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 ...

slow slog

not much in the mood to post.  Still feeling pretty sorry for myself.  I talked to the Dr's medical assistant today who basically said I was describing nothing unusual.  So, it's normal on the 7th day post-surgery to still be in this much pain, to have my donor site be oozing, to feel like the graft site is tearing away, etc.  He did say it was fine to cover the donor site w/ gauze and go out.  I will, but I need to feel a lot better if I'm going to make Thursday's 12 hour day of professional meetings.  Hard to imagine, although I certainly would like to think it's possible.  All I am doing is whining, though, which I hate.  At least I made dinner tonight (albeit w/ no fresh vegetables that require chopping).

no photos!

Arm/hand are sore, albeit w/ periodic shooting pains.  Wrapped from wrist to elbow, w/ wrist immobile.  No peeking until 2/3 – a long time from now, and to be typing one-handed. 

The thigh donor site wound stings like crazy, even at a margin of more than an inch around it, which I don't understand.  It hurts more if I move, including just walking, but that's consistent with my memory of last summer's graft surgery. 

Bill and I took off the tape and released the blood bubble yesterday afternoon, resulting in a Psycho-like moment for the shower.  My sweet husband, who really hates blood, was very brave.  The Dr. wants the wound open to the air.  Since the scab is still oozing, this means walking around w/ no pants.  I have on one of Bill’s cycling leggings (on the good leg) and then socks and slippers.  It's a beyond-scary get-up, honestly!  Can’t go out, obviously and can't really have visitors.  Annie came last night and brought dinner, but didn't want to look, so I blocked her view with a pillow.  I can only hope that the scab hardens up enough to wear clothes by tomorrow.

back to 1-handed typing

the Dr said surgery went fine (but when do they not?).  Was home by 6, slept until 10, had a bowl of chicken soup (thanks Linda), helped Bill pill the cat and went back to bed.  The good news was I didn't need to take any narcs - the lesser Tylenol based pain meds have been enough, since they loaded me up in post op.  I know that may change today or tomorrow, but so far so good.


He did remark to Bill during his report that the tissue damage from the radiation is still much in evidence.  He wrapped my arm from wrist to elbow, and won't take the bandages off until 2/3 when I see him next.  he did say I could start using my fingers, but today, at least, my hand is too sore, so I'm typing one-handed, again, for the next little while.


What he did to the donor site on my thigh is wild.  There's no dressing other than a thick sheet of plastic tape and a single piece of gauze, which is already blood soaked and almost not visible.  He wants me to take the tape off today, in a shower or tub, because it's holding back this large pool (or big bubble) of blood!  I'm not even going to post a photo because it's too gross. Then, I'm supposed to leave it open to the air to let it scab up, over the gauze, which serves as scaffolding.  As it heals the edges will come up and we'll cut them off with a scissors. He said I could shower and just treat it like any scab.


I am compelled to note that this is almost exactly the opposite of what the plastic surgeon did in August, who's goal was to keep it moist as long as possible.  He did say he took a thicker slice of skin than she did. He also joked that he didn't use the bio-brain dressing she did because it was expensive (at least I hope it was a joke -- he did add that he didn't think that method worked as well). I'm waiting for the site to start to hurt, since my memory of August was that it was the main source of post-op pain.  We'll see.

S Day tommorrow

Tomorrow, I'm having a surgery that will, I hop, launch me on the road to recovery.  Today, my hand/arm was good enough that I made soup for dinner.  Stock from the left-over chicken Annie brought is last week, during the early afternoon and the soup later.  I used the cutting board for disabled persons that Hunter brought me, and chopped onion, carrots and celery.  I managed to wrestle the bread maker out of a cupboard, never mind the stock pot.  This is, of course, the best my arm/hand are going to be for a month, since I'm hoping to wake up from tomorrow's surgery with a splint on my hand from tendon reconstruction surgery.  That will last at least three weeks.  So, it will be February before I'm even back to where I am now, let alone better.


Still, hope is an amazing thing.  And just knowing that this surgery will happen leaves me upbeat. 

• Yes, the lattice work graft that Reid described is not going to be as pretty as the short-lived graft I got in August.  But it should heal with fewer risks.  And honestly after the last four months, it's not being beautiful is OK, as long as it closes up the hole in my arm, and doesn't get infected.
• Yes, I'm a little nervous about Reid's split thickness graft healing procedure, where he wants it to dry out and scab up.  Yuck. And, sounds itchy, and more likely to make a gnarly scar.  But, given that my donor site is not still not completely healed, I guess may be I need to do this as a comparison to see which approach is really better.  What I want most is for him to decide that there's still on my right thigh for a graft so that he doesn't have to use the left.  With the latter, I'll have a lame right arm and a lame left leg and will get no sleep at all for the first couple weeks!
• And yes I'm a little nervous about tying my one finger's tendon to another.  This cascade of permanent disabilities freaks me out.  But, it also sure seems like it will improve the current situation.

So, fingers crossed.  Bring it on.

Tuesday

I am set for surgery here in Boulder County to get a skin graft on the open wound on my arm and fix my tendon (by attaching the severed/damaged middle finger extensor tendon it to my ring finger's) next Tuesday.  I'm psyched.  Dr. Reid removed the VAC and said the wound, which is much bloodier than it was two days ago, and certainly than it was last week, looked great, ready.  He did not think it would be a problem to do the tendon surgery at the same time, although he would also have been fine waiting. 


Bill's family has this running joke about when things will happen (answer:  Tuesday).  The answer is always Tuesday when the real answer to the question is either never, when the cows come home, or how do you expect me to know?  Still, I'm hopeful!


Tomorrow, I'll send the VAC back, get myself discharged from home health care (for VAC dressing changes) and tell MD Anderson I'm going to continue to be their patient for sarcoma follow up, but not for plastic surgery and reconstruction.  That means I'll need to go back to Houston in March (90 days) for scans.  But not try to play this crazy game about wanting definitive answers about dates when they aren't comfortable providing them long-distance.


I'm unbelievably psyched given that I know this surgery is going to be painful (based on August, at least, when the graft was excruciating) and require -- once again -- lots of OT, both because of the tendon and repair and to continue the forearm recovery.  But that's my Meyer Briggs J personality coming to the fore.


I wish I could report that the cat is better as well.  But, sadly, I can't.  He's eating at least, and not just shrimp but ordinary kibble.  However, he can barely walk.  It's like his legs are so brittle he can no longer jump down from things because they might break.  If this condition doesn't improve by Saturday, we may be ready to make the tough decision.  It's just too sad to watch him trying to move around.

course correction

I went to MD Anderson in Houston because they're world renowned in cancer treatment, and they had a sarcoma center, so were one of  the relatively few places in this country expert in my weirdo soft tissue sarcoma.  I did not go there because they were the best around for grafts or even hand/forearm/wrist reconstruction.  So when Scott Oates, the plastic surgeon finally deigned to call me back yesterday evening, and objected to my "trying to pin him down" on when the next surgery would be, I began to tilt.  Then, when I asked whether at least, when the next surgery did happen, he could say that he would also fix the tendon that got nicked that causes my middle finger to droop, and he said NO, he would not do any reconstruction when he did the graft, I fell off the cliff.


I no longer have cancer.  I will need to go back to MD Anderson every three months for the next two years to verify that status, then twice a year for three more years, then annually thereafter.  But, last night, I began to question whether it really makes sense to go down there for something that our plastic surgeon friend calls "basic" surgery -- a skin graft.  Or hand reconstruction when we have some of the best around here in Boulder.  As dicey as it seems to change courses, and doctors, at this stage, I decided it may be nuts to try and do these next surgeries in Houston, when there's also benefit to being able to see a doctor locally who can assess whether I'm ready, healthy, healing, etc.


So, I'm exploring having the graft and reconstruction done here.  I have an appointment Thursday afternoon.  It would certainly be easier and less expensive.  I would miss less work.  I wouldn't have to stress about the constant changes in schedule.  The last five days have been crazy.  Maybe I don't have to let this craziness overtake my life.


The infectious disease doc said he thinks the redness left in my arm is not an infection -- and he had his partner and their Yale intern look too.  My OT works at the practice where I'm going Thursday to see the hand surgeon.  Both our plastic surgeon friend and my internist recommended the same hand surgeon.  Maybe this is the right course.  Should know Thursday evening.


Meanwhile, I have to moderate a panel at the Supreme Court tomorrow before a standing room only crowd (185 seats).  I think I'm going to untether from the VAC machine at least for that hour, if not the whole event.  Somehow, bubbling doesn't seem especially professional.

JFC

The plastic surgeon's nurse just called to say she had mis-communicated with the Dr and in fact he doesn't think my arm will be ready for surgery on the 17th.  He told her "a couple weeks" (apparently the 4-6 week window he gave me, with the 17th being 6 weeks, is not hard and fast -- shocking).  When I asked whether the two week extension was from today or the 17th, of course, she couldn't answer.  Meanwhile, the Dr is in surgery today and so I may not hear from him until Monday about a new date.  I can't even begin to express how this makes me feel.  Once again, my and my sister-in-law's plane tickets purchased; hers will have change fees.  But mostly it means another couple weeks on the VAC, which I understand is trivial in the big scheme -- and means I have an arm, so why am I complaining -- but really, really makes me crazy.

Happy Birthday Mom

Still now word back from MD Anderson re: how long I have to spend down in Houston after the graft surgery.  And -- out of the  cast -- my arm is now killing me, it's so sore! The OT says this is completely normal, b/c the muscles are having to work again, and one of them isn't there.  So all the work on the extensor side of my forearm is being done by tendons, which are tight.  Plus my arm is happiest in the sideways aspect that it was when held in the cast, and the fascia that holds it there has also tightened and weakened.  Ugh.


The better news is that we were allowed to bring Smokey home from the hospital yesterday before dinner.  He's pretty weak.  Bill and I have the unenviable task of giving me multiple pills twice a day.  But this morning his breathing was no longer labored and within normal beats-per-minute range.  He's drinking a ton, consistent with his  being on a diuretic (to pull out the fluid in his lungs).  Unfortunately, he still hasn't eaten anything, so we're hardly out of the woods yet.  And, even if the acute phase smoothes out, it's still 'end stage' heart failure.  At least he spent the afternoon sleeping in a sunbeam.


It's my mom's birthday today -- Happy Birthday Mom!

can our family get a break, please?

Yesterday's good news was that the infectious disease Dr took me off antibiotics (after 2 1/2 weeks) because he saw no more sign of infection.  Today's good news was that, after three phone calls to MD Anderson, they finally called to tell me they scheduled surgery for 1/17.  A next step -- hooray.  Of course, the nurse who called told me I would need to spend two weeks in Houston (really?!  I was prepared for one) following the outpatient surgery, so we're in negotiations about that.


But the sad news today is that Smokey, our 10 year old cat, is spending the night in the hospital.  Ben picked this cat out at the shelter Labor Day weekend 2003, when my folks were visiting.  Smokey grew from fluff ball to big kitty pretty quickly.  The year before Val arrived he tipped the scale at 15 pounds, and the vet told us to put him on diet food (RD -- Reducing Diet).  He lost a pound, but then the dog came, and while he remained on RD, he actually gained weight.  Of course, as Bill frequently pointed out, that had to do in part with our working from home.  He either had a full bowl, or he was swatting at the mice on our desks.  This cat greeted everyone who walked in the door, demanding pets, or some acknowledgement.  He also gave love bites.  And he let Scott Yates (but none of us), lift him high in the air and turn him upside down.  (He also bit Scott's boots.)  He fought Val for the highly desirable front hall carpet and prevailed about half the time.  He also groomed Val periodically (because we know that no dog is clean according to a cat's standards). 


By late 2012 he weighed 17 pounds.  A week ago, I caught him eating the dog's food when she'd be interrupted in her meal by a walk.  But New Year's Day he didn't eat.  The vet on Saturday detected an arrhythmia, although his blood work came back normal.  He didn't eat for the last couple days, though, even after I bought him real food.  So this morning we got serious.  Bill spent four hours at the vet hospital this afternoon (Ben and I spent two, after Ben got out of school -- what a great first day back).  They did an Xray and an echocardiogram.  Put him on oxygen and a diuretic, which can apparently help with the heart disease.  He's got both an enlarged heart and thinning of the muscle walls.  The outlook is not good.  Bill and I might have made a different decision (even if he responds to treatment, the vet called his disease "end stage" so we're talking a few months), but Ben wasn't ready.  And Smokey is his cat.  So we'll hope Smokey responds to treatment over night.  And if not, we'll reassess in the am.  Meanwhile, I'll take Ben out there one more time tonight during visiting hours.  We can't hold him, but we can pet him through the little window in the oxygen tank.

wrist

Still tethered - still annoying.  Happy New Year.

The good news is that, today, I realized I could lift my wrist,, if it's on its side (so I'm not fighting gravity), 25 to 30 degrees up.  To you, I'm sure that seems trivial, but to someone w/o the extenros muscle, It's very exciting, actually.  The OT was pretty excited herself.  And I picked up 15 degrees in terms of straightening my elbow.  Also good news. 

I'm even typing this -- sort of -- with two hands, which is a big improvement, except that, with my middle finger tendon severed, I can't really type with my right hand.  But, I'm hunting and pecking.  Given how hard the typing is, though, I'm really hoping he'll be able/willing to fix that in the next surgery.  Also, using my right hand is very tiring.  I can feel it all the way down my wrist and into my forearm. Lots of work to do.  2014 will be my year of rehab (I hope).

Meanwhile, I saw the infectious disease doctor's nurse this morning.  She took off the VAC to look at the wound. For some reason, she cut its hose, when I wasn't paying close enough attention.  This, then necessitated a special trip out to the house by Rachel, my home health care nurse.  However, Alicia, the infectious disease nurse, thought my wound looked a lot better, in terms of the infection, although she also extended my antibiotics for another week, because it is definitely not gone, yet.