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.
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.
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!
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.
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!
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!
