Tuesday, October 2, 2012

Rediscovering Cancer

It seems odd today, after 20 years of having no tumors that there was a night when I heard a doctor tell me I had to have my tonsils out, and then three hours later waking up to hear, "We had a complication, so it took a lot longer than we expected."  The complication turned out to be a tumor the size of my fist, and find out it was probably cancerous. That's hard to take at the age of 26, never mind that I was in the middle of graduate school, and my family lived 3000 miles away. I didn't want to deal with anything that involved hours of hospital time, or worse, death.

Chemotherapy was something I couldn't have imagined. In my head, it meant sitting under a microwave or an x-ray machine, and having some weird probe stuck in my head or something. I don't know what I expect to have happened. But what it was-  and still is-  having a seat in a comfy chair, surrounded by several other people doing the same. Some knitted. Some watched the television. We all had IV's, some inserted in catheters placed directly in their chests or upper arms. I had a "strong vein" because I was so new to it, so I had it in my wrist. Ugh. Not pretty. Painful? Yep. But the seven or eight of us in the big Chemo-suite, just did our own thing. We'd get an x-ray in the area affected, then before or after, under go the IV cocktail.

In my case, the liquid wasn't as thick. I was still 'getting tested' which apparently meant I was on a lower dose of the medications. By the fourth treatment, I could see the liquid went from a drop to a resounding plop into the tubing, as it was much thicker, and by then I did get a shunt in my chest. I've had this done twice in my life. The first time, the sight of warm blood trickling in beat of the heart was unnerving. The second time, years later, it was not easy to see, but feeling the warmth of the liquid was equally unnerving. The scar left isn't cool though. It looks more like a chicken pox mark.

When all of the tests finally were completed, back in the stone age of the 1980's/90's, it was a full 17 weeks of waiting for the results. That meant having the chemotherapy, regardless of the outcome. It meant, having a very toxic cocktail of medications put into my system, regardless of the actual results of cancer or benign. When they finally did arrive, I had completed three months, and was very much weakened by all of it. With the results in the cells inside the core of the tumor were shown to be cancerous, but the outer cells seemed to have been healthy cells that swallowed up the bad ones. If people have cancer, it generally works that the cancer cells start to take over cells and blood supplies, thereby killing the animal, in my case, human. But, again, in my case the good cells were slapping the bad cells around for some time, and thus ended my cancer scare. 

A few tests every few months, then years, showed that I wasn't getting anything else growing into my pharynx. It's now officially 20 years since the last treatment. I'm considered a "cancer survivor" even though I technically only had a small lump of evil. So why is this blog called REDISCOVERING cancer? Treatment for the disease has greatly improved thanks to the work of places such as the Dana Farber Institute in Boston. My aunt Jeannie had cancer of her lungs, and didn't discovery it until she was in stage 4, (major, malignancy), and somehow she kept her spirits up, and joyfully went bald from x-rays. Almost two years later, she finally succumbed to the illness, as the cells strangled her lungs to take her last breath. 

It was because of her illness that I worked with The Jimmy Fund, a charity of the Dana Farber Institute, that brings money into the organization for treatment, and studies to eradicate cancer. I ran a show called Comed-o-Therapy, featuring some of Boston's funniest people, that I was happy to emcee, inside the Comedy Connection at Fanueil Hall. . This year, I was asked to present a workshop of laughter through cancer, which I'm gladly doing.  

What I've rediscovered, through the loss of my aunt, and through my own experiences is that cancer can be controlled, and in some cases completely conquered. It is said that we're all genetically embedded with cells that don't do what they should. But when you're a patient, what cells do isn't what is important- it's what WE do when we are handling their eradication that makes the difference. Medically, people who laugh tend to be healthier than those who have little to no humor in their lives. I don't have the capacity, nor education to work on removing cancer from the planet, but what I do have is a sense of humor. As I write out lines that made me chuckle during my own trials, I hope that I can teach others how to survive their illness by rediscovering the silly within. Silliness is greatly overlooked, and should be part of our daily ritual, just as much as grooming, and tasks. I'm looking forward to making people laugh again, but more so, I'm looking forward to teaching a workshop that allows others to find the silly in the insanity that is cancer.

Sunday, July 15, 2012

Secret Discovered at 48

Boston Comedy Connection's Comed-o-Therapy
..and Pretty close to now.
My lifelong motto is "Can't means Won't Try". A few years back doctors, in all their limited wisdom, started me on a decade long struggle within myself. By no means do I think I'm anything other than average in the looks department, but my one pride was staying a size 5 for almost 20 years.

I did so by eating one meal a day, having tea when I had the hungries, and maybe some toast. It wasn't my way to have breakfast- feeling ill if I did. But hypoglycemia was a constant companion. For the first 20 years it was colitis that determined all of my social habits, and often tore me away from the life of a regular kid. I only gained weight when I was put on depression medication- when really, I was probably just malnourished, and needed to get better sleep habits. The meds became my new "colitis", leaving me completely evaporated emotionally, and unable to see life through clear eyes.

I shook off a course of Wellbutrin in the '90's, which also left me quite cranky, as well as anxious. Being thin again, after a few months of pudge made me happier than the meds ever did. Nearly 10 years ago, I finally met THE ONE. He met me when I was having a bad time with my genetic illness- and in a wheelchair. He met me when I was leaving an OK, but not great relationship, which was, itself, a rebound from a bad marriage. All of my baggage, and he was just himself at all times, never apologizing for having an opinion, and one of the opinions was- and still is- that he loves me whether I like it or not.

He watched me battling prednisone, Hashmoto's Thyroidosis, Trigeminal Neuropathy, Ehlers-Danlos, and as a chaser, Myasthenia Gravis. The Prednisone was supposed to help with joint disorders and chronic sinus issues. Instead it made me much sicker, and before I was ever on it, I never had any of the autoimmunity issues. And, my husband has been my rock when it came to a diet plan, Nutrisystem, and the reasons I went for it.

But today I came to a realization. Yes, I do want to be healthier. Yes, I do want my body to be as good as it can be with muscles that work, and I want to feel that pain that doesn't have to break me day in and day out. I like that I'm eating healthier, and I really like that I'm doing "wiggles" every day. My health is not as bad as it had been in the past. It's easier for me to do things, without feeling like I need to sleep the day away afterwards. Nutrisystem didn't help me lose all the weight I wanted to lose- I've always seemed to have the up and down from medications. But, it did show me that I had more options than fast food, and better ways to take care of the "hungries".

Today, my realization is simply this- I can be a curvy girl AND be happy about it. I already have the man of my dreams, and I live in a wonderful home, surrounded by so much that is what I love most about life. I had a good run of years being a petite person, and now I'm not so petite. It shouldn't mean I'm less than human, no matter how many times I feel that way. It should mean that I am a woman, who is curvacious, and I don't need to apologize for that. I am eating well, and soon I will have a regular sleeping cycle. I dance- aka "wiggle"- each day for as long as my bones allow. I have support of friends here, friends online, and more so, my DH, who is my rock, in this hard place.

Yes, I expect to stay on the program until I can at least lose all I TRY to lose. There's no "can't" for me. Some things are hard, yep, but most things are just what life offers us, and I am not better or worse than anyone else. I'm great being curvy. It's my right as a woman, and for once, in my life, it's being embraced instead of being a cause of embarrassment.

Sunday, March 25, 2012

How to Lose Weight When A Doctor is WRONG

Most of my frustration over the last few years in the medical profession has been in the absolute arrogance and ignorance these professionals have regarding weight, specifically due to medication side effects. In a majority of my prescribed meds, the side effects state, clearly and within the first three or four mentioned "weight gain has been reported".

The ignorance is not because the doctors don't know what is in the medications. The error is that as humans, it's just so difficult to consider that a miniscule number of GRAINS that make up a single pill, capsule, or liquid, can have such a long lasting and drastic affect on the body. This is the same ignorance that creates first time illegal drug users to overestimate their abilities and die. It's the same ignorance that leads people who don't use condoms to assume that they will not have an issue with pregnancy or STDs. It's why people don't understand that a single dose of Tylenol could shut down their pet's organs. And, it's the exact same logic tht I've been fighting furiously against when speaking with my medical professions regarding my six year fight with weight gain that isn't "just a few pounds" as they each all stated would be the maximum I'd have to endure. For every single medication I've been prescribed, I've gained an average of 19 lbs. At the start of my attempt to find a cure of a way to manage my conditions, I weighed no more than 119 lbs.  At the maximum, I was a full human sie larger, at 207. In fact, I weighed more than my own husband.

I was given prednisone, a full four years after recovering from the last dosage, -- a full FOUR years after getting it out of my system long enough so I could finally lose the 21 lbs I had suddenly grown that first 12 days from taking it-, I was able to lose weight and get down to 124lbs. That was five years ago. That same doctor said, just before I was to have sinus surgery, that I would have to take it again for a full week, at a high dosage. The dosage was twice that I had previously been given. In less than a week, I was up 30 lbs.  Last year, I had a severe sinus infection, and after begging my GP to NEVER give me that steroid again, I had no other option. She only gave me enough to reduce the inflammation in my head that was causing migraines, and that was for three days. It wasn't until 13 months later that I could even see that the scale wasn't still creeping upward.

Arrogance comes in many forms. The most caustic is when a medical professional- a nurse, a GP, and even a desk billing assistant who wasn't that thin to begin with, say, "You know, you have to be eating more than you think you are." NEVER in my wildest days would I ever comment on another person's size. Why? How am I to know what that person did to gain? Maybe it's a tumor of the pituitary. Maybe it was cellulitis. Maybe someone has severe depression. Or maybe they have taken a single dose of Gabapentin, and had edema as a reaction. NO one has the answer to what causes ALL of our weight gain. Food isn't it, and to assume it is couldn't be anymore arrogant or selfish. Unless you're living my life, you can't have my answers, nor can I have yours. BUT we can educate others to how wrong they are or can be.

Since the first week of February, I have been on a pre-packaged food weight control service. I won't say their name, but it rhymes with Sutra Nystem. I am not learning anything new on the program. I haven't really changed my caloric intake all that much. In fact, I'm eating at least one full meal more a day, and about 300 calories more than I have daily for the last six years. This exact program didn't work for me before- five months on it and I lost only 6 pounds in total. But this year, I had far fewer medications to contend with, and only three claim to offer weight gain as a side effect. Another difference is that my mobillity has improved thanks to mild weather, and I'm able to do a little more exercising. Secondary, I am drinking about three more glasses of water a day.

The exercises that I'm able to do aren't huge. I can move my arms fairly easily, as long as my shoulders don't dislocate. If I stand up too long, my tailbone, T3, and L3 all sublux, and the pain becomes unbearable. The left hip, that would ocassionaly slide out of the socket now is a permanent issue, both with bone spurs, and a hairline crack. My palms now dislocate several small bones. Pain is a massive part of my day, and that is only getting worse. The mobility improvements are because my general pain management has been better. The Wii is my morning ritual, now. I used the Dance programs, and I discovered ExerBeat. Using low to no impact I am able to move enough to sweat out quite a bit of pounds.

Despite the doctors' assumptions that I'm eating too much- Despite the doctors assumption that my meds only could possibly put on just a few pounds- Despite the increase of food intake- despite ALL of this, I've lost 20lbs in 6 weeks. The logic isn't there, according to the medical staff. I should have gained another 10 lbs. My blood tests don't show a single change. Not one. 

The only answer is that I'm taking less of the meds that have the weight gain as a side effect. Less medication may mean that I'm going to have a longer battle with some of my illnesses, but if I weigh less, I will have fewer issues to begin with. Give me another six weeks, and let's see how many MORE doctors I can annoy.