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.

Published by

Heather

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.

5 thoughts on “Cytopenia”

  1. Wow and yippee-to those of us loving you from afar -this sounds like great news and you are on track. Perhaps your birthday will be a celebration of no longer being watched. Love and hugs from L&L

    Liked by 1 person

  2. So glad you are making such great progress and that you are able to be home doing it. You have been climbing a mountain and soon your will reach the summit and be able to relax a bit. Take good care. Sending lots of well wishes and prayers for your recovery.
    Ann Marie

    Liked by 1 person

  3. I love you, and I love all the people and all the technology that is helping you stay alive.
    It’s all kind of amazing.
    That triple lumen central venous catheter thing reminds me of medals on a soldier’s chest.
    Carry on, my friend.
    Hope I can see you soon.

    Liked by 1 person

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