Update on What’s Flowing Through My Veins

I have been going to Smilow every Monday, Wednesday, and Friday since I came home from Boston on February 12th. I started off needing blood (low hemoglobin) and platelet transfusions almost every single time and have always needed something and often both.

In the last week and a half or so things have been looking up:

  • March 5th: only blood
  • March 8: only platelets
  • March 10: only blood
  • March 12: only platelets
  • March 15: NOTHING!
  • March 17: NOTHING!

So, today Alfredo at Smilow and Liz at Dana Farber decided that I only need to get my blood checked two days a week. I will go in every Tuesday (because I need my central line bandage changed weekly) and I will get my blood tested locally on Thursday and only go in on Friday if I need anything!

There is light at the end of the tunnel!

My ANC with the assistance of the Neupogen shots had gotten all the way up to 2.8! So they took me off of the injections. But, Monday it was 0.8 (which means I am at high risk for contracting infections) and today it was 0.7. Alfredo and Liz decided that I wold give myself the Neupogen injections on days that my count falls below 1.0 (and that should hold “for a bit”).

The next goal: my platelets and hemoglobin continue to improve so I can have the central line removed!

30-Day Follow-Up at Dana Farber

Last week, on Thursday (Feb. 25) Sarah and I left East Haven bright and early for a series of tests and appointments at Dana Farber.

First stop was blood work and then off to my bone marrow biopsy under conscious sedation. Multiple bone marrow biopsies over a few months made me decide to forego being brave and just laying there crying on the table in pain, it’s conscious sedation for me! Because I had the conscious sedation Sarah was allowed to accompany the entire day rather than sitting in her car (COVID rules).

We then were scheduled to meet with Tina Flaherty (the APRN who works with Dr. Munshi) and also Liz, the research nurse (she has been my go to person – she gets shit done!). When we were roomed, suddenly it was myself, Sarah, Liz, Tina, Dr. Munshi and another oncologist (studying with Dr. Munshi to learn about CAR-T, I am not sure if “studying” is the correct term, but it describes the relationship). It was a very full exam room for a few minutes! Tina just wanted to say Hi! because Dr. Munshi had her switch patients so he could see me. The appointment went well, everything was positive, myeloma numbers are all going in the right direction, they are very happy with my progress. The cytopenia will resolve (eventually). Dr. Munshi noted that I looked good and wanted to know if I felt better – which I do.

At the end of the visit Sarah was wise enough to ask about when I could drive (per the protocol I had another month to go). Dr. Munshi said, “That’s silly, you can drive.” Yay!

We ate some lunch and then it was off to the dreaded MRI, which I had been told would be 2 hours. Tina approved 1 mg of Ativan (even though I had had the conscious sedation). When they brought me back, the tech said “So, you’re here for the marathon.” And I said, “Ugh, 2 hours.” He replied, “Not 2 hours! An hour and 15 or 20.” Such a relief. It was still not that “easy”. After 30 minutes I had to ask to remove the mask (COVID). And I needed to ask them towards the end to take the blanket off. But, it’s done!

Sarah and I were getting into the car to leave at around 6 pm and I remembered that the nurse practitioner who did my bone marrow biopsy has said that if it bleeds more than the size of a quarter we should turn around and come right back (she assumed we were leaving at that moment). I had Sarah look at it, and I actually don’t recall her precise words, it was more how she said it. But, suffice it to say, it was bleeding, a lot.

We went straight back into the building from the garage and up to the myeloma floor, explained the situation, and they paged Dr. Munshi and told us to wait in the waiting area. I didn’t think I should sit down, and reached back and put my hand on the outside of my jeans and my hand came back covered in blood. So, no, we were not going to sit down. Shortly after that they called the charge nurse and I was pretty quickly taken back to the infusion area.

I was indeed bleeding profusely (the clinical term). Again, the order and details are a little foggy, but the nurse had Sarah at one point hold something over the area while she got another nurse to help her remove the existing bandage and put a new one on – it needed 4 hands. I did get weak in the knees (I was still standing), broke out into a cold sweat, and got nauseous, but just for a few minutes, sitting down and some water resolved that.

Dr. Munshi came into the room and said, “You don’t look so good now.” Thanks, Dr. Munshi! They ordered a bag of platelets, and when that didn’t work (still bleeding profusely) they ordered another bag. If that hadn’t worked I was going to be heading to the Emergency Department – but it worked! And we were heading home!

I am starting to see some signs of life with my blood counts. On Monday I did not need a blood transfusion (but did Wednesday and today, Friday). I have needed platelets each visit, but my numbers are in the teens instead of the single digits (FYI – the standard range for platelets is 140-440). And in big news, my ANC hit 0.4 for the first time since the CAR-T therapy!! (You might recall that they wanted them at 0.5 to discharge me from the hospital, the standard range starts at 1.0.) I am very excited – light at the end of the tunnel, perhaps?

In orthopedic news, my lower legs have been very tight ever since I got home from the hospital (apparently 24 days in a room is not good for you in that way). I have been taking walks when the weather allows. On one of these walks I felt a stabbing pain in the middle of my calf. I was somewhat sure it was my achilles, but after a visit with Dr. Tomak (my orthopedic surgeon) it is just a pulled/strained calf muscle. Just requires, heat, rest, and massage to heal. It’s already feeling better.

Other than my legs being very stiff, my biggest physical complaint is back pain, and with good reason. The MRI revealed compression fractures at T7 and L3. Taking a wait and see approach for now. Liz said that if one is asymptomatic they don’t do anything, otherwise there is a minimally invasive procedure called a balloon kyphoplasty. The MRI showed other bone lesions from the myeloma, but those should heal in time.