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Life's Journey

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  1. SweetC's Avatar
    Ever heard the expression 'tell God what's you're going to do and watch him laugh?
  2. SweetC's Avatar
    In early 2011 my doctor advised that I was diabetic so I decided to do something about that. The first step was to lose weight and the second one was to have surgery I had needed for some time = a hysterectomy with all of the trimmings.

    When I left the hospital they cautioned me not to become constipated. Having never been on opioids I did not know/understand how they could/would mess a person up so badly. So, yes, I became constipated and less than 2 months later had developed a severe case of diverticulitis.

    The second thing the hospital did was notify my PCP that my RBC was low.
  3. SweetC's Avatar
    In February of 2012 I thought I had a severe case of diverticulitis so I stayed in bed from a Friday night until the following Thursday - when I fell trying to get to the front door. I decided that I should probably consult a doctor. I was taken to the hospital - ruptured appendix - doctors said I had about 4 hours to live when I got there.

    This is the day I saw the black figure on my patio and suddenly three angels in a golden glow between the dark figure and me. Yes, I was probably in shock, but I will always believe there were angels and they were there to save me.
  4. SweetC's Avatar
    When I left the hospital once again they notifielowd my PCP that my RBC was low. I should mention that he put me on iron supplements in 2011, and since they didn't seem to be helping, he referred me to a hematologist who gave me iron infusions for the remainder of 2012 and 2013. His comment "well, maybe you're one of those people who just normally has low RBC."
  5. SweetC's Avatar
    I had an appointment with this hematologist the 1st quarter of 2014 and had decided that I would see him one more time. If he did the same ole/same ole, I was going to advise I would not be back. However, prior to that appointment date I got a letter from the center advised that he was no longer with the center and that I had been assigned to a new doctor.
  6. SweetC's Avatar
    This doctor again gave me iron infustions (5 = 1 every two months), and in October told me that he had noticed an abnormality with one of my test results. He suspected MGUS. He did a bone marrow biopsy in November and on 12/31/14 I was given the diagnosis of smoldering myeloma.
  7. SweetC's Avatar
    During 2015 and 2016 I was given quarterly IVIG infusions to keep my WBC at a normal range.

    Due to insurance I had to seek out a new oncologist at the beginning of this year (2017) and because I was a new patient and because 2 years had elapsed since my last bone marrow another biopsy was done in April. It showed that my MM cells had increased from 20-25% to appx 40% which according to the doctor puts me at about 75% on the way to having full blown myeloma.
  8. SweetC's Avatar
    Because of the success of new drugs that have been made available in the past few years new thinking is that treatment should not be delayed until full onset of the disease. (Mayo Clinic, etc).
  9. SweetC's Avatar
    So on June 12 I began a regiment of chemo. Once a week for three weeks I have gotten an injection of Velcade, and an infusion of Dexamethasone (steroid), and have taken Revlimid for 14 days (off 7 days). This regiment will continue for 6 months, when another bone marrow biopsy will be done to check my MM cell level.
  10. SweetC's Avatar
    I feel blessed I have had no severe side effects I feel good - especially on the day after the Dex infusion - lol. This is when I dig nut grass and fill in the holes. Other days not as much energy, but very little of the exhaustion (or other side effects) I was told to expect.
  11. SweetC's Avatar
    My motto is Onward and Upward. I am 70 years old. My doctor has assured me he can guarantee me a normal life expectancy. Thumbs up to him!
  12. SweetC's Avatar
    An interesting note I grew up in the country, and attended a very small school - average 1 -12th grade - 220 students. I know of 5 cases of MM from the school - which was built during our high school years ..... and was loaded with asbestosis. Another thing we were farm kids - lots of cotton poison and DDT before it was banned.
  13. ~tj~'s Avatar
    Wow Sweet! I had no idea. Big hugs to you!!!!
  14. SweetC's Avatar
    Of those 5 students 4 of us are descended from one family who moved to the area in the early/mid 1800s. There has been some indicated that this may be familial. This is one my father's side of the family.

    My maternal grandmother died from MM in 1964, 50 years before I was diagnosed Another indicated that it may run in families.
  15. SweetC's Avatar
    Some interesting tid bits. Sam Walton had MM. He donated $Msss to Univerisity of Arkansas for research.

    A lady who works with my DIL was diagnosed in 1991 and went to U of A for treatment. In 2008 she was told she no longer has MM cells.

    One of my old school mates is a 16 year survivor so while MM is still considered incurable it is not longer referred to a terminal.
  16. SweetC's Avatar
    Two more things and I'll be quiet.

    One of the meds I'm taking - Revlimid was developed from Thalidimide sp - the drug that was given in the 50s to help pregnant women sleep and with nausea. There was a story on "Call the Midwives" recently about the drug. There's an interesting story behind the development of this drug I'll share later.

    Second thing, I've been open here and I would like to ask that we keep this to ourselves here at OUAC.

    Again, Onward and Upward = One Day at a Time.
  17. protectkidz's Avatar
    dang it, Sweet, you never said a word!!! You are brave, you are wonderful, you are a survivor!!!!
  18. SweetC's Avatar
    protectkidz, I gave to St. Jude's for years. I figure if those children can deal with what they have to deal with I - at 70 - have absolutely no room to complain. Hugs and thank you for your kind words.
  19. protectkidz's Avatar
    Hugs, back! oh, and you're pretty!
  20. PAJS's Avatar
    Wow! What a journey. "Onward and upward One Day at a Time." You are so very courageous and a remarkable survivor.Bless you. Will keep you in my thoughts.
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