Americans united against big pharma

Sometimes I wonder if I am the only one who doesn't approve of  big pharma. And now it turns out that in general more of us disapprove of big pharma and think they are ripping off patients who rake their prescription medications. Its nice to know I am not alone in being critical.

You can read the article here. Big pharma companies have a lower favorability rating than the erect of the healthcare industry, airlines and banks. And only slightly more favorable than oil companies.

Back to work....

Today I am back to work after almost three weeks off. I had to dig around to find a pair of pants and haven't yet found my shoes. Summer vacation means shorts, sandals and sneakers, not long pants and work shoes. Our lunches are made (yes I make lunch for both of us every week day) but the nice cat is out so I have to get him back in before leaving. The evil cat is busy plotting our demise....

Yesterday I had a good PT appointment. The therapist thinks that I probably didn't damage any major ligaments and probably only the meniscus, which sometimes does not require surgery. It depends how it heals and how badly it was damaged.

Also my rheumatologist thinks I am doing pretty well - this means no blood work for two whole months and no follow up for three months. Sometimes I have blood work every two weeks and appointments every six weeks so this is much better.

Finally my therapist is an idiot. Okay maybe a little harsh but she doesn't seem to understand my family dynamics so it  was a fruitless discussion. She may become my former therapist shortly. After every appointment with her, I wonder why I am still seeing her. But I try to manage the amount of change in my life and next week I see my new PCP for the first time. So the jury is still out but its not looking that good for her. The real decision is do I still need a therapist.

But now to find the cat and my shoes so I can go to work. Maybe they missed me....

Cancer language

I recently read about more offensive language of cancer. Where do people get these ideas?

I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.

I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.

I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must be stupid a miracle worker because there is no cure for cancer. Well okay, there are a few cancers that can be cured but definitely not all. You will spend the rest of your life being 'best buds' with your oncologist, endocrinologist, or so other specialist.

Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?

And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.

For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or  this patient is a breast cancer survivor'?

These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you. 

I am unsure

So I have had the same doctor for pain management, Dr G, for a good six years now because of my back pain and later fibromyalgia. We have had a good relationship and he has helped control my pain. I have always liked him and thought he was doing right by me.

I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.

I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.

L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.

Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.

I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.

I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.

We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.

More on change

As part of moving, we are looking at a variety of locations. The biggest requirement is that my husband's commute stays reasonable. Well the first requirement is that we buy a more affordable house. But my husband's commute is the other significant factor.

Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.

The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.

Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that  it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.

I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.

Grr. I just want the damn move to be over so I can get through the all this packing and un packing.

Keeping silent on health issues

I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.

Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?

But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.

A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.

Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.

Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.

Price gouging

That's the only term for when drug companies hike prices 5000 percent. One drug went from $13.50 to $750 (no I am not missing a decinal point). Thats a big price increase. I could not believe it when I read the article.

"Although some price increases have been caused by shortages, others have resulted from a business strategy of buying old neglected drugs and turning them into high-priced “specialty drugs.”"

And its not just one drug, its several. So what happened to the old justification of the research and development costs are so high? There were no new development costs. Probably just marketing crap, once again.

My doctor appointment yesterday

Yesterday I saw my knee surgeon. He operated on my right knee, formerly known as my bad knee, 15 years ago. He and his physicians assistant are very nice and have a good sense of humor, which is the most important skill any medical professional should have. I admired his tie - a Jerry Garcia. His PA cracked jokes and made fun of my use of my bad knee to climb up on the table. She told me I was supposed to lead with the good knee.

They both poked and prodded my knee. Physical therapy has helped but not enough and it has been giving way on me.

I did ask which knee was my good knee now. The doctor said the left knee was catching up to the right one (which has two meniscal tears and a partially torn ACL). He thinks there might be a meniscal tear in the left one now to go with the osteoarthritis in both. And he thinks I am too young to need a knee replacement yet.

Before leaving the doctor said does it hurt when I push here on the back of my knee? As I levitated off the table in pain, he decided it was time for an MRI and to come back and see him after.

The last thing I need in the middle of moving is knee surgery.

We have nothing to fear but fear itself

I have learned a bit more about Jackie Collins and keeping her breast cancer quiet. It turns out she could feel a lump two years before she went to a doctor. She told People magazine shortly before she died that she was scared to tell her doctor because of her family medical history.

I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.

The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.

And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)

What would you do?

This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:

"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"

My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?

Personally I find  the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.