BACKGROUND: Here’s the basic info about my procedure. I was diagnosed with AML NMP1 positive, FLT3 negative, subtype M4 at age 34. My initial chemo worked and I was in remission for about 19 months. I also had AML found in my cerebral spinal fluid and therefore had intrathecal chemo (and a permanent fancy pump in my scalp) and cranial radiation. I relapsed and again was given chemo to get me into remission before proceeding with a MUD allo (matched unrelated donor allogeneic) transplant. I did have both acute and chronic GVHD. Still dealing with the chronic.
I like to tackle things from worst to best. You know...clean toilets before sinks before mirrors. Eat your veggies before the steak. You get the idea. So lets start with the ugly. These are the absolute worst parts of the stem cell transplant process and after effects. So again, if you don’t want to hear about my girly parts or poop, avert your eyes until the next post.
Listed no particular order...they all are pretty awful.
1) It burns to pee, and sit, and stand, and walk. When I was given cytoxin, one of the conditioning chemos, it is so strong that it can and will burn the inside of your bladder. Therefore, they make you have a catheter so that the cytoxin doesn’t sit in your bladder at all. Thankfully, I only had to have the torture device,er, I mean catheter for a little over 48 hours. Remind me to tell you about the fun chemo that turns your pee blue. That was a chemo used to get me into remission after relapse. Those were the days...here’s a picture of that blue chemo.
2) The cytoxin also made everything hurt. My skin burned, my mouth burned, I had horrible headaches and I generally was in pain while the chemo was being administered for 3 hours for 2 days.
3) Uncontrollable bowels. When you get all the paperwork for a SCT (stem cell transplant), they give you a list of things to bring. On that list is Depends. Bah. I’m 36, why would I, a youngish lady, need old people diapers? OMGosh. Bring the Depends. Or be prepared to explain to the people you pass in the hallway why you have poop running down your legs. There is no control. The chemo somehow manages to make life extra miserable by giving you delightful diarrhea that has no warning and you’re seriously too weak to contract your sphincter to keep it in. No joke. Also, as a fun parting prize...this lasts for some time post transplant. Like months. I was horrified my first week at the hotel (isolation...explained later) when I got up to use the bathroom but found I couldn’t make it. When I returned home 3 months later, I was spending most of the morning in the bathroom because I couldn’t leave it. I learned to accept wearing Depends out in public and sadly, learned how to discreetly carry extra undies, Depends, and wipes with me wherever I went. I’m now an expert at changing and cleaning my lower half in all sorts of public restrooms. I can also tell you were most any public restroom is in NW Indiana! And, my poor children who were too young to leave outside the bathroom alone, had to witness this process too many times. Thank God they understood and didn’t give me much grief about it. To this day, 21 months post transplant, I still have to use the bathroom often and my boys get annoyed. However, I do have bowel control back finally.
4)My vagina is a ziplock bag. You know how you can read about all the side effects of something and say “that’s not going to happen to me”. Yeah. Me too. Vaginal GVHD started innocent enough. Dryness. Mild discomfort. Some narrowing. Oh but wait...that’s just the beginning. I went for a Pap smear a month ago and my gynecologist couldn’ get to my cervix because my upper third of my vaginal canal was stuck together. Like a ziplock back. Well, that’s just great. As if it wasn’t bad enough that the chemo put me into menopause, now I can’t get the IUD out! But why would you need an IUD if you’re in menopause? Well, because this isn’t your run of the mill menopaus. Oh no, this is chemo induced. This is special. This menopause can reverse itself at anytime it feels appropriate. So the IUD stayed in because the thought of relapsing while pregnant and having to choose between my child’s life and my own is too terrifying. So no more kids for me. I wanted one more. Maybe. But when they hung the initial bag of chemo back in 2014, the nurse said “you know this will likely sterilize you right?” “Have they given you fertility counseling?”. Uh...no? Nobody told me that at all. But kinda late now huh? Anways, I digress. Back to my ziplock. So now here I am with a hooha that’s 3 inches shorter than it should be with an IUD trapped inside. Not to mention the slim chance that my uterus at some point needs to vacate a load of menstration and will not have any way to do so. So next week I start a fun routine of estrogen and vaginal dilator use. Fun times.
5)My hair on my head never returned. I guess it was just too much chemo. So I sadly have accepted that wigs are my friend. My eye brows and eyelashes returned but not my head. I guess I should be thankful for what I got!
6) I was away from home from April 10th through July 30th. That’s a tremendously long time to be away from your husband, children (ages 2, 4, 6 at the time), and your pets. When you have a allo SCT, you have to be in isolation for 100 days post transplant. This meant that because I had small children, I couldn’t go home. I also had to be within 30 miles of Loyola and my home was 68 miles away. Loyola has contracts with several local long term stay hotels that follow specific guidelines for transplant patients. I stayed at the Residence Inn in Lombard, IL. I grew up in Lombard, so it will the closest I could get to “home”.
That’s enough for tonight. My children need me to say goodnight. I’m thankful to be here to do so. I’ll get to the “bad” in the net post. Good night!
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