Sunday, March 26, 2017

Making Breast Cancer Friends

You have breast cancer, I have breast cancer, we are now friends.... For life. That's just the way it works.

It also works with people with other types of cancer or other chronic ailments. There is a bond.

Stop by the chemo waiting room and you will find it full of people who become friends because they share a common bond - cancer.

Before breast cancer, I wasn't as open about my health (and I was a lot healthier) and I wasn't as quick to jump on the cancer bandwagon and make new friends. But now, its different. If you are open about your medical crap with me and we have similar diagnoses, we will be instant BFFs.

Many others do the same. I hope even more will.

Friday, March 24, 2017

Damn The Mutations, Full Speed Ahead

So now they want to tell us that cancer is mostly the result of genetic mutations, as opposed to other factors. I'm not sure how much of this I want to believe but I'll just say 'damn the mutations, full speed ahead'.

Cancer causes are supposedly:
  • 66% - mutations when cells replace themselves
  • 29% -  environmental factors
  • 5% - hereditary factors
So can we stop blaming our parents and our bad diets, and just assume none of it is our fault? Probably not.

As a normal part of life, cells divide and multiply and little mistakes happen all the time. Its just that sometimes they turn into cancer....

"Lifestyle factors still matter for cancer prevention.
Just one mutation is not sufficient to cause cancer -- typically three or more mutations must occur, Tomasetti noted. If, say, your cells miscopy DNA and so cause two random mutations, a third mutation is still needed. Obesity, smoking, lack of exercise and poor eating habits might supply that necessary third gene defect that tips your body into a disease state."

So go eat a salad, quit smoking, and go to the gym. And for those of us who were already doing all of those and still got cancer, can we please just blame bad luck and not blame ourselves?

Thursday, March 23, 2017

I Am Rebelling

Sometimes I need to let my inner rebel out and stop being such a good patient. I usually try to be a good patient (and go to my appointments, take my meds as prescribed, talk to my doctors honestly and generally do what they want me to). But not right now.

Last fall I was told I have sleep apnea and my doctors want me to have a CPAP machine for sleeping. I got my CPAP machine and hate it. I can't stand having anything on my face while I sleep. I am on my second mask and still cannot deal with it. I wake up and want to rip it off my face. If I sleep with the mask on, I don't ever feel rested and have the weirdest dreams.

I went back to my NP for the sleep department yesterday to talk about how I am doing with my (damn) CPAP machine. She said that because of the problems I am having, I could go to a plastic surgeon and they would do some kind of 'adjustment' and then I wouldn't need a machine. (The idea of any kind of surgery like that makes my skin crawl.) Since I have rheumatoid arthritis, no one wants to operate on me because I will not heal well. So we nixed that idea.

My next step is to go see the sleep clinic for CPAP mask for desensitization therapy to get used to the (damn) mask. I am not sure this is going to work for me. I have already tried everything from taking naps with the mask, wearing it when not trying to sleep and just resting, but its not working.

If I fall asleep with it, I end up taking it off shortly afterward because I can't sleep with it. And the whole point of a CPAP machine is to sleep better. I haven't slept better with it at all. And I got it at the end of January.

This is a long way of saying that, while I am willing to actually try a little more to get used to the (damn) mask, I am running out of patience and am not going to try that hard based on two months of treatment so far. Frankly, I do not expect the machine to work for me at all. So my inner rebel is saying, while I will give it a try, I am done making a giant effort.

The (damn) mask has been hanging on the back of the bathroom door for a couple of weeks. It is staying there until they explain the desensitivity therapy to me and I get to try it.

I know apnea leaves to all sorts of issues including fatigue, sleepiness, weight gain, snoring, etc. I also know that I really hate the (damn) mask.

Monday, March 20, 2017

What Do You Want To Be When You Grow Up?

I always hated that question: what do you want to be when you grow up? Or, the job interview variation, where do you see yourself in five years?

I admit to asking it of potential candidates when interviewing them to find a new employee. I did ask it, not because I cared what they wanted to be or where they saw themselves, because I wanted to see how they responded when put on the spot.

I digress. I finally have an answer to what I want to be when I grow up. I admit it may have taken me a bit. But now I know.

I want to be healthy.

That's it. Is that too much to ask? I don't see it as being unreasonable. I think its a great goal. To be healthy.

Sunday, March 19, 2017

The Really Bad Reason For Decline in Cancer Rates

There is a really bad reason for declining cancer rates. That is when people lose their health insurance and stop going to the doctor. New research has recently found that as people lose their jobs, they lose their health insurance and stop going to the doctor so fewer cancer cases are diagnosed.

"As the country plunged into recession between 2008 and 2012, something unexpected happened: An earlier small decline in the number of new cancer cases became a much bigger one."


"A 2015 analysis in the Journal of Cancer covering the years from 1973 to 2008 found that the incidence and treatment of cancer in the United States dropped during recessions and with increased unemployment rates.

During such periods, patients were perhaps more likely to forgo tests for early detection or ignore symptoms due to financial consideration, the researchers suggested."

Unfortunately this does make sense. If you lose your job and can't afford to pay Cobra coverage, medical visits will probably cease. If you don't see a doctor, you can't get diagnosed with anything. 

[This isn't a political post but now our new president wants between 14 and 24 million people to lose their health insurance. (Just saying....)]

This shows the value of health insurance. And its not just cancer. If you don't go to the doctor there are lots of other things that can also eventually kill you. If you don't have insurance, you really want to be careful about how you are feeling and if you do feel something is wrong, find some  place, any place (besides an Emergency Room) to get checked out. You are your best advocate.

Damn, the politicians.... But its not a political post.

Saturday, March 18, 2017

Back to Breast Cancer Stuff

(So my plan is coming together and my life goes back to reflecting on breast cancer crap.)

Earlier this week, the FDA approved a new medication to be used with Letrozole (Femara) or other aromatase inhibitors for hormone positive metastatic breast cancer patients. This medication (which I can't pronounce and just think of it as the 'kis...') is called Kisqali (chemical name: ribociclib). It works similar to Ibrance... Not that that means much to me but as a reference.

My real concern is the cost. Ibrance costs $9850/month for treatment. Not cheap. All new cancer treatments seem to cost so much. 

But I am pleased to learn that Novartis has developed a flexible pricing plan for Kisqali;
"The med—a first-line treatment for HR-positive, HER2-negative breast cancer that will compete with Pfizer’s Ibrance—will roll out as early as Tuesday under a flexible pricing structure, the company said on a conference call following Monday's FDA approval. A 28-day supply of the 600-mg dose will cost $10,950, while the same supply of the 400-mg dose will go for $8,760 and the 200-mg dose will run at $4,380."

My hope is that now there will be some price competition between the two. Not that many stage IV cancer patients do much price shopping while looking for treatment but maybe the insurance companies will.

However, the best thing is that more cancer drugs are being developed and are finally hitting the market. 

Friday, March 17, 2017

Forming the New Plan (Part 3)

So, my new plan is forming. I have done some thinking and some research. I also talked to my therapist and she gave me a few ideas. My biggest weakness is that I cannot over-schedule, over-commit, or over-stress myself. I need to pace myself.

I have found some events to attend - a gardening as therapy event at the library and the next monthly Garden Club meeting. Of course they are only two days apart. I hope to get my husband to go to the first one with me as it is on a Sunday. He might.

Going forward I hope to join the garden club, but their year runs September - June. They only have two more meetings this spring. I am also going to keep my eyes out for more events at the library.

So if I find an event or two there each month, add the garden club meetings, that will get me out of the house more. I should actually learn some things there too.

That's my first step. I also plan to reach out to the Senior Center to see if I can do something there. My therapist suggested starting a knitting/needlework group there. They already have a knitting group that meets at the exact same time as my other knitting group at the cancer support center.

However, I am not sure I want to commit myself to another weekly obligation. Well, its not that I don't want to commit, its that I am not sure I am physically able to commit to one. (See that's the problem....)

Starting in April, gardening season will begin and I can fill my time outside. No I can't plant anything until mid-May but I can plan and prepare. I have already started my snapdragons inside.

Then I have a friend coming to visit in May. I will go to the beach to visit another friend in June for a few days. More travel over the summer.

This is a start. The plan will continue to come together.

This is me getting my mental state together again and forming a new plan.

Wednesday, March 15, 2017

The Bad Plan (Part 2)

After moving and I came up with my 'plan' on how I would adapt to moving to a new community and stop working at the same time. But it doesn't seem to work as well now.

For the first months after we moved, I was really busy. I worked on our new house. I painted rooms, I started gardening, I got us settled in. Once you unpack you still have a lot more settling to do.

My house painting skills have improved but I go very slowly. It took me two weeks to paint one hallway. I did one side one week, and the second side the next. I spackle one day, sand the next, wash the walls, tape, and then paint - primer and two coats.... I have to break it up because i can only work for a short period before needing a break. The living room took three weeks.....

I still have more painting to do - dining room (2 walls), kitchen (2 walls), and half the basement. I also have to go back and fix some areas..... This could take me months. I promise I will get to them but some days I look at the amount of exertion required and decide I am simply not up to it.

Therein lies my problem. I get too tired. I can take days to recover from too much exertion. For example, we went some place and had to stand in line for 45 minutes. It took me 3 days to recover. If I go out for a few hours and do anything that requires standing, I come home and lie down. It is not uncommon for me to come in from the gym and the grocery store and be too tired to put away all the groceries, or even carry them inside.

I also want to garden more. Last summer, my husband worked very hard and doubled the size of our garden, significantly reducing the amount of lawn. Then we had a drought so gardening came to an end.

I think part of my problem is winter is long and it greatly limits my activities outside. I do my weaving and knit inside year round but a little fresh air now and then is appreciated.

Right now I just want winter to end so I can do some gardening. In the past, I used to be able go out and enjoy winter - hiking, skiing, snow shoeing, etc - but those have all come to an end.

As winter has dragged on, I have spent more and more time inside, by myself. My husband works full time. I keep meaning to go up to the senior center and meet more people but its 20 minutes away at the farthest end of town. I am a little young for the senior center (I can't join for five more years) but almost all their activities are during the day. I am not up to going out at night.

I have upped my volunteer work and am doing more with the local cancer support center. But I do it all at home by myself.

My plan is falling apart because I spent much more time by myself at home than I ever expected. I also have not met as many new people as I thought I would. You not easy to meet the neighbors if its winter and everyone is hiding inside. Most of our neighbors work full time and have children. I have neither in common.

I have maxed out my knitting and weaving and will continue. This is so I have enough for my craft fair months in the fall. But that's not very interactive.

I also have been having some health problems which further limit my life. My formerly good left knee became my new bad knee a year and a half ago. My formerly bad right knee which is now my 'good' knee and I have been overusing it to compensate for my left knee. It has decided to start locking up and I have already had some fluid drained to help but it will need more work.

On top of that, I have been told I have apnea and need a CPAP machine. So I got one and the mask was not right for me so I had to get a new one. The new mask still doesn't allow me to get a good night's sleep.

Last night for example, I was exhausted and took a sleeping pill. I slept for about 3 hours without my CPAP on, woke up and put it on for a couple of hours. I had the weirdest dreams and felt very restless. I gave up about 330AM and have been up since. (I think I need a nap.)

So the bad plan includes too much isolation, loneliness, and seclusion than I expected. I need to learn better to balance what I can and cannot do with getting out more. I also need to get more sleep period. Lack of sleep can be very serious and it also compounds other issues - both emotional and physical.

I am working on a new plan. But more to come.

Tuesday, March 14, 2017

Things Are Not Working As Planned

Sometimes, things just don't go as you wanted or expected. Its a fact of life and we need to learn to cope, change directions, and move on.

In the grand scheme of things, my original plans were that would I grow up, go to college, get a job, a career, married, kids, retire to a life of happiness and world travel. Well, we know what happened to that. I got as far as 'go to college' when my health started taking over my life. One little cancer diagnosis has a big emotional impact and it took time to get my life back together.

So I regrouped and started over at college, etc. The job and career went okay. I did eventually got married but it was too late for kids. (We didn't even meet until we were in our forties.) That's fine. We bought a house, traveled, had fun. But then my health took over.

I did get laid off just before my breast cancer diagnosis, and I had already had a hysterectomy because of other health issues since getting married two years before. (And no, getting married did not cause my health to fall apart.)

I regrouped again and started working part time. I got better and got up to two part time jobs that kept me busy between 35-40 hours each week. I was enjoying myself with some travel, some crafts, and mostly keeping my health in check... But not completely. My back was bothering me more and more. That went on for about five years. But I was doing okay.

Then, I was diagnosed with both rheumatoid arthritis and fibromyalgia. Both of which are responsible for pain and fatigue and greatly limited my abilities to do much. Neither of which have a cure and rheumatoid is definitely progressive. In six months from diagnosis, I had cut back working to one job at about 15-20 hours each week. Over the next three years, I cut back more and more until I finally reached the decision that I really physically could not work any more.

That was a financial hit that was hard for us. When we purchased our house, we did it based on what we needed at the time and could afford. Our house was going to be our forever house. But because I wasn't working in Boston, never mind at all, it was clear that we did not need to nor afford to live in such an expensive area. And I really needed fewer stairs in my life. Our house was a Cape Cod with bedrooms on the second floor, kitchen etc on the main floor and laundry in the basement. I would sit in the living room and ask myself 'if I went upstairs, how to could I limit the number of times I needed to go back up stairs, maybe not back up stairs until bed time.'

So we came up with the idea that we would move to a one floor house and cut our expenses. That would solve two problems at the same time. It would allow me better quality of life and loosen up our finances.

While we were house hunting, I realized that I needed a plan for my life after we moved. I needed a way to transition from working to being more home bound that I needed to figure out what I was going to do. Our new house is probably 25 minutes away from 'everything' - doctors, gym, family, etc. I decided I could work with that provided I had a plan.

I came up with a plan. Three days a week, Monday, Wednesday, and Friday, would be my 'gym, doctor appointments, family visit days'. The other two days, Tuesday and Thursday, I would not drive down to our old neighborhood and do other things in the new neighborhood. I also wanted to see if I could find a cancer support center to volunteer, allowing me to feel like I was 'giving back' and filling my time. I did find a place and started a knitting group. I go every Thursday afternoon and have made new friends. Tuesdays are my day at home and when I can meet friends for lunch or other adventures.

I like my life for the most part now. It works pretty well. I go to the gym three days a week and to my knitting group. I see other friends for lunch. I go to the library and am learning my way around our new neighborhood. But somethings are not working as planned.
[Part 2 is coming]

Saturday, March 11, 2017

Okay, I Haven't Been Blogging About Breast Cancer

I just don't blog about breast cancer as much as I used to these days. Why? Because I like to pretend it will never come back and bother me again. That is the honest answer.

When I was diagnosed with breast cancer, I lived the all breast cancer all the time channel. Slowly over time, I managed to tune out for bits and pieces. Now I am trying to pretend cancer will never come back and bug me bite me in the ass again. I am pretending because I can tell you that with cancer twice in my life there are not many chances it won't come back again. The odds are not with me.

Since breast cancer, or the mid 2000s, when my body started developing so many bullshit  ailments, I have found that it is possible that once you have cancer, and even if it doesn't kill you, no one wants to talk to you about any potential research. They also try to pretend they do not feel sympathy for you. They actually pity you because you are pretty untreatable for normal ailments.

I am not depressed. I am really annoyed that my ailments suck up so much time out of my life. I would like to pretend I am healthy but its not going to happen.

I think my real diagnosis is 'cynic' Or more likely bullshit cynic. But its not cancer.

Friday, March 10, 2017

Math Class is Important In Determining Your Cancer Prognosis

Who knew math class would be so important later in life? Here's the problem: You get a cancer diagnosis and your doctor starts spouting numbers at you. You survival rate is this, but if you do this treatment it could be more like this. All of us sit there in a daze looking at the numbers and blindly staring at your doctor and trying to make a decision.

If you are lucky, your doctor says 'take all these numbers with you and go home and think about it'. If you are unlucky you forgot all the math you ever took and can't decide if a 60% survival rate is better than a 40% death rate. And if you are afraid of math, skipped too many classes, or just hate numbers, you get really stuck.

However we have now medical research to the rescue as this is has become a recognized issue:

"Many of the toughest decisions faced by cancer patients involve knowing how to use numbers – calculating, evaluating treatment options and figuring odds of medication side effects.

But for patients who aren't good at math, decision science research can offer evidence-based advice on how to assess numeric information and ask the right questions to make informed choices."

So there is a bunch of research that was done and you can go read it all. In my mind, what it boils down to is this (and write everything down):
  • Ask your doctors for the numbers
  • Ask them to explain what they mean without using numbers - is this better or worse than average?
  • Ask about the risk in real numbers, not just in comparison. If something is 0.3% and its doubled, that is still a low risk. 
  • If there are too many numbers, ask your doctor to tell you what are the two best options and base your discussion and thought process on those.
Finally, take a number friendly person to go with you and explain all the numbers to you.

And stop worrying about all those missing math classes and forgotten algebra so you can help yourself determine the best treatment protocol for yourself.

Thursday, March 9, 2017

I Need A Vacation

After a lot of deep thought, I need a vacation. I mean a real vacation which does not involve medications, doctor appointments, and any aches and pains. I would prefer it include a beach, warm sand, and the feeling of health.

Just a thought.

Wednesday, March 8, 2017

Why Bother?

For some reason I have had a similar conversation with different women on the same topic: why take tamoxifen or aromatase inhibitors after initial breast cancer treatment. Aromatase inhibitors are Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole)

The conversations all boil down to:

  • What if I get side effects? They have heard they are awful and could cause them some real problems. But if you don't even try them how will you know if you will experience the side effects?
  • What exactly do they do? They don't really understand that they would reduce their recurrence risk by being on them
  • Why do I have to be on them so long? It used to be five years and now new research has come out to say ten years is better. And more research is going on that may lead to even longer treatment periods
[As I write this, there is a commercial on TV for Botox for migraines. Botox is botulism, which is a very nasty germ...]

I have had friends who do the same thing with their medications.They over think them and won't take them because they have heard that the side effects might be bad. Or the withdrawal from the drug could be bad. 

You won't know if you might get side effects if you don't try the medication. And you won't get the potential benefit from the medication if you don't take it. How is your doctor supposed to treat you if you won't even try their recommended medication?

Tuesday, March 7, 2017

Once Again I Wasn't The Patient

And it was nice. I went to visit my brother for the weekend. And didn't really see him. He had a kidney stone (and a lot nastier word to describe it) that caused him intense pain.

I did get to go to Lowes with him to get parts of his upstairs sink. I also ran and emptied his dishwasher twice. Drove his children all over the place and visited him in the hospital. I fed his cat several times. I walked his girlfriend's dog a bunch of times - including in a snowstorm. I let the dog hog the bed one night and then I let the cat snuggle the next nights. I had dinner with his ex-wife and two of the children one night. I also drove 7 hours to see him and then 7 hours home.

However it was fun. I am glad I went. But because I didn't see him much, I will go back out and visit him later this spring.

Honestly it was nice that I wasn't the patient for once. I feel like I am always at doctors or hospitals. (Today I have my 15th doctor appointment of 2017.)  But it was a long drive.  I find it very different for me not to be the patient - the one the doctor wants to talk to. They couldn't care less about me and I like that part. There are no questions about my numerable ailments, pain levels, or anything. I can be part of the furniture. I think I need less time with medical people.

Friday, March 3, 2017

What An Oncologist Should Not Say to a Cancer Patient

We hear all about good doctors and not so good ones. But every so often we hear about the one's you really do not want.

Yesterday someone told me about the recent visit to her oncologist for her breast cancer treatment. She brought her sister with her for moral support and to help her out. I think she said her sister asked the oncologist something about that after chemo the tumors would be gone. And the oncologist replied with 'unless there are any other tumors'. I don't remember the exact words but the point is NEVER say that to a cancer patient.

Seriously, what was she (the doctor) thinking? You want your oncologist to be full of reassurances that after this nasty brutal treatment you endured that the chances are pretty good that you are on your road to recovery. Yes, we know that you can get more tumors at any time. Just because you are treated you are not out of the woods (ever). If that was my oncologist I would be shopping for someone else.

So if your oncologist says anything like this, run, don't walk, away and find a new one. Clearly that doctor doesn't quite get it.