My elation lasted a few hours on Friday. My good friend, childhood pal and occasional medical advocate Stacey had come along to hear Dr. K almost but not quite sort of kind of tell us that it looked as though I could still be in remission. Perhaps. We thought. For the most part. As the hours and days have melded, the inability of many in the medical profession to give utterly clear information more than 10% of the time has grown on me.... kind of like too-strong coffee does when you've attempted to ease up on such pungent lusciousness. (Raise your hands if you can tell I love coffee). The mug is empty but your tummy is still scowling. Wait, I've savored a delicious cup, I should be really happy, what's wrong with me?That's only part of the reason for the jolts of distress. The "good news" is frankly that I am given an opportunity to continue on a path with huge challenges and absolutely no guarantees. Sometimes I feel like I'm at a carnival, with bright-eyed shysters hawking their wares while I just wish I could get a straight answer without trying to beat it out of them. Is the merry-go-round a quarter or not? Won't you just tell me straight out? They chirp that I'm "young enough" for a bone marrow transplant, meaning I'm 52 rather than say 72. "This is your best chance!" they smile. What they don't add and would be a lot more honest is, "... if you live through it." Fully half of the patients who go through an allogeneic bone marrow transplant from an unrelated donor die from the treatment. Let's see: Will I wait and have the leukemia kill me or sign up for this?
Yes, I'm basically (I won't repeat the word game again, you can relax) in remission. I'm not cured. Cured is 5 years of survival. If you make it that long, you are SO a winner. "Early Christian, you have been released from the lion's jaws!" But I'm still in the arena and I want to get OUT of it. No lions, no den, no cheering Romans. Can't I just leave now?
If I were a movie - and I am not - this is where the close up shows my tortured face slowly transformed into boundless faith, fervent conviction and passionate determination. Cue the soaring music; "I'll beat this thing, you betcha!" I know I watched films like this from my childhood. It's a classic and universal theme. "When the going gets rough....." and bla-dee-bla. If I really wanted to be impressive, I wouldn't even post such doubts. But that's not why I created this online world called a blog. If I wanted 24/7 applause, I'd have a friend Photoshop me as a foxy 22-year-old and post it around the Internet. This is a space to share my honest and sometimes messy path and, when I can, moments of vulnerability, even when they aren't MGM inspiring.
I don't want to go back into the hospital for a 2nd Consolidation. Some folks have four of 'em, and this is after Induction, that thing wot kills 25% of the folks who try it. My hair is growing back, for gosh sakes! I have peach fuzz on the top of my head! My 15-25 minute jogs around the neighborhood are growing in strength and pleasure, a far cry from the puzzled exhaustion last October when I was becoming leukemic and didn't know it. When I don't jog, I make sure I'm out walking briskly for at least 45 minutes. I FEEL stronger. I'm poking around with my work/investment research, although actual income production continues to elude me - for now. My life force is asserting itself. It is so beyond counterintuitive to know that the medical profession has my ass tagged for another round of poison to keep me in this "first remission." I guess waiting until I'm skating on the edge of relapse isn't a terribly bright idea. Until the bone marrow transplant dance happens, which could take 2-6 months, I am told that there's a bed in the oncology ward with my name on it every 4-6 weeks. Today is Week 4 and I'm crouching in resistance.
This leukemia is such a pain in the ass.
In rebellion and affirming that I have CHOICE, I made a big ole batch of Essiac tea. Folk tales allege of its cancer cures (it's very Google-able). I take an ounce at bedtime with 2-3 ounces of boiled water. I'd also asked Dr. K about taking vitamin supplements, nothing more outlandish than a multi, Vitamin C and Omega-3 fish oil. "No," he said firmly. "Medical journals do not report that they have any particular efficacy." I bowed my head and sulked for 2 days. I then thought, "NO ONE is telling me that I cannot take vitamins." When I'm in the clink, I am compliant. When I'm getting inundated with chemo and then antibiotics, my sense is to let 'em do what they're supposed to do. I'm home, I'm free, I'll take my vitamins. Sometimes I'll even make fresh organic juice (carrot-apple-beet-ginger).
And for today, strong organic coffee in the mornings. I struggle with gratitude but I am not devoid of some pleasure.....
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7 comments:
Watching, praying for you, sending love.
Thank you, bmw - I'm praying, too, even though my attitude is ready for some rewiring....
Unfortunately, doctors can't answer questions if they do not know the answers. Surrender to the process! Give up rebelling, anger and boo hoo to treatment that you don't want to do. God needs you to sail through this with peace and a smile. A joke for the doctor every time you see him. Open for a miracle. You can make this process OK. The outcome is good. This doctor sounds great. Work with him to win. You are not bad or worthless if you don't kick this out the first times. Let Go Attitude is everything! You old life can fall away for a little while. Cruise with new attitude!
"Unfortunately, doctors can't answer questions if they do not know the answers." That's when a clear "I don't know" tells me I'm speaking with people who are continuing to earn my trust. It's not perfection I seek (although I would not turn it away, don't be misled here) but a no-bullshit zone. I'm still not getting proper HLA typing 2 months after it was first suggested for this very reason.
If I know you, please leave a first name! ;-)
Supposed to be grateful?
What a load of BS.
I hear you loud and clear on Dishonest Healthcare Professionals.
Who the fuck are they to decide what I’m to know and not know?
It’s MY life – Would you mind very much if I make the decisions?!
The answer is that they are convinced that they know better and can make better decisions for us by couching the treatment alternatives in their own terms.
It’s a well known phenomenon – I’ve read of folks who literally screamed in their face to, “Tell me what the fuck is going on!” – And had it written off to, “The poor dear is just hysterical – Proving that they need me to make the decisions for them.”
If one had never considered mass murder before...
As far as, “Research shows that supplements don’t blah, blah, blah...”
Fuck ‘em. While certainly sharing most characteristics - Everyone also has a different metabolism/makeup.
Personally, I take Green Tea supplements, Vit B-12, C, D, Probiotics, Protein/Green Algae shakes, and whatever I think might help me keep my red blood count and defenses up.
Be strong in living YOUR life girl – Not the one that the White Coats, however well meaning, think you should be living.
Go with your Intuition – Not your fears.
Love,
J.C.
You rock, J.C.! :-)
I agree with J. C.
Doctors CAN'T know everything- no one can. Add to that the subtle differences that make us unique (just like everyone else...) and stuff we don't even suspect that's going on (just like gravity had to be "discovered") and, well, medicine of any type becomes kind of a crap shoot. Some people have better aim than others or accidentally get that barn door on the first try but mostly, it's hit and miss for just about everyone.
I honestly believe that we all have the answers to our own health in our selves. We may need outside testing to determine the actual problem, we may need vitamins or fiber or other outside things to help us get well again or counselors or trainers to help us get on track but... essentially, everything you need is within you.
The trick is to get quiet enough so you can hear the answers to your questions, and to know how to test the answers so that you can be sure they are true!
Why do I think this? Partly because of personal experience but also because of the so-called placebo effect. If a "sugar" pill can effect cures or relieve symptoms as well as a regular medicine in even some people then there is way more to the health of the physical body than most doctors are willing to acknowledge.
One last thing prompted by J. C. saying, "go with your intuition and not your fears." I think, and I am not alone in this, that there is a very strong correlation between fear and anger and illness in our beings.
Find the anger or fear that has stirred up all this illness, heal that anger or fear and I believe that you will be well on your way to health again regardless of treatments.
There are lots of ways to heal anger and fear but my personal favorite for this is EFT: www.emofree.com Combining EFT with prayer and Reiki has transformed my life in every way and I wish everyone would try it at least once.
My Mom used EFT during her breast cancer experience two years ago now and it made major and measurable differences in her physical being, the most obvious of which was normalization of her situational high blood pressure without any medication. The other was losing her hair- she went from crying and being really mad about it to comfortably buying a wig to discarding the wig and just going around bare headed with no trauma at all.
Anyway... I'm rambling and this is not the place for that!
We love you, Diane!!! We pray for you every day.
Hugs,
namaste.
Felicia.
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