"There’s an end to every storm. Once all the trees have been uprooted. Once all the houses have been ripped apart. The wind will hush. The clouds will part. The rain will stop. The sky will clear in an instant and only then, in those quiet moments after the storm, do we learn who was strong enough to survive it."
-from Grey's Anatomy
On the night of Friday, June 14, I was sitting around with my family, newly bald as of Wednesday, with freshly painted nails and toes, enjoying one of two last nights in my house and recovering from getting my catheter placed early in the day. I was sore, but happy, and even though I was still a little intimidated, I ultimately felt strong and ready.
Then I got a phone call around 8:30 p.m. that I knew couldn't be good. I recognized it as an Ann Arbor number -- not the hospital, but I knew I'd seen and answered it before. So I picked up and it was my nurse coordinator.
Something happened with my donor.
It was a major event. We assume health, but it could've been an accident or a death in the family, but I assume health, because she's completely ruled out for me.
And after that I stopped hearing everything she was saying. This was my perfect match. This was my start at a new life. I got myself all ready. Our kitchen is a mess filled with things we've purchased or gotten washed and cleaned and ready for the hospital. How could this happen?
I was crushed.
I managed to pull myself together to listen and ask some questions. My nurse coordinator told me that my back-up donor was being urgently worked up as an options and it could be as little as two weeks, maybe less, before we could get back onto the calendar. My new donor is 22 years old and also a female. She is O+, so my blood type will change from A+. This doesn't necessarily make a difference. She's also a perfect match and hopefully, God willing, she'll be ready to go.
It's my hope that she'll get cleared by this Tuesday, June 18 and be ready to donate by next Monday, June 24 or Tuesday, June 25. If she can, then I can be admitted to the hospital on Wednesday, June 19. I'd start chemo on Thursday, June 20 and send the lab sampling to the Busulfan Kinetics lab in time to be reviewed and get results Friday, June 21, and in time to adjust my last doses of Busulfan on Saturday, June 22, and Sunday, June 23. Then I could either have a day of rest and start on Tuesday, June 24 or with no break, I'd get it Monday, June 24. No one has told me this schedule, but it's my personal math and personal hope.
In the meantime, I've been incredibly nervous and depressed. With the exception of the time I spent in the cancer center on Saturday getting my line redressed and flushed, I've spent a lot of time sleeping. It's been the only way for me to manage my anxiety about this.
I've been searching for silver linings. One of my good friends, a fellow CML BMT patient, told me I'm lucky we found out when we did and not once we'd already gotten to the hospital and started chemo. I could've ended up dead. I get more time with my family now and more time with my dogs, which is always a bright side of things for me.
If we can't get BMT done in the next 10 days to two weeks, I'll have to have my line pulled to prevent infection and have it re-put in later.
I also haven't been sleeping in my own bed since the catheter placement. Let me take you on a brief journey of getting my line put in.
I had sedation, but I was not knocked out and I do remember a sizable amount of it. If I do have to have this whole thing done again, I'm asking for a slightly heavier hand on the meds. I did get locals, I couldn't feel the pain of them cutting me open, and with the exception of one suture, I didn't feel them sewing in the external portion of the line. But there is a LOT of pulling that you just feel no matter what because your whole body isn't numbed. I was VERY sore within my neck and shoulder regions. It hurt to move my head or lean in the right direction. The incision didn't hurt itself. It's Sunday now and most of the pain from the pulling -- which felt like if you worked out really hard and hadn't done it in awhile, as my friend put it -- has gone away. My incision itself is a little sensitive now and I'm not at all used to having these leads hang down. I'm busty, so they get caught between my boobs, and they pull a little, so I'm going to have to out what to do about that. But I'll figure it out -- I'll do anything it takes to not have to have the line taken out and put in again.
So if you're a prayer, or a good thoughts kind of person, or whatever you do spiritually, send one out for my new donor, that things would move expeditiously and that she would be very healthy and able and willing. Since she already sent confirmatory labs, I hope that she was willing from the start, but things can change. Also, we need her to be able and willing to do this fast.
Thank you in advance!
xo,
Heather
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