SCT Postcard From the Edge: Surviving My 5-Day Hospital Stay For Myeloma
BY LIZZY SMITH Is there anything more emotionally or physically taxing than a stem cell transplant (SCT)? I know there are many of us myeloma warriors out there who must answer "no." SCTs are intense and hard, emotionally and physically. And I knew this because I did tandem transplants in 2012. Honestly, I was so sick and overwhelmed with my diagnosis, life, treatment and how awful I was feeling to remember big chunks of it. Like, literally, there are months I hardly remember anything at all. My mom, dad or children will mention something and I look at them blankly. Really? That happened? Are you sure? And since healing from those SCTs, I've embraced life in Big Huge Ways. I made a real decision to do so, and I think I live my values almost every day. Which means that when my doctors mentioned another SCT, I immediately declined. How about never? Clinical trials. Let's try this drug and that drug. And had one of the worked, had we been more "on top" of things, would this have been necessary? Ah, the million dollar question. But I must make decisions on the here and now, not the "what ifs." So I heeded their advice and I agreed to start round one of D-PACE. I already have plenty of cells harvested so at least I can skip that part. But my insurance company required that I be hospitalized for induction therapy. Huh? Last time I did this, it was all outpatient. I carried that four-day "chemo in a bag" in a very cute bag that I splurged on and off I went-- shopping at Costco, going to movies, dropping my children off at school. Did I feel really horrible during D-PACE? Now that I look back on it, I think I did. I have slight memories of walking around Target feeling like I was floating when, in fact, my feet were very much on the ground. And I remember that everything smelled of this sweet chemo-smelling "thing" and the smell of my own skin made me want to gag. I took lots of baths and lotions and, still, I could not get rid of that "smell." So, regardless of any of that, I agreed to check into the hospital for five days to start induction. I went in optimistic and happy. I went skydiving the day prior, I packed up cute clothes. And I checked in. And after five-days, I have to be honest, for the first time in my entire life, I think I ended up with a good case of Post Traumatic Stress Disorder from sitting confined in a hospital when I didn't feel all that bad. The mental and emotional fatigue is something that, at least to my memory, I have never felt before. Sheer panic. Like "I'm going to be sick, or my heart is going to pop out of my skin, or I need to get UNHOOKED from this blinking bulky IV cart RIGHT THIS SECOND." I didn't have a total panic attack in the hospital, but I almost did. On Friday night very late, they unhooked me of everything and I just needed to wait for morning to arrive so my dad could spring me from the hospital. Now I have to be fair-- if you're going to be stuck in a cancer hospital, Huntsman Cancer Hospital in Salt Lake City kind of rocks. It is beautiful. There are spectacular views. The room service menu is extensive and good. And the nurses are amazing. But it's still a confined space. When I finally got home, I was the only person there for about an hour. I had total silence in my home. Home. I was HOME. It was quiet, clean, bright, refreshing and peaceful. And then that night as I went to bed, I had full on panic. I woke up several times throughout the night in a cold sweat, or a hot sweat, thinking I was back in a hospital room. The blue digits on the alarm clock were the same color as the colors in my hospital room. Get me out of here, I wanted to scream. I thought I'd be sick. I talked myself to calmness. Yoga breathing. Prayer. It was ok. I was safe. It's been a few days now. Here are new observations or take-away's up to this point:
- If you go into the hospital, I highly recommend you ditch their awful tiny little inadequate blankets that sometimes felt they were going to choke me. Bring a nice fluffy blanket or comforter that you love.
- Bring something that smells not too sweet. The indescribable "sweet smell" of chemo was almost more than I could take at times. Thank goodness for peppermint oil that I could run under my nose for a respite.
- I checked into the hospital weighing in at 137 pounds. Within 48-hours, I had gained 10-pounds. Impossible. It was water weight and I felt like I was carrying around three whole watermelons in my tummy. And I looked like I had triplets in there, too. The good news is that it took me two days of getting unhooked from the chemo and fluids and IVs to lose 13 pounds. I spent a lot of time in the bathroom draining and it felt fantastic.
- I cannot believe how scary I'm eating these days. Like I really try to eat super healthy and organic, with almost no meat and loads of fish. I gave up completely. These days, I have absolutely no control but I plan on giving myself until Friday before I force my diet to come to its senses. At this point, I'm surviving Hell, I get to do whatever I want. And what I crave most is (I can't believe I'm even typing this), Fritos and dip. Seriously, I never eat chips, ever, and never Fritos. And on Day 1 of my return home from the hospital, I ate an entire bag and I didn't even feel disgusting when I was done.
- I hate coffee at the moment. I bought some the other day and literally found myself in the bathroom throwing it up. But I have discovered a tea that I am obsessed with at Beans & Brew. Today, I felt pretty crappy. I dropped my children off at school, got my tea, came home and sat in a chair and watched The Price Is Right while sipping tea. It was quiet and peaceful. And I slept. I have a very hard time allowing myself time to recover and nap. This time, I am TAKING IT ALL, no excuses.
- I am far weaker than I remember from the first time I did this. When I got home, I needed help propping myself off the toilet (sorry, TMI). I had to grab for life the counter. How did I have not enough stamina for even that, I wondered. I am utterly baffled by this one. On day 1 back from the hospital, I went downstairs to put some clothes away and coming back up those stairs felt like I had huge heavy weights on my feet. I felt so... off kilter. Heavy.
- I really need to be careful at night. I woke up in the middle of the night and I literally could not walk straight. I almost fell twice. I am so klutzy. I need to be ultra careful.
- Some smells still make me want to cry. My mother, bless her heart, did all the laundry for my children while I was in the hospital. I opened up the bag she sent over and the sweet smell of laundry that I usually love almost sent me over the edge.
- Mornings are hard! Now this one I remember from my first round of SCTs on diagnosis. Mornings are super tough on me. It takes me hours to feel "right." I am doing a big work-around on this. I take baths at night instead, I lay out my meds the night before for morning so I don't need to use my brain so much, and I allow myself time to get up for a few minutes, sit down, get up, sit down again. It is a long process and I just have to take it a step at a time. It is such a relief when I have my children dropped off at school and I can just be done.
- And the PTSD seems to be waning a bit. I expect tomorrow to be a bit better, and the next day better than that. And when all this sordidness is done, I am celebrating BIG with a fabulous trip. I don't know where that will be yet but I'm endlessly looking at pictures and dreaming. Planning. Because I deserve a Very Big Huge Treat.
And to my fellow myeloma warriors, may we continue working on finding those advancements, new treatments, and a cure. They are to be found in clinical trials, very exciting trials that are opened right now and they are awaiting us. Because some day, we just have to put SCT and chemo to rest for good. On Sunday, I took my daughters to the movies. It was a near empty theater, I kept my fingers out of my mouth, and I used loads of hand sanitizer. It felt good to sit, do something normal, spend time with the girls, and be reminded that life is still out there, away from needles and meds and labs and doctors appointments. Those mental moments are so critically important to us. Embrace them as often as you can. Peace and love, Lizzy