“And we’ll keep on fighting till the end…”
9/7/2013: Another inspiring guest post today, this one originally a comment on yesterday’s post. Sherry kindly granted permission to move it here for greater visibility to our readers. She’s even included her own tag line.
When the autumn weather turns leaves to flame…
Oh, the days dwindle down
To a precious few
And these few precious days
I’ll spend with you
These precious days
I’ll spend with you”
The days. They are precious. Anyone who has endured the rigors of transplant knows just how precious they are. Anyone who has endured the rigors of care-taking also sees each precious day as a gift: never promised, but truly appreciated.
I just passed my 14 month birthday from an allogenic transplant for AML-6. This week, I had yet another scare when my dentist noticed some suspicious areas on my tongue. A quick referral and 4 days of staring at my tongue in the make-up mirror later, the oral surgeon reports that it’s PROBABLY just mouth ulcers from biting my tongue in my sleep, which I have somehow begun to do at the ripe old age of 61. I get to go back in 3 weeks for a biopsy if it doesn’t go away.
I hear and feel your pain when it comes to medical care post transplant…post the acute care phase where everyone is running around making sure all your systems are in order. When you start looking too good, they kinda lose interest in you. I’ve been told I’m the poster girl of their clinic, but there’s no glory in that as I continue to monitor my GVHD and deal with all the new issues that POP up.
Besides fearing relapse, I am always GOOGLING some symptom to see if I am experiencing some new GHVD issue OR did I just overdo it on the tennis court and hurt my knee? It’s so easy to hashtag everything on my medical complaint list as GVHD related.
I had a great experience at MUSC in Charleston. The team could not have been better and the hospital facility/clinic is top notch. I am trying to interface that experience with my local family practice and other physicians. So many physicians outside of the transplant circle seem to have limited understanding of the effects of transplant. For a while, I didn’t even bother with regular visits to my family practice doctor, since I was just focusing on staying ALIVE at that time. I mean, who cares if you have a small patch of squamous cell carcinoma on your arm when you might relapse and die anyway? Colonoscopy for slow-growing cancer when you’re checking out in a couple months? Mammogram for some calcifications when you’re blast count is climbing? I’m just sayin.’
I laughed out loud when I read how your friend was going to throw something if she heard the words ‘new normal’ again! Indeed. There’s NOTHING normal about this life we lead! It’s hardly predictable at all. It’s a dark ride at the amusement park…we’re barrelling along in some little twisted path and suddenly some door bangs open and a new ISSUE drops down to scare the shit out of us. Hardly amusing at all.
Status report: I’m down to 2 prophylactic antibiotics a day. I ditched the topical steroid for my mouth and have learned to live with its limitations. Most of my issues are mucous membrane related. Compared to so many, I feel lucky and blessed. I have resumed all physical activity and have great stamina. Today, I played tennis for 2 hours straight in 90 degree heat and humidity. I’m at the top of my 61-year-old game and alive to enjoy it.
I believe that as survivors we have proven to ourselves the power of positive karma and energy…some would say prayer. We have awed many with our strength of will. When I visit the forums, as I often do to touch base with my kindred souls, I am always impressed with the positive attitudes reflected in their posts revealing so many significant medical issues.
I have never given myself the leukemia excuse for not doing the things I choose to do. Leukemia chose the wrong person to mess with here! I ain’t goin’ down easy, if I’m goin’ down at all. I think I can say the same about you, Karen. “You’ve got your troubles, I’ve got mine…” and you seem to walk through adversity like Moses parting the Red Sea. When I got the news about my tongue this week, I thought about you…how you seemed to walk before me in so many ways.
Keep posting, please. Unlike your medical team, there are many of us who have not lost interest in you or the plight we share.
Yours in the fight,
Thank you, Sherry! Your words are much appreciated.