Your fear and pain is my disguise

Over the summer I have posted various chapters from my blog book, PTSD and Cancer:  Lost, alone and afraid.  Many people have asked me what my response has been from those who have either found my blog via Face Book or through search engine terms, ie. “googling.”  This isn’t a super stat blog but it certainly is serving it’s intended purpose.

I am receiving notes and emails from individuals thanking me for posting an honest, open and raw account of depression and cancer – Christianity, depression and cancer.  Just as I had hoped, survivors are finding through my story that what they are experiencing post-treatment is not “unnormal” and that they aren’t “going crazy.”  In reading their stories, my heart hurts for them as I relive what they share with me.  For some survivors, I wish I could hug them and hold them and let them cry and later talk, talk about what we feel we shouldn’t be talking about because “everybody tells me I should be thankful and grateful that I am cancer free.”

My continued prayer is that in a survivor’s quest to learn more about post-treatment depression they will find my blog and read my story and find the hope and peace they so desperately are looking for.  Yes, our strength comes from Christ our Savior, and in my weakness called depression He was always there whether it be through a secular counselor, a book, a web site or a cancer support group.  I really was never alone and I am here to tell you – you are really never alone.

The following chapter is what I might consider one of my most provocative chapters.  I hear often, very often, how once a patient is done with treatment their life fills with busyness, busyness to the point of distraction.  Is it better to distract yourself after treatment pushing your cancer experience behind you or should you stop yourself and reflect on what you just went through and allow the emotions to surface that you so successfully buried?

January 5, 2010mask

I didn’t think I would make an entry so soon.

As I was writing this morning, my writing revealed a truth.  I was disguising my pain and fear by “helping” other cancer patients and survivors.  I was “helping” them by listening to them and talking with them about their suffering.  I made myself available to them because, subconsciously, I desperately wanted them to answer my questions about my suffering.

Since exposing my true weakness and becoming more transparent with people, some have questioned my decision to completely drop out of “things.”  I know volunteer work places attention on others and not self.  After this morning’s journaling, I know I am in the right place by not filling my time with “things” but taking the time to explore me.

January 5, 2010

I am accepting my cancer, it did happen and it wasn’t a cold virus and over in 10 days. It was an unbelievably surreal, dreamy time in my life. I might mention that again and again as I accept this illness.

So far in a year and a half, I haven’t quite found myself. I came home from SLC a much spiritually deeper person. My one true anchor through all my treatment was my faith and hope in Jesus Christ. Once home and back into a routine, that intimacy and concentrated time was interrupted as the early morning turns into a day of activities.

The landscaping of our yard was a great distraction from having had cancer just months before. To be outside with growing strength and renewing energy, the sunshine and tackling one acre of “dirt” was a healthy challenge for me. Feeling strong and working on this project was like spitting in cancer’s face.

After my SCT, I expected to spend the first year of recovery fatigued and weak. I was shocked at how quickly I recovered and how my strength and stamina seemed to grow stronger daily. I was doing pretty well and I was feeling pretty well.

Literally, when we just finished the landscaping and we were enjoying the beauty of our labor, the flowers and shrubs, and the bounty of our labor, the cherries, I fell off the ladder and broke my leg. I had a lateral break in my tibia, my tibia plateau decompressed and I tore my ACL off of the bone. Surgery rebuilt all that was destroyed. My leg was reconstructed with plates and pins.

In all my years, I never felt such pain. It was overwhelming. And not only was it overwhelming, it was exhausting! The fatigue hit me like a Mac truck. The great majority of my healing was from the end of July to the end of October. The ache or discomfort and my limp lessened all through November and in late December, I noticed what remained was a slight limp.

This accident and recovery distracted me from my cancer. My thought and energy was on my leg. Toward the end of my healing, I began to spend more and more time thinking about my cancer.

I was in complete remission and my leg was better so I began to focus my attention on other people who had cancer – I had this driving passion to help them.  I met with cancer patient/survivors personally.  Most often they wanted to hear about my experience. I also attended our cancer support group and actively contributed to our discussions.

If I couldn’t physically be with people, I participated in on line discussion forums and I volunteered to be a telephone mentor through the Bone Marrow Unit at Huntsman. I was distracting myself again, all my thought and energy was expended on other people. It was an odd time and one I am now exploring.

I think I was superimposing my fear and pain on to others by disguising it as “helping” them get through their fear and pain.  In an odd way, I wanted them to answer my questions about me.  I wanted to ask them three questions. One, if the cancer recurred how would you determine what action to take? Another type of chemotherapy that makes you feel sick and crappy or another form of treatment? How would you choose quality of life verses quantity of life? Dying more quickly and naturally or a prolonged death being kept alive by drugs and transfusions? Two, how/when do you know enough is enough? (kind of the same as one) And three, discuss the reality of death and dying. I thought I was being helpful to them but really this was all about me, me and my curiosity and my grasping for answers to these questions.

I believe before my anxiety and stress manifested, I was becoming more and more obsessed with these issues and perhaps even a little manipulative with others. I wanted to make my problem their problem, I wanted them to answer my questions. I wanted answers and really nobody could give me answers. As my frustration grew, my doubt grew; I began to feel guilty and I felt ashamed. I realized I was not as strong as I thought I was and I had not overcome the psychological aftermath but was feeling the vortex pull me down again. I wanted answers but nobody could give me answers.

Why, after a year and a half was I still suffering? Shouldn’t I have overcome all of this by now? Does anybody else struggle like me? Do they think of these things? Doesn’t anybody talk honestly and openly about these issues or do we always have the “hope” that possibly some new drug will come along to save us? Stupid questions, selfish questions especially when there are women I know dying from cancer. Stupid, selfish questions – I should be grateful I am alive and in complete remission.

And I broke. I am not strong, but I am broken and afraid. I hurt and there is this deep, deep pain hiding in me.

 

Childhood cancer and Post Traumatic Stress Disorder

In December, I wrote an article highlighting the courage of a popular pastor’s account of his young daughter’s sudden and unexpected death.  That article is my all time most popular – and, even though I write about cancer, at least little Lenya’s story directs readers to my blog and perhaps they will take a mental note that somewhere in the great blogging sphere there is a blog about Christians and cancer.

WordPress keeps daily statistics of the number of readers, what country they are from, what search engine terms they use to search on-line on a specific topic and how many hits that one topic receives; that’s why I know Lenya’s story is my most popular.

Another search engine term that is popping up more and more is childhood cancer.  I am pleased that my blog can be a source of information for parents of children with cancer.

I can not feel the emotion of parents with children suffering from cancer nor understand their guarded hearts that bounce from hope to despair probably on a weekly basis, maybe even daily.  (Hourly?)  I can not even begin to know the unspoken thoughts as parents snuggle up to their little one as she sleeps night after night in the overwhelmingly large hospital bed . . . talk about a feeling of helplessness . . .

I introduced little emilyannelove last year.  She is the little girl that was diagnosed with childhood leukemia before she was even two years old.  She has done well and is doing well.  However, even in doing well there are setbacks that can happen and have happened to little Emily.  As of this writing, the doctors are still testing her for the bacterial infection that caused her to go into septic shock.  She is in the hospital, today is day 7.  The doctors will keep her there until they find the specific infection in order to create the correct antibiotic cocktail to knock this bug out.

little Emily back in the big hospital bed

little Emily back in the big hospital bed

Chrissie, Emily’s mom, made an entry in her blog on March 31, 2013.   Chrissie was sharing how well Emily is doing, her continued chemotherapy maintenance and how family life is returning to “normal.”  But she finished that one paragraph with a sentence that made my heart ache for her.  “I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal.”  Chrissie hasn’t written that entry yet.

This summer I started writing about Post Traumatic Stress Disorder and Cancer, PTSD for short.  I am sharing my story of PTSD and cancer and how lost, alone and afraid I was.  (click here to read my blog book, PTSD and Cancer: Lost, alone and afraid.)

I am taking a break from  my story because Chrissie’s sentence has been sitting in the back of my mind since March.  Earlier this month, another mother of a young daughter with leukemia, ALL, wrote an entry that leaves a heavy weight on my heart, too.

HealingMaya is a well written, raw account of Maya’s journey with cancer.  The story tugs at my heart because it is really more of the mother’s story in watching and caretaking her daughter through cancer.  Fortunately, Maya is in the maintenance phase but that doesn’t mean a mother’s worry is over; now the worry changes into wondering what the future will bring.

PTSDThese two stories, the moms’ unanswered questions and fear for their daughter’s future motivates me to dig into researching and understanding PTSD and childhood cancer.  Can a young child have PTSD?  Or is a parent of a child more apt to suffer from PTSD?

My research and resource findings will follow shortly . . .

 

 

Sorting it out and something called “Yards of Patience”

I feel this is an important chapter in my book, PTSD and Cancer: Lost, alone and afraid.  I often hear survivors living an overwhelmingly busy schedule in order to avoid the emotional and mental pain post-treatment for cancer.  Is this the healthy thing to do?  Read on for my story . . .

yards

December 30, 2009

“Sorting things out”; that’s what I am doing right now, sorting things out.

Cancer, stunner. Treatment, focused. Transplant, necessary. Recovery, distracted. Today, sorting things out.

(You know, even a year ago I wasn’t done with my treatments. I started radiation nearly a year ago in February.)

Lately, I received some wonderful, compassionate emails. As I replied to them, I found myself writing long letters. The words just poured out of me; I didn’t realize the depth of my pain.

As I wrote about one memory, I was unaware how deeply it affected me – my emotions rose to the surface.

“Recently, I realized I was terrified of my transplant. When the nurses handed me this two inch thick notebook of what could happen, what to expect and how to live once released from the hospital, followed by a lecture and tour of the unit, I knew what I was about to do was tentative but I had to do it to give myself the best chance to live. I buried the fear. My gosh, I literally moved into my hospital room not knowing how long I would stay there. When a larger room opened up on the wing (I don’t remember how many days into my transplant I was), I moved into it and  this larger room had flies in it and flies carry germs and I was supposed to be in a germ-free, controlled environment – the flies were a potential death warrant. (I could cry right now remembering that)”

The emotion sat inside all day. I never acknowledged the fear those flies created in me. Last night while sitting in the car waiting for Dale to pick up a pizza, I said out loud to no one, “Those flies weren’t supposed to be in my room.” And I cried. They weren’t supposed to be in my room . . .

Other memories surfaced – I am surprised by all of this.

I wrote Erin at Cancer Care today. Her letter confirms my decision to bow out of my responsibilities and she asks a question:

“Is there something you are trying to avoid by distracting yourself so thoroughly (to the point of exhaustion I might add). Sometimes this can be a way to sublimate some of the very intense feelings that come along with remembering the traumatic memories associated with your cancer.”

Being the personality I am, I sat quietly on that question. What am I suppressing? And the door opened . . .

“Hi Cyndi,

It’s good to hear from you personally and thank you for sharing all that you’ve shared. I’m so sorry that you’re having such a rough time right now and I do want to first let you know that many of the emotions you described are absolutely a normal part of the survivorship/post treatment process and phase. You have been through so much, physically, mentally, emotionally and I can hear you trying to wrap your mind around all of this, which is important to your recovery, but can be gut wrenching and tiresome. But this is something that will be a process and answers may take some time to develop- you are doing a wonderful job of exploring and trying to make sense of it all (I love the antonyms by the way- I hope it was helpful to try to define some of your feelings). You also are asking some very meaningful questions, some of which I think you will find can be further explored and mirrored within the group space, but some of the more specific questions about self-esteem, life direction and purpose may be best navigated with the help of a counselor or a social worker who can help you to work through some of this individually and directly. I can send you some local resources if you would like to pursue this route, Cyndi. How does that sound?

Here is a link to an impactful article from the Oral Cancer Foundation which I thought might resonate for you and help you to further understand some of your own feelings and reactions: http://oralcancerfoundation.org/emotional/survivors_1.htm. In addition to this I have attached an article (PDF) about a survivorship program called REACH- it also discusses some of the challenges of survivorship.

I hope this message reaches you well and please let me know if you’d like those individual resources and I will send them along. “See” you in the group space!

Warmly,
Erin Columbus, LMSW
Program Coordinator of Online Client Service
Cancer Care

 (The letter above was a personal email from Erin; this second one was on the group discussion board.)

Cyndi, you bring up a salient point in the midst of a very busy and pressure filled time of year. It sounds like you are cognizant of the fact that you are trying to do way too much this year, but not exactly sure why…. I wonder if you might sit and reflect with us for a few moments about that? Is there something you are trying to avoid by distracting yourself so thoroughly (to the point of exhaustion I might add). Sometimes this can be a way to sublimate some of the very intense feelings that come along with remembering the traumatic memories associated with your cancer. For now, I would strongly urge you to be good to yourself and to nurture your spirit- you are still very much recovering from the pain and trauma of your experience (this is completely normal by the way) and it is more important now more than ever to be nurturing, kind and patient with yourself, first and foremost. Be mindful before saying yes to anything. It is okay to say no, especially if it is something that is not realistic for you. In fact, it’s imperative. You also ask a salient question amidst all of this: “Who am I and what am I to do with myself?” That is a very good place to start and please, remember; this is a process, not an answer that will come to you in a flash of genius- something that slowly develops over time, along with yards of patience, reflection, exploration….”

 “Yards of patience . . .” how about that?

It is a relief to be told this will take a while to sort out.

I asked Erin to refer me to a qualified therapist in our area; being a smaller city I hope there is one here. I also found her link (above) to an article very validating, there is a section on post-traumatic stress disorder. The article recommends cognitive behavioral therapy.

It is the beginning of Book III.  I think once I allow myself to really look back at what happened and feel the pain and fear, I will start to balance back over to normal. It’s like a teeter totter, I’m either up or down and I need to get back to the middle!