Tuesday, December 31, 2013

Too many souls were lost in 2013

It was a tough year for women with metaplastic breast cancer. We lost a number of women in our group and countless more we never met. Here are a few of our own we want to remember:

Nancy Manguso: I never spoke to Nancy but I’ve spoken to her daughter Beth many times.  Nancy was an inspiration to Beth and to many of us as she endured difficult chemo regimens and participated in trials. Beth worries about how she will manage without the love and support of her mother. She knows her children will have slightly lesser lives without the opportunity to meet and learn from their grandmother. And for us we know that without women like Nancy there will be no scientific advancement.

Brenda Perry: Brenda had an unshakable faith. She was stage 4 long enough to endure multiple chemo regimens and even as she learned the last one didn’t work and prepared for the next, she believed everything would be ok in God’s hands. She said she rarely got down and if she did she would simply pray and in a bit she would feel much better. There was no time for pity in Brenda’s life. She left behind grandchildren, two daughters and a loving husband who posted this news upon her death:

“My wonderful and beautiful wife Brenda Perry 's battle with cancer came to an end this morning. She is in God's hands now.I will miss her for eternity.”

Janet Famous-Wettig: Janet was the mother of two grown children. Her daughter was a college athlete, playing La Cross at the University of Cincinnati. She was an inspiration to the young women on the team and looked forward to when her daughter came to town to play an area university. I always wanted to meet Janet but I had thought there was more time. She was the first woman to friend me when I joined the online support group. I continue to see photos posted to her page by her many friends who miss her dearly.

Dr. Mindy Green; Leah-Anne Marshall; Mary Chadwick: These ladies were all so young. Mindy had offered advice on lotions to use for radiation. She was an example to us all on how to handle cancer with dignity. Her facebook page still has a beautiful photo of her with her adorable little blonde curly headed daughter. Leah-Anne was still using her wedding photos on her page, that’s how newly married she was. And Mary’s last post was a photo of her little girl standing next to Santa. Each was so full of life and I’m sorry we didn’t have more time together but I’m even more sorry for the little ones they’ve left behind and the young men who have lost a lifetime of making memories with these beautiful ladies.

From Monica:

Pam Hansford Ogletree: Pam was such an open heart. I remember I was new to the board and was headed to MD Anderson. She was already there and saw Dr. Moulder in the cafeteria line. She told her that I and Ilana would be there shortly. When I saw Dr. M she was impressed with how close we all were...Pam barely knew me but treated me like a sister! I miss her.

Dr. Mindy Green: Mindy was an inspiration to me. She was so amazing and had such faith. I am still devastated that she is gone. I didn't even realize she was stage 4 until she was very sick...so I never got to tell her how inspiring she was to me.

Andrea Blake: Andrea was THE most positive person I have ever known. She didn't feel sorry for herself for one possible second. She was always a beacon of light and a treasure to know.

From Stephanie:

Andrea Blake: She was a RN with experience working neurosurgery and most recently in the ER. She's from Nova Scotia. IYears ago she also worked off shore on an oil rig as the nurse.

Mom to Jackson and Kennedy (teens). Kennedy must have just finished high school b/c she just got accepted into a four year nursing degree program. Andrea was so proud.. Very loving toward her kids and friends. Loved by many friends and was a part of a big family that meant the world to her.

As an ER nurse she was the type of person who was ready for anything and everything. She accepted and loved people. After her cancer diagnosis she refined her ability to keep negative things out of her life. She tried very hard to see the positive side of things. One of her blog pieces (the one I like the best) she listed all the terrible negative things about cancer and then discussed how she was able to find the positive in that very bad thing.  She would say "I'm working on being more Zen about that" if there was an issue that triggered impatience or hostility.

And lastly, she was a music lover. Especially the blues. I mailed her a package with about 20 CDs of blues music about a week or so before she died. I hope her kids are listening to her kind of music

Amy Leader Scott: Nicola Jiggle; Doreen Austman; Wendy Croft Salinsky; Michelle DiGiovanni Ivers: I wasn’t fortunate enough to get to know these women but their loss is still felt amongst the women in our group. We know that even though our time together was short and only superficial and from a distance, each of these women made their marks on the lives of the people who loved them.

And, the world is a lesser place without them all.

Sunday, December 1, 2013

The thing about Metaplastic Breast Cancer

It’s December and so it’s that time of the year when women around the world begin to consider their New Year’s Eve toasts. Some will “wing it” while others put pen to paper but most are preparing to declare their victory, to use the “S” word and put an exclamation point on 2013. “F U Cancer! I win! I’m a survivor!” Will ring out across the land.

Sadly for 30% of these women, the words will be spoken too soon. There may be years between now and the day they realize the “S” word does not apply to them but for now they will declare
themselves victorious.

metaplastic breast cancer
But the thing about Metaplastic Breast Cancer, the thing is…. It comes back… “early and often.” And to be sure there are MpBC women who declare their victory too soon but there are even more of us who know better, more of us who quietly cross our fingers and do the sign of the cross  because we are waiting…. waiting for the other shoe to drop. We know all too well that there is no victory, no “S” word for us, not yet. We whistle past the graveyard hoping to tiptoe into the next year unnoticed by Metaplastic Breast Cancer.

My first diagnosis came in Feburary 2012. By the end of September 2012 I was done with surgeries, chemo and radiation. I was a mere ten weeks out, still visiting my support group, still waiting for the short curly hair to grow out, still wondering if the chemo fog would ever lift. I barely had time to consider how I would define survivor when I found a new lump Thanksgiving weekend. It took nearly a month to get to the doctor, schedule the scans and have a biopsy done just two days after Christmas. On New Year’s Eve, I was still waiting quietly for the pathology report… crossing my fingers and sign of the cross.

And, the same was true for many of my metaplastic friends. While I quietly waited for my results women in our group silently did the same. When the diagnosis came back “more MpBC” and I told the others of my fate, many more stepped forward to share their news as well. Two young mothers, a few more women under 50 and a few of us with college-aged children all on our second round with this disease.  Some of us were luckier than others with the new tumors still confined to our breasts, some not.

So as the year closes out, it feels like a parade of women in our group (many first diagnosed after me in 2012) are still in treatment for their second and sometimes third time. Metaplastic Breast Cancer is considered chemo-resistant and some studies show recurrence rates (5yr DFS rates) at nearly 50%. It comes back quickly, and boy-oh-boy do we know that. There is no time to declare victory, we will not rush to judgment. There are no blowing horns, we are quiet, silently listening for the other shoe……

To learn more about Metaplastic Breast Cancer go to http://www.metaplascticbc.com
Gloria Gaynor - I will survive

Monday, July 8, 2013

Cha, cha, changes

I watch the ripples change their size
But never leave the stream

 At first I didn't question the pathology report. It was hard to focus on much past the places where the word "carcinoma" was written. It took a few weeks, maybe even months before I started to look for additional information in the report.

I was reading and article on the P53 gene, then one on cytokeratins, then epithelial to mesenchymal transition. I quickly began to wonder where could I learn about my IHC or if there was a mutation in my P53 gene. This search brought me back to my path report where I found some of the information I was looking for. Then I checked my genetic tests, the BRCA and BROCA tests. (I still need the BART)

When I didn't find all of the information I was looking for in the pathology report and genetic tests I started asking other MpBC women about their results. Some women had detailed path reports for certain but others had reports that only said "metaplastic carcinoma" and nothing else. No subtype, no IHC, no detail at all.

My second pathology report was from a needle biopsy. It said in part, "... consistent with metaplastic carcinoma with areas of spindle cell carcinoma and squamous cell carcinoma, acantolythic viariant."

 I was anxious to read the final path report from the subsequent MX. I wanted confirmation on the "acantolythic viariant" I was curious about that aspect of the tumor. Remarkably, the report for the mastectomy merely stated "metaplastic carcinoma" with no other detail. I was so frustrated I could have spit.

It may be different for ductal/lobular carcinoma but with metaplastic carcinoma there is more to know. Is it spindle cell, matrix producing or maybe squamous? Or is it some spindle and some matrix? Is there an element of IDC? How much? What's the percentage of IDC and does the treatment change based it?

On one hand I understand that knowing all of the details isn't really going to help any of us today. We will be offered the basic triple negative treatments because that is the standard of care. (Whether it is effective or not, they don't have another option.) But at the dawn of the era of personalized medicine the pathology of each tumor should be the foundation on which we build. The details MATTER. That information needs to be in each report.

Today, there doesn't seem to be any consistency to reporting the details of a tumors make-up in the pathology report. This has to end. Every tumor must be analyzed for it's immunoreactivity and cell type, not just it's size and shape. The answer to our questions and the solutions to our problems lie in knowing these details. Let's make it our mission to change the way things are done and create a system where this information is identified and cataloged for every tumor so our researchers can  discover the individual treatments we each require to kill the cancer we have, not the cancer that is "kind of like ours." Who is with me?

Here is a link to a recent article on the need for a new system for biobanking metastatic tumors.

 Changes- David Bowe

Thursday, June 6, 2013

I can see clearly now the rain has gone

I was sitting in the exam room at the oncologist's office. My husband had his arm around me as we waited for the doctor to come in. I had a box of Kleenex on my lap because I knew I wasn't going to make it through the appointment without crying. Why should this day be any different? I had, after all, been crying daily for the past 10 or 12 days. Emotionally, I was at the end of my rope. I knew I couldn't do this any longer.

Physically, I wasn't in any better shape. My skin was ash gray. I had two black eyes. I could barely walk from the car to the door of the doctors office. I was bald (naturally). I looked like an actual cancer patient, something I had managed to avoid for most of the other 14 chemo treatments I had taken in the past year.

About a week earlier while lying on the couch I had announced to my husband, "I'm not doing any more chemo." I told him I couldn't take any more. "I'm going to tell the doctor when I see him, that this will have to be enough because I just can't do any more. I'm done."

My husband, who was sympathetic to my cause and who had not wanted me to have to do chemo in the first place had told me he was O.K. with that decision. Each time I started crying over the next week, he would put his arm around me and say, "It's O.K. it's over. You can tell the doctor when you see him."

So, there we sat in the exam room. I was bracing myself for a small fight. I figured he would try to convince me to take the last two treatments. I was close to being done anyway.

The doctor walked in and said hello. He sat down across from me looking at the results of the blood test. He looked up and said, "You're blood counts are not good. Are you bleeding?"

"Bleeding? Like I cut myself bleeding?" I asked.

"Yes," he said. "Like that."

"No, I'm not bleeding that I am aware of." I responded.

"Well, we need to get you into the hospital for a transfusion. You're hemoglobin is at 5. You won't be able to get your next treatment tomorrow."

I start to cry, "I don't want to do anymore." I say. "I can't, I'm exhausted."

The doctor looks at me and looks down at the blood report. "Well, three is the magic number." He says. "I think three cycles (1 cycle equals 2 treatments) will have to do. We've been pushing you because you are young and healthy but I think you've done as much as you can."

I'm still crying but relieved. I'm so tired. I can barely move or think clearly but I know he is not trying to convince me to continue with the treatments. I've been so worried that not doing the chemo would put me at a higher risk but the doctor is saying he is comfortable with stopping at three.

It's three weeks, one hospital stay and four pints of blood later and I'm finally feeling better. The nausea still comes on a little and I'm not as strong as I was before this latest round of chemo but I'm exercising and getting better every day. The downpour has slowed down to a drizzle and the storm is finally moving out. I'm a long way from the rainbow's end but at least I can see it from here.

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright, bright
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been praying for
It’s gonna be a bright, bright
Sun-Shiny day.

 P.S. I hope I can start using this blog for it's intended purpose. Soon, I want to be involved in the conversation about breast cancer and research. I'm very much looking forward to being part of the solution.

I can see clearly now the rain has gone

Saturday, April 20, 2013

The Sound of Silence

The Sound of Silence.

The hum of the road under my tires, the buzz of traffic whizzing by outside my window. That's all I could hear today. For two hours I drove to a weekend getaway but I couldn't turn on the radio or the Ipod. I've reached that point when the music doesn't talk to me.

I'm too tired. It doesn't lift me. I can't think. The words don't hold special meaning. There is only silence in my head. How can I make it through the next hour, day, week? I'm halfway through the treatment and it has finally beaten me down enough that I no longer care.

How many more days must I feel like this? Is there a song that can make the fatigue and nausea go away? Oh, how I hate to wish away my days but I count them out anyway....  Four more treatments on Tuesdays means eight more "bad Thursday's and Friday's." Will I feel better on my off week? It doesn't feel like I can but I hope I will. Maybe the music will return next week when I have that break but I can't be sure. As long as my focus is so narrow and my level of concentration so low, I won't be able to hear the music.

It's the worst part of the chemo and I know it will disappear and I will be able to feel normal again and enjoy my life again but for now all I have is the sound of silence.

Saturday, April 6, 2013

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

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 

Sunday, February 24, 2013

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

Friday, February 15, 2013

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. 

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

Saturday, January 26, 2013

No Time to Kill

There's no time to kill between the cradle and the grave
Father Time still takes a toll on every minute that you save
Legal tender's never gonna change the number on your days
The highest cost of livin's dyin', that's one everybody pays
So have it spent before you get the bill, there's no time to kill

-Clint Black

I've tried to start this post maybe three times now. I keep starting and stopping unable to focus on what is happening right now. I'm just moving through the days attempting to focus on work or home when it is appropriate. Trying to not think about my impending surgery and what new challenges it will bring. I'm trying to kill time.

The concept of killing time is something we are all familiar with. We all feel the need to fill time at some point. Form the time we are children when the anticipation of Christmas morning fills us with a giddy joy. The thinking about what we might get from Santa is probably more fun then what we actually receive. So we spend hours wishing and thinking and planning what we will do with our new toys, effectively killing the time before Christmas morning with joyful thoughts of the day to come.

Sometimes killing time as an adult can be similar. Planning a wedding, waiting for the birth of your first child or moving day into your new home can give you that sense of joyful anticipation. The planning and considering the colors of your flowers, the name of your child or where you will place the new couch allows for the time to slip by without the fear of potential pitfalls creeping into your head. The thoughts of divorce or an ill child or problems with you new homes foundation are easily cast out of your mind as the many details of this new challenge can bring positive thoughts easily to mind.

Waiting for this surgery has not been such a joyful occasion for me. I'm worried about the pain I will be in immediately following the surgery. I'm worried about the bills that will fill my mailbox over the next few months. I'm worried about the limitation that will come with the surgery. Will I be able to play softball or lift things with my right hand? Will there be more lymph nodes removed? Will the pathology reveal new tumors or change the prognosis?

The planning for my surgery is not nearly the same kind of fun as planning for a new home. My purchases are decidedly unsexy things like pajamas for the hospital or large tops that button in the front so that I can get in and out of them easily. I have a prescription for a camisole with little pockets in it to hold the drains but I haven't worked up the energy to go out and buy the garment. Buying medical wear doesn't really help kill the time in the same way that say getting a new crib for your first born or even (at my age) getting a new dining room table might.

I'm filling the days and I think I'm doing ok projecting normalcy to my friends and co-workers, many of them whom I have not told yet of my surgery. At work it is easy to focus on the details of the daily news cycle and interact with co-workers, joking about the ridiculous stories we see and complaining about the usual corporate silliness. At home I can focus on my husband, dinner, cleaning and the usual things. But the fears are never far away. There is always a moment when the house is quiet and I am just stirring the soup. Or a moment at work when the story I am reading is on cancer. Or the drive home alone in the car. Those moments are filled with thoughts of surgery, thoughts of cancer, fears of the future. And then someone rings the bell or the light changes and I am back to killing time cooking or driving or working.

I'm not crazy about killing time. Time is the one thing I need more of. It's the one thing I am afraid of running out of. It's the thing above all others I wanted more of in my life. I hate killing time but here I sit trying to do just that. Wishing for the day this cancer is gone and my life is back. The days when I can just focus on the day itself without a need to look forward or backward but instead just enjoy now. Wishing for the plain old days when there is nothing new on the horizon and no reason to kill time looking for it.

If we had an hour glass to watch each one go by
Or a bell to mark each one to pass, we'd see just how they fly
Would we escalate the value to be worth its weight in gold
Or would we never know the fortunes that we had 'til we grow old
And do we just keep killin' time until there's no time to kill

No Time to Kill

Wednesday, January 16, 2013

Call me maybe

Your stare was holdin',  
Ripped jeans, skin was showin'  
Hot night, wind was blowin'  
Where you think you're going, baby?
(Thump, Thump, Fist pump)

What's this have to do with breast cancer, you say? Well nothing. And, that's the point. 

Yesterday I was on my way to Washington Radiology to get my bone and CAT scans. I got in the car, plugged in my Ipod and went straight to the playlist I've been listening to lately. It's full of songs that make me think about cancer, my life and serious things like "what in the heck am I going to do?" I got a little ways down the road, feeling lonely, sad and more than a little worried about the scans when I thought to myself "something is wrong here." 

I wasn't feeling positive. I wasn't putting my best effort out there. I wasn't bringing a good attitude to the day. Why? I didn't know why I wasn't at least trying. I don't know if positive thinking can really affect your health. I kind of tend to doubt that it could cure my cancer or shrink the tumor. However, I didn't KNOW it wouldn't help. So, why wasn't I trying?

I hit "stop" on the Ipod, flipped up an down the list and found "happy music." And BOOM! Out jumped "Call Me Maybe," then, "Marry you," then "Suds in the Bucket." In no time I was singing in and dancing (mostly head bobbing and hand gestures) in the car. I didn't know if my scans were going to come out ok but I at least I wasn't going to waste the morning crying about it. 

A nice lady in my support group once told me:
I have to push really hard to get the "i'm sick, oh no cancer, poor me what if i die" out of my brain!! I just keep talking to God and the negative thoughts leave and i'm ok for a while, then they come back and I push some more... LOL I think that's why they call cancer patient's warriors... I get it now!! It's a battle of the mind as much as the body.

It's tough to keep those thoughts at bay and they were creeping up on me again by the time I made it to the CAT scan. I mean, even for me, it's not every day that you strip down, get an IV, repeat your medical history to a stranger and crawl into a tube. In the midst of all of that it's natural to think about your cancer and wonder about your life. The Ipod was out of the question this time so I fell back on something I rarely use, prayer. Have you ever heard the saying, "There are no atheists in a foxhole?" Well, there are no atheists in a cancer staging scan either. 

I'm ashamed to say I stumbled a few times. I pray but not formally, not the Our Father and Hail Mary. I usually just silently thank God for the day or ask for relief from suffering for a friend. But it's been awhile for me and the Hail Mary. I repeated the two prayers a few times to myself while the machine moved slowly over me whirling and clicking. And then, it was done.

Who cares if we're trashed 
Got a pocket full of cash 
we can bloooo, ooo, uuu, oooow!
Shots of patrooooo, uuu, ooo, uon!
And it's on, girl

 When the negativity returned in the afternoon I was ready for it. I thought, "I'm positive." Then quickly changed that in my mind to, "I'm positive, I'm negative." I said that to myself. "I'm positive, I'm negative. I'm positive, I'm negative. I'm positive, I'm negative." I was willing myself to believe. I didn't KNOW that it would work but I HOPED it would. "I'm positive, I'm negative. I'm positive, I'm negative. I'm positive, I'm negative." I was so scared. "I'm positive, I'm negative. I'm positive, I'm negative. I'm positive, I'm negative." It just HAD to work.

When the doctors' nurse called to tell me the scans were clear I wanted to dance and cheer and scream and let it all out. I had fought myself all day long - which sounds bad, but it wasn't. It was the first day in a week that I HAD TRIED to fight myself. I wasn't listening to the happy music, praying to God or positive about my cancer. I was just giving in. So, finding a way to keep the negativity in check was a pretty big victory. And, while I'm sure it didn't make any bone cancer magically disappear, it did make a few clouds over my head move on.

'Cause it's a beautiful night 
We're looking for something dumb to do  
Hey baby 
I think I wanna marry you

(Fist pump, fist pump)

Call Me Maybe
Marry You

P.S. Found this story on positive thinking after I wrote this post.