Mantle cell lymphoma, 5 year mark and “Get out of jail” card

I haven’t written for a while. The first reason is my daughter married in January. It was a glorious wedding and Carrie and Brandon’s special day was more than any mother could dream of or ask for.

Carrie’s wedding was a milestone for me. When I was first diagnosed with cancer my immediate thought was I want to see my children marry and I want see my grandbabies born. Indeed, this was an answer to my prayers and a celebratory event in more ways than one! I shed a few tears and thanked God for this blessing as I witnessed my grown daughter and her new husband exchange their covenantal vows.

mom n carrie on wedding

The other reason is the closer I get to my five year diagnose anniversary I find I am experiencing odd emotions. I remember hearing from the medical community that the five year mark is a BIG one. For some types of cancer, if you pass the five year mark cancer free, you are considered cured. So I would assume those who had those types of cancers, the five year markgetoutofjail means everything to them. It is probably like a “get out of jail” card – and the hugest sigh of relief heard around the globe.

I was told my cancer, mantle cell lymphoma, is not curable but as the years pass by cancer free, the more unlikely my cancer will return. My primary oncologist, Dr. Glenn, would pride in herself in telling me during my treatment and a few years post treatment, that not one of her patients relapsed who had the same treatment protocol as I did. That was comforting and encouraging but in having cancer and a difficult psychological recovery, hard to accept as true for me. But now I am beginning to wonder . . . could I possibly remain cancer free the rest of my life?

My cancer journey brought about an amazing life change – for the good. I can think of only a few who psychologically suffered as much as I did (or people aren’t sharing with us their true mental and emotional struggles post cancer) but through the suffering and then adjusting to the fact I had cancer followed by accepting the fact I had cancer, who I was prior to cancer changed into a better person in every way. And, funny, the work continues . . . and that’s probably why I am having these odd emotions as I approach the five year date.

Being told you have cancer is traumatic enough, but being told you have an incurable cancer screams death may come soon. And then going through treatment with all this toxic stuff being pumped directly into my heart, a bizillion blood draws, a trillion PET/CT scans, viruses of unknown origin, administering daily neupogen shots, the fear of an infected port line, blood transfusions and platelet transfusions, the fear of pneumonia, having radioactive isotopes dripped into my body, facing a stem cell transplant and denying the extreme seriousness of this transplant, being told by someone this is critically serious and I could die, terrible mouth sores and gut sores, hallucinations . . . oh, I’ll stop there as I could go on and on.

But I survived! I survived all that to only find myself in a very deep, dark depression that seemed to last for a very long time. I never thought a time would come that I wouldn’t find myself thinking every dee dang day about my cancer. I never thought a day would come when I wouldn’t think about relapse and so I waited for it. I would read from survivors, “Cancer doesn’t define me.” What? Cancer defines every inch of my life down to the nucleus of every cell. That statement infuriated me!

But with the help of some counseling and the bedrock of my faith, I came out of my depression and began to move forward. Instead of thinking and planning only three months out, I began planning six months ahead and then I found myself thinking a year from now. And then I realized I didn’t think about cancer every day or even for a few days. As research progressed in the short time from my diagnose, mantle cell may never be cured but the cancer can be maintained by a new generation of drugs; knowing this alleviated my fear of recurrence and death no longer screamed at me..

So where did all this bad news go? I lived with a “bad” outlook for years after my treatment. I waited for the 60-70% non-cure rate to manifest in my life. I was hyper-vigilant and wary, I submerged myself into the cancer world reading everything I could. I advocated and mentored. I empathized and shared people’s fear and sorrow. Always thinking it will soon come back – but it didn’t, it hasn’t.

While in-patient at Huntsman, living there for either a 5 day or 7 day stint, the nursing staff became my life line. I got to know the patients who shared the same treatment schedule. I saw parents and children of those who were being treated. I listened to Jason’s plans of summer camping once his treatment was finished. I saw a family come daily to be with their wife and mother. Jason died, the wife and mother died. I walked the halls to exercise my sedentary body. I was there in the heat of summer and I was there at the first snowfall.

That life was so in my face, hyper-colored and five senses; it was intense and driven, laser focused and unreally real. And now? I am moving further and further away from that life. And that is it. That fight or die existence is becoming a distant memory; all those emotions are becoming fuzzy. How do I incorporate that life and my almost extended five year mark life?

. . . conclusion following . . .

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6 comments on “Mantle cell lymphoma, 5 year mark and “Get out of jail” card

  1. Hi there, I just came across your blog and it has helped me so much. I was diagnosed with MCL in December 2012 and have spent most of this year being treated, including the infamous and very unpleasant stem cell transplant. I am now finally getting my strength back but find I am suffering periods of depression too, and somehow expecting the cancer to come back, although I have managed a really positive outlook all the way through treatment. I didn’t expect to feel this way, so reading your words has been such a help. I am writing my own experiences at margaretcahill.wordpress.com.

    Thank you for sharing your story so open-heartedly and congratulations on reaching the five year mark. You can’t believe how much hope that gives me.
    Warm wishes, Margaret

    • Cyndi Heath says:

      It is a joy and encouragement to hear from you, Margaret. I never know who reads my blog; my hope and goal is if my story encourages just one person, then I’ve paid it forward, so to speak.

      I wrote so openly and honestly to let others know they are NORMAL should they suffer bouts of depression after having cancer. What I found interesting in my research is that those who have undergone a stem cell transplant have a greater tendency to suffer with depression.

      So let me say, you are NORMAL! You are not alone in this post journey as I and others have gone before you!

      Many Blessings and to a long life!
      Cyndi

      • Ah thank you! It is good to know about the depression – I really hadn’t expected that. Life post-transplant is very much like being cast adrift only in a different sea. All the landmarks have changed. Like you, I am much changed by the experience; it has opened the way for a lot of soul searching and introspection, which is where writing the blog has been so cathartic. I look forward to following more of the links on yours!
        Sending blessings in return!
        Margaret

  2. Wonderful blog!
    I am so happy you are passing milestones enroute to 5 years! I have 4 years to go with one and only 2.5yr with my other cancer. SCCA explained to me that the “5 yr” mark is used by most insurance companies in how they weigh in cancer for their acceptance & premium formulas.

  3. Andrew says:

    Wonderful reflections and sharing, and yes, congratulations at the five-year mark. I also find the transition between thinking three-months out, then six-months, and then eventually just living, enjoying and appreciating life to be a moving one. Best wishes and look forward to your further reflections.

  4. It is a curious journey, friend. I await your further thoughts. I’m so glad you are well and are moving forward with your future. You know my heart is with you in this post. I still have a difficult with my emotions or lack therein.

    Also glad for the wedding of your daughter. I know this was a blessing to your soul!

    peace~elaine

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