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:
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
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:
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
about the author
Lizzy Smith
Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.
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