Thursday, June 9, marked Day -7, the first day in my allogeneic stem cell transplant process. And it's a process for sure. Thinking forward to the summer and knowing that Craig would need to be back and forth between New York City and Connecticut on several occasions to check on things and attend events, his Uncle Drew was gracious enough to offer to drive us into the city from his Stamford home and offer up a parking space for Craig's car in their driveway, which now sits walking distance to the Metro North train stop. It worked out perfectly.
Once at Memorial Sloan-Kettering Cancer Center in Manhattan, I checked into the Day Hospital floor where I had my new Hickman catheter line placed. The catheter has three prongs (or octopus dangles, as Craig calls them). This gives the ability for many things to be going into me or taken out of me at once and now that I've been hooked up to this massive IV pump for many days I can see why that is necessary.
The procedure was pretty painless. Unlike at Yale, here they put me under conscious sedation so the process was much less horrifying than when I had the Quentin catheter placed for my auto transplant. The surgeon put a knick in my skin just below the collarbone and shimmied the line down into my jugular vein. It then pops back out lower in my chest and dangles out of me. It is now an extension of me and that extension is constantly connected to my massive IV pole, which has six pumps and two "brains." I have come to call it Jinx, named affectionately after the robot in the fantastically 80s movie Space Camp. We have a love/hate relationship that’s for sure. I love it because it gives me what I need but I hate it because it is cumbersome and clunky, its alarms go off a lot and feels like I’m dragging around shackles.
The line is heavy with the weight of all the tubing against the still tender insertion site. After much experimentation and nursing expertise over the first few days I've found that button-up shirts work best so that I can pop the lines out through the openings between the buttons then pin it up to a yellow tube necklace outside of my shirt to alleviate the weight on my tender skin. On his own accord – and to my total surprise – my adorable husband went to H&M and bought me a couple button down shirts since I was not prepared for this scenario. It makes life a lot easier since I cannot be disconnected, even for a shower. Jinx comes with me and hangs out close outside the shower curtain. I wash up around the tubes that dangle over my belly.
After my catheter insertion I was admitted to the 8th floor transplant unit. The door to my room shut and besides a one time brief escape with the physical therapist, I am not able to leave it. The isolation restrictions here are very tight. After five days in the very awkward and small set-up of my corner room the walls started to close in on me. It was difficult to get around the room with Jinx attached to me. I hit my head on him several times. I had a bed, two chairs, a little counter with a computer, a TV, a DVD player from which we hooked up a Wii, and of course my itty bitty bathroom and shower for me. Everything we needed, but just all jammed in like a jig-saw puzzle. The frustration of the confinement – nowhere to put anything, nowhere to stretch out – led to an anxiety attack on day 5 after a particularly difficult fight with the sticky shower curtain and the inability to clean my body without soaking the machine attached to me.
My nurse knew that something was wrong when I was all welled up with tears and told her I had trouble breathing and thought that it was just the anxiety of everything taking over. She asked what it was specifically and I told her the smallness, oh the smallness, of the room. She gave me some Ativan and came back later with the news that a larger room had opened up and it was mine. We moved to the best real estate on the floor Monday night. My view is beautiful. My window faces East and brings in warm morning sun. It’s all decorated now with pictures and books and thoughtful trinkets people have sent me for encouragement. There is a full couch and the bathroom even has a full counter where I can lay out my toiletries and breathe a little in there. The change has done wonders for my mental health. I knew from some insiders to always get your name on the room upgrade list but I never imagined the difference would be so great.
The excitement of the move allowed me out of the room for about 1 minute, but that’s been it. However, there are very few hours in the day that I’m alone. There is the good company of my husband who bikes across Manhattan from the Miracle House, the place he is staying, to be with me for the day. We play games, watch online videos, talk, nap, and encourage each other. We even celebrated his birthday here. A few days later, I had a total surprise visit from my college roommate, Frankie, and herhusband Steve. They live in Virginia so I was completely taken off guard, but they happened to be in Connecticut for a wedding and made a big detour to come see me. That was thrilling! We've been encouraging people to cut out magazine smiles to attach to their mask and this visit officially started the trend.
I’ve also gotten to Skype with my mother-in-law and childhood bestie and “sit in” on dinner/bath routine with my niece and nephew and their parents. These were tremendously helpful escapes.
Last night my parents and sister arrived. We had a brief visit and they came barring all the essentials I had requested – more button downs, lemon drop candies, a biking glove, our mail – the randoms. They will be visiting for the week while my sister has her stem cells collected and to be here through our Day Zero transformation.
The medical team visits are every four hours, all through the night. I’m awoken nearly fully at 5:30am each day for blood to be drawn from my catheter. At 6am comes the earliest morning vitals round and requires me to get out of bed to be weighed.
I see the nurse all throughout the day and get a special daily visit by “the team” of the nurse practitioner and doctor on rotation, which fortunately happens to be Dr. Sauter this week. I see a physical therapist once a week. The dietician and the social worker pop in. I’ve had visits from the Integrative Medicince Department that included a mind-body specialist who coached m on meditating, a reflexologist who massaged my feets, and a music therapist who had a drumming jam session with Craig and me. The nursing assistants ensure that I shower every single day. Someone cleans and disinfects my room each day and changes all of the sheets. Let’s just say there are a lot of people in and out all the time.
Every single member of the team has been exceptional. The staff who work on this floor are all smart, professional, fun, accommodating, and thoughtful. I have no complaints about the care I’ve received here. What they have to do to me to get me through this process is not fun whatsoever, but having kind and competent people as my guides and partners in this makes a tremendous difference. They care for me as if I were their best friend that needed to be nursed to health, not like a “job” they have to attend to.
These first five days leading into transplant have been very difficult. Today, day -1, my day of rest, has been the worst of all as the chemo side effects are starting to catch up. Throughout the week I’ve received Fludarabine and Melphalan chemotherapy, Sacrolimus and Tirolimus immunosuppressants, constant anti-nausea drip, Potassium and Magnesium for nutrition, protonics to coat my stomach; fluid, fluid, and more fluid; Heparin to open my veins Vancomycin, Acyclovair, and antifungual prophylactic antibiotics. I need to shower daily with the surgical scrub Hibicleanse and powder my body’s “folds” with an antifungal prescription powder.
To help with pain of headaches and other ailments I’ve been pumped with morphine and oxycodone. To help with nausea I’m constantly pumped with Zofran and need Ativan at least a couple of times a day to cut the nausea that still comes on top of that. I’ve puked only a couple of times: a solid one my first night though – great way to make an entrance on the floor. I’ve lost all of my taste buds therefore my mouth feels like a have a furry bunny in it all the time: it’s dry and holds an awful taste that permeates anything I attempt to eat, so mostly I don’t.
I pee in a hat. I poop in a hat. I vomit in a bucket. They want to measure, look at and know about it all. My IV tubes are changed every few days and at any sign of a fever or even chills I am cultured from every orifice. Currently there is a question as to whether my Hickman catheter line is infected, as the skin surrounding it is tender and red and it’s now oozing pus. Having that drained today was one of the least fun things I’ve ever had done to me.
My blood counts have just about bottomed out, as hoped. My white blood cell count today is 0.2 so there should be plenty of room for Kristen’s donor cells. The dropping of my red blood cells leaves me very weak and the low platelet counts leaves me susceptible to bleeding. I will soon be low enough to require transfusions.
So that’s really what’s been keeping me busy. When I’m not being prodded I have a little time for games and reading. Mostly, I do a lot of day dreaming about my future out of here and beyond all of this. So far this process has been a tremendous test of my strength and endurance in every way.
The other day I saw two delicate red balloons on long white strings float right past my 8th floor window. The evening before moving into the hospital, I received a box of 1,000 hand-folded pristine, delicate and beautiful origami paper cranes from an absolute stranger who has followed my story and wanted me to have this most healing and ancient symbol of healing. I take these as signs of the peace and strength and hope that I am looking for.
My younger sister, Kristen, spent today in the donor room hooked up to the apheresis machine for four hours with her arms straightened out by the IV needles within them. One side pulled her blood out, the machine caught it in the middle and filtered out the stem cells, and the other arm received the cells back into it. She’s expectedly tired and in some pain from the five days of Neupogen shots she had to endure, but she went through this all without complaint. And she did well: the lab received many more stem cells than they even need. Her part is now done and I’m so relieved that she made it through safely, though I never doubted her. I love her more than ever for this incredible gift she has given me.
Tomorrow is the big day – transplant day. My body will open fully and let my sister’s stem cells flow in and get acquainted with what needs to be done in there. Of course I am apprehensive and anxious but I know that there is so much love and hope in those cells. We all hope that this selfless act my sister endured for me and the immunotherapy it will provide will be the final key to a cure.