Story of Survival

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Okay, so for those waiting on bated breath to hear the story I’ve been yapping about, surrounding my own brush with “cancer”, such as it is . . . insignificant, I admit, when compared to everyone else’s challenges on this site . . . . here it is.

 

In the midst of the story I shared on the “About Me” tab of mine . . . I went in for a physical because of severe bone pain and repeated upper respiratory infections I had been suffering, off and on, for years after my husband regained health in 2010.  Because of my mother’s death in 1985 (at the age of 67) from multiple myeloma, they started running lab tests for MGUS (monoclonal gammopathy of uncertain significance), many times a precursor to multiple myeloma.  They also ran what’s called an ANA antibody test that came back with “off the charts” results.  My MGUS results were marginally low and of little concern to anyone (other than to me, obviously, because of all the pain I was having, largely in my upper back and in my head).  After a few nominally relevant imaging tests, they (locally) determined that I was of little priority to anyone.  Even though CD138 cells were found in my bone marrow, the levels in all tests were “insignificant”.  They were pumping me full of opioids, nerve pain medication and some anti-depressants they were perfectly willing to keep me on and out of their faces. 

 

Feeling abandoned and, obviously, frightened after meeting with one of our local “experts” on multiple myeloma who told me that I “shouldn’t” be experiencing all this pain with my “numbers” being as low as they were . . . I went home and scoured (I believe the CSN) for support and other places on the internet for anyone suffering from similar experiences.  Out of the vastness of cyberspace, up popped up a message on my computer screen, from a woman who was enrolled in a study at the NIH in Bethesda, MD, conducted by the leading Multiple Myeloma expert in the country, who was looking for people like me . . . and was offering free airline reservations, hotel accommodations, as well as lab and imaging tests I was being denied locally.  I submitted my application to be enrolled in the study and was accepted.  My husband and I flew out there in February of 2011 and again in August for follow-up as they had discovered similar, rising lab and imaging tests that were of concern.  He wanted to see me again in 6 months, so we traveled there again.   At my last appointment there, this “expert” (top-notch in his field) suggested I return home and ask for my local oncologist to introduce “Reclast” infusions to lessen the pain I was experiencing instead of continuing the heavy doses of narcotics I was on.  He told us that these types of drugs were known to often help with pain and, in some cases, were known to even reduce the levels of the MGUS and other lab abnormalities we had seen.  Even though he told us that my condition would not likely “progress”, he wanted me to stay in the study, as he was interested in my lab and imaging tests, as well as a spot of fibrous dysplasia they discovered in my skull (along with the lytic lesions they found from an earlier ER visit I had made previously).  But, because my husband’s expenses weren’t covered under the study and it was becoming a hardship for me to continue to travel so far away, just to have lab tests run, we decided to withdraw from the study.

 

When I returned home, I asked (begged) for my local oncologist to administer the Reclast infusions.  After much fighting and begging with him and our insurance company, it was approved.  But, only when/if I could stop taking the pain medication they had been prescribing me.  I had to wean myself off these highly addictive drugs . . . a trip to hell I wouldn’t wish on anyone.  I, basically, did it on my own, with a variation of what’s called “Cold Turkey”.  It was indescribable. 

 

I began the bisphosphonate drug therapy later that year, in 2012, and all my lab tests returned to normal.  I found a new oncologist who was willing to continue administering the Reclast (even though I have to fight with the insurance company every 2 years to get it) and have had much-improved pain, usually controlled with higher doses of Ibuprofen.  I have diffuse osteoporosis (also a symptom of multiple myeloma) and have had stress fractures in my history . . . again, all indications of MM, but things are much better for me now, off the opioids.  I’ve been told not to worry about this thing “progressing”, and with that expert opinion I received years ago . . . I don’t really think about it much. 

 

When I asked my new oncologist whether or not the ANA blood tests (an obtuse, vague blood test that indicates antibodies in a person’s blood), could hold an unlocked key to my overcoming what I still refer to as my “beating” my brush with what my mother eventually died from, she couldn’t discount it.  It is my unfettered suspicion that that one blood test indicated I was fighting off the cancer and was why it was so, “over the charts” abnormal for so long.  I think, with each (almost “quarterly” upper respiratory infection), for years, I was fighting something very serious and won the battle with it.  By the time they started actively “looking” for what was causing all my pain . . . and did the bone marrow biopsies they did here and out East, we were seeing the lingering cells it left behind.

 

I don’t know how significant or relevant or accurate any of this is . . . I only have my improved lab/imaging tests to prove my suspicions.  But what I learned . . . from both my fight for my husband’s survival and my own . . . is that a person cannot necessarily trust the medical profession or the health care industry to fight for you.  YOU are the only one who can trust.  Trust your own instincts to sometimes shout over all the rhetoric and double-talk sometimes offered as their “best” considered “opinions”.  FIGHT for yourselves.  FIGHT for those you love and trust that voice inside you, your heart, to guide you through the challenges in life that question your intelligence and better judgement.  Think with your heart and let it guide you to do what you know is best for you and that person you love. 

 

I hope my story inspires and encourages everyone who reads it.  I offer it with sincerity and the faith I discovered which is so much more important than whatever religious label you wish to attach to yourself.  I truly believe I have found “GOD” within me and it doesn’t matter what church. synagogue or mosque I may or may not choose to attend.  All this cancer, all the disease and all the other unfair afflictions we each suffer from here and there are NOT the work of a “GOD”, a loving god.  They come from somewhere dark and evil, chained to this earth, begging for souls to give into its temptations to abandon a belief in a good and loving, supernatural power that has reign over eternity and not the limited earthly reign of something sinister.

 

I pray now for strength and knowledge.  I pray for wisdom to search for the truth and for the just.  “GOD” isn’t going to come down in a flash of lightning and carry all our troubles away.  WE are meant to do the earthly work he cannot do.  THAT is where you will find him/her/it.  THAT is where faith lives and supersedes any religious beliefs that try and claim as “all-knowing”.

 

Thank you for your interest and support.  I welcome ALL comments and critiques.  They all help and have helped me in my/our latest journey.

 

“GOD” bless!

 

Dawn