Ethical dilemma on a cancer drug

I have been mulling this over for a few days. A woman in Texas, Andrea, with stage IV ovarian cancer wants BioMarin to allow her to receive a new drug BMN 673 which has not yet been approved for treatment. Her doctor thinks it  might help her. She hopes it will help her. She understands that it may not help her but it has helped others. There is a big debate going on.

I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.

This is a real ethical dilemma and I hope for the best.

What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.

I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.

Bracing for pinkness

Today is September 30. Back at the beginning of September, I asked all of you to take a pledge against pinkification and focus on real needs. Here is the pledge again:

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

Its been a month. Have you researched other causes? Have you rejected any pinkification efforts already?

I have been asked to be in a newspaper article (which they actually print on pink paper during the month of October) and declined. I have already been approached for donations because its breast cancer awareness season. October will be a blur of pink, with the internet and phones and mail full of requests to help with pinkification efforts. The media will also be full of rehashed breast cancer research from the past few years. This does nothing. It does not help.

We do not need awareness. We need research. And a cure would be really nice. I just learned this morning that another 36 year old woman, Jen Smith of LivingLegendary.org, died of metastatic breast cancer yesterday - that was too young.

We can skip the awareness. There are better things in October - Columbus Day/Canadian Thanksgiving and Halloween. (Haven't you seen the little candy bars everywhere?). Its also Liver Cancer awareness - which is a green ribbon. You can skip wearing pink for breast cancer awareness and wear green for liver cancer.

November brings us Lung Cancer awareness and the Great American Smoke Out as well as Pancreatic Cancer and Stomach Cancer months. It also has Veterans Day - and we have many veterans to thank and remember - as well as Thanksgiving.

So please take the pledge and donate to cancer research and not pinkification. Thank you.

We are what we eat

We really are what we eat. Here is a (hypnotizing) gif of how American eating habits have changed since 1970.

I find this hypnotizing and fascinating. I know my eating habits have changed in the last dozen years. I probably eat more vegetables and fruit than I used to and know I eat more yogurt. In the big picture, Americans eat a lot more  yogurt and oils than they did in the past. We skip the shortening. But we still have bad eating habits. You can read more here.

This is a lame blog post today because I am back from my trip and all distracted with too many things to do and a neglected (in his mind) cat.

I'm tired

We have been on vacation - an old friend (not old in the sense of aged, but in the sense I have known her more than 30 years). Now that we have vacationed, I am tired.

We haven't stayed up late drinking. In fact last night was the only night we have had anything alcoholic to drink. We really haven't stayed up late either. But we have had some (mis)adventures.

Day one: My friend left her purse and bag in a store. When she went back to get her purse, the cashier was chasing her out the store again about the bag she left behind.

Day two: We went into downtown Burlington VT and did some shopping. When we stopped for lunch I realized I lost the parking garage ticket. I had to plead my space shot story to the guy working in the garage. Then when we got back to the hotel, I realized I lost my hotel room key card as well.

Day three: After getting a new key card at the hotel, we went to Middlebury for the day. We did get several sets of directions and didn't ever find the last store we wanted. But I don't think we left anything behind....

Day four: We went to the Shelburne Museum and had a wonderful time (I highly recommend it if you are anywhere near Burlington VT). As we left the museum, I said 'we had a good day, we didn't lose anything'. My friend told me later she considered saying 'the day isn't over yet'.

My husband called me when we were back at the hotel after the museum was closed and we had the following conversation:

Him: What did you do today?
Me: We went ot the Shelburne Museum.
Did you buy anything there?
No, we decided not to.
What did you see there?
Some great exhibits on quilting, weaving, circus trains and more.
Can you tell me why your debit card is there?
No it isn't. I have it here.
Write down this phone number - its the number of the local TD bank.You left you card in the gift shop.
No I didn't I have it here. Wait, that's the other debit card. Damn.

Then my friend got on the home with my husband so they could talk about me. Apparently I looked tired and she thought we should have left half an hour before we did.  I'm sneaky, I was actually exhausted about two hours after we arrived and we spent six hours there.... I slept really well last night.

I decided I wanted to turn the tv on so we could catch up on the news. I couldn't find the remote ANYWHERE. I went so far as to check the bags I had packed to make sure I hadn't put it in any by mistake. My friend then felt sorry for me and started to help. It was in the little stand right next to me on the bed side table the whole time.

Last evening I said to my friend 'we haven't gotten lost yet' and she reminded me that we aren't home yet. Crap.

Its not the patient's fault

It is never the patient's fault [unless their ailment was preceded by vast quantities of alcohol and the slurred statement of 'watch this!']. So why do people persist in being so insensitive to sick people? And then there are the people who know what you need to get better even though they never went to medical school. Or their religion will solve your problems.

"You have lung cancer, how many years did you smoke?"
"You have breast cancer, didn't you get your annual mammograms?"
"You just need to exercise and eat better and I'm sure the first 100 pounds will easily come off."
"You didn't pray enough so of course you got cancer." 


Whatever, if you have the ailment you find this all rude, insensitive, and sometimes worthy of a public bashing (e.g. Facebook slam).


But do you expect to run into it from practitioners of alternative treatments as well? I have from my accupuncturist. But at the same time she didn't understand the ramifications of my ailments. She would also ask when my lymphedema was going to resolve itself.

One person in this article is asked by their reflexologist after prostate cancer surgery - what did you do to bring this tumor on? And you hear the stories about someone passed away from cancer - and it is implied that they did not fight hard enough.

Sick people are people too. They may be going through a bad time in their life but they are still are people with feelings and sensitivity - and may be extra sensitive because they aren't feeling well.

Its not their fault.

My story is that I have chemo brain, fibro fog and something else I don't remember....

Now I might be able to also claim Tamoxifen fog. I was on tamoxifen for two years so now I have something else. But I think there is still something else. I just can't remember.

Going without health insurance

One of the biggest arguments with the Affordable Care Act or Obamacare is that some people do not like to do what they are told. I fully support the freedom of choice and if people choose to go with out insurance and pay the annual fine because they want to, why not?

The main goal of the ACA is to make health insurance affordable and accessible for more Americans. I think it will do that. People have not gotten insurance because they were told they had pre-existing conditions, low income, or whatever reason. Now there are options for all.

A recent story listed some people and why they did not want to have health insurance. That is clearly their choice and as the penalties rise in the coming years more of them may change their minds. Also, as people age they have a tendency to develop ailments which need expensive treatments.

I think in the future, there will be care for families with small children and they will grow up with health insurance and expect to continue you having it. I do think there will always be those who choose not to. That is their choice.

Me I will always have health insurance.

Things with a cure

The CDC recently warned of these new germs that are resistant to treatment - the superbugs as they are called. They are out there and killing more and more of us as they resist most treatments. While the pictures of them are pretty cool, the germs themselves are not.

There are other ailments with out a cure. I have a few:

Fibromyalgia
Rheumatoid
Degenerating disks

There are lots of others that I don't have for which I am grateful.

They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.

Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.

But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.

I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.

I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....

Changes

I am going on vacation again (and a note to burglars - my husband is not and will stay home and be protected by the cat while I am gone). This time I am going with a friend who I have often vacationed with over the years and have known for more than 30 years (now I feel old). We have gone on various adventures in the Northeast and Midwest over the years. These have included a trip to Duluth (with a Deliverance moment), a trip to Bayfield, WI and to see the headwaters of the Mississippi in Itaska, MN.

Just last year we went (with our men - they are not always allowed) to Boothbay Harbor, ME and took a day trip to Monhegan Island where my husband and I hiked all over.

This week we are heading to Burlington VT to look for soap makers, cheese  makers, yarn, glass blowers, potters and weavers and will stop at Basketville and Webs on the way home.

In the past we have been relatively energetic and able to do things like go for a walk and go shopping without a break in between. The difference is that this year I do not have the energy and strength I had last year to do much. This will be a change. I will not be up to not nearly as much activity.

I have realized my body has changed significantly in the past year. I am not able to do what I used to. I have to take a lot more breaks and rest a lot more. I went from feeling like a 30 something most of the time to feeling like a 70 something way too often.

I know its part of getting older by  my aging went way too fast.

But I'm not that sick (or I didn't think so)

Yesterday I had lunch with a friend. She is someone who has had breast cancer twice, two mastectomies and every complication on the planet. We talked about all sorts of things, including our health. We had a 'healthy' meal of Chinese food. Not to say that Chinese food in general is bad for you but we ate the unhealthy things like fried egg rolls. And we gabbed about all sorts of t hings.

At the end of lunch we parted with the intent to get together for lunch in a month or so again. She said to me 'take care of yourself' in a way that made me realize, she really meant it. I guess she thinks my health is really that bad.

I don't think of myself as that unhealthy but I guess I am. I have to schedule my life in such a way that I allow down time to basically crash for a few hours.

I do have some health concerns plus a few worries on the horizon. But I go to the doctors - many of them - in the first week of October where these will start to be addressed. I am not discussing any of them until my doctors and I get to discuss them and decide on next steps. (Its my blog and I get to decide when I will discuss them.)

But I'm really not that sick (or I didn't think so). I'm not about to drop dead at any time soon. But I will say its hard to develop healthy behaviors when your health is regularly going in the wrong direction.

That sucks vs. I'm sorry

One thing that drives me crazy is when I say something about my health and I get the reply of "I'm sorry". I always think, WTH are you sorry about? I don't want your pity. Its my life and I'm living it as best I can.

Yesterday I went to the gym which I love and is full of dilapidated people like me, and worse. There are people that come in with oxygen tanks, one leg, club foot, orthotics, lymphedema sleeves, you name it and its a fashion statement there. Everyone is there with the goal of getting healthier. That is everyone but me. 

I am there to prevent losing more health - the basic things like flexibility, balance, and strength. A year ago I could do a lot more than I can now due to my RA and fibromyalgia. If I try to work harder, I end up regretting it for a few days after. I maintain my workout, going every other day, and slowly inch up increases. Then, inevitably something happens, flare, get sick, vacation, and I get set back and slowly start working my way up again.

The gym also runs different programs and 'contests' a few times a year. Things like a team weight loss challenge where the team losing the largest percentage of weight wins bragging rights. They get to sell extra training as a money maker for them. Anyway, I got to the gym yesterday and the young woman working the desk asked if I was I was interested in joining their 8 week fall fitness program. You get an assessment on your abilities to do whatever - planks, crunches, reps, etc - and then work with a trainer weekly for six weeks and get another assessment. At the end the team with the biggest increase wins bragging rights.

I was asked if I would like to join. I said that due to my RA and fibro I am not looking at increasing my work out but maintaining what I do without set backs. Her response was "well that sucks". My response was "Exactly!"

I was very happy not to hear another lame "I'm sorry". That made me feel better.

In the parking lot in the gym there is a shrubbery with a hole in the side. Now apparently it has two cute, furry residents.

Things cancer has taught me

I found an article written about what she learned from her mother's cancer. I can tell you its also things I have learned:

1. Doctors do not have all the answers but that can be okay. I think we are taught that doctors know everything and will have the answer for every ache and pain. But with cancer we quickly learn they do not. But that can be okay. We can educate ourselves and remain satisfied with our care. Also we cannot expect the doctors to make the big decisions for us. They suggest courses of treatment but we can make our own decisions as to which ones to choose.
   I have learned not to follow blindly the medical guidance but to question and discuss decisions in ways I had never thought I would.
2. Sometimes patients don't want to talk about their cancer or other ailment. We are people. We do not live on the live reality station called "Cancer 24/7". We go to the grocery store, we shop on line, we go out to dinner, we have friends, we do laundry. Its sort of like the pages in People magazine where real stars are caught doing normal things - like playing in the park with their children or pumping gas.
   Cancer people are people too. So stop asking us how we "really" feel (with that knowing wink) every time you see us. Its annoying after a while.
3. There are many people can't deal with a cancer diagnosis. Those friends that brought you home made chicken noodle soup when you had the flu? Forget them, you may never see them again. The friends who stick by you are your real friends. You need to learn to make new friends who aren't scared of your diagnosis.
4. People are changed by their cancer diagnosis. There is some mystery about this new normal they are supposed to achieve (that doesn't really exist) but a cancer diagnosis is basically a life changing event. Cancer people have no control over this but they really do learn about what is more important in life and how physical limitations can change them.
5. Caregivers are also affected by the cancer diagnosis. They do not realize about the bonds they have to the patient and how the other person changes will affect them as well.

I have learned more but this is a start. A cancer diagnosis should come with an instruction booklet so we can find out what we are experiencing is normal.

I overslept or life with fibro and RA

What an exciting blog post you say? She over slept. She is boring. Well I never claimed to live an exciting life. I really don't. I am boring in general - except for the medical stuff. My life is a veritable snooze button.

Yesterday I was exhausted. I mean I worked longer than I normally do and felt exhausted. I drove myself to the gym and actually worked out - through some miracle. I came home and put on my pjs and got in bed at 5pm. I did get up and eat some left overs around 7, watched Jeopardy and was back in bed at 8. Then we  overslept.

I did not hear the alarm go off repeatedly. My husband is in charge of the snooze alarm. We only over slept by about 30 minutes but that has a (what's the word I want - one little issue turns into giant ones?) effect. No homemade lunches today. My husband got a pear for breakfast. I will have a banana and yogurt which I will eat either in the car (the banana) or when I get to work (yogurt) - it is not possible to eat yogurt and drive.

I was looking for an excuse to get take out for lunch today anyway and now I have it.

One of the advantages of my current job is that I can make my own schedule so I won't technically be late. The biggest problem in my commute is school buses,  Once I motivate I can get out of here fairly quickly.

Because of fibromyalgia and RA I need a lot of naps. I did too much for the past few days and ran out of nap time. Even if I don't nap, I need time to lie down and do nothing to recover from grocery shopping or something.

The fatigue levels I hit are pretty amazing. Sort of like being back in chemo again where napping and sitting around in a daze were considered quality life. But the Fibro/RA lifestyle does not allow the fatigue to go away, ever.

I am still lying in bed - but I have read my email, caught up on FB, and am now blogging so I am productive - drinking coffee. Shortly I will hop in the shower, go to work, then the farmers market, and then get my nails done. That will require a brief nap before going out to dinner to celebrate.

Today is my birthday (I'm 37 if you must know, but I was 37 last year and the year before and the year before...) and we are going to celebrate. Out to dinner tonight so I have to be able to stay up until 8 pm.

I used to think when I hit 40 I would start opening up about my cancer, but I didn't. Procrastination at its finest. Why do something now when you can put it off for 20 years? Then I said when I hit 50 I would. But life interfered and I got breast cancer and started opening up much earlier.

Now I think everyone in the world knows how unhealthy I am and I appreciate birthdays more. But I don't believe changing the number is important each year - its just one more thing to remember in life - so I used to be 29 and then I eventually moved on to 37. At some point I'll pick another age an stick with that one.

But in the meantime, I will enjoy my life with fibro fog, RA pains, chemobrain, and celebrate the day, now that I finally woke up.

A peek at life with cancer

It took a new study to confirm what all of us living with cancer know - its still scary years and decades later. The study said that for the first few years after a cancer diagnosis patients cope with depression but then it turns to a much longer bout with anxiety. Why you ask? Because there is no guarantee it won't come back.


This study also looked at anxiety in both patients and their caregivers. The caregivers also tend to cope with anxiety.

If you have some sort of other chronic illness such as rheumatoid arthritis or fibromyalgia or many others, patients tend to deal with it as a chronic illness. Cancer patients also deal with it as a chronic illness but its also a chronic threat because there is no way to control or prevent it from coming back or showing up with a new cancer some place else.

How pleasant.

It took this fancy research study to tell me something I know well, 32 years later, that it still looms over me. In 2005, 24 years after my first diagnosis, I had millions of uterine fibroids that resulted in a hysterectomy. I expressed my concerns to the surgeon that I had had cancer before and was concerned about more cancer. Her reply 'fibroids usually are benign but to be sure we slice and dice them to make sure' left me feeling better about it. But I had been concerned enough to ask.

In 2007 with my breast cancer diagnosis, I started the roller coaster again. But full of little tips and reminders, that because it was my second cancer at such a young age (never say that to patients please), I got extra tests and exams as a special perk.

Years of going to doctors who say things like 'with your medical history, we need to be sure', while reassuring it does reinforce the possibility of cancer looming.

So now I shouldn't worry about depression but only the anxiety and wait for a guarantee. 

Medication management

There is all kinds of advice out there on how to safeguard and manage prescriptions. One article I read recently even advised keeping them in a safe. I thought that was a bit of overkill but I am careful.

I have several issues with my medications. One of them is toxicity to others. My cat can't recognize a chipmunk under his nose these days but there is a family joke about the vioxx incident* that he survivied. I wouldn't put it past him to try to ingest something he finds on the floor. I am currently on methotrexate which is actually a chemotherapy drug which comes in little sealed bottles and has all sorts of warnings.

I make jokes about knowing when you are on the good drugs as they have street value. A drug addict would be very happy with the contents of my little stash. When we are going away, I hide it away a bit more than usual. I realize that if someone broke in my medicaitons would be a target - that is why they are not sitting out. Added to the fact that they would completely cover my bedside table, I needed a larger storage area for them.

I am also aware of the addictive potential of several of my medications. I am careful to think about when I take my medications, how often, and how much. I know two tramadols make me very stupid so I avoid that. I make sure I take my daily pills and use one those pill boxes with a daily box to make sure I don't forget or even take them twice (which would be a huge mistake).

Finally, every week when I fill our pill boxes I make sure everything gets filled and we don't run out. The mail order prescriptions are a pain when you run out because I need the emergency short term fill at the local pharmacy while waiting for the replacement to arrive by mail. Never mind the times I have to wait for the damn insurance companies to authorize refilling them.

I think I am just trying to be an adult here - a useful thing to do from time to time.

Recurrence prediction 10 years out

The Oncotype DX test came around a while back which could help predict whether women were  likely to have recurrence of their breast cancer. This score is also used to suggest different treatment options.

Now there is another option using the ICH4 gene which helps predict recurrence during the first ten years after diagnosis. Most breast cancers recur during the first three to five years so having a test which can extend well past that time frame is a wonderful option.

I will need to have a conversation with my oncologist about this when I next see her.  I am sure I will get the same answer I always get - my criteria don't meet the requirements for the test. Often its because I had another cancer prior. Or because it has been so long since my diagnosis.


Crap, they don't know, I don't know either. I'm still here and that's what is important.

This lovely little video gives about 20 seconds on this test after you learn about exercise and migraines first.

I believe my cynical side is showing today. I'm going to the gym.

I try to be flexible

In July I went to see my new rheumatologist.  We talked about all sorts of things related to my rheumatoid and fibromyalgia. Among other things, she wanted to see how my flexibility is doing. She said my knees are 'snap, crackle, and pop' which did not surprise me at all.

However she was impressed with the flexibility I have retained in my shoulders and hips.  I said it was due to the gym that I go to where they work with the members and their ailments. My back pain doctor is also impressed with my flexibility.

Yesterday I was at the gym doing all sorts of complex things like balancing on the flat side of the BOSU and pumping iron at the same time - with my giant one pound weights - and 30 second planks. I am a stellar athlete. I can even balance on one foot and sit down on a bench and stand up again unaided. These are complicated tasks.

It has been just about a year since I was told I had fibro and a few weeks later I learned about RA. In that past year, I have had to significantly alter my workout program because there are many things I can't do any more. Mostly I can't get through the same workout I could a year ago.

First we cut it way back, then we started stretching things out - more reps and lower weights, etc. Now I think its time to start trying to build more things back in.

The thought did occur to me as I pumped iron yesterday that it is a very good thing I have been going to this gym for as long as I have. It means I was in relatively good shape (for me) when diagnosed and I have been able to maintain the basics of balance, strength and flexibility which are some of the biggest problems for RA and fibro people.

I really want to retain some flexibility in my body as well as balance. All I can say is I am trying.

But you don't look sick

One of the first complaints I heard from other cancer people was that how could they have such a bad thing when they didn't look sick? To this day, I may feel like crap but I don't really look sick.

If you have cancer, you usually don't look sick unless you are in the middle of chemo that gives you that lovely pallor and hair loss. Some chemos don't even give you that look these days. I met a woman a couple of years ago with stage IV lung cancer who looked great and was on an oral chemo. She said she took a daily pill and felt pretty good as well.

We are wired to look for visible ailments in people. Do you ever look at someone getting out of a car with a handicapped placard who looks fine and wonder what is really wrong with them? Maybe its a respiratory ailment or heart condition, but we are suspicious. We expect to see someone with a few medical 'accoutrements' (how's that for sneaking in a big word so early in the day?) such as a cane, walker, etc.

If we hear someone has cancer, we expect to see a pale face with a few straggles of hair peeking out from under a hat or scarf, who is rail thin. But that is less common than the past. If you hang out in the waiting room at the oncology department, you see more people like that but certainly not everyone.


Most people don't realize how many ailments I have. When I had my double ear infection this summer, I was informed I looked pale. When I wear my wrist split for tennis elbow/arthritis, people regularly ask me what's wrong - even total strangers. Maybe I need a full body cast for people to get the point.

Too many of us aging

We are getting older so will there be enough doctors to care for us?  Especially for cancer care?

And will we understand our options?

Us baby boomers need to stop aging to doctors can catch up with us. We are reaching the, and I quote, 'tumor prone years' as a generation. (I hope I have already had my share of tumors, thank you.)

In addition, oncology is a quickly evolving medicine these days - personalized medicine being on the forefront - as scientists are racing to find a cure for cancer. The doctors have lots to keep up on.

Patients do too. They need to stay informed on their options and understand what treatments are curative (good word) vs. which are palliative (bad word). We need new ways to help patients understand their options.

Finally treatments are getting more complex and not necessarily very helpful. "Of 13 cancer treatments approved by the FDA last year, only one was proven to extend survival by more than a median of six months, the report said. The drugs all cost more than $5,900 for each month of treatment."

Ouch! (That's over $70,000 per year... but wait no one is living long enough to take it for a year.)

Finally, here is a list of recommended questions for patients facing a cancer diagnosis:

• How long does the average person with this cancer live?
• What is my likelihood of a cure?
• If I cannot be cured, will I live longer with treatment? How much longer?
• Will this care directly treat the cancer?
• What are the side effects?
• Am I eligible for trials?

If your health team does not have answers, “you need to find another set of providers,” Ganz said.

So if we all could just stop aging, and let the medical world catch up, we might be better off. I am still 37 so I am doing my part.

And it won't cure you

I wonder how doctors are communicating to patients about the benefits of late stage chemotherapy. A study (because we need more studies) last year showed that 69% of late stage lung cancer patients and 81% of late stage colorectal cancer patients did not understand that their treatment was not likely to cure them. Obviously there is some kind of communication gap here.

The question is are the doctors communicating but the patients aren't hearing it or are the doctors not communicating? I am not too sure.

I think the patients want to hear the good news and may not really hear what the doctors are telling them - that it will only gain them a few more weeks or months of life at best. Would you really want to hear that? Probably not.

Also, the doctors have a fine line to walk. When one treatment stops working or its time to restart treatment due to disease progression, what do they say to the patient? This treatment option at best will last six months and then if your disease stabilizes, you can expect another six months after that? Or do you omit that part?

What do patients want to hear? I have a friend who told her doctors no numbers and didn't know her cancer staging for about three years after diagnosis - even through surgery and chemo. It took her a long time to want to hear.

Another friend is restarting chemo this week. She finished chemo for the third time last November. Her latest PET scan shows progression so her doctor is putting her back in treatment for six months. After three months she will have another PET scan to see if the chemo is working. And then what? If the treatment works she will just wait and have another scan every three months. If it doesn't work, the unsaid will happen. I think she is finally realizing that chemo only buys her more time. But I'm not sure she would admit it.

But if it was you, would you want to know that your treatment will only extend your life for a few more weeks? That it won't cure you? I think I would want to know the numbers and understand that it wouldn't cure me.

First mammogram at what age?

This will open up a new debate I am sure. A new study is due out today from Harvard showing that younger women should get mammograms. The thought process being start the screening younger to build better habits.

"This new Harvard Medical study looked at more than 7,300 women diagnosed with breast cancer. Just over 600 died. Among those who died, 65 percent had never had a mammogram.

Researchers concluded earlier screening could have saved lives."

An additional note is that half of the women who died were under the age 50 as well.

In 2009, research suggested that women should not get mammograms until age 50. That caused a big hoo-hah if you recall. Now they are suggesting that younger women, no age range suggested, get mammograms, so brace yourself for another huge debate.

The news just covered this story as well. The upside to starting mammograms at a younger age is deaths can be prevented. But how many women would need to be screened to save a single life? And how many false positives would be detected causing unnecessary stress and additional medical costs in the meantime?

I also question the increased cost burden on the medical insurance system. We complain about medical costs increasing but then we expect more and more screening tests. It is a careful balance to achieve - who should get screenings should probably depend on a patient's medical history.

Personally, I have had annual mammograms since age 24 because I had a benign tumor, and a cancer history, so when my breast cancer was detected at 45, it was not my first mammogram. But if not for that benign tumor, I would probably not have had a mammogram until at least 40.

Every patient is different so the advice should be discuss this with your doctor for now.

There can be humor in cancer

Cancer isn't supposed to be funny. But to patients it can be. People in cancer treatment are still people. They keep their sense of humor. Here's some proof.

A 12 year old boy from Milton, MA self published a joke book while in chemotherapy. He got other children in the pediatric cancer center to leave jokes for him each day. He compiled them and published a book. You can buy a copy online here.

All proceeds from the book sale go to pediatric cancer research. For $8.95 you can get a few snickers and laughs and help a worthy cause. If you don't like jokes for kids, buy a copy and donate it to your local hospital.

Life with the damn cat

Today he is the damn cat. Last night he woke me up throwing up next to the bed. This morning he was annoying enough to get me out of bed - I thought he wanted breakfast. No, he wanted to go outside and eat grass so he wouldn't throw up inside. I didn't understand. He threw up inside. Then I let him out and he ate grass.

He is an indoor cat and he has a plant pot that is growing grass for him on the window sill. But grass is better on the outside. However he can be very determined.

He is also approaching the ripe old age of 19. He can't hear - we can tell because he is no longer capable of walking quietly. Nor can he tell how loudly he meows at us. He can't see. We can tell this because I can wave my arms at him across the room and he can't find me. He can't really smell. We can tell this because he can't find food unless it is right under his nose.

He also has swollen ankles on his back legs where it looks like some kind of arthritis but it doesn't seem to bother him much. His coordination is bad - we can watch him slide off the edge of the coffee table, miss the edge of the sofa when he tries to get up on it, and all sorts of other things that impair his dignity.

He was REALLY mad at us when we left him on vacation. He had a live in baby sitter who fed him and took care of him. He stopped eating for a few days and left a few presents around the house.

But he is very cuddly. Its now fall. I can tell because he sleeps next to me  and I appreciate it now. When it was hot out, I didn't appreciate it as much.

He was also my chemo buddy and whenever I am not feeling well, he follows me around to take care of me with his snuggles.

That is life with the damn cat. It definitely has its ups and downs.

About that risk assessment

There is all this talk these days about what you can do to reduce your risk of cancer, dementia, chicken pox, or the common cold, among a million other things. You know all the advice - eat broccoli, exercise, don't drink, lose weight, exercise, eat margarine no eat butter, drink red wine no white - and all it does is confuse the crap out of us.

Then they start to give people personal risk assessment for an ailment and expect us to believe them. How much conflicting medical advice do you hear on a given day? A lot. Eat red meat and chocolate, no don't, yes, well a little, and the famous words - in moderation. How can you be expected to believe anything?

When you are told what your risk of some thing is - whether being diagnosed with cancer or being hit by lightening, don't you always harbor that little thought in the corner of  your brain that of course they are only talking about other people and not you or anyone you care about. Its always going to affect those other faceless people you don't know.

So why all the surprise when a new study shows that one in five women don't believe their breast cancer risk? I can honestly tell you I was very surprised by both my cancer diagnoses. I thought my back pain was the result of muscle strain and not the permanent debilitating state of the disks in my spine. I thought my aches and pains that turned out to be rheumatoid and fibromyalgia were just normal aging.

Sometimes I think, they were all wrong and I am really a healthy person who can live the way I used to - working full time, having a social life, and going off on adventures regularly that involve beaches, mountains, and the great outdoors.

Seriously, we hear so much conflicting medical advice and then if someone gives us a risk assessment, we are supposed to believe them? I think a risk assessment is like listening to the weather forecast - there is a good chance Saturday will be rainy and it should clear out for Sunday but watch out for a hurricane next week. How do they really know?

Not a profound thought in my head

Some days I actually write a profound blog post that is coherent and other people read and share. Today is not one of those days. My brain is full and I haven't even left for work yet and here is why:

Weather: Tonight's low is going to be down around 50 - this means I need to start bringing in some plants from outside - particularly my Ponderosa lemon and my Key lime plant. They are just starting to produce fruit and I want to be able to enjoy them. But they are tropical plants and aren't supposed to be out in temperatures anywhere in the 50s. There are even some frost/freeze warnings near by.

Its New England and the summer was unplugged last weekend - it was Labor Day. Time to think about snow shoveling, raking leaves, and (brace yourself) winter. Never mind that summer doesn't really start around here until mid-June.

Flabbiness: While I didn't gain or lose weight on vacation, I came back with a vow to stop snacking at work (where there are always snacks). That lasted about two hours. I have to reinforce my will power or I will never lose weight.

Birthdays: What the hell to buy for my husband for his birthday next week? I have some ideas but he is difficult to buy for to say the least. And what to do to celebrate his birthday. Damn. I'll have to figure this one out.

Work: I'm buried. I was out for two weeks and my in box filled up as my brain emptied out while I was away. And I am getting no sympathy because I am taking another week off at the end of the month.

Crafting: My knitting is burying the house. I need to start finding places to sell it all. But first I need to finish projects, block them, and label them all. Crap.

And I have four more weeks until another doctor appointment.... (insert tiny cheer here)

See nothing profound here today. I'll try to be more profound by tomorrow but don't hold your breath.

Privacy and support

With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.

I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with  her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.

Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.

My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.

My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations

When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.

Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.

The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping -  have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so.  And if there are repeated requests over and over the patient's stress mounts at an already stressful time.

A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.

What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

Insurance wars and woes

This morning's news includes a story on a gentleman with stage IV esophageal cancer who is disputing with his insurance company to cover the costs of his treatment. He is treated at Dana Farber and is pursuing alternative treatments. I am fully supportive of efforts to prevent insurance companies from making medical decisions.

Also, I am a big fan of preventing bloated insurance costs where people expect everything to be covered and then can't understand why their premiums keep going up in leaps and bounds. There has to be a happy medium while is why insurance companies need to be allowed to draw the line somewhere.

As you are aware, I do not believe insurance companies are capable of making individual medical decisions. They may employ their own oncologists and other doctors to review decisions. But unless the doctors have met with the patient and examined them, they have no idea what they are doing. At the very least the patient's doctors recommendations should be the guidelines followed. Not someone who is reading an actuarial guide and cost/benefit analysis. That is no way to make a decision that might permanently affect some one else's life.

However, and this is a big fat HOWEVER, if the treatment has not been shown to have any proven results I do not believe the insurance providers should be required to cover it.

There are all sorts of quackery theories on curing cancer and myths about treating and curing cancer. There are also many alternative treatments that are not necessarily covered by insurance but have proven to be beneficial to cancer and other patients. This would include things like acupuncture.

The problem with this gentleman's request is that he is asking for coverage for something called Insulin Potential Therapy or IPT. I googled it and the first two results were from Quackwatch.org and from the American Cancer Society showing that there was no real proof it works.

While I understand he is fighting for his life, I am actually on the side of the insurance company here. The treatment he wants has not been shown to be effective. He has a full medical team available to him where he is being treated. While he may be feeling better currently, there is no way to tell if it can be attributed to the IPT or some other reason.

An annual pledge against pinkification

As we approach the month of Pinktober (with 30 days advance notice), it is time for all of us to raise our hands and pledge the following. Please join in.

Raise your right hand and repeat after me:

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

We need to focus our efforts on research and screening services for under served populations. We do not need any more awareness. The American public is plenty aware of breast cancer at this point.

Between now and then September is Prostate Cancer, Childhood Cancer, Thyroid Cancer, Leukemia and Lymphoma, and Ovarian Cancer month. It also contains the Jewish holy days of Rosh Hashana and Yom Kippur. Those all seem to be overshadowed by the looming Pinkification of October.

In October, there are other lovely holidays to support. Halloween for one - the one where we dress in costume and eat lots of candy, never mind Columbus Day and a host of other minor celebrations.

November includes many events including Veterans Day and Thanksgiving but it in recent years the squabbling that has resulted from Pinktober overwhelms everything until Thanksgiving. It also includes the great American Smokeout, Lung Cancer Awarness and Pancreatic Cancer awareness month.

What I am trying to say is stop supporting on pinkification and focus on research and screening for underserved populations.