When I was going through the initial induction chemotherapy after being told I had AML/subtype M-3 or APL (acute promyelocytic leukemia), I just sort of went with the flow. My emotions were blunted- partly from fatigue, and partly from not really having the time to wrap my head around the idea of cancer before chemo started. I was admitted from the ER after having some shortness of breath, and didn’t leave for 6 weeks. I did have some warning that something was wrong, but I didn’t know what until I was admitted to the hospital oncology floor, and the bone marrow biopsy was done. It was a whirlwind of life changing forever. And yet, I’m very lucky.
I’ve written about Jeannie Hayes (the local NBC affiliate anchorwoman) who had 2 days between diagnosis and death. This week a friend of mine had a nephew who was OK on Thanksgiving, felt a little bad over the weekend, and then went from the local ER to being life-flighted to a children’s hospital; he was in a coma by the time he got there…and died the next morning. He was 11 years old. The information I’ve got tells me it is the same thing… APL. Nobody had a chance to even get used to the idea of cancer before they were making funeral arrangements. That’s two families (and their friends) who had their lives changed forever from a disease they barely had time to learn how to pronounce. Two people in the last month who died within 2 days of diagnosis, from the same thing that I survived. It’s shaken me up a bit…. I feel so badly for those families, especially since APL is one of the most curable leukemias if its caught early enough. Mine was caught purely by ‘accident’ with annual diabetic lab work. I had no symptoms telling me to get checked out.
I never spent much time before now looking at how fortunate I really am. It was simply what was happening, and I had to deal with it. But now, I’m gaining a whole different perspective on what very easily could have been the end of me. The average survival from the onset of the disease and death (for those who are undiagnosed/untreated) is about a month. Many people are diagnosed during autopsy. It’s that fast. I didn’t get in to see an oncologist for 2 weeks after that bad lab work, and that was because someone else cancelled- I had originally been put off for over a month. I’d seen my lab work. I knew I needed to get seen, so I had my doc make a call and get me in sooner. Then there was the delay of another week for the bone marrow biopsy. I didn’t make it that long before I went to the ER with breathing problems.
My chemo lasted for a total of 19 months, with the IV stuff in the hospital, IV stuff (arsenic) as an outpatient on telemetry in the oncology unit, and then a year of ATRA (all trans retinoic acid- think jacked up vitamin A), methotrexate, and M6 mercaptopurine- all pills. They have all had effects that have lasted longer than actually taking them. My blood sugars are just now getting back into some decent range (I’ve been off of all chemo for 14 months). My weight is horrible (I gained a lot). And my skin is still kind of weird. BUT, I’ve been in remission since the end of induction. NO relapses. I’ve had a few annoying things (shingles, infected bug bites on my face- or that’s the guess, etc) that delayed things a few times. The muscle and joint pain towards the end of the year on oral meds was pretty brutal, but if it meant I’d survive, I could put up with it. I actually got out of the whole thing fairly unscathed.
Now comes the rest of my life, when any little bump in the road health-wise has my cancer radar spinning like an EF-5 tornado. I’ve got a bunch of other things going on with my health, so I’m never sure when I should pay attention to something, or when it’s just my life as I know it with a little hiccup. Last spring, I had a mammogram, MRI of my brain, colonoscopy, upper endoscopy (EGD), skin exam and biopsy, and yearly (ha !!) girly exams. They all came out fine, for which I’m very thankful. I’m waiting to feel relieved and like I’m really going to be OK for the long haul. The official ‘5-year mark’ doesn’t hit until April of 2015.
And I’m not sure that’s going to make me feel really in the clear. I watched my mom have bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- and then chemo and radiation. The radiation to the brain left her with dementia for most of the 17 years she lived without additional cancer. Every time, they said they ‘got it all’… is that even possible to say with complete certainty? I don’t mean to sound like a total buzz kill for those doing well- not at all. I’m a nurse. I’ve taken care of metastatic cancer patients, and seen them go through hell. I just need to work out in my own head when to have things checked out. And how to feel it’s OK to expect a future (disabled as I was before the leukemia). And when to relax a bit.
I don’t have anything that’s bugging me in a suspicious way- I’ve just never dealt with the cancer to begin with. I put on a smile, drove myself to every one of 50 doses of arsenic, and the weekend Neupogen/Neulasta shots (to boost white cells), showed up for my appointments on my own (even the bone marrow biopsies- drove myself home 20 minutes after they were done), and never really thought about how close I came to being six feet under. I absolutely understand that my prognosis is excellent. My most recent genetic marker studies were perfect. NO sign of the translocation of chromosomes 15 and 17. I’ve been rearranged back into the right genetic sequence (how weird is that? !). I’m a survivor. I’m doing well- I get it… and I understand cancer isn’t a predictable disease. I feel a sense of responsibility to have my apartment set up as simply as possible, clear out some clutter, and be prepared for anything that I can, to ensure that I can live independently as long as possible. That may be another 30 years with nothing else mucking things up. That’s the ‘plan’…but cancer doesn’t respect plans.
This all sounds so much more depressing than I really feel- to me it’s just reality. I need to be as prepared as I can be, while not being tied to a diagnosis that has pretty well been treated. Relapse can still happen, but my new oncologist is checking genetic markers often. He encourages patients to get things checked out if there’s any question. He ‘gets’ the emotional component of having the ‘big C’ and knowing that it’s a mind warp for a while.
The news anchor and now the 11 year old have opened my eyes up to how blessed I am to still be here to even be a bit freaked out by their deaths. I can’t imagine the pain their families’ are going through. No warning. My prayers go out to them.
I need to figure out how to live better within my physical limitations. I’m still very fortunate. Now just to stop being a bit scared. A lot.