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.