Medieval maps would show dragons or serpents in the far unreached and unexplored territories as a warning of danger and the unknown. There, in calligraphic splendor would be the words “Here Be Dragons.” We now know in our journey, we’re about to meet some dragons.
This week we met with the head of the transplant team and, while the wizards of oncology and stem cell transplants have to confer one more time, it looks like July 1st we take our first steps into the unknown this time around. We’ve had the comfort of our previous experiences to be with us on this journey so far. Now we step, like Indiana Jones in the Last Crusade, across the abyss with a leap of faith.
While there’s a whole lotta paperwork to read through and a tonnage more to sign off on, a few tests and appointments to make, we now turn our faith completely over to the transplant team. They have already contacted the insurance company and ensured coverage for this journey. They will set up a CT/PET scan to track our progress to date. Hospitalizations will be arranged by them as well. They have taken over much of the responsibilities that we’ve had on our shoulders so far. While that support is certainly welcome, we now give up control. Let go and let God. May the Force be with us.
The meeting itself was an extreme case of information overload. Once home, we wade through a bunch of gobbledygook, notes scribbled as fast as possible, and untangle our understanding of the process as we try to find a comfort zone in the unfamiliar. In the office though, once the nurse was done going through the basics and stepped out to take a call, I looked at Rich and said “I need a timeline! I need a timeline!!!” Our first impression was that we were going to be jumping into the stem cell process much sooner than we thought…. Wait a minute! No RICE therapy? No outpatient chemo? What happened to the three more cycles? WE NEED A TIMELINE! WHERE IS OUR TIMELINE???
I’m sure we both had some excellent deer in the headlights impressions going on. The stem cell doctor came in and we realized the nurse was giving us just the info on the stem cell procedures – the doctor discussed our next steps… yes, RICE for two cycles, two weeks apart each were her recommendation before we begin the stem cell process. This had been discussed with us at our last meeting with our oncologist. Our nemesis Prednisone… the maker of mood swings, water weight, bloating and exhausting joint pain… will be a thing of the past. BuhBye… and hey, on your way… go check out those dragons over there!
RICE… Rituximab, Ifosfamide, Carboplatin, and Etoposide. It will be administered over a period of three days. The first day will be as an outpatient at Monter Cancer Center as our RCHOP has been. Days two and three will be as an inpatient admittance. Some of the infusions are for a full 24 hours hence the overnight hospital stay. In between cycles, blood tests will be done to monitor levels on days 5,7,9 and 10 post chemo. Neulasta, the bearer of bone pain relieved by Claritin, will get doubled up to create as many stem cells as possible. Our friends Benedryl, Ativan and Emend will follow us into the unknown and keep our patient comfortable. They have been invaluable so far. We’re glad to hear they’ll not be left behind.
During this time is when we’ll have the new CT/PET scan. We look forward to seeing the progress that’s been made on eradicating our unwelcome guest! Radioactive voodoo drinks and injections… makes us nostalgic for our early days in this journey. We’ll be seeing our lead lined boxes in our lead lined rooms once more! Biohazards galore!
And then, the harvest. This year, harvest time comes early. For us, once the two RICE cycles are completed and the Neulasta administered in the double dose, the harvesting begins. If all goes well, it should be before the end of the summer. Stem cells will be collected from Rich’s blood in sessions lasting 4-6 hours. Two to four sessions are the norm to gather enough cells for reintroduction during the autologous (ie: self donated) transplant. Enough being two to five million per kilogram of patient weight. These cells will be frozen awaiting use. But the wait is not long… within a week of the final harvest, Rich will be admitted into the hospital. The harvesting itself is a familiar one to Rich. For decades before his first NHL diagnosis he donated blood as well as platelets during apheresis. At least 20 gallons over the years… after his diagnosis he was no longer a candidate. For the first time in ten years, he’ll be an apheresis donor again. Only now he’s also the recipient.
In addition to the medi-port he already has, he’ll now get a triple lumen catheter installed in his chest for quick access for blood work, chemo infusions, transplant infusion, nutrient replenishment and the expected blood and platelet transfusions during the recovery process. Our One of Nine Borg is to be further assimilated.
His first week in the hospital will be a seven day double dose intensive chemo session of yet another protocol of Cyclophosphamide (CPA), Carmastine (BCNU), and Etoposide (CBV). This will ensure the eradication of the cancer cells by actually altering their DNA. At the same time, it will also kill the bone marrow. The idea is to take Rich literally to the brink… face to face with those dragons and sea serpents. A couple of days to gather strength and, as the documentation inelegantly states, “excrete the chemotherapy agents” and then the transplant. Whatever cancer is in those transplanted stem cells is apparently insignificant and will die off. They’re not enough to bring our nemesis back. What a marvelous time we live in that these protocols exist! Our grandfathers both fought in World War I… during the introduction of mustard gas as a biological weapon. That same poison will now be one of the beneficial chemo drugs that will be used to kill off the NHL cells.
The day of the transplant is day zero… A new birthday. June 20th we celebrated Rich’s 60th birthday. Will our Gemini now become a Leo?!
From that point forward, the job is simply to recover… bring those cell counts to where they need to be. Simple as it sounds, the first two weeks after the transplant will be the low point… mega-flu-like symptoms and largest risk for infection. As the counts rise and the stem cells begin to replicate, those symptoms will begin to alleviate. Medications will be on hand… anti-nausea, anti-flu, antiviral, antifungal, antibacterial, antibiotic, anti-whatever you can think of. The doctors and nurses will have one job, to keep our Borg healthy and comfortable. All told, we expect a month in the hospital. We rejoice that visitors will be allowed, wifi will be available and entertainment on tv and the internet will pass the time. Only our beloved grandchildren will need to keep their distance. Video chats will need to be set up so we don’t go into Boober/Bean withdrawal!!!
During that month, changes will happen at home: De-cluttering and top to bottom in-depth cleaning to create as sterile an environment that a home can have. House plants will be relegated to the outside garden as even their soil harbors bacteria. And the cleaning will continue non-stop as Rich continues to recover. Kitchen Clorox cleaned every day. Bathrooms Clorox cleaned every use. Windows kept closed. Food will need to be modified as well. No fresh fruits that can’t be peeled (and no, Rich, peeled grapes don’t count). No fresh veggies… frozen and canned only. No raw fish, no rare meat. No take-out. No leftovers. Which means we’re gonna need a lot of creativity and, before hospitalization, definitely some sushi.
Two months post-transplant before any crowds. Four months post-transplant before any restaurant visits. The first 100 days post-transplant are the most crucial for avoiding infection. It will take one to two years at minimum to have close to a full immune system. Inoculations and vaccines will need to be re-administered after his first birthday.
Whew! When it’s all laid out like this, it seems daunting. But as with any journey, you take it all step by step. So our first step is to initial, sign, and date the mound of paperwork we’re given to document our consent to go forward. Like agreeing to drink radioactive voodoo, it’s counter-intuitive. But we always remember… if a small Hobbit can bring down a dragon, think what our Borg can do!
Use What Exists 