Saturday, January 31, 2015

Finally Myriad Genetics has given up

Since 2013's Supreme Court ruling that Myriad Genetics and any other company cannot patent any natural occurring DNA, Myriad has been busy suing other companies over this same issue. Why? Well they do not want to give up their $9,000,000/month gravy train. Finally, this appears to be over.

Its about time.

I have no idea why they insisted on persisting their illegal monopoly but I am glad it is over.

I do hope this clears the way or more research on gene testing and to open up the field. My thoughts are that more research could lead to a better understanding on the differences in the BRCA genes and better explain why some people with the genes do get breast and ovarian cancer and some do not.

I am not educated enough on the BRCA genes to know why some people with the gene do get the cancers and some don't. I would think that if you have the gene you would get cancer and think that there must be more differentiation to explain why only some do and some don't. Do I make sense? Probably not so let me try again.

To my uneducated brain, I would think if you have a gene you would end up with whatever that trait is. For example, if you have the blue eyes gene, you have blue eyes. Right? So if you have one of the BRCA genes, why are you only at high risk of getting breast and/or ovarian cancer? Wouldn't it make sense that if you have the gene you are going to have the trait? Therefore I think that now more research can be done to show there is greater differentiation in the genes to explain why not all with the gene get cancer.

Okay, I know sometimes I am rambling and don't make sense.... But I hope that I do this time.

Friday, January 30, 2015

Brainless people

I strongly believe that everyone's brains disintegrated when faced with two feet or more of snow. I had to run a bunch of errands yesterday and numerous times, people just came to a stop in the middle of the road. No turn indicators, nothing. Just a complete stop.

Now that the streets are a bit on the skinny side, there is no where to go but wait behind them. Until a fire truck comes blazing away in the opposite direction when we all drove into the snow banks.

I have no idea why this happened but it did. Several times. Enough to drive me crazy. I had a lovely day otherwise. I got a crown finished at the dentist and was told I have oral sloughing where the inside of your mouth is slowly disintegrating. The dentist thought it was due to some ingredient in my dental care products. But not for me.

A little Webmd search lead me to believe it could be caused my my RA treatment. Later I ended up at my rheumatologist where we talked about my feet and my lungs. My hands and feet are better in the terms of less active disease.

But we talked about the weird sloughing which lead to increased folic acid which led to new prescriptions which led to not being refilled which led to 20 minutes on the phone with the specialty pharmacy to find out it will now cost $35 for a one month supply and then $95 for a three month supply for 3 pills a week. It used to cost less than $5 for a four month supply. I love health insurance. It is clearly run by brainless people.

But I digress. There was an extreme lack of brain usage on the part of many people during our recent blizzard. The headline is the 61 year old woman who attacked her neighbor with a snow blower and is out on bail. Apparently all her neighbors have restraining orders against her.

I finished my day and was exhausted. I got up this morning and immediately went back to bed. I rolled out of bed at 11am. Obviously I was exhausted after dealing with brainless people all day.

Thursday, January 29, 2015

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.

Wednesday, January 28, 2015

How to be a happy cancer person

I found this list of things happy cancer people do not give a rat's a$$ about. I completely agree. 
  1. They don't care for letting drama into their life.
    I don't need your drama. I have enough of my own.
  2. They don't care for sweating the small stuff.
    Small stuff doesn't count when you are coping with cancer. 
  3. They don't care for statistics.
    They are just numbers. I am a person, not a number.
  4. They don't care for passing up opportunities.
    I am happy to leap for the opportunity to travel, try something new
  5. They don't care for other people's expectations.
    Why should what you think matter? I don't really care.
  6. They don't care for high maintenance relationships. 
    See drama above.
  7. They don't care for jeopardizing their health with bad habits.
    I think after cancer we all take a look at our habits and do our best to improve them so we can help keep cancer away.
  8. They don't care for rejecting help from loved ones.
    If there is one thing we learn is to accept help from others when offered. Coping with cancer can offer a dose of humility. When chemo makes you too sick to keep food in your stomach, some one else helping you cope with life is a major help.
  9. They don't care for worrying about the future.
    My one big hope is to have a future.
  10. They don't care for living in denial.
    Learning to cope with a cancer diagnosis takes you through the five step journey to get to acceptance. Denial is a step to get through and not live in.
  11. They don't care for keeping up with the Joneses.
    I'm paying medical bills so I really do not care if you bought a new car or a fancy purse. If its a new pair of shoes, that might be another story.
  12. They don't care for buckling under the fear of the unknown.
    What is unknown is will my cancer come back. I can't fear it or succumb to it. Its like terrorism, you can't let fear of it control your life.
  13. They don't care for other people's "sob stories."
    Again see drama above.
  14. They don't care for focusing on the negative.
    Ibidem or see drama above.
  15. They don't care for not living life to the fullest.
    Enjoy what you have and enjoy yourself as you do so.
Could all of this lead to that elusive new normal? I don't know. But I know it describes me fairly well.

Tuesday, January 27, 2015

Emotional Support when Facing A Cancer or Other Nasty Diagnosis


Repeat after me:

"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"

And again.

You could have a rare disease, such as being one of only 8 people world wide with the same diagnosis. But I bet there are other people with a similar disease from a non-medical type of view. You are not the only person with a cancer or a genetic disease or whatever you have. Unfortunately there are other people out there who are dealing with their medical diagnosis.

At my second cancer diagnosis, I didn't sit back. I took action. Within 24 hours of my diagnosis, I started my blog to keep people posted on my health. Before my first surgery, I joined a support group. Somewhere in there I started tweeting and joining several online communities for additional support. At the end of active treatment, when many people fall apart because your medical team says 'see you in six months', I found a therapist. I was determined not to let cancer suck away years of my life again.

I cannot say enough about the benefits of support groups. When I joined, I was told that it was proven about the benefits of them. People who actively seek out emotional support do better with their treatment. They have been shown to  handle treatment better and have improved outcomes. Check out all these articles referenced here to show studies demonstrating this.

If you are emotionally miserable with your medical issues, find support. These days it can be available in online communities but also in person. I recommend you make the effort to get to an in person group at least  periodically and make new friends with those who are there. You will feel better.

I have numerous cancer friends. These are friends who I would not have met if I didn't have cancer. We help each other with the bumps in the road. You can do this too.

Yes every cancer diagnosis is different even if you basically have the same disease. But the medical roller coaster is pretty much the same for all.

Monday, January 26, 2015

Thoughts on tanning

In yesterday's post, I mentioned that I will work on getting a tan while on vacation. I went back and reread yesterday's before writing today's and that kind of leaped out at me.

Tanning is not considered a healthy activity. It might cause wrinkles and skin cancer decades later. I have never fake baked, use spray on tans or been to a tanning salon. But I like a little color on my pale, look like I live under a rock, natural skin pallor. I also burn quite easily.

The best tan I have ever had in my life was when I spent a week in the Bahamas, snorkeling, water skiing, and moving around constantly. I wore sunscreen every day and never sat in the sun and didn't burn at all. But I was an awesome light tan color by the time I left. I have never had such a good even tan in my life.

So now, I do not expect myself to be able to move around as constantly, I will wear sun screen and move around as much as I can so I can tan lightly. But I am more in wrinkle avoidance than skin cancer avoidance mode.

Cancer makes you ask 'how long will I live' and 'how important are those long term goals'. Retirement savings, and other goals, become less significant after a cancer diagnosis, but then as you feel better, time passes since diagnosis, and the medical bills subside, they then return to prominence in your life. Priorities change as we age and cope with the medical disasters thrown our way.

My one chemo summer regret is that I didn't work on my tan more to prevent that lovely 'chemo pallor'. If you are a stage IV cancer person, I encourage you to get a 'healthy' tan.

Sunday, January 25, 2015

Planning and travels

As my health deteriorates and we age, our planning for travel has changed. In the past, we would look for many adventures to do on our travels. The more remote the better because we could always tramp off in the woods for hours at the time.

I am trying to plan vacations for this year for us. Our first trip will take us to an island in Florida for our anniversary. This was chose because it is on the ocean and I can always find a lounge chair to spend hours gazing at the blue sea if I am not  up to much more. My husband can go bike riding while I work on my tan. Also it is walking distance to the beach so I can always head back for a nap on a comfy bed if necessary (if it doesn't involve loose sand).

Our next trip is a family vacation. We will have a bedroom which requires as few stairs as my octogenarian parents. And I can always admire the view from the top floor living room with a wrap around deck if I am not up to going off on excursions with the rest of the family.

Then we are planning a trip for just the two of us in September. Our requirements are not many:
  • wifi
  • queen or king size bed
  • waterfront with lounge chairs to view it from
We haven't figured out what state or country we are going to, never mind what else we are going to do. But we need the creature comforts. So that I can take it easy and get all my rest in. Actually so I can recover after adventures and not waste a whole day of vacation sitting around because I did too much the day before.

My goal is not to compromise on having fun but just learn to live with less fun than previously.

Saturday, January 24, 2015

Learning to live like a healthy person

Here is a goal for me for the year: Learn to live like a healthy person. It doesn't sound that complicated but it is.

Here's a brief recap of me in case you forgot any ailments:
  • 2 cancers
  • 8 surgeries for cancer and hysterectomy, bad knee, gall bladder
  • Rheumatoid arthritis, fibromyalgia, degenerating disks in my back, left arm lymphedema 
  • Depression and anxiety (I feel I am entitled based on the other bullets)
 I feel like I might be missing something but that gives you the basic idea of with what I have to cope (is that grammatically correct?). I can't remember because of chemobrain/fibro fog. See I knew I missed something!

So to think like a healthy person:
  1. I can't let myself think that any ache and pain is a new cancer.
  2. Nor can I let myself attribute any new ache or pain is an existing ailment or a side effect of a medication.
I need to put all of this aside and relearn to think like a healthy person.
  • An cold needs to follow the three day rule - if it doesn't improve in three days, call the doctor.
  • An ache or pain needs to do follow the five day rule - if it doesn't improve in five days, call the doctor.
  • Dripping blood still needs to go to the ER... well maybe, it depends on how much blood.
If I can stop hyper-focusing on my health and learn to think 'if I was a healthy person, what would I do' every time, I think I can get more balance back into my life. A nice goal in life.

Friday, January 23, 2015

My insides and retraining my brain

Do you ever give much thought to your insides? I mean your gut basically. My insides have been feeling out of whack for the past few weeks. I have been blaming my new rheumatoid medication which can have the lovely side effect of nausea.

Last night, we went to a comedy show in Boston, something we never do. I did research and found an affordable parking garage near the venue so we could just zip in and zip out. It was easy and convenient and one of the most vertical parking garages I have ever seen. It had 11 levels. Each level was probably 15 spaces long and 8 spaces wide with skinny little driving lanes - typical Boston.

When we left the concert, I was trying to get my phone turned on so I could figure out our way out of the maze of downtown Boston full of one way streets. My husband drove down the 6 tight floors of four turns each down to ground level. I felt nauseous after two minutes of that. My insides felt all shaken up.

We drove home and went to bed. My insides do not feel that great today either. Obviously it must be the car ride.

But with many ailments under my belt, so to speak, I am quick to blame medication so my brain doesn't have a chance to jump to any other medical roller coasters. I can live with that.

After cancer, our brains start to take every chance they can to head for the highway to hell. We need to outsmart them and divert them to some thing much less scary. I keep focusing on retraining my brain so I keep my sanity.

Thursday, January 22, 2015

I'm still reading the news

I'm not glued to the health news in the search for the cure for cancer, and my other ailments, anymore. I had to take that step for my own sanity. But I still read the news.

For some reason, I am very intrigued by the surge in measles cases in California where unvaccinated students are being told to stay home. I just don't understand why some parents never got their children vaccinated. Why, why, why? The UK doctor who said that vaccines contributed to autism or whatever has since been debunked.

One of the parents of a child who is forced out of school for 21 days said that if any students do get measles during the forced home stay, her daughter will be forced to stay home for another 21 days. So the suspension could go on and on. And her daughter can't get a vaccine for another 30 days because she was exposed to the disease. So this could go on for months.

I never understood this whole anti-vaccination stuff anyway. I know there are people who do not believe in vaccinations or flu shots. But if you don't get a shot you can't expect that there won't be a price to pay. You could get the flu or measles or whatever, you might have to miss work or school, and people might want to avoid you.

To me this is the same as for anyone who doesn't follow traditional cancer or other treatment and expect their insurance company to continue to cover all tests and treatments.

If you don't go with the flow, you may find yourself left behind.

Wednesday, January 21, 2015

Uncertainty

I have been watching the ABC Family show 'Chasing Life' since last summer. I don't really understand how they planned the season because it started maybe in June and ran for most of the summer and since then they had an episode in December and one in January. Finally, season one is over, I think. I did a search and learned that it had been renewed for a second season. Maybe that's why they held off on the last episodes of season one until they knew if they would have a second season or not.

Anyway, I watched the last episode night where I learned (spoiler alert) that April, the main character, is in remission with a 60% chance of the disease returning. See, with cancer there are no guarantees. It made me think.

If you have cancer, you analyze the statistics on recurrence and death until you are blue in the face. Then you discuss and dissect them with anyone you can. You tell yourself you are in the 'good' part of the percentages as in 'with a 70% fatality rate in the first five years'. You are clearly part of the 30% because you couldn't possibly be part of the 70%.

The only thing with cancer is that you know there are no guarantees. You can tell yourself anything you want but deep down you know the only thing that is certain is the 'uncertainty' of a cancer diagnosis.

Tuesday, January 20, 2015

Stage 0 thoughts

I like to think of a stage 0 cancer as a dodged bullet. My husband is a stage 0 cancer person. He had a malignant polyp removed from his colon a few years back.

Yesterday, he had a colonoscopy (which went just fine, thanks for asking) and the nurse in charge of his prep, walked up to him and said 'you had colon cancer?' I almost replied no for him but kept my mouth zipped as he was the patient.. He said yes as he had his evil polyp.

I was kind of jolted by the question about him having cancer. It was a bit of a surprise. But yes I do agree it was cancer. I think any kind of cancer sucks. But stage 0 cancer treatment is usually just a small surgery of some sort to remove the diseased area.

There is some discussion on DCIS if it is over treated - does it really require surgery? Is it over treated? According to the latest figures from the ACS, they expect 60,000 out of 240,000 cases of breast cancer diagnosed in 2015 will be stage 0 or DCIS. That's 25% of all cases. So if screening keeps us from finding cancers before they have progressed, more power to them.

My thought is if its a cancer, take it out to preventing from it eventually causing the death of the patient.And maybe I am just hyper focused on all my ailments and don't think about his as much.

Monday, January 19, 2015

Other people's health

Sometimes my health does not take center stage in our house. Today is one of them. My husband is having a colonoscopy. He had a 'bad' one a few years back and now is on every three years. He spent a lovely afternoon and evening making little trips to the bathroom. But now he is sleeping and we will leave in an hour. I will bring a peanut butter sandwich he can snack on the way home.

Later today I will also call the vet. The cat has been looking a  little skinnier than usual recently. He did celebrate his 20th birthday (with extra treats) back in November. This is the equivalent of dealing with a 110 year old so we know he will not be around forever. However recently he has been exhibiting some fairly dire symptoms.

We are hoping for the best but not very optimistic. He was my chemo buddy. My husband got him shortly before we first met in 2002. He is an important member of the family.

Today I will be the caregiver for them both.

Sunday, January 18, 2015

Ignore all the headlines

I think I spend too much time reading the headlines, especially in the category of health news. If I believed them:
  • I will get the flu because it is rampant across the country
  • The cure for many things can be found in some obscure arctic bacteria
  • Booze is so bad for you, you could poison yourself easily.
  • Pain killers are now the street drug of choice.
  • Our phones are suffocating us.
  • Cancer is due to back luck.
  • The cure for some obscure form of cancer will be found shortly.
I am so done with all that. I am going to be healthier this year and am promising myself, I will stop  bouncing through the news headlines. We know Dr. Google doesn't know anything. So we should also assume that Dr Internet knows nothing.

Emotionally, grabbing at headlines can be very stressful. The yo-yo effect of the constant ups and downs are significant. Its sort of like scanxiety at a lesser level. I need to take more control of more levels of my life, as I have blogged about before, and this is just another one.

With bad medical diagnoses, we tend to grab at straws looking for the magic cure. Then we develop the bad habit of following anything we can find - usually ending at disappointment - and keep repeating the process because it offered us a small glimmer of hope however fleeting.

So I am going to stop reading the over-hyped headlines that offer false hope and start looking for real information. I can't live on false hopes and the ensuing roller coaster.

Saturday, January 17, 2015

I love this time of year

There is so much optimism in the health news this time of year (not so much the rest of the news especially with the ongoing European terrorism).  What I am referring to is the deluge of advice on flatten belly fat, eat healthier, and, my favorite,  how to really lose weight.

As with everything on the internet, we must take these with a grain of salt (and possibly a large margarita as well). Eating healthier does include eating more vegetables but I do that. I mean how many vegetables do I need in a day? And will it make all my ailments go away? They are what contribute to my unhealthy body. Because of my ailments, I spend too much time sitting on my butt and too little time hiking, skiing, snow shoeing, walking, etc.

I need real advice on how to be healthier and this is what I have come up with for me this January.
  1. Attempt to go for a walk at least once a week. If I can do that, I can increase my weekly exercise quota. But its not really a reality. Some weeks I just cannot add in a walk because I feel crappy so much of the time.
  2. Stop eating the crap at work. 
I work in a small office 15-18 hours/3 days a week. It is family run and wonderful. But I have never worked in an office with so much junk food, even when I worked for a candy company (Fanny Farmer Candy Shops) and was responsible for all the samples for photo shoots. Even the owners joke about the office 10 lb weight increase.

This week for example, the office manager had a sugar craving and went to the bakery next door and came back with an entire blueberry coffee cake (and a giant cookie for herself). Plus the (giant warehouse store containers of) brownies and cream puffs someone else brought in .

I think if I can attain those two goals, I will be a thinner happier person. I did breakdown yesterday and had a piece of coffee cake, left over Chex mix, and some goldfish. But in avoiding the crap for a couple weeks, the scale had started to move in the right direction.

So I am going to skip the healthy news this year, unless a cure for cancer, fibromyalgia, and rheumatoid arthritis are announced, and stop eating the junk food at work.

Friday, January 16, 2015

Ailment analysis - pre and post cancer

Okay,y I admit I have been feeling pretty crappy off and on for the past few weeks. I don't know what it is. If I thought it was diagnosable, I might actually call my doctor. But as it is just a blahness feeling with nothing really specific, I am not doing anything.

But it does allow me to think about the comparison between a healthy-ish person, a cancer-ish person, and an achy-painy-ish person (with RA and fibromyalgia) and what are the differences in my reactions.

SymptomHealthy-ishCancer-ishAchy-Painy-ish
Sneezing/Sniffling/CoughingWait and see if it goes away and check out the cold medicine aisle.Wait and see if it goes away.It better not turn into pneumonia.
OwiesWait and see if it goes away, then call doctor, maybe, eventually.Is there a lump? Maybe its a tumor!!Is there a lump? Probably just an RA nodule. Ignore it.
Lumps and BumpsIgnore itIs it where  a tumor might possibly be?Definitely just an RA nodule. Ignore it.
HeadacheTake an aspirinIs it a brain tumor? MRI stat.Just another achy-pain.
BlahnessTake some vitamins and nap more.Is my blood work okay? If so, ignore it.Blood work checked last week and again next week, I can't be that sick.
DizzinessMust be dehydrated, drink more water.Is it a brain tumor?
MRI stat!
Just part of my new lifestyle.
Dripping bloodBand aid, butterfly or ER?Band aid or butterfly?Band aid or butterfly?
It takes me a lot to call the doctor these days. The more ailments I have the less likely I am to call the doctor.

I have been feeling blah but right now I am getting my blood work checked every two weeks because I added a new prescription for my RA and I see my rheumatologist in two weeks. I also know if I really want to, I can get into my primary care's office on the same day.

I don't wake up each day expecting to feel well. It can be a rare occurrence that I feel great. So these days, I'll just ignore most things.

Thursday, January 15, 2015

Expanding my life

I have a job now where I work 15-18 hours/week. I have actually had it for what is closing in on six years. I really like my job except for one issue. The commute. 20+ miles on infamous Boston are highways with a solid selection of school buses on both ends. I have told my boss the only thing I don't really like about it is the commute so he could feel free to pick up and move the company ten miles south and I would be happier.

I used to work a second job where I worked closer to 30-35 hours/week total. After RA and fibromyalgia combined with evenings and weekends required for the second job, I had to leave it. I sometimes wonder if I found a job which was closer and flexible could I work more hours.

So periodically I take a look at local job openings. I actually applied and interviewed for one last fall which was one mile from home, walking distance for me on a good day. Then they decided they wanted someone full time instead of part time so that was that.

Yesterday I saw a job posting at a non-profit who's cause is close to my heart but its 20-30 hours/week and requires one day a week in the office downtown. I am not sure I am ready or able to commit to a new job which requires one day a week in the city and many more hours than I currently am working.

Then this morning I am more intrigued. I found another job that is 10 hours/week and looks that it is pretty remote. What if I could add a second job which is ten hours/week and has flexibility and does not require regular office time? Could I do it? Could I expand my life and my paycheck to take on another job? Sometimes I feel I spend too much time at home watching bad TV.

This requires more thought. And hope that my health will cooperate as well.

Wednesday, January 14, 2015

Did I say it was a bad week?

Last week I had an exceptionally bad week in several different ways. It was just your basic cluster of everything coming together to remind me of how life with my health can take its twists and turns. Here is a brief outline:
  • Monday at work, where I am also the IT person, we had a complete hard drive failure on our data computer to the point that we had to get new hardware and start over from scratch. It just meant a longer and stressful day for me.
  • Tuesday at work, I had to deal with the outside hardware people to fix the computer. And the alarm guy was there bleeding the sprinkler system or something that entailed of spraying water outside the building on a 15 degree day (I had to move my car) away from the spray. Later it snowed on top of the spray that turned to ice and I fell on my knee because I couldn't see the ice under the snow which jolted my body and made my knee and my back hurt for days.
  • Wednesday my back and knee were very sore from my fall and cancelled my hair appointment and skipped the gym because I felt that bad but I made it through my full 6 hour work day.
  • Thursday I felt okay and went to the gym. Then about 2pm I couldn't keep my eyes open and took a nap. I woke up and felt horrible couldn't talk, cancelled all my appointments except my pain doctor for Friday.
  • Friday I felt a little better but stayed home except for my one appointment where I had a series of trigger point injections on my back (they still needles into the sore spots). 

So in one week I fell, had a 24 hour cold, exceptional work stress, lots of aches and pains, and had to spend a day off my feet because of my health. Did I say it was a bad week?

Its sort of a normal week for me. My health takes a dominant role in what I do. But I try.

This week is slightly better but I didn't sleep well last night so I couldn't wake up this morning. The cat insisted on sitting on my shoulder with his paws digging into my sore spots and woke me up at 230. I think I got back to sleep around 4 but had some very weird dreams.... I have to go into a conference in town this morning on the subway. I almost bailed but I really want to go to it. I may need a nap after but I hope to go to the gym.

Nothing like being 'healthy' to make me sit on my butt and watch bad TV to recover from normal life.

PS I do not count my fall on the snow covered ice as related to my ailments. It could have happened to anyone.

Tuesday, January 13, 2015

A Novel Idea

Let's ask the patients what they want. In the past, funders for the biotech world never thought that patient's opinions matter. I mean really, what possibly could the patient's opinions matter in funding start ups in biotech?

Now funders are asking patients about their opinions as well as on sales and marketing of a drug.

Think about it for a moment, the car industry spends millions upon millions on customer surveys. How else would they know that the number of cup holders is so important to minivan moms? Its an age old theory to ask the end users of a product what they think  - hence Amazon reviews. But it took a long time to get to biotech.

I have a bunch of opinions for on my medications as well:
  • Stop making giant pills. Squish everything down into little bitty ones that are easier to swallow. But make them bright colored so you can find them if you drop them on the floor.
  • No medications should have the side effect of 'may cause weight gain'. They should all suppress your appetite
  • About those bubble packs where you have to press the pill through the foil? No, no, no, a thousand times no. They make my hands hurt. 
  • And the stretchy foil impossible to break plastic that tops vitamin and pill bottles? Outta here. They need to be the nice easy paper ones that I can rip off with out a sharp instrument.
Okay? Thanks. Bye.


Monday, January 12, 2015

Changes in big pharma

I guess this week there is some sort of conference in San Francisco for big pharma so there is new news (instead of just rehashed old news). The industry is now facing a problem.

"“...Pricing pressures are very real. Our health care delivery system can’t afford to spend hundreds of millions of dollars to extend life for a few weeks or a few months.”

The challenge for drug makers, which have long operated on the assumption they could charge whatever the market would bear, will be to produce cures and breakthroughs in medicine that can save money for insurers and government payers by keeping patients healthy.

“What we have to do is to get the focus on the value of our drugs for patients rather than the cost...”"

What a novel idea. And

"“More and more, companies are factoring in the economics of a therapy,” said Terry McGuire, founding partner of Polaris Partners, a Boston venture capital firm that bankrolls startups. “Just a few years ago there was a feeling that if we produced a medicine, people would pay for it. Now we have to figure out the likely reimbursement and build a strategy around it.”"

Even better.  Historically the pharma companies claimed that their big prices were due to the high costs of developing new drugs and that only a small percentage made it through to actual production. But perhaps they are finally realizing that this is not a sustainable business proposition and they are taking a page out of any other manufacturer's rule book - if you can't make money on it, don't sell it.

More good news is that the new industry trend is to create drugs that provide real breakthroughs instead of merely extending life a few weeks or months. For me this has long been a big issue. New treatments would be created which would cost hundreds of thousands of dollars and the patients would only be around long enough to feel the bite on their wallet but not enjoy much more time alive.

Change could and should provide better and more affordable options for patients.

Sunday, January 11, 2015

Pain management

Last week I went to the pain management doctor - yes I have one of those. I had a plan, a very well thought out plan, for that visit. I knew what I wanted and it worked out. I had a series of trigger point injections which are wonderful for fibromyalgia points. And I am scheduled for a Radio Frequency (RF) treatment on my lumbar spine which won't happen until the beginning of April (darn).

I lost the battle with my insurance company for RF of my right sacroiliac(SI) joint so I am moving on to the next options.The doctor thinks the lumbar RF might also help with my SI pain so we are proceeding with that option next.

This is the doctor who also gives me Tramadol for breakthrough pain. And Butrans pain patches for continual pain relief. (I know this post will get hit by spammers between the title and mentioning those names.) So in addition to signing a release for the trigger point injections, I also had to sign a statement, and check numerous boxes showing that I agreed with each one, on how I agreed not to abuse pain medicine and that I wasn't doctor shopping, hiding, sharing, or stocking up on prescriptions, and several other topics. Apparently this is part of a new law focusing on reducing abuse of pain medicine.

Studies have shown that abuse of pain killers leads to heroin use - which is a much more serious problem. To put it in perspective:

"...accidental prescription drug overdose is now the leading cause of acute preventable death for Americans. Someone dies in this manner every 19 minutes. That is more deaths than from car accidents." 

I had no idea this problem was so prevalent. We have a new governor who successfully ran on a stop pain killer abuse platform.

I am careful with my medications. I don't share them with anyone. I keep them all hidden away in a closet out of sight so that if anyone is in our home, they can't easily see them. I also prefer being on a pain patch than taking regular pain pills. It is a controlled dose that keeps my pain in control. But I also have pills for breakthrough pain - when I have a very bad day.

I do not want to unknowingly contribute to this problem. I have enough pain issues without being part of the problem. I want to focus on managing my pain.

Saturday, January 10, 2015

What if there was no more chemo?

We have heard this one before where doctors do something to your T cells so they kill off the cancer cells. But we have always heard the infamous 'but more research is needed'. Well how about this?



The took a teenager's T cells and engineered them and put them back in his system and now he shows no signs of cancer. I'm all for this type of treatment. Getting rid of the poison part of the slash, poison, burn of traditional cancer treatment.

For more thoughts on medical advances that are blazing the way for the future read this.

Now from the professional cancer patient's take on this. I think it sounds great. But, and there is a big fat 'but' here, this was done on a young, relatively healthy teenager with leukemia. How would that impact me the thyroid/breast cancer with multiple other ailments? Probably not so much. I have not found a single clinical trial for which I would be eligible for any of my ailments. The reason for this is I have so many other ailments, no clinical trial wants me.However I do not think this would be any help to me if I was ever diagnosed with a similar cancer because my immune system is a disaster from rheumatoid and its treatment.

So I am pleased that this advancement has happened and may be blazing the way for 'cures' for some more cancers for some people. But I still don't have the warm fuzzies on what it could do for me.

Friday, January 9, 2015

Why it cant just be a simple cold

I no longer just can have a simple cold. I have the immune system of I don't know what - a jelly bean? It is almost as bad as not having one. It is very suppressed because of my methotrexate for rheumatoid. Monday and Tuesday I mentioned feeling dizzy. Wednesday was Methotrexate day. Thursday afternoon all of a sudden I couldn't keep my eyes open.

I took a nap at 3. Woke up at 6 when my husband came home and cancelled almost all my obligations for today.

I asked a friend who was coming for tea at 11 not to come because I am sure she doesn't want my germs. I cancelled my nail appointment. I cancelled the plumber who was supposed to come today - and he was understandably upset. I will contact him and apologize and reschedule once I am better and can refigure out my schedule.

I did not cancel my back pain doctor appointment because I need to get in to see him so we can figure out what can be done for my back sooner rather than later. This will be my one excursion outside - I have until 2pm to motivate. I do need to get up and go eat something so I can take my next pills without felling nauseous on top of that. Maybe if I eat something and drink an Emergenc-E, I might feel better enough to take a shower.


Maybe some tylenol and mucinex too.

We were going to go out for a walk in our efforts to get healthier this weekend. This is now not going to happen. I am supposed to meet a friend for coffee on Sunday. That probably won't happen as well.

Monday I am supposed to go to work - that may or may not happen.

Why you ask? Because if I get a little cold it can quickly turn into something nasty. A year or so ago, my husband got a brief cold, and I ended up with a double ear infection and had to skip a planned vacation.

And while I am sick, I need to skip my methotrexate injection until I am better which means my RA can start to flare up.  I wish it was just a simple cold.

Thursday, January 8, 2015

My day in the arctic chill

This morning it is a tropical -4F. A lovely morning indeed. I do not need to go to work. I get to stay mostly at home. But I am going to get a crown at the dentist this morning. Which is better? Going to the dentist when its below zero or staying home under a warm pile of blankets. Of course, I have to go out. Damn. I do not do well in cold weather.

I did fall earlier this week on the ice. Today I will wear my really fancy clothes. I have a giant puffy down parka that is rated to 50 below. Then I will strap on my winter hiking boots which are rated to 35 below. When I am done getting my teeth drilled, I get to go pick up a free sewing machine for some new crafts. I hope it isn't heavy because it is being left out for me and there won't be anyone to help me with it.

Finally, I will go purchase an old collapsible sewing table for my new-to-me sewing machine. This table is apparently about 30 lbs. I will leave it in the car until my husband gets home. Then it will be heavy and really cold. 

I posted on Facebook about feeling dizzy (and asked my mother not to read it but she did and commented on it) and the consensus is I should call my doctor about dizziness. I don't really want to but I will. This may mean another trip out into the arctic air again.

I really just want to stay home and play with my sewing machine. I have an idea for new crafts  using a combination of fleece pieces and yarn to crochet the fleece together with the yarn to make infinity scarves. And I can make mittens from fleece and can embroider those with flowers and things to make people think of summer.

That's what I'll do today - think of summer.

Wednesday, January 7, 2015

Cancer treatment decisions

When faced with a cancer diagnosis, there are decisions to be made - surgery, chemotherapy, radiation, oral treatment options, alternative medicine, etc. Doctors do their best to direct their patients toward their preferred options. Most say yes, but some patients say no. Of those patients, some reconsider and later go with their doctor recommendations.

Yes there are stories about people who opted out of treatment and are still alive 20 years later. But there are many other stories of those who refused traditional treatment and succumbed shortly after.

I know of at least one other story right now of a mother and 17 year old daughter, the cancer patient, who have refused treatment and the state of CT has gone after them to legally require them to allow their daughter to have treatment. The pair was last seen in south Texas and it is not sure if they are in Mexico.

I have conflicting feelings with this.
  • I believe that we are all entitled to do what we think is right for our bodies.
  • I strongly oppose any legal authority tell me what I must do in treatment.
  • But I do agree there are some people who believe that modern medicine, whether eastern or western, is bad and will not have anything to do with it.
  • Finally, yes there are idiots out there who will not hear anything they do not want and need to be protected from their own failed logic.
Some medical treatments are not fun. And honestly, no one really wants to have surgery. But if its going to (or I should say 'if it should') save your life, isn't that in your best interest?

Tuesday, January 6, 2015

Being stress free

Stress? Not me! LOLOLOLOL. RFL. According to this article, we need to learn to live with our stressors and become stress free. Its better for us.

What causes stress for me? There are the basics - too fat, money tighter because I can't work as much. Then there is the real stressor - my health. How am I supposed to be stress free with a body which keeps giving me more ailments? The proverbial 'other shoe' drops with a regular frequency.

I would be happy to be stress free. Please just inform my body to cooperate. Thanks.

Monday, January 5, 2015

Taking back my life

Over the past few years, my life has shrunk. There are many things I can no longer do - hiking, biking, camping, skiing, vacuuming. I have decided it is time to take back my life.

I used to go for a daily walk, rarely skipping a day. A habit started years ago. I would walk in the rain and snow and heat and cold.

In the spring of 2007, I was working at a small company near home. I started walking at lunch with a co-worker once or twice a week. I left the job but kept walking weekly with her, through cancer treatment. We would walk the steep hills to keep in shape. We kept going. Some weeks would skip because one of us was traveling or busy, or my back hurt too much.


Two winters ago, she and her husband started spending two months in Utah to ski so we stopped for the time. Last winter she went for her two months in Utah, we walked once after she came back in the spring. Then my back started hurting more, and my hip (bursitis). We haven't walked since.

I have gone for a few walks since then but nothing as regular as I used to. I do go to the gym and do an hour of cardio three times a week as well as weights and stretching. But long walks result in bad effects - including hobbling home and spending a few hours or a day in bed. I find I don't have the stamina for it. My muscles aren't used to walking any more.

I am determined to start going for regular walks again. I do need a day of rest after working out. But I have a plan. A dastardly plan. My husband has no idea what he is in for.

We are going to go for a walk every weekend. We have started already. We went for a walk at a nearby wildlife refuge last weekend. And on Saturday we went for a walk in the wind and cold on the hills around our neighborhood. This coming weekend we will go for another walk.

I want to walk enough so that we can go on hikes again, something we really liked to do. One of our first dates was a hike along the edge of a cliff on western MA where we got hit by a thunderstorm and literally soaked to the skin. I would love to be able to hike like that again. It may take a while but I do want to hike again. I enjoy being out in the woods. Its part of taking back my life.

I am tired of watching things I enjoy slip away. I'm taking back my life. And maybe I'll lose some weight too.

Sunday, January 4, 2015

Standing up to the idiots

Okay I finally have a real resolution for the new year. I feel I can sum it by saying 'standing up to the idiots'. What I mean by this is that I no longer feel the need to politely step aside and keep my mouth shut when idiots try to tell me what to do.

With my health, I get lots of  'advice' on how to 'cure' myself or to rest up so I can participate in an activity. Now I feel the need to stop being polite and to speak up and politely tell them to be quiet. For example, if I have a back procedure, it is not going to cure my back. Its going to relieve some pain for a while. I repeat, it is not a cure. There is no cure for me. I am stuck with my health the way it is.

My goals are to slow progression of my RA, keep my fibromyalgia under control, and hope there is no cancer reappearance. I think I have real expectations for my health.

The idiots don't understand. I don't get to go to a lot of events and do things that involve much standing or walking or much of anything. Their frequent advice on maybe resting up ahead of time doesn't work for me. If I do too much, I pay the price by resting for a few days to recover.

It is time for me to stand up to the idiots. Maybe I would do better if I consider it educating them.

Saturday, January 3, 2015

Its not luck if its cancer

I saw an article yesterday that annoys me to no end. Apparently bad luck is the cause of most cases of cancer. Barbara over at Let Life Happen also blogged about it. Its not luck if its cancer.

This new study looked at many types of cancer but not all and found that its just plain bad luck that accounts for many of these cancers and not environment or behavior or anything else. Its a crap shoot of gene mutations.  Granted smoking can cause lung cancer and sun exposure/tanning beds can cause melanoma.

Thank you for allowing me to be the beneficiary of so much back luck. I am overjoyed. I am so elated I can't stand it.

But on the upside, this does help answer the 'why me' question of every cancer patient. I think there was a line in '50/50' where when diagnosed  he asks 'Why me? I recycle!'.

So I am going to take the upside of this issue. Instead of bad luck, we can now call it an 'unfortunate series of gene mutations' which is what it really is.

Going back to what is known about the BRCA genes and the fact that they account for only 5-10% of all breast cancer cases. The rest are mostly caused by an 'unfortunate series of gene mutations'.

When I was diagnosed with breast cancer, my oncologist suggested I get tested for a specific gene mutation which I didn't have. I did find out that gene mutations can happen to a single person, they don't have to be inherited. You can just get them. I was told while I didn't have the mutation that they tested for, I probably did have another mutation that was similar but had no test yet available.

I can live with that as opposed to luck. Because its not luck if its cancer.

Friday, January 2, 2015

A cancer warning

Thyroid cancer has the highest increase in incidence in the US of all cancers. Thyroid cancer is one of the so called 'good' cancers as it has a 95% 'cure' rate.

However here are a few facts of warning:
  • The 'cure' includes the removal of the patient's thyroid which results in a life time dependence on a synthetic replacement hormone. Your body 'sort-of ' runs correctly. Some people never can get their dose correct and live in constant imbalance.
  • It hits the young and old - from toddlers to seniors. And its increasing in young patients to the same prevalence as Non Hodgkin Lymphoma in teenagers. 
  • No one knows why it is increasing in incidence so strongly but radiation exposure is suspect.
  • When I was diagnosed with thyroid cancer I think there were about 12,000 cases nationally. In 2014 33 years later, there were 63,000 cases. That is more than the number of cases of rectal cancer, all types of leukemia, or all types of oral cancers, or pancreatic cancer. Haven't you heard of those?
So its not a good cancer if it affects so many. And its increase is not explained. Most other cancers are decreasing in incidence but not thyroid cancer. There is no awareness for thyroid cancer. Visit thyca.org for more information on the disease.

Thursday, January 1, 2015

Happy New Year!


So it was a late start for the year as its 330pm and I'm just blogging now. Its New Year's Day and I don't have much for new resolutions this year. I'll just repeat prior year's:

Younger
Thinner
Taller

Especially thinner. I have a new medication that is supposed to kill my appetite.No signs of that yet but I am always the optimist.