When my sister and I were young and would travel to Cape Cod beaches with my family we had a strange little play ritual that still comes to mind every time I go to the beach now. We'd write our names or draw smiley faces with our toes in the firm, darkened sand of the ocean's edge. Inevitably, waves would crash and travel up the shore engulfing our writings and taking the granular canvas away with them. As this process repeated itself over and over, we'd sing into the ocean breeze: "Everything washes away when I'm trying to write it" in expert harmony to a tune we crafted just for to the sentence. That was the whole song – over and over.
This is what is happening in my life now, except instead of sand, it involves entering, erasing, editing and reentering appointment and travel dates into my iPhone calendar. If I was writing in an old fashioned date book, I would have long ago instituted a pencil-only rule.
On Tuesday, Craig, my sister and I traveled down to NYC for more Sloan appointments. I met with Dr. Sauter to go over my PET and CT Scan results in more detail and what they meant for **THE PLAN** and stuck my arm out in the clinic for further pre-transplant bloodwork. My sister had an appointment with a transplant nurse who talked with her about her donor duties and put her through a very thorough physical exam, a chest x-ray and an EKG of her heart topped off with lots of bloodwork. Twelve vials out of me. Thirteen out of her. It was a four-hour ordeal of us passing like ships in the night from oncology suite to oncology suite handed off like relay batons from one member of the medical team to another. Again, we always have to plan for the day being much longer than expected. Never leave the house without a snack pack.
To balance out the medical appointments with a fun reason to make the 3-hour trek into the city, we met up with my fellow cancer survivor friend and i2y Chief Cancer Anarchist, Jack Bouffard, to take in the Yankees vs. Orioles game in the new stadium. This is something I won't be able to do once isolation sets in ... especially the subway ride which involved us standing and rubbing buns with strangers of all sorts. It was a good
thing that my white blood cell counts were so high and that I had the Purell at the ready. Dr. Sauter was more concerned with who the Yanks were playing than me catching anything in a massive open stadium. It was only my second professional game ever and even though I'm a BoSox fan, it was a blast. When in Rome ... or New York ... .
We left NYC encouraged by the very favorable response I had to the GND chemo as evidenced by my clean scans. Some of my internal lymph nodes were still enlarged, but not showing any cancer activity. This is my body doing clean up and scar tissue developing in those stretched-to-the-limits nodes. There was just one tiny hot spot, less than a centimeter in the sternum area of my chest. It's been a stubborn area on all of my PET Scans. However, the GND (and I like to think my visualizations and exercise) shrunk it down more than 2/3 from the size it was on my July scan.
For protocol reasons my sister had to re-swab her cheeks and get further HLA typing bloodwork to make double sure that she is a DNA match. This will take two weeks to process. Her other bloodwork, which is checking for any viruses, will also take a few days for review. The plan was that in the meantime I would come in for another marathon day for body function testing – breathing, heart, dental, etc. Then, once we got the go-ahead results on my sister I'd be ready to start the transplant process. I was psyched to have two weeks when I'd have no treatment and would be feeling well. But at the same time, we and the doctor were fairly concerned with letting me go untreated for that long. With that timeframe it would mean that by the time I entered transplant it would be five weeks since my last chemo. We've learned that the cancer is quite aggressive and grew back in less than a month last time I was left naked of drugs.
Turns out that I don't need to worry about that. And, I don't need to worry about how I would spend all of that beautiful appointment/treatment-free time before the NYC move. Dr. Sauter called me yesterday to tell me that he discussed things further with the transplant team, specifically with Dr. Craig Moskowitz, a world-renowned lymphoma expert, and the conclusion was that they want to keep steady this very positive near-remission state that I'm currently in. Dr. Dailey was also conferenced with and agrees with the plan. It's just too risky to wait another week. It was reiterated that what I really need is my sister's stem cells to go after this. The GND chemo is merely a temporary Band-Aid to stop the bleeding.
So today, with half-a-day's notice, I was back at Hartford Hospital for my first infusion in the start of a third round of GND. Obviously I didn't want to go. In fact I was a very angry person this morning (poor husband) and literally had to talk myself down from throwing my ceramic cereal bowl across the kitchen floor just for the satisfaction of watching it shatter into pieces.
No one wants to go to chemo, but you do it because it is what is going to save your life. I was feeling so close to myself again: energy level rising, counts good, hair getting longer and showing some natural blonde highlights! The idea of feeling shitty again yet another time before I then feel shitty from the transplant for a very long time is not easy to swallow. But luckily, as the doctors keep telling me, I tolerate chemo "very well," which is why they're not hesitant to do this.
As long as I don't crash too hard from this infusion, we're shooting to do two weeks in a row of the chemo rather than the every-other-week regimen I had switched to so that we can keep the transplant start date sooner. This is expected now for the first week in October ("written" in pencil.) It's expected that I'll drop very low from this third cycle and will likely need transfusions but that's something that can be controlled. As "they" say: No pain, no gain, right?
Regardless, I completely agree with the decision of the Sloan doctors and it actually does put me at more ease to know we're proactively keeping things at bay – with the added hope of shrinking that hot spot altogether. I was actually very happy to get that call yesterday.
Now I'm dealing with wooziness, immediate achiness and fatigue, but the infusion today went fine. Craig kept me company and the sweet, sweet nurse, Anne, that I had the pleasure of working with today made a world of difference. So did the familiar faces and shared laughs with the secretaries and lab techs that I've gotten to know so well. I had already said my goodbyes to them weeks ago, but here I was, back again, just falling into suit. It actually put a lump in my throat. Quickly my anger simmered down and I was able to smile, very happy that we still have all 10 cereal bowls in tact.