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.

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.

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.

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.

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?

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.

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.