FAQs

Today's format is just a bit different.  Since I don't have a lot new to say today, I thought I would try to answer some of the questions I've been asked.  If you haven't noticed by now, I'm not really easily offended, so please ask if you are wondering about something.

Might as well get Barbara's question out of the way: Scars.  How many?  Easier to enumerate them.

Back of left knee/right Achilles tendon-- Run away horse + barbed wire makes for some impressive scars
Four small on abdomen -- bye bye gall bladder (3" x 2" x 1" stone, I always was an overachiever)
Sternotomy scar -- open heart surgery to repair a valve.  too bad the repair didn't hold
Scar from just behind left armpit all the way to just behind right armpit --breast reduction-- follows the trajectory you would expect
Scar running from just behind left ear to just behind right ear-- this new scar encompasses the previous scar on the right side of my neck as they went through the same incision
Tip of chin down to ear to ear scar
Trachotomy hole
12" long S shaped scar that intersects the scar behind my left armpit -- they took the skin and muscle piece to make my flongue.

I really am a big game of connect the dots.

Is it hard not to eat?

Well, it is hard not to put stuff in my mouth out of habit.  Food sounds awfully good at times and sometimes you just want that little bite.  The realization that I would likely aspirate it into my lungs or choke to death draws me up short.  Also, there will likely only be taste sensation in the very back of my mouth. Thanks to radiation, I know what eating food that tastes like nothing is like.  Not usually worth the effort.  I am feeling much better about putting real food into the feeding tube, though.  Also, there is a chance I will eventually be able to eat, or at the very least drink.

Does the flongue move?

No.  If they had been able to salvage even a scrap of the base of my tongue, I would have had some movement and it may have even grown some taste buds eventually, seeded by the tongue.  Because they could not spare any, it will not move.  There is no chance of me biting it because there is no way for it to get in the way of my teeth.  It is a space holder to preserve the structure of my mouth and to help somewhat with talking and eating.  They will make me a palatal prosthesis which will lower the roof of my mouth. That should also help.  It will click in and out like a retainer.  The best part is, the doctor who does that is in Eugene.

Aren't you in pain?

Lucky for me I am fairly oblivious to pain.  I don't why that is.  Big pain I can handle.  Little pain-- pulling off band-aides, digging out a splinter, or shots may me cry.  Needles and blood make me pass out.  My least favorite thing is some doctor/nurse telling me what they are doing every step of the way.  Just do it and get it over with.  Right now my rear still hurts more than anything.  I know, ridiculous.

How can you have such a good attitude?

I don't always have a good attitude.  As Anji so nicely summed up in a comment, mourning sucks.  I have to mourn the old life I had, but I have to accept my how my life is at this point.  I've cried.  I've gone to sleep hoping that this was a bad dream (mostly before the surgery).  But, I am alive.  I can walk.  I can "talk."  I can eat not nasty formula from a can.  I can drive.  I can do many of the things I did before the surgery.  No, my life will never be exactly the same.  But it surely could be a lot worse.  Also, the pain the month before the surgery was brutal.  Eating hurt.  Sleeping hurt.  Just being still hurt.  This is better.

I have known people who did not make it out of their teens, their 20s, their 30s.  Be it fatal accident or malingering illness, what would they have given to keep on living?  I have friends that have battled cancer for years, never completely escaping it, just waiting for the next assault.  I pray that I am done with this.

There is always hope for the future.  Maybe they will be able to grow a tongue in a petri dish.  Maybe they will be able to inject stem cells and turn the flongue into a tongue (that sounds like a job for Letterman!) Maybe my body will do something no doctor has ever seen before- it wouldn't be the first time.

Confession time:

I've known all my life that my heart wasn't quite right and no one really knew what that meant for the future. Would I die young?  Would I be able to have children?  Would I need surgery or a transplant or???  In the late 60s and 70s, they just didn't know that much.  The technology didn't get good enough to identify my birth defect until I was 22 years old.  When you live your whole life with that, it changes your perception a little bit.  I sure didn't think about it everyday, but then it would come looming up when I was explaining why I needed antibiotics to go to the dentist or why my fingernails were blue.

Cancer was never on my radar screen.  I had multiple biopsies.  Even the admonishment from the oral surgeon in Las Vegas, "Stay on top of this because the only other person I've seen with this waited too long and it was too late for her."  Granted, heart failure and open heart surgery will distract pretty much anyone.

Every doctor says, "Well, once you've had cancer, you can't ever count it out."  But I did.  I didn't think it would come back.  In the last year, I saw the oncologist twice, the dentist twice and the ENT at least five times.  I had two benign biopsies.  The oncologist said, "Nothing in there raises my hackles."  But all of them focused on the right side.  Not one really paid attention to the left.  Where it hurt.  Starting in February.  Can I change any of that now?  No.

One of the biggest struggles in my life has been trying to figure out what the universe is trying to tell me. When something gets hard, does that mean try harder or that you are on the wrong path?  I've always said there is a fine line between courage and stupidity.  I've bounded over that line many times.  I met the man of my dreams when I was 13.  We shared an apartment in college (ironically with my first husband) and neither of us figured it out.  When it takes you 20 years to figure stuff out, the powers that be get a little irritated with you.  Was I not meant to be a teacher?  Did I make some other wrong turn?  I've been dealt this hand for a reason and I need to figure out what that is in less than 20 years.

I have a thousand things I want to do, as evidenced by all the things I've saved.  There are more amazing things in the world that I want to learn, see, do, and experience. Be with my amazing husband now that we finally figured it out.  I want to see my children grow up, and see my grandchildren.  I'll always be grandma who talks funny.

Ultimately, I've always wanted to make the world a better place.  I've protested against nukes, crusaded for animals, promoted food safety, and volunteered for dozens of causes.  I like to help out.  I want to wash while you dry, not sit and watch.  I want to help people find people who have knowledge they need.  What is the point of remembering everything if you don't use it for good?