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.

Published by


I never thought I’d be writing a blog, and certainly not one that is all about me, and yet, here I am. For me life has always been interesting, not mundane, not always exciting per se, but hardly ever the norm. When I say “It’s always something…” I don’t hear it as my life is a mess, it;s always something. It’s more of life is challenging and evolving and messy and inspiring and wondrous, it’s always something. I grew up in suburbia, buy my grandfather was the head of the Communist Party in the U.S. I was raised keeping that a secret, so that was something. I am tall, always have been, really tall (6’1″), I was taller than every human being in my elementary school when I was in 6th grade, that is still something. My parents divorced in my teens. I got a full basketball scholarship to Duke University. I married my high school basketball coach, 18 years my senior. I raised a stepson. I had two amazing kids of my own. We had a multicultural household, secular christian (I guess that’s what I would call it, you know Santa and the Easter Bunny) and Judaism, I used to say if it was a holiday – we celebrated it! We were uber involved in our community, mostly through youth athletics, coaching, managing and spectating. Our kids grew up, I started a photography business on the side (I hope to share some photos here) and we planned to travel a bit together, went to Portugal for our 25th anniversary and then my husband was diagnosed with stage 4 prostate cancer, initially they gave him 5 years, but he only survived for a little over two. I was going to say lived, but really, it was more like surviving. That, indeed, was something. I became a widow at 49. It was the worst thing that ever happened to me. But, then it was something in another way. I relearned who I was. You don’t realize how much of you becomes a combination of you and another person in a relationship. And not in a bad way, it is essential, and you don’t lose yourself, you just evolve. And I found myself suddenly alone, and learning about myself and who I had become over the years, what was just me, and what was part of who we were together. Which in retrospect, was probably hardest on those around me who had gotten used to the old me, or never even knew the original me. A year later I found love again. Sold my home of 31 years and moved closer to work. I became more fit, ate more healthfully and was amazed that I could be happy, truly happy, in the wake, no not wake, but the shadow of such profound grief. And that is truly something, something amazing and unexpected. And then, through some routine blood work in April 2014, and a visit to a hematologist and bone marrow biopsy in May, I was diagnosed with multiple myeloma. And so, yes, for me right now it’s multiple myeloma, but that is not all, there are still highs and joys, and the mundane and the rest, but something like cancer does cast a pretty long shadow.

2 thoughts on “30-Day Follow-Up at Dana Farber”

  1. That’s quite an impressive update that showcases how resilient you really are ,Heather. Glad to hear the results are in your favor and that this is temporary. Keep up the good work and be kind to yourself. Cherish all the little things like the birds singing 🙂 Take good care and a flight to Paris is only $500…something to look forward to.
    Ann Marie

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s