On Wednesday, I met with my oncologist who had some great news. There’s so much of it, I’m going to have to just bullet it out:
- I’ve gained about 5-7 pounds since I left the hospital 4 days earlier – eating my own food on my own terms on my own schedule is doing good for me.
- My numbers are still hovering and trending in the right areas and I was even able to stray a little from the neutropenic diet last night and had a fresh, beefsteak tomato (with mozzarella and olive oil). This doesn’t mean full off of the diet, but slowly and in moderation.
- The doctor doesn’t feel it’s necessary for me to see her for another 10 days! This is just a good indication that my numbers are good and that I’m taking care of myself.
- My cholesterol – usually not run as part of the suite of tests that’s done on my blood – turns out to be surprisingly, extremely low: 47!
Here’s the best part: there are no leukemia blasts in my blood! Even though my bone marrow showed 60% leukemia in the last biopsy, there have been no blasts in my blood since the last round of chemo. This was something the oncologist told me she thought the hospital would have told me – but they didn’t. It’s a bit unusual to have no leukemia blasts in the blood but have such a high percentage of leukemia show up in the marrow. However, it is not a dire situation.
When I go back to the doctor later this month, we will do another bone marrow biopsy. It could be that my blood keeps recovering and my bone marrow is still ill. And there are many ways to treat such circumstances. For one thing, I may not need a third round of induction chemotherapy, I may be able to go to consolidation chemotherapy, which is a process that reinforces the production of good blood cells. I don’t know yet how it works, but you can bet I’ll be looking into that. This, of course, is a hopeful scenario – an ideal one even – but not one that is out of the question.
And, yes, a bone marrow transplant will still be necessary, but it is not of the same dire urgency as before. My oncologist wants me to spend as much time as possible out of the hospital building up my strength, and I think returning to work and taking on some increased responsibilities will be good, plus more exercise. I’m hoping for a sunny path to consolidation and later to transplant, but I suddenly don’t feel the scourge of a death shroud surrounding me. I feel like we’re on the right path and I’m happy that my body is responding as well as it is.
I have to say, though, that during the check-out procedure, I’ve come to learn the costs of health care. And it frightens me to think that so many Americans in the middle of the income spectrum would be caught with such stratospheric bills for catastrophic care: just one of my anti-biotics costs $2,400 for a 30-day supply. My co-pay was $35 on that. But what would a person do without health care? Aetna, my health insurance company, sent me an evaluation of hospital charges that are covered and what I owe. Tens of thousands of dollars in charges and I owe $600-some-odd dollars. I can’t imagine what a less well-off family would do.
And in some ways this frightens me worse than my own diagnosis. Maybe this is a cause for me to pursue when I’m strong enough. I don’t know. But truly, when I was checking out from the doctor’s office yesterday, the enormity of the costs came over me and I got very choked up.
But – this is not a political blog … I’ll have other resources for that.
On to the rest of the update: Alan and Sheera have been here and they’ve been wonderful giving me hand setting up the home office with all the various new furniture and supplies, and helping with the shopping, the cooking, the cleaning, the laundry. They’re away now and the apartment seems very empty, but they have such a presence though in my heart – they’re not that far away.
My mom’s here now staying with me. Close friends are coming in this weekend for some serious geek play and catch-up, and hopefully some more apartment set-up (I just bought some furniture today that will need to get set up and another piece moved) so this is all coming together nicely.
I’m finding being home to be extremely cathartic, especially being around my family, and finally doing some cooking and good eating. The stairs to my loft are still a bit of a challenge, but I take them slowly and try not to go up and down too often during the day. I did a lot of walking today and must remember to get out more: while my apartment is big and there’s plenty of walking space, it’s hard-wood floors, and walking on the concrete outside is a very different set of skills. But it was good, although I know I pushed myself a little too far today.
Friday, I’m planning on attending a meeting for work, in person! I can’t wait. I’m looking forward to seeing a lot of people, and hope to start to ease back in to taking on more of my former responsibilities. I miss the challenge so I’m looking forward to seeing what I can reasonable take on for now.
So for current correspondence, please use my home address. Email me if you need it.
With continued thanks for your on-going love, strength and support, sending everyone my very best, too,
Filed under: AML, Cancer, General update, Leukemia, M1 | 12 Comments »