Prior to being diagnosed with acute promyelocytic leukemia in 2010, and going through daily chemo of one form or another for roughly 20 months, I was tolerating my weight, even though it was more than I wanted to weigh. I could stand to be in my own body. The initial chemo was ‘skinny’ chemo (Ara-C and daunorubicin), resulting in a weight loss rate of 5 pounds/week. Then I started arsenic trioxide infusions (50 total in two 25-dose cycles), methotrexate, M6-mercaptopurine, and had been on ATRA as soon as I was admitted to the hospital.
I only found out I had leukemia from doing annual blood work. Many people are diagnosed at autopsy since the disease doesn’t have any ‘red flag’ symptoms. The lifespan from onset of the disease to death if treatment isn’t started is at best 30 days. I got to the hospital at week 3 1/2 after seeing a hematologist who wanted to schedule a bone marrow biopsy for the following week. I didn’t make it that long. Three days after the appointment, I was in the ER with significant shortness of breath, likely due to severe anemia. I know of an 11 year old boy (nephew of a coworker) and a local news anchor who both died within 1-2 days after getting medical help for vague symptoms, from brain bleeds caused by the reduction in clotting cells (platelets) from the leukemia. I already had the beginning signs of clotting dysfunction with many, many purple ‘dots’ on my legs (purpura), and the bottom of my right heel formed a black ‘scab’ under the skin that fell off.
Google AI re: lifespan of untreated APL-
Once I stopped chemo, my total weight gain was about 55 pounds, and my oncologist wanted the weight gone yesterday. I told him about my history of eating disorders, and he told me to quit eating fruit (not sure about the correlation, but it seemed odd that the phytochemicals in fruit were ignored). He threatened to refer me to a bariatric surgeon. I was so distraught about his lack of nutrition and eating disorder knowledge that I changed to a different oncologist, which helped immensely. The crying for days ahead of appointments with the other doctor were too much. He’d done a great job with the leukemia (remission in 3 weeks, and considered cured in 2016), but the post-chemo follow-ups were really bad. For someone who has always been haunted by childhood weight demands (from mom) and an anorexia diagnosis at age 17, it was brutal to be so pressured to drop weight when I was just trying to recover from surviving the friggin’ leukemia.
So, have I been blaming myself for something that I can’t control ? I have always been one to do what I have to do in order to manage medical issues, and this has been a nightmare. I tried NutriSystem, and in general only ate one meal throughout the day (decades-long pattern), as well as relapsing with the active restriction in 2021- five years after I was considered cured of the APL.
This is what Google AI said…
Could it be that the weight gain isn’t my fault as I’d been led to believe? I’ve blamed myself for weight issues for decades. Unless I starve, the weight doesn’t budge, and if I do lose any weight, I always goes back to the same weight, which is so much more than is healthy. Starving also puts me into acute renal failure (twice in the past 5 years). The weight is also physically uncomfortable, and adds to the degeneration of my joints and spine just from the load bearing aspect. I feel if I give myself a break, I’m “excusing” the weight gain, and while today’s Google mining suggests otherwise, it’s still something that torments me. I feel too disgusting to show my face. I haven’t been to a restaurant for 9 years, and other than that haven’t eaten around anyone more than 2-3 times in the last 7-8 years out of shame that I look like I don’t deserve to eat.
At least this gives me something to think about regarding how hard I beat myself up over my weight. I’m not sure I’ll ever accept my body completely, but even a bit of ‘tolerance’ would help. It’s also about finding a way to manage enough food to protect my kidneys since cutting carbs too much triggers the acute renal failure/acute kidney injury. But I don’t want this to turn into an excuse to eat more. I’m supposed to be getting in more calories than I am (never met the target range), and that freaks me out. Every few weeks, I get close for a day, but then back off. On the other hand, if I can internalize that the pathophysiology of APL treatment causes weight changes, maybe the reduced stress of feeling I have to prove I’m doing something about my weight will decrease cortisol.
There is a correlation between the battering my body took from the APL and the intensive chemotherapy regimen I was given and my inability to lose weight gained during chemo. I need to figure out how to get that to sink in, and come up with a way to live with something that is a result of fixing another thing that tried to kill me. Immediate thought- I’m too ungrateful for just being ‘alive’ (kind of a technicality some days when everything is acting up). Now, I’ll kick myself for that.
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