Made of “Good Stuff”

Last week I had an appointment with my neurologist, because you know, I don’t go to enough doctor’s appointments!  Actually, I had to go because the stem cell harvesting process gives some people migraines, which I do get. Typically I handle my migraines with a combination of tylenol and advil. However I am currently not allowed to take advil, so off to the neurologist I went to get a prescription for migraine medicine, just in case. (Turns out I did not need it, I got a few headaches but no migraines.)

I have sen my neurologist on and off for over 25 years, she comes highly recommended from a doctor friend of mine, is Ivy League trained and I have always found her thorough and a very good clinician.  She is a little but, I don’t know, eccentric.

I had not seen her since being diagnosed with multiple myeloma, but she is the one who discovered my olfactory cortex meningioma (see Incidental Findings). So after a long review of my past and more recent medical history, a physical examination, etc. (everything neurologically is fine!). She sits across her desk and looks at me and says, “You know, you look really good.” I reply, “I know, everyone says that – nurses, medical assistants, doctors, specialists, attendings in the hospital, everyone.” She says, “I don’t think you know what they mean. Some people are made of bad stuff and they get sick and they look bad, but you’re sick and you look really good, you’re made of good stuff. I think you’ll be o.k.”

So after a not very technical evaluation, I guess that’s a good thing, I just might be made of good stuff, even though I have bad stuff going on.

My good stuff best be there for me as I approach the coming weeks. I have learned something recently, mostly talking to nurses (nurses are da’ bomb, by the way, so full of great information). The “stem cell transplant” is not actually the treatment for the cancer.  The treatment, to get rid of the cancer cells in my blood is the two days of high dose melphalan. This will “kill” both the bad cells in my blood as well as the good cells, hence the need for the stem cells. The stem cell portion of the treatment is actually called “peripheral stem cell rescue”. The stem cells come in to save the day and get your blood counts back into a normal range.

There are other side effects besides the low blood counts: nausea, vomiting (maybe for longer than the hospital stay), diarrhea, mucositis (sores along the digestive tract), heartburn espohagitis, risk of infection and fever.

This is the schedule:

Saturday, June 13th (afternoon or early evening: Admission to Brigham & Women’s Hospital
Sunday, June 14th (Day -2): First melphalan dose
Monday, June 15th (Day -1): Second melphalan dose
Tuesday, June 16th (Day 0): Stem cells reinfused

And then recovery in the hospital Days +1 through +14.

Days +6 through +10 are likely the days I will feel the worst.

Day +5 neupogen injections start and about a week later my white blood cell counts will start to climb as my stem cells mature.

Day +14 is my potential discharge date (June 30th). And then it is home where “the bulk of my recovery will take place” with diet restrictions for 30 days after discharge and infection control restrictions for 90 days after discharge.

Everyone’s side effects and recovery are different.

Here is to my “good stuff” doing it’s thing!

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.

3 thoughts on “Made of “Good Stuff””

  1. You are good stuff through and through. And I think of your heroic stem cells as valiant first responders, swooping in to rescue your blood and marrow and make it new again. I love those stem cells. I feel a deep affection for them. I saw them being born. (kinda) I think they’re beautiful.

    Liked by 2 people

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