanks to my sisters the governor of the state of Iowa is going to proclaim an IBC awareness week! He's going to sign the proclamation on Thursday, October 27th at 1:45 pm (note the day and time change) in the capitol. My sisters and I will attend, hopefully with some of my fantastic physicians.

Not only did they pursue this proclamation in Iowa, but my cousin is working on Nebraska and my mom secured New Mexico just this past week! One cancer, three states! The best part is that it takes 10 state proclamations to force a national proclamation. New Mexico was state #7, Iowa and Nebraska will be #8 and #9, and someone we don't know is close to getting California...#10!

I am just so proud of my sisters and these proclamations. I can't write about this without tearing up.

An IBC awareness week might seem to some like political window dressing. It's not. IBC is a vicious, aggressive cancer, but it is largely treatable if it is caught early. The problem with catching IBC early is that most physicians don't even know about it. My experience with trying to get a diagnosis for what turned out to be IBC is so similar to what other women have gone through. Women need to be aware of IBC, men need need to be aware of IBC, and of paramount importance is educating the physicians about IBC. Perhaps an IBC awareness week will stimulate some learning.

Thank you, sisters.

Cancer can suck it or bite me or whatever

2011-09-27T21:42:00.002-05:00

It's that time of year when Federal employees are evaluated for their performance. A performance year runs from October 1 through the following September 30. Last week I assembled all of my accomplishments and attempted accomplishments into one 3-page bullet-ed list. At the risk of being egotistical, I am going to share a portion of this list with you.

I spent a lot of time debating whether or not to write this post. You see, I want to share my excitement over what I was able to accomplish this year IN SPITE OF cancer. I want to write this post and tell cancer to shove it. I want to show the world that I am still a productive human being even though I went through this brain-killing experience. I want to inspire future patients. However, I don't want to be too prideful. I want to stay on the good side of the line between self-confidence and egotism.

But at the end of the day, I'm pretty dang pleased with myself, so let's just give me this one post to gloat a little bit, please? Thus far in 2011, my collaborators and I have 5 publications that are either published (1), accepted (2), or submitted (2). I just submitted one of the papers today. Wow did that feel good.

This is more than I've ever had in a single year, and it happens to be the year of the cancer. I get all misty-eyed just thinking about the dichotomy between the above list and what I've been through.

Huzzah and boo-ya and virtual high-fives to everyone! YES you may buy me a drink.

Cancer can suck it.

Revealing

2011-09-22T22:14:00.002-05:00

Martha totally called me out in the comments to the previous post. She said that she would like to see a picture of the new haircut with, well, more of the haircut in the picture. This is not an unreasonable request. I did not post awesome pictures of the haircut because the ones we took at the salon make me feel ridiculous. Also, now you'll know what my hair is Supposed to look like, although I have yet to achieve this level of stylishness with my own two hands. But at this point, what do I have to lose?

One thing of which I was previously ignorant is the issue of styling your hair around the glasses stem. I used to just put on my glasses. Oh no no no no, not anymore. My stylist taught me how to use the comb to release the hair from the clutch of the stem, laying much of it gracefully over the top while leaving just enough underneath. Ah, short hair, will I ever pass all of your lessons?

While we are here, I will divulge that before my Herceptin therapy yesterday I got fitted for a prosthesis. I figured even if I never wear it, I may as well get fitted for it before I lose the prescription. The fitting was not unlike trying on shoes except that instead of taking off a shoe, I took off my shirt. Then the nurse who works in the Cancer Center Boutique helped me chose the correct prosthesis and try on countless bras. Choosing the prosthesis was the easy part because we just matched it to the existing breast. But I had to try on countless bras to find the right one for the right breast, the left prosthesis, and my 30-year-old self. See, the prosthesis requires a special bra that has a pocket in it. I guess you can't just set the prosthesis in a normal bra or it might just leap out of there. Because of this need for prosthesis security, these bras all seemed gigantic to me, and a far cry from my old bras. But whatever. It's not like I had cleavage or anything interesting before. Besides, I'm rather enjoying the no-bra lifestyle.

The prosthesis itself is made of silicone and is kind of cool; I will post pictures when it comes in. The nurse had to special order it because she didn't have any small enough for me. I always joked that my cup size was a lower-case A...turns out I wasn't far off the mark. I am indeed less than an A, but they call that size a double-A, not a lower-case A. So my double-A silicone breast is on order. I wonder if you can get those through Amazon?

Poke tally

port 38 (I only have two herceptin treatments left!!!!)

right arm 12

tummy 6

left arm 6

right breast 2++

left breast 1+

superior vena cava 1

T9 vertebral body 1

Order

2011-09-19T22:40:00.000-05:00

I got my first haircut last week. It was my first haircut since I was bald last spring. Now I have a trendy hair-do instead of a dandelion puff.

(rockin' the new haircut at the apple orchard)

I waited and waited for this haircut, despite the developing mullet, because I was so afraid that the stylist would cut off too much. Indeed, she shaved my neck down to bald, and probably cut half of the length in many strategic places. Now it resembles my June hair-do, with some parts a bit longer. And next time some more parts will be longer. And the next time, longer. Until...

(rockin' some long hair at the same orchard last year)

It was strange to part with this hair that I have cultivated since being bald; the lengths of hair that were cut were with me all through chemotherapy. The longest strands were the ones that never fell out. I didn't exactly feel sentimental about this hair (it was pretty damaged, and chemotherapy does not conjure fond memories), but I felt like I should have said a few words to let it know that I appreciated it. Those strands fought hard for their place on my head, and they tried to keep me warm when no other strands would.

Another feeling that led to the disquietude of the haircut is that I yearn for longer hair. I don't look like myself with short hair. I can't explain it, but there is a disjunct between how I feel and how I look. When I think of myself, I still think of a girl who should wear a ponytail from time to time. My ponytail ghost is long gone (I had one for several months), but I still miss the feeling of hair brushing on my neck. Also, it is no minor variable that the short hair makes me look like my brother. Perhaps if I didn't look exactly like a confirmed dude, I'd be more comfortable with short hair.

This all got me to thinking about why I was cutting my hair. If I'm so anxious for it to get long again, why would I cut it? For beauty? That doesn't seem like something I'd do off-hand. For order is more like it. I wanted to bring order to the disorder, or as my husband likes to put it, look like I have a PhD.

But sometimes, isn't order beautiful? NPR did a story about a Swiss artist named Ursus Wehrli who photographs jumbled up things

and then organizes them.

My hair is no work of Wehrli (although I'd like do see what he'd do with it!), but his way of organizing things really is beautiful. The other thing that struck me about his work is how beautiful the chaos is before he organizes it. So I will proceed in a brief state of ordered hair, until my next haircut in six months saves me either from the brink of hair pandemonium or a mullet, whichever is worse. And I'll be beautiful the entire time.

The power of suggestion, in three acts

2011-09-14T22:36:00.002-05:00

This is not the post I sat down to write, but witnessing the events unfold might give us something interesting so I'm going to roll with it.

*********************************************************

ACT I

I am feeling extremely nauseous right now. I'm not even kidding. I might have to take a break and step outside for a moment. Okay, I got a glass of cold water and threw the hat across the room. That's a little bit better. I wonder how long it will take to pass?

No, it is not something I ate. No, I am not coming down with something. All I did was put on a crocheted stocking hat, and within 30 seconds I needed to sit down or puke or both.

See, it's chilly in the house because the thermometer is on its way down to 36F tonight. Although I have a fair bit of hair now, it is short, and as my neck got chillier and chillier I thought I'd put on one of my favorite crocheted hats from cancer treatment rather than turn on the furnace. Mistake! The nausea came rushing in. I'm still having trouble shaking it. I might have to eat a piece of chocolate zucchini cake just to show my body who's boss.

What a horribly powerful response from a seemingly innocuous accessory.

I think it's clear that my body is associating the crocheted hat, or perhaps the feeling of a head covering, with the side-effects of chemotherapy. I wonder what I can do to get over this. Is this yet another thing that I just have to power through, boldly wearing hats until my gut is desensitized? Between the passage of time and the colder weather necessitating hat-wearing, I hope to overcome this nausea-induction soon.

*********************************************************

ACT II

The girls have been exceedingly tricky at bedtime lately. Other words for tricky include naughty, argumentative, manipulative, crabby, over-tired, whiny, and pesky.

Eleanor's thing is to persistently get out of her bed. She has always done this, but the problem has been exacerbated since starting daycare. No, it has nothing to do with them, it's me. I pick her up and cuddle her back to bed where I used to just lead her back to bed. I used to just be able to steer her head back to bed, but with the advent of daycare I miss her and want to make sure she's getting enough love. So when she wanders out of her room to find me, saying "Want to cuddle? Want to cuddle?" I melt. I cave. But this short on-the-walk-back-to-bed cuddle-tease just makes her more persistent.

Azalea's thing is to never have anything quite right. Mom, the water bottle isn't full. Mom, my pillow's not good. Mom, my sheet is neither covering my foot nor abutting my bed rail nor laying precisely parallel to the long edge of my mattress. These things go on, and sometimes she works herself up into hysterics for no reason at all and is inconsolable. This is all happening, mind you, while Eleanor is escaping and returning.

With Eleanor I had a good idea how to solve the problem (don't pick her up, idiot), but with Azalea I was a bit lost. I consulted the best child-rearing book ever and learned that one strategy might be to make sure she feels safe in her room. She might be stalling, and upset about failed stalls, because she is feeling insecure about some element of going to sleep. Also, this book reminded me of something I know but didn't think to employ at bedtime (because they're just supposed to go to sleep, dang it!!!): positive reinforcement.

Well, for three nights now I have upped the ante on my bedtime parenting, and already it is working. Every time Eleanor got back into her bed, I showered her with accolades. Whenever Azalea started to fuss, I assured her that her room was safe, that I would keep it safe, that I would be nearby, and that she could ask for me if she REALLY needed something. I told them both that they were being good girls.

Success! Tonight Eleanor only got out of her bed twice, and in the first three minutes after I left the room. Azalea only had one small issue with the coordinates of the sheet and no tears at all.

Now who's manipulative and tricky, huh? Thanks for your suggestions, Ms. Leach.

*********************************************************

ACT III

In my last post I had much to say about being comfortable with my new body. It was as much to empower myself as to empower other women. That's not to say I don't believe those things, but it helps to say it to believe it.

Yesterday I got two really great compliments on my glasses, of all things. One day, two compliments from complete strangers.

It struck me as funny that I spend so much time thinking about how different I look, both from how I think of myself and from other women, but it turns out that other people don't even notice or care. They just really like my glasses, and perhaps the way they compliment my face.

The compliments suggested to me that perhaps I'm looking good these days. This was good to hear because I still see myself as looking better than that time I had cancer. I stubbornly associate "looking good" with how I looked before cancer. Perhaps it's time for me to adjust my self-image and take the suggestion.

Evolution of a scar

2011-09-08T22:57:00.002-05:00

I've been doing some reading lately about breast reconstruction. Not about the gross science-y stuff about reconstruction, but the social and psychological stuff. I'm not at all considering reconstruction, but now that I'm not in the thick of cancer treatment I've found myself curious about why women get reconstruction. Yea yea, isn't it obvious that the appearance of two breasts is better than one or no breasts? This is probably what I would have thought, if I had thought about it Before. But now that I've journeyed through the cancer treatment gauntlet, I'm not so sure.

First of all, surgeries are both painful and a pain in the a$$. Everything hurts, and continues to hurt long after the hurt is supposed to be gone. Electing for surgeries that are not a necessary part of cancer treatment is currently beyond my capacity.

Secondly, if I was uncomfortable with artificial body parts before, why should I suddenly be more comfortable now? Especially with a relatively expendable body part?

We all know, or at least have learned by now, that I am a practical person. The above viewpoints should therefore come as no surprise. However, I am in full support of other women choosing reconstruction. I am therefore trying to learn why they make this choice. My purpose is not to see if I'm right or wrong, but to learn about these other viewpoints.

In my small, non-scientific survey, I have found that the perception of others is the primary reason that women choose to reconstruct. I have determined this by reading dozens of anecdotes in numerous books. Most women want to look good (normal?) in clothes, and they want to be sexually attractive. What I find interesting about this is that it seems to me that retaining attractiveness is at their own expense, both in terms of potential medical problems with the reconstruction and the fact that the reconstructed breast often has no feeling. Did you know that latter fact, about the loss of feeling? It seems obvious, but never thought about it before and I didn't know that. It seems to me that if I had no feeling in my reconstructed breast that would be a constant reminder that it was for someone else and not me. Call me selfish, but I would hate that.

The other way of thinking about "wanting to look good in clothes" is a positive self-image. Many women state that they just don't feel like women without the appearance of two breasts. This underscores the importance of continued improvements in reconstruction technology and health care support. Also, mastectomy is not the only condition that might lead someone to opt for breast work. Reconstruction is a good choice for women who may psychologically struggle otherwise.

I'm sure there are others, but I've only read about one woman thus far with an attitude similar to mine. She thinks of herself as an Amazon, a strong and active woman who can now execute her life with improved physical prowess in the absence of a breast. I don't yet see myself as an Amazon, but I can relate to the improved functionality of my new physique.

Also, I'm learning to see the beauty in my asymmetry. I hold my head high and walk around with confidence. My spouse constantly affirms my beauty. I have bought a few new shirts that are asymmetric and complimentary. I can now see asymmetry everywhere in the world, and it has unusual beauty. I truly do not feel that I need a reconstructed breast.

My scar itself is also remarkable. It keeps changing. Will it ever stop? It started pink, then turned to white (perhaps because of radiation?), then pink with white in the middle, then red with white in the middle, and now a deep red. It's slightly raised in some places, yet exceedingly smooth in others. It itches sometimes. The evolution of my scar is symbolic of the psychological journey about breasts, sexuality, and beauty that I am on. Always interesting and never done changing.

Family pile

2011-09-05T15:38:00.000-05:00

Do you know what I just did? I took a mid-afternoon bath. I know that some of my readers, both male and female, are bath people. Indeed, I could name a few who I'm certain have experienced the midday tubbie. I myself, however, am not a bath person, let alone at a time other than night. But armed with my newly cleaned tub, I took the plunge and it was glorious. I am fighting a cold (please oh please don't turn in to a sinus infection, pretty pretty please) and I was dirty. I find myself wanting for more excuses, but that's all I've got. And that's okay.

I have discovered the best part of my family members attending college, pre-school, and daycare: more and better family time. When one parent's job was to stay home with the kids, the other parent was often rescuing the other parent from the job. Now the only rescuing we do is of the kids from their respective daytime activities. This leads to greater enjoyment of our time together. It's wonderful.

With this improved quality of family time we have had a most fabulous holiday weekend. My only regret is that I have not taken enough pictures, although I am glad that I have experienced it with my own eyes rather than through a camera lens. We grilled out with neighbors, we visited S. and her 4-week-old baby C., our dear friends Darci, Zach, & Sons came up for an overnight visit, and we went to the Gardens here in town. So many great photo ops, most of which I missed! But I did finish Eleanor's hat, and she modeled it for me.

We have a great abundance of tomatoes from our garden, and we are not (yet) canning people. So we have been making all sorts of delicious tomato things to make sure we eat them before they spoil. I have made vats of bruschetta topping and pico de gallo, and Ian has made four loaves of tomato bread (I can't link to a recipe because he just makes it up every time!). While he was making the bread, the girls played with flour and made their own creations. This is such a small fraction of the wonderful family time we had this weekend, but hopefully it conveys the message.

Bike date with Nori

2011-09-01T22:34:00.000-05:00

Spending time with one of your children without other children is a rare and wonderful occurrence. It never occurs naturally, so sometimes we just have to schedule it. My most recent one-on-one time was a bike date with my youngest daughter, Eleanor. I biked with Nori in tow to a nearby playground. This playground is novel for her because it's not in walking distance and so we rarely go there. I suppose it's a "destination" playground.

At first Eleanor asked for her sister, and I thought she might be nervous about ditching Azalea. But as soon as she realized she was getting special Mommy time, she played intensely without any further mention of her sister.

Eleanor is a lovely, happy, easy-going child, but she has a great stink eye. It's a scowl so deep that her eyebrows sink to her lips and you fear some great judgment is upon you. I'm not sure what the stink eye is about in the picture below. Perhaps it was a premonition that I was going to let her fall out of the swing. (Only her pride was injured.)

Thankfully, the stink eye didn't last, and we buckled up to find some more fun around town. Cheese!

We biked down to the river valley. We decided to pause our bike ride one more time and throw some rocks in the river. Nori loves to throw rocks into bodies of water and watch the circles grow and grow.

I helped her choose the rocks.

Elbow grease

2011-08-26T21:57:00.001-05:00

You know what cancer took away? That extra bit of energy and motivation that defines a midwesterner. You know who has officially reclaimed her energy and motivation? Me, right here.

This was one heck of a trying week on the home front. The adjustment to preschool/daycare is progressing, but not without wounding us. Thursday was by far the roughest; I think both kids expected this whole preschool/daycare thing to be temporary, and plus they were exhausted from the stimulation and stress of the previous three days. All of the stress and exhaustion translated to extreme crabbiness and sleeplessness at home. I needed extra patience, extra empathy, and still more patience. But there is a light at the end of the tunnel. Ian is having a ball at the U, which helps the rest of us keep our transitional suffering in perspective. And the kids are adjusting already. When I picked Azalea up today she said, "Mom, at first I didn't like preschool very much, but now I LOVE it!" Eleanor's light is not as bright yet, but she too is turning the corner. The first few times I picked her up from daycare, she was quaking with fear and half sobbed the chant, "Go home now, go home now!" This was very hard for me to bear. But today she was consolable, and I witnessed her having fun before she saw me in the doorway. Already the wounds of being torn from daddy's care are healing. The best part is that I don't foresee any scars, but it was a tiring week nonetheless.

Despite the changes on the home front, I totally rocked it on the science front. I finished a manuscript last Friday and had numerous discussions about it this week. All week I chugged along on an analysis project that I've been de-prioritizing (isn't that just a fancier and more justifiable word than "procrastinate"?) all summer, and it's almost done. Also, I had this great idea for a review article and I've already acquired collaborators and outlined the manuscript. And finally, I'm working with a talented bench scientist to keep the research side of things moving forward.

In my view, my biggest accomplishments for the week are the things that I was physically unable to do during cancer treatment. I cleaned the bathroom, INCLUDING THE TUB. Yea. Not gonna lie, our tub only gets cleaned semi-annually, but I justify this because it doesn't suffer daily use. You can judge me, whatever, but the point is that I cleaned the tub this week (so now is the time to visit). Also, I began a deck-refurbishing project that I had promised in June. For my mother-in-law's (Lori's) birthday I had said that I'd refinish her deck. She has been so wonderful, helpful, and supportive throughout our relationship, but particularly during the whole cancer business. I therefore decided to do something special for her birthday, which I thought could be cleaning and sealing the deck that she hates. You may ask, if she hates it why would I refurbish it? Well, it would be a huge project to replace the deck with something else, and it's actually a very nice deck if you can look past the moss and mildew. So tonight I purchased supplies at Ace (the helpful place indeed!) and scrubbed in the dwindling daylight. The results were instant, dramatic, and gratifying. I broke a sweat, drank a beer, sprayed some water, had a ball.

Lori has a mantra about "chop wood, carry water" that means something about the fulfillment and joy that comes from everyday Work. I really felt that this week. There is joy to be had in seemingly mundane tasks, and experiencing a health crisis brings this brand of joy to the forefront.

We survived!

2011-08-22T21:32:00.000-05:00

Oooo it was hard dropping off those ladies at preschool and daycare this morning! But I can conclusively say that everything is going to be okay, as evidenced by the following. When asked how her first day at preschool went, Azalea enthusiastically replied, "Awesome awesome!" And although Eleanor had a "sad" day, she took an excellent nap and serenaded our dinner with a new song. My logic for taking comfort is that if she was too upset then she wouldn't have been able to sleep at all, and she wouldn't have enjoyed the song enough to remember it. And Ian discovered the most convenient bus to campus and made it to all of his classes on time. Plus, one of his professors cursed three times during the lecture!

It's going to be a great semester.

Lessons from the oncology waiting room

2011-08-21T14:31:00.002-05:00

Today is the memorial service for Dr. Phil O'Berry. He is so famous in our town that his memorial is being held at the student union on campus. He used to be the director of the research institute at which I'm employed, but I didn't know him then. I met him in the oncology waiting room, both of us near the end of our respective chemotherapies.

At first I was jealous of Dr. O'Berry, because when the nurses called him back they would literally call, "Doctor O'Berry?". I would think to myself, "Hey, I'm a doctor, too!" It's not that I actually wanted to be called "doctor", but I was trying to be sensitive to a potential gender issue. I've settled on it simply being an age and respect issue because after visiting with him, I too had trouble just calling him, "Phil". He definitely lived his life larger than just Phil. He commanded respect. He was Dr. O'Berry.

One of the last times I saw Dr. O'Berry in the waiting room was my last chemotherapy before my mastectomy. I was telling him how nervous I was, and probably how tired I was of the whole cancer treatment business. And that's when he told me to never stop brushing my teeth. He told me that he had been fighting colon cancer for seven years and was supposed to have died five years ago. He told me that it got really bad when he quit brushing his teeth. I took it as a metaphor for "never give up". I think he meant that there's no sense in sitting around, waiting to die, and as long as you're living you have to brush your teeth. So brush your teeth and live another day. Most of these are my words, but if I had to attribute a direct quote to him it would be, "Never stop brushing your teeth."

When I mentioned to my co-workers that I'd met Phil O'Berry, a fountain of O'Berry greatness spilled forth. I couldn't believe that I had met this somewhat famous person and had been totally ignorant during our interactions. Apparently he was an amazing scientist, the best director the center has ever had, and a wonderful father to both biological and adopted children. I wanted to tell him how highly everyone thought of him, but I was at the end of my weekly chemo treatments and didn't know if I'd run into him again. Also, in our previous conversation he told me he'd be going into hospice care soon. So I wrote him a note and left it at reception for the next time he came in for a treatment. I told him how great he was and how much I appreciated his conversations. He wrote me back one time, and that was the last I heard from him.

Today was his memorial service, and I decided to skip it. I know, I'm a heathen. I should be there showing my support for his family. But instead I am enjoying the glorious weather with my fantastic family, heading to an amusement park to end our summer with a "bang". I'm telling myself that Dr. O'Berry would understand, but I still feel a pang of guilt about it.

(We're riding the hot air balloons. Uncle Andrew is the filmmaker, with Aunts Hilary and Holly and Cousin Kael in the adjacent balloon.)

Rest in peace, Dr. Phil O'Berry. I'll never stop brushing my teeth.

I won't belabor Ann Arbor

2011-08-18T22:17:00.000-05:00

I had the most wonderful time on my trip to Ann Arbor. I am so glad that I went. It has been said by many that the lengthy drive would have deterred them, but not me. I love a good road trip, especially with a friend. My dear friend and former neighbor Darci accompanied me on the trip, to help with the drive and be my date to the wedding festivities. (I totally mis-typed "date" as "data" several times before getting it right. Nerd salute!)

I had checked out four books on tape from the local library and brought an entire case of CDs, but none of these were necessary on the way to Ann Arbor. Darci and I talked the WHOLE nine hours. I suppose it's a testament to our friendship, but I can't discount the fact that the conversation may have been a direct result of our mom freedom. There were no kids to keep in line or take care of, and we could talk about whatever we wanted. It took about three hours before we realized we could curse. "Geez" be darned.

It was so great to see Maggie (the bride). She and I met in graduate school, and we became particularly close after I had Azalea. I know, that's not the typical way it goes with friends and babies, but Maggie is special. She would adjust her schedule to do various morning activities with Azalea and me, such as meeting at Lazy Jane's for the best scones in the universe. It was the power of our bond that drew me on this road trip.

Upon arrival, I quickly learned that Maggie's hairdresser had canceled the wedding hair-do session, and no replacement could be found. I am actually only semi-proficient at doing hair; I can twist and braid, but I'm lost with any electric hair tools. However, I didn't want Maggie to be more nervous than she already was, so I confidently said that I could do her hair, no problem. Fortunately she has a friend and a cousin who are excellent with hot hair tools, so they blow-dried and straightened out the business for me. Then I set to work with the twisting and the pinning. When it was all said and done, it looked pretty darn nice (but it's a good thing she wasn't sitting in front of a mirror throughout the process because there were some hairy [pun intended] intermediate stages). As per her vision, it was twisted across the back, ending in a left-ear-proximal triple-twisted bun with some curls coming out of the middle. It was finished with three modest white flowers at the bun-ear junction. And the best part is that it didn't fall out while she danced! Ultimately, stability was my top design concept.

Before I did Maggie's hair, I offered a different service to Maggie's mom. She was standing in the hallway looking like a ball of nerves. I asked her how she was doing. She shrugged. I said, "Would you like me to rub your shoulders for a minute, to help you relax?" She looked off into the distance and after a pause said, "Let me find a place to lie down." Ha! I followed her to the guest bedroom, where she laid down on the bed and pointed to her lower back, saying that it was quite sore. I started to rub her lower back, but apparently not low enough. She shoved my hands to her tailbone. I rubbed and rubbed, and then she was ready for the shoulder rub. I didn't mind at all, and indeed I had offered. But it struck me as hilarious to be taken up to such an extent.

The best part of the wedding was the people. There were 40 people at the rehearsal dinner, who were the same 40 people at the wedding, who were the same 40 people dancing at the reception. I was so impressed by this, because often it seems you have to invite more than 100 people to get a full dance floor at the reception. I thought this really spoke to how well Maggie and Sam knew their friends and family, and to the high quality of people in their lives. There were many people whom I'd never met, but I felt like I'd known them forever. Instant connections, instant fun.

I'll end with a photo of my road trip accomplishment. You didn't think I just sat there whenever it was Darci's turn to drive, did you? I started making the girls' winter hats for the season, and I finished Azalea's. I've made an awful lot of hats in my day, but this one might be my finest achievement. Fancy!

Big changes

2011-08-11T21:48:00.001-05:00

It's been an exciting week here at our house. Azalea and Eleanor started practicing at their new preschool/daycare! They will begin attending full-time on August 22nd, which is the day that Ian starts going back to school full-time. Our house is full of excitement right now. Big changes coming our way. It is very, very fun.

Eleanor will be a butterfly. She is one of the most verbal of her classmates, and possibly one of the older kids. She will not be long with the butterflies before becoming a ladybug. In the meantime, the butterfly teachers are fantastic, and Eleanor has already found some favorite activities. Today was her third practice, and she stayed with the butterflies all by herself for a whole hour. She didn't even cry! I think she'll do well with the increased socialization once she adjusts to the new faces and things.

Azalea will be a dragonfly. Today was her first practice with the dragonflies, so Ian stayed with her. He was VERY impressed by the education-quality of the dragonfly care. As a mechanism to dismiss the kids to the next activity, the teacher asked them to name what letter certain words started with. When an "A" word came up, she piped up, "And MY name starts with the letter A!" It was a proud moment for both father and daughter. Tomorrow she will have a practice all by herself. She is SO ready for this change.

Ian and I think the hardest part about the daycare transition will be the sister relationship. Azalea and Eleanor are best friends, but now they will be in separate classrooms. I think this will be good for the big girl, but the little girl might suffer at first. It will be good that the learning is tailored to their respective ages; I just hope we've laid the foundation for the outstanding sister relationship so that it continues. Forever.

I must say that the most adorable part about all of these changes is Ian. He is so, so excited, and that makes me excited. And I am so proud of him: he found a new GI bill for which he qualifies, and it is paying 80% of his tuition plus a monthly living-expense stipend! Wow. What a rockstar.

Me? Thankfully I don't think I have any changes, except supporting my family members through theirs. I am biking to work almost every day (no more lung tightness--that's a pleasant change), and my hair is so long that I really ought to get a haircut (another pleasant change). I am being productive at work and home, from manuscripts being reviewed at scientific journals (change) to having the toy room all organized and tidy (change). My range-of-motion is even good enough that I can reach the top shelf (change). I feel so good that I'm taking a road trip this weekend to Ann Arbor for a wedding (change).

I still have herceptin treatment every third Wednesday, but it's not so bad. I bring a project, and I have lots of friends at the clinic. It's almost a social engagement. Almost. My last treatment will be the first Wednesday of November. Let the count down begin. And then we'll start a countdown until port removal, which will be at my discretion but probably not until at least October 2012 (40% chance of recurrence of inflammatory breast cancer in the first 1-2 years, therefore why rush the port removal?). Ah, port removal. The best change of all.

Poke tally:

port 36

right arm 12

tummy 6

left arm 6

right breast 2++

left breast 1+

superior vena cava 1

T9 vertebral body 1

Ooooo, that tickles

2011-08-05T22:35:00.000-05:00

For the second day in a row I biked to work, which is certainly a small victory for me on my recovery road. I live less than three miles from work and the ride is marvelous. Over half of it is on a dedicated path. It was refreshing today when the weather, as opposed to a new ailment, threw me for a loop. The hottest July since 1955 finally broke when it became August, and with the break in the heat came afternoon rains. Don't get me wrong, I love afternoon rains, but they bring a dilemma to a cyclist: to wait it out or tough it out? It is with great delight I report that today I toughed it out.

Splashing in puddles is good for the soul no matter the age. Azalea and Eleanor love to don their kitty and cherry galoshes, respectively, and hunt for the best puddles in the neighborhood. Their affection for splashing is boundless. Why do I not have a pair of galoshes? I do not know the answer to this. Perhaps there is a social convention against adults marching in puddles, so what better way to splash than at heedless speeds on two wheels?

Do you know what rain feels like when it hits your shins? It tickles; a faint and pleasant sort of tickle. Biking in the rain is arguably the only time one could ever experience the tickle of rain splashing on shins. This is not an experience to be missed.

A trademark of biking in the rain is the kick-back of water and grime from the street up and around the rear tire onto your lower back. I of course have never had a fender, and this particular property of biking in the rain used to drive me crazy in college when I had people to Impress. I no longer have people to Impress; indeed, today my grime stripe was a badge of honor. It tickled, it gritted, it clung, and it only existed when this living, breathing human is pedaled her bike through the rain.

I was so incredibly delighted by biking in the rain that I actually laughed out loud while speeding down the biggest hill on my route. Laughter begets laughter, and this held true even within myself. I laughed at myself laughing. I laughed at myself for laughing at myself. Then I passed a stalled car and laughed at how crazy I must have looked to the driver. I decided my anti-rain-in-the-eyes squint also would appear like laughter, and that made me laugh even further. Fortunately I was nearly home so I could pass on the laughter contagion before it snuffed out.

Today was a bona-fide rain storm, not a sprinkle, so you can imagine that I was soaked through when my journey ended. It was a warm enough August day that I was not cold. I nonetheless changed my clothes when I got home, otherwise I would not have dried for hours.

Carpe diem.

Myself

2011-08-01T21:46:00.001-05:00

As I danced through the best weekend ever, I didn't think about how lucky I was not to have cancer. I didn't think about how un-tired or un-sore I felt. I didn't think about how I should be appreciating and savoring every moment. I was my normal (which is arguably abnormal), active self. I simply rocked my weekend. I'll spotlight a daily highlight below.

Ian had organized a man's camping weekend and Lori took the girls, so Friday night I had the house All To Myself. This was, in a word, fantastic. Some people might have watched movies til 3 a.m. or invited friends over, but not this girl. I rearranged my house. Well, not the whole house, but those quadrants occupied by 2- and 3-year-old squatters. In preparation for my Big Night In, Ian took down Eleanor's crib. As you'll recall she turned 2 two weeks ago, and she actually hasn't slept in the crib for 6 months or so. So I converted the crib room to an upstairs toy room. The downstairs toy room was minimized and optimized. A donation pile was created. A good time was had by all. Epilogue: the girls love their upstairs toy room, and the parents love the banishment of small or overly vocal toys to the upstairs.

The girls and I went to visit Aunt Jacque for the weekend. Anna watched the girls for a few hours while Aunt Jacque and I went to a day spa. Oh my goodness, we all had such a great time. The girls were delighted by Anna in the life-sized doll house in their backyard. Meanwhile, Aunt Jacque and I had full-body massages, exfoliation, and sea weed wraps. We went to the beauty school in town and thus got an excellent package deal. I had never experienced either of the latter two services, and both were...interesting. The problem with the exfoliation was that it was awfully close to painful. In contrast, the sea weed wrap was divinely soothing and moisturizing. The problem with the sea weed wrap didn't manifest until about 20 minutes after we had left the salon. We picked up 11-year-old Brielle and she immediately pinched her nose at us. Closer olfactory investigation revealed that our skin emanated a stink like a dog that had swam in the ocean yesterday and wasn't quite dry yet. Oh man, it was a hard-core stink. But it was all part of the experience. I'd definitely do it again, I'd just bring some perfume along next time. The best part of all was having a date with Aunt Jacque. Everyone needs an Aunt Jacque.

On the way home, we stopped by to visit the triplets and company. I know, they live in Columbia, but they were in the area visiting family this weekend. It's only been a month since I've seen them, but they all have new tricks. Lucy is walking, Eva is talking, and Alex is tipping over things three times his height. The best part is that I think they remember us Allens. Well, at least a little bit. The girls and I got tons of smiles and even a few cuddles. Ooo I just love the triplets!

I put an exclamation point on the weekend when at nine o'clock on Sunday night I baked a beet cake. That's right you heard me. Indeed, 1) it was awfully late for baking, 2) it was awfully hot for baking, and 3) I baked beets into a cake. The cake is topped with cream cheese frosting; the fact of this cake really speaks to the power of cream cheese frosting.

Welcome back, hbomb.

The Newly Born Woman

2011-07-28T21:00:00.016-05:00

She refuses life nothing. Her tongue doesn't hold back but holds forth, doesn't keep in but keeps on enabling. Where the wonder of being several and turmoil is expressed, she does not protect herself against these unknown feminines; she surprises herself at seeing, being, pleasuring in her gift of changeability. I am spacious singing Flesh: onto which is grafted no one knows which I--which masculine or feminine, more or less human but above all living, because changing I.

Helene Cixous

My ROOMMATE was the film student, not me

2011-07-24T21:32:00.002-05:00

Eleanor Rose turned two last Wednesday. I'm commemorating it here with some digital goodness that we captured over the weekend. More photos of our fun can be seen here, although I still need to snag the pics from Lori that she took at Nori's wading pool party. Let's start with a movie. I think I tried too hard to channel Sofia Coppola, but hopefully you won't get too dizzy. Below you can watch Nori blow out her candle all by herself. You're welcome (for sparing you from listening to us sing).

I had chemo (herceptin) on her birthday, so Ian brought the girls and some lunch to my appointment. One of my favorite nurses made the girls balloons out of nitrile gloves. A glove balloon is shown below, with the card from Azalea and a page of the raddest book in the universe.

This weekend we had too much fun, and I don't have enough energy to recount it. Hopefully you'll forgive me if I jack up the cuteness quotient. The two pictures below really do say 1,000 words. Try to hear all of them.

And finally, a movie of us enjoying a break from the midwestern heat wave with one of Eleanor's new toys. Only Ian could make bubbles a little gross.

I got my sunset

2011-07-18T20:51:00.001-05:00

Lori took the girls

I had a date at the lake

With Ian on Sat.

The day was pretty

The heat was ridiculous

On the pontoon boat

Snack and supper was

Vegetarian bean dip

Before it went "splat"

After the boat ride

We beheld the sunset from

Our camp on the lake

As the sun faded

The moisture made the sky pink

Orange and purple

I took a deep breath

Another and another

Sans interruptions

It has been too long

I smiled and felt peaceful when

I got my sunset

I'm not crying

2011-07-14T22:46:00.000-05:00

What is with me lately? It might be my ovaries awakening from my 55-year-old chemo body into my renewed 30-year-old body, but I'm a tad bit sensitive. However, my sensitivity doesn't feel hormonal, so I'm trying to pinpoint another cause. The stress of a "normal" life while still having skin pain, arm pain, boyish short hair, etc. is certainly a culprit. And I think it's highly likely that I have not yet processed this whole cancer thing yet.

For example, the other night I was writing some notes in my Wonder Woman notebook and I had to flip back to reference a previous page. I was intrigued by what I found on that previous page, and I just kept flipping back and back and back until the beginning on the notebook, which started just after the cancer diagnosis. The page that got me and jerked out some tears was dated Oct. 27, 2010. It is almost entirely in my brother's handwriting--the cause of my undoing. He detailed some of my goings-on:

10:30 pm lethargic, nervous, drowsy. Going to try to sleep. Tummy hurts.
9:30 am 1 prochlor, 1 vitamin, 2 tylenol, 1 vitamin D
12:47 pm 1 ondansetron, 2 tylenol
6:30 pm 1 ondansetron, 2 tylenol
etc.

On the next page are some questions for Dr. Oncologist, in my own handwriting. One question is, "On major fatigue days, I nap twice and can't do much of anything. Is that okay?" Doesn't that just make you want to reach into the past and give me a cuddle? It kind of breaks my heart. I had to stop reading. I kind of can't believe I experienced that. And the rest of it, too.

The other example of my sensitivity-slash-need to process the whole cancer thing happened at work. Before my diagnosis, my boss had planned to host a seminar series in June 2011. So in January, between chemotherapies, I invited Heidi Goodrich-Blair. She is an outstanding scientist in the field of microbial interactions and symbioses. In June she visited, and I was her host. I packed her schedule with all sorts of exciting meetings with excellent scientists, both at our center and at the university in town. When the visit was over we embraced, said our thank yous and goodbyes, and I felt like crying. It was supposed to be this professional, non-emotional work thing, and I felt like crying. Why? Because although I had gotten to visit with her, I didn't really get to sit down and talk with her about science? Because I realized that she represented all of the wonderful people and things and places that were Grad School, and I missed all of them? Because I realized that cancer had changed me, both professionally and personally, from the person she once knew, and that disappointed me?

The trick to these emotional things, I think, is that I am getting so deeply engaged with my normal life that I am not taking the time to Release these emotional things. I eagerly bounce from work to kids to friends to family to chores with scarcely a moment for myself. And I'm not mad at myself, because I think this is a natural response to not doing jack___ for 7-ish months. The current lifestyle, however, urges me to deny the tears.

"For your information there's an inflammation in my tear gland." (If this is your first introduction to the Flight of the Conchords I highly, highly recommend that you check 'em out. Hilarious.)

But seriously, now I think it's time to work some Heather time into the schedule. To just go sit and watch a sunset somewhere, savoring every dip of that orange globe towards the endless midwestern horizon.

Where should I go, now that my dad no longer lives in the best sunset-viewing house in the universe? I'm taking suggestions.

Beautiful survivors

2011-07-11T22:49:00.000-05:00

Maybe you've already heard, but former first lady Betty Ford passed away last Friday. She overcame some remarkable difficulties in her lifetime, including breast cancer and drug addiction. She founded a center to help people overcome their addictions. This of course is an excellent contribution to society, but I am naturally drawn to her courage in the face of breast cancer. She was a model for how high to hold your head during and after breast cancer treatment.

Another beautiful survivor I recently encountered is Matuschka. She became famous in 1993 when her self-portrait appeared on the cover of the New York Times magazine.

Isn't she amazing? Apparently this was a highly controversial photograph, and I am interested in reading more about the controversy because I don't see any place for controversy. I see nothing but beauty. Clearly I am biased. I'm guessing that the "damaged" part of her body is just more than most people want to see. I'd be interested in hearing what you think.

I was pleasantly surprised by her choice of wearing white. If it were me, and it might be someday because it would be fun to replicate this photoshoot, my instinct would have been to wear red. Red isn't even my color, but it would be dramatic and angry and representative of how I felt for a long time. In contrast, I love that the white dress represents purity despite the damage. The slim, angular dress adds an element of sexiness, and the flowing scarf invokes femininity. Yep, red would have been totally wrong for this image. I guess that's why I'm not an artist.

The whole article published with the above image is an interesting presentation of the status of breast cancer awareness up to 1994. One of main things I took away from it is how very personal breast cancer is: all of the main supporters of awareness and research have been touched by breast cancer. Tom Harkin, still a senator of this great state, was the champion of a huge increase in funding for breast cancer research in the 90's. It seems that he was driven by the loss of two sisters to the disease. This blog and I are certainly an example of breast cancer awareness driven by personal experience. I suppose this is not surprising, because people care about what they know about. I think I just never thought about it before.

Cheers to you survivors and supporters out there! You are all beautiful!

Columbia is lovelia

2011-07-06T22:18:00.001-05:00

Has anyone ever told you how therapeutic it is to just to get out of town? Or even out of state? Add to that the joy that comes from spending uninterrupted days with one's precious daughters. Plus the delight of visiting old friends and getting to know their babies. It was just what the doctor ordered, even if it wasn't quite enough time away. There will be other long weekends.

Matt and Martha are the best hosts ever, and even the triplets were gracious enough to share a bathroom with us. M&M cooked and cleaned, cleaned and cooked, and even stayed up late to watch a movie with me one night. Fortunately our families are pretty much on the same schedule, so the visit was very smooth despite all of the childcare being performed. Activities included going to the library storytime, playing in the kiddie pool on the patio, walking around downtown and a bit on campus, and walking around the neighborhood. On Sunday we took nearly the whole day off from cooking by eating lunch downtown and ordering Shakespeare's pizza for dinner (Pat, it is indeed delicious, although I was more impressed by Sparky's ice cream. Two words: peach cobbler). In short, I was pleasantly surprised by Columbia, MO. Some photos are posted below, but click here to view more photos from our trip. Oh, and on the way home I bought ~4 dozen Missouri peaches from a roadside stand. I am literally speechless just remembering the juice dribbling down my chin as the rosy flesh burst between my jaws. That's right, those peaches are already gone. They were well-loved.

My sinuses are feeling great, although I didn't realize it until my in-laws asked me about it the other day. Yet another example of me taking my renewed normal life for granted. Anyway, I was never very congested even with my sinus infections, but I do think that the nasal steroids are improving the situation. I do seem to be getting more air up in there, and Dr. Ear Nose and Throat said that air is key to improving the sinus situation. I therefore think I am in the midst of a modest sinus victory.

Cancer treatment didn't kill me

2011-06-29T21:36:00.001-05:00

This will be brief because I am so, so tired. No better way to keep myself brief than a numbered list.

1. Sinuses. Dr. Oncologist was on the same fence that I was on in yesterday's post about my inconclusive symptoms, so she sent me to Dr. Ear Nose and Throat. His opinion was that my sinuses are not acute enough for surgery and we haven't tried everything in his non-surgical arsenal. The antibiotics will be ceased and I am to shoot some steroids (Nasonex) up my nose every day, in addition to maintaining the sinus washes. The goal of the 'roids is to open things up and let the sinuses drain on their own. I predict another sinus UFO in my future. I am very happy about this outcome. I did not want surgery.

2. Heart. I had an echo (ultrasound) of my heart today, and I suppose you could call it routine. Dr. Oncologist wanted to check on my heart after chemotherapy, but she had to wait for all of my surgical and radiological wounds to heal. My heart is in excellent condition. This is outstanding news. This in addition to all of the other ways I'm healing causes me to tentatively conclude that cancer treatment did not kill me. This may not be news to you, but I am glad to finally have enough evidence to believe it for myself.

3. Lung (left). What I don't think I have told you yet is that I am experiencing some shortness of breath in my left lung. I biked to work last Friday and got a little unnerved when I couldn't catch my breath upon arrival. Also, I run out of air even when I talk too much (as I did on Monday when training a new person in the lab). Dr. Radiological Oncologist warned me that this decreased lung capacity may occur between 1 and 4 months after radiation. This is because a sliver of my lung was in the radiation field and could not be avoided. He said that this lung tightness usually resolves itself with time (although I am unclear if this is because the rest of my lung compensates or if the wounded lung heals). Regardless, in light of my ongoing sinus woes Dr. Oncologist wanted a chest x-ray to rule out a lung infection. I do not have these results yet. Again, the left lung tightness is to be expected, and there is probably nothing more wrong with me. Maybe I should sharpen my former tuba-playing skillz and exercise the lung with some John Philip Sousa.

(Stars and Stripes Forever, performed by NY philharmonic. Happy Independence Day, everyone!)

4. In summary, it was a very busy day. I was at the clinic for 6 hours and went from Echo to blood draw to Dr. O to chemotherapy to Dr. ENT to chest x-ray. Whew. No wonder I'm exhausted.

5. Now I am looking ahead to my first vacation since cancer started! Woo-hoo! This weekend I am driving the girls to scenic Columbia, MO, to visit my dear friend Martha and her triplets. Should be epic in terms of cuteness and messiness. Ian will not be joining us because I surprised him with a plane ticket to Seattle to visit my larger-than-life brother. Tee-hee! He deserves a vacation even more than I do. Safe travels and safe celebrating to all of you!

40 hours

2011-06-28T23:20:00.000-05:00

I did it. I worked my first 40-(plus!) hour week last week (see the above screenshot of my timesheet...yes, I have to fill out a timesheet <sigh>). I didn't have any appointments or therapies, and no new problems arose that compelled me to call one of my many doctors. And so I did it. My greatest accomplishment? Getting a draft, albeit extremely rough, of a manuscript to my boss and co-authors at 4:30 on Friday. This manuscript needs to get done before I can do two others that are in my queue, and some of my collaborators are following this blog. Therefore I'd appreciate it, cancer and associated ailments, if you'd get out of my way. Thankyouverymuch.

Indeed, apparently I've been working TOO much. The timekeeper person in DC called me and asked if I wanted to give back all of the sick leave hours that people donated to me and I haven't yet used. I said I still have chemo every third Wed. and am concerned that I won't have enough leave on my own to cover that through October, and also I might be needing sinus surgery soon. She said oh, you'll have to fill out another application for people to donate sick leave, because the other sick leave is for CANCER and not sinus surgery. I sputtered but, um, yea, I wouldn't have the sinus issues if I never had CANCER. It's all RELATED. She said she'd have to talk to her supervisor, and I'm to call her on Thursday, presumably after I know more about the possibility of sinus surgery. I was cursing my big mouth. It never crossed my mind that anyone would not relate said sinus surgery to cancer. I should have said that the sinus INFECTION was caused by cancer treatment. But I just jumped straight to surgery, because that is all that matters to ME.

This brings us to the topic of sinus surgery. Here's where I'm at: tonight I took the last antibiotic of a 3-week course, and this was nearly in tandem with the previous 3-week course of a different antibiotic. I've been shooting yet another antibiotic up my sinuses for over a week now, again for the second time. I was taking Claritin for weeks to dry things up, but I quit on Sunday because I hate it so much and things seem to have been dry for quite some time. Now on to the symptoms: I have always been able to breath through my nose and have never been congested in spite of four sinus infections since December. (Perhaps mine could be dubbed Rubber Sinuses? I smell [pun intended] a new superpower for the next X-men movie!) I have had some drainage, but I currently have no drainage, and only once did a glob of green goo drain out of one side with a sinus wash. I have had some sinus pressure, but I currently have no pressure (interestingly, the sinus pressure presented only WITH the Claritin and went away when I quit taking the Claritin). I have also had some dizziness and upper tooth pain, both of which can be associated with a sinus infection, and those are both resolved. I do, however, have dimmed hearing in my right ear, and my voice is "nasally". I am therefore somewhere between healthy sinuses and a sinus infection.

Any predictions? When I see Dr. Oncologist tomorrow for Herceptin chemotherapy, will she recommend sinus surgery or not? Will she first call for a CT scan? Your guess is as good as mine. Interestingly, I am no longer vehemently against sinus surgery if it improves the prognosis against future sinus infections. I am sooooo tired of being on so many drugs, specifically antibiotics. My microbiota needs a chance to recover (and it will recover to a stable and slightly different community, according to Les Dethlefsen and David Relman's data on the effect of ciprofloxacin on the human gut microbiota).

I'll end with a random shout-out to my awesome sister, Holly. We love you and your Precious little dog, too!

Woman (with two kids and cancer) in Science

2011-06-23T22:08:00.002-05:00

The New York Times recently ran an article in which they interviewed four female scientists at the top of their fields. These women are role models for women everywhere, in every field, regardless of aspirations.

I was eager to listen to the full interview that is available with the article. I have always benefited from learning the milieu of ways that other women have progressed in science. Taking time off to have kids, hiring some help at home, and choosing (not settling) to teach are just some of the ways that women strike a harmonious balance between Science and Life. And so it was with great disappointment that I heard three of the four women interviewed say that they would not recommend a scientific career to their daughters.

What?

They say it has been hard, perhaps too hard, and that they have become hardened. They have made too many sacrifices for too little pay-off. I really am in no position to judge, but it seems to me that so much unhappiness should amount to a career change.

Everyone has struggles. Right now my struggles happen to be fighting cancer and being a fantastic mom while trying to build my scientific career. It's hard, and I could do without the cancer, but I love it. Yea, it's a lot of work, but the best things in life often result from Work. No other field would allow me to be as creative, innovative, and challenged as I am in science. In no other field could I isolate DNA, take photographs, and read (scientific) stories all in one day. I am a microbial explorer, and it's awesome.

I don't profess to be at the top of my field, or even in the middle of it. Also, I recognize that I am fortunate in ways that are particularly essential to building a scientific career: supportive spouse, family, boss, mentors, and work environment. Perhaps these top-of-the-field women struggled with some of the individuals in their would-be support network, thus souring their perspective. Maybe getting to the top is harder than simply chugging along in the pile. I wouldn't know. Their experience is theirs, and I suppose that painting a falsely rosy picture never helped anyone. I guess I just would have preferred to hear a more positive perspective from the top, because I guarantee there are some happy-at-the-top women out there.

Azalea and Eleanor, you can be whatever you want to be when you grow up. I'll love and support you no matter what. But for the record, science rocks.

Fluffy

2011-06-20T22:20:00.000-05:00

Don't tell Dr. Oncologist, but this sinus infection is not going away. I am halfway through a three-week course of a new antibiotic. I have been diligent about washing my sinuses every night. And on Friday, I resumed taking generic Claritin D, to dry things out. But my sinuses are slowly building in pressure where they should be dissipating, and draining where they should be drying. Drat. Bilateral drat.

Oooo I hate taking Claritin D, generic or not. When combined with the antibiotic and antifungal drugs that I am also taking to combat said sinus infection, it makes my head fluffy. This is probably the result of the drug cocktail created in my system, because each discrete pill claims that it could cause drowsiness. Overall I wouldn't describe my primary side-effect as drowsy, but that is certainly playing a role. I would define a new side-effect called fluffiness. They should put that on the bottle: "may cause fluffiness of the mind". I can initiate thoughts, but I have trouble finishing them. My attention span is a fraction of what it should be. The worst part is that I'm sufficiently coherent to recognize this failure to close my own gaps in my own thoughts, and it is exceedingly frustrating. I am channeling patience from elsewhere, as mine is wearing thin.

After this is over I think I'll burn my pill box, with my bras. Except for my nice bras. Someone really should adopt them.

Speaking of fluffy things and adopting things, our neighbor offered us a kitten. A white kitten. It is probably very cute and fluffy. This is the closest we have come to getting a cat, but I think we're going to remain pet-free for awhile longer. Cats are a practical pet in terms of their independence, but the whole pooping-in-the-house thing doesn't do much for Ian or me. The plan is to hold out and get a dog in a few years. We shall see. I do enjoy a good cat cuddle once in awhile.

You know what else is fluffy? A certain pillow on a certain bed, just upstairs from where I am right now. I think I should go check it out.

I really ought to quit doing blog posts so late in my day. I'm sure the multifaceted drowsiness is affecting the quality.

Check that box

2011-06-14T21:41:00.000-05:00

This weekend I had to be reminded about celebrating my cancer victory. I know, can you believe it? The H-bomb was oblivious to possibly the best reason in her history for a mega-celebration. No, it is not because the 7 mm lung node is bothering me. It's not, and I'm pretty sure I hacked it up last Thursday anyway. I think celebrating my lack of cancer did not occur to me because I have eagerly moved on with my life.

With the cancer diagnosis came an intense need to beat it, and during chemotherapy that turned into the present tense of "beating it". I continued to work on beating cancer through surgery and radiation, right up through last week's PET scan results. And I will always work on beating my cancer. I am keenly aware of the possibility that my beaten cancer is temporary. It is relatively likely (I seem to recall reading that there's a 40% chance of recurrence for inflammatory breast cancer) to come back at some point, so this reservation will be in my mind during any cancer-free celebration. I shouldn't let an uncertain future inhibit my celebrations, though. I have enough mojo for daily celebrations, to be sure. Perhaps ignoring the potential for recurrence has catapulted me past the celebratory phase of beating cancer and straight into my attempts to return life to normal.

I've realized a better reason for why my celebratory sensations have been lacking: beating cancer is accomplishing a goal that I never should have had. I didn't aspire to get cancer so that I could beat it. In fact, I didn't aspire to get cancer at all. I tend to set positive, output-oriented goals, and my larger ones have included marriage, getting a PhD, and having (two beautiful) children. Beating cancer is to eliminate a negative thing, which in a way is a double-negative, and this type of goal is very unlike me.

I think that my aversion to negativity is the primary reason that I haven't been inclined to celebrate beating cancer, trumping even latent fears of recurrence. I think that all along I've expected myself to rush through and accomplish this goal, to beat cancer senseless, to get it out of the way of my numerous positive goals. Even on those cold winter days, filled with fear and fatigue, I longed to return my focus to my real goals. Beating cancer was just a distasteful, temporary goal, given to me by someone else. Now I feel that I've dumped it off of my desk and can get on with my real jobs.

Check that box.

Speaking of positive goals, I have a sewing project that desperately needs some attention, as I am hours away from my self-set deadline (tomorrow). I'll get to it after I finish this post and tidy the kitchen.

Did you say that I fought cancer recently? Huh, that's amazing, because I can hardly recall...are you sure it was me?

Predicted victories

2011-06-08T13:56:00.000-05:00

Perhaps all of the campers should evacuate Camp Allen, what with all of the wildfires springing from our camp. Wildfires of gossip, that is. Can't a girl take a nap before writing a blog post anymore? :)

Indeed it is as Holly commented: Dr. Oncologist is not concerned about the 7mm lung nodule, and her preferred course of action is to "watch it". She said it is too small to biopsy, too dim to think it's cancer, and therefore too insignificant to worry about it yet. Huzzah, huzzah! Also, she was positively beaming with the news that the T9 vertebral body in my spine is no longer glowing; it doesn't matter why, and we'll never know anyway. The morning took a slight downturn when she told me that if I have one more sinus infection she's going to send me to Dr. Ear Nose and Throat to drain my sinuses. This involves spelunking in my sinuses and poking holes to make more drainage routes. Ugh! That sounds positively awful, and I'm not convinced that that's necessary. Even if my sinuses were riddled with holes, couldn't an infection still set up shop up there? The problem is my po-dunk immune system, right? We shall see.

In the meantime, it's time for Operation: Sinus Storm. I am upping the antibiotic anti and switching to avelox (a fluoroquinolone) instead of augmentin. I am taking claritin to dry out the sinuses and flushing them every night with a saline solution to. After the eradication of the current sinus infection, I will adopt a daily prophylactic sinus wash regimen and wear a face mask the next time the kid(s) are sick. My goal is to prevent the need for sinus surgery. Oh, yea, and to reclaim my health at last. I will be victorious!

As alluded to, I already took one nap on this easy-chemo day. That herceptin, I tell you what, I can hardly keep my eyes open on the walk home from the clinic. I must have extra Her2 receptors on my brain because the herceptin seems to thicken and settle right in the center of my head. Fortunately it will be largely cleared up by tomorrow and gone by Friday for sure.

I have been receiving herceptin every third Wednesday since March, but not once have I made it between herceptin appointments without having some other appointment or ailment. I think June is my time to shine. I'm feeling it. I am going to work 40 hours next week, and I am not going to get sick before my next herceptin treatment. I will be victorious!

Fail

2011-06-06T16:06:00.000-05:00

The results of PET scans are definitely pass/fail. There's no middle ground for this sort of thing. No room for B-pluses or C minuses. You're either good (pass) or you've got something fishy going on that needs to be watched, biopsied, or removed (fail).

Dr. Oncologist was out of the office today, so substitute Dr. Oncologist called to give me what he thought were the time-sensitive PET scan results. Sub Dr. O called to tell me that I have a sinus infection. I said thanks, I'm already treating that. He said great and was about to hang up when I interjected, "How about my spine? I'm really nervous about my spine." He began to orally skim through the highlights of my PET scan results, starting with a normal-looking spine. Just as I was letting out the largest sigh of relief these former tuba-playing lungs could hold, he mentioned a 7 mm node on one of my lungs. "Tiny" and "bright" and "7 millimeters" are the only details I remember. He said that it could be an infection related to my epic sinus infection, and that it's small regardless of what it is. He said that my normal Dr. Oncologist will discuss it with me on Wednesday.

Logic tells me not to worry, because there is a very good chance that whatever it is is related to my sinus wars, or my recent surgeries, or my recent radiation therapy. My goal is to have that worry under control by tomorrow, and this post is, as always, therapeutic. This morning didn't I say something about Living, and happiness, and no need to worry? Time to go re-enact some Ring Around the Rosy.

Fail.

Living

2011-06-06T07:00:00.066-05:00

This was supposed to post automatically at 7am this morning...sorry for the delay.

I have a PET scan at 9am this morning. It is important because on my last PET scan three months ago, my T9 vertebral body (a bone in my spine) showed increased metabolic activity. I had a biopsy taken from this bone, and although no cancer was found, they did find "atypical" cells. This was good news because it wasn't cancer, but bad news because it wasn't nothing. The conclusion from this exercise was to repeat the scan in 3 months. That is today.

I suppose I am a bit worried about these results, but not as much as I could be. You see, I have been doing so very much Living lately that I don't expect the results to wreck my life. I think have learned how to live with the threat of continued cancer, or at least to ignore it. There's nothing I can do about it, anyway. And besides, Living is way more fun than worrying, especially when done on your husband's amazing patio...

And when playing with remarkable children...

And let's not forget the joy that is camping...

Sometimes the best part of Living is simply Ring Around the Rosy.

My other degree is in Cancer

2011-06-02T22:19:00.000-05:00

I'm really sorry I didn't post yesterday. I had to work late last night. Thank you, Hilary, for posting in the comments section the results of last Friday's skin biopsy: eczema. Yet another weird thing that has popped up in conjunction with my cancer treatment, but at least it's totally manageable. I've never had eczema before, and the dermatologist said it usually occurs in the winter or with a change in detergent, for example. I haven't changed anything and clearly it's not winter, so naturally I suspect something related to the April 4th needle-localized biopsy in that area. Perhaps the surgical glue? Who knows. I got a prescription for an ointment that should calm things down. It's a rare day that eczema is good news, but I'll take it.

When it rains, it pours, because I have another sinus infection. No joke. The kids had some piddly virus last week, and I of course caught it this past weekend. It started with a sore throat, so I did a salt-water gargle Monday night to nip it in the bud. And it was nipped! The sore throat was gone the next day. But things never 100% cleared up. Gradually over the course of the week I've felt my sinuses get a bit stuffy. That was no big deal, but when my teeth hurt upon bending over to lift someone out of the stroller tonight, my heart sank. Achy upper teeth is the hallmark of a sinus infection. Here's where I gave myself an honorary degree in Cancer: I prepared and performed a sinus wash; I took one free-sample antibiotic that Dr. Ear Nose and Throat gave me last month and told me to keep; I took a claritin D; and I took an anti-fungal (prophylactically). Boo-ya! I'll call Dr. Oncologist in the morning to get a full course of antibiotics, and hopefully she'll give me a bye on a head CT scan. I am indeed a professional patient.

Did I tell you that I asked Dr. Oncologist about why I get sick every time I even look at my kids (aka I complained)? I asked her how long it will take for my immune system to start performing as well as it used to. I feel so much better and my hair has gotten so thick that it just seems like my immune system should be doing well, too. Not so. Her response: TWO YEARS. Yep. And I'm only 3 months out from my last hard chemo. I'm going to have to start a sinus infection tally (I think I'm on number 4, if not 5).

The worst part about this sinus infection is that it's physically dragging me down. I can feel the fatigue quietly drifting in, like a fog creeping over Lake Wingra and enveloping unsuspecting picnicers. I was doing so, so good for an entire week, and now here we go again. I might not be able to protect my energy, but I won't let the fog get a hold of my spirit!

Speaking of preserving energy...time for bed.

Updated poke tally (I had a blood draw on Wednesday to check for tumor markers. I'll get the results on chemo day (next Wednesday)):

port 32

right arm 12

tummy 6

left arm 6

right breast 2++

left breast 1+

superior vena cava 1

T9 vertebral body

Many ups, just a few tiny downs

2011-05-30T22:10:00.001-05:00

Guess what cancer patient got on her bike for the first time since October? Oh yea, that would be me. I have found it Hard to exercise during cancer treatment, but tonight I felt ready to get back on the exercise wagon. This is in contrast to my cancer friend Emily, who is super hard-core and has been exercising throughout her breast cancer treatment. I don't know how she does it, but I guess I wasn't a huge exerciser to begin with. I just really love to go on bike rides and to bike to work. The only discomfort on tonight's ride came from the pesky nerve damage in my left arm and its corresponding pit, but the pain was totally ignorable after the first mile. Maybe I'll try biking to work tomorrow. We shall see if I can get up in time. That's the hardest part about resuming biking to work: allowing extra time in the morning for the healthier commute. Once it becomes habit again it's not so hard to wake up earlier.

It has been an awesome weekend with the family. We went camping with the ridiculously amazing Aunt Jacque and had a ball. The girls in particular had a great time. Nature is the best plaything. And if nature is drizzling, cousins and aunts are the best playthings. The grand finale for this holiday weekend was grilling out with our awesome neighbors on Ian's hand-made brick patio. I know, I need to post a picture of. Suffice to say that Ian has skillz.

Despite all of these fantastic escapades, I do have a tiny bit of possible cancer-related news that I haven't shared with you. It should be nothing, so don't you fret, but it is weird. Last Tuesday I noticed a rash. Anywhere else and it wouldn't have been a problem, but as I'm sure you've guessed by now it is on my right breast. (Why do I specify a side? I only have one.) I put hydro-cortisone on it for three days, but it didn't resolve. Reluctantly, I called Dr. Oncologist on Friday. She of course wanted to see me, wrecking my first potential 40-hour work-week since October. She didn't know what it was and sent me to a dermatologist. Dr. Dermatologist didn't know what it was and so he took a sample (aka biopsy). This was all on Friday. I should have results on Tuesday or Wednesday. In the meantime I have discontinued the hydro-cortisone because if the rash is caused by yeast, the hydro-cortisone could aggravate it. The reason we went so far as to take a biopsy before trying more preliminary treatments is because inflammatory breast cancer (my former cancer) can manifest itself awfully similarly to the current rash. But I just had an enormous biopsy of the right breast in April that came back clean, so I'm not terribly concerned. Just itchy and annoyed.

Why on earth would I have yeast suddenly growing in that particular location? Who knows. I don't ask these types of questions anymore, I just make the phone calls to get the issue taken care of.

Also, talk about delayed reaction to the radiation! Oh my goodness I am so red and uncomfortable, and have been for at least a week now. And the blisters! I have had this patch of blisters about the size of a cell phone brewing near my armpit for at least 10 days. They refuse to surface and just sting sting sting. Also, a new thing that just started about three days ago is a trio of blistery lacerations on my side, just behind my arm. I'm guessing they are from my skin spitting. Bummer! I'm doing the same twice-per-day regimen of ointments that I've been doing all along, so I suppose that that's what has saved me from more severe reactions. And yes, there is room for increased severity. I'm counting myself lucky that I only have these relatively few blisters considering the vast area that was radiated. A large area around my incision, for example, is healing very well and is scarcely pink anymore. And besides, it's not like these discomforts have prevented me from doing anything that I want to do. Thank you, chemotherapy, for making me so (en)durable.

Updated poke tally:

port 31

right arm 12

tummy 6

left arm 6

right breast 2++

left breast 1+

superior vena cava 1

T9 vertebral body 1

Audience participation

2011-05-23T21:58:00.000-05:00

I have put a lot of brain power into what to do with this blog as my cancer treatment decreases in intensity. Of course I plan to leave it on the world wide web, just in case it could help someone else who enters into my situation. With them in mind, I plan to add some pages about me and about inflammatory breast cancer. But this still doesn't address the very essence of blogging: short and frequent blurbs by the author. Right now the future of blurbing on Carnations is unclear, but I don't yet feel like throwing in the towel. Maybe my posts will become less frequent, or less regarding cancer, but it seems that I will always find something to say. Lately the scientific community is pestering scientists to create science blogs. A science blog sounds like a tremendous amount of work, like writing a mini-review article every week, but perhaps with practice I could get into that. We all know how much I love science.

That video could use a few more microbes, but I digress. Until I evolve as a blogger, I have an idea to keep this cancer blog afloat. My friend S. of Ames has a lovely biking blog on which she occasionally posts themed pieces by guests. I'm thinking that my blog would greatly benefit from guest posts, too. There is much more to cancer treatment than merely the experience of the patient (see my Lines and overlapping circles post for a visual of some of the various perspectives). I'd like to hear about your experience, and I'd like to share your experience with others.

Because this blog has been entirely selfish thus far, let's keep it that way: this assignment is aimed at those of you who know me in any way at any level (personally, electronically, acquaintance-ally, etc.), and I suggest the topic should be how you've been affected by my cancer (personally, spiritually, lifestyle-ally, etc.). I don't mean this in an egotistical way, although it sure sounds that way. My goal is indeed for the sake of the blog, because I think it's important to maintain continuity within the theme (Heather and breast cancer) at this juncture. But I promise I'm not looking for "Heather rocks, cancer sucks." That's been your mantra in the comments sections for seven months, and for that I am grateful. I'm hoping and guessing that you have much more to say than that. If there are readers who don't know me but who feel inspired to write, by all means do so, as I'd love to hear from you. Let's face it, Zora Neale Hurston said it best when she said, "There is no agony like bearing an untold story inside you."

The only rule is No Swearing, because kids could benefit from this, too. The art form (i.e. poetry, essay, drawing, etc.) is totally up to you. Regarding length, do what works for you, although perhaps 750 words is an appropriate maximum for this blog. As Ms. Cotton would say, in a voice unexpectedly sultry for someone with glasses of a certain thickness and who teaches 10th graders, "A piece of writing should be like a skirt: long enough to cover the subject but short enough to be interesting."

I urge you not to be intimidated by any lack of self-confidence in your own writing prowess. I am willing to help you revise your piece, to find you a kind (and possibly handsome) editor, or to post it raw and unadulterated by me. You decide. Also, you decide your level of anonymity ("Written by a close friend", for example).

Please submit your piece(s) to either my personal email or to my new public email, <30carnations@gmail.com>. No deadline ever, although I'd appreciate if someone were to be inspired soon, to get the ball rolling. Also, I might end the assignment if it's just not working for all of us.

I am grateful that you're even considering participating. This should be good.

No more zaps!

2011-05-19T22:15:00.001-05:00

I suppose I've kept you waiting long enough regarding the question, am I done with radiation? The short answer is YES, and the reason for my delinquency is that I've been doing so very much LIVING that I haven't taken the time to post. Yes, posting is not about having the time, but taking the time.

I was a bundle of nerves when I saw Dr. Radiation Oncologist on Tuesday, fully expecting him to scoff at my pinkness and sentence me to another week of radiation in order to achieve the ambiguous yet desired redness. (My chest wall has survived remarkably well and looks like it has been to Puerto Vallarta rather than to Radiation Oncology...I wish). Instead, he said, "you're done". In my confusion I found myself nearly arguing for more radiation, saying things like, "but my skin was never very red!" It turns out that my misconception laid in the purpose of the bonus radiation: I thought that the bonus radiation doses were to stimulate redness, but the bonus radiation doses were merely a radiation boost regardless of redness. Yes, redness was the goal for the original three weeks, and when that wasn't achieved the boosts were prescribed with no more redness in mind. Said another way, the redness was his barometer for how effective the original radiation therapy was, and when the redness didn't cross his threshold, he prescribed the 2 days of boosts to ensure the efficacy of the radiation course, regardless of redness. Confusing, I know, but hopefully this makes sense and anyway, I'm DONE!

Herceptin chemo yesterday was delightfully uneventful. The biggest thing is that we scheduled my next PET scan for June 6th, and Dr. Oncologist will report the results to me on my June 8th herceptin day. The purpose of this PET scan is to look for metastatic cancer. The inflammatory breast cancer is super duper ultra gone, but my T9 vertebral body was suspicious on my last PET scan in March. Pesky spine bone that doesn't hurt or anything! The biopsy of said bone was inconclusive, revealing atypical cells but nothing specifically cancer or not cancer (read some of those early March posts if you want a more in-depth review). So, PET scan in June. I'm choosing not to worry about it but rather go on riding the happiness wave. Nothing I can do about it anyway.

Frank, your celebratory song suggestions were more than excellent, and I am grateful. I chose, however, to take it as a challenge to come up with an even better one. I submit to you and your fellow Carnations followers:

It's Oh So Quiet, by Bjork. Not surprising, since we all know by now that I tend to go for the jazzy instrumentals. And another selection (Tchakovsky's Chinese Dance, from The Nutcracker) that sounds like spring despite its perpetual winter holiday employment and includes a rather goofy dance (this one's for you, Hol):

I haven't felt this good since October 20th, 2010

2011-05-16T22:24:00.002-05:00

An excerpt from The Lovesong of J. Alfred Prufrock, by T. S. Eliot, that describes how I felt for seven months during cancer treatment:

And the afternoon, the evening, sleeps so peacefully!
Smoothed by long fingers,
Asleep … tired … or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?
But though I have wept and fasted, wept and prayed,
Though I have seen my head [grown slightly bald] brought in upon a platter,
I am no prophet—and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid

= = = = =

A quotation from the journal I wrote on our family vacation to Hawaii in 2005 that describes how I've felt for the past three days, "Oh my goodness I have been so excited that I haven't been able to sleep for days!...I [am] seriously as happy as I get."

= = = = =

This is the best way I could think of to describe for you how great it is to have energy and be coherent. This is how great I'm feeling IN SPITE OF the pending recovering (chest wall, throat, left arm). This is...glorious.

Sounds like I'm going to have to redefine my happiness scale with a new maximum. Might I suggest, "frighteningly happy"?

On the verge of greatness

2011-05-14T12:23:00.001-05:00

The surgical follow-up appointment on Tuesday went well. Dr. Surgeon said that everything is healing as it should, and she complimented my range of motion with my left arm. The nerve pain under my left arm is still present but is no longer a constant bother. I'm used to clothes and their constant rubbing, but the nerve still fires up if a kid grabs my arm. My right breast is still very tender despite the needle-localized biopsy (link) taking place over a month ago. I mentioned this ongoing soreness, in case it was a sign of trouble, but Dr. Surgeon just nodded and said that it will continue to be tender for quite some time. Interesting.

The best part of any surgical appointment is that Ian and I get a date in Iowa City. That town has some fantastic restaurants, sporting some ultra-fantastic vegetarian fare for yours truly. This time, however, Ian got to choose the dining spot because I didn’t think I could eat at any of my top choices, given the ongoing state of my throat. So we went to a burger joint and I got a gigantic lettuce salad, sans croutons. Then we went to Whitey’s ice cream parlor and I got my real meal: a salted-carmel milkshake. Oooo was it delicious. My throat is much improved, now, so I'd better enjoy the frozen treats while I still have the excuse.

Sitting here now it’s hard to believe that I’m already done with the four bonus radiation doses that had me all worked up on Monday. (Yea, I was pretty depressed. The Ms. Brightside post was as much an exercise for my morale as it was an information download to you.) One of the radiation technicians thought that my chest looked redder on Thursday, so that’s good. I can’t see the difference, but I think I can feel it. I feel substantially sorer now than ever before; hopefully that’s a sign of success. I’ll go in on Monday for Dr. Radiation Oncologist to assess again. It’s unclear how long I’ll be on this guess-and-check schedule, or at what point he’ll give up the redness crusade. As a result, I’ll still feel on the radiation hook until Monday. I’m sure I can nonetheless manage to work in some mini-celebrating this weekend. The girls and I had a dance party this morning and made our own music video to Tainted Love. Awesome.

I am really starting to feel great. I have another week to be on antibiotics et al. for the sinus infection, and I have chemo next Wednesday, but then I’ll have three weeks with NO doctor’s appointments. Wow. I can’t even imagine it.

Between feeling good and having time on my hands, I should be able to get some things done in my life. At home I feel about a week behind in my chores and a month behind in my correspondences. I have fallen off the good-at-sending-packages-and-letters wagon, and I hope to get back on it. The only thing I don’t feel like I failed at throughout this whole ordeal was spending quality time with my kids, which is as it should be. On some days I remember wishing I could do more or participate differently, but I always made time for them. There was always a puzzle to be put together.

Work, on the other hand…ugh, I feel like I passed through a time warp from October 19^th to now, with random dollops of productivity in between. Most of that productivity was really great, but remembering it and synthesizing it is a chore. Thank goodness for lab notebooks! If I can just get my butt in the science chair for an appreciable amount of time, I’ll discover the cohesion and generate some momentum. Next week is the beginning of some greatness, I can feel it.

Ms. Brightside

2011-05-09T21:25:00.001-05:00

Those cancer cells are going to be super dead by the time they get two more days, or four more doses, of both photon AND electron radiation.
I'll get to celebrate finishing radiation a second time, which is super because I biffed the celebration the first time.
Ian and I are going to Iowa City tomorrow for a surgical follow-up appointment, so I don't have to resume radiation tomorrow.
It shouldn't be a problem to eat smoothies for an extra week or so because I'm not yet tired of them and they are quite good for me.
It's a good thing I'm on antibiotic, anti-fungal, and antihistamine drugs since my immune system will need help for a wee bit longer and one of my kids is coming down with something.
The sun has been out for several days, warming our garden and our spirits, and hopefully drying up the last of the winter cold viruses.
My hair is so plentiful that I resumed using conditioner and I haven't worn a scarf or hat in three days.
It's still short enough that when the wind blows my hair, I don't have to worry about it getting messed up.
I have a ton of people helping me and supporting me, no matter how long it takes to beat this crap.

Radiation in pictures

2011-05-07T15:22:00.001-05:00

I am pleased to announce that I am finally feeling Monumentally better. The sinuses, and with them the ridiculous fatigue, are at last under control. Now I just have a sore and itchy trunk, a terribly sore throat, a fungal (thrush) infection in my mouth, and normal cancer-fighting fatigue. Despite how it sounds, this is an entirely manageable scope of health problems.

On Monday I have to see Dr. Radiation Oncologist again already. He will evaluate how red my skin is, and if it's not red enough, I might have to do more radiation. Just the electrons, I think. We followed an inflammatory breast cancer protocol for the photon radiation therapy, but there are no such protocols for electron therapy. Dr. Radiation Oncologist says that the electron therapy is "an art form". The goal is to get the skin good and red, which a sign that both ordinary and cancer things are dying under there, but to stop before the skin breaks down. With twice per day radiation, the maximum redness will manifest approximately one week after the last dose. Therefore we stopped the electron radiation at the same time as the photon radiation to give my skin time to worsen. And it is indeed getting worse. It's pink and splotchy, with a handful of pinhead pustules and streaks of new pigmentation. But it's not RED. So I'm appealing to my readers to meditate, pray, wish, or send positive thoughts that my left chest wall, from sternum to scapula, gets WORSE in the next two days. I'd appreciate it.

In other news, did you know that you can ingest aloe vera gel? My mother-in-law bought me a bottle, and I mix a few ounces with a glass of juice. I still take liquid tylenol with codeine for my burned throat, but the aloe vera actually decreases the remaining pain. This amazes me on many levels. The other thing that decreases the pain is remembering that I have a burned throat before I put food in my mouth. Sometimes I just want to casually eat something like a normal person, and it's not until my toes curl upon swallowing that I remember I'm not a normal person right now. If I just stick with the smoothies I am so much happier. I think my first healed-throat meal will be hard-shell taco night. Mmmm, real food.

And last but not least, pictures! My fantastic mother-in-law came with me to a radiation session and took some marvelous pictures. I'll put a few below, but please click here to view the entire radiation photo essay.

I'm laying on the radiation table, and the machine is tilted to the proper angle. You can see the lasers that get lined up with my tattoos to make sure that my body is in the right position for radiation.

This is a screen that the technicians see while I am getting radiated. I don't know what everything is, but you can see one of my fabulous films of which I spoke in Looking great in films.

Crawling

2011-05-03T19:31:00.002-05:00

I definitely crawled over the radiation finish line today. The lovely radiation technicians made me a certificate, and a hospital volunteer offered to buy me a root beer, but I don't feel celebratory at all. Maybe it hasn't sunk in yet, and maybe tomorrow I'll be excited about it when I don't have to start my day with some zaps. But I just feel so crummy. Believe me, I'll celebrate at some point, in true hbomb style. It's just that this girl typing on her cancer blog does not feel like the hbomb.

The brief report is that my chest wall is like the worst sunburn ever, and it'll actually peak in awfulness one week from today. When I touch it, I get nauseous. My throat hurts, mostly from the radiation but I have a new bonus throat pain from a change in the sinus infection. This bonus pain shoots up into my ears. That makes me nauseous, too. My sinuses are improving but are still a bit plugged up, and the drainage is gross. Finally, I'm tired. So tired. I took a 4-hour nap today.

That's enough of that.

I have two bright sides to share with you. First, I have discovered the delights that are homemade smoothies. I just use fruit, a tiny bit of sorbet, and water. I'm keeping it simple because I'm trying to use them to stay hydrated, since drinking water is so painful. My favorite so far is 1 c. water, 3/4 c. frozen blueberries, and 1/4 c. mango sorbet. I can always add yogurt or powdered milk if I need more calories, but right now hydration is my biggest challenge.

Bright side number two is my awesome family. Apparently I sounded pitiful in my last blog post because my sister, dad, and step-mom all converged on my house last night to help out. It was fantastic to have all of that in-person support. Unfortunately, I had no idea what they could do for me. I just needed to take my meds, wash my sinuses, and sleep. But I suppose that them being here to lift my spirits was the best help of all.

Time to get back to the resting.

Mind over matter

2011-04-29T10:30:00.004-05:00

I only have 5 doses of radiation left. Why do I feel so defeated? Answers: 1) real, chemo-esque fatigue has set in; 2) I am entering week 3 of a sinus infection and I'm grumpy about it; 3) my throat is burned, making it painful to swallow and therefore difficult to stay nourished and hydrated.

Hmmm. Justifying my depression doesn't make me feel any better. To feel better, I am going to employ my tried and true methods of Indulging Myself and Mind over Matter.

1) Indulge the fatigue. It has gotten quite severe and can no longer be denied. I don't know why it has gotten so bad; perhaps my low white counts are a contributing factor? Below is a graph of my white counts that I snagged from my electronic medical chart. You can see that as of Wednesday (4/27) they have dippped down again, ending their brief upward trend. The blue dashed lines show the normal range for white blood cell counts.

I went to work yesterday and tried to think, revealing my lacking cognitive abilities and exacerbating the fatigue. Sigh. Today I am resting, with the exception of this post and the two short walks to radiation. I am going to lay on the couch or in bed, do some puzzles with the ladies, and read a delicious book. I can't wait for all of this to be over so I can get back to my exciting science!

2) The sinus infection is no doubt contributing to the fatigue, but mostly it is responsible for my grumpiness. The endless drainage is getting old. Yesterday I saw Dr. Ear Nose and Throat, who stuck a loooooong periscope followed by a loooooong Q-tip up my nose and took some samples. These samples will be cultured for bacteria and fungi, and I will be given the appropriate antibiotic based on who has wrongfully colonized my sinuses. In the meantime, he gave me a sinus wash that contains the antibiotic gentamycin. I am to squirt 90 milliliters of this antibiotic solution up my nose twice per day, and he seems to have given me a lifetime supply (I think it's two liters). This is certainly a situation in which I need mind over matter, because all of that fluid rushing through my head sort of feels like I'm drowning. But I'm not. So I close my eyes tightly, open my mouth wide, and squirt the solution up one nostril. Gravity pulls it out of the other nostril almost instantly, and like a whale clearing its blow-hole I snort out the remaining fluid. Yea. Grumpy. But it has to get better soon.

3) The radiation is burning my esophagus and swallowing is painful. Dr. Radiation Oncologist gave me some liquid tylenol with codeine, and that helps a little bit. Also, I met with a dietitian to get some tips on what foods will feel better. She said that water will be one of the most painful things, and it is. She said to go for things with a little bit of thickness to them, but not too much texture. For example, mashed potatoes, smoothies, cream of wheat, and ice cream. These have all been excellent suggestions, and indeed I am a bit more comfortable at mealtimes eating mushy foods such as these. Ice cream in particular is fantastic because the cold is a bit numbing. Overcoming this problem is definitely a case of mind over matter because I have to stay hydrated in order to ease problems 1 and 2. Grimace and take it down, hbomb.

I'll get a nice break from radiation over the weekend, and then I should finish up on Tuesday. I'll definitely be weakly stumbling over this finish line. No triumphant arms pumping the air. At this rate I'll be lucky if I'm not crawling.

Looking great in films

2011-04-27T14:31:00.000-05:00

My problems are relatively unchanged from my last post: I am still blowing massive snot wads, it is still cloudy, I still have cancer-itis. It is strange to be in a static state for this long, but I suppose I shouldn't complain since nothing is that bad. And things haven't been truly static. The radiation is starting to give me esophageal burns, so that's a change. It sort of feels like a perpetual lump in my throat, and it hurts to swallow hard or to swallow scratchy things, like toast. Also, the skin that is being irradiated is quite pink, but that's all. No blisters or anything yet.

Dr. Radiation Oncologist is quite pleased with the way my skin is holding up, and indeed with the way I am holding up. He said that my "films [X-rays] have been incredible. God, do I have to tell you that you're perfect?" That was a lovely albeit unlikely compliment that day. I never expected to be complimented on how I look in X-rays. It's a handy thing to look good in, considering they see right through the sweatpants and baldness.

Today has been a medically busy day. This morning I had my blood drawn, then radiation, then chemotherapy (triple-dose herceptin). I reported to Dr. Oncologist about my epic and ongoing head cold, which resulted in a CT scan this afternoon to determine the magnitude to the probable sinus infection. In an hour I'll head back over for the second dose of radiation, and while I'm at the clinic I'll pop up to get the CT scan results from Dr. O. I wonder if I look as fantastic in CT scans as I do in X-rays. Maybe X-rays are more my "color".

It was a nice holiday weekend for me and the family. The girls really enjoyed their Easter baskets and spending time with the extended family. My dad rented a log splitter for the weekend, and so many of my relatives participated in seven hours of log splitting (aka earned their dinner). It was certainly a new twist on the idea of "breaking bread together"--breaking logs together. The amount of work accomplished was inspiring; maybe I'll host Easter next year and everyone can build me a garage. Despite my teases, it was indeed a lovely day to be outside, and I'm sure we'll all contribute to the burning of the logs that were split. Also, it was great to have the chance to "give back" to my dad, who has done so much, for so many, for so long. Love you, dad.

Patience and patients

2011-04-23T09:33:00.001-05:00

I am so tired of being treated for cancer. I know I'm almost done with all of the hardest stuff, but I'm finding it hard to be patient with being a patient. It's a lot like senior-itis. You know, the condition of senior-level students near the end of the semester when they just stop caring because in they're head they're already graduated. Yep, I'm fighting the cancer-itis. I go to radiation with a weary yet impatient sort of attitude, I often forget to put soothing ointment on my skin, and I'm doing my physical therapy half as often as I should. In my mind I've already crossed the cancer finish-line, when in actuality I still have at least 6 months to go (1.5 weeks of radiation, possible right mastectomy, herceptin through October).

What is UP with THAT? I should be doing a better job of taking care of myself.

Part of the problem is that I have had a horrific cold this week. The magnitude of the cold is certainly related to the cancer treatment. I'm usually the person who neither misses work nor medicates for a cold. This was soooo not true this time. The cold knocked me down and stomped on my head. I asked Dr. Radiation Oncologist if I was more susceptible to the cold because of the radiation, and he said yes, plus my white counts are still low from chemo, plus I have two little kids, plus I'm working. I was sheepish then and promised to go get some rest. Thank you, Ian, for enabling some epic sleeping for this mom-scientist this week.

Also, the sun has not made an appearance in...2 weeks? I've lost track. My mood is not usually affected by prolonged cloud-cover, but in light of my patient-related difficulties I think the lack of sunshine is contributing to my cancer-itis. I've lost patience with the gloom.

But at last the tables have turned! I am delighted to report that 1) I have the upper hand on the cold, 2) the sun is out today, and 3) the Easter bunny is ready to dazzle and delight some special ladies this weekend! I think I'll pack up my impatience, slip it in the Easter bunny's basket, and watch it hop away. I have no use for it.

Last night I had a dream that Azalea was wearing a light blue dress as she left the house, headed to prom. Eleanor and I were standing shoulder-to-shoulder in the doorway, beaming at the grown princess, our heads touching. Both girls, incidentally, were taller than me, which is to say Quite tall. Despite the obvious connection between this vision and the home movie in my previous post, I say huzzah for visions of myself living for another 15 years. Hopefully this vision will help remind me of the importance of staying focused throughout the remainder of my treatment regardless of the cancer-itis.

Believe in things you don't understand

2011-04-19T21:36:00.000-05:00

As I was hoping last week, I have indeed adjusted to this crazy radiation schedule. It is not nearly as exhausting as it was last week, although I find it hard to believe that it's only been one week. The electron doses started on Monday and just take an extra few minutes. Well, the electron dose itself takes only ~20 seconds, but it takes a minute or two for the technicians to get things set up. My skin is starting to turn a little bit pink, as predicted. Still not red. Still not sore. Huzzah!

In other health-related news, I have 100% range of motion in my left arm. It is not pain-free, in neither the nerves nor the muscles, so I will continue physical therapy for a bit. I do my exercises every day, and I can feel improvement every day. I've started to forget that I used to bump into a breast when I reached across my body. I've even grown accustomed to the burning nerve pain in my arm. It's sensitive, but not crippling. Again, huzzah!

While I was getting zapped today, I was thinking about all of the particles that were poking through my skin. I couldn't feel these particles, but I nonetheless thought of my poke tally. Was there a way to calculate how many particles (photons or electrons) were "poking" me in a single dose of radiation? So that I could start a particle poke tally? I asked this question of one of the fabulous technicians, and she introduced me to the physicist. He seemed delighted to talk shop with someone and explained that the radiation machine is calibrated by measuring how it ionizes a known amount of air. This is then converted mathematically into the ionization of an amount of liquid, liquid being of interest because a human body is ~60% liquid (today mine is ~70% liquid due to the incredible amount of snot I'm producing; thank you sweet Eleanor for giving me your cold). This is further converted to the unit Joules per gram, and he said from here we could calculate exactly how many Joules-per-gram of radiation I am receiving in a single dose. It sounded like it would take a fair bit of effort on his part, and because this is an unnecessary exercise I said no thank you. He further explained that the machine is tested every morning to see that it functions within good parameters, and if it ever falls out of those parameters he re-calibrates it with the air ionization thing. He also said that he belongs to some Houston-based national radiation calibration organization and follows their calibration protocol annually. I came away from the discussion with something much better than a particle poke tally: confidence in the machine and the people running it. But part of me still wants to know something quantitative about this radiation rather than the empirical "20 seconds of photons here, 10 seconds of photons there, and 20 seconds of electrons there." It's a little hard for me to grasp, but I guess I'm just biased towards whole atoms.

It has been a cold, rainy, sleety day here today. To combat the cooped-up feeling, the girls and I had a disco dance party this evening. Cinderella even made an appearance:

Pandora radio was our DJ, and one of the songs that popped up was Stevie Wonder's Superstition. I know I've already posted a Stevie Wonder song, but this one really resonated with my thoughts after the discussion with the physicist today. Radiation at times feels like it could be superstitious: I lay there with my arms above my head while a machine waves an over-sized magic wand above my former cancer. Bibbity bobbity ZAP! and the cancer is gone. I know it's not superstition, however, and that's why I've found another connection between this song and radiation. The clavinet riff, which is the song's trademark, sounds like the buzzing noise made by the radiation machine when it is zapping me. I wish radiation were as funky as Stevie. Below is the jam-session version of Superstition, performed on Sesame Street. Smile.

And the afternoon, the evening, sleeps so peacefully!
Smoothed by long fingers,
Asleep … tired … or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?
But though I have wept and fasted, wept and prayed,
Though I have seen my head [grown slightly bald] brought in upon a platter,
I am no prophet—and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid