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. 🙂

The Cost of Healthy Eating

Over the past several months I’ve become much more interested in the quality of what I eat, as well as the cost of eating well.  I was diagnosed with leukemia in late March 2010, and went through 19 months of nearly continuous chemotherapy (either IV or pills).  The type of leukemia I was diagnosed with is acute myelocytic leukemia, subtype M-3.  That particular type of leukemia is diagnosed by analyzing my chromosomes.  It’s that ‘deep’ in how it impacts someone’s body.  Two of my chromosomes had switched their ‘arms’…also known as translocation (on chromosomes 15 and 17).  I wasn’t born with this, or I would have died as an infant.  Something caused this change.  While I don’t know for sure what it was, I’ve been looking at the impact of nutrition, and more importantly, what types of food are produced in this country.

I had heard vague information about genetically modified organisms (GMOs) and how they relate to our food supply.  The vast majority of the corn, soy, and canola produced in this country are GMOs.  This is a very rudimentary explanation; there is plenty of information online. “GMO” can mean they have had a bacteria that acts as an herbicide (weed killer) injected into the seeds, or  a bacteria that acts as a pesticide (bug killer) has been injected into the seeds. These are the seeds that grow up to be our food, and these bacterial/ chemical changes haven’t been tested on humans.  Go ahead !   Look it up !  Monsanto (the parent company of the majority of agricultural seeds) says it’s not needed.  The mice got sick, but that’s OK.  Monsanto came up with the hormones given to cattle to increase milk production.  Oh, and Monsanto also made sure that NutraSweet and Equal didn’t require the full amount of testing the FDA originally wanted once they purchased the company that made aspartame.  How handy for them ! $  Monsanto is a pesticide and herbicide company… producing our food seeds.

In the years since GMO foods have been around, food allergies and intolerances have increased many times over.  High fructose CORN sweetener has contributed to obesity, as it’s added to who knows how many things- and that corn hasn’t been tested on humans.  I don’t remember peanut allergies when I was a kid- but now some schools don’t let ANY kid bring the old PB & J in their lunch in case someone in the class is allergic to peanuts. I wonder if it’s the peanuts, or the additives in the peanut butter.  Monsanto sure doesn’t want us to know.  In fact, they don’t want OUR food labelled saying whether or not it is even a GMO food at all !  Yet many countries refuse to allow our  GMO crops within their borders, and/or don’t grow or sell GMO products in their countries.  But in the US, it’s just fine.

Here’s a way to identify produce.  You know those annoying little stickers on each piece of fruit?  The code tells you if they’re organic, conventional (topical pesticides), or GMO.  If the number starts with a ‘4’, it’s been grown conventionally.  If the sticker number starts with a ‘9’, it’s organic.  If it starts with an ‘8’, it’s GMO.   “Hate 8, nine is fine”  is how I remember that (and four is OK, but needs to be washed well).  GMO foods can’t be ‘washed’ of their ‘GMO-ness’… it’s IN the genetic make-up of the product.  And you eat whatever that is.  Wheat has also been genetically modified for decades, even longer than the others. Rice hasn’t escaped, either.  If your steak, bacon, or eggs used to eat corn or soy based feed, you don’t escape in the barnyard, either.

The cooking oil spray you use?  More than likely it’s canola or soy.  You can get oil misters and add your own organic oils.  It’s a bit more expensive, but chemotherapy costs a lot more.  The snack foods with corn?  GMO.  ‘Healthy’ popcorn?  GMO.  You can look up GMO foods/products online and find out the horrible list. It’s in nearly everything unless you pay attention.  It’s possible to get good organic products- but unless it says “USDA Certified Organic”, it may still come from GMO seeds, but is grown organically.  It’s a tricky business.

I’m on disability, I’m diabetic, I’m a cancer survivor, and  I’ve got a somewhat weakened heart from chemotherapy (so retain sodium/fluids more than I used to).  Food quality is important, and my budget is limited.  But it’s about priorities.  I can’t afford to buy everything ‘organic’. I pick and choose (there are websites that tell about the most important things to buy organic if you don’t go in all the way).  I’ve  still got some ‘bad’ foods around, but I’m more aware, and make choices that work with my budget. I still get a few things that I really like once in a while, even though they are GMO-ridden. I’m working on that !

I’ll always wonder how much the contamination of the national food supply affected me ending up with leukemia.  I’ll never forget the day I got the bill for the first six weeks of being hospitalized, and seeing that the hospital and drug costs alone were $300K+.  Nearly a third of a million dollars. For six weeks of a disease that will be monitored for the rest of my life. Medicare ended up with most of that, and I got help from the hospital itself for my part; I didn’t qualify for Medicaid.  That didn’t include the doctors.  Or the next 17 1/2 months of medications, office visits, chemotherapy in the hospital (I had to be on a monitor), chemotherapy pills (one was $120K/year), lab work, bone marrow biopsies, and heart testing.  I’m sure in the time up until then, I didn’t eat $300K+ of any sort of food; organic would have been an overall bargain.  I’ve since purchased a Medicare supplement that covers virtually %100 of my part of the cost of being on Medicare.  Medicare doesn’t come near to covering the bills without a GOOD supplement (post for another day !).

Become informed.  I still need to do a lot more reading, but at least I’m aware of what items are pretty well guaranteed to have GMO crops in them.  It’s a staggering list.  But learning more gives me the power to change how I’ve done things.  If that means I reduce my chances of having to do another round of cancer treatments, it’s worth it.  And spending a bit more on quality food may increase my odds in many areas of my health.

Why Blog?

For me, it’s a combination of catharsis and purging my mind of things I haven’t talked about in a way that makes me feel heard.  Many people know about the things I write about, but they don’t really know what went on, and the extent of some things.  Other things are just good memories that I want to record.

I can be me- unknown in the real world by most who read my posts. There’s a freedom in anonymity that is enticing.  I don’t have to censor much.  I can unload- and in the process, hopefully say something that resonates with a reader who is either struggling with some inner battle, or understands the nursing profession.  I don’t have a single topic focus.  I’m just emptying my head.

Most of my blogs are fairly long- and some may say that will keep them from being read by most folks out there. That’s fine.  I edit what I feel is appropriate to the topic, and leave it at that.  If people want to read them, fine; if they find them too long to bother with, that’s up to them.

Since starting this on August 10, 2012, I’ve had so many things come to mind that I want to write about.  I live alone.  I’ve been through a lot.  I don’t discuss a lot, and it’s time to dump it.  I can’t be the only one who has had the same experiences- and so I throw my story and feelings out there.  Do with them as you will.  My hope is that they make a connection and help someone- either through a tough time, or a reminder of something funny.