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.

Saturday, January 23, 2016

Life in the new house

We are adapting to the new house. I really like having a lot of my life on one floor and fewer reasons to go up and down stairs. My body likes that as well. On the other hand, it means I am closer to the kitchen and other noise sources (what did you think I meant - midnight snacking?). When my husband stays up later than me or gets up earlier - both frequent occurrences - there isn't a flight of stairs protecting me from kitchen clean up or breakfast making sounds.

On the other hand, the cats like having us closer to their food dishes. They can hear us in our bedroom from anywhere on the first floor which means they come and beg for food as soon as they think its breakfast time. Or if I get up in the middle of the night, it must mean time for a snack - because I am on the same floor as the kitchen.

Overall its a good place for all of us. We aren't quite ready to entertain yet but are getting closer. The unpacking fairy hasn't shown up in the middle of the night to help us when we weren't looking so we have a ways to go. But I can now find most of my clothes and am getting my craft room/office set up the way I want it. I have also reconnected with my kitchen stuff - I have made bread in my bread maker, found the cuinsinart parts, and the crockpot. Tonight I making pulled pork for dinner (with homemade barbecue sauce, cornbread, and braised cabbage on the side) - this make me happy.

If you see the unpacking fairy, please send her our way. Thanks.

Friday, January 22, 2016

So what does that thyroid do anyway?

All of us thyroid cancer people may have fewer problems with their cancer treatment than the life long problems they face with out a thyroid. Do you have any idea what exactly your thyroid does? Most people don't so don't worry if you don't know.

Finally I have found an article that easily explains what exactly a thyroid does.

"The thyroid is a small hormone-producing gland in the neck that controls our metabolism,” explained Army Col. (Dr.) Henry B. Burch, chair of the Endocrinology Division and professor of medicine at the Uniformed Services University of the Health Sciences. Burch is also the endocrinology consultant to the Office of the U.S. Army Surgeon General, and works in Endocrinology Service at Walter Reed National Military Medical Center (WRNMMC).

“In addition to controlling metabolism, the thyroid plays a key role in maintaining [body] temperature, or thermogenesis,” added Burch, whose work has been published in the Journal of the American Medical Association (JAMA)."

So the one big thing it does do is regulate your metabolism. And what exactly does your metabolism do? Well its kind of complicated. Try reading this to get a basic idea but its your body's little engine that keeps it going. And without a metabolism your body just slows way down and turns into a little blob. I just laugh at all those diet tips that tell you to 'ramp up' your metabolism or your thyroid.

And that temperature control thing? I'm always cold. Unless its 100 degrees with 100% humidity and then I'm just whiney.

So imagine if you had to control your metabolism by taking pills for the rest of your life and always feeling cold. This is life after thyroid cancer.

Thursday, January 21, 2016

Wednesday, January 20, 2016

Non-impartial doctors

Do I expect my doctors to be my best friends? No. But I do expect them to impartial and have no biases when treating me. I try to do my part - show up for appointments, take my medicines are directed, and take fairly good care of myself. I have had a few doctors which I have felt I didn't really gibe with but in my mind, I really want good care, not buddy-buddy.

A new study (because we always need new studies) shows that more than 40% of doctors state they have biases to certain groups. Some of those include obese patients, patients who do not speak English, or have emotional problems.

"The most common reason that doctors said they stereotyped patients was because of their emotional problems, which elicited biases among 62% of physicians, followed by their weight, which 56% of male and 48% of female physicians said provoked biases for them. Other triggers were patients' intelligence, language differences, insurance coverage, age, income level, race and attractiveness."

Hmmmm..... Well doctors are human beings and I think every person would admit there are just some people that make them recoil a tiny bit. I admit I am not perfect and have my own cringe factor for some people - like the scary homeless guy on the subway yelling obscenities. (I realize that their problems are probably worsened by lack of medical/psychiatric treatment and they should not be blamed for their issues but I just don't want to sit next to them.)

The problem is that when doctors have biases, whether conscious or subconscious, the patient usually gets a lower standard of care. That's a real problem. Its not ethical for doctors to provide for different standards of care for different groups but if its a subconscious bias, how do they stop themselves.

Tuesday, January 19, 2016

Testing my limits

How often do I look at my box of pills and think 'what if I just threw them all away'? The answer is 'too often these days'.

Okay, I am human and even though I fill my pill box ever week, I am not perfect. Sometimes I forget to take some of my pills. I have to take pills twice in the morning and sometimes I miss the second set of morning pills. Those pills are ones which I take twice a day so if I miss half a day's dose every couple of weeks I figure I am okay.

But what if I skipped the ones I take once a day? I really make an effort not to. I have been known to wake up in the middle of the night (say hello to insomnia!) and check to make sure I have taken them all. I figure once, I could survive. But what if I just stopped them all?

The one pill I know I really need to take every day is my levothyroxine - which is my substitute thyroid gland. I know what happens if I forget that one. One day is fine, two or more days starts to cause problems. I once went on vacation and left my thyroid pills in my hotel in NY before flying to the Bahamas. I started to blow up like a balloon. These are important enough that I know if I ever forget them for some reason, most pharmacists will 'advance' you a few pills, especially if they are part of the same chain where you get your prescription.

I am tempted sometimes to stop taking one or two of them to see how much of an effect they really have on me. I have a weekly pain patch that has shifted from Thursdays to Monday nights after I have gone without it for a bit. Sunday night I was sick of the itching it was causing me so I yanked it off in the middle of the night and didn't put another one on until yesterday afternoon.

For some reason, I have felt like pushing my limits recently. Maybe its a phase. Maybe in some ways I am feeling better? I don't know. I just know I hate being dependent on a bunch of pills to survive.

Monday, January 18, 2016

Nerve damage from cancer treatment

If cancer doesn't kill us, sometimes its treatment leaves us with many more problems. One of these is neuropathy. A new study was to be announced over the weekend at ASCO in San Francisco where several hundred women were studied after cancer treatment.

"At an average of six years after cancer diagnosis, 45 percent of them still had symptoms of nerve damage, such as loss of feeling in their hands and feet.

These symptoms were associated with much poorer physical functioning and difficulty doing daily tasks, such as cooking and shopping. The women with symptoms also had changes in their walking patterns and were nearly twice as likely to fall as those without such symptoms, the researchers discovered."

And the best part is:

"While there are no effective treatments for this side effect, rehabilitative exercise programs may preserve physical functioning and mobility in the presence of neuropathy to help prevent falls and resulting injuries..."

I love the part about new effective treatments. Maybe we need cancer treatments with fewer side effects.

Sunday, January 17, 2016

American Cancer Society's 2016 Outlook

Earlier this week, the ACS released its new outlook for 2016 for cancer death rates in the US. As part of this, they provided four essential cancer charts. I found them very interesting, and hopeful. The first chart deals with cancer death rates over decades.
And the answer is they are going down. Look at the changes since 1990 or so! Look at the declines. The point is there, the death rates are lower than they were 25 years ago. Modern medical research has made a big impact on cancer deaths in case you were wondering why we spend so much is spent on it.

The next chart deals with types of cancer being diagnosed each year. I am very disappointed to see that thyroid cancer has made it into the top 5 types of cancer diagnosed for women each year.

The third chart shows us where lifestyle related cancer causes are highest. No surprise there - the deep South where obesity and poverty rates are highest also has the highest cancer rates. The healthiest people are in the West.

Finally, this is the chart that strikes the deepest chord with me. Look at how the rates of thyroid cancer have increased in recent decades.

Thyroid cancer used to be very rare. Not so much any more. More on these charts is available here.

Saturday, January 16, 2016

Yes Clinical Trials Are Trials

Yesterday I read this article on a clinical trial in France where one patient is brain dead and five others are hospitalized. I was very shocked by this. It was run in full compliance with local regulations, under medical supervision, and it was immediately stopped.

We need to remind ourselves on a few things about clinical trials. First of all clinical trials great. They serve a wonderful purpose in the development of new drugs. It is crucial that they continue. All cancer people hear about clinical trials and whether they are eligible and if they could help them or allow them to help future patients. They often often are a last ditch life saving attempt by patients.

Second of all, if you are selected for a clinical trial you do not know if you will even receive the medication being tested or a placebo or a previously approved medication. This is what leads some patients to travel overseas for treatment where they can get the new medication that is not yet approved at home.

Third of all a clinical trial does different things at each level of the trial from the US National Library of Medicine:

"Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.
  • Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
  • Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use."
You will note the first three phases cover the drug's safety. And Phase IV is why more research is always needed.

But back to France. That clinical trial that proved fatal was a Phase I trial where they were testing different dosages. Obviously they had the wrong range in mind or something else when they started. It is a very rare occurrence that deaths occur in clinical trials but not unheard of. I think that I have heard of other complications from clinical trials but I do not have any data to back this up.

So I think this death and other medical issues relating to the clinical trial raise the issue of clinical trial safety - something I think that we often overlook as patients. I know as a patient I think of clinical trials as wonderful things and help ourselves and future patients. But I never sit and wonder if I could be hurt by participating in one. Now I think I will consider it.

Friday, January 15, 2016

Those pesky breast cancer screening recommendations

Can I ask who is confused over the 'revised' breast cancer screening guidelines? Or should I just ask who isn't confused? Yes, no, yes, maybe, no one, everyone? How old? Not that young, should be older. Well maybe not. Not for everyone. Wait, oh just test everyone. No only for some people, talk to your doctor. That's a lot of different answers.

And in both my cancers I was clearly not a candidate for hitting the so called criteria for any testing. So I just ignore all the comments about too young or too old. Those really should be less likely or more likely instead of age related if you ask me. But they didn't ask me.

Anyway, so the USPTF (US Preventative Task Force) released a clarification on their breast cancer screenings earlier this week. They also claim they were misunderstood. And they want to clear up confusion. Well maybe the confusion was because what they said back in 2009 concerned everyone.

"The U.S. Preventive Services Task Force (USPSTF) released its final recommendations for breast cancer screening Monday in an attempt to clear up some of the confusion.

The group recommends that women at average risk for breast cancer should have a mammogram every other year beginning at age 50 up to the age of 74. Women in their 40s are advised to make an individual decision in partnership with their doctors, since the likelihood of benefiting from screening is lower for women in that age group.

Though this is an update from the group’s 2009 recommendations, the guidelines remain largely unchanged and a draft was released earlier this year.

The report, published in the Annals of Internal Medicine, also concluded that there’s not enough evidence to determine if newer 3D mammography is a good option for routine screening, or if women with dense breasts need extra testing.

The group’s 2009 report drew controversy for questioning the usefulness of mammograms for women in their 40s. But the task force says their words were widely misunderstood."


Blah, blah, blah. So in their clarification here they state that a mammogram every other year is all that is needed starting at age 50 if you have average risk. Let me ask all my friends in their 40's with breast cancer what they think if they had waited until 50 for a mammogram.

Okay, so medically maybe there is some logic in their plan. Or maybe not. If you look at breast cancer occurrence rates (from Cancer.gov):

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)
Age 50 . . . . . . 2.38 percent (or 1 in 42)
Age 60 . . . . . . 3.56 percent (or 1 in 28)
Age 70 . . . . . . 3.82 percent (or 1 in 26)

It sees clear that most breast cancers occur after the age 40. So I don't understand this wait until 50 business at all. Now I am even more confused.

Thursday, January 14, 2016

Now I can relax

The past few weeks have been horribly stressful for me. I have been sick basically since mid-December. We did not really celebrate Christmas and New Years. And the move was very stressful as well between the lawyers, realtors, and bankers and numerous delays. Anything that could have gone wrong seems to have. Finally we got moved into to our new house.
Before his big adventure
But we were short one cat. Our cat, Boots, got out while at the cat sitter last week. I have looked for him numerous times, put up signs, notified animal control, shelters and rescue league. This morning I had a few minutes and was near our old house and wanted to see if maybe he had made his way back there. But the new owners were having appliances delivered in big trucks which would scare him too much so I left.

Then I had a doctor appointment and decided to make one more trip down to the cat sitter's neighborhood. I called Boots and he came running. I grabbed him and put him in the car. I had a can of cat food and the cat carrier with me so I could feed him if I found him. I also gave him water.
After his big adventure
He is skinny. He is a little more skittish. And he is exhausted. I need to check his paws to make sure they are okay but otherwise he seems fine.

I was extremely stressed about him being gone. I did not want to give up on him but was also concerned about what if we never found him. I could not forgive myself for that.

Stress is hard on me. I can't sleep when stressed. I have enough problems sleeping with insomnia and pain I had started skipping meals because of stress. I am happy to lose a few pounds but that's not a good way to do it.

Now I can relax and focus on unpacking and taking care of me again. I know I just posted this all on FB so if you read it there already you can ignore this whole post. This just shows how stressed I was.

Wednesday, January 13, 2016

Advice for the newly diagnosed

Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.

Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.

Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.
  1. Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
    There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
    Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options.
  2. Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
  3. Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?. 
  4. Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
    Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. 
  5. There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.
I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different. 

Tuesday, January 12, 2016

Twenty Four Seven Medical Care

It has always aggravated me that if you get sick on a weekend you either wait until Monday to see a doctor or end up at the Emergency Room which is the wrong place to be unless it is a true emergency. And the horror stories of the surgical errors over the weekends because the only surgeon on call was two hours away.... I will admit that this has improved in recent years with the advent of more walk in clinics and longer hospital hours. But, we get sick and stay sick 24/7/365.

And the worst is having to wait all weekend for test results. Why can't someone read the damn test results and tell us on Saturday instead of making us wait until Monday for an answer? Any cancer person is familiar with this issue

Forbes Magazine wrote an article recently on New Year's Resolutions The Key Players in Healthcare Should Make. This issue shows up on the third page, after recommendations for doctors to improve their practices and synching electronic medical records.

So why do hospitals essentially close down on weekends? I completely understand administrative offices working a five day work week and the convenience of having all the staff available at the same time for better communication, yada, yada, yada. But why do medical staff also work only Monday-Friday? We don't just get sick between 8 and 5 on Mondays to Fridays?

There is always the complaint about too many patients coming in. But what if the hospital hours for medical care were stretched over seven days instead of five? The staff could still work the same number of hours but just over a longer period of time. And if you get a medical test, you don't need to wait for someone to read the damn report. If you were admitted over the weekend, you don't need to wait until Monday for surgery to be scheduled. I can go on.

'Bankers hours' medical care should be a thing of the past. The only people who benefit from being hospitalized over the weekend is the hospital - they get to bill the insurance companies for more nights' stays. Wouldn't it be better for the patient to be operated on over the weekend and then get out of the hospital?

What if hospitals were open for care half the time instead of a quarter (five nine hour days = 45 hours/week or 26.7%) of the time? What if hospitals were open 7am-7pm Monday - Sunday? Waits for appointments would be shorter. More patients could be treated. Patients who work full time could see doctor's at more convenient times. This is only 50% of the time, not 24/7/365 but its a big step toward more access.

I know this would require more staff but then hospitals would have less down time and would operate more efficiently and their expensive testing and surgical equipment would get used more and therefore be more profitable. And the patient's would be better treated and less stressed - quicker access to care and more information on their conditions.

Just an idea... I'm just a professional patient who hates waiting to find out the answers.

Monday, January 11, 2016

Connect the Mind with the Body

The 'all-powerful' insurance companies have been mandated by law to cover mental and behavioral issues the same as physical ones since 2008. But just because the law says so, doesn't mean this really happens. (Didn't I just blog about this? I did, yesterday. And then today's Boston Globe has an article on this very subject.)

The new way of health care payments, the global payment system, may actually lead to better care for the emotional side of treatment. The payments are made per patient and not per treatment and an emotionally healthy patient is probably better at managing their medical treatments.

"The hope is that global payments are providing incentives for insurers and providers to finally raze the longstanding wall between mental and physical health care, since reimbursements are based on patient outcomes. Potential benefits are obvious — people suffering from both diabetes and depression, for example, would be more likely to consult a doctor for diabetes treatment if their mental outlook improved. Conversely, depression might ebb in patients who keep their diabetes under control."

For anyone who went through chemo, didn't you just have some days where you were too tired and too sick and too sick of being sick to want to go through chemo and someone had to persuade you to go?

So maybe with this global payment system,which is not yet perfect and shows some gaps for some patients, will help with this. At this point, I am happy that I am not the only one who cares about the emotional side of being sick.

Sunday, January 10, 2016

The Big Gap in Treatment for All

Someone said something the other day that hit a nerve for me. 'How well do you think the emotional needs of patients are met?' And I started thinking.

When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.

When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.

When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.

No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?

Saturday, January 9, 2016

Too busy to worry about my health

The upside to my horrible week is that I have been too stressed about house buying, having a cold, a missing cat and everything else to worry about my major health issues. My cold has made me feel too crappy to care much about back pain, or fibromyalgia, or rheumatoid.

My biggest problem today is that I cant find any socks. I had to wear my husband's socks today because all my socks are either packed or in the laundry. Speaking of which, I haven't done laundry in over a week. Hmmmm..... Another project for the afternoon.

And this week I see my back doctor where I will be forced to lie and say I haven't lifted anything..... Drat. I try not to mislead my doctors. I believe in the telling the truth as much as possible, especial with medical people. My health is too complicated not to.

At end the week, I go to the periodontist. I cant wait.

Friday, January 8, 2016

One heck of a week

I haven't been blogging because I've been a little busy, to say the least. Yes I still have a cold. It keeps lingering which doesn't help anything. And it means I can't go to the gym and work off the stress.

During this week we have had all kinds of fun:
  • The buyer of our old house's lender wanted documentation that doesn't exist. We had to jump through hoops to get a letter from the town on something that no one has ever asked for, ever. Our broker came through on this. But it cause a lot of stress, starting New Year's Eve.
  • The buyer of our old house's broker is an idiot. They didn't understand there was any reason to do anything helpful, or have someone keep on top of things while they went out of the country for the holidays.
  • The seller of our new house's broker is also an idiot. Although the seller was legally required to ensure that the house was maintained and snow removal was taken care of after they moved out a month ago, nothing was done. The broker blamed the seller for not making plans and then dumped it all on the seller's attorney to get it taken care of. I met her and I could tell she was more concerned with how she looked than actually touching anything. She never even tried to call a plow service, she made the attorney make the calls. And the attorney bitched about it at the closing.
    Because we had a storm last week which snowed and switched to rain and sat on the driveway untouched, it turned into a glacier that my husband spent hours salting, sanding, and chopping yesterday until a plow finally showed up. I told them we would go to the closing but not sign anything until we had proof the driveway was clear (so the movers could get into the driveway today). We were late to the closing because we needed to go see the plowed driveway ourselves.
  • Finally, we took our cats to a cat sitter for the duration of the transition. One of our cats, Boots, got out some how. We found out yesterday morning that he has been missing since Wednesday afternoon. While my husband was shoveling snow yesterday, I was walking around near the cat sitter looking for him. I am going to head out this morning to go look for him in another neighborhood near by where there might have been a sighting. 
But finally we own a new house and are moving in today. The POD will be dropped off this morning by 10. The movers are coming between 8-830. Verizon is coming between 11-2 and the hutch we purchased will be delivered between 330-4. But I need to go find the cat.

Oh, my lymphedema arm is not happy with all this moving business. I might have actually carried things and am feeling it in my arm. And all my sleeves are packed so I have to wait until I can unpack to find one. but I have been doing my exercises which helps.

And my cold is still hanging in there. Yes I will go to the doctor if I am still sick on Monday.

Wednesday, January 6, 2016

When is a cold not just a cold?

When your immune system is compromised. That is when. What did you think I would say? The flu? Well that too.

In the middle of all this moving chaos (we hope to sign lots of papers tomorrow and are staying in a hotel for 3 nights in transition), I have a cold. Not a very good cold either. I feel like crap. Last week I had the flu. Before that I thought I had an ear infection.

Chronologically its this: On Dec 11, I went to the doctor because I thought I had an ear infection. The doctor said they weren't sure it was an ear infection but because of my medical history (my favorite phrase - NOT), they gave me antibiotics. I felt better after a few days but never completely well.

Then on December 23, I woke up with the flu. The kind of flu where EVERY joint in your body hurts and you are running a temperature for two days. I stayed in bed and took my temperature and pretended I was getting better.

Finally on January 2, I developed a scratchy throat which turned into all kinds of congestion and a nose that runs like a spigot. And here it is on the 6th and I am still not better. This isn't good.

Tomorrow is buy-and-sell-a-house-day. If I could, I would stay in bed and watch bad Lifetime Movies and not go anywhere. But since we are in a hotel and I have to sign lots of things, I will pretend I am healthy.

Friday is get up at the crack of dawn, check out of the hotel, stop and grab breakfast on the way (before the sun rises at 7 am) and head to our new house. Then after the movers get there and we give them a tour of what goes where, I will drive down to our old neighborhood and pick up the cats around 9 am and come back so I can watch everyone else do lots of stuff and be decorative. I hope my husband puts our bed back together so I can sleep - after the movers leave and the cable guy does his thing).

Finally Saturday I can begin to try to take care of myself. Maybe. A normal person wouldn't be sick this long. Its just my immune system and health crap that doesn't heal up anymore.

I'm not whining. I said I wouldn't use my blog as a place to whine. I am just trying to cope. And if I go to a doctor, I am sure they are gong to tell me to do things like drink fluids, take OTC medications, and get lots of rest. Things I don't have time to do until we move.

Don't you wish you were as healthy as me?

Tuesday, January 5, 2016

Persistent hope

Every day I get deluged (or so it feels) but an unending heap of emails. One of my subconscious goals is to get an email for a cure for any one of my ailments so I check them all with a glimmer of hope.

Today I got an email from Medivizor titled "What is the recommended treatment for patients with hormone receptor positive breast cancer". I quickly leaped to read it.... And was immediately disappointed. Perhaps I had hoped for a new cure, or to find out that there was a new treatment to prevent recurrence, or some other miracle.

But no, it was only the release of information that I had previously heard: Tamoxifen is recommended for 10 years for premenopausal women with ER+/PR+ breast cancer or for five years plus up to five more years of an Aromatase Inhibitor such as Aromasin or Femara. Damn.

Hopes are dashed for today this morning but will reappear the next time I check my email.

Monday, January 4, 2016

A resolution

I have a resolution finally for the new year: I will stop using my blog as a place to whine, especially about moving. I use my blog to write about issues which matter to me which recently has included a lot of whining about moving.

Whining about things never really helps so its a non productive waste of energy. I have many other things I could waste my energy on - like going to the gym. That might help lower my stress levels it since I have a cold still again, that's not happening any time soon. That may be part of my problem. I have had a cold or ear infection or flu since the middle of December. And our moving is causing a huge amount of work and huge amount of stress. And more work and more stress.

I could blog about my health - I mean that is what my blog is supposed to be about, not about whining.

Whining is also a pretty negative way of coping. I need to cope positively, not negatively. Once the road to negativity starts, its hard to get back on to the sunny side of life positive side. Its a slippery slope and I need to stay on top of it.

I did blog about coping and sense of humor a few weeks ago. I need to get back on the humor side. I need to laugh at the crap life is dishing out more often. My husband did laugh at my hair this morning - which is helpful after a night of little sleep

One resolution is all I need for this year.

Sunday, January 3, 2016

Being an adult or cleaning the oven

We all have our quirks I know. I just have a fear that the stove will blow up if I clean the oven. The oven gets so hot and smells. I won't run the self cleaning feature overnight or leave the house while its running.

I have memories from my childhood of my mother cleaning the oven with those really nasty toxic chemicals. They smelled, they foamed, and then you were supposed to just wipe out the oven - using a sponge which would be immediately thrown away and wearing giant yellow gloves because it was so nasty.

After college, I lived in several different apartments with room mates and occasionally would break down and clean the oven. None of us ever wanted to. I mean, its probably one of the least fun tasks on the planet. I have a friend who jokes that instead of cleaning the oven, she moves - even if it means buying a new house, or a new stove.

I learned to compromise. I just kept a piece of foil in the bottom of the oven and another on the lower rack to catch all the spills. Then with an occasional wiping out the bottom and cleaning the window periodically, I was good to go for years.

Then along came self cleaning ovens. They were a huge advantage. You could skip the chemicals and let the self cleaning part work all by itself. But its smells like something is burning and might set off the smoke alarm. And I am never comfortable.

I kept using foil. Its worked just fine. I never clean the oven. I hate using the self cleaning feature, I always feel like it will catch on fire or something.

We are moving and we need to leave the house 'broom clean'. I have accepted that this means the oven needs to be clean. So this morning, I woke up and figured out how to self clean our seven year old oven. It took me a minute but now its cleaning itself right now. But it smells like a burned out potato skin and the house is filling with smoke.

But I am being an adult and facing my fears that the house will not burn down. We all have our quirks. And I will call my friend later today and tell her I finally cleaned the oven, because we are moving.

Saturday, January 2, 2016

Exercise for RA Pain

I go to the gym three times a week and get in my hour of cardio. But I am not out to break speed records nor do I set the bike or stepper for great resistance. I want to get my heart rate up and benefit from regular cardio exercise.

Now a new study has come out (because we need more studies) that says that 'Rigorous Exercise Could Aid Rheumatoid Pain'. The researchers had the subjects go through high intensity interval training such as spinning. The subjects benefited from reduced weight and increased oxygen saturation but not increased pain.

Frankly the idea of trying that kind of exercise petrifies me. I have never tried spinning, even when I was healthy. It just looks too intense for me and has never really interested me.

I realize a lot of people when diagnosed with rheumatoid or other autoimmune/chronic ailments cut back drastically on their exercise. This may be because of actual or anticipated pain. I cut back on my exercise plan because I couldn't finish it. But I still kept my hour of cardio. It was suggested that I cut back. I ignored that (yes I have been known to ignore advice I don't like), feeling that if I can keep up exercise as much as possible, I will.

I have good and bad days with pain. But the idea of overexerting myself has no appeal. I mean sometimes I do things I probably shouldn't - you can ask my husband about this. The problem with over exertion, whether its running too many errands or just packing too may boxes, is that I pay the price for a few days after. So you won't catch me in a spin class.

Friday, January 1, 2016

Comparing Stress Levels

Since my second cancer diagnosis, my benchmark for my stress levels is my reaction to bad news and how I handled my diagnosis news. Yesterday I almost hit that level again. We were just notified at 5 pm on New Year's Eve that our carefully choreographed house move next week, may be delayed, because of a problem on our buyer's end. The real problem is that due to the holiday weekend, we are stuck in a stress filled limbo through the long weekend.

When I read the news by email from our attorney, instantly the stress level hit me and I felt nauseous and overwhelmed. That is similar to how I felt at diagnosis.

Stress can have a huge impact on my body. I used to be able to measure my stress level by eating - I'm a stress eater. Somethings required a candy bar and others required ice cream every day for a bit - neither of which were good for my body. Sometimes long term stress made me go for a long walk daily. This is a more beneficial way of coping.

After cancer two, stress would lead to stress eating but as stress levels increased through surgeries and treatment, when faced with potentially very difficult issues I would get to the point, where food wouldn't interest me at all. Last night I felt gut punched and had to calm down a little to relax to eat dinner. By that measure my stress level was nearing my cancer 2 diagnosis stress level

I am still feeling the stress. I did not sleep well last night - gee I wonder why? Today, the most important thing I need to do is get more packing done. I am not motivated at all. The real problem is that I do not see an end to this stress.

We will probably not have answers until Monday, 3 days from now, and will probably face delays in moving. So all our plans will be messed up and we will have to scramble to reschedule everything - the movers and the POD delivery to start. And find a new cat sitter. And extend our cable service at our current home. And change the schedule for new cable and gas/electric service. And make new hotel reservations for our transition days.

Stress sucks. Maybe I'll just quit eating.