Limping to the Goal Line

O.k., perhaps that is a little over dramatic. However, these last few weeks have not been great. Mostly manifesting itself in my blood counts being too high or too low, depending.

Calcium too high (headaches, and possible confusion), solution = zometa and fluids. Possible cause, myeloma attacking my bones causing calcium to leach into my blood stream.

Low hemoglobin, aka anemia. I am apparently sensitive to anemia, throughout Christmas and afterwards the slightest activity (moving things in the refrigerator, washing my face in the shower, etc.) caused me to be terribly out of breath, solution = blood transfusion. Causes are either from the treatment I’ve been getting (but am done now until right before I go inpatient at Dana Farber/Brigham and Women’s Hospital) or from the multiple myeloma.

Very low platelets.

Low ANC, again very low, causes me to be immunosuppressed. They have been giving me Neupogen shots and this week added an antibiotic to be on the safe side.

Bone pain, this is definitely the myeloma. I am most comfortable standing or sitting up very straight in a chair, which makes resting a bit difficult. I did finally ask for something for the pain and they prescribed oxycodone (5 mg, take one or two every 6 hours). I feel like they hardly work, therefore I haven only tried them a couple of times. For now I am sticking with Tylenol.

Some nausea (helped by anti-nausea meds), and some serious fatigue (short cat naps help). I actually took some hours off of work a week ago, I simply passed out on the couch in the morning and then again in the afternoon. This is the first time throughout this entire illness (starting in 2014) that I have needed some hours off of work.

I am also trying to plan and get my act together for being away from home for 4 weeks (at least). I booked the hotels (the pharmaceutical sponsor is paying – yay!). Started planning some food/eats with Alison and Lisa. Thinking about packing clothes and everything else I will need. Continuing the count down – as of this evening I have 6 more work days and 2 weekend days to be fully prepared.

I’ve also put together my calendar:

Now, that most of the planning is done, it’s just thinking about the unknown of what the medical procedure will be like.

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.

13 thoughts on “Limping to the Goal Line”

  1. Heather, we have never met but your sharing has a very positive influence on me. As a survivor of Lymphomia, having gone thru treatments like radiation, chemo, steroids, biopsies, and the like I sympathize with your battle. As a fellow human I believe we are all connected and somehow am sending good vibrations and healing. Every time you post it reminds me how blessed I am and to send healing prayers your way. Please keep fighting the food fight. Namaste!

    Like

  2. Hello Heather and Happy New Year! I do hope it will become a happier and healthier year for you….. and more great years after this one! You are an inspiration to me, and I can imagine also to your family. What battles you have all faced… you are a strong woman who knows how to face her opponent and I know you will continue to do that as you go through your amazing calendar of challenges! Bob and I think of you and your family often and we send you love and strength and admiration. Fight on! Sending you hugs and love and truckloads of positive healing energy!!

    Like

  3. Let’s go five minutes at a time. We’ll rest alot. This is going to be a different kind of road trip. But I’m still bringing my tiny harmonica… : )

    Like

  4. Your determination and plain guts inspire me. I’ll never complain again. Your details worry me, but fortunately you are dealing with them as you always do. I love you. Stay safe and rest as best you can.

    Like

  5. Heather, you are an amazing and courageous woman (not to mention organized as well)!! Keep fighting the good fight one day at a time my friend. I’m sending you positive vibes and love every day. xoxo

    Like

  6. Heather, Sending lots of love and strength vibes. Your resilience and positive attitude are inspiring. Miss you. Hugs

    Like

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