Three different Cyndis

The following is a chapter from my blog book, PTSD and Cancer: Lost, alone and afraid.  After treatment for cancer, I was confused and lost and looking for my new identity as a survivor.

December 26, 2009

I am about to write again.  I feel alone in my thoughts and struggles in adjusting to and accepting my cancer – there are very few who know my secret fears and I am thankful I at least have them.

In these recent weeks, I experienced my first “flashbacks.”  Memories pop into my head; me before cancer, during cancer and this last year of recovery.  I didn’t know what to do with them. I thought it was best to hide them from all I love dearly but the stress of pretending to be well mentally and emotionally was like the weight of an elephant sitting on my chest and I was caving in.

Through Cancer Care, a web site service, I was encouraged by a social worker to slow down and allow myself to find the pain of my torment.  My over commitment and over busyness was a symptom of something churning inside me, a pain and loss I was running away from.

So, if you are happy to hear my diagnose that I am in complete remission and want to leave my history there, then you have my blessing to uncheck the box to receive my Caring Bridge blog. I am about to delve into my sorrow and my loss; it is a time for me to grieve and heal.

Caring Bridge has been and is an outlet for me, a therapeutic outlet.  It was my life line all during my treatment and writing helped keep me sane.  I can’t hide what has built and continues to build inside of me any longer.  Dale said I should go back to journaling on Caring Bridge because there may be one other person who reads my posts and they might be strengthened in their life or encouraged that they need not go at it alone – hiding and suffering in their aloneness like I am.

I feel like my treatment phase was Book I.  Book II was my release from the hospital and coming home and being caught off guard by the psychological aftermath of cancer.  Perhaps this is Book III, my story of accepting and adjusting to living with cancer in remission and finally allowing myself to recall and relive my suffering and pain and fear.  I valiantly tolerated the chemo and kept a great attitude all through treatment. However, I was terrified of my transplant, scared to death, if you will.

Here is my first entry and may my complete healing begin.

Yesterday, Christmas day, during a quiet moment, I compared the three Cyndi’s from the last three Christmases.   Christmas past is locked into my memory like photos in a photo album; the pictures are reminders of times past, little historical markers of one’s life.  Yesterday I looked at my “photo album.”

I have a picture of myself from Christmas ’07 sitting at the dining table with my family after dinner. We were so us, predictably us with a predictable life; very happy, indeed.  Little did I know, my life was about to drastically change . . . I had four more months of a “normal” and routine life.  In that Christmas picture, my lymph system and my bone marrow were full of cancer.  Snap this photo, snap that photo; posing with the family, innocently unaware  . . .  photos taken of a Cyndi that will never experience blissful innocence again.  I grieved for her.

Christmas 2007

Christmas ’08.  Sweet, blessed relief I made it through all my treatments!  I was home in our newly built house, spending Christmas with my husband and children and extended family.  I was home.  With the relief of cancer behind me and the joy of the Christmas season, there was no time to think about what the last 7 1/2 months was all about.  I was skinny, I was smiling, and I was with my family – that’s all that mattered.

Christmas 2008

This Christmas ’09, I find myself in need of safety and security.  I tried to walk with long strides of confidence like I used to but I am finding my steps are small and I would much rather walk within my house and all that is familiar than to go out in that big world and exclaim, “Ta dah!  Here I am!”  No, I did that once and it deceived me; what you think is forever changed too quickly, it’s not safe out there.

Christmas 2009

It is time to grieve again.  It is time to say good-bye to Cyndi of ’07.  I tried so hard in these recent months to be just like her and I can’t, I am changed – I may look like the same person to family and friends, they see and remember Cyndi of ’07. But cancer invaded my body and it also invaded my mind and emotion; what used to be is no longer.

As I grieve and allow myself to walk through this process, the timid Cyndi of ’09 will heal mentally and emotionally.  Who will this healed Cyndi be?  Hopefully, I will listen and be an encourager.  I will have a new strength to share with others and give back to those who have walked with me through this time as I am accepting myself, adjusting to my new self and a little shifting of life goals.

I ended my quiet time thinking about my family and my extended family, those I was about to share Christmas dinner with.  The foundation I stand on is my faith, my husband is my pillar, my children are my joy and hope for my future and my extended family encircles me giving me that protection and safety I feel I need right now.  The safety and security of my family; those I am so very thankful for. . .

My book ~ PTSD and Cancer: Lost, alone and afraid

I was sinking.  Shouldn’t I feel elated I was in complete remission?  Shouldn’t I be grateful?  I beat cancer!  Why can’t I put it behind me?  Why am I not happy?  What is wrong with me?  I feel like I am going crazy!  Can somebody tell me I am okay, normal?  Is this normal?

This confusion wasn’t just a few months post treatment, this confusion went on for two years and four months!  Two years! and four months!  Never have I slipped so deeply into depression, never have I wrestled with such darkness – and the worst of it, I was a Christian.  I was ashamed I couldn’t make Jesus enough.

I knew He was the Healer, the Way, our Comfort.  I knew we were made strong in our weakness, I knew about “running the race” and I knew how to pray but why, oh, why couldn’t I get on top of these emotions?  Why was I questioning mortality when I knew heaven is my home?  I was ashamed, ashamed and alone; lost as a person and lost in purpose.  And silently I  pleaded, “please, someone, help me!”

Dear Brother or Sister, have you felt this way?  Dear cancer patient/survivor, have you felt this way?  Do you feel this way?  Please read my story; let me tell you and assure you you are normal after a traumatic event called CANCER.

I was diagnosed with cancer April 24, 2008.  My cancer was non-hodgkin lymphoma, mantle cell lymphoma to be exact.  I was told this is a rare cancer and non-curable.  I was told I had a 60% chance of recurrence.  I went through nine months of treatment.  I had every kind of treatment but surgery.

Through a web site called Caring Bridge, I kept a daily journal of my experience and after nearly four years of writing, I had over 35,500 hits  to my blog.  People from every decade of my life read my daily accounts of the ins and outs of treatment and hospital life.  Followers encouraged me to write a book but I found that many survivors write books about their experience and there was nothing more I could add, I thought everything had  pretty much been said.  However . . . there is a story in my journey that may benefit cancer survivors, my story about Post Traumatic Stress Disorder.

What is PTSD?  We equate PTSD with the military when they return to civilian life.  Some men and women may experience extreme and debilitating anxiety after witnessing or being a part of  a traumatic event while serving.  But can others be diagnosed with PTSD?  What are the symptoms?  When should we get help?  Is there help?

For some of us cancer was a traumatic event; an event that was out of our control and left us feeling helpless, and others of us, despairing.

Mayo Clinic’s criteria for post-traumatic stress disorder include:

• You experienced or witnessed an event that involved death or serious injury, or the threat of death or serious injury
• Your response to the event involved intense fear, horror or a sense of helplessness
• You relive experiences of the event, such as having distressing images and memories, upsetting dreams, flashbacks or even physical reactions
• You try to avoid situations or things that remind you of the traumatic event or feel a sense of emotional numbness
• You feel as if you’re constantly on guard or alert for signs of danger, which may make it difficult to sleep or concentrate
• Your symptoms last longer than one month
• The symptoms cause significant distress in your life or interfere with your ability to go about your normal daily tasks

My PTSD story is my “book”.  I read through my Caring Bridge journal and copied the pages that best describe my descent into an anxiety that temporarily halted my life.  An anxiety that resulted from a life-threatening, out of control sense of helplessness.  An anxiety that brought on sudden rage expressed by hitting myself and throwing things and flashbacks resulting in soul-wrenching sobbing.  An anxiety that isolated me to the safety of my home and to socialize only with those whom I trusted.  An anxiety and lostness that lasted for two years and four months.

Fortunately, my faith in Christ was strong enough and sure enough to keep me from questioning the purpose of my cancer.  I can unequivocally say I was never angry at God and tried hard to focus forward knowing one day I would share my story and bring to those, who like me, are looking for someone to tell them they are normal as they experience wildly swinging emotions post cancer.  And for someone to tell them, this too will pass.

Click on Table of Contents to start reading PTSD and Cancer: Lost, alone and afraid.

Mantle Cell Lymphoma Survivor – and you can be one, too

If you searched on Google for information regarding cancer, specifically mantle cell lymphoma, please read this article.  

In April 2008, I was diagnosed with mantle cell lymphoma. This was a complete surprise as I was a conscientious woman concerning my health and I exercised regularly. I never thought I would be a candidate for cancer! (read my complete story – here)

I went to the internet to learn more about this cancer but what I read concerning mantle cell lymphoma was bleak.  The reports were dismal as far as the odds of beating this disease.  I want you to know that if you went to the internet to learn more about MCL, don’t be discouraged or frightened, the news is actually more hopeful than those articles.

I started chemotherapy May 5, 2008.  I felt like I was on the fast track and all I could say to my oncologist was “Yes” to anything and everything she suggested.  What did I know about this cancer called lymphoma?  So my chemotherapy journey began in May and ended in September.  After a six week “rest” of numerous appointments and tests, in November I was admitted into the hospital for my autologous stem cell transplant.  At my 100 day post transplant, February 2009, my bone marrow transplant doctor told me the good news that I was cancer free.  And he felt confident enough to say “forever.”

I chose to go to a research hospital for my treatment.  I went to Huntsman Cancer Hospital in Salt Lake City, Utah.  My oncologist, Dr. Martha Glenn, was a specialist in blood cancers, hematology.  My personal opinion is mantle cell needs a specialist’s diagnose and treatment.  They are up to date with the ongoing MCL research and generally will prescribe a protocol modeled after one of the top research hospitals.

My treatment was researched and developed by MD Anderson, Texas.  I had six cycles of AB rituximab hyper-CVAD, a very aggressive chemotherapy regime.  I did well, as expected.  I don’t know if any chemotherapy goes as planned, I think most every patient has glitches along the way, some minor and some not so minor.  As each cycle went by, I felt weaker and weaker.  I actually got a little frustrated with my lack of energy and ability to accomplish anything.  

In preparation for my transplant, a PET/CT scan revealed I was not 100% responsive to my chemotherapy.  After a board of oncologists discussed my case, it was decided that BEXXAR, a radioimmunotherapy, would be prescribed followed by 17 rounds of radiation once I was released to go home after my transplant.

This month, March 2013, I had my nearly five year since diagnose appointment with my oncologist.  At this point, my only test is a full blood panel.  Dr. Glenn said as each year goes by post treatment, the less chance I have of my cancer returning.  As a matter of fact, during my first year appointments she would tell me in her five years of using my type of treatment protocol, it has not failed but for one patient.  As time has passed, she told me again at this appointment, now in ten years of prescribing R hyper-CVAD her record stands, only one patient relapsed.

Dr. Glenn was so pleased with me and my test results that she believes I am cured.  That word “cured” is not used very often in the MCL world and is debated among the oncologists but with Dr. Glenn’s optimism, I will believe I am cured.

Mantle cell lymphoma is not a cancer to fool around with.  In my years as a survivor I have kept up to date with the research and data surrounding MCL.  We have some highly intelligent MCL doctors that are unrelenting in their research looking for the cure to our cancer.  In the five years since my diagnose, research has discovered new drugs that are less toxic and easier on the body.  Many of these drugs are in clinical trial.  The doctors seem to think in the near future years MCL can be cured.  In my reading, MCL is a maintainable disease and some oncologists have even called it a chronic disease.

In being cautious, all of us will not have my type of treatment.  The oncologist must consider age and health factor at diagnose.  With this in consideration, they will prescribe the chemotherapy treatment most effective and least life threatening to the patient.  I met a man who was about my age diagnosed with MCL.  He was a smoker and his tests revealed he couldn’t handle my specific treatment, it had to be modified for his situation.

Also in my reading, not all doctors prescribe the same treatment regime; there are chemotherapy options available and one doctor may favor one over another.  To me this is very interesting.  

On my right side bar of this blog, I have a link to another mantle cell lymphoma blog, My Adventures With Mantle Cell Lymphoma.  Click here to read Rich Franco’s blog.  He, too, was diagnosed in 2008 and volunteered to participate in a Phase I clinical trial with Dr. Goy from John Theurer Cancer Center, Hackensack, NJ.  I asked Rich the following question about his treatment and the following is his response.

“Question 1. It appears you volunteered for clinical trial for initial treatment. Is it wrong to say the trial combination chemo didn’t work?

Answer 1. I did participate in a trial the first time as well. It was: Phase I study bortezomib (VELCADE) plus rituximab-hyperCVAD alternating with bortezomib plus rituximab-high dose methotrexate/cytarabine in patients with untreated aggressive mantle cell lymphoma.

In all honesty I never had the expectation that this would be a cure. As a matter of fact Dr. Goy was very clear with me that it wasn’t. His goal was to get me in remission for an extended period of time and when my MCL did come back there would be such great medical advancements made that I would be a breeze to treat. I had been in remission for over 4 years and it does appear that Dr. Goy’s prediction of medical advances seems very promising. Would it have been better to be in remission for 10 years versus 4? Of course! But it is what it is and I am ready to do whatever I need to do.”  (highlight is mine)

So for your research in finding any positive information regarding mantle cell lymphoma I hope this article has helped you in some way.

Again, we may be prescribed different treatment regimes and we may respond just as differently to our personalized chemotherapy but there is a point to be made – MCL is not a hopeless cancer.  As my doctor said to me, “You had the kitchen sink thrown at you and because of that, you are cured.” 

With a little research on the internet you can find the names of the nationally and world renowned doctors treating mantle cell lymphoma.  Many of these doctors are associated with research hospitals and are working on finding the cure for our cancer.

I recommend the following online services and forums for more information and other patient/survivor stories, discussions and questions.  I particularly like the ACOR.  ACOR is a forum for MCL patient/survivors and caregivers in various stages of our disease.  This group is highly informative and discuss the latest clinical trials and new drugs available. 

ACOR, Association of Cancer Online Resources –  http://acor.org

Leukemia and Lymphoma Society  –   http://www.lls.org/

Lymphomation  –  http://www.lymphomation.org

Lymphoma Research Foundation  –  http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6296735