Happy Holidays 2016!

Happy New Year to all and Merry Christmas or Happy Hanukkah! I hope you all are enjoying your holiday season!

On our end, the holidays are not very holidayish at all. But we are making do.

I got the flu just before Christmas. This meant we hibernated. And packed boxes in preparation for our move next week. I was pretty sick and running a fever over 100 for two days (even though I did get a flu shot) before starting to feel better.

For New Year's, we are having dinner at home just the two of us (which is what we like) and packing boxes. I am taking the car for an oil change and getting my nails done in celebration of the holiday. Aren't we exciting?

Our biggest problems are packing and moving. Its so much work. Every room is full of boxes and more stuff to pack. It is very difficult for me to get too much packing done. I successfully make my back hurt every day. This morning I packed three boxes and now my back hurts so I am taking a break.

The last time we moved, we had a lot more going on. My soon to be husband was mobilized and spending all his time at Fort Drum. We were planning a wedding. And we were house hunting. It was a little stressful. But the big difference was I was healthy.

Now I am not so healthy and packing is much more difficult. I am not allowed to lift things (but I admit to cheating a little bit - maybe that is why my back hurts?) which limits me quite a bit. Its not fun.

So we will have a small New Year's dinner and get plenty of rest so we can continue packing tomorrow.

Happy New Year!

PS We are never moving again. But that's what we said last time we moved.

Is that pain only in your brain?

I have been pondering this question for a couple of days. Some one posted a comment on my blog the other day and asked about this:

"How do you know when some of these pains are not in your head? I have mistook mental discomfort for physical problems."

I have often pondered this question for myself. Is what I feel real pain or is my brain making it up? How can I tell all my pains are real? Am I over treating my ailments? How can I have so much pain? I sometimes run little experiments with myself (don't tell my doctors!) to see how my medications are working and how my pain levels really are. Sometimes I just forget a medication and I often quickly find out what is real and how much somethings hurt. Other times I will delay taking my next pills and see how I am feeling.

I thought about this, hard. I know if someone has a limb amputated they often may have 'phantom' pains. The missing leg still produces feeling of pain even after it is gone. I know there are treatments for this as well.

But I also feel strongly that doctors should never ignore patient's statements on having pains. For years, male doctors often dismissed women's complaints on menstrual cramps. They were proven wrong. But if a patient complains of pains often and a doctor does nothing, you need a new doctor. 

However if its the other way around and the confusion is as the commenter noted above - mental discomfort being mistaken for physical pains - that is a different problem all together. In quickly asking the all-knowing Dr. Google, you can find that it is a recognized emotional issue that causes significant anguish.

In my non-medical opinion, if there is a question as to whether the pain is real or in your head, you would really need to do some personal and medical research, working with a good medical professional who meets your needs. Because even if the pain isn't real, there is still an issue that needs to be treated.

Traveling for cancer treatment

Yesterday while packing wasting time I was watching the local news. It included a story about a first grade teacher who has cancer and needs to go overseas for treatment. She has some kind of liver cancer and has run out of treatment options. In the video she says she is going to Germany for PRRT treatment which costs $100,000. As it is not yet FDA approved, she must pay out of pocket for it.

I was intrigued so I did a little research. The treatment she needs is PRRT or Peptide Receptor Radionuclide Therapy and is for people who have run out of treatment options with certain cancers. Sounds reasonable.

And of course I have a 'but' to go alone with this. The first article I found on it said there is a Level 3 Clinical Trial going on for it in the US and in certain parts of Europe. Then I went on clinicaltrials.gov and found more trials for it in the US, including ones for gastrointestinal tumors and lymphomas and more. I realize that to be eligible for a clinical trial you need to meet certain criteria. So maybe the teacher doesn't meet the requirements for one of the trials.

But if she can participate in a clinical trial, why does she need to pay for treatment? Wouldn't that make more sense than raising money herself (and through her students and other people she knows)?

I am not a big proponent of traveling overseas for treatment that does not yet have FDA approval. (Do you remember the people who went to Mexico for laetrile treatment in the 1970s?) Yes there is the thought that if you are told there are no more treatment options for you wouldn't you want to try anything? But maybe exploring more local options might be a good start.

I could be showing my cynical side again....

Maxed out

Every year it has happened since 2007 when I was diagnosed with breast cancer - we max out our health insurance out of pocket expenses. I just found out when I went to pick up some prescriptions the other day and figured out we hit our max on Dec 11. This is much later than recent years.

I didn't have any surgeries or anything major happen this year - except my knee injury. I had a total of 58 medical visits - this does include eye doctor and dentist - plus an additional 10 or so separate trips for blood work. This is the most appointments in at least five years. And I do hope this is not a new trend.

This is one measure of how (un)healthy I am. I go to the doctor at least once a week. So far I only have 13 appointments scheduled for 2016 - and I am sure this number will grow. In January, I have four scheduled appointments - that's one each week on average. Its a good thing I stopped working so I have time to go to the doctor.....

My medical finances may be maxed out but I think my tolerance for doctor visits is maxed out as well.

My cynical side is showing again.

Was I supposed to climb a mountain or something for some ailment awareness? I didn't. But apparently a lot of people do that kind of thing. You can find countless story about another person who climbed a mountain, ran a marathon, bicycled some long distance or did something significant to raise awareness for an ailment.

How does climbing a mountain help with an ailment? What are you doing on a mountain top that could do anything to help someone with that ailment? Other than let the person with the ailment feel disappointed that they could never do that any more? Please explain.

I didn't do any of that. I would never do any of that. Physically I can't. And emotionally I do not think those efforts are much needed. Honestly we do not need any more awareness of breast cancer. Period. For my other ailments, maybe some awareness could help. But awareness doesn't do squat.

What does help is research and treatment.

If you want to help with an ailment on a big level, raise some money for research and treatment. If you want to make the news headlines for doing something, raise a lot of money, send out a press release and invite the local media.

Or if you don't want to make any headlines and can't afford to spend any money, spend some time with someone who could use help. Is it a ride to a doctor appointment? Picking up their groceries? Mowing their lawn or raking their leaves? Or if you can't do any of that, drop by and chat or call them on the phone.

Skip the awareness crap and efforts, figure out how to go direct to the person coping or to research and treatment. Awareness doesn't do crap.

Keeping my sense of humor or coping?

Sometimes people ask me how I cope. I don't really know how I cope, I feel like I am muddling my way through life. Is that coping? Does that count?

The only thing I know I do do is that I keep my sense of humor as much as possible. If I didn't have a sense of humor, I would probably be insane.

My husband helps with this. He allows me to laugh at a lot of different things. And often at myself. At the right times. But he is also supportive of my ailments (even cooking dinner and doing laundry when needed) so I can live with that.

He likes to make fun of my morning hair. He tells me when I look like Yertle the Turtle when my hair sticks up. He tells me I am yertled. Daily. I can be in pain and achy and sore and he laughs at my hair. Sometimes he just says 'don't touch your hair, look in the mirror!'.

Right now I am recovering from the flu and we are into the last two weeks before we move. (And that rheumatoid and fibromylgia and bad back are so helpful during this.)

We finalized our countdown of what needs to be done room by room before we move. Its daunting. But we will get it done. Some how. And crack jokes as we go. Is that coping?

Ailments on a holiday

Today is Christmas and for Christians around the world it is a special day. Other cultures have their own special days - which should be respected just as much as the special days for your beliefs. Holidays are not a day to argue about which belief is better. Its a chance to relax and enjoy ourselves with our families.

It is not a shopping day nor a work day (unless chosen by the employee). Unfortunately the one thing that does not ever get or take a holiday is an ailment, especially a chronic one.

I have just a few ailments and am also recovering from the flu. After a night of insomnia (when I tracked Santa for a bit of fun on noradsanta.org) as well as lasting flu symptoms, I am a bit tired and possibly cranky as well.

I wish ailments would take a holiday from time to time. Shouldn't we be able to feel decent for a little while from time to time? It would be nice.

If you know someone with ailments who is not able to get out and spend much time celebrating the holiday, please take a moment to give them a call and chat for a while, even suggest a quick visit. (But never unexpectedly show up!!!! Us ailment people have a tendency to hang out in our pjs for longer than most and take naps.) Our ailments are persistent and we can use the company. So in the holiday spirit, take a moment to visit with those who would appreciate it most.

Who will pay for personalized medicine?

Inventors have faced this problem for centuries: just because you can make it, does it mean anyone will pay for it? And just because its possible, doesn't mean anyone wants it. Unless you can put some guarantee of a good result on it.

Personalized and precision medicine has been the buzz for several years now. But who is going to pay for it? I have never seen this discussed previously. I sort of assumed that someone would but never thought the process through. And what happens if the test result isn't a good one?

I just know I wouldn't be happy to shell out a few thousand without the guarantee that the results would lead me to a life saving recommendation. And what if I did spend the big bucks and all the result told me was that there were no good treatment protocols for me? That would not leave me a very happy camper at all.

Back to personalized medicine... What if no one wants to pay for it? And is there a guarantee that the test results would lead to the right treatment? What if there is no good treatment protocol available?

Right now we get an ailment and start a treatment protocol. If it doesn't work, we go on to plan B, or C, or D.... all the way to plan Z. Personalized medicine is supposed to tell us skip plan A and go directly to plan L as that is right for you. But what if there is no plan L yet? Or plan L only has a 50% chance of working for you? And plans A, B and C had a 30% chance of working for you.

One test for patients with a certain type of lung cancer has now been approved for payment by one insurance company. That's a very small start. Medicare has not decided if they will pay or not.

"Medicare and private insurers have been slow to embrace genetic tests such as Foundation Medicine’s that look at a broad array of genes. (Other genetic tests, such as those that analyze specific genes known to increase a person’s risk of cancer, are more widely covered.) The payers are concerned that the tests could lead to care that won’t improve patient outcomes."
I am right there with the insurance companies (how unlike me) on this one. I want a treatment that will improve my outcome... That's the whole point of personalized medicine.

Another stupid political idea

I am fed up with all the presidential candidates already. I have no comment on many of the ideas they have raised, except for one.

Ted Cruz has decided that the FDA moves too slowly and proposes that if the FDA can't approve a drug fast enough, that Congress should step in and make the decision.

"The presidential aspirant from Texas, along with fellow Republican Senator Mike Lee of Utah, recently introduced a bill called the RESULT Act that would drastically overhaul the process for approving drugs and medical devices.

Under the proposed law, the FDA would have to approve “life-saving” products for which is there an unmet medical need if those drugs or devices have already been endorsed in “trusted, developed countries,” including European Union member states, Canada, Israel, Australia, and Japan. The agency would have only 30 days to make a decision. And Congress could override an FDA rejection with a majority vote." 

What do politicians know about safety and efficacy of medications? Nothing. And just because a drug has been approved for use overseas, doesn't mean it should automatically be approved here.

"If the bill becomes law, Americans will likely find themselves treated with medical products that were approved with varying, and quite possibly, lower standards elsewhere. In effect, his legislation stands to jeopardize — not improve — public health."
I agree with the principle here that the FDA moves slowly. But it is to our benefit that they do not rush to make decisions on drugs that could kill or cure you. We don't want decisions made fast. We want decisions made correctly, not politically or financially.

"To be sure, the FDA review process is not perfect. What is? But the agency is still considered the gold standard by which other regulators are measured. Rubberstamping an approval that was made in, say, Japan or Romania may speed access, but may not always ensure a medicine is safe or effective. Americans may want to ask themselves if they want to rely on regulators in other countries."

If the FDA moves too slowly, perhaps they should read more funding so they can have more staff and make decisions faster.

"Another problem with the bill is that the FDA would likely be hard-pressed to make decisions in 30 days. Given its workload, the agency would need more money to meet such a goal. Right now, companies pay fees to help cover review costs. Would industry pay higher fees? Would Congress appropriate more funds to cover shortfalls? Is it realistic to think an FDA review can be comprehensive that quickly?"

Think about it this way. We would then be putting our faith in drug approvals systems which are completely beyond our control. Congress would simply being agreeing with a process of which they know nothing.

"Perhaps the most troubling provision in the legislation is the notion that Congress should be permitted to override any FDA decision not to approve a product. Such a move would politicize the review process, especially as more patients and their families clamor for new treatments.

“You can just imagine the first time that Congress overrides an FDA decision and there are bodies in the street because of it,” said Robert Pollock, a former senior FDA official, who is now a senior advisor at Lachman Consultants. “It simply doesn’t make sense. Congress is not trained to do that work.”"

Okay, I'm done complaining on this, for now.

I got fired by my eye doctor

I consider myself a proactive and vocal patient. With my health I see so many doctors and spend a lot of time trying to make sure everyone is on the same page. They all need to be aware of my ailments, medications, and allergies. I have so many ailments that I often present issues to all my doctors they do not see every day. My medical care is important to me and I want a medical team which cares about me.

I have never been a huge fan of my eye doctor. I started going to them because of convenience. I have never felt they had the patient's interest in mind, they were really out for the money. At every visit I felt like I was part of a cattle call.

When you arrive, you stand in line and are greeted by one of four receptionists. They are okay not great. Never very social and treat you as just another number. Then you go sit in the big waiting room, unless you are there for contacts which has a different waiting room or for the other doctor who is on the first floor. Then you sit and wait to be called. No one talks. Every one sits there quietly. Its not fun. And you always have to wait for a good while before being called. Its just a pain in the butt.

Once they finally call you, you get your eyes quickly checked by a tech and then sit in the hall. Then another tech finally calls you again and you are seen for a few minutes. Your vision is checked and eyes are dilated if necessary. Then you go back and sit again. Finally you see an eye doctor for about five minutes.

I know they have to wait for your eyes to be dilated. But all the waits add up. I have never been out of there in less than 1.5 hours. And I never feel like I got individualized care while there.

My most recent visit was earlier this month. I was pretty peeved. I arrived on time and greeted by an uncaring receptionist. Then I went and sat down in the first waiting room for half an hour. I went to ask if they were running late as I had been waiting so long and their response was 'you are the next one to be called'. I asked if they always ran late and they just said 'you are the next one to be called'. I asked if they ever told patients when they checked in that they were running late and they said 'you are the next one to be called'.

I gave up and went back to the waiting room and said loudly something along the lines of they didn't seem to care if patients waited a long time. The woman next to me said quietly 'you always have to wait, they are double booked'. I said that's just rude.

So when I saw the first tech, I said something to her and she said she wasn't aware of any delays. Then when I saw the second tech, I asked her and she said she would speak to the office manager. Finally when I saw the doctor, I said something to him. He seemed surprised that waits were that long and said he would look into it.

As always, I review everything, especially things that annoy me. So I Yelped it and gave them 2 stars. Then I got a follow up email from them and a call from their operations person. She did ask me why I was upset and said she would look into it. She mentioned something about the eye doctor was concerned I had written an online review. I thought that was resolved.

Then yesterday I got a letter in the mail stating that I should look for a new ophthalmologist. So I updated my Yelp review and gave them 1 star.

I was ready to find a new eye doctor after my unpleasant last visit. And they are just forcing my hand in this. But I still do not think they are about their patients.

August 19, 1981 Where Were You?

We all remember the first time a doctor tells us 'you have cancer'. I have always remembered. I was in post op after surgery and the doctor told me. I had long since forgotten the date but knew it was the summer of 1981.

In the process of moving, my husband has insisted I clean out some boxes of belongings in the basement. This has been a 'discussion' throughout our marriage. He has decided they are too old to be of any use to me.

I disagreed. However finally I broke down and started sorting through them (or so he thinks). What I really have done is go through them and sorted the contents briefly and then repacked them in a new box which is now sealed up, labeled and ready to be moved to our new house.

Going through the boxes did give me a chance to do a tiny bit of sorting. One of the items I found was a receipt for TV services during a hospital stay August 19-23, 1981. (I have no idea why I kept that - maybe my husband is on to something, but I will never tell him.)

What that little piece of paper told me is when I had my thyroid cancer surgery. It was my first hospitalization which I remember fairly clearly. It was a life changing event. I had long since forgotten the date.

The hospital rooms are not that different now. They may have been painted since and the beds have probably been upgraded. The TVs have been updated - they used to be big heavy ones up high on the wall in a corner. I think they had remotes. Now they have TV/computer which can surf the web as well as watch my favorite shows. They still all are private rooms with a bathroom with shower and a sink in the main part of the room.

On the other hand, I am very different. On that date, I went from a young carefree college student to someone with cancer. My life changed greatly. You have no idea. I am still digesting it.

That tiny little piece of paper finally allowed me to put a date on the day my life changed.

Characteristics of a good doctor

I found this article online on what makes a good rheumatologist. But I really think the criteria should apply to all doctors.

The criteria are:

1. Makes Time for You - When you have an appointment they focus on you and take time to answer your questions and do not leave you hanging when they rush off to their next appointment.
2. Is On Your Team - They make you the leader of the team. They back off and let you make the decisions on what is best for you but also know when to more strongly suggest a different treatment.
3. Is Available - Works to fit you in or speak to you on the phone when you really need it.
4. Is Compassionate and Resourceful - Warmth and concern will allow you to relax and ask questions and bring up concerns.
5. Has a Sense of Humor - if they aren't relaxed enough to bring a sense of humor with them, you may never be able to get them to open up with you and you with them.
6. Don't Be Afraid To Switch - Doctors, like many other things, are like dating. If  they don't make you happy, move on.

I have learned to speak up to my doctors and make sure I make decisions instead of letting them railroad me into a decision. I also want a doctor I can get on the phone, get into see, and talk to honestly. If I can't do this with my doctors I fire them and move on.

This has taken me a long time to get to this point. You spend more than 30 years dealing with multiple doctors and conversations that always lead to 'with your medical history, we need to be sure' and you will be right there with me.

A good doctor will lead you to better care and better able to manage your ailments. So go find a good doctor who will lead you on the road to better care for you.

Becoming more daring

As your health declines do you become more daring? You hear about people coming up with their 'bucket list' and include things like parachuting, hot air ballooning, or other crazy things they never had tried before.

I apologize but I have been thinking this morning - something I should never do according to my husband. I read an article this morning by a base jumper who took a 102 year old woman on a jump. And she loved it. And she went on to riding an elephant and going on a hot air balloon ride. The risk of death in base jumping is much higher than regular jumping out of a (perfectly good) airplane.

Why do people come up with all these ideas, like base jumping, parachuting, and more, to put on their bucket list? Its one thing to see the Taj Mahal, Eiffel Tower, Grand Canyon, or some other exotic place. But its really another to try something that clearly has a high death risk, like base jumping.

Do we become more daring as we are nearer to death? Do we really have less concern for potential death and seriously injury as our health declines? Are we just trying to restore some sense of normalcy as we can no longer partake of many other activities?

'Well I can't climb a mountain anymore so I might as well jump out of an airplane.' Well, why not? No, I'm not going to jump out of an airplane even though I can't climb a mountain anymore. But should I take up other activities?

I'll have to think about this. Do I want to become more daring? Or do I accept I know my limits?

Luck and Cancer

Back at the beginning of the year I blogged about how a cancer diagnosis was supposedly just bad luck. This made me cranky because: IF IT'S CANCER IT'S NOT LUCK.

Now someone has refuted this study and says its not bad luck its environmental and lifestyle factors that cause cancers. Is this supposed to make me feel better? Did I cause my cancer by making bad lifestyle decisions and hanging out in 'bad' places? If so, please tell me where I went wrong.

I never lived in a 'bad' place. I grew up in the suburbs, played outside a lot, kept myself fairly physically fit, and ate fairly well.

I don't have a lot of the bad habits many Americans do. I don't drink soda. I don't go to fast food restaurants. I like home made food which is full of vegetables instead of eating in restaurants. Now I go to the gym three times a week because of my limitations but I went for a daily walk for more than ten years. I also would get a lot of exercise regularly between hiking, skiing, snow shoeing, and more.

I do admit to drinking alcohol, eating red meat, and enjoying dessert once in a while. I did smoke cigarettes for many years, maybe five cigarettes a day. I may have inhaled once in a while as well.

So what did I do wrong? What could I have done better so my health wasn't so bad? Now I'm really cranky. Grrr.

I hate moving, I hate moving, I hate moving

I really hate moving. When we bought our house we said we will never move again. Then we decided that no matter how much we hate moving we really did need to move. That was more than three months ago.

Half my life is packed in boxes. I can't find anything. I have too much packing to do and I physically have problems packing. Arthritis is not your friend when you need to pack and move boxes around.

One of my doctors gave me a lecture as soon as I said we were moving on not moving boxes. But if I pack a bunch of boxes do I just make a circle around me of packed boxes until my husband comes home and moves them around? Not very logical.

Part of moving that I really hate are dealing with multiple groups of people. Because our mortgage lender is a PITA, they are requiring us to use one of their selected list of attorney for the closing on the purchase of our new home. We had already arranged to use our attorney for the sale of our current home. This means I am dealing with two attorneys, plus the attorney for the buyers of our home, plus our realtors (who are very nice and keeping our sanity), and the (damn) bank.

Since we have two attorneys, I get to play 'communicator' between them. It would have been so much easier if we only had one attorney. But it makes the bank happy so they will lend us the necessary money. This is in addition to utilities and a million address changes.

We are finally getting to the countdown of moving. But between now and then are the holidays. This just complicates things even more. And I have to shift around doctor appointments so I am available for closings and all that. I really hate moving.

Please do not put a pink ribbon on anything

I am so disappointed these days. Why? Because Komen (for the cure*) has taken what could be a wonderful cause and turned it into a disaster. Back when Nancy made a promise to her sister and turned it into a cause, it was a great idea. But now, not so much.

Their website states: "In 1980, Nancy G. Brinker promised her dying sister, Susan, that she would do everything in her power to end breast cancer forever."

The idea to raise awareness of a deadly disease that was only whispered before the organization came alone is a wonderful one. They could have done so much with this. But they really missed the mark. They are not working to end breast cancer forever. They are raising awareness. So much for that promise.

As the vast majority of literate people are aware of breast cancer and the benefits of early detection, they could easily have moved on to shifted their cause to promoting research. The majority of their funds goes to education and training. But does not go to research, particularly for metastatic breast cancer research, where funds are clearly needed.

In fact if you read their website (scroll down on the front page), you can see they clearly use 20% of the funds they raise for fundraising and administration and only 80% for their mission.

To be clear I have never intentionally given money to the Komen (for the cure*) foundation. I did volunteer for them for a while. I helped at local events back when I was naive about their policies. They were very disorganized on the local level. Their volunteer coordinator did not coordinate well and everything was 'last minute'. This is a problem with many organizations so I am not saying Komen is the only one who does this. But there was no follow up with their events and we never felt appreciated.

I also used to participate in their message boards for breast cancer patients (I will not use the S-word) when I was going through treatment. They used restricted the use of their message boards and many of us felt disenchanted and left their message boards. Most of us are still happily connected on Facebook. That is a real shame as there is a lot of good information for those diagnosed with breast cancer on their website. Or there was. I'm not sure its still there as I don't bother with their website.

By ignoring the needs of the metastatic breast cancer community, they have lost many supporters. Susan Komen died of metastatic breast cancer. Women who are dying of breast cancer are calling for boycotts of the organization. See Laurie Becklunds request, "As I Lay Dying"  and Eileen over at "Woman in a Hat" as she writes about Beth's adventures at the San Antonio Breast Cancer Symposium and the idiot from the Komen board.

And I haven't even gotten into the Planned Parenthood disaster.

Komen (for the cure*) started by taking a nice woman's peach colored ribbon and turned it into a pink ribbon and has plastered it on everything they can. Now we have too many pink ribbons covering up a major gap in funding. Please stop the pink.

* As part of their ridiculousness, the Komen foundation (for the cure*) loves to sue smaller organizations who use the words For The Cure in their name. Claiming its an infringement on their copyright.

Reading about terminal cancer

This is not my favorite topic to read about and sometimes I find it very difficult to deal with. I stumbled across this article by Melinda Welsh on how she is dying in a yearish. She has terminal cancer and has been told it will be a year or so, give or take. She is still in treatment and has hopes of a longer time but knows it will be the end, in a yearish.

A yearish is how she translated what her doctors have told her. Its a vague time frame but it has a finality to it as well.

I am also reading a book, As Close As Sisters, about a woman with thyroid cancer, who had cancer cells drift into her lungs after treatment. She is nearing the end as well. I like the way it was worded 'cancer cells drifted' but not the resulting prognosis.

I have to be in the right mood to read about terminal cancer. As cancer metastases are the worst thing any cancer patient wants to hear about from their doctor. I never used to be able to read about cancer deaths. I blogged about books hitting too close to home last week.

The copy of "As Close As Sisters" I have is from the library. I took it out three weeks and two days ago and it is now overdue. It has taken me that long to open it up. I started it at the end of last week and put it down. I opened it again at the gym yesterday and read while on the bike and stepper. I get a solid hour of reading three times a week while at the gym.

I hope to get through it this week but if it gets too much for me, I will put it down for a few days.

Reading about terminal cancer makes me face the reality of what my medical history could become. It makes me face my fears on some levels. Will this make me handle a nasty diagnosis better if it ever happened to me? I don't know. But I'll give it a try.

Is this the future of cancer?

Last August, former President Carter announced he had stage IV cancer with metastases to his liver and brain. Then a short four months later, he announced he was cancer free. I was very skeptical of this news. How did he go from Stage IV to cancer free in such a short period of time? This is not what one would expect with cancer.

I don't consider myself to be scared of the word 'cancer'. I realize it has been a fatal disease which has scared humans for centuries. I don't subscribe to the stereotype that the once you are diagnosed with cancer, there is no hope for you. In fact, I don't even know how to be an adult without cancer.

But to go from stage IV to cancer free in four months? That's pretty darn amazing. And what I find most exciting is that it is not some kind of miracle.

It is part luck that President Carter's liver metastases were resectable (meaning they could be easily removed through surgery). He had surgery and they were gone. His brain metastases were easily treated with radiation. They were very small but now detectable which is how they found them before they got to be very problematic. New advancements allowed them to be detected at 2mm. (2mm is equal to 0.079" or less than 1/10th of an inch.)

He was also treated with immunotherapy and will continue to receive it. Immunotherapy is by definition: "treatment that uses your body's own immune system to help fight cancer." So this is new science. I like that. I can live with that.

Overall, I find this very exciting. Stage IV cancer used to be only a death sentence. Once cancer had spread to the brain, crossing into the Central Nervous System, there was not much that could be done. But now it seems to have been halted in its progress.

It will be interesting to see where this goes. President Carter was partly lucky and partly benefited from scientific advancements. We also have no way of knowing when and if his cancer will return. But to see such a reversal of cancer so quickly is pretty incredible. 

Advertising medications

Currently the AMA wants the US government to stop allowing manufacturers to advertise prescription medications and medical devices directly to consumers. Why? Because it makes patients ask for unnecessary medications. And those advertising campaigns aren't cheap - they cost millions - adding unnecessary amounts to the industry.

The FDA allowed this kind of advertising starting in 1997. The first ad for a prescription medication was in 1983 and was pulled after a few days.

The US and New Zealand are the only countries which allow this kind of advertising. Personally I wouldn't mind reading a magazine which was not full of pages of fine print of disclosures of side effects and watching TV without commercials with the soft voice over of potential issues.

I think its a complete waste of money for all these ads. If you see a medication advertised, you have no way of knowing if it will work for you or is really needed even if you have that condition. I just ignore those ads anyway and would be happy never to see one again.

21st Century Cures Act

This is a looming problem as the pharmaceutical industry lobbies its way through Congress. The Act would enable the pharma industry to postpone longer availability of generics, allow fewer safeguards for new drug development which will supposedly enable faster cures. But would do nothing to stop even higher prices on new drugs.

" Rather than simply charging less, the industry is pushing for watered-down safeguards it claims will lower development costs and get patented drugs to market sooner and cheaper. It will deploy 1,200 lobbyists to try to pass the 21st Century Cures Act. This bill has already passed the U.S. House of Representatives and will have its companion bill introduced in the Senate."

"This initiative is being sold as enabling new cures to treat rare and difficult-to-treat diseases by increasing funding for biomedical research at the National Institutes of Health. But, at the same time, the pharmaceutical industry will be able to use this bill to undermine FDA safety requirements by making it easier to get their drugs approved more quickly. The industry blames rising drug development costs on the FDA's drug approval process, which it says is too lengthy."

The FDA is not there to slow approvals but to keep American's safe. Using Vioxx as an example, this drug was approved and then found to cause thousands of heart attacks and deaths. 

"Investing in scientific research is, of course, a no-brainer. But the Cures Act will not only do that. Under the bill, research funding would be increased at the expense of lowering patient protections and reducing access for affordable medicines.

A key responsibility of the FDA is oversight to ensure that the risks of new drugs and medical devices don't outweigh the benefits.

Well-designed Phase III clinical trials conducted by pharmaceutical companies to get their drugs approved by the FDA are critical for weeding out unsafe and ineffective drugs. More than a third of the drugs that enter Phase III testing fail to gain FDA approval for this reason.

One of the main advocates behind the 21st Century Cures Act, The Manhattan Institute, cites drug development costs of Phase III clinical trials as a barrier to medical innovation and rising costs."

But the problem isn't with the FDA approval process. Its that 1/3 of the drugs going through Phase III trials fail because the drugs don't work. Where is the patient safety if the drug doesn't work or has too any side effects?

"...the pharmaceutical industry will make exaggerated claims and call for reforms gutting safeguards in the name of reducing drug prices. It will contest how its products save lives, extolling the virtues of their government-backed monopoly pricing power that in reality exploits our poor and sick. The 21st Century Cures Act will be included in this campaign."

I thought it was under control

Obviously its not. Last spring after coping with multiple colds that would last for two weeks and getting them every 8 weeks, we cut my methotrexate dose down. Some of the colds turned into ear infections.  With the lower MTX dose my immune system would not be as suppressed and I was less likely to have as many colds.

I haven't had a cold since last February. Until today.

Last week I was feeling crappy so I hibernated for a day and didn't feel that bad, for a few days. I also skipped my weekly MTX injection.

This week I had my weekly injection on Wednesday night. Yesterday I was getting tired and I thought I had done too much. But I woke up at 3 am, sleeping on my right side, because my left ear hurt enough to wake me up. I then rolled on my back and decided that both ears hurt. Even with all the pain meds I am on, my ears hurt.

When I got up at 8, I called my doctor's office and got a 9 am appointment. There I learned that while it looked like I had two ear infections but there was also a virus going around with similar symptoms. But with my medical history, they need to be sure. (I hate that line.) Maybe I had the virus last week which got worse.

But I did think this was under control and I wasn't going to get as many colds any more. Since I haven't had a cold since the end of February, I guess it is better. But I hate having a cold. And being on antibiotics, again. Grrr.

Support Group Please!

I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.

I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.

I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.

Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.

I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.

There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.

And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.

Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.

I'll keep trying. But I need to get through moving first.

He's walking the walk, not just talking the talk

Here's an example of someone who is really walking the walk. A former NHL (Non Hodgkin Lymphoma) patient, Robert Bazemore, is now the CEO of Epizyme which is developing a drug targetting NHL (which is not just a hockey league for some with cancer).

This is huge to me.  I greatly hope that this means the company will focus on the patients and not just on the bottom line.  The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.

As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.

But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.

I wish more people could do this and society would not shame people for medical issues.

How RA (and other ailments) change your feet

In addition to the pain and fatigue that came into my life with my degenerating disks in my back, RA, and fibromyalgia, my foot wear has taken a big hit.

I have never been a fan of high heels, well not since my 20's and 30's when I was going out dancing regularly. My favorite work shoes were low to  moderate heels for years. I had no real problems with my feet.

Since my RA diagnosis, my feet are a big part of my conversations with my rheumatologist. RA frequently affects the small joints in your hands and feet at first. I can tell you my RA did start that way. I get painful hands and feet. Also, I have to use toe separators on my right foot to stop my toes from curling under each other.

I don't shop for shoes by looks or heel height. My shoe choices are no longer low or medium heels. I get to wear flats. I get to wear supportive flats with a big toe box - meaning no points. I get to put expensive inserts ($50/pair) in my shoes that aren't supportive enough. And my feet are now wider and 1/2 size longer.

Shoe brands that I now look for are Merrell's and Clark's. Naturalizer shoes, a good brand of shoes with structure, no longer are an acceptable choice. While they are supportive they do not provide enough support.

I got rid of most of the shoes in my closet as a result of these changes. Yesterday I found I wasn't alone with this. Lisa wrote about this in her blog as well. (I met Lisa a few years before my RA diagnosis and have been reading her blog for a while now.)

Back to my feet. Foot pain sucks. Because your feet are involved in things like walking and standing. Its hard to do much without using your feet. And sometimes they hurt when I am sitting or lying down.

You never think about some body parts until they stop cooperating with the rest of you. I don't miss my gall bladder much now that I no longer have it. My gall stones made things difficult for a while. I also don't miss my left ovary and uterus since they have been gone for more than ten years.

But my hands and feet are a real problem. They are too important to remove. I am stuck with them as they are and hope they don't get too much worse. And wear ugly supportive shoes.

Perceptions of cancer

After living with cancer for so long, I think I have a slightly different perception of cancer than many others.

On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of  'if you have your health, you  have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.

My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.

When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.

I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.

I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?

So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and  consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.

It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.

And we need to remember that.

Big hospitals forget who is important - the patient

A while back I read an article about how surgeons at Mass General were double booked for surgery and the hospital policy was okay with this. Double booking is when the surgeon is responsible for two surgeries going on at the same time. A follow up was published yesterday to show the results of this expose and whistle blowing by Dr. Dennis Burke.

"Burke was at the center of the Globe Spotlight Team’s report in October about the propriety and safety of a fairly common practice called concurrent surgery, or double-booking, in which doctors work on more than one patient at a time."
And as long as the doctor is within 1/4 mile of the hospital during both surgeries this is okay. And that's the new policy instituted by MGH as a result of the story. Really? I don't consider this that okay at all. I would not want the patient where the surgeon wasn't even in the room. I assume the surgeon is responsible for the surgery should be in the room at all time.

Burke is uncompromising on the issue. He called it unsafe and unethical, embracing a cautious approach that I think most of us expect from the doctor wielding the scalpel.The hospital's response to this article was appalling. They fired the man who spoke up about this issue. He was a physician at the hospital and ended up moving on to a new hospital, and all his patients followed him.

The hospital disagreed. MGH said it has taken careful steps to assure patient safety. The hospital accused Burke of violating hospital rules and perhaps federal privacy laws by supplying the Globe with copies of some internal records.
Being a whistle blower is a hard thing to do. And by being fired by the hospital, he has become a hero to others. 

"Burke thinks MGH and its advisers blundered by terminating him. “Probably the stupidest thing they did was to fire me,’’ he said. “If they didn’t, this wouldn’t be such a big story.’’

But it is. And that may explain why nearly 300 people turned out at the Fairmont Copley Plaza on Friday afternoon during a risk management seminar sponsored by Harvard Medical School to hear Burke’s version of events and why he believes concurrent surgery is unacceptable.

When he was done, the audience stood as one amid resounding applause." 

Who do you want for your surgeon? One that is up to 1/4 mile away while you are in the OR or the one who said this was wrong? The patient is the most important person here and their safety should be utmost.

Comparing notes

Yesterday I had lunch with a high school friend who has MS. She is the one person I know who can relate to many of my health issues. While she hasn't had cancer, she has had chemotherapy - it is used for MS as well as other ailments besides cancer. Its safe to say we can compare a lot of notes.

As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.

We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.

I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.

Some books still hit too close to home

I have always been a bookworm (hiding under the blankets with a flashlight as a child). I read lots of different types of books. After my first cancer diagnosis I found I would have problems with books on young women with life changing medical issues. I would stop reading them, get upset, and put them down. Some I never finished reading.

I have thought I have had this under control from time to time through the years but then again my angst rears its lowly head. I got a pile of books out of the library last week and was looking forward to reading them. I got through one and put it down to move on to the next.

Red alert! I didn't catch the full plot when I read through the blurb in the library. A woman has to figure out how to tell her best friends that she is dying of breast cancer.

I resisted the urge to immaturely throw it across the room and put it down. It sounded like a great book except for that tiny little detail on an impending death from cancer.

I have pet peeves about book reading. For some reason I don't really like books written in the first person but sometimes I will read one. I'm not sure why the first person bugs me but it does.

I don't mind books with highs and lows, emotional tension, or twisting plots. I sometimes wonder what is the real difference between a romance novel and a military novel. Sometimes I think that its just the amounts of lovey dovey mixed in with car chases, shoot outs, or high drama and a few dead bodies.

But its the causes of death which get me. Bullets, poison, large animals don't bother me. But cancer gets me every time.
 
It would be nice if it would someday I could get a handle on that.

Please, patients not profits

I know I can sound like a broken record sometimes (a very badly scratched record) but this stuff just really irks me. A new report came out recently that said Gilead, manufacturers of that ultra expensive Hepatitis C drug,

"The 18-month Senate committee investigation reviewed more than 20,000 pages of company documents.

Of course it takes a Senate committee...

'The documents show it was always Gilead’s plan to max out revenue, and that accessibility and affordability were pretty much an afterthought,' said Senator Ron Wyden, Democrat from Oregon, who co-led the investigation with Senator Charles Grassley, an Iowa Republican, in a press conference.

Its all about the revenue. Their pricing strategy also caused patients in several areas of the country to be limited in their access to the potentially life saving medication because of the cost alone.

In a statement released Tuesday, Gilead disagreed with the conclusions of the report, saying that the price was ‘‘in line with previous standards of care.’’ The company noted that it has programs in place to help uninsured patients and those who need financial assistance to access the treatments. More than 600,000 patients around the world had been treated with Gilead’s hepatitis C drugs since 2013, according to the company." 

Of course they were not happy about criticism. And yes they have programs to help uninsured patients and ones in financial need. But maybe they wouldn't need such expansive programs if they hadn't priced it so high in the first place.

"The report suggests that the factors Gilead used to set its price were not based on the research and development needed to bring the drug to market, or on the $11.2 billion it paid for Pharmasset, the company that developed Sovaldi. Instead, Gilead executives looked at what previous treatments had cost and the effect of future waves of competition on the revenue it could bring in.

Instead of using their industry's standard line of the R&D to bring it to market, they decided to get as much money as they could and then set themselves up for future high priced medications.

‘‘Company officials surmised that its drug had a ‘value premium’ because of increased efficacy and tolerability, shorter treatment duration, and its potential to ultimately be part of an all-oral regimen,’’ the report states.

In its statement Tuesday the company said, ‘‘We stand behind the pricing of our therapies because of the benefit they bring to patients and the significant value they represent to payers, providers, and our entire health care system by reducing the long-term costs associated with managing chronic [hepatitis C virus].’’"
Admit nothing, deny everything. And screw the patients.

Can I be a person not a patient?

I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.

My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.

I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.

Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.