The New Oncologist

I saw the new oncologist yesterday. I was a bit nervous, but that ended up being wasted energy. The new guy is young, and the cancer center he’s associated with is pleasant. I told him that I’d been quite satisfied with the care the other guy gave regarding the cancer, but I was having a lot of trouble with how he handled my weight. About half of each appointment was spent telling me “you have to lose weight” over and over. I’m not stupid or blind… I know that I’m overweight, in a way that haunts me daily.  I told the last guy that I was working with my regular doctor (whose JOB it is to help with that -NOT his) and also an endocrinologist, since my blood sugars and insulin requirements went nuts during chemo.  There are so many things that were affected by the chemo, as well as weight gain, and now he gets very dismissive when I refer to the weight gain as being from the chemo. I didn’t weigh this much before chemo… during chemo when I complained about the weight gain, HE said it was the chemo- but not now?

The new guy understands about how the autonomic dysfunction (dysautonomia) fits into ‘exercise’. If I get my heart rate up, there’s a good chance I’ll lose consciousness. If I get overheated from exercise, there’s a good chance I’ll pass out as well. If the fibromyalgia or disc/joint pain gets booted up a notch from repetitive muscle/joint movement, the pain will trigger the dysautonomia. I can do some simple stretching, and if I  walk anywhere, I have to have my rolling walker (or a shopping cart), ice vest, cell phone, and blood pressure cuff.  I would love nothing more than to be able to take off and go walking, preferably with my camera, like I used to, and enjoy being outside. Unfortunately, that’s not safe.  Being unconscious is to be incredibly vulnerable to the not so nice people in the world.

The new oncologist said the only thing he really gets after patients about is smoking. I quit 5.5 years ago when I had the pulmonary emboli (multiple blood clots in all three lobes of my right lung, with enough ‘volume’ to push into my heart, causing the symptoms of a heart attack).  I smoked two cigarettes before driving myself to the emergency room … do not try that at home !  That was that. Cold turkey.  I’m lucky to be alive from so many things.  Anyway, the new doc told me that one day he’d lost three patients from smoking-related cancers…he was angry.  He hated what their smoking had done. On the way home, he’d stopped to get something to eat, and saw five guys smoking in the parking lot. He went over to them, and gave each one of those guys one of his business cards!  I like a doctor with cajones.

The new guy understands what a history of eating disorders can do to efforts to lose weight. It can’t be some crazy crash diet, or things can go south fast. I’m not sure I’d survive another relapse, regardless of my weight.  Eating disorders aren’t about weight, and the symptoms can be very severe in someone who looks like they could shed some serious pounds. Been there, done that. I don’t want to go back to that place.

The new guy has overweight sisters, and he’s been overweight himself. He understands that weight loss requires more activity than what I’m able to do right now.  He understands that I’m stuck between a rock and a hard place, figuring out the balance of calorie reduction, activity, and avoiding the other medical stuff I have to consider.  He didn’t make my weight a source of shame and humiliation. He saw more of the ‘whole’ me, and didn’t focus on something that I’m not there to have treated by him.

I signed consents so the new guy can get information about my cancer treatment from the other guy.  The other guy has no clue I’m not coming back, and I’m not sure how to handle that.  I am very thankful that he knew the current treatment for acute myelocytic leukemia, subtype M3.  I’m very thankful I’m still alive (again).  I also believe that the other guy’s reasons for badgering me about my weight are because of health risks- I get that.  But the way he did it, and the way he didn’t let up after I told him I was seeing other doctors for that (and wanting him to back off and stick to what I was seeing him about), or have any clue about how eating disorders fit into my history made seeing him a nightmare.  I dreaded appointments.  I refused to be weighed, and he still kept on for about half of each appointment telling me I needed to lose weight. The one time he backed off is when I started crying- THEN it became all about him, and how I “couldn’t be depressed” (I was frustrated- big difference) since HE had worked so hard to keep me alive when I was “dead sick”.  I had to be OK for him?  I don’t think so.  I’m very thankful to be alive, and I know his knowledge did that. But my obligation to him lies in my payment source. He’s getting paid. I don’t work for him or his need to feel good about how I’m doing.  That might sound cold- but normally I don’t have to make the distinction about who gets the care during an appointment.

I’m not sure about how to handle any contact from the other guy’s office, or him, when they get the requests for my medical information.  I don’t dislike the guy. I think he’s a good doctor. I think there may be some cultural influences in how he’s been talking to me, and also the seeming unawareness of my total situation.  I didn’t start out ‘normal’ when I was diagnosed with leukemia. I was already disabled. I have a history that he never was part of.  I don’t feel he really ‘got’ what I have to balance- and that wasn’t a big problem when I was lying in a hospital bed for six weeks.  The activity, temperature, and pain issues were minimal, so not something he had to deal with.  But I’m still stuck with those whether he ‘gets it’ or not- and I’ve got to take care of myself.  So, when/if I’m contacted by his office or him directly, I don’t know how to give him any more reasons than I already have. I’ve told him over and over again that the weight is something I’m painfully aware of, and am seeking help in dealing with…what more is there to say?  I don’t want to be nasty.

The new guy is someone I can work with.  He understands his role in my cancer follow-up care, and gets it that I am aware of my entire health history, and current medical issues. He understands that I’m an RN, and have that knowledge as well as my own ‘experience’ with living with myself, and managing the disorders I have.  He understands weight issues, and doesn’t use shame or demeaning comments. He’s also kinda cute!  He’s got a sense of humor. He was willing to do a different type of heart function test (a 2-D echocardiogram, instead of a MUGA scan- which isn’t a ‘bad’ test, but lying on a metal table for an hour is painful- if that had been the only option, I would have complied without question).

Even after just one appointment, I felt like more of a part of my own health care team.  The new guy talked about prognosis (very good), what can happen (and what can be done- also not horrible news), and expanded on more than just the here and now.  At one point, that’s all I needed to know- but now, during the longterm follow-up, I do need to know the big picture. The other guy was very good at telling me the ‘now’ stuff, and was spot on when things happened.  Maybe it’s not just my body that grew, but maybe I just outgrew that other doctor and his way of doing things.  Anyway, I’ve begun a new chapter.  I don’t feel judged or belittled at the new place, and that’s a good place to start. 🙂

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 🙂

Diabetes After Chemo

I woke up this morning with a blood sugar of 205mg/dl.  Very NOT OK.  Before chemo it was between 65-85 mg/dl nearly every day, and rarely over 100 mg/dl (where it’s still tolerable).  After getting off of all chemo, it’s been around 140; sometimes lower.  I don’t know what’s going on this morning.

Ever since being on chemo, my blood sugar control has been totally nuts. There has been no control, but oddly, my A1C in February was 6.7, or around there. I was amazed. I expected it to be over 7 for sure. Usually it’s well below 6.  I’ve had great control, with a fair amount of effort.  My body is still figuring out it’s new normal since the leukemia.  The blood sugars (and need for more insulin) don’t help the weight loss issue.  Insulin stores fat. I need to lose the forty pounds I gained while on chemo.

I have to admit, my carb counting has been ‘fair’.  I know the carb counts of most things, and do look at labels, but I’m not doing the extensive counting that I did before. I need to get back to doing that.   I don’t want to go blind, lose a leg, or have kidney failure.  Nope.  Don’t want those on top of what’s already wrong with me; I’d end up in assisted living before I’m 50 years old.

I took the usual amount of NovoLog insulin this morning, and added a bit because of the psycho fasting blood sugar.  Now (2 hours later), my blood sugar is 135mg/dl.  I’m glad it’s going down, but not sure I’d planned for it to drop that fast.  It still needs to get considerably lower before it’s a problem.  I’ll be sticking my fingers a lot today.  It’s sort of a ‘sick day’, except I can’t figure out what is ‘sick’…

Chemo changed a lot of what had been controlled: my weight, my blood sugars, and my insulin dose.  I’ve been off of chemo for nearly a year (11 months).  I’m going to have to go back to the rigid counting and figure out the new insulin:carb ratios.  My I:C ratios had been so steady before.   It’s been nearly 2 1/2 years since the initial diagnosis.  I have to remember my ‘old normal’ way of dealing with the diabetes, and apply it again to this ‘new normal’… which isn’t normal at all.  It’s a lot like starting from square one.

My physical situation is such that sitting exercises are all I can do.  If I walk more than the distances inside my apartment, I have to use a walker. Or shopping cart.  My balance gets iffy. So exercising is a problem.  I’d love to walk around the neighborhood on cooler days.   That IS my ‘old normal’ and ‘usual decrepit’ – LOL.  That is back to ‘normal’, which hasn’t been ‘normal’ for a long time.  I’d torn my left ACL and meniscus (mildly) the summer before the leukemia diagnosis, and because of beginning to feel lousy (thinking I was just being a slug) I postponed the knee replacement that was recommended.  When those big ball players roll around whimpering or screaming on the field after their knees go out, they aren’t being weenies- that HURTS. I’d been using a walker in my apartment up until the morning I was admitted to the hospital when I was diagnosed with leukemia.  Being physically limited is nothing new.  Anyway, I’d like to exercise more, but it isn’t generally safe.

So, I’ve got to buckle down and get these blood sugars under control.   I’ve got to lose weight. And I’ve got to get it done without triggering old eating disorder habits.  Sometimes it seems overwhelming.  Sigh.  But I’ve got to do something.

The Fat Chemo

When I was diagnosed with leukemia, and told I’d be getting various types of chemotherapy, my old weight conscious brain snuck up and was secretly pleased at the idea of weight loss.  I’m sure that sounds nuts, but it is what it is.  Initially, I did lose quite a bit of weight with the ‘induction chemo’ (the first kind someone is given).  About 5 pounds a week for the first five weeks.  The dietician was always in my room, bless her heart. She tried everything. I was given every menu from every cafeteria and unit in the hospital. She even managed to find sandwich cookies in about four flavors when I told her I wanted junk food.  Then one day later, I was into kosher pickles. Go figure.  My mouth hurt, my tastebuds jumped ship, I was nauseated, and just messed up inside.  So, I dropped about 25 pounds during that first hospitalization.  While I knew that I needed to keep my intake up as best as I could, I wasn’t horrified at losing weight.  If I had to get cancer, at least I could get some sort of decent side effect, and lose weight.

Enter karma.  Shouldn’t have been so disinterested about  muscle wasting and my body being poisoned.

When I went home from the hospital, and was only on one of the chemotherapy pills, I gradually gained back the weight I’d lost in the hospital.  I was more than mortified.  As I had other types of chemo for a total of nineteen months, including fifty doses of  arsenic, I gained more weight. That hurt.  How rotten.  Part of it was side effects from the chemo. My body was in a total state of disarray. My blood sugars were nuts, my insulin dose went way crazy, and I was a complete slug from fatigue.  So much for losing weight.  I was blowing up like a toad.

Now I’ve been off of all chemo for nearly a year, and I’ve done just about everything I know to do to lose weight.  With the history of eating disorders, I’ve needed to be careful.  I can quit eating without much trouble; then I don’t start eating, and that’s a problem.  I’ve counted calories, got Richard Simmon’s Food Mover (actually the most helpful), got raspberry ketones, and done what I can within the physical limitations I’ve got (I’m disabled) to move more- but that leads to pain, which is never good as that leads to my body going into a fight or flight response with the dysautonomia I have.

I’m trying to be patient, but it’s not easy.  The weight isn’t about how I look, but more about how I feel and from a standpoint of being healthier.  I also want to wear my rings- I can still fit into my earrings, but that’s small consolation.  I also can’t afford a new wardrobe, so I look rather  ‘attic meets thrift store’.  I have plenty of perfectly good clothes from before I got cancer.

I’m still trying to figure this all out. Some days I’m really not good at it, but I keep trying.  I didn’t know there were fat chemos.  Nobody ever talks about people gaining weight when they have cancer. As I’ve read up on the topic, it seems many people (especially women) have this happen.   I have a lot to be thankful for in that I survived.  I could be skinny and dead, and there’s not much point in that.  Some warning would have been nice.  When I was listening to all of the stuff I’d be getting, and things that would happen, someone could have slipped a “oh, and you’ll gain more weight than you’d like”, and I wouldn’t have really noticed.

I definitely notice it now.  But, at least I’m alive to whine about it…