I can’t believe I’m back. This blood cancer thing is like the NY Mob; Just when I thought I was out, they pull me back in!
Our story thus far: In Aug 2018 I was diagnosed with Double Hit Stage 4 Lymphoma. It was a shock, and a fearful surprise, and we rallied our troops (you readers & friends among the most vital) and we beat it, I thought.
Fast forward to this past Sept/Oct when I began feeling very tired, more exhausted than I thought I should, and my blood work numbers were’t great. I got my blood drawn for numbers every 3 months, visited my oncologist, and had a pet scan every 6 months.
In January the bloodwork looked even worse, and I was worried enough myself that I offered to my oncologist to cancel the vacation I’d planned, and prepaid, for myself and Kathleen to go to Hawaii. 2018/19 sucked so bad that I felt I deserved a little joy, I’d never been to Hawaii, and I got a good deal on the trip.
Dr N, my oncologist, said I should go to Hawaii. So I did. I felt miserable most of the time, hardly able to walk to breakfast, but it was beautiful and I could see the ocean (and whales!) from my room. I’m still kind of pissed about that, because looking at the numbers I feel that he should at least have requested a pet scan and bone marrow biopsy before I left – there would have been time.
When I returned I DID have those two tests, the results were terrible. I saw the bloodwork on my health providers online patient portal, and it scared me. I contacted Dr. N, and asked if he wanted to see me, “today or tomorrow?” and was messaged back by his nurse that he’d see me on the 21st of Feb, as we’d scheduled. A full week away. At this point I couldn’t walk to the bathroom without stopping for a break on the way, I was weak and exhausted.
The next day I received a call from a different doctor at my hospital, he called me to tell me that he thought my numbers and test results indicated AML Leukemia. He asked me to get to St. Johns immediately and they’d give me a transfusion.
I was there in a half hour. Good thing I rushed [/sarcasm]
I sat in the ER for 4.5 hours, then they admitted me, still no transfusion. The next day; still no transfusion. Dr Shanks had a talk with me and told me St. John’s wasn’t the hospital for me. He transferred me to UM Hospital, and they’ve been pretty stellar in the 3 days I’ve been here.
They stared me on my chemo regime (1 day on, 1 day off for 7 days, then 21 days recovering) and are discussing a stem cell transplant after my chemo is done, if the outcome of my chemo is good.
If it’s not, then there’s probably no need to consider a stem cell transplant.
So I’m booked into this place until the end of March, not to leave the building, and rarely to leave my room. Everyone wears a mask when they visit me, to keep me safe, and a PICC line was inserted yesterday so I can get my chemo and do the CONSTANT blood draws with as little pain on my part as possible — Huzzah!
I’ve been updating folks on Facebook, I’ll try to keep this blog up AND FB as much as I can. I know folks get news on either feed, but we like what we’re most used to!
Everyone has been SO kind to me, to the family, and we’re very grateful. Andy’s just started a new job today with Americorp / Conservation Corp (so ironic since I had to back out of my Americorp job in September when I began feeling so low!) It’s work I think Andy will love; lots of canoeing, clearing streams and rivers, and just general convserving; it’s what she studied for at Earlham for years!
We do have worries (aside from health). We’re in the middle of putting our house on the market, cross your fingers for me that we can get that wrapped up, and the house sold soon so I can pay off the mortgage I had to take out to purchase our NEW home where I can do all of my living on one story.
Another worry are the pets. They’ve wonderful, but they need looking after because I can’t be at home, and Andy & Evan will be spending days away training for their new job. I’ve put a DONATE button on the upper right sidebar of this blog, if you would care to toss us $15 or $50 to help us offset the boarding and pet day care fees, it would be GREATLY appreciated!
Please click on this link to donate any amount to help us cover Jasper & the kitty’s boarding fees while I’m in the hospital for AML Leukemia treatments. Thank you!