Month: February 2021

Cytopenia

It has been wonderful being home, after being away for a month and a total of 24 days in the hospital (24 days!!!).

I have had some very exciting news from Dana Farber. My free light chains (one of many myeloma markers) have completely normalized. My heavy lightchains have gone down by lalmost half and my M-Spike is also down by almost half.

Lisa, Erica, and Kirsten “watched” me this week while Scot worked. Next week (my last week that I am required to be watched) Erica and Sarah are on duty. Sarah will take me to my Dana Farber visit on Thursday (bone marrow biopsy, blood work, EKG, and 2 MRI’s because insurance is denying the PET scan again).

I’ve been feeling pretty well. My legs have been sore, I think from laying in a hospital bed for all that time. The only remaining bone pain seems to be my lower back. I had aggressive lesions at L1 and L5. I get tired and nap every afternoon.

When I am not at home being watched I am at Smilow (3 days a week) getting blood work and transfusions as needed. This is because of my lingering cytopenia. Here is some information about cytopenia from Healthline:

Cytopenia

Cytopenia occurs when one or more of your blood cell types is lower than it should be.

Your blood consists of three main parts. Red blood cells, also called erythrocytes, carry oxygen and nutrients around your body. White blood cells, or leukocytes, fight infection and battle unhealthy bacteria. Platelets are essential for clotting. If any of these elements are below typical levels, you may have cytopenia.

Types

Several types of cytopenia exist. Each type is determined by what part of your blood is low or decreased.

  • Anemia occurs when your red blood cells are low.
  • Leukopenia is a low level of white blood cells.
  • Thrombocytopenia is a deficiency of platelets.
  • Pancytopenia is a deficiency of all three parts of the blood.

The symptoms of cytopenia depend on which type of the condition you have. They can also depend on the underlying problem or condition that’s causing the low blood cell counts.

Symptoms

Symptoms of anemia include:

  • fatigue
  • weakness
  • shortness of breath
  • poor concentration
  • dizziness or feeling lightheaded
  • cold hands and feet

Symptoms of leukopenia include:

  • frequent infections
  • fever

Symptoms of thrombocytopenia include:

  • bleeding and bruising easily
  • difficulty with stopping bleeding
  • internal bleeding

My hemoglobin held from my transfusion at the hospital last Friday, until this Friday. My platelets did not fair as well. They were 24 last Sunday, 11 on Wednesday (I received a transfusion of platelets) and 10 on Friday (received more platelets). My ANC (absolute neutrophil count – what they follow for the leukopenia) has been ready at 200 even as I give myself Neupogen shots every day.

I did some research and found a study with this chart showing how long it takes CAR-T patients to recover from low blood counts.

The research nurse at Dana Farber threw out 2 months as a time frame. We’ll see.

What it means for my day-to-day is that I have to flush my trigger-lumen central line every day, give myself the shot of Neupogen and go to Smilow 3 days a week. If I need a transfusion the visit can be 4-6 hours.

Trying to be patient, but you know that’s not exactly my forte!

Let me also take an opportunity (again) to thank everyone who has reached out, sent food, babysat me, sent other gifts and treats. I am so blessed to be loved and cared for by so many. Everyone’s generosity has been mind blowing.

I’m Coming Home

I’m wearing jeans, socks and shoes – street clothes – yay!! Pick up time is 3:00, if things work out a rad earlier with the hospital and Scot’s arrival here (still no one can come in) I might bust out a little earlier.

I’ll be self-administering Grannix injections and flushing my 3 lines daily. Plus some Smilow visits for transfusions.

Fortunately, they are letting me go home and not to a hotel here in Boston. I will need caregivers on days that Scot is at work. Thankfully, Lisa and Erica are able to be with me (with a few back ups just in case). Then, Lisa and I will return to Boston for my first follow up tests on the 25th. (And maybe line removal??)

Crazy cat photo credit: Hope Conway

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The photo above is “y” I haven’t updated the blog, I apologize for the lapse.

Since I arrived here at Brigham and Women’s (Dana Farber’s inpatient hospital) I have been asked what every nurse and doctor calls “those silly questions”:

Where are you? Brigham and Women’s
Which city? Boston
Some version of what’s the date? February 2021 (at least)
Can you name 3 simple objects in the room they point to? Flashlight, refrigerator, pen
Can you count backward by 10’s from 100 to 0? 100, 90, 80, 70, 60, 50, 40, 30, 20, 10, 0.
Some doctors ask can you name the days of the week backwards starting with today? Tuesday, Monday, Sunday, Saturday, Friday, Thursday, Wednesday

And the last one is to write a simple sentence. Seems weird but for the most part thinking of what to write was the hardest part. In one midnight testing I wrote: “The rain in Spain stays mainly on the plain.” I laid back down and couldn’t even remember where that came from, then of course, My Fair Lady, Eliza Doolittle – random!

But on Thursday (day +9) I did get a fever and they could see the indicators in my blood that there were a lot of cells were dying. I was finally getting the response to the CAR-T cells I had been hoping for. Both Friday and Saturday were rough days. Below are sentences from Saturday.

Easy to note the loss of neuro capability.

For several days I was in and out, coming and going with the fevers. I totally “lost” at lease one day, maybe two. Examples of what it was like:

  • I could not figure out how to make a call with my iPhone
  • And I wanted it on speaker, also a no go
  • If you did get a call from me there was a day I could only get about 3 words out
  • Texting was very difficult, and I chose not to for several days, that took the longest to come back
  • Exhaustion
  • Difficulty getting out of bed
  • No appetite
  • Napping most of the day

It was just yesterday morning that I quickly sat up on the side of the bed and felt almost totally like myself.

This was all part of the CRS (cytokine release syndrome). CRS is also seen in COVID patients.

I also had TLS (tumor lysis syndrome), this was less something that I felt, but was carefully controlled by the team here. TLS can damage your organs, including the kidneys, heart, and liver.

The really good news, as they kept telling me, was as badly I was feeling my myeloma was getting it worse. They were very impressed by the response, saying they hadn’t seen such a great response. It will be several weeks before I come back for scans, etc.

And yes, I said “come back” – it looks like I will really be going home on Thursday. Today they finally stopped the extra fluid, and other meds, and as of tonight my numbers look great on their own.

I will update if that changes, and plan to update more as I can now.

I hope you can laugh along with me at my neuro toxicity “writings”. When I first laid eyes on it I laughed and laughed.

There must be some others in a trash bin somewhere, perhaps I’ll ask if they save them as part of my record.

Again, this team here both nursing, rounding PAs, PCAs, and the amazing brains on the CAR-T team (including my Mr. Munshi, but many others).

Ground Hog Day

I’ve been in the hospital for 2 weeks today, and received my CAR-T cells one week ago.

Yesterday I asked the attending physician when he thought I could get out and when I could leave Boston for home. He said he would email Dr. Munshi for an answer

Today when they rounded on me he said, “No word on when I can go home.” A nurse mentioned that they wouldn’t let me go home if I was neutropenic (low neutrophil/white blood count) so I asked about that. And he said that would keep me in the hospital, that and side effects. So here we are. Ground Hog Day, again and again.