Sunday, January 3, 2016

Back (sort-of) from Stem Cell Transplant Hell (so help me, God, I will NEVER do this again)

I have completed my stem cell transplant and engrafted. My engraftment has been awful, although feel as if I'm sort of climbing out of the abyss.

I received high dose melphalin on a Tuesday. I should not have felt its effects for several days but I felt it the day-of. I knew then that this was going to be a bad experience. My poor body is just done with this intense treatment and is fighting it every step of the way. "LEAVE ME ALONE," it is screaming. And I (and my doctors) are not heeding that warning. On the day of my treatment, I chomped on ice for an hour and then went home, tired and feeling very "wrong" and twitchy. I went to bed early after taking two Ambien and an Ativan (yikes) to calm me down.

William (my angel and husband) took my kids to school the next day while I headed back to clinic for my stem cell appointment and had all my luggage and Christmas gifts in my car. My mom and dad (my other two angels) joined me. I got my stem cells (anti-climatic) and we drove to our hotel and checked in. I decorated for Christmas and went to bed.

On Friday, the girls were done with school and they joined us in Salt Lake. Already, I was feeling awful-- fatigued and developing chest pains. It's like I had acid reflux but could not get any of it out. I knew mucositis was setting in-- a painful inflammation and ulceration of the mucous membranes lining the digestive tract.

By Monday night, I was in terrible pain. I was barely able to swallow, my mouth was coated in mucus, and I felt like someone was stabbing me in the chest. I could not swallow my pills. Off to clinic I went and soon enough, I was readmitted into the hospital. I wanted to SCREAM. Myeloma took away my birthday, Thanksgiving, and now Christmas? But I needed help. I was severely dehydrated and thirsty. I could sip water and fruit punch but that was it. The pain in my chest made me cry. I was given my medications via IV. I was hooked to a morphine pump (which took 7 attempts and huge bruising to get that IV into a vein in my arm), and I was given IV fluids. For five days, I ate not one morsel of food. My weight plummeted. My doctors begged me to eat. How the hell was I supposed to eat when I couldn't even swallow?

Finally on Christmas day, I begged (and won) my exit from the hospital. I went home throwing up in a bag and crawled into bed and fell asleep. Merry Christmas! The only good news is that my daughters had a wonderful day-- thanks to my sister-in-law who had them spend the night. They baked cookies, watched movies, ate popcorn and Santa came to their house. The next morning they opened all their gifts. I spent too much, as usual, but after asking both girls their number one favorite gift, they both said the same thing: Their flight/trip to San Diego to visit their sister, Kalie, and Nicole. They leave in two weeks. I am so grateful that they are maintaining close relationships with their step sisters even if their dad has pulled a disappearing act (don't even get me started on this one).

So here I am today, one week post engraftment and, while doing a bit better each day, it's been tough. I am weak. I tire easily. I've struggle with terrible diarrhea (finally gone!). I throw up at least once per day. I eat, but maybe 500-700 calories max per day. I am too thin. I can't even stomach getting on a scale to see what I weigh now. My scalp itches like hell because my hair is growing back. I can't tell if I am losing my eyelashes but if I'm not, they are so short and mini. Thank goodness I have Morgan, my 15 year old daughter, here to work her makeup magic.

....So, it's time to start putting "me" back together.

Last night I started off with a 90 minute pedicure. My feet feel great at least. Next week, if I have enough eyelashes, I'm getting eyelashes extensions. If they've all fallen out by then, this will obviously need to wait. I am getting a Roman soak bath and back facial. Also a one hour massage and one hour facial. I'm getting microdermabrasion, too. I am spending four days at the spa and you know what? I deserve it. My skin is dry and miserable. I am miserable. So one step at a time, putting "me" back together.

And I'll give myself a few more days of just slowly getting up and doing something different-- go out to lunch, go for a drive... whatever, anything. And then I'll start on our exercise bike-- 15 minutes if that's all I can do. I am so weak, did I say that already? I need to start slowly building up strength and stamina. Since it's cold and we have snow on the ground, I am grateful that we have a home gym, with a bike, elyptical machine, treadmill, free weights and a sauna. This will give me all the tools I need to get back to my normal snarky, high energy (most of the time) self.

Someone asked me recently why I did another transplant instead of the new medications and therapies. DON'T EVEN GET ME STARTED. I begged for elotuzumab. I begged for clinical trials. Nothing came to fruition and then I was told things were critical and I needed to act NOW. Was this worth it? No. This has been the worse experience of my entire life. I should have been at U Penn doing their Car T Cell therapy trial but since I was in transplant, I'm not eligible. I should have been on elotuzumab, which would have given me time. I should not be struggling to recover from a horrible transplant. I should not have lost all my hair and be back in a wig again. But it's done and I must move forward. I just need to get strong and well, and that's what I'll focus on. And be grateful that I am alive.

Cheers,

Lizzy