Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

Welcome to my life outside of cancerland

I do have a life outside of cancerland and being a patient. Actually I do lots of things but one of them is a direct result of having breast cancer. I knit and crochet. It helps pass the time between doctor appointments or waiting for test results.

Back in the fall of 2007, I must have been very whiny because a friend told me I needed a hobby. I started crocheting again. Then knitting. Then everyone in my family got a scarf, maybe even a bad one.Then I started giving them to my friends. Then I amassed a huge pile of scarves.

Somewhere in there a nice woman named, Lorna Miser, contacted me through my blog and wanted to quote me in her upcoming knitting book. She sent me some very nice yarn as a thank you. It's really nice yarn!

This week her book Knit Pink for Comfort, Gratitude, and Charity, showed up, with me quoted on page 43. Maybe my next hobby should be photography.

Last year I went out on a limb and tried having a table at a couple of craft shows. I did okay. I tried a couple more this year.

Now I am signed up for four more craft shows in the next 9 days. call me suicidal if you want. But please come visit me and buy scarves.

Then when I am done with my scarves I can finish the blanket for our bed that I started in July.

Thanks

16 things you didn't know about me

I am jumping on the latest fad band wagon - I have seen several other posts on this so its my turn.

1. I do not like crawly things. I like to garden, I like organic vegetables but they should not have house guests.

2. I am not a cancer survivor. I am a person with cancer or even someone touched by cancer. All I survived is a bunch of doctor appointments (still on going - so maybe I am a work in progress).

3. I do not color my hair. My friends are jealous. Both my siblings have way more gray hair than I (not that I mention it to them much). My hair dresser thinks I have a way to go before being gray. I was gray briefly after chemo but it all came back to the way it was.

4. I cannot parallel park. Some times I have problems with regular parking spaces as well. My husband coaches me or I just leave the car badly parked all the time. We did buy a car a couple of years ago with a tiny turning radius and my husband hoped I would be able to park it but I still cant. (To be fair, when I took my driver's test, oh so many years ago, I hit a trash can while parallel parking but they still passed me.)

5. I believe that everyone has the right to their own opinion but that we just don't have to agree. This means I really don't have time for fear mongerers or hate mongerers.

6. I try to be proactive in taking care of my health issues. I am actually going to a dermatologist later this month for a skin check just because I should. I even go to the dentist and periodontist regularly. Even though I hate the dentist - drills..... eeeekkkk!

7. I like to travel and have traveled to most of the US except some of the western states and Alaska and Hawaii. I have traveled to Canada, England, France, Spain, Japan, and Italy and even went to school in France for a summer term in high school and then a semester in college and a summer term in Spain in high school as well. Next year I want to go to Iceland. Right now I am on vacation up in northern Wisconsin on Lake Superior. In September we are going to Sacramento and Lake Tahoe.

8. I have studied French, Spanish, Italian and Japanese. I don't remember too much of them but
can get by. I was very pleased that I managed to survive in Japan mostly by myself.

9. I love to cook, garden, read, and hanging out with my husband. The best part about cooking is my husband will try anything once and has learned to give his opinion so I make things again that he likes. I rarely follow recipes and measure exactly, sometimes I look at them for guidance and then pour in a little of this and a little of that.

10. I dislike prepared food. I try to follow the rule of no more than five ingredients, no ingredients with words you cant pronounce or eat things your grandmother wouldn't recognize. I do not eat at fast food or chain restaurants unless I can avoid it. I make everything from scratch including soup. I recently learned how to make pasta and bake my own bread.

11. I am addicted to competitive cooking shows - The Next Food Network Star, Top Chef, Chopped, etc. I also watch Jeopardy every night with my husband - and we argue about the clues or the people on the show and what they are wearing.

12. I also like to crochet and knit and am a member of SABLE (Stash Acquired Beyond Life Expectancy) in the yarn category - and added some more awesome yarn yesterday at an yarn store we are going back to today. They had lots of Italian yarns...

13. I used to ski (cross country and down hill), snow shoe, hike, bike, roller blade, ice skate and all sorts of out door sports. Now I am lucky to make it through my daily walk. I do try hiking as long as my husband carries my pack.

14. I am not a late night person. I like to go to bed between 9 and 10 - and have always been this way with the exception of college where I would stay up late - till 2 or later. This is not just because of my stupid health issues. I am a morning person. I like to watch the sunrise - we can see it from our bedroom window.

15. I was 4'8" in fifth grade. For some reason I remember that height. I am now a whopping 5'3.5". I used to be the shortest person in generations in my family. One of my great grandmothers was six feet tall.

16. And finally, I am an internet junkie (as my friend is telling me). I blog. I am on Facebook. I am on Twitter. I update websites as part of my work. I have a certificate in Internet Systems Management. So maybe I am a geek. No not just a geek, I am a COOL geek. (Is that possible?)