Coffee, Peanut Butter, Wine, Buffs and the Ocean

My stay at Dana Farber/Brigham & Women’s ended Sunday night with what felt like a miracle.  Not unlike the story of the Chanukah oil/menorah, only in reverse. The last bag of chemotherapy was scheduled to end at 11:00 p.m. At almost 8:30 I decided to start packing up my belongings, just to pass the time. As I was dragging my IV pole around the room, I glanced at the furthest most tube and saw that it was no longer dripping – the chem bag (covered by a colored sleeve to keep it protected from the light) was done all except for what was in the last piece of tubing! We were home right around midnight – total score! (The nurses jokingly teased that I had changed the settings to get out sooner.)

Since getting home I have felt pretty well, nothing terrible, some nausea, some fatigue, mostly just not feeling like myself. Case in point, I have absolutely no desire to have, what most people consider my three staples: coffee, peanut butter and wine,  It is the strangest thing.

On Monday, worried that my hair would start falling out in clumps at any moment (I am unclear as to the actual timing), I went to an outdoorsy store and bought a buff, just so I would have something on my head (see video here on how to wear a buff) in case I suddenly looked ridiculous. I chose a nice neutral shade, a cream that would go with everything. I put it on, and actually thought it looked pretty good, that is until I realized that the nice neutral cream color, absent my dark curls sticking out, will just look like a skull cap, precisely the look I am trying to avoid! (I exchanged it yesterday for a deep purple with fuchsia print.)

In other news, I fainted for the first time in my life on Tuesday. I was getting my first blood draw from my PICC line. It took a bit of time and the nurse was flushing the lines several times and I was feeling nauseous from the smell of the heparin. I told the nurse I was feeling nauseous and lightheaded. She told me to take slow deep breaths, which I did. And then I told her I was feeling really lightheaded. And then, that I thought I was going to throw up. She held a pan in front of me and told me to take slow deep breaths and look at her,  I felt terrible and all I could think was, “That’s it?  I’m in a hospital, with a nurse and all you got is ‘slow deep breaths’ and ‘keep looking at me’!?!? Really??” The next thing I knew I was dreaming, a rather pleasant dream (although I could not recall the details and my sister advises that likely it was a hallucination as opposed to a dream). And then I woke to my name being called and very surprised that I was not home snoozing in bed.  Apparently, I was passed out for about two minutes. But, some IV fluids, anti-nausea meds and a ride home I was fine.

I am continuing to wrap my head around the details, appointments, restrictions, etc. of my upcoming stem cell transplant (SCT),  I spoke to the SCT coordinator today about several things, but I was keen to find out if she thought I would be able to go on my annual vacation to Hampton Bays, NY in August.  And….she did not think that would be a problem!  And not only that but she added that I would be able to swim in the ocean, which is probably my favorite thing to do in the world.

Life is good.  It really is.

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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 “Coffee, Peanut Butter, Wine, Buffs and the Ocean”

  1. I had to look up what a ‘buff’ is. So many options… A very versatile piece of cloth! Also… it’s funny what you said about your go-tos… coffee, peanut butter, wine… I knew I was pregnant for the first time with Grace when I suddenly couldn’t drink coffee. Not a single drop. Just for the first couple of months. I knew some kind of radical shift had occurred in my body. And I used to faint getting my blood drawn most every time. First the nausea, then the sweat, then the tunnel vision, then the static… I never had a pleasant hallucination, though. Just lights out. I used to tell the nurses “give me somewhere to lean.” It would only last a few seconds, though. That picture of you guys leaping in the ocean is awesome. Whoever took it — great timing!

    Liked by 1 person

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