Breast Cancer the Socially Acceptable Cancer

A breast cancer diagnosis is no fun. Actually any cancer diagnosis is no fun. We all know that. But maybe because of all the 'awareness', it is now more socially acceptable than other forms of cancer. Isn't that just weird? I think so.

Meanwhile, a woman in New Zealand was diagnosed with stage IV lung cancer and she wonders if breast cancer would be better because of the stigma surrounding smoking and lung cancer.

I think lung cancer is the only cancer which is regarded as 'self inflicted'.  Face it, as normal human beings we associate lung cancer with smoking. But not all smokers get lung cancer and not all lung cancer patients were smokers. I think we look at lung cancer patients, even us former smokers, as people who have done it to themselves. They smoked and they got the lung cancer they 'deserved'.

The problem then is with the original cancer stigma, all cancer patients can feel isolated and alone. Which is no fun. But lung cancer with its added stigma makes it even worse. How to find the best support when you don't have the 'in' cancer?

First of all breast cancer patients seem to be all around us but lung cancer patients are fewer and harder to find. Then its got this additional stigma. I think all cancers should be equally treated with the same resources available for all.

One Last Story on How Life Sucks After Breast Cancer

Okay, maybe I have been in a rut because I have been stuck at home after knee surgery because I can't drive. Or maybe because I have a cold that I am obsessing on crappy lives after cancer. Or maybe the internet gods had their stars align and all these stories ended up on my laptop in the same time period. But I hope this will be the last one for a while.

Here's the story of a young woman who lost both her husband and her sister because of her lengthy cancer treatment.

"“The reality is that probably four out of seven days I’m in bed,” explains the 39-year-old, who lives with her mother at Bundall.

“I’ve had my left hip replaced. My right hip is headed the same way. The pain is excruciating and I’m on some heavy duty pain relief. My lungs have been affected. I had my gall bladder removed last year. I’ve developed cataracts."

Kate Carlyle is a former radio personality from Brisbane Australia. In the past eight years she has gone through two breast cancer diagnoses and a leukemia diagnosis which required a bone marrow transplant. The bone marrow transplant is what cost her a sister - her sister could donate but became pregnant and couldn't donate at the last minute - causing a long term rift which continues today. She was saved by an anonymous European donor.

The stress of her cancer roller coaster cost her her husband. She is not the first to lose a spouse over the stress of cancer diagnosis. But it just makes things suckier. During cancer treatment is you are not at your best to deal with marital issues.

So yes, life after cancer can be very sucky. They don't tell you all this. Yes you can get divorced or have a long term rift with a sibling without involving cancer treatment. But when you are coping with a significant health issue you don't need the other crap.

So as Kate says in the end: "“I love being alive and if that means I have to battle through at times, so be it.”"

Being alive is the most important thing. It is the goal of any cancer treatment - to still be here for all the little things in life - birthdays, anniversaries, marriages, friends, family, change of seasons, butterflies,...

More on Life After Breast Cancer

Beth Caldwell is another story about life after breast cancer. But the really sad kind. She was diagnosed with breast cancer at age 37, which is three years before she would have gotten a mammogram. Unfortunately she had a huge factor going against her with her diagnosis. She was diagnosed at stage IV.

This is a very bad thing. This is not the good painted pink breast cancer. This is the really bad kind. This is the cancer that something like 7% (or so, I can't remember the exact number) diagnosis that women (and men) face.

When you are diagnosed at stage IV, you are already past the point where everyone else is at and where everyone else is trying not to get to. Their treatment is trying to keep them from getting to Stage IV. Beth didn't have that luck.

Now Beth is gone. She passed away on All Souls Day, November 2, 2017, 3.5 years after diagnosis. That is a very short time. If I can do math, she was just over 40 years old. She left a husband and two children.

Before her diagnosis she was an attorney. She left her work and became a mom and a cancer patient. That's a sucky life. The cancer patient part. Not the mom part.

I don't claim to know Beth. I have read her blog a few times.... but not every update, but most of them. But I feel for her. I can relate.

So there can be millions of women with pink boas walking and running their events who say they are lucky to be 'survivors'. But the sad side of breast cancer is people like Beth. She didn't make it more than a few years.

You ask how breast cancer sucks? This is the ultimate suck. I hate breast cancer.

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.

I Don't Do Pink Things Except....

I don't do pink things. I detest things where if you had breast cancer you are supposed to cover yourself in pink, including a few boas, etc. I don't participate in them at all.

However, I have some breast cancer friends who started out with me on the Komen message boards back in 2007. When they screwed up the message boards, we all left and moved to Facebook where we have remained friends. A bunch of them in the Midwest started what they called BreastFest at a park in northern Indiana, near where some of them live.

Overtime, this has expanded to be an all day event at a local hotel. Last year I went on a road trip with a friend to go meet them all. They all wore pink because they ordered the t-shirt for last year. I didn't. I wore a green t-shirt. I didn't buy a t-shirt because I didn't want one. I wish I had. I was going to order one this year. But we didn't get to go.

My compatriot who did the driving and provided the car, is having the floors redone in her house so it didn't work for her. She didn't want to reschedule because it took long enough to talk her husband into the change in the first place. And I ended up having my knee surgery.

But I am going to miss them. Today they are meeting and will drink wine and eat 'healthy' food all day. Then it will be nap time before a big dinner. And they will play games - where I haven't laughed as hard as I did since. And generally have fun.

I would wear pink for this group. Its a wonderful group of women. I will definitely go next year. Its too far for me to drive myself so I need my compatriot. Its a pain in the ass to fly to because its 3 hours from any airport and I don't fly well anyway. And I would need to commit to being healthy enough to travel if I paid for plane tickets - this is why we drove last year because if we weren't healthy we could bail and not lose money. We stayed at my brother's house on the way out and the way back so other than gas money, we had no real expenses.

Anyway, I will miss the ladies this year and will wear pink for them next year when I am there.

Dumb Things Cancer People Hear

I know I am supposed to be away but this one resonates... Some people are just plain stupid. Read it here.

Hanging Out with My Peeps

If I take a look backward, I realize that I have the best time hanging out with my cancer friends, or 'my peeps'. Sometimes I feel like I hold back on my health with everyone and more so with people who don't have cancer - a/k/a the people who don't really get it. I mean they try.

I have many friends with varying understanding of what its like to live with cancer. One friend, who has RA and has lost a husband to cancer, is very, very close to understanding the life I live. Then I also have friends who barely know what fibromyalgia is.

Part of it is me. I tend to not be very open about my medical stuff until I am ready to talk about it. The first person I tell is my husband when it comes to medical crap. Then I start telling my family and my cancer friends. My family comes next because they are my family. Then my cancer friends get it.

Every week I go to my knitting group at a cancer support center. We all have cancer in varying states of treatment and health status. We have not known each other too long. Sometimes it takes a week or two for people to open up about their cancer. But we sit there and laugh about life.  We really have a lot of fun. And there is always a little sigh when our time comes to an end and we head our different ways.

I also find that I spend most of time with other friends with cancer. First of all, they are most like to be retired like me and have time during the day (I don't go out at night). Second, we can all relate to our health issues.

So I like hanging out with my peeps and having fun. No offense to everyone else but they are my peeps.

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.

Coping With Breast Cancer with Friends

After living with breast cancer for nearly 10 years, I have some thoughts about how we all cope with it. I know personally I have gone from total, sheer panic to somewhat calm acceptance with a large dose of humor.

Humor has always been my 'go-to' when coping with anything. If I am not cracking jokes, I am really stressed. I mean I sometimes crack really bad jokes when stressed but if I get to the point where I am too stressed, my sense of humor vanishes. That means trouble.

I have noticed that most of my cancer friends do the same thing. We all have kept our sense of humor as we cope with life with breast cancer. We have all coped differently and faced our demons separately but we all have learned to laugh together.

Yes, our demons have been very bad at times. We have lost some friends along the way but our humor keeps us coping.

Living with breast cancer has tested us in many ways and, as each of us are unique, we have bonded together and our bonds allowed is to cope even better. I cannot imagine going through breast cancer without my friends.

News I Didn't Want To Hear or Dumb A$$ Cancer Cells

This isn't political news but it is really news that I didn't want to hear. Tamoxifen and AIs (Aromatase Inhibitors - Femara, Aromasin, etc) work by cutting off the supply of estrogen which feeds cancer cells. However the new research (because we need new research forever) shows that cancer cells can evolve to develop their own food supply if it is cut off by the treatment.

"Approximately 70% of breast cancers are estrogen receptor positive which means they feed on the hormone estrogen. Breast cancer drugs such as tamoxifen and the aromatase inhibitors work by limiting access to estrogen thereby starving the cancer. Research published yesterday in the journal Nature Genetics indicates that some breast cancers treated with aromatase inhibitors evolve to produce their own supply of estrogen rendering the drug treatment therapy ineffective."
I didn't want to know that. What it means that while I am taking Femara, the dumb ass cancer cells could be finding their new food supply.

After my breast cancer diagnosis, chemotherapy and radiation, I was put on Tamoxifen for two and one half years and then switched to Femara. In 2015, I had hit the five years on Femara and was, after some discussion, taken off it by my oncologist.

We talked about several issues with this including the potential benefit of staying on it even though it wasn't proven yet. But because of my issues with pain, we decided it might be better if I went off it. The thought was that sometimes Femara causes problems with joint pain and since I have so many issues with pain, who knew maybe it would help.

In 2016, last summer, there was new research which said staying on it for ten years was better than five. And I hadn't noticed any less pain with it. So I went back on it.

Now this new research makes me feel 'unsafe'. That is not good thing for a cancer person to feel 'unsafe'. Cancer people want to feel safe. They want to feel that their treatment is protecting them as much as it can. Why take it if it doesn't protect you? If the dumb ass cancer cells want to evolve and go around the treatment, why am I taking it?

Thank you for this research. Not really.

Facing Anniversaries

So I was diagnosed with breast cancer at the end of May 2007 which means I am almost at my ten year mark. When I was diagnosed I hopped online for a lot of emotional support where I met a bunch of great people who really helped me learn, cope and adapt to this new phase in my life.

I got online immediately (probably within a week of my diagnosis) and met so many people who were already through most of treatment and were diagnoses up to a year or two before me. Now I am still in touch with them and watch them celebrate ten years out from their breast cancer diagnosis. I am happy for them but I am not sure how I feel about me.

Honestly I just cant see myself wanting to celebrate ten years since my breast cancer diagnosis. I don't think I have it in me.

When I was diagnosed with thyroid cancer in 1981 at 19 I always told myself I would throw a party and finally talk about it with everyone when I was 20 years out. That didn't happen. So I said at 25 years out. That didn't happen either. Then I was diagnosed with breast cancer, my health fell apart and I am not in the mood for celebrating anything.

I mean I appreciate that I am still here but not so sure I need to throw a party or celebrate in anyway.

Peer Support

When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.

I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.

Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.

I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.

I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.

The Idiots At the TSA in LAX

Did you hear the story about the woman who was basically groped and abused by the TSA at LAX? Sure it made a tiny story on CNN and now they just show the video with the title "Breast Cancer Patient Livid After TSA Screening'. Then I went and read the full story on the woman's blog. 

The TSA has issued a small apology but apparently they don't get it. Even their supervisor in the video is pretty darn useless.

Seriously Deborah, the woman in the video, told the TSA agents she had breast cancer and they still didn't get it. Really? She is undergoing cancer treatment and you treat her like a piece of crap.

Breast Cancer Idiocy

First day of radiation treatment. I look like I'm about to make a run for it which is accurate. Radiation is frightening to me. Something about not being able to see the laser, see the treatment and having this machine moving around you just scares me. I'm sure I'll get used to it but right now.... I hate it. #radiation#radiationmondaysucks #stillfightinglikeagirl

This is a picture of Shannen Doherty, from '90210', as she starts radiation for breast cancer. Why do I call this idiocy? Her business managers allowed her health insurance to lapse. She had to sue them. Can you believe that?

What competent person would allow health insurance to lapse when they were responsible for other people's insurance.

A cancer diagnosis is stressful enough but if the 'moron's (and I use the term loosely) let your insurance to lapse, that would be insanity. Even though insurance regulations have changed so that the pre-existing condition clause is no longer legal, who wants that extra burden on you as well?

If you think what the costs of breast cancer treatment can amount to, that could bankrupt just about any one without insurance.

My message to Shannen: I hope you sued the pants of those idiots. And yes, you can make it through breast cancer treatment. Hugs to you!

On The Road Again

This weekend I am on the road again. It is a real road trip. I drove with a friend (well she drove all so far) about 840 miles to the middle of Indiana from Massachusetts. We spent a night at my brother's and two nights in a hotel and then we will go back to my brother's and home. A road trip without the Thelma and Louise business.

Why am I on a road trip like this when I am among the least health people in the country? Because:

1. I wanted to
2. Its a great change to do something completely different
3. I am meeting some people I have known online since 2007 but have never met in person. 

Reason number 3 is the most important to me. When I was diagnosed with breast cancer, I went online for support and to find out information about my latest health debacle. I met all these wonderful women who were also coping with their own breast cancer demons. They were amazingly helpful and supportive and got me through some tough times.

But I never met them in person and now here I am. I will get to meet some of the people who were very important to me and understood what I was going through like no one else could. 

Changing Your Wardrobe For An Ailment

I couldn't sleep last night (again - thanks to back pain) and started wondering why women with breast cancer instantly start wearing pink and accessorizing with all things pink upon their diagnosis? Why do they feel the need to do this? I just don't understand. I admit when I was diagnosed with breast cancer I did go out and purchase one pink breast cancer t-shirt which I wore to chemo once and then donated it. I was also given breast cancer t-shirts by family and friends after they participated in an Avon walk. I never wore them either.

What if your ailment didn't have a 'pretty colored' ribbon, would start wearing that color? If you were diagnosed with narcolepsy, for example, would you start wearing black and accessorize with black ribbons? Or if you had ADHD would you wear orange and orange ribbons? Probably not.

With my medical history I should then wear purple (thyroid cancer and fibromyalgia), blue and purple (rheumatoid arthritis), light blue (lymphedema), and pink (breast cancer). I am probably forgetting something but that's enough of a rainbow for now. (See the whole list here.)

Pink has always been one of my favorite colors. I have always worn a lot of pink clothes. But now I actually stay away from pink as I don't want to be identified as a breast cancer person by the clothes I wear. So in some ways I am changing my wardrobe away from pink in a cringing way.

Call it backlash.

That Breast Cancer Bond Thingy

While I was at the gym yesterday, I was on the bike getting my cardio in when I two women who I know started talking next to me. Then one of them came over to said hi. I knew she had a lot of cardiac issues last spring and I asked her how she was doing. She said she is better now but still had some soreness on the side of her rib cage. That didn't seem like a cardio issue so I asked her what it was.

She had a mastectomy because she had her third occurrence of breast cancer. Twice on the left and this third time on the right. And all three were different cancers. I thought wow three different breast cancers and now two separate mastectomies. And over twenty years.

Of course we became instant pals because I told her about my breast cancer history. That breast cancer bond showed up.

I still find it funny when that breast cancer bond shows up. I have no other ailment that inspires such close bonds. ACL injuries? Nope. Fibromyalgia? Nope. Thyroid cancer? Nope. Rheumatoid arthritis? Nope. Breast cancer? Yep! Big time.

I think its a spin-off of all the unity behind pinkification. You get breast cancer and someone wants to stick a pink ribbon on you so you can become best pals.

Awesome Breast Cancer Blogs

I found the list of Healthline's best breast cancer blogs for 2016. I'm not on it (but I'm not perfect so I didn't expect to be). But the list is full of other women's breast cancer blogs that are current. If you have breast cancer, I strongly suggest you read follow these blogs. At least some of them.

My current favorites are on the list. You need to go read the list to find your favorites.

She Left Us A Great Legacy

Last week, Jody Schroger, passed away from metastatic breast cancer - that's the kind that kills people. Jody was legendary in the breast cancer world. Why? Because she did so much. She helped build the metastatic breast cancer community, on Twitter and elsewhere.

Jody was the kind of person we should all be. Very low key but very strong in her actions. If you google her, you will be surprised on how many places she turns up. That's because she helped found Breast Cancer Social Media.

"The Breast Cancer Social Media (BCSM) community began with a simple question – could the power of social media be utilized to unite, educate, and empower those affected by breast cancer?" 

Two breast cancer patients, one of them Jody, and one doctor set out to answer that question. They have a huge impact on the breast cancer community through their Twitter chats. I am not a Twitter chatterer but I did read through some of them and was impressed with them. (If you search #BCSM on Twitter you will see what I mean.)
I actually met Jody, really met in person, at some event we were both at. Was it a DOD CMRP or a pharma industry meeting? I can't remember. But after the meeting we both ended up in the same terminal at the airport and hung out for a while as we waited for our flights.

It wasn't a significant conversation. We talked about a few issues, chit chatted about being stuck in an airport, as well as coping with cancer and the importance of being active. Then we parted and headed for our respective gates. I had a weird feeling that I would probably never see her again. She left us a great legacy.

Why read blogs anyway?

Back in the early 2000s, I worked for a larger non-profit in Boston. One of the staff attorneys spent a lot of time reading these things he called 'web logs' that were online. Now I had heard of them but never thought much of them. They were one of the first internet fads...

Then I started writing one, because it helped me cope. All bloggers ask themselves the question once in a while 'why the hell am I still blogging?' We all have our reasons. Some of us stop blogging or our blogs change topic completely but we keep writing. And some of us still blog about the same damn things because we have no lives I guess.

Now the question becomes why do readers read these blogs anyway? Especially if they contain all sorts of useless and senseless crap that only makes sense to me the writer? And even more especially if its about cancer, that lovely ailment?

Someone is finally taking the time to quantify and ask questions about this. As you can see in the little box to the right ==> where it says:  "Blog Impact Survey - til 4/30/15" in big bold letters. There is a link to a survey because another blogger, Rebecca Hogue, got smart. 

She is conducting a study on how breast cancer blogs are impacting people who read them. She put together a survey that takes about 5 minutes to complete. (She says 5 minutes but I took it myself and think its probably more like 3 minutes or if you read fast, maybe only 2 minutes.) She is most interested in the final question (and I'm not tell you what it is - you have to take the survey to find out). Here's the link if you can't move your mouse far enough over to the right . 

You don't have to complete it today as it is open until the end of the month. I will probably even remind you in the future because I know I can't remember anything for mroe than a nano-second anyway.

Can I just say "please" one more time? It would really be nice if we knew why people read our blogs and if they help anyone or if we are just senselessly babbling our way through our illnesses? 

Thank you.