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.

 

Childhood Cancer – Leukemia #1

“By the end of January Emily began to show more bruises than was normal, especially considering the fact that she wasn’t walking or playing as much as usual. And when she did walk, she was very clumsy, falling a lot. The last week of January, while I was in the kitchen, I heard a loud thump followed by her screaming, and I rushed into the living room to see her on the floor at the base of the coffee table . . . 

Wednesday morning, Feb 8th, Emily woke up with her right eye completely swollen shut and a huge black and blue goose-egg bruise above her right ear. But the kids had a Valentine’s Day party to attend, and by the time we left the house, her eye was back to normal. At the roller skating rink, Emily tried to skate, but quickly got tired and soon fell asleep in her aunt’s arms . . . 

When we got to the Emergency Room and checked in, I didn’t even know what to tell the receptionist. I think I said something like, “She’s been acting different and tired and has a lot of bruises, and we’d like labs drawn.” . . .

But then, at 9:15 p.m., Dr. Owens came back into the room, put her hand on my shoulder, and said, “We need to chat.” In my peripheral vision I noticed a nurse follow her in and shut the door. I looked at my mom and we sat on the bed with Emily in my lap. Dr. Owens looked me straight in the eyes and said, “Emily’s blood work came back and it’s abnormal. Her red blood cells and platelets are too low, and her white blood cells are too high, and there are abnormal white blood cells. She has leukemia.” I turned to my mom and we both choked out a sob, then I turned back to Dr. Owens as she asked me, “Do you know what leukemia is?” . . .”

not feeling very well . . .

And so begins emilyannelove’s start to a new life.  Not only has her life changed but her parents and siblings as well.  And not only her parents and siblings but her grandpa and grammie and uncles and aunties and cousins.

I came across Emily’s blog while looking for Christian cancer blogs.  When I read about her journey, I was immediately captivated by the intense treatment she underwent and her family support network.  The family persevered; together they endured a year of ups and downs, small victories, great setbacks and an unrelenting fear as Emily time and again was admitted to the hospital for “unknowns”.

Emily is done with her treatment and is in the maintenance phase of her cancer. Her mother, Chrissy, recently wrote what maintenance entailed – Emily is still treated with chemotherapy but she can do most of this at home.  Chrissy reports that the family is getting back to “normal”.  I delight and rejoice with the Love family for getting back to normal but I think the family would agree with me, what is normal after having cancer?

What are the key statistics for childhood cancer?

Childhood cancers make up less than 1% of all cancers diagnosed each year. About 11,630 children in the United States under the age of 15 will be diagnosed with cancer in 2013. Childhood cancer rates have been rising slightly for the past few decades.

Because of major treatment advances in recent decades, more than 80% of children with cancer now survive 5 years or more. Overall, this is a huge increase since the mid-1970s, when the 5-year survival rate was less than 60%. Still, survival rates vary depending on the type of cancer and other factors.

Cancer is the second leading cause of death in children younger than 15 years old (after accidents). About 1,310 children are expected to die from cancer in 2013.

Number One Cancer in Children: Leukemia

Leukemias, which are cancers of the bone marrow and blood, are the most common childhood cancers. They account for about 34% of all cancers in children. The most common types in children are acute lymphocytic leukemia (ALL) and acute myelogenous leukemia (AML). Leukemia may cause bone and joint pain, fatigue, weakness, bleeding, fever, weight loss, and other symptoms.

What is childhood leukemia?

Leukemia is a cancer of the early blood-forming cells. Most often, leukemia is a cancer of the white blood cells, but some leukemias start in other blood cell types.

Leukemia starts in the bone marrow (the soft inner part of certain bones, where new blood cells are made). In most cases, the leukemia invades the blood fairly quickly. From there it can go to other parts of the body such as the lymph nodes, spleen, liver, central nervous system (the brain and spinal cord), testicles, or other organs.

Development of leukemia

Any of the cells from the bone marrow can turn into a leukemia cell. Once this change takes place, the leukemia cells fail to go through the normal process of maturing. Leukemia cells might reproduce quickly, and not die when they should. They survive and build up in the bone marrow. Over time, these cells spill into the bloodstream and spread to other organs, where they can keep other cells in the body from functioning normally.

What are the risk factors for childhood leukemia?

A risk factor is anything that affects your chance of getting a disease such as cancer. Different cancers have different risk factors. For example, smoking is a risk factor for several types of cancer in adults.

Lifestyle-related risk factors such as diet, body weight, physical activity, and tobacco use play a major role in many adult cancers. But these factors usually take many years to influence cancer risk, and they are not thought to play much of a role in childhood cancers, including leukemias.

There are a few known risk factors for childhood leukemia.

How is childhood leukemia diagnosed?

It is very important to diagnose childhood leukemia as early as possible and to determine what type of leukemia it is so that treatment can be tailored to provide the best chance of success. The exams and tests below are used to diagnose the disease, to help determine what type of leukemia it is, and to measure how advanced it may be.

Signs and symptoms of childhood leukemia

Many of the signs and symptoms of childhood leukemia are caused by a lack of normal blood cells, a result of the leukemia cells crowding out the normal blood cell-making cells in the bone marrow. As a result, a child may not have enough normal red blood cells, white blood cells, and blood platelets. These shortages show up on blood tests, but they can also cause symptoms. The leukemia cells may also invade other areas of the body, which can also cause symptoms.

Many of these symptoms have other causes as well, and most often they are not due to leukemia. Still, it’s important to let your child’s doctor know about them so that the cause can be found and treated, if needed.

For a list of symptoms please click [here].

Other resources and references

http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-to-learn-more

Article resource:
http://www.cancer.org/cancer/cancerinchildren

For Emily’s blog and her compelling story please click [here].

Don’t forget to read “How It All Began” for Emily’s complete story of how she was diagnosed with childhood leukemia.

This is the first article in a series.  The next article will be on the personal side of childhood leukemia.

cancer does not silence us! the harmony of our songs . . .

In my last posting I wrote that I “do not lightly” follow the Christian cancer blogs I have come across in my research.  I read them, I comment on them, I try to bring hope, support and encouragement in their cancer journeys.  I am invested in them.  Is this good?  Is this bad?  When I write, “I am invested in them”, I am emotionally involved with these people.

Yesterday my email inbox filled with notifications that many of the blogs I follow have a new posting.  My first response is I am thrilled they have updated!  My second response, I hope all is well!

I was delighted to hear from emilyannelove’s aunt, Auntie Plum.  She is the author of little  Emily’s blog.  Emily has childhood leukemia.  Emily has just returned from a two week hiatus from her treatment.  She was not recovering well and rebounding from her chemotherapy as nicely as her medical team had hoped so they gave her (and her parents) time off.  Emily responded well!  Praise God!  Now she is heading back into her treatments and Auntie Plum is asking for our prayers, “Please join us in praise for the improvements in Emily’s spirits, mobility, and physical well-being. Please keep praying for an increased appetite and an overall improvement in her blood work, as evidence that the treatment is working to fight the Leukemia in her body.”

But I must say, the post that Auntie Plum wrote on April 21, 2012, “Special Beads for a Special Girl”, just blessed me!  Tell us, Auntie Plum, how can we send Emily a special bead for her necklace of courage?

Pastor Bob Jennings, who has pancreatic cancer, updated his blog, Bob Jennings Journal, too.  I was happy to read that he was able to walk his daughter down the aisle on her wedding day.  I am sure the family rejoiced as God continues to walk Pastor Jennings through this valley and in His mighty love and grace, gave to the family this treasured memory on this special day.

Pastor Jennings blessed me in his willingness to discuss the raw experience in having terminal cancer, “I lived my life for you, Lord . . . I did what I could.” Pastor Bob Jennings”.  His most recent post he compares birth to death, “Meditation:  Ecclesiastes 7:1b  … the day of one’s death is better than the day of one’s birth.  What!  How can this be?  It is true for the Christian, and only for him.  Here are some reasons why it is better…”  Again, Bob leaves me humbled . . .

“Thrilled to Death: Paul Pavao’s Leukemia Blog”, Paul writes about his after thoughts from his newly ended chemotherapy and allogeneic stem cell transplant.  Paul really was “thrilled to death” not necessarily about his diagnose but that this might be used to God’s glory.  Paul writes the pros and cons to having leukemia and now that he is post treatment, he rethinks what he initially wrote in regards to the pros and cons of having cancer.  I am delighted he is doing so well!

Tamara is in the midst of her journey with chronic lymphocytic leukemia, or CLL.  She is post “allo” stem cell transplant by 20 days and shares with us daily of her day by day, sometimes, hour by hour, recovery.  “Our Journey” educated me on the difference between our blood cancers and how leukemia may be more “curable”, the treatment seems to be more extreme.  An autologous stem cell transplant seems like a walk in the park compared to an allo!  Both Paul and Tamara face the possibility of Graft versus Host Disease, which in itself can be very unpleasant.

Lastly, through my blogging I have a new friend (but aren’t all these people my friends?), Elaine Olsen, a new breast cancer survivor, and author of “Peace for the Journey”.  She is an inspiring writer and I am challenged by her gift and because of her, I aspire to become better in my skill of communicating through the “pen”.

She recently wrote a lovely article, “Rediscovering Your Song . . .”

“Being a survivor isn’t about defeating the cancer. Being a survivor is about defeating the silence . . . . But here is the truth of the eternal song. Once the music has made its way into a heart, no amount of throwing and crying and denying its pulse can keep it buried forever. We can go to the grave refusing it a voice, but in the end, the music remains. It will find its chorus, even without our participation, because the King’s music is meant to be sung.”

I am pleased to write that Elaine gave me permission to post this inspiring article on my blog.  It is my prayer that our songs, little emilyannelove, Pastor Bob Jennings, Paul and Tamara, as well as my song will not be defeated by cancer but we will feel the elation and hope to rejoice in that melody God placed in each and every one of our hearts!  Cancer does not silence us! and in heaven our songs merge into one chorus that brings praise and adulation to our King!

“Rediscovering Your Song . . .” follows . . .

addendum:  If anyone is interested in sending little emilyannelove a bead for her necklace of courage from your area of the world, please contact me via “Your voice . . . contact me”  (found above).