I Am Rebelling

Sometimes I need to let my inner rebel out and stop being such a good patient. I usually try to be a good patient (and go to my appointments, take my meds as prescribed, talk to my doctors honestly and generally do what they want me to). But not right now.

Last fall I was told I have sleep apnea and my doctors want me to have a CPAP machine for sleeping. I got my CPAP machine and hate it. I can't stand having anything on my face while I sleep. I am on my second mask and still cannot deal with it. I wake up and want to rip it off my face. If I sleep with the mask on, I don't ever feel rested and have the weirdest dreams.

I went back to my NP for the sleep department yesterday to talk about how I am doing with my (damn) CPAP machine. She said that because of the problems I am having, I could go to a plastic surgeon and they would do some kind of 'adjustment' and then I wouldn't need a machine. (The idea of any kind of surgery like that makes my skin crawl.) Since I have rheumatoid arthritis, no one wants to operate on me because I will not heal well. So we nixed that idea.

My next step is to go see the sleep clinic for CPAP mask for desensitization therapy to get used to the (damn) mask. I am not sure this is going to work for me. I have already tried everything from taking naps with the mask, wearing it when not trying to sleep and just resting, but its not working.

If I fall asleep with it, I end up taking it off shortly afterward because I can't sleep with it. And the whole point of a CPAP machine is to sleep better. I haven't slept better with it at all. And I got it at the end of January.

This is a long way of saying that, while I am willing to actually try a little more to get used to the (damn) mask, I am running out of patience and am not going to try that hard based on two months of treatment so far. Frankly, I do not expect the machine to work for me at all. So my inner rebel is saying, while I will give it a try, I am done making a giant effort.

The (damn) mask has been hanging on the back of the bathroom door for a couple of weeks. It is staying there until they explain the desensitivity therapy to me and I get to try it.

I know apnea leaves to all sorts of issues including fatigue, sleepiness, weight gain, snoring, etc. I also know that I really hate the (damn) mask.

Its like being back in chemo

I had no idea until well after I had chemo for breast cancer that chemo drugs are used for treating other illnesses. I have a friend with MS who has had chemo infusions to treat her illness.

Now I am on a chemo drug, Methotrexate, to treat my RA. It is primarily used to treat cancers as well as to treat RA or psoriasis.

I am told to avoid sick people and crowds, watch for infections, eat healthy, and cut back on drinking alcohol. Doesn't that sound like being back in chemo? I think I got these same warnings with chemo infusions.

Now its just an injection once a week. But I also have to take high doses of folic acid to reduce liver damage.

Blah, blah, blah. These warnings just annoy me at this point. My mother was on methotrexate orally for about 20 years. I refuse to live for 20 years and change my life for that long. I want to enjoy my life. I am NOT going to avoid crowds. I never did and I'm not going to now. Call me a rebel.

I really just want my life back. Sigh.

My inner rebel is showing

I try to be a good patient. Really I do. I know I also can be trying. But I do believe in the importance of being a good patient. I don't know what the real definition of being a good patient is but these are my thoughts:

• Showing up to all appointments, on time even
• Taking medications as directed, not skipping doses.
• Doing the follow up - whether PT, tests, etc
• Heeding doctors orders - not drinking, eating right, exercise, etc

I don't think its that complicated but I know there are people who do not.

Many years ago I was told by my doctors my first cancer was under control but I should continue to take care of myself, blah, blah, blah. After some thought I decided that while I wouldn't 'play in traffic', I was going to enjoy myself. So I became a good patient and did what I was supposed to and went to doctor appointments and took my medication regularly.

Through all my medical stuff, I have continued to be a good patient all these years.

But my inner rebel is showing up. I look at my pill box and think 'what if I didn't take any of them? Would I implode or something?' Sometimes I am sick of being sick and being good. I want to take a vacation from everything.

I have the urge to do something crazy....  ride a real roller coaster instead of the eternal medical roller coaster. I am sure it would make my back  hurt for days but it would be fun.

But I dont want to!

What the hell is that nurse in Maine thinking? Okay, she went ot Africa and treated patients with Ebola. She came home and was treated horribly and was stuck in an isolation tent in a hospital parking lot. Finally she was allowed to go home. Officials want her to stay in home confinement. Instead she went for a bike ride.

I mean really. She tested negative for Ebola but it can take 21 days to incubate so she still may be infected. She is not cooperating.

She isn't some kind of God who can tell if she has Ebola or not. She is a regular human being with nursing training. Ask the doctor in New York who rode the subway thinking he wouldn't spread Ebola.

Can we please start to be rational about this?

If you are at risk, just returned from treating Ebola patients in West Africa, do you mind cooperating and staying isolated for 21 days to be sure? There aren't a lot of good cures for this disease.
If you are running a fever and you did just return from West Africa, call your doctor for instructions and don't go wandering around the city until you find a crowded emergency room to treat you.

Ebola is a real problem and is on the verge of becoming a disaster. With a little bit of cooperation by all involved, it can more easily be controlled and contained. Grow up, chill out and cooperate, please!

Being rebellious

We all have the desire to run away and join the circus or drop everything and take the day off for fishing/skiing/golf/shopping. I usually go from required space to required space and not whine too much. My life is focused on these places: my job, my house, the hospital for doctor appointments, and the gym with side trips to the grocery store, see my parents, and occasional other events.

Recently I have been feeling over tied to my house and the hospital. I have been stuck at home because of the weather and car problems. I have been at the hospital too DAMN often recently.

On Tuesday morning I have a doctor appointment - where I break in a new doctor - and on Thursday I have a dentist appointment and get some fillings done. I really do not want to have any medical appointments this week or any time soon. Unfortunately the doctor on Monday should probably turn into additional appointments that will give me some relief in some areas.

Between those appointments and a few other obligations I will squish in my job and hope there are no more DAMN snow storms to keep me stuck at home.

What I really want to do is be irresponsible and do something fun. Today we are going out to a fancy brunch for a belated Valentine's. I feel like all we have done this weekend is eat. Tomorrow we hope to retrieve the car from where it broke down on Friday and have no other plans. My inner rebel allows me to think of irresponsible things to do to get outside.

This may include going to the beach. Yes we just had several snow storms back to back but I really could use a walk on the beach. It is not covered by snow because the tide removes it. But the tides are wrong so I need to rethink that. Or I can take my dilapidated body outside and go snow shoeing which invariably leads to pain and whininess.

My inner rebel is going to get me in some kind of trouble with my self I can tell. I'll rebel and do something I really shouldn't and then pay the price with pain and whininess. But I need to do something!

My inner rebel

I am being a rebel. A rebellious patient indeed. First of all let me state I am taking all my medications properly and know better than to miss any of them - or my body might implode or something.

I have always been a fan of coloring outside the lines. After the first cancer diagnosis I had to relearn to enjoy life but not play in traffic. Now I am sick of being a 'good' patient. My inner rebel needs to kick in for a bit.

So I am rebelling. I am debating which doctor appointments I can/should cancel. I mean I still have doctors that I wonder why I am still seeing. I might just sneakily cancel them and see if anyone notices. I mean why am I still seeing my radiation oncologist?

I know its part of a scheme by the hospital to make sure their cancer patients get seen regularly. Insurance will cover the visits to a radiation oncologist, medical oncologist, surgeon annually. So the hospital spaces them out through out the year to make sure that combined with your PCP you see a doctor every three months. I'm thinking every four months is fine with me.

I am probably not eating enough vegetables. I am probably drinking too much wine. I am stretching myself too thin regularly. But I would rather not go to the doctor and spending my time and money doing other things.

So my inner rebel is allowing me to do this and not feel any guilt.

Doctors getting on the cost bandwagon

I have long been whined commented on the high price of medications. I find the high price of new medications combined with the laughable rationale given by the drug manufacturers ridiculous.

Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.

A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.

"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.

They suggested that charging a high price for a medicine needed to keep someone alive is profiteering, akin to jacking up the prices of essential goods after a natural disaster."

I like the word 'profiteering' for this price gouging. I mean, how do you justify these prices? If you do a cost benefit analysis as a typical business model, the company pays researchers for years to come up with the drugs. If you say 10 researchers at $100,000 (for easy math) and ten assistant researchers at $50,000 plus $500,000 in equipment for ten years, that would work out to $2 million a year or $20 million total. I know my math is not perfect but you get the idea. Even if I am off by a scale of 10 and the costs are $200 million for ten years of research. 

Then take a drug that costs $10,000 per month being taken by 5000 patients that is (pause while I find a calculator) $50 million per month in income. Or in four measly months, they have made back their $200 million. 

And even if my costs are off by another factor of ten and we are looking at total costs of $2 billion, they would still get their money back in forty months, or just over three years. Or if the drug is taken by 10,000 patients, they would get their money back in 20 months, or just over 1.5 years.

But I have digressed WAY OFF track. My point is I can't find any justification for the pharma industry's claims of high costs. And now the doctors are claiming them to be profiteering as well. Maybe we need a congressional inquiry - no that would be all sorts of waste of government dollars - but we do need something to make this price gouging end.

Pinkification is pissing people off

Try saying that three times fast... (I don't use usually use the term pissing people off but it fits here and I apologize if you find it offensive). I wasn't going to write about pinkification any more as it pisses me off. But then I read the morning paper and there was a nice article explaining how it got to where it is and  why it makes people so mad. 20 years ago Komen started the pink ribbon idea at an event in New York and it did great things. We are all now aware of breast cancer, especially those of us who were lucky enough to get it.

So pinkification was started in 1991 with the first pink ribbons distributed. Then it has evolved into all sorts of pinked things - pink trash cans, pink guns, pink KFC baskets, pink perfume (made with known carcinogens and sold by Komen), and pink football helmets. Pinkification isn't helping anymore. If it pisses you off, you are not alone, there is even a book about it, Pink Ribbon Inc.

I think its time to let loose my inner rebel and come up with anti-pinkification and read more from Breast Cancer Action  and Think Before You Pink.