ChemoBabe’s Hard Time – guest post

This is a really creative site by a self-described social scientist and stage 3 breast cancer survivor.  Great graphics and great writing.  She even sells Chemobabe t-shirts, sweatshirts, mugs and mousepads.  Check it out at ChemoBabe!

Hard Time

Last month, a work friend told me about a gossipy lunch conversation she took part in. Some colleagues were sizing up the real life skills of the research professors in our department, predicting which of us would survive hard time in prison.

Smiling, she told me, “We decided you would make it. You have the skills.”

She knew it was an odd compliment, and we had a good laugh about it. Of course, I hope we never find out if they put their money on the right horse in that race.

I know that her praise was, in part, a nod to coping skills I trucked out this past year. Cancer treatment is definitely hard time.

I suffered a lot. I hated it. But I was a pretty kickass cancer patient. I knew how to stay on top of stuff, chase down information, use my resources, and persevere.

And of course I got by with more than a little help from all of you. So thanks for that.

But now I am entering new waters.

Although diagnosis is a process, there is usually a clear moment when you hear the words, “You have cancer.” There is a distinct Before and After that you can turn over in your mind, the moment where everything changes. You slip into an alternate reality and must make your way through.

Survivorship does not have such a clear beginning. There are those who believe you are a survivor from the moment you are diagnosed.

For me, survivorship came in phases. I first felt like a survivor when the Big Treatment (chemo, surgery, radiation) was over and I had the first strange sealegged experience. Then, with my last infusion in November, I was no longer doing anything medical to fight any lingering cancer cells that may not have read my very passionate eviction notice. Finally, two weeks ago, I had a medical apparatus — my port — removed from my body.

Cancer survivors often flash each other their port scars. It’s our version of a secret handshake.

I have a scar now where the port used to be. The Survivor Ship has set sail.

So now what?

I am still tired. My body is different. I have signs of PTSD. Havoc has been wrecked in many parts of my life.

Now that the hard time is over, am I supposed to pick up where I left off?

It’s not possible. Too much has changed since I first heard those words, “You have cancer.”

So today, I went to my cancer center’s survivorship clinic. I spent half an hour this past weekend filling out a few surveys designed to assess psychological, social, and medical issues.

I met with a social worker and a nurse for a total of three hours, which is a luxurious eternity in the medical world. Both were wonderful. They educated me in a way that attended to my particular situation. It has already helped alleviate my anxiety. The nurse produced this beautiful two-page summary of my diagnosis and treatment that I will have to give to all my future doctors. She discussed all the possible late effects of my treatment and how I should plan to monitor and manage them. And she said the priceless words, “You are healing very well.”

The social worker is the first counselor-type person I’ve met with since my diagnosis who I could talk to honestly. I saw two other therapists during my treatment, but neither had an oncology specialty. I felt like I was having to educate them too much, so I quit counseling as an energy preservation measure.

This social worker, it turns out, is herself is a survivor.

I spoke with her at length. My takeaway was this. During treatment, survival took one set of coping skills that could be best described as rallying: my friends,  myself, my family. Treatment is about continually picking yourself up and moving forward.

After treatment, survival looks different. From what I gather, it’s more about waiting and acceptance, letting things heal, letting time pass, and allowing your new self to unfold.

I am a problem solver. I am happiest with something to do. I imagine that it’s my capacity to rally that led my colleagues to imagine me as a successful hard time prisoner.

Like my cancer treatment, most jail sentences have a beginning and an end.

Being a survivor, however, is a life sentence.

It seems like there’s a lot of waiting. Waiting, waiting, waiting…

I don’t know how I’ll cultivate the coping skills for that.

from – ChemoBabe!

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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