I was unenlightened

I broke down and called my rheumatologist's office yesterday about the bump on my arm (not on a log). The problem was who to talk to.

The nurse practitioner I saw a couple of weeks ago is on vacation.

The rheumatologist I saw first left and I have not yet met with my new rheumatologist

I ended up talking to the physician's assistant who has never met me. We will meet on Thursday afternoon.

He did tell me it sounds like a rheumatoid nodule - I said that I am rheumatoid factor negative and statistics say I should not be getting nodules. But I did switch to injectable methotrexate which could be what caused it so I might need to switch medications. But with my medical history I can't take a lot of them.

He did also say it could be a ganglion cyst which could be drained or removed. Oh but since its my lymphedema arm there may not be any treatment options for me.

Which means I  may be SOL. Crap.

I am focusing on this because I am ignoring next week's assorted tests that I would prefer not to think about.

If its not one thing, its another

Friday I noticed a little bump on the side of my wrist that appears to be on the end of one of the bones in my lower arm. It is solid and hurts. I had noticed some previous pain in the area but since I always have pain somewhere, I didn't really think about it.

Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.

I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.

Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.

I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.

The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.

Meet my oncologist and her cookbook

When I was first diagnosed with breast cancer I had an oncologist who I really liked. He was nice and would explain numbers and statistics to me and give me detailed explanations on treatment options and why he chose one over the other.

At the end of my active treatment phase, he left. He was not given permission for this and I was upset. One big trauma point for cancer patients is when the active treatment portion ends and the come back and see us in six months starts. They go from caring about every sniffle to 'see-ya!'.

I was pretty stressed about the change and did not know what to expect from my new oncologist. But I was pleasantly surprised to find out how nice, compassionate and caring my new oncologist was. Over the past five years I have gotten to know her more. I have seen her speak at events as well as met with her individually.

Now I learned something more about her. She, along with other doctors, has written a cookbook for cancer patients. Now I have to get a copy of it. It is a book for people in active treatment. Its not that I am planning to go back into active treatment but I am a cookbook junkie and I am sure it will be full of good, healthy recipes.

If you are looking for a new oncologist in the Boston area, I do recommend her.

I do have a healthy body part

Yesterday was a relatively normal day in my life. I went to Costco, went for a walk, and then got my nails done. Aren't I exciting?

Later at the salon they had a special client appreciation event where they did hair treatments, make up, had a pop up store for consignment clothes, food, awesome fruit punch (with a bottle of Absolut on the side but I did not partake).

While I was getting my nails done, they were setting up the popup store - note to the woman in a blue dress: while your dress may be vintage and pretty, it was not appropriate for setting up racks (we did see your underwear THREE TIMES) and I believe it (the dress  not the underwear) was on backwards. It was loud and ended up being fun.

Then I got my make up done. I will probably go back and buy some of it because it stayed on, was not uncomfortable, and made me look better. Or maybe I should just start wearing the make up I already own.

But then I got to the good part where they found a healthy body part. My last visit was to get a conditioning hair treatment. One woman was designated as the technician who would do the treatment but another woman figured out which level of treatment my hair needed. Both of them said 'oh her hair is wonderful, its so healthy', I was over joyed as it means I have a healthy body part. Then another woman had to feel my hair and another. They all thought I had the healthiest hair and talked about it as if I wasn't there.

The woman featuring the hair product line they were promoting, thought my hair was so wonderful as well it barely needed any treatment.

I was happy. I left with my nails done. I was wearing natural make up so I looked good. And I had the softest, healthiest hair in town. So I have a healthy body part.

Doctors getting on the cost bandwagon

I have long been whined commented on the high price of medications. I find the high price of new medications combined with the laughable rationale given by the drug manufacturers ridiculous.

Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.

A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.

"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.

They suggested that charging a high price for a medicine needed to keep someone alive is profiteering, akin to jacking up the prices of essential goods after a natural disaster."

I like the word 'profiteering' for this price gouging. I mean, how do you justify these prices? If you do a cost benefit analysis as a typical business model, the company pays researchers for years to come up with the drugs. If you say 10 researchers at $100,000 (for easy math) and ten assistant researchers at $50,000 plus $500,000 in equipment for ten years, that would work out to $2 million a year or $20 million total. I know my math is not perfect but you get the idea. Even if I am off by a scale of 10 and the costs are $200 million for ten years of research. 

Then take a drug that costs $10,000 per month being taken by 5000 patients that is (pause while I find a calculator) $50 million per month in income. Or in four measly months, they have made back their $200 million. 

And even if my costs are off by another factor of ten and we are looking at total costs of $2 billion, they would still get their money back in forty months, or just over three years. Or if the drug is taken by 10,000 patients, they would get their money back in 20 months, or just over 1.5 years.

But I have digressed WAY OFF track. My point is I can't find any justification for the pharma industry's claims of high costs. And now the doctors are claiming them to be profiteering as well. Maybe we need a congressional inquiry - no that would be all sorts of waste of government dollars - but we do need something to make this price gouging end.

That was a bad day!

I don't like needles. You might have heard this from me before. I was very clear with my oncologist when I was diagnosed that it was not an option for me to self inject. Ever. Last week I was told that my RA is not responding to oral treatment so I need to switch to injections. I was a bit stressed.

I had no idea how stressed I was. Tuesday night I took an ativan so that I would be able to sleep and reduce some stress. Yesterday morning we had the teaching lesson with the nurse to learn how to self inject.

I woke up with hives, a knot in my stomach, and extreme stress. Hives? That was a bit extreme. I have only had hives from allergic reactions before. I might have been a bit whiney as well. Only a slim possibility of that. I even took  half an ativan to help me cope.

My husband went with me as he was the mere 'learnee' and I was the mere patient in this. We got there on time and had to sit in the waiting room where my husband's hand got a bit squished (only a tiny bit). And we waited. So I stressed some more. 

Finally the nurse came to get us. I was very nervous and told the nurse - there is no point in being nervous if you can't tell everyone about it. She said it was good to be nervous as that meant I cared about my health and was taking it seriously which is a good thing. It may have been a good thing but it didn't make it easier.

My husband learned out to put on the gloves, swab off my skin, fill the needle, etc. I got to ask stupid questions and be an idiot because I was nervous. I even cowered when the put the fake fat pad against my arm for my husband to pretend to inject me. I cowered again when he really did inject me.

There was a little pinch and it did burn a little. But I survived. I think.

I left to go to work and my husband went to his other doctor appointment. My stomach started to unclench. My hives itched a little less. But I felt better. It was over. Until next week when we go through it again with out a nurse to help. Crap.

If you don't have your health, what have you got?

Some of us look at the rich and famous, the Hollywood stars, and others and think they have it all. Beauty, riches, and fame seem to be everything.

But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.

"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."

Personally I think I am as healthy as a horse on the way to the glue factory.

It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.

But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.

Show me the data but don't charge me an arm and a leg

In the past the biotechnology industry enjoyed a cost and procurement system where drugs were provided at the cost set by the provider. Now there is change coming in the industry where the value of the drugs must be proven before being accepted. They now will be forced to sell good outcomes and at a lower cost.

While the industry stock levels are running at a long term high and the FDA has approved a record number of drugs, the winds of change are shifting on through. On Monday, there was an executive meeting at the Biotechnology Industry Organization convention in Chicago where this issue was discussed in detail. 

"The national health care overhaul, the shift toward personalized medicines targeting smaller patient populations, and tougher reimbursement standards by commercial health insurers in the United States and government payers in Europe are changing the game for biotechnology start-ups and pharmaceutical giants alike, Burrill said.

“We as a health care system are at a pivotal moment,” said David Meeker, chief executive of the Genzyme division of Sanofi SA in Cambridge. “Economic growth in the Western world is negligible to negative. Everyone’s taking a hit. That’s translating into increased pressure on health care spending. The trend is to spend less.”

Drug makers once could count on a straightforward regulatory process and automatic reimbursement for approved medicines. But the process for getting experimental drugs to market has grown longer and costlier as regulators demand more patient-specific data before granting approval. At the same time, payment regulations have become more variable and less certain.

“The payers used to just pay,” Burrill said. “Now they want proof that drugs can improve outcomes and lower costs. And the way you do that for the French versus the way you to it for the Chinese versus the way you do it for Aetna or Kaiser Permanente is all different.”

Industry executives discussed the new dynamic at a Monday session on “pay for value” in the drug business, but there was little agreement on how to define the value of new medicines."

Payers are demanding more data showing benefits before covering them. Manufacturers are creating more and more drugs for smaller populations - for the rarer ailments. Insurers are also reluctant to pay for new expensive drugs to treat common conditions such as diabetes or heart disease.

These changes are causing pharma companies to look at how they do business and partner with other companies, particularly smaller ones, to reduce their risks. I hope to see this continued change s that medications become more affordable and insurance companies are not denying new drugs  because the costs are too high. The doctors should be the one making the decisions on which medications are appropriate for their patients, not the pharmaceutical companies nor the insurance companies.

Breast cancer risk reduction

There is a new trend in women who are deemed to be  at high risk for breast cancer to have a prophylactic bilateral mastectomy. A mastectomy is not minor surgery and comes with its own set of risks. Women who then want reconstruction can be faced with months of additional surgery as well as the issue of implant replacement later in life. Other side effects can linger such as lymphedema for a lifetime.

A new government task force (who is spending our money on these things) announced that high risk women should consider taking either tamoxifen or raloxifene to reduce their risk. While the drugs carry their own risks, they also can be stopped. A mastectomy is irreversible.

I realize this is a very personal decision and emotions can rule the decision making process. Perhaps this study will help women not make such a drastic step.

Misconceptions about breast cancer risk

Last night we had dinner with a friend who's mother had breast cancer more than 15 years ago. She was talking about her concern about getting breast cancer. I think both her grandmothers and a couple aunts had breast cancer. Several of them had bilateral mastectomies. This is dating back decades to the 1970s and earlier.

She has not been tested for the BRCA genes because it would require her mother to be tested and she didn't want to put her mother through that. That was probably 15 years ago and she hadn't asked since. She was very concerned and sounded like she was sure she would get breast cancer.

I asked her a couple questions. What stage cancer did all her relatives have? She had no idea. She thought they were relatively advanced because of the bilateral mastectomies. But those were done in the 1970s when more radical surgery prevailed.

I also said that the BRCA genes only account for 5-10% of all breast cancers. But I did suggest that even though she was told years ago that she would have to have her mother get tested for the BRCA gene first, maybe times had changed and she could be tested now. She is going to ask her doctor about that now.

Her other comment was that there is cancer on both sides of her family and both her parents had cancer which further reinforced her thought that she would definitely get cancer. 

I was somewhat surprised at her misconceptions that she was sure she would get cancer because of her family history. Yes she is probably at higher risk than the average population of getting cancer. But there is  no reason to think she definitely will get cancer. And with regular mammograms and annual physicals, anything would probably be caught early.

I think this is a case of her mind getting ahead of reality. You start thinking well everyone else got cancer so I will too and I'll die some kind of horrible death as a result. I hope I was able to reassure her that she is doing the right thing and cancer is not a certainty for her.

Paying the price

Yesterday, I had a lot of fun (and they caught the last bomber) and today I am paying the price.

I got up and went to the gym early so I could get to my doctor appointment before playing hookey. After working out, I checked my phone and found that my doctor had cancelled. She lives in one of the towns which were in lock down. So we got a slightly earlier start.

We went to Portsmouth, NH and had popovers and breakfast. Then we did some shopping. I really like my new orange fish planter - my husband thinks its weird but he'll have to get over it. Then we went to the outlet stores and I finally got a Le Crueset pan that I have wanted for decades. Then we went to the garden center and the butcher shop.

I came home and was exhausted. My husband cooked dinner.

Today I am really tired and will take it easy all day.

Playing Hooky

Yesterday I posted about my crappy week. It got even better. After working until 230, I rushed to a dr apt and then rushed home to a meeting that last until after 6, and then got THE call. 730am on Wednesday 4/24 we will get a lesson on delivering medication subcutaneously. What that means, they will expect me to stab myself with a needle. I will need an ativan for that.

The news this morning is all about the shootouts overnight to track down the Marathon bombing suspects. One is dead, one is on the run, police officers are dead. These guys are armed and dangerous. The subway and bus system is shut down city wide. Some towns people are being told not to leave their homes as cars are not allowed on the street. They are looking for a suspect and more explosive devices... Great.

Last weekend, a friend asked me if I wanted to play hooky for a day. We selected today. I had no idea last weekend how much I would appreciate a day of hooky. I can't wait.

In a few minutes I will go to the gym and work off some stress. Then I will go to a dr apt and then meet my friend. We will zip up to a small city on the ocean and enjoy the day - we are supposed to hit 70 - and have some lunch, maybe a little shopping, who knows. I need to get away and avoid all this.

I hope this is all over by the time we get home so life can resume some normalcy.

This has been a bad week

This has not been a good week for me and a lot of other people. First off all, the marathon bombing on Monday turned lives upside down. And it seems to be the only thing on network television these days. All my regular shows I record so I don't have to stay up late, have been superseded by more news coverage showing the same things over and over again.

I have a very busy schedule this week. I had a meeting after work Tuesday that went relatively well. I met with my boss at the job I am leaving to talk about transition and was pleasantly surprised to find out they have two replacements for me - which is good for them and makes it easier for me to train people instead of leaving lots of notes.

Yesterday I went to work where there has been a fair amount of stress going on as well. Also, I was out last week so we can just say I have piles of things to do. Then I had an appointment with the nurse practitioner in rheumatology. I had hoped for a quick appointment and a quick trip to the gym before getting my hair cut.

Instead I had a 45 minute wait to see the nurse practitioner - stuck in a waiting room with a giant flat screen tv focused on the bombings and then the federal court house had a scare and was evacuated so all the newscasters could do was conjecture about what was going on and patients and medical staff, kept asking questions. I could not ignore it.

Finally I met with the nurse practitioner and we talked about my tiny medical history before the bad news started. Methatrexate is not working well for me. I can't take the biologics that are TNFs - tumor necrosing factors. This means I will never be able to Humira, Enbrel, and that whole class of drugs.

There are still options available for me that are not the big names but they all involve needles. I have a real problem with needles. My husband said he would help. We will go meet with a nurse and get instructions at some point. (And then he told me last night he didn't really like needles either - I don't think he has a choice in this because I am not sure I can give myself injections.) But that will be next week and I am not worrying about it today.

The one advantage to injecting methotrexate instead of taking it orally is that it is easier on your digestive system. This is good because last night after taking my pills, including my weekly dose of methotrexate, my stomach turned into a giant knot and caused a lot of pain. So I ended my crappy day in the bathroom in a lot of pain.

I just have to get through today and then tomorrow I am going to play hooky with a friend. I need a day off.

Semi retirement

As a result of my health disasters changes through the past six months, I am going into semi retirement. This does not mean I am going to stop working completely - SEMI retirement only. Instead of working two jobs - one 20 hours/week and the other 18 hours/week, as of May 10, I will work one job 18 hours/week.

It was a big decision that I really thought about. I had to choose which job to leave. I made my decision based on the fact that one job is completely 9-5 and the other job requires nights and weekends and running around town picking things up, delivering things, attending events.

I cannot go from one job to the other job as I used to. These days, after one job, I need a nap and to rest for a few hours before making dinner. If I overdo things, I am in pain for days. Pain makes me cranky. My husband hates it when I'm cranky. It also means he has to cook dinner more often han h e wants.

I have a month or so to go for this transition. I am happy to know that they do have replacements for me.One of my big concerns was how would the organization handle my leaving? I know I provide a lot of the day to day energy to it and without me, it could take a big hit.

It took two people to replace me but that is probably better for the Center in the long term. One person starts right around my official last day and the other one starts a few weeks later so I will be available to help with training and explaining so they Center can do well.

Some day I  may be better enough so that I can go back to more work but for now I have decided this is what I need to do. I am not retiring, I am semi retiring where I will still work, but have more time for doctor appointments and naps.

What a tragedy yesterday in Boston

It was a normal Marathon Monday for me where I watch the wheelchair races and lead runners on TV and then move on to other things for the day. I did a little gardening and went to the gym. While I was at the gym, everyone started watching one of the TVs and started talking.

That was when the bombs had gone off. One woman, her son in law was at the finish line, was very concerned. I knew my sister and brother in law usually volunteer for the marathon - they were at the start line, not the finish line. I heard from two other friends who were about 200' away from the explosion giving water to runners when the first explosion went off. They are fine but stressed.


What a horrible thing that someone or some group did. What were they thinking? What was so important that they felt they had to get their messages out by destroying a family friendly event on a beautiful day? They killed three people, including an 8 year old, and injured over 140 - including two brothers who both lost a leg in the explosion.


There is no rhyme or reason for this. To whoever you are that did this, there is no punishment equal to this kind of crime. But I hope your conscience makes the rest of your life miserable.

Breast Cancer Patients Go to Washington

Today is a big day. Around here it is Patriots Day which means there are parades (mostly yesterday), Revolutionary re-enactments, pancake breakfasts, award ceremonies, a little road race called the Boston Marathon, and a minor hint of spring - its a tropical 32 degrees right now.

In Washington DC, its typical pomp and circumstance, the ego battles, and political denials, as well as oral arguments in the Supreme Court on the patent-ability of human genes and the genome. The ACLU, breast cancer patients, scientists, Biotech companies, and more are all meeting together to hear the oral arguments and then the Supreme Court will make some big decisions.

At the root of the matter is are human genes and the genome patentable? They have been awarded patents in prior years. For example, Myriad Genetics patented BRCA1 and BRCA2 genes using the grounds that they isolated them so they should be able to patent them. Then they developed the breast cancer BRCA tests which they sell for a paltry $3340 and have earned $2.1 billion on these tests. They want to retain their patent because it makes them rich. Some scientists say the gene patents allow them to earn money from their research.

On the other side,  people like the ACLU say they are naturally occurring and therefore should not be patented. And that the patents actually restrict research.

Personally I don't think naturally occurring things should be able to be patented. Does someone want to patent the crab grass in my lawn? Then they can pull it out because I'm not going to pay them for it (free weeding).

Maybe they can patent the tests that are done using the genes but not the genes themselves. Other people could then patent their own tests and there would be competition and someone wouldn't be $2.1 billion richer on a test that some insurance companies won't cover because of the cost. (Patients first please.)

Medical research often includes genetics and molecular level testing these days. Our legal system needs to catch up to current scientific research. If genes are patented, will we have to start tattooing their bodies to show where other people own bits and pieces? What if someone patented the human heart, would they get a fee every time someone had heart surgery. Let's think rationally here.

I get so confused on all this progress business

I saw this video and thought 'wow this is great news, more progress in treating late stage breast cancer'. Then I started thinking, did I see a different article on this new drug before or is a new one that I hadn't seen before. I get so confused.

I do think this is progress but I don't know if its 'new to me' so to speak or if I did blog about it previously. Well, either way its a nice story and its nice to see progress. But further testing is needed, its only available in clinical trials, and more trials may be required so it is still months or  years away from being available.

False positive test results

One of the complaints about annual mammograms is the possibility of false positive results. They can cause emotional trauma years later.

Any false positive test result can be very scary. I am very sympathetic to this. No one wants to be told they have something 'bad' and to be told that they have something 'bad' and then be told that they were wrong, would be worse. But from my point of view (with my medical history) I can say having something 'bad' is infinitely worse than not having something 'bad'.

To understand my point of view, look at my medical history.

In 1981, I was told I probably had a goiter on my thyroid or something but they needed to operate to be sure because this was the time before biopsies. A goiter could cause problems in the long run so they went to take it out. Surprise, surprise, not a goiter but a tumor, and a malignant one to boot into lymph nodes as well.

Then in 1984, I had a breast lump. As I was already in the class of 'with your medical history, we need to be sure' and it was before breast biopsies, I had to have it out. I was happy to be told it was not cancer but a benign tumor. But I did get to stress through it.

Repeat regularly through the next 20+ years of 'with your medical history, we need to be sure'. I have had uterine fibroids that were 'sliced and diced' (to use my surgeon's words) to check for cancer after removal. I had that nasty mammogram in 2007 which led to all sorts of medical adventures. Then after chemo I had another tumor - how did that happen? (I am probably the only person on record to grow a tumor during chemotheraphy.) But it was benign. After a great deal of stress on my part.

I would not want to have a false positive mammogram or any test at this point but isn't it better to test and have the occasional false positive than to have people not be diagnosed until too late?

That battle thing

Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.

There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.

If you look at Dictionary.com we get:

bat·tle¹ [bat-l] noun, verb, bat·tled, bat·tling.

noun

1. a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
2. participation in such hostile encounters or engagements: wounds received in battle.
3. a fight between two persons or animals: ordering a trial by battle to settle the dispute.
4. any conflict or struggle: a battle for control of the Senate.
5. Archaic. a battalion.

Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer. 

If one has cancer or other ailments, they are not participating in hostile encounters or engagements. 

If one has cancer or other ailments, they are not fighting with another person or animal.

Having cancer is not a conflict or struggle, its an ailment that is treated. 

And cancer has nothing to do with a battalion, even in old English.

Maybe because someone thought they made them stronger if they were battling?

Maybe because someone thought a battle or war is a better image than a person?

Maybe because someone DIDN'T think?

Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war.  Roger Ebert did not battle anything, he also was a person living with medical ailments as well.

What if your doctor sued back?

We all do it. We all complain and sometimes even compliment businesses and professionals we deal with. I always rate restaurants and attractions I go to (I'm going for my next badge on TripAdvisor).

Some people rate their doctors, dentists, and more. I haven't gotten that far. I do blog about my doctors from time to time but I usually keep a line of anonymity and privacy do not blast them using their name. I try not to be negative as a rule on other people.

This one man did blog about his unhappiness with his wife's doctor after she died from cancer. Then the doctor sued him for damage to her career in response. This isn't an isolated incident.

If a restaurant or hotel receives a bad review, they can go back and apologize below the review and proactively try to help the customer. Doctors can't do that. They are compromised by privacy laws and HIPAA restrictions.

I personally don't read reviews for doctors online. At my breast cancer diagnosis, I was and still am being treated at a local hospital where I am comfortable with the quality of care.

Everyone I knew was reviewing their doctors and medical facilities online and using those reviews to choose doctors and where to be treated. My doctors weren't listed so it didn't really help me. All it did was make me feel bad that no one had reviewed my doctors so how was I supposed to know if they were good or not.

Before I tried to look them up, I was happy with my care.

I have never reviewed my doctors either. I don't think reviews of medical providers do much good. There is too much emotion wrapped around  medical care. The man who blogged about his wife's doctor was upset his wife died, friends didn't visit, and regretted the surgery she had. It was an emotional time for him.

I admit to blogging about stupid neurotic co-workers, cranky doctors, idiot drivers, and many others. But I don't put their names in and it allows me to vent. I am not writing to blast others but to allow me to add my two cents.

As far as I am concerned its within my First Amendment Rights and I am not opening myself up to any lawsuits. And besides, I like my doctors and feel no need to review them now.

Just say no to cancer

This is the attitude we should all take. We should say no to cancer. Its not going to run my life.

Or through this link.

At my first diagnosis I said 'What the hell is going on with me?' and decades later had unresolved issues. You may call me a slow learner compared to Gloria Borges. It too me to my second round to be a bit more proactive.

Repeat after me: cancer will not suck the life out of me!

Why don't have I have a patient navigator?

I need a patient navigator. The idea behind a patient navigator is to help newly diagnosed people deal with the mysteries of all these new doctors, treatments, and help them through the process by being there as the go-to person. Its part of the new patient centered care which is a great idea.

An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).

My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.

The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.

If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)

What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.

So somewhere there are 18 other people who might be like me.

The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I  have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.

This is why I don't have a patient navigator.

I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.

*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03%  so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.

Napping is so underrated

Yesterday I took an hour and a half nap. Spontaneously. I mean I lay down to read a book and fell asleep solidly. The result was I woke up this morning at 330 and had a hard time getting back to sleep. I should stayed up later.

We have visiting family this week and are running around doing the things you do with out of town guests. Yesterday we did some Revolutionary War history - we live 2 miles from the Shot Heard Round the World. They do an annual reenactment at the crowd control time of 530am on Patriots Day which is next Monday, April 15 (as opposed to Patriot Day which is September 11). Yesterday afternoon was the dress rehearsal for the battle reenactment so they did it twice.

We wanted the British advance, curse at the colonials, insist they lay down the arms, and watched them die on the Battle Green and get tended by their wives and families - twice. But it was worth it. And we did not have to be some place by 530 am.

By the time we got home, we were all a bit tired and started to feel a little snoozy. I was the only one who slept.

Today we are off to do more tourist things - maple barn for brunch and some local wineries. I hope to make it to the gym later today but after wineries I might not be up for it. I might need another nap.

More about fibromyalgia.

One Minute Medical School on Fibromylagia, in case you were trying to figure out what it is.

By the way, I hate swimming so that's not happening.

I got promoted

I now have enough ailments, or an important one, that allowed my insurance company to nominate me to get extra personal care. AccordantCare, which is part of CVS somehow, provides an information library and personal contact with a nurse who helps with dealing with doctors, treatment plans, and just some one to call and talk to about health issues.

Due to my RA diagnosis and my insurance company's arrangement with them, I get this extra care. I think it could be helpful. In addition to the fact that my RA is still not under control, my rheumatologist is leaving and I am getting a new one, and its a relatively new diagnosis, I think I could use some help.

I feel sorry for the nurse who is going to call me thinking I just have RA. When I get done with her at the first call, going through my ailments, my prescriptions (I was in the category of more than 9 daily), and other issues, I think they might be a tiny bit overwhelmed. How quickly will these conversations turn into 'with your medical history, we need to be sure' conversations? (I hate that part.) I am sure that s/he will want to focus on RA which is fine but there is more to my health that just it.

I have a call scheduled with the nurse for a week from Monday so I'll wait and see how it goes. In the meantime, I will take my creaky body to the gym to see if I can get moving today.

Further proof that thyroid cancer is not a good cancer

Robert Ebert died the other day of cancer. He had both papillary thyroid cancer and salivary gland cancer. I do not know which cancer was the one that got him in the end and does it really matter?

People go around saying thyroid cancer is a good cancer. Its not. It kills people.

Here's a big oops!

A bunch of cancer patients in Canada received less than the specified dose of chemotherapy. Nearly 1200 patients in a group of medical centers and then 186 at another. Oopsy! They do not really say how it happened but its clearly a problem. Chemotherapy doses, I believe, are based on body weight. I think the dose you receive always starts on the higher side to see if its tolerated and then the oncologist can tweak it down.But if the oncologist does all their math and then the dose is too weak, that's a problem.

What is scary is this wasn't discovered until a pharmacy technician noticed it.

The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.

While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.

Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.

Put some cost pressure on the providers

Finally I think some pressure is being put on drug manufacturers to manage costs. There was a recent report out of the UK saying that the cost benefit analysis of everolimus, a new advanced breast cancer drug, led to the decision by the National Institute of Health and Clinical Excellence (NICE) to not recommend its use. 

Then another study in the US shows that the cost of drugs for Hepatitis C and Rheumatoid Arthritis account for more than 50% of the costs to treat those patients.

"In the first study, researchers found that despite the overall decrease in Hep C specialty drug use from 2008 to 2011 (17.2 percent vs. 14.1 percent), the Hep C specialty pharmacy total cost of care compound annual growth rate (CAGR) was 15 percent from 2008 to 2011. Specialty drug costs accounted for 35 percent ($13,332 of $38,055) of the total cost of Hep C care in 2008 and was substantially higher at 52.6 percent in 2011 ($30,415 of $57,799), with a CAGR of 31.8 percent. 

In the second study, researchers found that although RA drug use remained steady from 2008 to 2010 (34.6 percent vs. 35.4 percent), the total cost of care CAGR was 7.3 percent from 2008 to 2010. All other medical costs were $11,252 in 2008 and increased to $13,710 in 2010, with a CAGR of 10.4 percent. Combined RA medical and specialty drug costs accounted for $16,218 (54.7 percent) of $29,652 total cost of care in 2008. In 2010, total cost of care was slightly lower at 53.0 percent ($18,098 of $34,163), with a CAGR of 5.6 percent."

'"As the pipeline of expensive specialty drugs continues to grow, we need to stay alert to cost of care trends to make sure patients and plan sponsors receive the best value and can manage the increasing cost burden these treatments bring,"...'

We can't expect insurance companies to pick up the costs of these expensive drugs. Everolimus was priced at twice the amount of Herceptin. Nor can we expect patients to pick up increasing portions of the price. One of my drugs is $95/month co-pay.

This is an issue which warrants more investigation and pressure. Drug manufacturers have blamed research costs for their increasing product pricing. But has pressure been put back on them to reduce their costs in production of drugs. Perhaps they need to take a long hard look at their business practices. As more studies reveal the cost benefit discrepancies, somethings need to change. And it should not be at the expense of quality of life or of the lives of patients.

Cancer treatment in stealth mode

I find this fascinating. Stealth mode makes me think of spies, CIA, cold war, KGB, NSA, guerrilla warfare, covert operation and all that.

I found an article on Smithsonian.com, The War on Cancer Goes Stealth, which explains in detail what exactly they are doing - tricking cells, sneaking past the sentries, etc. I know it needs more testing and many researchers will be busy with this for a long time but treatments targeting individual cancer cells so patients can avoid chemotherapy and enjoy a good quality of life.

Here is a TED talk explaining it more with links to more talks on it here.


This intrigues me to no end. And convinces me I should have paid more attention in biology and chemistry (physics not so much) so I could understand it better. And it shows hope for a new wave of treatment that are not as harmful to the patient.

My only concerns are - how soon will this happen and how much will it cost?

Want vs can

As I have been cutting back in my life, I have run into some misunderstandings. There are people who think that I am not doing as many things  in my life due to the fact that I don't want to. But the reality is that I cant do everything I used to do.

I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on  one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.

I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.

Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.

So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.