Sunday, August 31, 2014

Back to reality

While we are back from vacation, I am trying to stretch out the relaxed feeling for a few more days - until I go back to work Tuesday morning.

What is reality?
  • Getting on top of my list of doctor appointments.
  • Refilling prescriptions needed
  • Return library books
  • Catching up with friends
  • Laundry
  • Grocery store
  • Unpacking
  • Take care of outstanding volunteer work for two organizations.
  • Making the cat understand we did not leave him FOREVER and are BACK for a long time.
  • Taking the car for a very overdue oil change (don't tell my husband) 
  • Planning for a visit from college friends from out of town.
  • Thinking about upcoming medical adventures (yuck)
  • Planning for my upcoming fall schedule of craft shows
  • Making all my items to sell at the craft fairs
  • Planning for our next trip out of town (family vacation)
Never mind taking care of my husband and my cat....

Its starting to come together. I am ignoring the weeds in the garden for now as well.

Sigh. I like vacation better than reality.

Friday, August 29, 2014

My hyper-focused life.

My life,and my blog, seem to be hyper-focused on breast cancer. Yes I acknowledge in my (Breast Cancer) blog that I have other ailments but I have never changed the focus of my blog even though I have questioned it. I still blog about breast cancer because it is part of my life. And I write about changing the focus of my blog but haven't.

However, I read this morning there is another disease which is more prevalent than the one-in-eight statistic for breast cancer that is tossed around. It is Alzheimer's. And the writer makes a valid point that breast cancer is full of ribbons and magazine articles on it, Alzheimer's is not.

When I first saw the article title I thought she would be writing about heart disease and felt a little pang of reminder that while two cancer diagnoses don't necessarily keep me as a potential member of the centenarian club, I do have obligations to keep other parts of my body in good shape. It never crossed my mind that Alzheimer's was that prevalent. And its just a nasty way to go.

With that said, my life should not be focused on breast cancer or living with whining about my ever present ailments. I also need to expand my tiny horizons and think about staying healthy to prevent additional, nastier ailments.

A cancer diagnosis kind of makes you take a second thought on long term planning - why am I saving for retirement at this point???? Taking care of myself and thinking about other ailments is probably just as important.

Thursday, August 28, 2014

Year round pinkification

Estee Lauder is going to new lengths to create year round pinkificaiton. In October 2014, they will offer story telling videos of four families facing breast cancer. They made sure to include young and old, Asian and African Americans so it can't be deemed racist, sexist, or ageist.

They have two good reasons for running the campaign year round. The first is that with breast cancer its a year round diagnosis, not just one month of the year. That is clearly been a complaint for decades. But the other is their multimillion dollar campaign won't fit into one month. I am sure they could have made it fit into one month but it doesn't really impress me yet.

There will be personal touches through the storytelling....

"The company plans to add a personal touch through storytelling, via documentary-style online videos featuring four real-life families affected by the disease. Viewers are also encouraged to upload their own videos and stories, which may be featured on the site in the future."
Will that include the hairless body and rushing to the bathroom. And maybe they will get extra Estee Lauder makeup to cover the chemo pallor.

"Some of the donations will also come straight from the company's own pocket.  The Breast Cancer Research Foundation will receive portions of sales from 15 "Pink Ribbon" products with brand names like Aveda, Bobbi Brown, Clinique, La Mer, Origins, and Estée Lauder itself. Furthermore, the retailer will donate one dollar for each uplifting photo shared on one of their social media platforms (with a cap at $22,000)."

And the truth comes out in two little statements. first of all the BRCF will receive portions from the sale of 15 products? And how much would that portion be? A tiny $0.50 on a $50 product? That is one issue here. The second statement is the $22,000 cap on the photos shared. Does that mean they will only donate up to $22K for all the pictures shared or $22K for each of the pictures shared?

"While Estée Lauder had been planning to focus heavily on Internet platforms for some time, the recent success of the ALS Association’s Ice-Bucket Challenge proved the effectiveness of online activism, with nearly $80 million raised in one month, compared to $2.5 million last year."

Well goody for them. They are using social media and internet platforms and want to tap into the online activism as with the Ice Bucket Challenge. Sorry. I doubt it. The ice bucket challenge worked because it was a single guy who started it, not a corporation and it was a nice hot summer time where a bucket of ice isn't so bad. January would be bad. Its very difficult to create an online viral success. the best ones are teh spontaneous ones that cross borders, touch a nerve with people, and have a sensne of humor and one-up-manship (I triple dog dare you to dump a bucket of ice water on your head). 

I'm sorry a pink ribboned product isn't going to make me do much of anything. And some ad agency must be raking in big bucks for all of this.

Wednesday, August 27, 2014

I'm not that standardized

Here's a new proposal. Give surgeon's a black box to help prevent medical errors, like they have in air planes.

The proposal:

"Inside the operating room, video cameras track every movement. Outside, a small computer-like device analyzes the recordings, identifying when mistakes are made and providing instant feedback to surgeons as they operate.

This is the dream of the surgical "black box." Operations could become flawless. Post-operative complications could be significantly reduced. Surgeons could review the footage to improve their technique and prep for the next big case."

The goal is so a surgeon learns of a mistake when it can be corrected and not after the fact. They get a computer assist. And more significantly they could be adopted in the US without FDA approval as they are not a device or anything.

I'm not saying that I am against improving medical errors or anything. I have myself dealt with a few mishaps in the OR but I do not think the human body is standard enough for this. Each human is unique. That's it. We are all one of a kind.

If someone wants to operate on me, I have many issues - from lack of thyroid, previous surgeries which have left scars, and more. I know they can be programmed into a computer before hand but still.  An individual human being is needed who can interpret the information and unique qualities of the body they have opened up in front of them.

I think of it this way. You are going to a strange place and you program the address into your GPS and start on your merry way. But then the GPS sends you to a road which has a detour and it recalculates around it, so you keep going. It even tells you when you are speeding to give you additional information and recalculates your arrival time. Then it forgets to tell you that the off ramp is on the left and not the right. And then there is an accident ahead so you try to get off the highway and make another detour. And then your GPS sends you down a one way street in the wrong direction.

You needed a human there to guide you to read the signs and notice the detour ahead. Or to tell you about a new problem the patient is having.

A friend had a bad colonscopy and had to have a colectomy. The surgery took much longer than expected because the doctor who removed the polyp at the colonscopy did not note correctly where it was that it happened so the surgeon had to spend quite a bit of time looking for the exact spot. What would that little black box do then? React like the robot in "Lost in Space"? 'Danger, Will Robinson, danger!' That wouldn't exactly prevent much of anything.

There is research going on with these currently in Canada with plans to test them in Canada, Denmark and South America.

But I am really not ready for them to be used on me anytime soon. I would rather have a better trained surgeon than a computer assisted surgeon operating on me.

Monday, August 25, 2014

Can you cure ALS with a bucket of ice water over your head?

Is it the same as putting a pink ribbon on breast cancer? Don't get me wrong here, I think the ice bucket challenge is raising awareness of a horrible disease and it is increasing donations to a worthy organization (unless you are Catholic and have a problem with the stem cell research they advocate). Before you grab your big bucket of ice water and are thankful this challenge is going around in August and not in January, please take a moment to think.

Is what the ice bucket challenge is doing for ALS more than what a pink ribbon does for breast cancer? Seriously.

For everyone who wore a pink ribbon or did the ice bucket challenge can you please tell me three specifications on each disease? Statistics, or life expectancy, or number of people living with it? What does ALS stand for - spell it and pronounce it without looking it up?

While awareness is great and donations are even better, we all need to step out of our little bubbles and learn about these horrible diseases - and there are many more - and what else can be done besides painting the world pink or pouring ice water on your head.

And is this just a passing fad? Or will it be an annual event every summer where the world pours ice water on their head to make a horrible disease look easy and then everyone dries off before pulling out the pink stuff?

Sunday, August 24, 2014

Challenging myself


As you amass ailments, you start crossing things out from the list of things you used to enjoy but no longer. I have a very long list of things I used to enjoy and can't any more. I used to kayak. I liked to kayak. I stopped kayaking when my back starting going bad. Then rheumatoid arthritis complicated things a bit more. Combined with lingering tennis elbow in my right arm. I often wear a wrist splint on my right hand as well to reduce the pain in my left elbow and wrist.

Then we came to Cape Cod on vacation with my family. My brother said he was bring kayaks - one hard shell and a couple inflatable ones. In my mind, inflatable kayaks are like any other inflatable boat - you don't really have to worry about ramming into anything because you will bounce off. But they are impossible to steer - like trying to paddle a balloon. You get my drift (okay that was a bad pun) that I am not interested in paddling an inflatable boat. I figured my brother and his four children would be happy with those kayaks and I would stay away.

But then it turns out two of the four children don't like to kayak much. One of the two remaining children who like to kayak also likes to sleep late. Leaving one child who might want to kayak but temper tantrums are not invited.

The other morning, my brother, husband, and I set off on a morning kayak. I wasn't sure how far I could go and how my arm would feel - as well as my back and shoulders and other body parts - but I  just went. My brother was so confident of my abilities he brought a long bungee cord so he could tow me back if necessary. My husband limited himself to giving me advice not to over do myself.

But we kayaked. I did fine. Getting out of the kayak was another story because I landed on my butt in three inches of warm ocean water - and then I had to stand up from the ground. But I was wearing my bathing suit. I did need a nap but didn't feel horrible amounts of pain during or after kayaking.

Yesterday morning, my brother and I were up early and decided to go kayaking again. We were discussing the complete lack of wind and how calm the water was.... Until we put the kayaks in. Then the wind immediately blew up and the tide was running hard out. We chose to paddle slightly downwind across the channel so we could paddle along the leeward side of the island. Finally I needed to stop and turn back - my shoulder and arm were telling me it was time.

We paddled back along the sheltered side annoying the birds until we got to the channel Then the fun began. We set up our plan. My brother offered to tow me. I said he could go behind me in case I ran into problems. It was a hard paddle diagonally across the tide current and the wind, but I made it.

In thinking about it, I really did challenge myself to try something I haven't thought I could do for several years. I am not sure I am up to kayaking again this morning because I can still feel it in my arm. But I did it successfully. I didn't have to hop in and swim for shore or get towed in and I didn't cause excessive amounts of pain.

I'm happy. That was a big personal success.

I think as a long term patient, I have let myself get in to the realm of being a patient where I find it easiest to say no I cant instead of challenging myself to see if I still can.

Friday, August 22, 2014

Why do I do what I do?

I'm not talking about cancer, I'm talking about volunteer stuff. I never used to volunteer. I mean rarely did I volunteer. I was too busy having a life, or trying to at least. Ten years ago, I got bit by the volunteer bug and now I seem to fill my life with volunteering.

In the past ten  years I have: been on the board of the friends organization for the town library, volunteered at Komen events, volunteered with Relay for Life, volunteered at the local cancer support organization, worked at the annual conference for NEDMA, help the Cystic Fibrosis Foundation with their website for their annual fundraiser, briefly helped with the local chapter of the American Diabetes Association and one of their annual events, helped NECCS with their annual luncheon and fundraiser, and volunteer with Casting for Recovery. There's more but I can't remember.

So why do I do all this? Because it makes me feel good. I don't do more than I should. For example when I help CFF, they send me an email and say can you please update our website with this information. Or I helped NECCS with their vendor round up. I could do it from home and not have to leave the house.

I help several causes. Many are cancer related but not all. I have decided that is not as important as I previously thought.

But before 2004, I never volunteered. Especially for cancer stuff. I didn't want to be as open about my medical stuff than I had to be.

But now I wonder why I didn't. I volunteer with people and I have no idea if they had the ailment or not. Nor do I care. Because that's not the important part of volunteering. The important part is getting that warm feeling from helping others and see a smile on people's faces when they experience it.

And I can show them how I got through cancer treatment and there is life on the other side. But then I have to admit I had cancer too - and that's part of my healing process too.

Thursday, August 21, 2014

Research turns theories upside down

I read Dr Susan Love's blog - she writes well and she knows her stuff - and I have heard her speak so I feel a connection. Recently she posted about some interesting new research which has some wide implications. While the research itself sounds interesting, I am more interested in Dr Love's comments about the research.

She makes the point:

"Two new papers have been published which are causing many to reevaluate their thinking about cancers and which cells are important.  Once again, our previous theories have been stood on their heads!"

So what was believed was wrong. We need to remember that. As research progresses and we learn more and more about things, we often find we were completely wrong. (The world used to be flat, wasn't it?)

We have to remember that when new research proves other research wrong, it doesn't mean it was anyone's fault. We didn't know there were options. We didn't have the technology to know then what we know now. Sometimes we have the tendency to say 'If I had that treatment, I would be so much better off.' But we can't beat ourselves up for that.

On the flip side, we have to remember as we learn more and more about cancer, those pesky five year statistics tables are based on old technology so they are outdated. And we can assume, rightly so, that our odds are better than those stupid tables.

And more research may disprove the latest breakthroughs in the future but we are doing as best we can in the interim. Meanwhile, back at the ranch, I am still waiting for that cure for cancer that Star Trek says they discovered in the 21st century.

Tuesday, August 19, 2014

Life with chronic pain

I was very intrigued to read this article on a man's advice on living with a wife in chronic pain. I admit I might be guilty of some of the first ten myself. My husband does pick up on when I am overdoing things and cues me to take it easier.

I also know sometimes when I want to do things and feel like I should do them but just don't have it in me. I try to work around it. I'll lie down for a while and then try later on. Or I'll put it off until the next day. Sometimes I ask my husband to do things for me - like making dinner - because the idea of standing in the kitchen for ten minutes just isn't a good idea.

If you read his list, you will get a better idea of what  life with chronic pain is like. And its all relative. His wife had a C-section without anesthesia (eek!) and that's her high pain point. My high pain point was probably when I tried to stand on my blown out knee on the side of a ski slope. Or when I had my drain pulled out. Or... I don't know. Those were all very painful moments and there are others.

For me when my back hurts so much I can't stand up, I call it a 7. Right now, sitting in bed after a good night's sleep it might be a 4. But I'm not telling my husband so we can play mini golf and go for a walk. I'll sit in the car and let him drive as we go off to have fun. But I'll also take my bottle of pain meds with me just in case it gets a little farther up the pain scale.

.

Monday, August 18, 2014

Insurer bias - or why insure (expensive) sick people?

One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.

Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.

For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.

I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.

Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.

Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.

And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.

To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.

Each year  you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?

I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.

Sunday, August 17, 2014

Double mastectomy or not?

The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.

Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.


"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.

According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.

For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."

So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.

Saturday, August 16, 2014

Why do they do that?

I have a policy with myself for when to call my back pain doctor. When I get to the point of needing 2-3 breakthrough pain pills to get through the day, its time to make the call for an appointment. I have been at that point for a while and got in to see him yesterday afternoon.

My points of discussion with him were two: My right SI joint is in serious need of having its nerves killed off and my varying total back pain needs to be discussed. We don't always change my pain meds at a single appointment, we often discuss them over a few appointments before making changes.

My right SI joint (which is the long seam joint down the side of your tailbone if you are wondering) has been giving me problems for months. We have had the treatment discussion before but previously we have focused on other pain areas.

Yesterday afternoon, he  had me lie on the exam table and he moved my legs around and pressed on my hip. That hurt. Then he had me lie on my side and he pressed right on the SI joint. That was like a live wire running through me. I had to catch my breath after.

I think he realized how much it hurt and said he would send the nurse in to schedule my treatment. It took a while for me to recover from the amount of pain. I know he had to make sure he knew where the pain was coming from before heated needles to kill the nerves - because you really don't want to kill the wrong nerves.... But, yowza!

October 25 is the date for the treatment... It will be three years from the last one, which was the second one on the same place. These treatments (radiofrequency) can be repeated over and over again and each time the nerves come back, it takes longer and longer and they are weaker and weaker so the pain levels are less and less.

On a side note, my pain management doctor says I can actually take up to 8 break through pain pills a day and he considers 2-3 a day a very low dose. But my rheumatologist tells me that from her point of view, 3 should be the maximum because of convulsions. Its the different perspective from the two doctors that gets damn confusing.

Friday, August 15, 2014

What to do about my boring blog?

My blog has devolved into something just plain boring, for lack of a better word. I will say I do not write for volume, I do not write for search engines or to build twitter followers or anything like that. I blog because it helps me cope with my devolving health. I do try to primarily write about breast cancer and related issues.

But my life has not been about breast cancer recently. Which is a good thing. I do not focus my life on breast cancer now. My life focuses on work, getting ready for craft fairs this fall, and coping with my back and RA issues as well as fibromyalgia pain.I have also upped my volunteer work to a level which is fulfilling.

I think I have gotten through enough of the breast cancer PTSD for now. It will never go away. I do know that. This month marks 33 years since my thyroid cancer diagnosis and that never completely went away.... (The answer to the question of does it ever go away is no.) But it does recede into your mind and make it easier to cope and live.  And allows room in my brain to focus on the rest of my life. And no there is no new me living a new normal. That is all a load of crapola.

So that is where my brain is so that is why my blog is boring. I will continue to blog and I will try to make it less boring.

Thursday, August 14, 2014

A day off

Today I have given myself a day off. Actually, don't tell anyone, but I have a cold. Well its not really a 'cold'. I just don't feel well, run down, tired, but no congestion. And I have been fighting it since Monday night.

Due to being Mrs CIS (Compromised Immune System), I don't bounce back from little germs like I used to. Actually I don't bounce at all...

I just plan on being better for vacation which starts Sunday (and to all you burglars, we have a house sitter). I can't be sick on vacation. That's a rule. I might also not blog very much while we are gone...

But I must be healthy while we are away..

Anyway, I also be home this afternoon while I get a new windshield for the new car. A big crack appeared while I was stuck in traffic Tuesday afternoon. They get a five hour window from 12-5.... I'll be home with my germs. But at least I have a good excuse for sitting around all afternoon.

Cancer people should get an exemption from all the regular crap in life....


Wednesday, August 13, 2014

When diagnosed with cancer, get a puppy

I read a really good book last night. The whole thing. 83 pages in a 5"x 8" book so its a very quick read. 'Survival Lessons' by Alice Hoffman. Yes the famous writer Alice Hoffman.

She had breast cancer 15 years before she wrote the book which came out last year. In the introduction she tells us it is her personal path to healing on her own terms. The book then shares what she learned during the course of her treatment, looking back after all that time. I hope I am as smart then as she is now.

In addition to telling us to get a puppy during treatment, she is full of good advice including 'choose to plan ahead' and 'choose to dream'. These are two very important things we often forget when coping with a cancer diagnosis.

It made me think in a good way. I will return it to the library shortly so others can benefit from it. I might reread it before I return it and I will definitely reread it again in the future.

Tuesday, August 12, 2014

Its a sad day

Robin Williams died from an apparent suicide yesterday. But I smiled after reading some of his most famous quotes. Here are some of my  favorites:

"Goooooooood morning Vietnam! It's 0600 hours. What does the 'O' stand for? O my God, it's early!" - Adrian Cronauer, Good Morning Vietnam (1987)

[Mork picks up an egg] "Hello? Hello? Anybody in there? Little hatchling brothers, you must revolt against your oppressors. You have nothing to lose but your shells."

"You're only given one little spark of madness. You mustn't lose it."

You can read the rest here.

But the sad thing is that he committed suicide after dealing with depression. I too have depression issues as do millions of other Americans. But no one wants to talk about it. Its one of those diseases, like hemorrhoids, which are embarrassing. The problem with embarrassing ailments is people don't want to talk about them. So they do not communicate them to anyone, even a doctor, which can endanger their health.

My depression got worse with my second cancer diagnosis but I probably had it for years before. But damn it, cancer is depressing. And coping with it, for a second time, isn't easy. Treatment was the answer.

I don't know more about Robin Williams' depression story and only know what I hear on the news. His humor always had a bit of an edge. But he did make us all laugh as we listened to him. It is very sad that he is now gone.

"Crying on the inside, laughing on the outside."



Monday, August 11, 2014

A new understanding of cancer

I read both these articles recently and sort of jumbled them around in my brain and thought about them. They make a lot of sense. There is current medical research which is focusing on a new cancer classification system based on their genetic make up and not on which part of the body they are found.

Think about it. We may call it a head cold or the stomach flu, right? But we know they are different and treat them differently. With cancer, its the same thing. Breast cancer and stomach cancer get different treatments - but they are chemotherapy, surgery, and radiation - which are fairly similar. And then doctors wonder why some patient's cancers do not respond to treatment the way other patient's cancers do.

But their genetic make up may very well be the key here.

"In the triple-negative breast tumors, named as such because they lack the three hormone receptors targeted by the most successful therapies, the researchers learned the molecular wiring looked so different from any other breast cancers that they think the disease may warrant a new classification."

There is lots more you can read about this here.

Then Providence Health & Services, which provides care to those in need in the northwestern US, has released a plan to sequence the DNA of cancers - another state of the art leap in cancer diagnosis and treatment.

I call this all progress, in  a good way.

Sunday, August 10, 2014

I didn't blog today

This isn't a real blog post. It is an unpost to say I am not dead or anything but we had house guests, I didn't get enough sleep either Friday or Saturday night, and I am tired. So I am not blogging. Pretend I am writing in invisible ink. I should be back tomorrow.

Saturday, August 9, 2014

Chronic can be a good thing

When I was in cancer treatment, I was told cancer was being treated as a chronic illness instead of a terminal one. We all liked that. It was nice knowing that they didn't expect you to die anytime soon.

Living with a terminal disease is not fun. Your life is counted in weeks and months instead of decades and generations. But living with a chronic disease is not that great either.

We all know we came with an expiration date - life is a terminal occurrence. We are all going to die some day. But with a chronic disease, life just becomes a little (or a lot) less fun.

I have a couple of those chronic conditions that make life less fun. And that's how life goes for me. If you want to learn more about living with chronic ailments, this is a wonderful essay on life with chronic ailments.

And how you wake up each day with hope to be free of pain and and maybe there will be a cure. 

Life with chronic ailments is better than with a terminal one but how much is up for discussion.

Friday, August 8, 2014

Happiness

What is happiness in life? We don't realy know. Scientists have defined it as:


My version of it is a bit different (and I have long since forgotten all the calculus, trigonometry and higher math I learned in college) and shorter.

I think happiness is defined as contentment, meeting your own expectations and no one else's. In the scientific definition they talk about it as meeting your expectations of yourself. But do not lower your expectations. You need to set your expectations to a level that you can attain. Wow, am I getting philosophical this morning? That is too much to ask.

But I digress. What makes me happy? Well, as you may have guessed my health doesn't make me happy. Happiness for me is getting a feeling of accomplishment in what I do. Sometimes it leads me to stretch myself a bit thin with volunteer work but I like how I feel after I get something done that helps another group of people.

Sometimes I see people who clearly are not happy with their lives. Some times circumstances can be beyond our control - like getting cancer, and sometimes we need help from others - money, therapy, but we are better off if we focus on making lemonade out of our lemons than allow resentment to grow and turn us into crabby nasty people.

What are my expectations in my life? I now know I am not going to be a rocket scientist, a CEO, a Hollywood star, or cure the common cold. But I am  okay with all that. I wouldn't mind finding a cure for cancer but think there are others who are much more qualified.

What do I want out of life? I think I am happy with a little house on a little street where I can live quietly with my husband and garden. I think I am happy in our own little world here. Its only 10 minutes to the damn hospital if I need it.

Thursday, August 7, 2014

Say hello to our new pal - PALB2

PALB2, or PAL for short, is our new friend. She's a newly discovered breast cancer gene who hangs out closest to our old friend BRCA2, or B2. She also hangs with B1 but not as much. But what does PAL do? According to some new research:

"Overall, the researchers found, a PALB2 mutation carrier had a 35 percent chance of developing cancer by age 70. By comparison, women with BRCA1 mutations have a 50 to 70 percent chance of developing breast cancer by that age, and those with BRCA2 have a 40 to 60 percent chance..."

"The breast cancer risk for women younger than 40 with PALB2 mutation was eight to nine times higher than that of the general population. The risk was six to eight times higher among women ages 40 to 60 with these mutations, and five times as high among women older than 60...

"The data also indicated that women with the PALB2 mutations were slightly more likely to have “triple-negative” breast cancer — a form resistant to hormone treatment, more aggressive, and more likely to recur than other subtypes...."
A caution was added:

"“This has to be tailored to the patients, who may have other mutations and varying family risk,” she said. “With no family history, the increase they found is 35 percent. If you have two or more family members with cancer, they found a risk of 58 percent.”"

So PAL may be our friend but we don't want her to hang out with our family as well. 

You can learn more about PAL here and here (NEJM) and here (Genetics Home Reference).

Wednesday, August 6, 2014

Blah, blah blah, blah, blah

Ooohhh.... more information on breast cancer risk!!! Hot damn baby, this must have the clues I need!!!

Nope. Not there.

Here they are:

Hereditary: not me

"Being obese, smoking, drinking alcohol, using birth control pills, lack of exercise, early menstruation, and certain benign breast diseases, have all been associated with an increased risk for breast cancer"

I'll take the fifth here. But I wasn't fat until after breast cancer. And I have always been known to get exercise and have never been a fan of the pill.

And then there is something about how estrogen metabolizes in your body and there is a new fancy test for this. The 2/16 alpha-hydroxyestrone ratio which can be measured in a urine test. And you can balance your ratio by eating more plants.

Finally:

"Having one or more risk factors for breast cancer doesn't necessarily mean you’ll develop the disease, but being aware of the risk factors may inspire you to take preventive steps. This could have a huge impact on your health."

So, nothing new here. Its just blah, blah blah, blah, blah.

Maybe I'm in a cynical mood this morning.

Tuesday, August 5, 2014

Appointments can mess up everything!

We are going on vacation in a few weeks and looking forward to it. This is an annual trip that has been planned. (And no I am not giving special insight to burglars as we will have a house/cat sitter while we are gone.) As part of our getting organized for this trip, I have longstanding plans to have tea with the house/cat sitter to discuss details of what is the latest food the cat will eat as well as other general information.

We are supposed to have tea (or possibly champagne and paté) at 3pm.

Yesterday I gave up on my back issues and decided living on Tramadol is not the lifestyle I enjoy, and called my back pain doctor for an appointment. The only available appointment in the next month is at 245 on the same day. Wah!!!

So now I need to reschedule our tea/champagne and paté to later in the afternoon. Obviously I can't drink champagne and then go see the doctor.... I know I could have said no but it would mean more time living on tramadol.

This always happens. We are at the mercy of our doctor's and their schedules. I also know that we are also stuck with scheduling around our other appointments. But damn! I hate it when doctor appointments conflict with the fun parts of my life.

Monday, August 4, 2014

I can't decide

No this isn't about cancer. It does say 'breast cancer blog' but my life isn't all about cancer - which is a good thing.

My problem/decision today is - allergies or a cold. I flew back from DC last week and was exposed to all sorts of people. As I blogged on Saturday, I am not feeling that great. But after sitting on my butt for two days instead of getting exercise and not feeling better, I have decided I need to go to plan B. Ignore it.

I can't decide if its a cold or allergies so I am going to ignore it. I have too much to do this week to be sick so I am going to pretend I am not sick. If I get sicker, maybe I'll do something about it. But right now its a stuffy nose, a sore throat and generally feeling blah. And no, please do not recommend Benadryl or other antihistamines because I am allergic. But thanks for the concern.

I am going to work this morning and then the gym, provided I don't turn into a pumpkin in the meantime....

Sunday, August 3, 2014

Unwanted interrogations

I really despise this. You reveal an ailment and get an interrogation in return. It doesn't matter how well you know the person, you just want to shut them up.

Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.

These questions ensued:

Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).

I am so glad I didn't mention any other ailments.... The questions might never have stopped.

Do I know you? No. Is it any of your business? No. Do you mind shutting up now?

Saturday, August 2, 2014

Immune systems and all that.

I guess I have a crappy immune system.... Or that's what they tell me. Nothing to do with cancer but that pesky chemo crap probably did something to my immune system during treatment. Now I have RA and the methotrexate definitely has messed up my immune system. Someone else's sniffles can make me sick for weeks.

But I usually just ignore my immune system and do what I feel like. Call me a rule breaker if you want.

When I was in chemo, they (the proverbial 'them') said I should avoid crowds and not to go to the mall, movie theaters etc. I didn't go to the mall or movie theaters. But I did work for the local community ed program in the office of a local high school. I am sure there are barely any germs in a high school. Just a few thousand teenagers. I wasn't concerned. I worked with a paranoid germaphobe and let her be concerned for me.

This week I took my immune system compromised body through two airports (twice - there and back again (as Bilbo would say)) and sat in meeting rooms with other immune systems. I was probably exposed to about 10,000 other people, give or take 5,000. And I even rode the subway to minimize exposure.

Now that I am home, I feel tired and my back hurts (that's nothing new there).

I might have a sore throat but I am sure that is just be allergies. I'll may get to the the gym later. In the meantime I am doing many loads of laundry.

Friday, August 1, 2014

I dont travel well any more

I used to travel at the drop of a hat. Skiing for the weekend? No problem. Run off for a weekend hiking in the mountains? Bring it on. Drop everything and head for the beach? Sure. A day in the city followed by dinner out? Let's go!!

Now, can we go off for a day of fun? Only if I get enough sleep first. A weekend away? Let me count out my pills to make sure I am prepared. Is there plenty to do if I need to lie down for a bit (so my husband isn't too bored). Are there wimpy activities if I need to change plans?

I am traveling, by myself, with my newest purchase, a four wheeled suitcase which is much easier on my back. I will be home tonight... I may implode first because I forgot my pills last night. Damn. Triple damn. That's only my anti inflammatories, folic acid, antacid, second lyrica pill, antidepressant, vitamins, and I can't remember what else that my body needs to function.

You say, why can't you take them this morning? Some are twice daily. Some make me fall asleep so I purposely take them at night. And I can't take anything else until its been an hour since I took my thyroid meds. So I am better to suck it up through my morning meetings and take an Ativan later for my flight home.

I can't believe I forgot them as I skipped a group outing to get some sleep. I went down to the hotel bar and had a glass of wine while they made my sandwich which I ate in my room so I could rest.

Finally I am contemplating some sort of revenge for the drunk neighbors who, came in at 1130 and were banging around next door for an hour or so. I need something loud to drop. Hmmm.... my inner evil twin comes out when I don't get enough sleep.

But I should be on my way home this afternoon to my husband, cat, and own bed, with my day by day pillbox on the bedside table. I can't wait.