Atypically Recovering: On My Own No Matter How This Goes

Tag: eating disorder in older adult

  • Am I Fighting A Battle I Can’t Win? The Longterm Effects of Chemo for APL on Weight

    Patient receiving Gemcitabine chemotherapy beside a daily medication organizer
    Image- generated by WordPress.

    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-

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    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…

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    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.

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    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.

  • Healing From Toxic Therapy

    Image- online search (not my photo)

    I found a great post about getting through the aftermath of unsuccessful and/or toxic therapy, and will be using it as a sort of template for this post. Obviously, this is about a therapy relationship, not a social or intimate one. My comments refer that.

    https://www.goodtherapy.org/blog/10-steps-to-recovering-from-toxic-trauma-bond-0110175

    – Make a commitment to live in reality:
    This part wasn’t so hard for me. I’d been feeling odd ‘off’ stuff in my gut for a couple of years before I finally had enough, and blocked my ex-therapist on all communication vehicles except email. I haven’t spoken to her for about a year. The lack of contact has been liberating, though the emails that I only used for a few months (after 7-8 months of NO contact) were mostly benign- but I’m still very guarded. I haven’t heard anything for several weeks- and that’s OK.

    – Live in real time
    This hasn’t been difficult. I don’t have ‘hope’ or ‘what ifs’ with this situation. It’s over. Period. That doesn’t mean that there isn’t grief. Over 3 1/2 years as an ‘official’ patient (scattered and sporadic as contact had become) is a chunk of time, with some OK parts at the beginning. Grief isn’t about hope. That ship sailed long before I cut ties.

    – Live one decision at a time, one day at a time.
    I’m isolated, disabled, and very much a loner, so not a lot of decisions to be made. I have a lot more thoughts about my late dog, late parents, and family who is still alive and part of my life. All-or-nothing thinking hasn’t entered into this for me, because my head is invested in finding something else to help me through the eating disorder (though, admittedly, I sometimes have days when my attitude is more like “forget it”).

    – Make decisions that only support your well-being and sense of self.
    I have trouble with this one. Beyond the chronic medical mayhem, I don’t think much of myself to invest much into me, and I know that has to change. I’ve never been good at affirmations (they literally cause a physical ‘recoil’ reaction), or hearing positive things about myself. I’m not sure how to change that, but it’s on the radar now. I am in self-preservation and self-protection mode, so for now, that has to be enough.

    – Start feeling your emotions
    No. Problem. With. This. One. Mostly the memories of my sweet dog that I had to let go in peace in May 2025 are what get the waterworks going, and I’ve been getting tissues in the 10-box pack from Costco. Living alone, I don’t have to hide when I feel like goose poop, so that helps. I’ve also been missing my late parents more. In some ways I think that’s good since I kind of coasted through mom’s death by trying to help my dad, and got through dad’s death by being numb. I miss both of them. They were human, fallible, and did the best they could with what they had to work with, and while there was trauma from one of them, it was forgiven decades ago.

    – Learn to grieve.
    In this situation it refers to the toxic/painful/harmful therapy hopes. This one is tough. I do have mixed emotions about some things, but I think that’s OK. I have gone through some times of anger, tears, and kicking myself for not leaving when I knew it wasn’t a good situation. There’s more work to be done with this, but knowing that I’m safe and away from additional chaos sometimes is ‘enough’ to get through whatever is painful at the time.

    – Understand the ‘hook’ and identify what, exactly are you losing.
    In a therapy relationship, for me it was the hope of getting well, and not being a slave to the eating disorder ‘voice’ (more like loud thoughts). That’s what I signed up for and what never happened. I lost the image of the person I’d seen on TV who seemed to be such a beacon of hope, when in reality, the entire process was more like a lighthouse without a lit light. There was something there, but it was intangible and too dim to see by design, as well as charisma with a motive. On the surface that ‘beacon’ was idyllic as far as therapy goes. In reality, it was the realization of the delusional views I’d had about someone I never met in person.

    – Write a list of bottom-line behaviors for yourself.
    This one wrote itself. It was the constant requests for money for personal reasons after making it very clear that I could no longer afford therapy. When I stopped sending money, contact dissipated. My original weekly (? – sometimes she did call more often, but there was no rhyme or reason) phone calls came once a month. Early on, they were more frequent. Messages weren’t seen for up to a week. Emails weren’t read for months. Those are deal-breakers. Line in the sand drawn and crossed multiple times UNTIL I stopped complying.

    – Build YOUR life.
    I’m limited in what I can do physically, but I do have things I enjoy when I’m able to be more active. Even on ‘slug’ days, I like music, and planning things to do around my apartment, which is a disaster from a move that half killed me in June/July 2022, and activity restrictions that started when therapy did (in late June 2022). They were set up by both my ex-therapist and my dietician who hadn’t met, but told me the same things, which was helpful. So I may have modified dreams, but they’re still good and give me something to look forward to, even if it takes a considerable while to get done.

    – Build healthy connections.
    As I said above, I’m isolated and have been a loner for a long time, and I’m OK with that. My dog was probably my closest ever relationship since we were together 24/7 for 12 1/2 years. I’m not a people person any longer. When I was working, I loved my job, but that’s been over for 24 years. I do still have some contact with two friends who are former coworkers, and they’re the kind of friends that I may not talk to very often, but it’s like we just hung up the phone from the last call each time we talk. I also have a few friends here, and some family who don’t live nearby, but who are incredibly dear.

    More goes into healing a broken relationship that is so emotionally intimate, especially when it was supposed to help heal a disorder that can be lethal. There’s some ‘un-brainwashing’ to be done. There’s finding that former core person and ways to minimize the pain of memories of what was, and what will never be. I’ve been using YouTube videos by Tabitha Farrar and Elisa Oras, as well as ‘in the moment’ recovery videos by Elzani/Elzani Singleton, Megsy Recovery, and surfing other channels. I often have ‘Sorted Food” or “Grackle” on when I’m eating, as distraction and to watch people who ‘do food’ normally. For more lighthearted goofiness, ‘Jolly’ is fun. Use what works for you, to manage the void and tame the voice. I’m no expert, obviously, but I’m looking for anything that might help, when what I’d hoped for didn’t pan out.

    I’ve had several therapists over the 45+ years. Most were good, but not all. If the above comments on the points in the blog post don’t fit, consider this:
    https://psychcentral.com/blog/recovering-narcissist/2019/03/5-signs-of-narcissistic-therapists-the-ultimate-covert-wolves-in-sheeps-clothing#1-They-violate-boundaries