Tuesday, July 29, 2014

Talking and working out

Yesterday afternoon at the gym, I got to talking to two other women (this is a common occurrence to stop and chat) on the topic of getting into shape/staying in shape while dealing with ailments. One woman is just done with chemotherapy again for chronic recurrent ovarian cancer and is new to the gym. The other woman has osteoarthritis among other problems and has belonged for five years or so.

The woman with ovarian is trying to get back in shape so she can go on a three week vacation to Turkey and Spain. She said it is quite difficult quite understandably to get some muscle tone again. I shared that I had been diagnosed with RA and fibromyalgia since joining the gym plus two cancer diagnoses as well. They both said they were impressed by what I could do in my workout. I said I thought I was in better shape at my diagnosis because I had already been going there regularly.

So the discussion quickly turned to the important of working out before a life changing diagnosis and after the diagnosis. All of us agreed going to the gym was important and helped us greatly. The third woman with osteoarthritis had  had a lot of back pain before working out. Her improved muscle tone had helped her a lot and helped get rid of a lot of pain.

Then the conversation came to the benefits of swimming. All of us agreed we could not be paid enough to swim laps. One woman dog paddles, the other woman had her face pushed in the water by an instructor as a child and never learned to swim. I just hate swimming laps. So all of us agree the gym is  a great way to get in shape but you won't catch us in the pool.

So while talking and working out, I learned a bit about others and how we can all agree on different things.

PS this is a lame post today. I know it.

Monday, July 28, 2014

Getting even or driving your doctor crazy

We all try to be a good patient. We try to eat better foods, less red meat more chicken and fish, get 8 hours of sleep, drink less, brush our teeth, floss, yadayadayada...

Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:
  1. Dr Google - we all know Dr Google is an idiot.
  2. Refusal to vaccinate - which has caused more problems later on
  3. Demanding antibiotics - they don't fix everything
  4. Claiming you are eating less and working out more but still not losing weight - obviously you aren't
  5. Asking for a quick fix - there is no magic pill (I know this because I ask regularly)
  6. I only eat low fat - low fat is good but some fat isn't bad
  7. I don't have time to come in - really? You have time to go to the gym, work, out to dinner, etc.
  8. I can keep smoking as long as I exercise - They don't get it
  9. I don't eat carbs - don't demonize a whole group of food. Whole grains are carbs but are good ones.
Now that I have this in mind, I can get ready for my rheumatologist appointment this morning. I haven't asked Dr Google much about RA recently so I am probably good. The rest probably won't come up. Except for the magic pill issue... I just ask to make sure nothing has slipped by me.

But I have 1:58 left to come up with my list of questions for her.

Sunday, July 27, 2014

I swear they make this stuff up!

The latest breast cancer research says that sleeping in a dimly lit, as opposed to dark, room may interfere with how tamoxifen works. Really? They tried it on 12 rats. Yep. So now is news worthy.

So now you are supposed to have room darkening shades or convince your local community to turn off the street lights. I'm not buying it. Even if I was still on tamoxifen I would not believe a 12 rat study. This is why they always say more research is needed.

Or they just make this stuff up.

Saturday, July 26, 2014

Did chemotherapy change your body?

A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?

I am talking about food and medications to be specific.

Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.

More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:
  • prednisone - also used to treat RA flare ups as well as allergic reactions
  • plaquenil - an old school RA drug
  • voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
  • adhesives - as used on pain patches
I was given both prednisone and plaquenil at the same time when first treated for RA. I reacted to both. At the same time. How (not) fun.

And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.

If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.

I am petrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records. 

But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told  us before chemo that we could expect these changes.

Friday, July 25, 2014

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

Thursday, July 24, 2014

The word for the day is "Ow"

On a scale of 1-10, how is my pain today? Probably about a 4, all over my body. With spots of 6-7 in certain areas.

I don't know why but for the past few days my body has be very achy and sore. I have been living on Tramadol again. I hate this. I prefer not to take pills if I don't have to. I mean I do take a lot of pills but prefer not to take any more than needed. And since everything hurts, I need tramadol to survive without rampant crankiness.

And to start my day I have a dentist appointment. This is where they will go in and pick at my teeth with sharp metal objects. Its a new dentist office but not a new dentist. The dentist moved to a new office so we followed her. Apparently the hygienists are very 'good' at cleaning and whip the patients into shape. I can't wait.

This is where I also talk to the dentist about not getting a crown on my root canal until January when we will have dental insurance. Its been a month and it hasn't been a problem so I want to wait. I'm cheap. Actually I just don't want to pay for a crown right now if I can wait and get one through insurance. I already paid for the damn root canal.

To recover from the dentist, I will go to the gym. To recover from the gym, I will go to the grocery store. But not the grocery store which is on strike right now.

First things first, I will go take a tramadol, and then take a shower, and brush my teeth after breakfast.

Wednesday, July 23, 2014

Does blogging=journaling?

I just read this article about the benefits of journaling - taking pen to paper. The claims are it benefits your immune system, blood pressure and lung and liver function as well as allowing the right side of your brain to be creative.

It also gives tip for getting started. But I've clearly already started. As long as blogging equals journaling. While I am not putting pen to paper, I am putting hands to keyboard and my right brain is working (I hope).

The tips given are:
  • write consistently
  • consider starting each day writing
  • never self edit
  • write about the good, the bad and the ugly.

I would add to that -  if you have a brain like a sieve (like me), you can go back and read what you wrote so you can remember what you actually did that day. And ignore whatever your high school English teachers told you. Mine told me I couldn't form a cohesive paragraph and would never be a writer. But she was old and cranky too.

Tuesday, July 22, 2014

Medical errors - and what if they didn't tell us?

Dr. Ernest Amory Codman.
Massachusetts General Hospital archives
Dr. Ernest Amory Codman.

We all are aware that, unfortunately, medical errors can and do occur. A recent example is of this New Zealand woman who was never told of her Her2 positive diagnosis for two years and didn't receive the correct treatment until it was too late.

But what if doctors never told us about treatment outcomes and what their error rates were? That would be pretty damn scary. No one likes to admit they made a mistake but as 'to err is human', it does happen.

But that's the way things used to be:

"Dr. Ernest Amory Codman was in his mid-40s when his golden career as a sought-after Harvard surgeon began to unravel. He had quit in exasperation from Massachusetts General Hospital, and when he took his dispute with hospital leaders public, colleagues turned against him. Many stopped sending him patients.

It was the early 1900s, and Codman was impatiently pushing hospitals and doctors to adopt a practice many considered heretical at the time: Record the “end results’’ for every patient — including harm caused by physicians’ errors — and make them public."

But now his work is being recognized:

"A century later, many of Codman’s ideas are the bedrock of modern medicine. And a group of doctors, including a former Mass. General surgery chief, plans to make sure he gets the wider appreciation he deserves this week." 

His work has led to many changes in medical practice, even if he wasn't appreciated during his life time. You can read here the whole story here but think of what medical practice would be like with out people like him pushing for change.

Monday, July 21, 2014

Specialty Drug Prices are Killing the Patients

I know I have blogged about this before but it just irks me of the inequalities that I see in this system. I do not have a grudge against big pharma. I really do not. I just wish there was more change in the system where drug companies seem to be tightening the noose on patients who are trying to survive.

Is your life worth $100,000 annually? Can you afford $1000 monthly in drug copays? If you ask the big pharma companies, it is. The majority of the new drugs approved last year by the FDA are specialty drugs, 19 of 28 (which is an appallingly low number of approvals to me but that's another story for another day). These come with the hefty, specialty price tags.

"Fewer than 4 percent of patients use specialty drugs, but they account for 25 percent of total drug spending in the United States; and the growth of specialty drugs is a key factor driving up health care spending, according to PricewaterhouseCoopers."

Many insurance plans provide affordable co-pays for the drugs. But more and more, as a cost saving effort, are switching to tiered plans. I have one where generics are very cheap but brand names drugs can be very expensive. They can be 35% of the retail... I can avoid much of that by mail order but still when one month of one drug has a co-pay of $105, it begins to add up. More and more insurers are moving to this type of coverage as they cannot afford to keep up with the new drug prices. I do not blame them with the costs of these drugs.

We have an industry which is full of employee perks and generous salaries and we have insurance companies who are trying to balance their budgets and patients who are being killed by their drug payments. Where does that problem lie?

This system needs to change. Its not all the pharma companies fault, there is some blame to be borne by the insurance companies as well. Moving costs to the patients is not the best option either.

Sunday, July 20, 2014

Sleeping, or not

I have problems sleeping these days. On a good night, I get to sleep for a solid 12 hours. I'm not kidding. I hope to do this once a week at least. Not this weekend. If I can, I save my big sleeping nights for the weekend because I don't have to get up in the morning.

Friday night I slept from about 10-330. Then I dozed off and on until 6 when I gave up and got up. Last night, I slept from about 930 to 4. Then I couldn't sleep so I played games on my phone (because my phone was nagging me to get caught up on words with friends) for about half and hour and then dozed for a while and finally got back to sleep for a bit. I am feeling a bit sleep deprived as a result.

I have spoken with my many doctors about this and my PCP said she wants me to have a sleep test to figure out if I have apnea or other issues.

Sleep tests can determine other problems as well. According to Dr. Wikipedia:

"Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, idiopathic hypersomnia, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders."

My PCP said that now they do sleep tests where they send you the machine at home and you can sleep in your own bed. However the hospital set me up for an overnight sleep test there. They claim the room is like a motel room. I hate sleeping in motel or hotel rooms by myself. I want my husband there to protect me from intruders and scary monsters or zombies. I also want the cat. I'm not sure I can bring either.

I got the schedule in the mail late Friday afternoon when it was too late to call. Then I got the information brochure in yesterday's mail telling me all kinds of useful information. Dress in comfortable clothes - not pajamas. It doesn't sound like you can wear pjs. They do not have shower facilities either.

I like this part where it says if you drink every night you should do so before coming - but you can't bring any alcohol and you must have a driver bring you if you are drinking. LOL. I find it funny that they specify this. Obviously some have driven drunk to the sleep test or brought in a bottle or two.

But I don't think I can get sleep there which is the whole point of the test. And what if I want to gt up and pee in the middle of the night?

First thing Monday I will call my insurance company and make sure they cover the test at home instead of there. Then I will call the hospital and see about having a home test if I can and ask all my other questions - can I bring my tablet to read a book on before sleeping? What about PJs? What about bathroom visits? Lots of things to know.

All I know is I need to sleep more. And this might help.

Lack of sleep causes both crabbiness and crankiness.

Saturday, July 19, 2014

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:
  • Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
  • The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
  • The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.
We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

Friday, July 18, 2014

VA Hospitals

The message here is do not go to a VA hospital. Especially for cancer care.
I find this appalling. We send men and women off to war and they are supposed to receive their medical care at VA hospitals around the country. What do they get? Poor and delayed care. And this results in deaths. The waits are twice what they are at other hospitals.

The saddest part of the video above is that there are probably so many more stories like this.

What is going on at the VA hospitals? Bureaucracy? Paperwork? Employees who don't care? No sense of urgency? I don't know but you won't catch me near one. Yesterday I blogged about the best hospitals, now these are some of the worst as far as I am concerned.

Thursday, July 17, 2014

The Best Hospitals

US News and World Report just released its annual list of the best hospitals in the US. The hospital I go to is not in the top ten.

And I am not concerned. I mean what is the benefit of going to one of the top 10 hospitals inthe US? My bet is it comes down to two issues:
  • More expensive bills
  • Longer waits for appointments.

I have been told by someone who worked at one of the big name Boston hospitals that unless you are related to a senator, you can expect a long wait to get in to see a doctor. And a recent study of Boston hospitals showed that the big name hospitals offered the highest fees.

With all my medical crap, I am very comfortable with the medical care I receive at Lahey Medical Center which is ten minutes from home.And that recent study of fees in metro Boston put it near the bottom of that list.

My only complaint with the hospital is that I am there too damn often.

Wednesday, July 16, 2014

The mammogram benefit discussion

There have been a few (thousand) discussions on the benefits of regular mammograms in the past few years. There are all sorts of claims on the problems of false positives, over diagnosis, false negatives, and all that.

So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background

This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.

What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.

Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.

That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.

*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.

Tuesday, July 15, 2014

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:
  1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
  2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
  3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.
That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

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