No signs of side effects. They gave me platelets yesterday (count was down to 8). I am feeling okay, except for the bone pain.
They administer the neurological test 4-5 times a day. Part of the test is writing a sentence. Any sentence. Whatever comes to mind. I’ve done the weather, Kensley, etc.
But tonight when they woke me up to check my vitals they administered the test. Write a sentence, hmmmm… this is what I came up with: “The rain in Spain stays mainly in the plain.”
After the nurse left I racked my brain to remember where that came from: My Fair Lady. What?? I passed the test but I think I may be going a little crazy! Nine nights in a hospital with no visitors allowed.
But seriously, I’m fine. What will I come up with next?
Everything looks good to get the CAR-T cells today. White blood count is sufficiently dismal to make room for the CAR-T cells to move in and proliferate. And I’m getting some extra fluid for my slightly low blood pressure.
I passed my baseline neurological test with flying colors (now I sound like our former president). I asked them if I started to not do as well would I notice or would still think I was doing fine. They said I wouldn’t notice and they would still tell me I was doing great! I found this comforting. They also said neurotoxicity in myeloma patients getting CAR-T is not very common (but possible).
The cells are currently being thawed in a water bath and I should get them early this afternoon. It is somewhat of a non-event, but the attending did say congratulations on his way out 🍾
The nurse asked me last night if I wanted my cells blessed. This took me aback. And then I received some beautiful words from some friends and know that I am already blessed.
“Hope sees the invisible, feels the intangible and achieves the impossible”. Anonymous
May each cell be the hope we can’t see but believe will be the cure.
I bless you, and all your cells; I bless the cells you are about to receive; I bless the minds and spirits, and brains and bodies, and spirits of every person, and every energetic and vibrational presence involved in this process.
Sitting in the inpatient waiting area for my room to be cleaned. So close…
The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.
They anticipate starting the chemo tomorrow afternoon.
It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.
First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.
From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.
Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).
All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.
It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.
I am literally losing track of time. So rather than a detailed timeline I’m just going to explain where we’re at and why.
I am currently in a holding pattern in Boston waiting on an application for expanded access application from the FDA. On Friday the sponsor determined that my platelets did not meet the criteria for the clinical trial (required:50; mine:15). However, they did approve me for compassionate use pending the FDA/IRB approval.
The vast team at Dana Farber including my oncologist, Dr. Munshi, and Dr. Jacob Laubach, principal investigator on the trial have written a protocol for the use of the CAR-T cell therapies already engineered for me.
Timing: The application was sent late afternoon on Friday, now it’s the weekend, and Tuesday is MLK national holiday.
On Friday I received fluids, a unit of blood, and a unit of platelets. Today was an off day. Tomorrow I go for lab work and possibly more blood products. Sunday is also an off day.
Assuming I get approval from the FDA on Tuesday I will be admitted and get the lymphodepletion chemotherapy inpatient as there is concern that my low counts will go even lower.
Tuesday: drove to Boston while fasting since the morning. Had bone marrow biopsy with conscious sedation. Highly recommend the conscious sedation for this procedure.
Wednesday: fasted in the morning for a PET scan. In the waiting room for the PET scan received a call from the research nurse that neither the study nor my insurance would pay for the PET. A few hours later, they called and said insurance would pay for a full body MRI that afternoon. Later that afternoon they canceled the MRI and got the approval from the study for the PET.
Thursday (tomorrow): I have my line placed at 12:00 and the PET scan at 3:30. No food for me! I have to fast from 6 am to 6 pm.
The schedule has been changing minute by minute since I arrived. Hard to complain, they’re doing the best they can, and having several people calling to keep me updated.
All that said, the working title for this post was SNAFU – Situation Normal: All Fucked Up.
O.k., perhaps that is a little over dramatic. However, these last few weeks have not been great. Mostly manifesting itself in my blood counts being too high or too low, depending.
Calcium too high (headaches, and possible confusion), solution = zometa and fluids. Possible cause, myeloma attacking my bones causing calcium to leach into my blood stream.
Low hemoglobin, aka anemia. I am apparently sensitive to anemia, throughout Christmas and afterwards the slightest activity (moving things in the refrigerator, washing my face in the shower, etc.) caused me to be terribly out of breath, solution = blood transfusion. Causes are either from the treatment I’ve been getting (but am done now until right before I go inpatient at Dana Farber/Brigham and Women’s Hospital) or from the multiple myeloma.
Very low platelets.
Low ANC, again very low, causes me to be immunosuppressed. They have been giving me Neupogen shots and this week added an antibiotic to be on the safe side.
Bone pain, this is definitely the myeloma. I am most comfortable standing or sitting up very straight in a chair, which makes resting a bit difficult. I did finally ask for something for the pain and they prescribed oxycodone (5 mg, take one or two every 6 hours). I feel like they hardly work, therefore I haven only tried them a couple of times. For now I am sticking with Tylenol.
Some nausea (helped by anti-nausea meds), and some serious fatigue (short cat naps help). I actually took some hours off of work a week ago, I simply passed out on the couch in the morning and then again in the afternoon. This is the first time throughout this entire illness (starting in 2014) that I have needed some hours off of work.
I am also trying to plan and get my act together for being away from home for 4 weeks (at least). I booked the hotels (the pharmaceutical sponsor is paying – yay!). Started planning some food/eats with Alison and Lisa. Thinking about packing clothes and everything else I will need. Continuing the count down – as of this evening I have 6 more work days and 2 weekend days to be fully prepared.
I’ve also put together my calendar:
Now, that most of the planning is done, it’s just thinking about the unknown of what the medical procedure will be like.