Sorry this is a bit delayed. Lots to catch up on. First is that I am still in the hospital. Unfortunately the timeline that I understood was wishful thinking on my part :-) (Can’t blame me for being optimistic/naïve, right? Lol
Upon admission last week I was thinking this was going to be a few day hospitalization and a quick discharge back home. Unfortunately I’ve had some complications that have meant that they need to monitor me more closely and this means a longer stay…so anticipated discharge in early-mid next week now. So, all in all, probably going to end up being a full 2 weeks in the hospital…quite a blow to our little family life since it was sort of unexpected and definitely taking longer than I had initially thought/hoped. Oh well. I am treating this hospitalization as a “medical spa” and really focusing on reconnecting body/mind as well as getting projects done on the computer :) Today I started the project of organizing all of the pictures that we have taken in the past year (4 different phones, 2 ipads, the digital camera, etc) and got them all downloaded, edited and uploaded into Costco so I can start getting prints made and finally begin Scotty’s baby scrapbook. It was SO much fun to walk down memory lane today as I went through labor & deliver pictures, his first trip home, first bath at home, first Halloween/costume, Christmas pictures, pictures from earlier this year when I was first diagnosed and went through chemo, the transplant, and the summer with my mom visiting. Scotty is such a blessing and it was very sentimental and surprising cathartic to look through the past year and give myself credit for everything that I’ve been through (and come out even stronger). I am one lucky girl to be married to such an amazing man, have such a beautiful son, and a family/friend support network that is beyond caring/supportive! Thank you from the bottom of my heart! :-)
Here is the latest update as far as my physical health. They had to place a PICC line (a catheter in my arm) to deliver the IV medications. Unfortunately, one of the risks with the PICC line is that you can get a blood clot. Well, sure enough, on Friday evening I noticed that my armpit area was feeling sore. I almost didn’t mention it to my nurse because I just thought it was sore from them jamming a catheter into my vein that runs into my heart. I am so glad I mentioned it though (they make ya a little hypervigilant around here and report every minor symptom, even if you think its nothing). The doc ordered an ultrasound ASAP and within 2 hrs they confirmed that I indeed had a clot. So…I am now on blood thinning injections 2x per day to help mitigate the risk. They are hoping that this treatment will be enough to allow my body create its own “work around” and eventually (over the course of the next 4-6 months) they hope that my body will just kind of reabsorb the clot. They are also monitoring me extremely closely to make sure that the clot doesn’t break loose and cause a pulmonary embolism (VERY slight chance, but they are on top of it by monitoring my oxygen saturation, listening to my lungs and taking all my vitals every 4 hrs.
My doc has me on the “mega dose” of systemic steroid and has added 2 additional steroids that specificially target the lower intestine (which is where the active GVHD is occurring). One of the new steroids is a pill and the other one is an oil form that “slips” through the stomach & small intestine and then kind of “coats” the inside of your large intestine and helps it heal that way. Totally fascinating, but SO gross to shoot a mg of what is essentially castor oil into your mouth and swallow it. Luckily, through trial and error, I have come up with a system that works (swig of apple juice, shoot the medicine and chase with more apple juice.). :-)
I have responded well to the steroids so far (GI bleeding is resolved, I haven’t had any pain/cramping for 4 days, and my stool volume is coming down.) That last part is probably TMI…but the docs keep stressing how important it is for this to happen, so I am choosing to share my “progress” in that area since its “kind of a big deal” J lol Sorry. John and I were joking that after having a baby last year and then with this recent GVHD stuff, poop has become a regular topic in our conversations…sad but true. NOT ever something that I EVER IN MY WILDEST dreams thought would be a major topic of conversation in my daily life, marriage, etc. Funny how “real” life gets sometimes. Really helping me learn to just be authentic and accept that his is the “new normal”…it is what it is. :-)
Side effects from all the steroids are that I am feeling hypomanic (not sleeping well) but they are giving me meds to help with that too. The steroids also affect my blood glucose, so I have had to start monitoring my blood glucose before each meal, and they have to do sliding scale insulin injections to keep that under control. The steroids at this high of a dose also suck all the calcium out of your bones, so they had an endocrinologist come in and consult on my bone health. She is recommending a medication (1 time infusion) to protect my bones from any further damage…so that will be good. Additionally, the steroids cause muscle deterioration, so I am being very vigilant about doing my PT and making sure I walk 2 miles worth of laps around the unit each day. It’s a full time job to take my meds, do my PT & exercise, keep track of my diet, and monitor all of my symptoms! I am documenting everything for my own records just so I can keep it all straight and advocate for myself. :-) Gotta keep this brain engaged somehow! Lol
Good news is that since I am already here in the hospital, Dr. Nash was able to get Kaiser to approve my bone marrow biopsy with sedation with less hassle. I am scheduled from my 6 month BMBX and aspiration on Friday @ 2pm right here in my room. Pretty sweet set up that they are coming “bedside” to my room, and it will save us $150 outpatient procedure copay, as well as the fact that John won’t have to take a day off and drive me downtown for an outpatient procedure.
The last health update is that Dr. Nash has been increasing my immunosuppressant medication (Tacrolimus) and he added an additional immunosuppressant that should help. Side effect to this is that I will be even further immunosuppressed and essentially I am back to square one (almost like when I was just first out of transplant). I have to go back to “super secret code Clorox” at the house and I will need to be extremely careful about being in public again (wearing a mask, no public places during busy times, etc). Kind of a bummer since I had just started the process of volunteering and feeling connected professionally again. Just gotta stay on top of things and set my clock back again…and really take care of myself again. Definitely a reality check that this is a “marathon” and not the 5k that I had kinda of started treating it like recently.
One of the sort of interesting things that the doc explained to me today is that I essentially have a “baby/virgin” gut right now as my intestines heal. This means that I am on a SUPER DUPER restrictive diet because they need to see how/if I am absorbing nutrients and allow the cells to regenerate and start functioning. Essentially I am allowed to have grilled chicken breast, hard boiled eggs, applesauce, bananas, pretzels, white rice, green beans and lactaid milk. No dairy, whole grains or anything that they usually say is healthy & what you SHOULD actually eat! Lol Its been kind of a mind warp to switch my thinking around since I had been working so diligently on eating healthy & trying to lose weight. I will stay on this diet for the forseeable future and just like you do with an infant, we will introduce foods one by one, very slowly as we monitor my reactions. It’s a trip to eat the same thing everyday, very “Groundhog Day”ish. I find myself getting ready to order my meals and thinking that I need to look at the menu, but really I already know and should just be able to tell them “send me my usual” :-) lol We will definitely be buying chicken and rice in bulk from Costco for the next few months. Hahaha.
Okay, this is getting really long. Just wanted to get all the info out there for everyone. I am in very good spirits and the team of docs/nurses/chaplain/case managers are taking EXCELLENT care of me. I am extremely hopeful framing the experience in a way that this is just like a “speeding ticket” and I have to slow down and be cautious again.
Thanks for all of the continued support/love and prayers. I feel them and appreciate them more than you will ever know! :-)
Love, Chellie
Thinking of you everyday!
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