When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own. I expected to go through chemotherapy, have regular follow-up care, and move on. Done. I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the permanent remission rate for aggressively treated APL was upwards of %90. I’d be fine. My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate. There was a treatment that could really fix me. Not everyone with cancer is that fortunate.
I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home). Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable). I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues. Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right. But I’m alive. That’s good enough. I can figure out how to deal with the rest.
I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread). A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there. While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head. I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist. A lot of me was scoped, scanned, scraped, or squashed. Fortunately, everything came out OK. That was a huge relief. I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different. It has its own life, even when it’s not there.
I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’. It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist. As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER, I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed). I’m lucky, and I do realize that. And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.
I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor. I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed. That was a mind-blower. I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was. I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath). I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.
So maybe I’ve gotten a little scared. I might be a bit late in finally getting spooked, but it is what it is. At the time, I was more focused on just getting through it. Now, I’ve got the luxury of having things being stable enough (for my normal abnormal self) to look at what had gone on. I hope and pray that I’m in that %90+ that will never have a relapse. I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times. As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter. And I have absolutely no control over that.
I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it. I see a fairly long future, even with the assorted medical issues I’ve got going on. It’s not like I’m spending my days thinking I’ve got the cancer back again. But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back? Some may see that as fatalistic. For me, it’s just life after aggressive leukemia and the many months of chemotherapy. I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.