A million details and yet in some ways simplifying

Things are moving along full speed ahead for my stem cell transplant starting the end of this month.

Last week I spent a full day at Dana Farber for tests and “training”. They had already sent me a 3 inch binder full of instructions and materials, a powerpoint, a calendar and the dental package. But it was very informative because they pared it all down and clarified some important items.

First the tests: echo cardiogram, full skeletal survey (xrays, 18 of them), blood draw (19 vials!), pulmonary function test, EKG and my third bone marrow biopsy.  We were scheduled form 7:00 am until 5:00 pm.

The  training session was with the two nurses who are the stem cell transplant coordinators and another one with a social worker. They gave us details about what each step of the process would be like.  As I write this I am realizing I really need to listen to the appointment again (I record most of my appointments on my cell phone – thanks for the tip Laura!). But here are a few of the takeaways:

  • Minka does not need to leave the house when I am discharged from the hospital (the binder said your dog cannot sleep on your bed, and Minka sleeps under the covers!). The nurses clarified that she needs to be groomed, have flea & tick treatment and no face-kissing and I can’t kiss her feet (how did they know I kiss her feet!?!?!).
  • I learned how the neupogen shots I will be giving myself (2 per day) work. They stimulate your bone marrow to produce stem cells. Taking the shots daily for 10 days in a row causes one to produce so many stem cells that they start to sptill out of your bone marrow into your blood stream where they can be collected, I also learned that those overfull bones can be a bit painful.
  • Something I am going to be on (here is where I need to listen to the appointment again!) increases migraines, so I have to make a visit to yet another physician and see my neurologists for some migraine meds  because my current drugs of choice, two tylenol and two advil (thanks Lynn!), will not be available to me as I cannot have any NSAIDS.
  • I was told that I would have to stop drinking alcohol two weeks before the mobilization chemotherapy, and then that that was that day!  One of the nurses gave me that evening to drink my last drink (It could be 4-7 months before I can imbibe again). And I did, well, I had my last few, a little bit of everything, finishing with a Herradura Tequila on the rocks with lime.

herradura

There is more, but now I’ll move on to the schedule. Although I had a copy of the schedule sent to me I could not fully absorb it without the details they gave me. here are the highlights:

May 28: Full day of mobilization chemotherapy at Dana Farber. I will go home that night and plan in going to work the following day.
June 2: The last day I can physically go to work. After that they do not want me to risk getting sick and my counts will be down. I plan to work from home June 3-5.
June 8: Stem cell harvesting begins in the early morning hours at Dana Farber and will continue for anywhere from 2-5 days until they have harvested the 8 million stem cells they need (enough for two transplants, one for now and one in the bank). Harvesting is done outpatient, but are long boring days of being hooked up to machines. I will get to go home for at least a couple of nights afterwards.June 13: My inpatient stay at Brigham & Women’s starts.
June 14: This is called Day -2, first day of the chemotherapy for the stem cell transplant.
June15: Day -1, second day of chemotherapy.
June 16: DAY 0, I get my stem cells back.

And so on, until Day +14, June 30th, that is my “potential discharge date”.

At home I will have 30 days of food restrictions and 90 days of house restrictions. More details on those to follow.

But a quick touch on the simplifying. It is oddly freeing to not be able to make any plans, have no place to go, not need any new clothes, no trips to even consider planning.  Just treatment and healing for 4 months. I go through my inbox and delete all the sale emails, all the Groupons and Living Social deals (I won’t be able to go to restaurants), the Broadway Box offers, the Travelocity sales – delete, delete, delete.

I am counting down the days left that I have to dress for work (7!).

And I have download two different meditation apps to my phone – that I will have time for.

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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.

7 thoughts on “A million details and yet in some ways simplifying”

  2. Heather! Who knew there was another person that also kisses their dog’s feet! ?!?! Sorry about the no doggie kisses. Doggie kisses always make everything feel better. Glad you enjoyed your last cocktails for a while. You can start planning your Fall 2015 drink. Thanks for the updates. Always sending you positive energy! I also am your standby person for bathroom and kitchen cleaning. 🙂
    All my best to you. Denise

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