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, 2010

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.

 

Mesothelioma – Be Aware!!

This article is in memory of two men who died within six months of each other from Mesothelioma.  Both men were exposed to asbestos at some point in their lives.  One man worked in a shipyard.  This man had a nagging cough and shortness of breath for a period of time.  Finally he knew he had to see a doctor.  He was diagnosed with meso and passed away in three weeks . . .

Meso is not to be messed with; what might seem  as a “normal yet nagging cough” may be the first symptom of this cancer and the sooner you get in to see the doctor the greater chances you have in recovering.  Let me spell this out for men in particular, men are either stubborn and will not see a doctor or think of themselves as wimps if they see the doctor – do not have this mentality if a cough is not getting better; there may be more at stake than a “cough” – it could be your life!

The following article is written by Tim Povtak, a staff writer for Asbestos.com.  It is an important article and a MUST read for anyone who has been around or worked with asbestos.  Again, the sooner the cancer is identified, the better chances of survival.

In memory of Rod and Mike. . .

Asbestos and What to Do With Related Disease

The use of asbestos dramatically reduced over recent decades, yet the incidence of asbestos-related diseases like mesothelioma cancer continues at a steady pace, making awareness more important than ever.

Like most cancers, mesothelioma can be treated more effectively if it is detected early, which has been difficult in the past because of an extremely long latency period and many of the first symptoms mirror less serious health issues.

It also is a rare cancer that many medical professionals, and even some oncologists, struggle to identify.

It can be anywhere from 10 years to 50 years after an exposure to asbestos before a person realizes something is wrong and gets diagnosed with the disease. Symptoms can include coughing, fatigue, shortness of breath and unexplained weight loss. Because the majority of patients are elderly, the symptoms often are not associated with a rare cancer, which delays an accurate diagnosis even further.

If there is a history of asbestos exposure – occupational exposure is the most common — coupled with these symptoms, a person should seek out a doctor with experience handling asbestos-related problems.

After a routine physical examination will come imaging tests – X-ray, MRI, or CT scan. If certain abnormalities are found, a PET scan may be recommended to look for potential cancerous metabolic activity.

If a scan uncovers problems where mesothelioma is typically seen, the process can move to various biopsies, which can further narrow down the diagnosis. If mesothelioma is suspected, it may then become crucial to see a specialist.

Mesothelioma typically attacks the lining surrounding a lung or the abdomen, stemming from the inhalation or ingestion of microscopic asbestos fibers which can be dormant for many years before causing the scarring that leads to the cancer growth.

Asbestos is a naturally occurring mineral that once was coveted throughout the world for its ability to strengthen, insulate and resist heat. It was used in myriad of ways, particularly by industry for commercial and residential construction.

Its use in America peaked in the mid-70s but declined steadily after its long-range toxicity became so well known. Although it’s not banned in the United States today, its use is regulated carefully. Its use from the 1970s, however, still is felt heavily because of that latency period and because it’s difficult to remove.

Asbestos remains prevalent in any structures built before 1980. It is especially dangerous when disturbed during any kind of renovation, reconstruction or demolition because the aging fibers easily become airborne.

Vigilance might be the best precaution today to avoid any potential problems. Older structures have asbestos almost everywhere. From the floor tiles to the walls and into the roofs, there are asbestos products. Use precautions anywhere there are renovations being done.

If you worked years ago anywhere asbestos was used, inform a doctor if the nagging cough or sudden shortening of breath persist. Mesothelioma often is accompanied by a grim prognosis – six to 18 months to live – but earlier detection and recently improved treatment regimens have allowed patients to live considerably longer.

Surgery is only an option if it has not yet spread. Too often, though, the diagnosis isn’t made until the disease has metastasized. It’s why the scientists and doctors today – even though asbestos is hardly used – are putting considerable effort into finding ways to detect it earlier. So stay vigilant.

Author bio: Tim Povtak is a staff writer for Asbestos.com. He has written about asbestos issues since 2011 following a distinguished career as a journalist.

For more information please click on Asbestos.com.

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