Are we all braced????

It starts tomorrow. That ugly pink month. Go celebrate Columbus Day, Halloween, apple picking, leaf peeping and other seasonal activities. Go help organizations with their fundraising activities that do not require pink feather boas.

For myself this month I am doing the following:

• Arranging a luncheon for a non profit that I volunteer with. 
• Awaiting a back procedure which should relieve a lot of my current pain at the end of the month.
• Enjoying a family reunion on the coast of the Pacific Northwest - some place I have never been and always wanted to go. (We always have a house/cat sitter while we are gone so burglars, don't even think about it.)

This is what I am not doing:

• Wearing more pink clothing than I usually do. I like the color pink and have many pink pieces of clothing.
• Participate in any pinkified event
• Purchase any non-essential pinkified item.

Will you join me in boycotting pinkified items and events?

Thank you.

How idiotic, insensitive, and just plain dumb!

I read this article and the first words pissed me off:

'“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”...'

Why is the word cure being used in conjuction with breast cancer? There is no cure! (Insert expletive here). At first I questioned his percentages and it is true that just over 200,000 cases of breast cancer are diagnosed in the US each year and just about 40,000 women will die from it. 40,000 is 20% of 200,000. I don't think the other 160,000 consider themselves cured, more like they spend their lives in watchful waiting. And a woman diagnosed with breast cancer can die of any number of other causes besides breast cancer before their disease becomes terminal.

'“What we are left with is this 20 percent where clinic-based drugs are not adequate, but we mustn’t burden the 80 percent for whom today’s standard is adequate, giving those patients unnecessary and experimental treatments,” he said.'

Really? Can you tell me which of the women with diagnosed with breast cancer are in the 20% or the 80%? We have some ways of telling but many women get breast cancer who have no know risk factors. Like me. 

Here's more: 

'In years past, treatment of breast cancer was limited to surgery, chemotherapy and radiation. Today, drugs are being used to rid the body of cancer cells before surgery becomes an option.

“That method has several effects. One, you can get away with lesser forms of surgery - lumpectomy vs. mastectomy. More interestingly, you can track the effectiveness of the drug by observing what is going on in the breast. Maybe in the future we will be able to track effectiveness by looking at what is happening in the blood,” Ellis said.

Very few people today die from cancer in the breast, he noted.

“The problem becomes the cancerous cells that have left the breast. They are more difficult to track. If you could chase those cells with a simple blood test, that would be real progress,” Ellis said.
The cancer cells, once they leave the breast, often find their way into other tissues and organs. Ellis describes the cancer cells as weeds that are allowed to take root.

“If you have a dose of weed killer and you pour it on a tiny little thistle or weed, it would kill it stone dead, but the same amount of weed killer doesn’t kill a fully grown thistle. It might wilt a little and then return,” he said. “That’s very similar to cancer. Once the cancer cells begin to grow and get embedded, they can be hard to get rid of.”'

I'll just go get some 'human cancer Roundup' and blast away at those weeds before they can take root. You just tell me where they will be and if I am in the 80% or the 20%.

“The problem with mammography is that it is recommended in everybody every year after the age of 40, but only 1 in 8 women get breast cancer, so you are screening a lot of women who are destined never to get breast cancer,” he said. “High-risk patients might need yearly mammograms, but low-risk people might need it every 3-4 years.”

Hmmmm.... I was not at high risk twit face!

'When asked what can be done to reduce a person’s risk of developing cancer, Ellis said the biggest key is pursuing a healthy lifestyle, which means maintaining a good Body Mass Index (BMI).

Cancer made me fat. Starting with steroids in chemo causing bloat.

“A lot of women under-appreciate the role of alcohol in breast cancer risk. That is clearly dose-related,” he said. “Women who take more than a drink or two a week are gradually increasing their breast cancer risk. The more you drink, the higher the risk, so moderate your drinking as much as possible.”

Okay. Fine. Sobriety it is. Take all the fun out of life. As long as I can still have chocolate.

Medical screening is recommended to assess a person’s risk of developing cancer.

“If you have a family history, even if it doesn’t seem very impressive and the risk is small, get yourself over to chat with a genetic counselor. Genetic counseling and genetic risk assessment are still highly underutilized by the population,” he said.

Genetic testing is covered by most insurance, according to Ellis.

I didn't have a family history. None, nada, zip. Actually one of my aunts did some research and found that the only family history of breast cancer was one of my mother's second cousins back in the 1970s. I believe that the BRCA genes are responsible for only 5-10% of all breast cancers... So what about everyone else?

“There is no discrimination these days. That’s what prevented some women from testing because they were afraid they wouldn’t be able to get medical insurance based on their results. ObamaCare ended that,” he said.'

No discrimination? WTF? Get real buddy. Unfortunately there is a fair amount of discrimination these days against people with cancer and many other reasons. Insurance companies haven't necessarily jumped on the bandwagon of paying for genetic testing. And the question of gene ownership and patenting is still up for legal debate in some parts of the world.

Go read the rest of this article here. And the man cited here is the director of the Breast Center at the Baylor College of Medicine. He clearly has not walked the walk and has no bedside manner. He does end by saying more research is needed - especially for him...

This article made me so upset. I felt he was talking down to patients and making statements that just weren't true.

One of my other ailments

No today's post is not about my cancers. It is about one of my other ailments - rheumatoid arthritis. This is the ailment that makes my hands and feet hurt and getting out of bed in the morning a bit difficult. As opposed to rheumatoid which makes my whole back hurt or my degenerating disks which resemble an ice pick in my spine when its cranky or my left hip bursitis which also can remember an ice pick. (And I am on all the good drugs.)

The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.

However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.

I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).

So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!

A warning

Please brace yourself for the annual onslaught of pinkification in the month that starts on Wednesday, formerly known as October but know is Pinktober.

Pink is not the new black. We do not need a world wrapped in pink. Buildings lit up in pink do nothing. Football players dressed in pink do nothing. Regular items, including kitchen utensils, trash barrels, clothing, changed to pink do nothing. We are all aware of breast cancer.

If it makes you feel good to pay for something pink, please read the fine print. The advice to all is to do your research before donating to a cause to make sure you know how much is really going to the cause. However if you are in a store with a huge display of somethingfabulousinpink and you succumb to the pressure and decide to purchase it, please stop, breathe and read the fine print.

If it says 50% from all profits go to somepinkfund, put it back. What that means is that 50% of the manufacturer's profit is probably some tiny amount. For example, if the item costs $50, the wholesale is probably around $20-$25. The manufacturer probably sends it to a distributor who marks it up another 30%. So a quick shot at doing the math means that the manufacturer sells it for around are around $15 for the $25 wholesale item. And the manufacturing costs probably are around $13. (Note these are rough estimates but I do work in marketing and at a distributor so I am probably in the ball park to give you an idea.) So the 50% of the profits are maybe $1....

You are better off buying something you would prefer that is not pink and sending a check to your favorite charity.

Besides that pink item will probably clash with the rest of your kitchen and will get hidden away.

So skip the pink bandwagon. If we stop buying pink stuff, they will stop making it (some day....).

Non-helpful medical tests

A few weeks ago I had a sleep test and then an elbow MRI for separate issues. And the results? Nothing, nada, zip, nil. For both.

My PCP ordered the sleep test to see if I have apnea or other issues which may be interfering with my sleep. She said in addition to apnea, it can diagnose all sorts of problems. I did not sleep through the entire night of the sleep test even though I had taken an Ativan to ensure that.

And the results say 'no apnea' and nothing else. I asked my PCP about it and her suggestion was talk to behavioral (psychiatry) medicine about it and/or come see her when she has an opening. I am doing both.

Since I was headed to my meds therapist yesterday, I asked her about it. She said to try mild sleeping pills and take half a tablet when I can't sleep. And I can take up to two a night if needed. I don't remember what they are but will pick them up later today.

I also have an appointment to see my PCP in November. The problem with not sleeping and having RA and fibromyalgia, that cause fatigue, I need to get more sleep. And then I can't sleep. Which really sucks.

And my MRI, as I think I said previously, says it shows some bursitis but my doctor disagrees.

Aren't these helpful? Not really.

I'm reading

Earlier this year the movie, "The Fault In Our Stars" came out. Everyone raved about it. I wasn't sure. I never saw it. But I did sign up in the library to read it. I was something like 453'rd in line to read one of 20 copies.... I figured it would take a very long time.

And Tuesday I got the magic email that finally there was a copy available for me. Tuesday night I downloaded it and started reading. And reading. And reading. I read some more yesterday. And even more last night. Its only 200 pages but I have been busy so I haven't been able to sit down and read for a few hours.

I am most of the way through it at this point. I know what happens at the end essentially so you can't really spoil it for me but I do want to read the rest.

What do I like about it so much? Well the insights into life with cancer. I can relate to lots of them. You know all that stuff that gets donated to cancer patients? They call them Cancer Perks. You know everything from the free hats for bald patients to the autographed sports stuff from athletes.

I love the vocabulary introduced throughout it. Its kind of teenageresque but I can relate. The protagonist (fancy word this early in the day) had thyroid cancer which has made a nice colony in her lungs. If you haven't walked the walk, you may not get it.

But I digress. I plan on finishing it. I may reread it (I have two weeks and I think there are now less than 200 people on the waiting list for one of the 20 copies). And I want to do a little more research. I think the story is somewhat based on a real teenage girl and I want to find out more about the author to see how they managed to write with such insights into cancer land. I might even watch the movie sometime soon.

But in the meantime, I will keep reading and I recommend it for anyone in cancerland.

Cancer causes

Let's see how I do on this one.  The American Association for Cancer Research just announced the preventable causes of cancer in the US.

1. Tobacco - I quit that a few years back
2. Cancer made me fat. I wasn't fat until breast cancer treatment.
3. I have no idea about cancer causing pathogens.
4. I go to the gym 3x each week and get 1 hour of cardio each time followed by 30 minutes of weights, machines, and stretching.
5. Fruits and vegetables every day. A minimum of two pieces of fruit by noon followed by salad and/or green vegetables with dinner. 
6. I have never been to a tanning salon but do go to the beach. I don't remember the last time I got a sunburn.

So let's go back to the 'why me?' question.... No let's not. Anyhow more discussion on this can be found here. I'm doing the best I can.

The schedule juggle

Let me preface this all by saying I work part time with complete flexibility in my schedule and I can come and go as I please.

All I was trying to do yesterday was to schedule three fifteen minute appointments for a medical massage for my sore hamstring. The goal was one yesterday, one on Thursday, and one next Monday. The result was one yesterday, one tomorrow (Wednesday) and one October 12. To be fair, I will be out of town for a few days which complicates the matter. And the tech who does the massages only works Monday through Thursday.

I couldn't go Thursday because I already have to work and have two appointments in the afternoon. Tomorrow worked but I had to reschedule a different appointment and move it to today so I could fit it in. Next week the only times he had were ones when I wasn't available.

That is just this week. My schedule is not what we call empty and relaxing with a part time work schedule. I am always running around some place. Today is work, farmer's market, Dr appointment, and hair cut. I will leave at 730 am and return around 530.

Then sometimes when I am having a 'bad spell' (doesn't that sound antiquated or something), I just ditch everything and hibernate. That is what I did on Sunday. After our party Saturday, I woke up with bags under my eyes....

My body doesn't tolerate the schedule juggle and ensuing long, full days, any better than my calendar does. And every little change is complicated for both.

Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:

And which are the top states with the highest rates of breast cancer?

1. New Hampshire (141.7 incidences per 100,000 people)
2. Massachusetts (135.5)
3. Connecticut (135.2)
4. Minnesota (135.1)
5. Washington (133.9)

I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.

Call me a moron

Let's start at the beginning. I forgot to blog yesterday. Completely forgot. It slipped my mind completely. But I do have an excuse, we had a small college reunion here yesterday afternoon and I was busy getting ready.

I also am a moron because I lost one of my favorite earrings yesterday at the party. I am still scouring the house  as we speak and hope it will turn up but not very optimistic because it is a small stud earring, but relatively valuable and sentimental as well because my husband gave me the pair.

Next on the list on Friday morning I thought I had a refill on my Tramadol (breakthrough pain medication) but when I went to refill it, the pharmacy told me that because the law changed (and I was supposed to know that how?), it can no longer be automatically refilled because it is one of those kind of medications (meaning it has 'street value' - all good drugs have street value. So I called my pain management doctor and begged to have a refill called in on Friday so I didn't run out over the weekend - this would have made me very cranky for said party.

Usually on Saturday afternoons, my big project is to refill our pill bottles and make sure we are both set for the week. I didn't do that yesterday because of the party. This morning I got up and my first task was to fill our pill boxes. This is when I realized that I don't have enough Lyrica to make it through the week. In fact I have enough for 2.5 days. This is a problem. Lyrica withdrawal is nasty. I did it once before and it was two weeks of hell.

I get Lyrica through mail order because of the cost. It is expensive. Normally it takes at least a week to get a mail order refill. Crap. And its Sunday. So here is my plan:

Step 1 - switch from 2 tablets daily to one a day. That will get me to Friday.
Step 2 - called my pain management doctor again and made another begging phone call to ask for two months supply to mail order AND a five or ten day supply to my local pharmacy for an expensive bandaid to carry me over.

But I won't have an answer until tomorrow to see if I can keep my fibromyalgia under control and avoid Lyrica withdrawal...

I NEVER mess up my meds. I always have a week's cushion built in so I don't run into these problems. 

Yes you can call me a moron for all of this. But I can also blame chemo brain, fibro fog and what ever else I have.

And if you happen to find the earring I lost yesterday, please feel free to let me know.

The Pessimistic Side of Curing Cancer

Two blog posts caught my eye this week on the problems with finding a cure for cancer. There is lots of hoohaa going on with we can cure cancer. There is even the deadline(?) of 2020 to find a cure for breast cancer. But here is a look at the other side of finding a cure for cancer.

The first article is on "Coming Together to Fight Cancer" that lists the five issues involved:

1. Cancer is not one disease. Its many diseases. 
2. There is a lot of effort going into treatment - chemotherapy, surgery, and radiation. Those are not cures. And a lot of the diagnostic advances (CT/PET scans) are also cancer causing tools.
3. Modern life styles are contributing to cancer rate increases - 10 fold in the last century.
4. There is not a lot of political will behind it. Politicians only care about the things that get them votes. They may say they support curing cancer, but is there budgetary support behind those words?
5. Apathy. Those touched by cancer range from rabidly vigilant to fairly laid back on their stance on finding a cure for cancer. But the lack of action prevails.

The next article refers to cancer as "An Unstoppable Killer: New Research Shows Cancer Cant Be Eradicated". Think of it this way. Cancer cells have been known to form going back millennia on the simplest of beings. So if they form on very simple organisms, could they be part of the intrinsic basis of life? If so, can we cure cancer without destroying some of the very basics of life? There is a lot more detail in the article itself so please read it.

Now all that being said, what can we do if we can't eradicate cancer? We can help lower the rates of cancer by returning to simpler lifestyles without chemicals, synthetic food made of chemicals, no tobacco use, more exercise, etc.

What if we tried that? In Australia, there used to be soaring rates of skin cancer. Now there has been a dramatic decline. Why? They started promoting sun screen use, put shades over public pools, encourage people to wear hats etc. That doesn't sound hard does it? A few little changes can make a big difference.

Remember the big hole in the ozone? With the decline in use of aerosols and pollution reductions with the Clean Air Act, the ozone hole is in showing signs of repair.(I read it somewhere this week but of course I cant find it now.)

So lifestyle changes may be able to help decrease cancer rates. If we can't cure it, maybe we need to focus  on decreasing its presence.
So instead of spending billions on expensive medications that might extend a patients life by up to six months, what if those billions were spent on promoting healthier lifestyles and

Celebrating more birthdays

The American Cancer Society has/had a campaign on celebrating more birthdays. Really its just another way of saying 'another year on the right side of the daisies'. I'm all for it.

There have been times in my life where I would think 'if I make it to X, I'll do Y'. I was going to have a party 20 years out from my first cancer diagnosis, then 25 years out. It still hasn't happened.

But it was thrown off course with a second cancer diagnosis 25.75 years after the first. Is that right? I'm doing math in my head early in the day so I'm not sure. But I think it is after counting on my fingers a few times.

That means I had 25 years of more birthdays in cancerland. Followed by 7 years of more birthdays in double cancerland. (We are not hoping for triple cancerland.)

What is the significance? I'm not sure. I am at a time in my life where I feel I hear about more and more friends who do not make it. Last weekend an old high school friend who I haven't seen in decades died in his sleep at age 52. And he had no apparent health issues. How sad.

But now I am celebrating more birthdays and enjoying it. If you must know I am 37 again. And I'm still here.

Life in pain

Recently the National Pain Report did a survey on women in pain. I was one of the 2400 some participants... You can read the results here if you wish.

I have a few takeaways from the survey:

• If you aren't happy with your doctor, for example they tell you your pain is all in your head, it might be time to find a new doctor.
• If you have problems with the side effects from your pain medication (constipation is common with opioids, for example), it might be time to find a new medication. I am on an opioid pain patch and do not have constipation issues (if you must know) but I get a lot of pain relief with it.
• It is nice to know I am not alone with multiple pain issues
• Women do feel pain differently then men.

But then it is sad to know that women still feel discriminated by the medical system.

But we are all still here....

Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.


So what did you think? Why don't we all have cancer?

Germs, germs, germs, and more germs

Germs are everywhere. We need the good germs to build our immune systems. I am not a germaphobe..... You will not find me using hand sanitizer unless there are absolutely no other choices. I do practice the basics. I wash my hands regularly and especially when cooking, before and after the gym, after using the bathroom and all that. But 100% germ killers aren't good. They kill the good and bad germs.

 With my immune system I am told that I should avoid sick people and blah-blah-blah. I ignore that part and live my life. I refuse to live under a rock. I go out in public. I don't hang out with people with a cold.

But there are a few germs which concern me. The flu so I get a flu shot. Maybe I'll get a pneumonia shot as well. I also have gotten the booster for whooping cough and the others. I am concerned that if Ebola got here, we would have problems. That disease that is affecting children all over the Midwest is not a good thing.

We need to have ways to get rid of the bad germs but keep the good germs in life.

Meanwhile back at the rheumatologists office

Monday I went to see the rheumatologist's nurse practitioner for the first time. She has the best decorated exam room.

And she has a whole wardrobe in the bottom drawer of her file cabinet. I can't wait to see her next outfit.

But I digress. Because of the mystery cysts/nodules on my elbow the NP asked me if I wanted to try switching from methotrexate to something else.... in case the bumps are rheumatoid nodules caused by methotrexate. She offered me Xeljanz. I opted to wait until we know what they are before making a change. Changing one medication often requires changing multiple medications for me so I do not quickly jump on that bandwagon.

I went to my before the birds MRI on Friday and should get the results tomorrow. Yesterday I also got the x-ray results on my elbow which say "Mild soft tissue thickening over the olecranon, consider bursitis." How helpful. But the NP made a note saying we will know more after the MRI results.

In the meantime, I decided to do a little research on Xeljanz as a treatment option. It costs a paltry $25 per day at the regular pharmacy or you can do the math - one hell of a lot each year. The mail order pharmacy should bring that down to $105/month which is much better but still. As a comparison, Methotrexate costs me $8.70 for about four months of drugs and needles.

Then yesterday in the mail, I received a box. From Pfizer???? What did they want? It was almost big enough to hold a bottle of wine (wishful thinking). I opened it up and found:

 Now I think I know what the Xeljanz capsules will look like.... And inside the giant pill was:

• Ready for a change booklet - questions to ask your doctor
• Your body was made for better things than RA - a hefty brochure containing the prescribing safety information
• A lovely letter congratulating me for taking the first step in considering a change in medication
• A day by day RA symptom tracker complete with little colored post it notes (Made in China) to use to mark each day's efforts
• A co-pay savings card. With a maximum of $8000 in coverage each year - or the card to suck people in to switching.

Well, now my little marketing brain kicks in. Some how, I am on a list of people who said they are taking methotrexate for RA - I probably took some online survey or something.... I don't really care how they got my name and address. And then the marketing people said "let's send all these RA methotrexate people information on switching to our expensive new drug."

Then they dreamed up this lovely box and giant red and white capsule to fill with expensive marketing tools. My educated guess as  amarketing person that it cost about $8 to print everything and get it in the mail, which is expensive as marketing premiums go, but nothing compared to the billions they make every year.

But its a waste for me - except for the co-pay savings card - as I do not base my decisions on marketing crap from big companies but on what my doctors suggest. And I want my MRI results before doing anything.

Up before the birds

This morning I got up at the perky cheerful hour of 430am. And it was intentional. Why you say? Because I had an MRI of my elbow.

I always take the weird time MRIs. MRI machines need to run continuously because it takes too long to shut them down and bring them back up again. There are always appointments available in the middle of the night or on holidays. I once had an MRI on Easter Sunday. Easter isn't a big deal for us so I didn't mind.

I digress. This morning I was up before the birds. It was dark and quiet when I went out my door. The sun was just beginning to come up but I didn't get to see the sunrise. It was dark when I got there with just a hint of the coming day.

So anyway, I bet you are dying to hear about my elbow. This is the same elbow that had tennis elbow a couple years ago that came back again. I wear a splint often on my right hand because of the tennis elbow and arthritis. Recently I discovered I had a bunch of cysts on my elbow. My PCP and rheumatologist said to keep a eye on them and let them know if they get bigger or hurt.

Of course they got bigger and hurt, especially when they get squished. Note to self, don't squish the  whatevertheyares or they hurt for hours. But we don't know what they are. They could be cysts. They could be rheumatoid nodules as a side effect of my methotrexate. But cysts and nodules don't hurt when squished.

So the mystery looms. I had an x-ray earlier this week and had the MRI this morning. We should know results next week. This may mean changing my RA treatment... But if you have had breasts cancer you can't have a lot of the newer biologics. So the fun continues.

Now I might need to go to bed early to make up for getting up so early.

My husband thinks I should get to  name my  new ailment because its probably something weird. And with everything I have I should get to name something after me...

So what do you want to do with the rest of your life?

Cancer diagnoses interfere with long term planning on many levels. For a while I wasn't sure I would be around for retiring. My husband and I have relatively vague plans to pay off the house and then retire sooner as opposed to later but probably not for a while yet.

Last night I went out with an old friend from junior high. She got out of college and got a job where her father worked for a year or two. She has been there for more than years and plans on retiring in a few more. Her husband has stage IV colon cancer and she doesn't want to have worked through the last years of his life. They have even met with a financial planner to discuss this.

Her big plans are to take a year off - something she hasn't ever done, even when her child was born - and do nothing. She hopes to eventually maybe volunteer at a food pantry, go back to work part time, or come up with a hobby to keep her busy. They want to downsize their main house and keep their vacation house and split their time between the two. She has plans for the rest of her life.

What do I want to do with the rest of my life? Stop going to the (damn) doctors. Stop being in pain. Feeling better. Retiring quietly to garden and knit with my husband (he won't be knitting) someplace where we can sit on the porch and admire the view. Too bad I don't have any details on this yet. Maybe its time to start planning.

A bit of overkill?

When is it a bit too much??? There is a new study out (of course another study - just what we needed) where the author calls for across the board BRCA testing. Yes really. Go read it here. And you can read what Dr Love thinks about this here.

My thoughts are now I know why people want to live off the grid without government interference. This really goes a bit too far.

I know breast cancer is a bad thing. The BRCA genes are responsible for somewhere around 25-30% of all hereditary breast and ovarian cancers and 5-10% of all breast cancers. So of the 250,000 or so breast cancer diagnoses each year in the US, this might lead to detecting 12,500-25,000 cases of breast cancer early.

I honestly don't see the benefit of testing millions of Americans to 25,000 cases annually. I know the cases add up and each person gets tested once so its not that clear but I do not see the cost/benefit ratio here. As Dr Love points out, who is going to pay for all this? The Affordable Care Act would probably want the insurance companies to pick up the tab - and you know the cost of that test is going to hit your premiums somewhere/somehow. And since men can carry the BRCA gene and get breast cancer, they would need to be tested as well.

And if you test positive for the gene you can take preventative measures such as tamoxifen and mastectomies but there is no guarantee you can prevent yourself from getting cancer. You can only reduce your risk.

I think the current system of looking at family history and then making educated decisions on a one-on-one basis with each person's doctor is better. Because if you look at the numbers the other way, 90-95% of the cases of breast cancer diagnosed each year are not due to the BRCA gene.

Before we go for across the board testing for anything, we need to look at the incidence of the disease being screened and the cost benefit ration. Breast cancer isn't contagious as so many think.

This is going in the wrong direction

Australia's Federal Court has allowed companies to patent genes. This is contrary to what recently happened in the US Supreme Court. Why? I say, why? What were they thinking?

The only piece of logic I can find here is this:

"Director of Advocacy at Cancer Council Australia, Paul Grogan, said that, if the ruling was an interpretation of the law, then the law needed to change.

"In 2008, Australian women were only protected from an attempted commercial monopoly over the BRCA1 and BRCA2 tests because the company that threatened to take those tests away from public laboratories withdrew its patent claims voluntarily," he said.

"There was nothing in the law to protect healthcare consumers ... and there still isn't.

He said Australia might now end up finding US companies enforcing patents here that they could not enforce in their home country after a Supreme Court ruling there that overturned the gene patents."

It is also expected to bring companies to Australia where they can patent human genes.

I agree it may be time to change the laws.

Raising cancer awareness

One rap video at a time....





He's 19 and should be a UCLA freshman instead of sitting in a hospital room with a chemo pole. Between treatments he created a rap song to show the every day life of a cancer patient which he hopes JayZ will hear and help him raise awareness about cancer.

I can verify it sucks to be 19 and diagnosed with cancer. Go for it Thomas.

I still hate tofu

I really dislike tofu. I mean if its cut up in a bowl of hot and sour soup that's fine. But I never order tofu in restaurants. Also due to the ongoing debate about soy and breast cancer, I am find standing my ground on not eating tofu.

And now there is more research to show that soy is bad for women in treatment with breast cancer.

"Adding soy to your diet in the form of milk or tofu, pictured, could speed up the rate at which breast cancer cells spread in those women already diagnosed with the disease, scientists have warned. 

The findings led them to conclude the soy protein could potentially accelerate the progression of the disease." 

The study was done on women who had been diagnosed with breast cancer and before lumpectomy or mastectomy.

"Jacqueline Bromberg, co-author of the study, said: 'Although the genes were being expressed, it is not clear that this will translate into actual tumour growth.

'But the concern is that there may be the potential.

'Only 20 per cent of those patients who took the soy had really high levels of the genistein metabolite.'
She said the reasons behind the disparity are unclear, adding that there is no way to predict who would have this reaction after consuming soy."

So there is no way of knowing if you have the reaction after consuming soy. so that keeps me off the tofu diet.

You can read more about this study here.

A very good book

As a cancer person, I am very skeptical of  'cancer' books. After thyroid cancer, it took me years before I could pick up a book about a young person with a life threatening disease or health condition. I remember throwing books that I had been enjoying across the room when I discovered that the story was about their health issue.

Then after breast cancer, I was eager to read my first graphic novel. I can't remember the title but it was about a woman with breast cancer's autobiography as her breast cancer returned and then she died...

So I am very skeptical to say the least.

Earlier this week a Bookbub email wandered into my inbox and offered me a deal on a new book about a woman dealing with breast cancer metastases. I hesitated. I closed the email. I thought about it. I went back later on and said its only $0.99 or maybe even $1.99 and bought it. Then I waited a couple days before reading it, still hesitant.

Then I read it. It was great. Its not long but worth the read. Its funny, sad, happy, depressing, optimistic, scary, compassionate, and a great read.

"In the Mirror" by Kaira Rouda. Go find it. Unfortunately the library doesn't have any more of her books so I might have to resort to the bookstore (eek)!

A day at the hospital

Over the past two days I have spent several hours at the hospital (not for me). Sometimes I drive other people there.

It was a bit of visiting cancerland on Wednesday as I was in the infusion area. One of the nurses asked me if it was weird to be back there and brought flashbacks. I said not really as its been long enough. And that is true. I am okay with it and it doesn't bring huge flashbacks. As long as I am not the one in the big chair with the IV in my arm.

Yesterday I was getting us tea in the cafeteria, there was a woman in front of me in line wearing a pink and white striped shirt, with a pink baseball hat over her bald head. She was clearly ready for Pinktober. And comfortable showing the world her ailment.

While waiting in the radiology department, we all got a snicker as a man walked out of the dressing room and brought his shirt and shoes to his wife. I could understand the shirt but not the shoes. Why walk in stocking feet in the hospital? Icky.

Later, in the lobby there was a woman in dressed in a hospital gown at the ATM machine with her IV pole. She was clearly a patient who went out for a walk to get some cash so she could go shopping at the gift shop. (Mental note to self, bring debit card for shopping at next inpatient stay.)

I made some small joke about taking an IV pole out for a daily walk as she went by. She replied with "they don't talk back and you can take them anywhere". Very true.

Enough hospitals for this week. I think all my appointments start next week. Crap.

$310,000/year

That would be a very nice salary wouldn't it? I wouldn't mind it myself. But its not a salary. Its the cost of a new drug to treat Gaucher's Disease from Genzyme.

Now scrape yourself off the floor for a second. Gaucher's disease is fairly rare. It is a genetic condition where if both parents are carriers there is a good chance their child will either have it or be a carrier. As it is genetic, there is no cure. But $310K/year? That's crazy.

"The cost of Cerdelga is not unusual for rare disease drugs that qualify for tax credits and patent extensions under the federal Orphan Drug Act, which covers treatments for diseases afflicting fewer than 200,000 patients. Gaucher affects only about 2,000 people in the United States, some of whom are on medications from competing drug firms. It affects fewer than 10,000 people worldwide."...

Okay so they cannot expect to earn that much back as there is a very small potential market for it. But if they get 1000 patients on it, that would be $310,000,000 annually in income.... No small potatoes there.

"“Gaucher is among the rarest of the rare diseases,” said Genzyme spokeswoman Lori Gorski. “The health care system already has been taking care of people with Gaucher disease. This is not a new burden on the system. This gives patients and physicians the ability to choose the therapy that is best for their circumstances without consideration of the price.”"

So previous drugs were just as expensive. Wouldn't a benefit be to make a lower cost drug?

"“It poses a challenge because a lot of these drugs are really breakthroughs and they’re drugs you want patients to have access to,” said Brendan Buck, vice president for America’s Health Insurance Plans, a trade group. “But they’re coming with increasingly high price tags that could become unsustainable for health plans, Medicaid, Medicare, and private businesses.”"

Breakthrough drugs are great but great big price tags are not great.

"Gorski acknowledged the manufacturing cost of the Cerdelga pill is less than that of biotech drugs such as Cerezyme, which are produced through an organic process in giant vats called bioreactors. But she said other factors come into play in pricing a drug, such as development costs, the clinical value it brings to patients, and the rarity of the condition."

The clinical value it brings to the patients. Hmmm... How much the companies think a patient will pay. That's the key. I can understand if its treating a very rare condition making a small potential market as I mentioned above. But by taking into consideration the clinical value, aren't they putting a dollar value on the patient's life?

Thyroid Cancer

How the heck do I do this every year? We all know Pinktober is looming like a huge pink layer of smog over us all. But September is Thyroid Cancer Awareness Month.

It has been in my life since 1981 but we are not good friends. I am stuck on a daily pill forever. Sometimes there is that ice breaker question of  'what would you want with you if you were stuck on a deserted island?'. While I might want to say the entire set of Proust ("Á la recherche du temps perdu") in English to decipher and perhaps attain enlightenment, I would really need to say a 20 year supply for thyroid supplement - or enough until rescue.

I am tethered to a little bottle of pills as a result of my little frenemy. And I get blood tests and all sorts of extra doctor appointments. And the best part is it has been known to recur up to 40 years later.... So I will probably never be off the hook.

Thyroid cancer is one of the few cancers which is increasing in prevalence. While the average age of diagnosis is rather late, 50 or so, it also occurs relatively frequently in young women - teens through 20s.

And the best part is it leaves you with a lovely scar right across your neck - that looks like someone tried to someone tried to cut your  head off. Until it finally fades to a white line. But a scar is a scar and it never tans.

But check your neck - thyroid cancer and goiters are the reasons your doctor presses on your neck and says swallow during regular exams. You don't want my frenemy.

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:

• A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  
• A lump or thickening in the cheek that you can feel with your tongue
• Loss of feeling or numbness in any part of your mouth
• White or red patches on the gums, tongue or inside of mouth
• Difficulty chewing or swallowing food
• Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
• Swelling of the jaw causing dentures to fit poorly
• Change in voice

Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.

Living with medical errors

I have a picture some place of when I went for knee surgery in 2001 of me home from the hospital with a big bandage on my right knee and the word "NO" scrawled in big letters on  my right knee. This was written by the surgeon after triple confirming with me.

Then I have the memory of me after gall bladder surgery in 2008 where I heard the nurses talking about the excessive bruising on my abdomen after a laproscopic procedure. Basically I heard the doctor must have been really rough on me because of the size and speed at which the bruise arrived - and ho w long it hurt afterwards.

In the past few years the state of Massachusetts has started requiring hospitals to report medical incidents - anything from a fall, surgery problem, wrong medicine, bedsores - annually. In the past three years - 2011-2013 - the rate has risen extensively from 366 incidents to 444 to 753 in 2013. And you say 'why the increase?' How about the electronic reporting system was adopted in 2012.

This all makes me say hmmmm..... Its nice the state wants the data reported and is requiring the electronic reporting system so that things can't be swept under the rug, so to speak. But what about me as a patient?

There is all sorts of advice given but I think it goes down to your comfort level. Lets face it, errors happen in life, 'to err is human'. But as patients we need to speak up and ask questions - what will happen, what should I expect, and communicate with family members so they can ask questions.

I would like to say that of the 753 events in 2013, 282 or 37.5% were from falls. The next largest group was 230 or 30.5% were from bedsores. The leading number after that was 44 serious injury or death from medication error.