Monday, June 22, 2009

Confronting death from myeloma

Multiple myeloma, a cancer that has no cure, prognosis varies, average 3 to 5 years. (2001)
When I was first diagnosed with myeloma in 2001 it was explained to me that myeloma can be treated successfully slowing down progression. There would be cycles of treatment, plateau stage (remission) and relapse. Eventually I would succumb to the effects of myeloma in some form; pneumonia, kidney failure or bone destruction were mentioned as common causes of death by myeloma.
No cure, no cure, no cure, death, death, death, echoes in my mind.
No cure and ultimately death were issues that I had to deal with. Death is generally a consequence of myeloma.
Initially there was a problem; I could not get my head around the no cure/death issue. Maybe it was part of my denial, the “not me” syndrome.
Aged 53, happily married, fully employed in a challenging job, my life was sweet. Except for deterioration in the previous 6 months I was fit, healthy, felt bullet proof. Death was not an issue I ever considered. Death happened to other people. I was too busy, too happy for death.
There was a problem, I had to get realistic, I could ignore death letting it nag away at me or I could deal with it. I chose to deal with it.
With help from the NZ Cancer Society counselling service I confronted death. Where was death, I could not see it, never had to. Death to me was hiding around a corner of a building. My aim was to walk around the corner, find death, grip it strongly and drag it back with me out into open spaces. There I could confront it, talk to it and ask questions, talk about it, a new experience for me. It took a while, lots of emotion, lots of tears, lots of help.
The process raised questions like: what happens when I die, where do I go after death, somewhere or nowhere, is there life after death, what are my religious beliefs, why me for this illness and death? Am I prepared for death, is my will up to date, are my finances in order? What sort of funeral service do I want, am I to be buried or cremated? And many more questions.
Was I premature in discussing all this in the first few months after diagnose? No, I don’t think so. It cleared the air for me , part of the process of accepting myeloma and allowed me to move forward focussing on survival.
On the question of religious belief. My faith has grown during my illness, changing from living in a Christian like manner to recently becoming a committed Christian. The power of prayer has amazed me. I felt very humble during my difficult times when hearing of the many groups and individuals praying for me, it made a difference, thank you.


Michael Evans said...

Sid, thank you for your blog. I was diagnosed with MM in August 2008. I had an autologous stem cell transplant in Feb. 2009, and relapse commenced in late March 2009. I am already at my third plateau. Good luck on fighting your disease. I find that I went through much the same thought process you did, as indicated in your blog.

Michael Evans

Penny said...

Sid, again, thank you for your blog. I read your blog and it really helped before he went in for transplant. It gave both of us some idea as to what would happen.

My husband was diagnoised with MM in April 2009. He underwent chemo, stem cell transplant and the day before he was to be released he had a massive heart attack and died. (Oct. 15, 2009) He had heart problems all of his life and we were warned by the heart doc this could happen during transplant. Unfortunately all I heard was going home. Please stress to people to have wills made and their last wishes known to their loved ones.

I will pray that you continue to have a long remission.


Penny Lee

Sid said...

Thank you for your comments on my blog, one reason for creating it was to help others.
I give my condolence to you for the passing of your husband.
I have a red rose in the corner of my heart for each of my myeloma friends who have succumbed to our disease.
There is one there for your husband.
The point you make of wills and wishes is something I will do a posting on in the future.
I will pray for your husband and for you in your grief.

Trainier said...

Hello Sid!

I've been looking for content talking about the end times of MM. I love your blog, it has been very helpful to me on this day as I continue to suffer setbacks.

I was 52 when I was diagnosed March 11, 2009 with IgA kappa stage IIIA. First auto stem cell transplant July 22, 2009, no response, second auto sct December 28, 2009, no response.

Now chromosomal changes kicking my MM to a even more aggressive beast. The docs want me to have an allo and I have a perfectly matched donor, my sister. Insurance has denied once again after appeals. I am just now working on a new game plan.

My doctor says the allo is my only chance of remission, so I am rather bummed at the moment. Not defeated yet, definitely bummed.

I have not been dealing with this as long as you have, honestly when I had my first SCT I never gave this thing a second thought, I really thought I would be done with this thing!

Thanks for taking time to share your journey with the world.

Take care, Tricia in Texas