Treatment= chemo therapy and radiation
Chemo and Radiation= Low counts, compromised immune system, loss of executive functioning, loss of hair, shortening of tendons, issues with weight gain, problems in the sun, mood swings due to steroids, anxiety, higher risk of "secondary cancers........
End of Treatment=relief, more anxiety, getting back to life as it once was, sort of. Graduation for Junior High, Graduation from Holy Names with honors, Admission into 9 of 11 colleges, freshman year, first summer, return to college, RELAPSE.
Relapse 57 months post treatment = Life flight from Spokane to Seattle, deeply colored chemo to achieve remission, 36 hours home then 25 days back in the hospital, Remission
Remission= one round of intensification, 6 days of methotrexate and a couple of other things, a couple of weeks off, etoposide and some other stuff over 5 days,
Remission and intensification= international bone marrow search.
No Match= Double Cord Blood search
Double Cord blood transplant=longer stay in the hospital, successful engraftment, baby cells that have a lot to learn, long slow road back to health, 100 or so blood transfusions of some sort, low platelets for a long long time, lots of steroids, high blood sugar and need for insulin, weird purple hands, weird blood pressure, weird hormone issues, loss of fertility, BK virus (bladder/kidney), need for lots of pain meds....... eventual release.
Release= almost multiple, daily appointments for the first 100 days. Lots of med checks, lots of scans, blood draws, lots of changes, lots of "ummmmm, everyone is different. GVH flairs
Steroids= so many things I could not even guess. Some very obvious, some very deep dark and scary.
Steroids and other stuff=blood clots.
Lovenox=(was supposed to be in pill form in 2005) two shots a day and blood draws a couple of times a week, then only every other week or so and huge, huge bruises and nose bleeds and lots of bleeding stuff.
FINAL SIDE AFFECT = RETURN TO A NORMAL LIFE. We hope anyway.
1 comment:
We tried Lovenox twice a day but it failed after the 5th day. Emergency surgery as there were clots in right calf and both lungs, put in a filter to catch clots.while in recovery lungs collapsed.more stay in the cardo-unit. Life has changed so drastically but then I read what Mary Elizabeth is going through and I hit my knees praying for her and for you, as if you two can go through all of this, I can go through what I'm going through, just by reading your strength.
Sally, I read your blogs everyday and you give me inter strength that I never knew I had.
Mary Elizabeth, I hope you can become an inspiration speaker of everything you are going through. You can and will make a difference is so many lives!!
You have been my inspiration as well as my wifes. Both of us get on our knees praying for you, Mary Elizabeth and for you, Sally.
You two women are saving lives that you'll probably know.
All I can say is thank you. You have given me a reason to look forward to our future, no matter where it leads us, we can go through it.
I hated the shots and I hate all the medications I'm on, but it's not near what you two are going through.
God Bless you!! God blessed me by allowing me to read your blogs.
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