33

I sincerely hope that no one ever reads this blog thinking I have anything useful to share from a clinical standpoint because much of the time, I'm just trying to keep track of what day it is. Even this whole "counts" thing has me kind of puzzled, although slowly, I'd like to think I'm learning. From what I have gathered, there are two important numbers -- first, the 4.0 number, which means that there are 4,000 white blood cells in the sample; and second, this "absolute neutrophil count" or "ANC" thing which is a measure of particular white blood cells that are effective in fighting off infection. When Colleen told me my counts were zero she was saying that my ANC number was zero. So while we're watching the overall white blood cell count and hoping for 4.0 as fast as possible, my oncology team is most concerned with the ANC number, and they want it to be 500 before they feel comfortable releasing me back into the big bad germ-infested world.

As I posted in a brief entry this morning ("Trapped"), my overall white blood cell count came back at a pathetic 1.8, a far cry from the 2.8 I was hoping for. When Colleen and another doctor from Dr. Bunnell's team came in this morning to examine me, Colleen told me my current ANC count -- a whopping 33. Nope, I didn't forget a digit. Just Larry Bird's good ole 33. My jaw dropped. You've got to be kidding me. That's it? And I need to reach 500? Well me oh my. Thirty-freaking-three. The team thinks that Wednesday could be my big release day, but the doctor said it may take longer than that. And here I thought I'd have been home by lunch time this past Saturday. Very poor guesstimate.

And so today has been much of the same. I started the day with my usual blood draw and shot to the stomach of something that is supposed to help prevent blood clots. The IV antibiotics continue around the clock, and they must be working because I haven't spiked a fever at all today. My throat is still sore and my right gland is so swollen the nurse could see it from afar, but I'm feeling better and appreciating every chill-free and sweat-free minute.

After Sean headed off to work this morning, I took a shower, and not just any shower. A shower of joyful redemption. Here's why. After my double mastectomy, I couldn't shower for eleven days and for each of those days, I longed for that first shower (plus, back then I had hair, so showers felt more necessary than they do now). When I finally got my chance, it felt nice, but I was so distracted by how strange it felt to have water fall on my numb boobs that I really didn't enjoy it all that much. Plus, we were rushing to get to Teddy's soccer practice so I had to be quick. The whole experience just wasn't what I had hoped it would be.

My shower in the hospital yesterday and today, however, now those were some awesome showers. Thanks to fevers that make me sweat through the sheets (cute, I know), I was ready to get cleaned up and I took my sweet ole time under the perfect water pressure of my hospital shower. It was incredible, and total redemption for that elusive perfect shower of late September.

My Mom went to work today and popped over in between meetings to bring me lunch. After she left, I was on my own, which was actually really nice. When I started to get stir crazy I went shopping. Yep, back to the gift shop. Believe it or not, they had new merchandise even from yesterday! I decided that I needed some Christmas cheer in my room so I got myself (and Teddy and Annabel) a "Christmas in Your Pocket" tree and some Christmas socks. (And yes, when you spend more than 23 hours a day in a hospital bed, you tend to Instagram things that really don't need to be photographed, like shown here.)

I know I've become a regular to the gift shop, but I'm not the only one. For instance, twice before I have seen a mother pushing her child in a wheel chair. I couldn't tell the child's gender or age because he or she had a helmet on, clearly recovering from some sort of brain surgery. Today we all found ourselves giggling around the same basket of stuffed animals that were shaped like body parts and we got to talking. The mother was beautiful, energetic, and full of smiles. We exchanged names, but let's call her Jane for anonymity. The daughter was 26 years old, and we'll call her Amy. Through our masks we talked and Amy told me how she had been in the hospital since June. Yes, June. And I was complaining about being here since Friday. She had undergone a successful lung transplant but shortly thereafter, she suffered a stroke and has been in the hospital ever since. She had to learn to talk again and it seems like she may still be learning how to walk again. We chatted a bit more and said that we'd see each other around.

The very tiny bit I learned of Amy's story inspires me, angers me, and flat out terrifies me. First, for the inspiration part... Tonight was perhaps the most wonderful and difficult night here yet because Brian brought the kids in to visit. After drawing on my mask to make it look like the Cat in the Hat's face, Annabel was slightly less frightened of me, and we all journeyed to the cafeteria for dinner. We brought our grilled cheeses and pizza back up to the room and had so much fun for an hour (I even got to be disconnected from my antibiotics!).

When it was time to go, Teddy got sad. Really sad. I faked that I wasn't and told him all the reasons why this would all be OK, but I just wanted to stand there and stomp my feet and cry too. Annabel was fine at first, giving me a big hug and saying See ya, but I heard her wailing as I shut the door to my room. I'm sure Brian's heart was breaking just like mine was. It was awful. As I sat back down in my bed, I tried to think of anything that would make me feel better. And I remembered Amy. If that young woman can tough out this place since June, I could get through a few more nights.

But as I said, her story angers me too. Why couldn't that girl just catch a break? Was fighting through the recovery of a lung transplant, never mind whatever lead up to it, not enough? Why a stroke? Why her? I've been told I shouldn't ask Why throughout this whole thing. Which, in my stream of consciousness actually reminds me that I'm going to go ahead and answer my own why. I think I got breast cancer because of birth control pills. I don't have any clinical reason to think it, but I do. And even if it holds no truth, I don't care. Because it makes me feel better to think that what caused this is something that I will never do again. So that's that. Again, don't take it as any sort of clinical knowledge, but one day I may get the courage up to ask Dr. Bunnell what he thinks of my theory.

Lastly, Amy's story terrifies me because every now and then I wonder if this process really will lead to Totally Recovery, Full Stop. Amy deserved a Total Recovery, Full Stop after her lung transplant, but one thing lead to a horrible other thing and she's still working towards her Checkmate. The nightmare that haunts me every day is my memory of August 8, happening again. Because only this time can I hope for a cure. If, Heaven forbid, there's a next time, I could only hope for time. So cure it must be. Better yet, cure it shall be.

I have only cried once since I have been here, and it happened today when I least expected it. My friend Heather, one of the most selfless people I have ever met, had called to beg me to allow her to help with the kids, especially now that hockey season has started. She knows Annabel enough to know that Annabel gives serious attitude to people when she first meets them so Heather said she wanted to stop by the house when family was there so that Annabel could get to know her. I told her she could stop by tomorrow night because Brian has hockey and then is coming in to stay with me. Then I remembered that tomorrow is Brian's birthday. Heather asked me if the kids would like it if she brought cupcakes for them to decorate. And that's when I lost it. I sobbed over the phone. Heather probably thought it was because I was so sad I couldn't be there, and partly, that was it. But it was way more of something else. It was more one of those moment of absolute clarity that we have friends and family that are so thoughtful, so giving, so kind, that they pick up the pieces when they feel, or are, broken. They light candles at churches for us, and they pray. They cook us dinner, bring us snacks, babysit, rake leaves, and walk. They make cupcakes for the kids to decorate for Brian's birthday when I can't. I cried because I am overwhelmingly grateful.

When I mentioned Brian's birthday today he chuckled because he totally forgot. I can't imagine why. Well, he and I will celebrate his 33rd birthday together at the Brigham tomorrow night. Maybe I can find a little germ-free cupcake we can share. It's not really the birthday date either of us had dreamed of, but there will be plenty of those in the future. And tomorrow when we toast our neutropenic water bottles to Brian's birthday, we will also toast my ANC, which may have stopped today at 33 as a tribute to my husband, but which I'm confident will have moved past that milestone by tomorrow.

*  *  * 

Update from November 27, 2012, 3:13pm

I can't believe that some of the most incredible things can happen from a hospital room and a gift shop. After reading the last comment posted below from an anonymous reader (thank you so much!) I Googled Amy's real name (Ashley) and her hometown (Scarborough, Maine). I found her Facebook page: Air for Ashley and have been reading through her most inspiring story. How hilarious that Ashley and Joy showed up in my blog and I showed up in theirs! I highly recommend a cyber-visit to Ashley's page for some unbelievable evidence of love, strength, humor, and perseverance. Who knew I would walk by two real-life heros while buying Christmas socks?