Life Post Cancer Treatment

Today's guest post comes from Beverly. I know Beverly through twitter and when I asked for some guest posts she immediately jumped in and offered! Beverly blogs at www.breastcancerwarrior.org and you can follow her on Facebook and Twitter.

Life Post Breast Cancer Treatment

Bilateral mastectomy with reconstruction?  Check.  

Port insertion surgery?  Check. 

6 weeks of chemo?  Check. 

Lymph node surgery?  Check. 

28 radiation treatments?  Check. 

Congratulations, Beverly!  You are finished with breast cancer treatment!  You need two additional surgeries this fall but “treatment” has been completed.  You are free to move about the world.

It is exciting!  I am done with treatment!  I’m back to life as usual.  Woo hoo!

Except...well...I can’t seem to get back into my groove.  Bouncing back has been harder than I anticipated.   Most breast cancer warriors will tell you that it is difficult to find a new normal after treatment ends.  The process of being poked, prodded and radiated is not always pleasant, but it brings with it a whole team of professionals watching over you like a dutiful mother hen.  Not to mention, we get to be an active participant in a process that is killing our cancer cells every day.  Then the much anticipated day arrives when treatment is over and we are on our own again, in a foreign, post-cancer treatment world.  It’s no wonder that many breast cancer warriors fall into a depression or struggle with serious anxiety at this point in their journey.

I have to be honest with you.  I started this blog two weeks ago and it was a litany of all of my frustrations.  I was having a bad day, feeling overwhelmed with life post-cancer treatment and my emotions were all over the place.  To quote Whitney Houston “I’d run from myself, but there’s nowhere to hide...”.  My husband walked into my office as I was trying to write and I burst into tears.  The tears and ensuing conversation with my husband brought emotional relief.  Much reflection over the last two weeks has brought insight into my struggles and finally, feelings of peace.  My hope is that my fellow warriors who are about to encounter this phase of their journey will read this and know that they are not alone, they are not going crazy and that it does get better.

Once treatment ends, we start looking better...the glow comes back in our skin, the radiation redness fades, our hair starts to come back and we aren’t at the cancer clinic every day.  Our fast paced world sets the expectation that we should jump right back into life and move forward.  Unfortunately, it takes several months for our bodies to fully recover from radiation and the lingering side effects of chemo.  For some women, it takes even longer.  For me personally, I have most of my energy back, but the radiation fatigue still hits hard when I least expect it and it feels like a slap in the face.  Patience is a virtue and I am always the least patient with myself.

We also have to learn to adjust to a new body.  We grow used to our expanders, implants or scarred chest without reconstruction, but it can be overwhelming to move on with a body that will never be the same.  I was hit with this reality two weeks ago, when I went to the pool for the first time.  I hopped into a tube for the lazy river and quickly learned that my new body would not be comfortable leaning on my chest in the oversized tube.  I had to lie on my back.  Everyone around me was laughing and relaxing but I was hit with another slap of reality...my body will never be the same.

As I’ve pondered the challenges of moving forward over the last two weeks, I have also found some positives in this part of my journey.  I find that I have an overabundance of appreciation for the smallest things in life right now.  My boys laughing together, my sweet little dog galloping across the room with a smile on her face, the sun peaking over the hill as the day begins.  Life is full of challenges, whether we are dealing with post-cancer treatment or any other trauma in life.  We owe it to ourselves to be patient and process the emotions and changes.  Only then can we begin to move on and look for the positives.  I’m thrilled to be in a better place with all of this than I was two weeks ago.  I hope you can find peace in your own journey, as well.

Thanks for reading!

Beverly McKee (The Breast Cancer Warrior)

For more information about The Breast Cancer Warrior, to follow my blog or if you know a long term (25+ year) breast cancer survivor, please visit my website at www.breastcancerwarrior.org.
You can follow me on Facebook and Twitter for the latest updates about my journey through breast cancer and the latest studies about breast cancer prevention and treatment options.
© Copyright 2012-2013  Beverly McKee. All Rights Reserved.

Remembering a Friend

Lisa in 1995

Today I have the pleasure of sharing a piece written by Lisa. I know Lisa through twitter where we both participate in the weekly #BCSM chat (BCSM = breast cancer social media). She is a lovely person and I am honored to share her moving piece with you today.

Lisa Guttman Greaves was diagnosed with cancer in both breasts in 1994 at the age of 31. Finishing treatment in 1995, she has had no evidence of disease since that time. You can connect with Lisa on Twitter at @LGG1 

Remembering a Friend 
by Lisa Guttman Greaves

Breast cancer awareness month. October. Pinktober. Reflecting on recent virtual and in-person discussions about “the culture of pink,” metastatic disease, and the meaning of survivorship has caused me to think a lot about my friend Donna. Donna died from metastatic breast cancer more than 15 years ago. I would tell you the year, but I don’t remember. Not because I didn’t love her, but because my memories from that time have no relationship to time measurement. They operate like a psychotic accordion, stretching out some notes to torturous lengths—and flattening others to bare nothingness. 

I met Donna in a breast cancer support group at the hospital where we were both being treated. We had a major bonding moment when it came to light that we suffered the same, seemingly uncommon, side effect from chemotherapy—extreme nausea while showering. Such is the stuff of friendship development in the cancer world. Some of the women in our group acted somewhat maternal toward me as a 31-year-old; Donna was probably 20 years older than me but we felt no age distance. She was someone I could always relate to and laugh with.

Donna and I grew even closer as our treatment paths took us in a similar direction. We both had very aggressive tumors with poor prognostic characteristics, and we both made the decision to follow our “standard” courses of chemotherapy with high-dose chemo with autologous stem cell rescue (AKA bone marrow transplant or BMT). The high-dose chemo is lethal enough to kill your bone marrow, disabling your body from producing new blood cells. The rescue comes by way of stem cells, in my case my very own cells that had been harvested for this purpose. 

(A note: this was in 1995, when it was largely believed, though not clinically proven, that this treatment had the best promise for staving off recurrence in certain types of breast cancer. Clinical evidence ultimately did not bear this out. I have more to say on this topic, but not in this post.)

So when I entered the three-room BMT unit at the hospital, Donna was already there. She was so awesome to me; she knew the ropes and shared all kinds of intel. I knew my incessant coughing was keeping her up every night but she never let on. Donna was a person who could be cheerful, encouraged, and encouraging in the darkest of times, which this was. Let me be clear; she wasn’t a crazy, cock-eyed optimist ignoring the reality of her cancer. She was honest and knowledgeable.

I have never felt so alone in my life, in my fear—even while supported by incredible, loving family and friends and first-rate medical care—as I felt in that BMT unit.  I was alone with my disease. And that’s when it happened.  A thing I’m ashamed of to this day.

I became jealous of Donna. I mean REALLY jealous. Wickedly jealous. She used the treadmill they brought into her room. She had moments of positivity. She welcomed her friends to come and visit her.  I went on inconsolable crying jags. I lacked the energy to watch TV. I finally believed I had cancer. I scribbled in my journal: “I have a paranoia that everyone is judging me because I’m not handling things as well as Donna. I want to be the patient that everyone says what a great job they’re doing.” I added wallowing in guilt to my plentiful and growing list of side effects. It amazes me looking back that my desire to be the “good patient” wasn’t wiped out along with everything else the toxic treatments took. 

It was only a few days later that I wrote (quoting DH Lawrence’s poem Snake): “ ‘Now I have something to expiate—a pettiness.’ Donna is going home today and I’m so happy for her. All of my horrible competitive feelings are gone." I remember the day Donna left. She came in my room and excitedly told me that you’re not allowed to vacuum for six months after getting out of the hospital; she was planning to milk that for all it was worth. We laughed about how careful we were going to have to be crossing the street because we sure as hell didn’t go through all of this just to get hit by a car leaving the hospital. She told me she was going to try to get permission from her doctor to go to Race for the Cure.

Donna was the first of my friends to die from metastatic disease.  When I went to her funeral, which was packed with friends and family sharing stories and reminiscences, I realized that as well as I knew my dear friend, there was a world separate from her cancer that I had no part of. Obviously I already knew that on some level, but seeing it in person was astonishing and kind of thrilling. Donna’s best traits were increased exponentially in her total self; I could see this mirrored in the countless people I talked to that day. I think of you, Donna, every time I play a music box.

I think of Donna, too, every time I hear someone say to me “If anyone could beat cancer, it was you” or any of those other similar things that we survivors hear from well-meaning people who don’t—or won’t—understand that that’s not how it works at all. I don’t just think of Donna. I think of all of those friends I lost in those first few years post treatment as I came to feel like a professional funeral attendee in my early 30s. I think of so many women I subsequently met and talked to after they were diagnosed. I think of my friends and community members currently living with metastatic disease.  The overwhelming offense I take at anyone ever thinking or implying that these people didn’t do enough, care enough, or be positive enough rocks the very core of my being. I know Donna would feel the same way.

 

Wednesday

At my house, Wednesday is bills night.

Every Wednesday night, faithfully, my husband sits down to pay all of our bills. We used to sit down together to pay the bills, but after the cancer diagnosis I kind of checked out. For more than a few weeks I was just too sick to sit with him. But then I just wanted to bury my head in the sand because most of the bills were my medical bills and there was a lot of sadness, frustration, and guilt wrapped up in my head when I would attempt to get back with the program.

Let's be honest. There still is. But it was time for me to jump back in, and as I said a few weeks ago, watching the Chicagonista LIVE! show about finances was the push I needed.

So, we are back to Wednesday night bills night with both adults in the house. I brought back the two spreadsheets we use to track spending and the last few weeks we have faithfully filled them out.

I still feel really unsettled when we work on it. I don't like it. But, it needs to be done. So I'm sucking it up, and jumping in.

Things aren't magically better (although, wouldn't it be nice if it worked that way?). But I think this is the first step to getting them better - tracking the money again, knowing where it is going, knowing what we can cut and what we need to spend more on, these are all really good things.

We'll see where it takes us. While I know it won't be a straight line up, I hope we can find a 2-steps forward, 1-step back, because at the end of the day, that's still forward progress!

Sharing

Phew. After yesteday, I'm pretty sure everyone knows where I stand on Pinktober. However, I do realize I'm not the only person in this world.

My story is not the only breast cancer story out there and my feelings aren't the only feelings people should have. That is why, this month, I have asked people to guest post here on the blog. I've asked them to share their stories with us - as a survivor, someone currently in treatment, as a caregiver, or a friend, or a family member. So many people have a story to share, and I'd like to take time this month to share more people's stories with you.

So watch over the course of this month as I share these posts with you! I can't wait. I'm excited about this! I hope that you enjoy it as well.

PS - do you have a story to share? I've got lots of room to share more, so leave me a comment with a way to contact you so I can share your story as well!

Pinktober!

It's that wonderful time of year! That time of year when the world looks like it has thrown up Pepto-Bismol everywhere. Ah yes, the lovely Pinktober, when the world is full of pink! And ribbons! And boobs!

Pardon me while I go and bury my head in the sand for this month. I'm over it. Guess what? I had breast cancer, I don't need to walk into my local stores and see nothing but pink to make me aware. My guess is, for most of you reading this blog (and most of America), neither do you. I've never met someone who isn't aware of breast cancer.

That's not to say, I know lots of people who aren't properly educated about breast cancer. But awareness and education are two different things. So are, frankly, awareness and action. And while all these feel good campaigns are out there to tell us that the 5 year survival rate has gone up (which is good, don't get me wrong), what they leave out is the deaths per 100,000 women has remained almost the same - in 1970, 28.4 in every 100,000 women died from breast cancer. In 2012? It was 26.1 deaths in every 100,000 women. Do you see this? Do you see? We've managed to save 2 women out of every 100,000 in 40 years.

Now, obviously this is awesome news for those 2 women. However, this is really terrible news for the other 26. Does this seem like progress to you? Are you happy with this?

Breast cancer probably gets the most attention. Especially in Ocotber, when we are inundated with messages about saving the boobs, save second base, etc, etc.

Well, pardon me while I tell you, I don't care about saving the boobs, tits, breasts, second bases, whatever name you want to call them. I want to save lives. I'm tired of pink everywhere, of boobs everywhere, all in the name of a cure that we haven't managed to find yet.

Do I seem angry? Yes. Probably because I've lost too many people to breast cancer and know too many more right now living with stage IV cancer. I've known too many people who are still dealing with side effects of treatment, who might not have cancer now, but worry about (not if) but when it will come back? Who look at their bodies and feel terrible about the scars, the implants, the lack of nipples. Who have to walk around the entire month of October and see boobs everywhere and hear about how we want to save breasts.

I believe the message started off innocently enough - bring people together, unite over a ribbon, but it seems lately it's been commercialized. Now I see products in pink with ribbons on the package, but read the fine print - the company isn't giving money to any group, they are simply making it pink, charging more, and hoping you'll feel so good about buying pink you won't notice they are pocketing all the money.

This is not to say that I am bothered by those who wear pink to support friends, family members, spouses, grandparents, mothers, daughters, sisters, aunts, etc. No. That is different - that is people coming together to show support. I love that, and I love stories about it. This is not what I'm talking about though.

I'm talking about ads with breasts and a nice little pink ribbon telling you to buy pink stuff to help the fight. Never mind the fact that they would never in a million years, allow the breasts of a breast cancer survivor to be in their ads. Because, despite the fact that many of us have implants, and people joke about how we got a boob job, our breasts are not pretty. They are not gorgeous. They'd never make the cut for an ad.

This is how October makes me feel. In talking to others, I know I'm not alone in this. {I also know some survivors embrace and love it}. I love people coming together. I love people wanting to do good in this world. I think as a society we could do this so much better - we could come together in a way where real education is shared, where actions take place, where October isn't just a month for companies to try to sell pink stuff.

That is what I dream of. That is what I long to see. Not more boobs. Not more meaningless pink stuff. Let's work on changing the mortality rate in big ways, let's work on coming together to make a big difference. I'm not sure how we do this, but I know we can.

How about you? How does Pinktober make you feel?

28.4 number in 1970

28.4 number in 1970

It was 28.4 in the same 100,000 women.

It was 28.4 in the same 100,000 women.