Hello again all! It’s Jess, back in front of the keyboard. Momma did so well with her updates, I’m grateful that she helped document the process. I’m not sure what
good drugs I was on I was thinking that I was going to be able to do it, I just had no energy to update you properly myself.
Last she posted, I was out of the hospital for the second time, and going to the BMT clinic on Oct 5th.
October 6th, 2016 (Day +13) to October 16, 2016 (Day +23)
A belated happy thanksgiving to you all! I have so much to be thankful for, not least of which are all the wonderful, thoughtful people in my life. This experience has been made tolerable by the lovely surprises and great support I have received in recent days. Thank you. Thank you. Thank you.
Both Daddio, and the Sister were in town for thanksgiving and it was awesome to see them. Daddio even came to the BMT clinic one day so that he could see where I was spending so.much.time.
Fall is in full swing, and we’ve had some beautiful autumn days. Momma has done her best to encourage me to get some fresh air every day, and I’ve even been out for a couple of short strolls.
Over the last 10 days, my time has been spent between home and the BMT clinic. I’m pleased to say that I haven’t had another admission to hospital since our last post.
As you may recall, I started out by having an appointment every day at the BMT clinic (day hospital), then it became every other day. On October 9th, I was officially “discharged” from the hospital. This means that, I will no longer have appointments on 5 West, as part of the day hospital, and if I need to be readmitted I have to go through the emergency department like everyone else – they are no longer holding a bed for me. It also means I will start to be seen once a week in the BMT clinic in Module L, at the hospital. (Much more like a doctor’s office than a hospital room.)
On October 11th, I had my first “post-transplant” appointment in Module L. Nothing significant to report. They do blood work at these clinics but we don’t have to wait around for the results anymore, and we were told that they would call if there was something urgent. So, no news, is good news.
The song lyrics for how I’ve been feeling these last 10 days are: “Sometimes you’re the windshield, sometimes you’re the bug.” I have good days, and bad. Some days I have energy, some days I sleep most of the day. I’ve been struggling with nausea, but the doctor changed my anti-emetics from “as needed”to several times a day. It seems that that has taken the edge off of the nausea. The doctors assure us that all of this is normal.
Another common side effect – poor appetite. Although I’m not nauseous, my appetite is pretty much nonexistent. I’m mostly eating soup, jello, toast, and crackers and cheese. Everything tastes strange, and NOT in a good way. I wouldn’t call it metallic so much as bitter.
One other side effect that I’ll mention that’s popped up, is hyper-pigmentation. Busulfan causes this, and it’s under my arms, and in the creases where my body meets my legs. We were told it would happen, and that it would resolve itself.