Tuesday, March 19, 2013

Hey now, You're an All Star

Hey now you're an All Star get your game on, go play
Hey now you're a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold

So during the recent #BCSM tweetchat the topic of conversation was advocacy and burn out. I chipped in with my method for avoiding burn out. I said, "My BC life is my "secret" life. Try to avoid talking BC at work and even some at home... have to compartmentalize this some"

A very nice lady who I follow on twitter responded to my tweet with the following, "that makes me sad u feel u can't discuss BC openly."

I tried to explain it a little better but for everything that twitter offers in terms of bullet points and brevity it doesn't offer much in the way of depth and clarity. This is a topic I've had on my list for some time now so I want to talk a little bit about this idea of "my secret life."

The main concept that rolls around in my mind is the idea that I'm somewhere in the middle of this advocacy thing. (Probably more toward NOT being one than being one). So talking about breast cancer is a real balancing act for me and I really truly believe, many other women.

I think somewhere between the first time you tell someone you have cancer and the day you're getting your first award for advocacy.... you're just a lady who talks too much about one thing, and lets face it, nobody wants to be that person.

I'm not an All-Star advocate. I'm not even out of treatment. I haven't even decided if I want to be an advocate, All-Star or otherwise. So I have to figure out how to communicate my willingness to help others without turning into the "cancer lady" everyone avoids.

I appreciate the idea expressed to me through that response. It would be sad if I was afraid to talk openly about my cancer experience. I would be sad for me as well. But that's really not the case. I make it very very clear at every appropriate moment that I am willing to talk. That I am not embarrassed by my disease or about the details of my treatment. I will tell you anything you want to know. The trick though is to let others know you will happily talk but not appear to be focused on some new found agenda to drag everyone else through your experience with you.

So I've found myself with this "secret life." For one thing, I'm writing this blog and my family, friends and co-workers don't know about it. I have a separate twitter account for breast cancer talk. I have a new group of facebook friends who are patients and former patients. And, I'm working on a website for metaplastic breast cancer with some other MpBC women.

The thing is... these things I'm doing aren't really a secret so much as something I'm doing for myself and not ready to share with others. I don't want my co-workers to read my blog because it's for me and (hopefully) for other women with breast cancer. It's really not for them, so why would I tell them about it? The twitter account? Well, it's the same thing. It's helping me feed my need to know more about what is happening in the research and advocacy community. I feel like talking about my experience more than I think my friends and co-workers want to hear about it. I can't hardly tweet about my mastectomy on my twitter account that has my professional followers. (As small as that group is.)

As for my new friends, I feel good about offering them support as much as I benefit from the support they offer. It's that shared experience thing. I don't think that is an odd concept that is difficult to comprehend. We understand this experience in ways that our family and friends don't.

So, I have a "secret life" on the internet with my breast cancer crew. I'm still thinking about where this will all go in my life. One day I may go public but for now I'll let others be the Rock Stars and I'll watch the show from the wings and applaud.

So much to do so much to see
So what's wrong with taking the back streets
You'll never know if you don't go
You'll never shine if you don't glow


Saturday, March 16, 2013

Call me Superman

I took a walk around the world
To ease my troubled mind
I left my body laying somewhere
In the sands of time
But I watched the world float
To the dark side of the moon

I feel there is nothing I can do, yeah

First dose of chemo down. Once it starts again you just want to "leave your body laying somewhere" and let your mind disconnect for a bit. But it doesn't work that way. Eventually your mind and body are together in the same place and feel the same thing.

You go to the infusion center, a little nervous, even if you know what is about to happen. As long as it all goes smoothly you leave a little relieved, one down, you say. The pre-meds always make it deceiving though. The next day will probably still be OK and you'll begin to feel fooled into a sense of calm. "Maybe, it will actually be easier," you'll say to yourself. "I can handle this, it's not bad at all."

But eventually you will hit the wall and you'll begin to feel it. This time it was just an overwhelming sense of exhaustion. Not fatigue. I learned the first time exactly what fatigue is and how it is different than exhaustion. Either way, you'll be dragging and so, so tired.

This time I didn't fight it at all. At the end of the work day I went directly home and straight to bed. I didn't even bother sitting up on the couch for a few minutes to pretend it was a normal day. No sense in missing out on any of the rest my body needed. No cleaning up, no watching TV, no dinner.... just sleep. It was a good thing too, as by the morning I felt a little better. I managed to get dressed and back out on the road to work without trouble. I hoped that maybe one day would be the worst of it for this dose but that would be too simple now, wouldn't it? The exhaustion hit again by lunch and it was all I could do to hold my eyes open until the end of the work day. Again, I hit the sack as soon as I was home and again my body complied and slept.

By morning I was almost back to normal. Thank goodness I thought until I threw up outside on the way to my car. A little nausea hung on throughout the day but nothing too serious.

And, so I hope that is the end of the line for the first dose. I expect to feel better until the next one Tuesday and then I will repeat the pattern only with another day of sickness or exhaustion tacked on to each dose until there are no more good and bad days.... just bad days that end when the final bits of chemo are finally expelled.

Chemo is the ultimate irony. It's literally the cure that makes you sick. You feel so good, why would you want to poison yourself with this kryptonite and yet it is your one hope. Or, at least one little bit of insurance. And, so even if you know it will make you sick, sicker than you've ever been before, you go.... you take your medicine and brace yourself for what is to come hoping each time (even when you know better) that THIS time it won't be so bad. Hoping that THIS time it won't last as long. Hoping that THIS time will be the last time you have to make yourself feel sick in order to be better.

If I go crazy then will you still
Call me Superman
If I’m alive and well, will you be
There a-holding my hand
I’ll keep you by my side
With my superhuman might


Thursday, March 7, 2013

The Final Re-Port- What a Buzz Kill

You're like a screen flashing insufficient funds.
Cops knocking when the party's just begun.
You're a big rain cloud parked over my boat.
You're a cell phone splashing in my coffee cup.
A fumble on the one when my team was going up.
You're like brakes on my brain and all I know... 

It's funny how things work out sometimes. I was just sitting here thinking I needed to write a post about having a second port placed today but I hadn't heard a song that was working for me. Then right on cue Buzz Kill came on the radio. Boy, ain't it the truth?

Ever since my mastectomy people have been asking me how I feel and telling me I look good. I always tell them, "Well that's because they haven't given me the 'cure' yet." It's true too. I feel fantastic, like my normal self. I have energy. My color is good. My appetite is always great. I have hair. What more could a girl ask for?

But I've known for sometime that this day was coming. After my first chemo regimen I wanted that port out that day. I asked, "Can I get this out the same day?' It didn't hurt or anything but it just symbolized that I was still in the treatment phase. I wanted my hair back that day too but I knew I couldn't make that happen so getting that port out was big.

I've known a few people who have told me they kept their ports in for years. Besides the fact that my doctor wouldn't allow that, I wouldn't want that either. I don't know why my friends kept their ports, they said because they wanted to know it was there if they needed it. To me it had to go. I didn't want to keep the fear that close. Removing the port was the first step in moving away from chemo and cancer. I'd hate to wake up each morning and see it there in the mirror or feel it as I reached to scratch my shoulder. Why on earth would I want to think about cancer like that everyday?

Getting the port today means that soon I won't be able to pretend I'm OK. I'll start feeling sick again. I'll lose my hair. I'll be tired all day every day for the next few months. There won't be any way to hide it any longer. So, today is kind of the first day of my chemo buzz kill. I'm going to have to wait a bit to "get the party started." But I know that day will come too.

You're a buzzkill every time you come around.
Those beers might as well have been poured out.
Why are you still showing up and bringing me down?
Why do I keep letting you get to me
And mess up what that's not what's gonna be?
You walk right by crashing my high like I know you will
You little buzzkill. Baby, you're a buzzkill.


Sunday, March 3, 2013

Goldilocks and the three treatment choices

"I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin' 'bout the options
And talkin' 'bout sweet time"

My recovery from surgery is winding down and I am nearing my next step in the treatment of my recurrence or new primary. Either way, I have more cancer which puts me in the position of making more decisions about treatment.

I think anyone who has dealt with a rare version of cancer has had the same problem when it comes to treatment decisions. There are no great choices in the first place and with the added knowledge that available treatments are not designed for you and few studies suggest the right course, it can be unnerving at the least.

There is a chance my recent mastectomy cured me. A chance that all of the cancer was removed and is gone forever. However, there is a chance some cancer remains. The chance some cancer remains is not so small it can be ignored. It’s probably not as great as a 50% chance but it is more than a small chance.

My oncologist tells me that this is my window of opportunity for killing the cancer for good. He recommends more chemo. However, he has no idea if this new chemo regime will be effective against any remaining cancer cells. So I'm left with the following facts.

1.     There is no way to know if any cancer remains
2.     There is no way to know which treatment I should take
3.     There is no way to know if the treatment worked or if it was necessary at all

For the past few months I have been in contact with another woman who amazingly is in the exact same position as I. Despite the fact we live half a world away and we both share this very rare form of breast cancer we were able to connect through Facebook. Of course there are some differences in our cases.  Her new lump appeared in the same location as her original cancer, while mine was in a new spot. She found her new tumor while in radiation and I found mine ten weeks later. There are similarities as well. She also had a lumpectomy and dose dense A\CT for her initial diagnosis and a mastectomy for her second tumor.

Her doctors are advising her to forgo any addition treatment. No chemo. I’m frightened for her. I’m frightened for me too but that is why I will do another chemo regimem. I would never be able to forgive myself if something more happened and I knew I had a chance (however small) to beat the cancer but didn’t take it when I could.  We’ve both agreed that we will not be comfortable for some time regardless of our choice. She is comfortable with hers and I am comfortable with mine.

This brings me to the third “bear” in this Goldilocks story.

Today I was reading the facebook page from another woman with metaplastic cancer. She lives in Australia. Like the other two of us, she was diagnosed last year with MpBC and underwent chemo as her primary treatment. But unlike the other two of us, she has gone to great lengths to ensure her treatment was the absolute best possible plan for her individual case.  She had an Australian biotech firm test her tumor and recommend a treatment option.

So I was not surprised to learn today that she has now taken an additional step. She has borrowed a large sum of money from family and friends and gone to a clinic in Germany to undergo “infusions” intended to improve her immune system and train her body to fight off cancer. She has no reason to believe she still has cancer. She has not found a new lump. She has not had a bone or CT scan that indicates anything is amiss but she has decided to do everything in her power NOW to ensure her cancer never returns.  When I read her FBpage I thought she was a little crazy… until I read these words:

The only time I will feel shame or remorse is when I am told there's nothing more we can do and I know that I could have done more.”

So there you have it. The three choices of cancer treatments. You can do a lot, more than most of us would spend in time and money. You can do a little, something to hang your hat on and say, “I tried to win.” Or you can do nothing, a practical approach based on the belief that you are cured already and doing more would be torturing yourself to no end.

For me the second round of treatment will have to be ‘just right.” I cannot live comfortably knowing I did not make any effort at all when I had the opportunity and I can’t be obsessed with my condition to the exclusion of what I consider my own common sense. I hope the bed that I have made will allow me to rest comfortably for a very long time but I pray that these two women have also found a comfortable place to rest their heads as well.  

I asked him
"When it sank in
That this might really be the real end
How's it hit you
When you get that kind of news?
Man, what'd you do?"

Live Like You Were Dying