What a ride

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

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

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

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

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

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?

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

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.