Monday, February 8, 2016

Just because, doesn't mean 'right this second'

When you get medical, or any other kind of, bad news, the first reaction is "FIX IT NOW BEFORE I DIE!!!!". You then start making decisions as you learn about your choices. And proceed to get your life back.

But.... What if the news is wrong or has been misinterpreted? Then what?

This is especially true now with BRCA and other gene testing advances.

"In a paper published in the Journal of Clinical Oncology, the Peter Mac team has demonstrated that some genetic tests for breast cancer may be misinterpreted, potentially misinforming the affected families and risking unnecessary preventive treatments.

“It is now possible to screen a large number of genes at the same time – known as panel testing – at a fraction of the cost previously required to sequence just one cancer-causing gene such as BRCA1,” according to Professor Ian Campbell, Head of Peter Mac’s Genetic Cancer Research Laboratory.

“Understandably, this has increased demand for such tests amongst health care providers and patients concerned about their family history.

“However, while the increased risk of breast cancer associated with some genetic mutations is proven, for others there is a lack of robust scientific data to suggest preventative treatments are required.”"

There is a fair amount known about the BRCA genes and their impact on a patient for increased risk of breast cancer or other ailments. But not as much for the other genes. So you do not want to start making a lot of decisions right away. You do n't want to treat the information about other mutations the same as BRCA mutations. I guess the message is that you need to educate yourself on what you are being tested for before you make decisions

Sunday, February 7, 2016

Take your pills

An every day conversation with my husband:

Me: "Did you take your pills?"
Him: "Let me check. No"

And my lessons from last weekend stand by me.

I am not alone. Drug companies are creating programs to help patients take their pills. Yes its part of a money making program. The more people who take their pills the more they can sell - as the cynical side of me says. But the real problem is people who do not take their pills get sicker and sicker. This drives up the cost of medical care in the US. (Which uses up more health care money so big sticker medications are in the spotlight for a smaller share of the remaining money.)

Time to stop being cynical.

Think of it this way, a patient goes to the doctor for an ailment. The doctor prescribes a medication for which the patient never fills the prescription, or if they do fill it, they forget to take it. If they had taken their medication regularly, they would feel better and not need the surgery they eventually had. Medical research is done so that we get better and live longer.

One of the problems is affordability of the medications. Pharma companies have long since had payment options for the uninsured which does help some.

Another problem is that some people get the mind set that no pill will help them. Or other reasons they come up with not to take the pills. Or side effects, fear of side effects, or no perceived effect by the medication. Along with basic forgetfulness - something we all suffer from time to time. A friend hurt her back recently and said she had a bad night the other night and was in a lot of pain - she forgot to take her prescription....

My message is "take your prescriptions as prescribed and if they don't work, cause side effects, or you can't afford them, call your doctor for options."

Saturday, February 6, 2016

New bed

I consider a power bed to be something of a medical requirement, and not some extra expense at this point in my life. My husband thought it was an expensive luxury and wasn't too happy I insisted on getting one. We can just say we have a difference of opinion on the subject but as I said it was the one thing I wanted with a new house, we got one. I need to do everything I can to make sure I can sleep.

The new bed finally arrived yesterday, in the middle of a snow storm (expected accumulation of 4-8" which turned into 10+" and a six hour power outage). It was snowing enough that we were concerned it would still be delivered as scheduled. I called to confirm around 11 am and they were out on the road. So I called the plow company and he said he would be here in an hour or so. I crossed my fingers that the plow would get here before the delivery truck. Of course not.

Our new house has a fairly long driveway with a hill sloping down from the road to the house. The delivery guys showed up and parked on the street as I doubt they could have gotten the truck back out of the driveway.  They slide the base of the power bed, which is fairly heavy, down the driveway in its box. It was a big sled essentially. They unwrapped it outside and set it up in the bedroom. Then they dragged the old mattress and box spring up the hill and slide the new mattress down the hill (definitely got a workout).

My husband got out of work early because of the storm. When he arrived he had to leave to go run some errands because the driveway still wasn't plowed. I called the plow company again.... An hour later the driveway was plowed and my husband could actually get in the house.

Due to the lack of power, I couldn't show him how the bed goes up and down and you can adjust it and get really comfy. He did lie down on it to read and I could hear the snoring from the living room. He also admitted that it was comfortable. As soon as the power came on, I readjusted it so we were really comfy.

Then when we went to bed last night, I raised the head of the bed a tiny bit (because one of the real points of this bed is that the head of the bed could be raised to reduce snoring). This morning, my husband slept in a bit. He admitted to sleeping well. Me? I was very comfortable. It was every penny. A new power bed is clearly better than a 15 year old mattress with a memory foam topper.

Friday, February 5, 2016

Put it in a drawer and walk away

I have been unpacking and organizing for far too long now. But I am making progress. At our old house, where we lived when I went through my breast cancer (mis)adventures including surgery, chemo and radiation, after treatment I stuck my wig and chemo caps on the shelf in the closet. Sometimes while looking for something else, I would come across them and get the unwelcome memories.

This morning, I made a better decision, I stuck them in the bottom drawer of a cabinet and they will stay there, hidden away. The only things in the drawer are cancer related - wig, chemo caps, wig stand, a few books on coping with cancer. Nothing else.

That means I have no other reason to open that drawer unless... unless....

Let's not go there. Ever, I hope.

Thursday, February 4, 2016

Rheumatoid Awareness Day, Not Arthritis Day

I was wrong. Tuesday was not Rheumatoid Arthritis Day, it was Rheumatoid Awareness Day. This was started in 2013 by the Rheumatoid Patient Foundation. For 2016, they asked people to select one of their Rheumatoid Disease Facts and blog about it. 

In addition to the fact that I was wrong about Rheumatoid Awareness Day, I was also not aware that rheumatoid arthritis is only one symptom of rheumatic disease. 

So I did a little research. Here is a full list of all the other rheumatic diseases with a brief look below.
  • Bursitis. A condition involving inflammation of the bursae (small, fluid-filled sacs that help reduce friction between bones and other moving structures in the joints) that produces pain and tenderness and may limit the movement of nearby joints.
  • Fibromyalgia. A chronic disorder characterized by the presence of tender points—points on the body that are painful upon the application of pressure—and widespread muscle pain.
  • Gout. A type of arthritis resulting from deposits of needle-like crystals of uric acid in the joints, usually beginning in the big toe. 
  • Infectious arthritis. A general term used to describe forms of arthritis that are caused by infectious agents such as bacteria or viruses. 
  • Juvenile idiopathic arthritis. The most common form of arthritis in childhood, causes pain, stiffness, swelling, and loss of function of the joints. 
  • Polymyalgia rheumatica. A condition involving tendons, muscles, ligaments, and tissues around the joint that causes pain, aching, and morning stiffness in the shoulders, hips, neck, and lower back. 
  • Polymyositis. A rheumatic disease that causes inflammation and weakness in the muscles. The disease may affect the whole body and cause disability.
  • Scleroderma. A condition in which an excessive production of collagen leads to thickening of and damage to the skin, blood vessels, joints, and sometimes internal organs such as the lungs and kidneys.
  • Spondyloarthropathies. A group of rheumatic diseases that principally affects the spine. 
  • Systemic lupus erythematosus. An autoimmune disease in which the immune system attacks the body's own healthy cells and tissues.
  • Tendinitis. Inflammation of tendons that is caused by overuse, injury, or a rheumatic condition and may restrict movement of nearby joints.
Here is the list of the rheumatic diseases that I have:


But I had no idea that all these other diseases were considered to be rheumatic diseases. But now I have learned and I hope others can learn as well.

Wednesday, February 3, 2016

Rheumatoid Arthritis Day - yesterday

Yesterday was Rheumatoid Arthritis Day. I missed it. I have a track record for missing all my medical ailment days. At least I am consistent. But RA is not a fun ailment.

Rheumatoid arthritis is different than osteoarthritis. Osteoarthritis is the kind you get from overuse of your joints - like too much tennis or running. Rheumatoid is the autoimmune kind where your body body's immune system attacks your joints. And if you are lucky like me, you get both kinds.

30 years ago patients were told to take aspirin for the pain and the focus was not on treating the disease but the symptoms. Now patients are treated aggressively so that there is less chance of deformation in your joints - translate that to less likely to need a wheel chair in the long term.

I feel somewhat knowledgeable about RA as my mother has had it since 1989. But it wasn't my body so that I didn't know that much. Clearly I wasn't walking the walk so I can't talk the talk. Once again the clear difference between being a patient and not being one.

The longer I have it, the more I realize I do not know about it. For example, I do not understand the biologics. I mean I know what they do and how they work, but I do not know about the differences between them. One thing I do know about them is that if you have had cancer, they do not like to prescribe them to you. So I may never get them. And therefore never learn much about them. 

I also know it usually starts with the small joints of your hands and feet and it is usually parallel - meaning if it affects one hand, it affects the other. Both sides of your body at the same time - just so you have more fun. I know from your hands and feet it moves to larger joints - like elbows and knees. But I am not sure about hips and shoulders as much- so that may be my osteo kicking in.

So anyway, I missed Rheumatoid Arthritis Day. So to celebrate today, I will go see my knee doctor and find out what's going on there.

Tuesday, February 2, 2016

A really big mistake

So I was stupid (and testing my boundaries) and skipped my pills for two nights. I will never do that again. Ever.

Yesterday I went to the gym and had a lot of pain. My left hip gave me enough pain that I thought I would have to go home. But I took a break and was okay. But I did cut my workout short because of pain issues. Then when I came home, I took it easy (mostly - but did move some furniture around) and made a point to rest some.

But then I started thinking (being dangerous again) about all the assorted pains I have been having, which are not necessarily what I expected. I had expected some fibro pain, back pain, and RA pain. However it doesn't make sense to me that my left hip has given me so many issues.

I have had bursitis in my hip but that has been under control for along time. So why am I now having so much other pain there? This is a new kind of pain, not bursitis pain. Is there something else wrong? No there can't be. I just don't have time for other ailments.

I will discuss it with my doctors at my upcoming visits but am not going to rush in for a new appointment with any of them.

Today I have nothing planned. I don't need to go anywhere. I can stay home and take care of me and continue the unpacking/reorganizing process. We now have a deadline - house guests arriving in ten days - so I have to get moving. As much as I can without causing more pain.

And I will never intentionally skip pills again.

Monday, February 1, 2016

Rethinking things

So my life has been in a bit of a transition for the past few months. We decided to move, then we started packing, house hunting, more packing, having a cold for weeks, the holidays, moving, losing (and then finding) the cat, unpacking, and unpacking.

For the first time I got up this morning and went into the kitchen and started puttering around. I moved the coffee maker to where it should be (on the counter under the cabinet full of coffee cups) instead of where we had first plonked it on the counter the day we moved in. I then started looking for things in the cabinets - to find the salt (which we do not have) - and rearranging things some more. Then I even did some tidying. Now I want to do some more puttering and cleaning. So I feel settled. Finally, and it feels good.

I have had some friends over so far. I have even reconnected with some from whom I used to live further away. Some were content to sit and chat. Some wanted to help unpack. All had advice for numerous suggestions on what we should do next - move furniture, select paint colors, lighting ideas and more. Some we will take to heart and do and others we will politely ignore.

But all this transition and change has opened a door for me to make some more changes in my life. Its not that I am hesitant to make changes but sometimes a making a few changes opens the door to making even more.

A little prod from one corner could make you rethink about why you have some connections or do some things. And sometimes they connect dots for you that you didn't really acknowledge previously. So more changes will be made in my life and I think I am comfortable with that as well.

Its not that I am trying to be vague here but I am not sure about all the changes I might make yet and have to feel things out some more. I might even redesign my blog again...

Sunday, January 31, 2016

That was a mistake

Last week I blogged about not taking my pills. I skipped them. That was a mistake. I made the decision two nights ago not to take my pills before going to bed. Then I decided again last night not to. I have since learned that was a big mistake.

Yesterday I had a fair amount of pain which I just pretended was from overdoing things at the gym on Friday. Then I woke up in the middle of the night and a lot of things hurt. So I have learned my lessons.
  1. My pills do work.
  2. I was kind of stupid to push my limits like that.
But now I know that my doctors do know they are talking about and that I do really have a lot of things wrong with me. Damn. I guess I will have to take it easy today.

But at least I know.

Saturday, January 30, 2016

Heck yeah

Are we ready for pharmaceutical company price wars? Heck yeah! There has been a lot of 'hoohah' going on pricing with pharmaceutical companies, especially for Gilead's hepatitis C drugs which came in at a shocking $84,000 per treatment course. Which was later upped to $90K plus for second treatment option.

Now Merck has stepped into the hep C market with a new drug which is only a paltry $54,600 treatment for a 12 week course of treatment. Wowza!!! That's so much more affordable.

Of course Gilead says Merck's treatment isn't as good (of course). [And their CEO just stepped down because of the pricing crisis.] But the stock analysts are rooting for Merck on this one so we will just have to wait and see who wins this one.

But maybe instead of focusing on the big companies we should talk about the benefits to the patients. But the big news:

"One industry consultant, Roger Longman of Read Endpoints, a research firm that tracks reimbursement issues, believes that Merck’s pricing may be sufficiently tempting for benefits managers. That’s because its new treatment carries a lower list price than the Harvoni list prices, regardless of whether patients take that treatment for eight or 12 weeks, depending upon their strain of the virus.

“Essentially, what Merck has done is undercut Harvoni” in most patient populations, he explained. “And remember that Merck will also offer rebates. So they’re giving themselves some room to make it still more attractive for pharmacy benefits managers, some of which may have contracts that allow them to switch drugs if there’s a dramatic price difference from a new product.”"

So maybe there is hope for the patients after all.

Friday, January 29, 2016

That 'Here We Go Again' Feeling

As a professional patient, at some point when faced with a diagnosis instead of panicking, you get that 'here we go again' feeling. You skip the whole stress and panic stuff and go straight to the 'how the hell are we going to fix this now'?

Honestly I do get stressed about bad medical news but I skip the panic crap and go to the 'here we go again' level. Its sort of like you become deadened to the stress of more medical crap. And it quickly is only crap.

Its sort of becoming brain dead or numbed to yet another medical disaster. They just seem to lose their impact.

Sometimes I feel like I only realize the real impact of what the doctor said to me when someone says to me 'that must really suck' or something to that effect. This is why I have therapists and other support people to help me digest all the medical crap.

I mean how much more can a person take? You told me I had cancer twice, two chronic incurable ailments, and one body falling apart syndrome that can't be cured. What else could there be? I will remain calm..... As long as I can.

Thursday, January 28, 2016

Maybe I'm doing better

So people ask me how I am doing. Or if I miss a phone call they want to make sure I am okay. But maybe I am doing better. We moved and I get to live on a single floor most of the time. I retired and have more time to get things done.

However I still run out of energy, regularly, maybe even every day. Well, not every day, just a fair amount of time. A few errands and then I need a nap. So unpacking is going slowly.

I have had two days back to back of lots of errands and I ran out of energy both days. Last night we had pizza delivered because I was too tired to cook and then I fell asleep on the sofa. (I hate when I fall asleep on the sofa because then I have to get up and get in bed to go back to sleep and I never feel rested after that.)

Today I have some phone calls and one errand. I will take it easy and get plenty of rest. This may mean less unpacking but I think its more important to get some rest. And I am behind on my Lifetime movies on the DVR....

I do think we have a better quality of life here. The news from yesterday's local police report included: "At 12:35 p.m., an injured squirrel was reported." Not that I had concerns for my personal safety where we lived before but if local crime includes an injured squirrel, I think its a safer place to be. And the cats would be happy to check on the injured squirrel for the police.

Wednesday, January 27, 2016

Bed Shopping

The one thing I definitely wanted in our new house is a new bed. We have been talking about getting a new bed for a while anyway and as my health continues to be oh-so-wonderful I really want a new power bed - the kind that you can raise your head and feet.

Yesterday I made my second educational expedition to the furniture store to learn about options. I had gone last fall to find out about options for split foundation and king vs. queen size. Now I know how furniture fits in our new bedroom and wanted to learn some more.

I think I now know what I want for a power base - I want the fancy one with the anti-snore feature. That's where you can raise the head of the bed a tiny bit and quiet the snorer - which is one or the other of us, depending on who you ask. Its not that expensive and there are many much more expensive ones.

One feature included in the fancy power bases is that they can provide a light massage. But fibromyalgia can make you hyper sensitive in many ways including to vibration. I might just need to block the massage feature. But if I can get a better night's sleep, I'm all for it.

The next step is to get my husband to the store with me so we can figure out which mattress we want. I claim its for my health and getting a good night's sleep and therefore a justifiable expense. But there is a bit of hesitation in our house as to should we spend the money. But its for my health!

Monday, January 25, 2016

Ten Year Cancer Survival Rates

Finally, the first long awaited ten year cancer survival rate study has been completed. In Japan, a group of scientist followed cancer patients diagnosed between 1999 and 2002 for ten years. The results were interesting (in general but also for all us cancer people who have been waiting for this kind of study). Here is the bulk of the results.

"1. Survival rates depend on cancer type
Firstly, the type of cancer a patient was diagnosed with largely determined their chance of survival. Among cancer types studied, patients with thyroid cancer had the best chance of being alive 10 years later at 90.9%. Breast cancer, the most commonly diagnosed cancer within the United States, was another standout with a survival rate of 80.4% after 10 years, dipping from a survival rate of 88.7% at the five-year mark. Other generally high marks included uterine and cervical cancers, with 10-year survival rates above 70%, and stomach cancer, with a 10-year survival rate of 69%.

On the flipside, certain cancer types offered very poor long-term survival potential. Cancers of the esophagus, bile duct, and gallbladder all had 10-year survival rates below 30%, and liver cancer survival rates dipped from 32.2% at the five-year mark to just 15.3% at the 10-year mark. As is the case with nearly all broad cancer studies, the difficult-to-treat pancreatic cancer took the dreadful title of lowest 10-year survival rate at just 4.9%.

2. Recurrence rates appear to differ dramatically
Secondly, I believe the data speaks to the idea that certain cancers are far more prone to recurrence, or perhaps secondary cancers, than others.

For example, stomach cancers only saw a very minimal drop-off of 1.9% between the five-year and 10-year results. The implication is that recurrence rates are probably low for this indication. Conversely, liver cancer witnessed a nearly 17% drop-off in survival rates, implying that recurrence rates are considerably higher....

3. Progress is being made

..."Cancer treatment is improving, and the 10-year survival rate of those getting treated now will be even higher."

As a whole, the 10-year survival rate for all cancers was 58.2%, with an obvious trend that showed earlier-stage cancers offered a higher survival potential than late-stage cancers. Specifically, cancers discovered in stage 1 had a five-year survival rate of 90.1% and a 10-year survival rate of 86.3%. In stage 4, survival drops dramatically to just 17.4% at five years and 12.2% at 10 years. Still, without pharmaceutical, diagnostic, and device innovation, I would anticipate both figures being even lower."

I was very happy to read this. I just don't understand why no one else has bothered to run this kind of study. 

Sunday, January 24, 2016

Disease combinations = confusion and lack of support

When you get a disease, you learn about the symptoms, treatment, and when you will feel better. Add a second ailment and things get confusing. I was told I had rheumatoid arthritis and fibromyalgia about the same time. And I have osteoarthritis too.

I was also told it can be hard to tell which ailment is causing which pain. I can tell sometimes - when a ribbon of pain rushes across my back, that's fibromyalgia. When my knees grind as I walk down the hall, that's osteo. When my fingers decide not to cooperate, that's rheumatoid. When I need a nap, that can be fibromyalgia and/or rheumatoid.

But then I look for support - medical and emotional. The medical support is usually fairly good but then sometimes I get told 'you need to ask your doctor for that other ailment about that'.

And emotionally, I dig around to find people like me. I have found a support group for those with chronic pain but its not that convenient for me. I found a fibromyalgia support group and don't really like how its run. (Its run well, but its just not run in a way that works for me.) I was just told about a new support group for people with chronic illnesses (and told that unfortunately I am eligible for that one too) that I may try.

I have also looked around for medical resources and bloggers who are like me. I frequently find medical articles and studies on one ailment but not on people with more than one. I know most medical research is done focused on one ailment but there must be more people like me. I haven't found any really.

I did find a study that states that if you have breast cancer or thyroid cancer your risk is double (or so) for the other one. I know of two people (besides me) who have had both.

My complaint I think (if its really a complaint) is that the medical world is not set up for people with multiple ailments. Its really designed for one ailment at a time. If your treatment changes you need to wait for that medication to kick in before you can go on to the next ailment. This can takes months. Most RA treatments take three to six months before their impact is felt. So that leaves me stuck in pain or cranky. Or just confused and isolated.