last post

Walked in the door from Houston an hour ago.  My 1st set of 3 month scans (MRI of arm, CT of chest & blood work) came back CLEAN.  Thus, the doc spent all of 5 minutes with me.  Still ... What a relief. 


I have lots of PT yet to go.  My wrist & arm remain a work in progress and I need to remain diligent.

• I can almost straighten my elbow and make a tight fist. About 90% of the way there.
• I can bend my elbow up to my shoulder pretty well, and rotate my forearm. Maybe 80%.
• My middle finger can't stand straight up, but it's better than it was after the January reconstruction and I can type.
• From a flat hand, I can raise that finger a 1/4 inch off the table.  Same when my hand is in typing position.  Both take every ounce of strength I have -- my whole body tenses up -- and my knuckle gets bright white.  Still, it's a start and when I raise both my middle and ring fingers, there's more movement.  (The hand surgeon attached the middle finger tendon to the ring finger's.)
• I can bend my wrist back about 1/2 the way of the other hand -- so 50% the range of motion. And I'm strong enough now that I can lift a full glass of water off the table (w/ effort, but still).
• Also the other way, I can bend my wrist forward about 1/2 the way of my left hand.  When I do, a line of muscle & tendon under the graft turns white -- the graft lets one see the working anatomy really well.  Of course, I never understand that I was going to lose flexibility in that direction, but it's because of the weeks in casts, which caused the flexor tendons to shrink and atrophy, and the scar tissue.
• The graft isn't quite as "stuck" to the muscle below -- the skin moves a bit.

But the real importance of today -- 6 months + 5 days from the call telling me I had a sarcoma -- is that I feel like I can put this whole lousy six months behind me.  Let's call all the clichés.  I'm going to say that cancer is in the rear view mirror now and go live my life.  Like other bad things that have happened, it's over.  Yes, I have to go back every three months for several more years and yearly forever, but I'm just going to act as if that's a waste of money because they aren't going to find anything -- it's buying peace of mind.  So, I'm not going to post on the blog anymore -- and anyone reading this should say, "That's great!"

hands are important

I saw the hand surgeon today.  He was glad to see that the graft is doing well.  He's still sorry about the tendon.  And he's still defensive about the donor site.  Today he defended the fact that it wasn't healing well and was still painful by saying he'd done a thicker graft than usual (for split thickness grafts) because he wanted to make sure it took, given the problems that exist with grafts on irradiated tissue.  According to him, a Bio-Brain dressing (like what I had last August) would have been unlikely to improve the current situation.  He could offer nothing in terms of easing pain or making the healing go more quickly.  And he said it was likely to be ANOTHER TWO-THREE WEEKS before the scab healed enough to fall off.  Aargh.

He did go off on a few hilarious riffs, though.  The last was about how losing a leg to sarcoma would be bad, but that people who lose legs can go on with their lives, and even be athletes.  What was the worst was losing a hand, especially a dominant hand, because that often meant you could lose your career, and really struggle to rebuild a life.  Spoken like a hand surgeon!

for any of you who is curious, here's what the donor site i'm complaining about looks like.  For scale, it's about 4 inches long and 1.5 wide:

reflection

One thing I noticed last night as I was considering my arm - the graft is actually smaller than the temporary graft I got in Houston.  It's close to the size of the graft from last summer.  Part of that is that if you close up the hole left by removing my ECRL muscle, there's less tissue inside.  But that was true after the December surgery.  Reid did say he'd pulled things nice and tight during the surgery.  Will be interesting to see, if and when I am able to build muscle (not the one I lost the ones that are left) whether the skin, including the graft, will expand along with the growth.  Guess we'll see.


After he caught me staring at my arm in tears last night, Bill brought me a little orchid plant.  So lovely.  I'm blessed in many ways. And Rosemary sent me some prescription-strength lavender to help heal the wounds.  Meanwhile Karen asked my permission to read this blog to her naturopath friends at an upcoming conference.  She thinks I should be using honey for wound healing. Just wish something would work.  Especially on the donor site which hurts like hell, even as it is so amazing to me that the graft itself no longer does, bacteria and pealing or not.  Drink a toast to the absence of staples.

Photos! (Don't look if you're squeamish)

Don't look if you're squeamish, but as one of my spiritual advisors says, this is what your body looks like now.  If you have to look at it, your friends and family may, as well.  Not like my forearm is going to be hidden under most clothing.  So, with due warning, here's the waffle graft:

And here's what my arm looks like without a ECRL:

The Pain Mind-Game & When 90% gets a Cheer

Dr. Reid took off his poultice this morning.  The graft looked good -- 90% took.  This was the main reason for this surgery, so this is a big success.  I don't have an open hole in my arm anymore.  Yeah!


It does have a slight odor. Reid said that reflects a common skin surface bacteria, which, now that the graft is open to the air -- and gets to be washed in the shower! -- should dissipate.  Meanwhile, the small places where the graft didn't take should fill in.  Going forward, it will heal, but the graft will never have nerves.  And, I don't know what it will look like, ultimately.  Right now, the surface doesn't look as much like a pie lattice as a waffle stamp:


He cut the stitches holding the dressing in place, removed the gauze (which of course was stuck and required pulling) and extracted the 14 staples, all without anesthetic in an open room at the back of the office (not in an examining room w/ a closed door).  That meant that everyone in the suite -- including Bill and the strangers sitting in the waiting room -- heard my yelps and whimpers. We knew that this procedure was going to hurt, but I hadn't expected to have the psychological addition of having my reaction to the pain being exposed.


2nd, he checked the tendon repair.  It was interesting to watch his face; what he saw left him puzzled.  I can still not lift my middle finger all the way up to straight.  So, the repair was not entirely (or mostly) successful.  He apologized.  He doesn't understand why, with 8 stiches, it doesn't appear to have held.  He took me to look at a diagram of the hand tendons, because he would also have expected the webbing between the fingers to have helped my ring finger lift my middle finger.  And it isn't.  So what's going on (or not happening) isn't clear but right now it doesn't work properly.  We'll need to consider whether another surgery is warranted.  But not now.  Need to heal and do some OT and see where I am in a couple months.  (Again, so much for a single surgical process that would address everything!)


3rd, he looked at the donor site.  He agreed that it wasn't healing as expected.  Again, he apologized.  Sadly, other than suggesting that I dab it with vinegar (!) or hydrogen peroxide, which might help dry it up, he didn't have much to offer, other than t continue to be patient (although some might argue I lost my patience a while ago).  It is healing, even if it doesn't look like it, just slowly.  Easy for him to say, obviously, since he's not the one trying to put a skirt on over it and venture out to professional - or social - functions.


What is most amazing, though, is that -- with the staples removed -- the pain in my arm is close to gone.  (I would note that in August, when I had the first graft, that she did without staples, the graft site on my arm never hurt much.)  But what's more interesting is that the pain at the donor site seems slightly less, too, even though nothing happened to make it better this morning.  So, my new theory is that the mind game of pain is that pain is not additive; rather, it's geometric.  All of which is good, and means (I hope) that I can back off the stronger pain meds.






 

outings

Spent yesterday and this morning dressed (and I hope acting) as a professional -- or as professional as is possible with goo oozing out of one's leg.  I wore the same skirt today as yesterday, because I oozed through the gauze and slip onto my skirt yesterday, and didn't want to trash another. 


The nicest part was staying with Ellen and Dick last night.  We got to visit, Ellen made dinner & Dick scraped the 6 inches of wet snow off my car this morning. (And, because they live in Greenwood Village -- Dick said, 'there's a large tax base' -- their cul de sac was plowed by 6:30 am.  Unbelievable -- Boulder doesn't plow side streets, let alone cul de sacs)!


I've decided my arm hurts so much because of the staples, since it's only around the edges of the graft.  Presumably the staples will come out when he takes off the poultice covering the graft Monday am.  So it's really a matter of getting to Monday morning.  That shouldn't be that hard, right?  Just need to figure out how to dress for the JCC gala tomorrow night without trashing the gown.  (Answer will involve lots of gauze and tape, I'm sure.) And hope that everything else doesn't implode. 


For example, Ben stayed home from school today because he's sick.  Even more indicative, he skipped climbing team practice yesterday.  Today, he missed a big test.  He has tons of homework.  He feels awful.  There's the final climbing comp of the season tomorrow.  And of course there's the Super Bowl Sunday.  Still, our neighbor Marion brought matzo ball soup ("Jewish penicillin," she called it), which perked him up enough that, after having eaten little during the day (for him), he was disappointed there weren't 2nds.


Meanwhile, Bill's on the road as I write this, trying to get to Vail to take advantage of the 24 inches of snow they got last night.  After having had Vail Pass closed on and off since sometime last night, throughout the day, the police closed I-70 at Empire because there was a shooting and high speed chase.  The frontage road is open but CDOT says to expect a two hour delay (so the 2 hour trip becomes 4).  The place he's staying won't consider giving him a credit for later in the season until their reservations staff returns tomorrow morning.  And he knows he has to be back and dressed in time for dinner tomorrow.

Take the good news where & when it comes

The infectious disease Dr. looked under the bandages, proclaimed no infection, rewrapped my arm (minus the dried, blood soaked gauze that has undoubtedly been contributing to my discomfort and sent me on my way.  Yeah!


Last night, after a miserable previous night, I took the real narcs and installed rolled gauze barriers around the donor site.  While I wouldn't say I got a great night's sleep, I did sleep and only had a little oozing, so I'm considering that a victory as well.


Fingers crossed for the 12 hours of meetings in South Denver tomorrow ...