Understanding Survivors – guest post

Today’s offering is by Hope who writes at the creatively-titled blog Dancing In Limbo.   Some bloggers  succeed in poetry with just their “About me” paragraph.  Hope, you had me at “profoundly blessed…”  Profoundly blessed by this journey we call life.
Cancer touched my life September 29, 1997. Non-Hodgkins Lymphoma, Classified: Small Lymphocytic Lymphoma, stage4. I was told if I made to that Christmas I would be lucky. This was was the day I starting living with this huge elephant in the room called cancer. However life hands us many things in life and as hard as that day was.It was also the date of my 19th anniversary to my husband.
So that said in life good and bad happens. I have see them all in one day!
Life is good. And its all about the journey and the blessings that come with it.

Always, Always, Hope

Understanding Survivors.

Cancer is a funny thing…Strange and really robs us of what is normal for us. In talking to several survivors lately. Though I have lymphoma most of my surgeries were pertaining to the head and neck. Which makes me rare in that I had wide spread disease but it was not fun till Exploratory surgery to my face and the masses there.
There have been many changes in my life due to that.
Non Hodgkin’s Lymphoma being a blood cancer , it can reside in any area of the body. It’s a scary thing to know that. NHL is manly diseases in one that can intermingle and cause issues.
Some say I am the same as I was prior to all of this. I have argued the point that cancer has changed everything. But its not worth it. People that do not have cancer don’t understand a percentage of them. Being told to get over the experience that was so life altering. Is plain rude.
I have had it will trying to explain the live altering issues with people who have been told over and over about it.
In some ways I am the same but in many ways oh so very different. I also know I am so much stronger then I ever even thought possible. This experience for me has been empowering in many ways as well.
In talking to others who are Survivors as well over the past 12 yrs or so. I have realize we are a select community of people. We are card holders to a club no one cares to belong to. NO one takes the card back once your in Remission. Remission means your disease is inactive that’s that’s basically it. But your doctor does not wave a magic wand over us and all the side effect from surgeries treatments all of just go away. I wish that was true. Once they tell you , your a cancer patient your in it for the long haul . In stable condition and in remission. You stay vigilant in hopes to keep cancer at bay. Check Ups…help us stay on top of things in hopes if it comes back and active . We can nail the hell out of it and kick it back again.
Been there done that three times.
So I guess what am trying to say is there are times that I am really dancing in limbo. Anything new comes up and its…geesh I wonder is it the cancer. I stub my toe and good Lord the cancer is back. As much as I would love to say it goes away what we feel . It doesn’t but everyone copes in a different way with the cancer situation. No two people are exactly alike.
The other issue for me is someone I know read that NHL is the good cancer to get. Now I am here to say after five years on and off of treatment and stage 4 disease. It is not a good cancer at all. Easier to treat yes but not good. Why the hell do people think that?? Why do Doctors tell patients it would be better to have Lymphoma verses such and such cancer??? Then I have to hear that…and others who know darn well NHL and HL both stink No matter what type it is its still cancer.
I am one of the lucky ones and this I know for a fact. But the journey had been long and hard. There are days where cancer is easy to forget and other days are really really tough. Long term issues are a real hassle and to be honest. I don’t bring them up any more due to…people looking up at me like I have 4 heads. To them its done and over with. Sadly the stigmas with cancer never cease to amaze me

I wanted to update this journal. And listed it as a Living Journal. Because even with Cancer life has a way of moving forward. We live life to the fullest daily and hope and pray things stay as good as they are.

~ Dancing In Limbo

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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.

Comments

Understanding Survivors – guest post — 1 Comment

  1. Thanks Dennis,I have been away and recovering from surgery for several different things including Skin Cancer. I stopped in to look at my blog and seeing your comment. So thanks..Will be blogging more in the future.

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