Every storm runs, runs out of rain

I know you're feeling like you just can't win, but you're trying
It's hard to keep on keepin' on, when you're being pushed around
Don't even know which way is up, you just keep spinning down, 'round, down…
Every storm runs, runs out of rain
Just like every dark night turns into day

Sometimes I hear a song and it has a vague connection to my cancer experience. There will be a line or two that makes me think about some aspect of my daily life or of some broader concept related to cancer but this isn't one of those songs. This is a song that feels directly connected.

I try to stay positive. I tell people what they want to hear. I pretend I feel better than I do for my husband and parents. I try to keep up at work. It's just so damned hard some days. Getting through this once seemed like an insurmountable task when it was first presented but getting through it again.... well, "It's hard to keep on keepin' on, when you're being pushed around."

The first time I heard this song I immediately knew it had to mean something to me. I need this kind of music in my life. It was a hard week for me. I couldn't do my chemo due to my blood counts dropping. I felt so tired. I had to go into the infusion center every day. I couldn't make it to work. I had to have a blood transfusion. "I know you're feeling like you just can't win, but you're trying."

So sometimes I need something to remind me that this will all be over at some point. Nothing last forever. Good things don't and neither do bad. "Every storm runs, runs out of rain, Just like every dark night turns into day."

I have to hang on. I have to keep moving forward. I have to push myself to remember that every day the end of this is one day closer. "Just put your feet up to the edge, put your face in the wind
And when you fall back down, keep on rememberin'."

It's been one heck of a storm for me, my own Katrina and Sandy put together. But I feel a little better today. And, it will be better tomorrow. How do I know that? The music tells me so.


It's gonna run out of pain
It's gonna run out of sting
It's gonna leave you alone
It's gonna set you free
Set you free 

Every storm runs, runs out of rain

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

All-Star

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
Kryptonite

Kryptonite

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.

BuzzKill

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 

Back Home Again

 There's a storm across the valley clouds are rollin' in
the afternoon is heavy on your shoulders.
There's a truck out on the four lane a mile or more away
the whinin' of his wheels just makes it colder. 


Hey, it's good to be back home again
Sometimes this old farm feels like a long lost friend
Yes, 'n, hey it's good to be back home again 
-John Denver

Yesterday I went out with my husband to visit some friends. A mutual acquaintance had died during the week and we went to find out more and see about the services. On our way back to our place we were driving down a familiar road. The sun was out, you could see "Skyline Drive" across the Shenandoah Valley. The Blue Ridge Mountains surrounded us, as we passed over the Shenandoah River.

We were talking about something and laughing at some inside joke when John Denver's "back Home Again" came on the radio. I like to listen to a local county oldies station on the weekends, it just seems to fit with the surroundings most of the time. The strains of an old country song playing from an AM station and filtering out of our old truck radio always bring me back in time. It just works for me.

Anyway, "Back Home Again" came on and while we continued our talk the music was creeping into the back of my head. I was enjoying myself, I felt healthy, I had been out of the house all morning and wasn't thinking about cancer. I think it was the first time in more than a year that I really felt like I didn't have a care in the world. I felt "Back Home Again" in my own skin. I miss that.

Somewhere in the past year between treatments, appointments, tests, scans, blood draws, surgeries, trying to keep up at work, pretending to be normal, obsessing over research and focusing on how I can make this cancer thing mean something through this blog or support groups.... I lost a little bit of me. And, for the first time in awhile I felt that again.

Of course like everything about this cancer thing, timing is everything. There is a "storm across the valley" for me. I'll be starting chemo again in a few weeks. There will be more fatigue and more tests and appointments and more trying to keep up with work and blogs.... but for a few minutes, bouncing along in that old Ford with my husband smiling and chatting about nothing important, I felt "back home again." I'm going to hold on to that for as long as I can this time.

It's the sweetest thing I know of, just spending time with you
it's the little things that make a house a home.
Like a fire softly burning and supper on the stove.
And the light in your eyes that makes me warm

You should have seen it in color

That’s the story of my life
Right there in black and white
And if it looks like we were scared to death
Like a couple of kids just trying to save each other
You should have seen it in color

-Jamey Johnson

This morning it occurred to me (a little late) that I hadn’t documented the scars from my mastectomy and I needed to do that before they fade. I’ve been taking photos throughout my treatment. Despite being a professional photographer, I mostly just use my Iphone. I don’t use my real camera often because of the awkwardness of shooting myself and the knowledge that very few people will ever see the photos anyway.

While shooting I began to contemplate whether I should convert the photos to black and white. As a photographer so I’ve debated the merits of color vs. black and white many times over the years.  I’ve seen a few photo galleries on breast cancer recently and they always seem to be in black and white. Here’s one called “The Battle We Didn’t Chose.”  The Scar Project, a well known photo gallery is about half black and white as well.

Like most photographers I love black and white but over the years I’ve been annoyed by its use many times. I think photographers mistakenly believe that black and white conveys a stark reality and a mood that color detracts from. As if there is some innate truth that can be seen if you eliminate the color. But I don’t believe that. I believe it’s used too often to imply that situations are in fact black and white. And, of the many things that cancer is… it is not black and white.

A picture’s worth a thousand words
But you can’t see what those shades of gray keep covered
You should have seen it in color

The scars from my DIEP Flap surgery.

Yes, you either have cancer or you don’t but if you do… living with it is not that simple. I’m not happy or sad, positive or negative, or even going to live or die. There is a lot of meaning in those shades of gray. And, the colors tell an important part of this story.

For starters this story cannot be told without the color red. Oh sure, there is the obvious kind of red like with blood or the metaphorical red of anger. But red appears more subtly in my experience. Like with my husbands green eyes. The green is exceptional when surrounded by the bloodshot red that comes with his tears. He is a pretty tough guy and when I see that red it reminds me that while I am pretending to be strong for him, he is pretending for me as well. Black and white does not tell that truth.

The Red Devil

Then there is the red from my scars. They are jagged and angry and stand as a permanent reminder for me. And even as the red will surely fade to pink I’ll always have these scars to bear witness to this struggle. There is the red of the “red devil,” the drug so aptly named because it is the most caustic form of chemo offered to breast cancer patients. And, there is the red flush of your face from the steroids, the red burn of your skin from the radiation and the flash of red in the port as they prepare it for your next dose of chemo. Black and White cannot show these truths.

Surgical Drains

There are other colors as well. My new breast is a particularly odd shade of orange, yellow and blue-green. The chemo chairs are brown and the hospital gowns always seem to be blue. My favorite blanket is a maroon plaid and my dogs, who lay by my side when I am not well are black and tan and chocolate. 

So, I don’t know how a black and white photograph could ever do justice to this story. My own memories are filled with colors. For my part I’m going to use color in my photos so that my memories can stand true to my experiences. I won't diminish my reality in order to present a certain view of my life as starkly black or white, attempting to convey some meaning that doesn't exist. This story doesn’t deserve to be white washed. It is rich with depth and subtleties. Today the sky is blue and the grass is brown, tomorrow there will be clouds but no rain. My cancer should be gone with my mastectomy but it may not be. I could have more chemo or not and I have no guarantee with either. I’m happy and sad at the same time and my emotions cover a wide range they are rarely just one way or another. The world is a colorful place and this story is meant to be told with every hue. 

Kodachrome
You give us those nice bright colors
You give us the greens of summers
Makes you think all the world's a sunny day, oh yeah!
I got a Nikon camera
I love to take a photograph
So Mama, don't take my Kodachrome away

In Color

Kodachrome