Letter to My Oncologist

First of all, I can never express enough gratitude and appreciation for what you did to treat the leukemia I was diagnosed with in 2010.  I’m thankful to God for your skills and incredible knowledge that helped to save my life.  Your awareness of the latest treatments for acute promyelocytic leukemia is wonderful .  I’ll always be thankful for that.  I often wish I had the chance to find out more about Iran from you. I’m sure you could tell me things that I’d never know from a book or documentary.  Because of you, I’m more interested in TV shows that focus on Iran, as I have respect for you and your skill as an oncologist; I want to know more about where you’re from. 

But I feel so misunderstood by you when it comes to losing the weight I gained during chemo.  Every single appointment revolves around my weight, and I’m really sick of it.  I’ve told you about my history with eating disorders, and while I’m aware that you don’t specialize in them, you must be aware of the nature of EDs.  The only time you backed off was when I was in tears trying to explain that I KNOW I need to lose weight. Nobody beats me up more than I do over my weight.  It is painful to hear it from someone who doesn’t know me aside from the leukemia.

Did you have to openly chastise me in front of the med student?  Up until then YOU had said that the weight gain was a side effect of the chemo. When I said ‘chemo weight’ and you told me “don’t you blame the weight on the chemo” when the med student was there, it was confusing and shaming. Was that for the med student’s benefit?

When you thought I was depressed, as in clinically depressed, you backed off. I’m FRUSTRATED.  You backed off that day when you saw I was upset.  But yesterday, when I had no outward signs of being bummed out, you started in again. I’m not going to keep showing up to hear about my weight  from a doctor who doesn’t deal with weight issues.  Not gonna happen. You deal with the cancer. Period.

You suggested I go to the YWCA to swim. Do you understand that heated pools trigger the dysautonomia?  I wear an ice vest to appointments, and that didn’t occur to you?  Well, I guess that’s understandable since you don’t treat dysautonomia.  You don’t know enough about me to know that I can’t walk unsupported for very far. I do OK in my apartment, but if I go to the store, I need the cart for support.  I was using a walker IN my apartment up until the day I was admitted to the hospital for that first admission when the leukemia was diagnosed. I had a partially torn ACL and medial meniscus in my left knee; you didn’t know that. It never got fixed, and I’m not sure how well it healed since it still hurts now and then. I was supposed to get a knee replacement done.

You asked about specific high calorie snack foods yesterday.  Do you have any idea how long it’s been since I had chips, cookies, cake, or candy in my apartment?  No?  I don’t either.  I don’t buy them.  The biggest treats I have are freeze dried apple slices that pack in a whopping 38 calories per bag.  Oh, that’s right- you told me to quit eating fruit.  Really?  Unsweetened fruit is a very basic food.  It’s on the diabetic meal plan I have that was set up by a registered dietician. I’m sure she got more nutrition education than physicians do (or her job wouldn’t exist). I’ve read about the basic nutrition classes that US med schools require. I’m not convinced that Iranian med schools demand much more with instructions to not eat unsweetened fruit.

I don’t need anybody to tell me I need to lose weight. Do you think I’m blind, or stupid? Or maybe you just think I don’t care and sit around eating bon bons all day. How insulting.  There hasn’t been a day in over 35 years when I haven’t considered my weight.  Are you even 35 years old?   I was badgered by my mom about my weight from the time I was six years old.  Then I took over, and equated my weight with my self worth for decades. It has been something that has haunted me for years, and I’ve worked hard to keep from letting it destroy my life. I don’t need (OR WANT) you to keep harping on me about my weight.  I know it needs to come off.

I’ve been an RN for 27 years, and a diabetic for 17 years. I know how being overweight is hard on a body.  I get it !  I’ve seen my regular doctor about it, and will see an endocrinologist next week. My blood sugars were never the same after chemo.  Is that my fault also?  I know that insulin is a problem when someone gains weight, and insulin stores fat.  I can’t not take it.  You don’t realize that I was 40 pounds lighter when I started on insulin; I wasn’t ‘fat’… somewhat overweight, but more than 100 pounds less than my highest weight. You don’t know about that, because you don’t do anything but tell me to lose weight over and over and over again.  You don’t know my whole medical history, or the daily struggles because of being disabled (I do pretty damn well, considering). You see fat and cancer.  Well, I’m in remission; maybe it’s time to have someone else follow me until the five year mark when I’m considered cancer free.  Someone else can do the yearly bone marrow biopsies.

Do you get after your obese staff members in the oncology office like you do patients?  Is that why nurses no longer go over the medication lists with me when I first get there, and why I found 16 errors on my list when I went over it today? Did the nurses leave?  Or are there techs in place of nurses now to save money?  I know that isn’t something you can control, but look around.  Don’t talk to me like I’m the fattest person you’ve ever seen.  I’ve been in your office and in the hospital enough to know that isn’t true.

I feel like less of a person every day because of my weight.  I know that’s not right, but it’s the truth. You aren’t helping that. You only let up one time (when I was in tears) because YOU had done so much to keep me alive and didn’t want me to be depressed.  It’s not about you.  I appreciate what you DID.  But what you’re doing is damaging.  I hate coming to appointments, and will continue to refuse being weighed at your office if I keep coming at all.  You did a great job with the leukemia while I was still being treated, but now, it feels a whole lot more like harassment.  Continuing to tell me repeatedly that I need to lose weight is so counterproductive I can’t even explain it.  It drives home even deeper that my weight is more important than anything else.  That is a great way to trigger something I never want to go through again. And something you really don’t know much about in my history.

I have to make a decision about whether or not I’m coming back.  I know my primary doctor can refer me to another oncologist.  I don’t want to keep seeing you three times a year just to be lectured about the obvious in a way that is demeaning and shameful.  Thank you for the incredible job dealing with the leukemia. But get back when it comes to the continued lectures about my weight.  I’m not going to do it.  When appointments are more of a sense of dread than they are productive, it’s time to hit the road.

Update: My primary doc is sending a referral request to another oncologist 🙂

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7 thoughts on “Letter to My Oncologist

  1. Wow. I’m sorry that you have to deal with someone else’s lack of understanding like that. That sucks and is totally out of line for them to be treating you so badly. Please hold on to your knowledge of how much it sucks to be on the relapse road and don’t let it take you there. I think you’re right. Its time to find a new doctor. Tell them to refer you to a fat one. 😛 *hugs*

  2. I love those “you do realise you’ve gained/lost weight” doctors, you’d think they would have better things to do lol. Carbs all the way!! xx

    • I know… If I were going back, I might wear some novelty glasses that are about 2 inches thick, get some ratty teeth (only good for sucking down ice cream), and a plastic machete’ going through my head to explain the obvious loss of brain cells. Ug. LOL

  3. Jill, Im so sorry you are having to deal with such ignorance and lack of compassion. Wish I could hold your hand, squeeze it and say ‘bugga him, the fool!” then share one of your apple slices xxx

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