short strokes

I had been thinking that there'd be nothing to post until I went to see the plastic surgeon next week.  After all, my surgery has been set for almost two months now.  My arm has healed from the radiation.  The logistical planning was, at long last completed.

Then, this morning, I got a call from the cancer surgeon (Satcher)'s P.A.  Satcher needs to go to Europe for 3 days (never mind) and will be gone on 12/11, the day my surgery is scheduled.  So, my choices are to reschedule -- she offered 12/13 (only 2 days later), or to have another oncological orthopedist do the operation. 

So there were a couple funny things.  First, after my conversation with her, THEN the doc called.  I'd gotten out my rage and dismay by then.  It reminded me of when Ben's pediatrician would come do his examination and, when she was done, send her nurse in to give him the shots.  Just in reverse in terms of timing.

When I suggested to Angela that this was easy for them to do, because they don't care about how many hoops might have to be wiggled through, again, or the costs of rescheduling, or the lost costs of all of the hours of planning that had already gone into fitting the jig saw puzzle together, she protested, "Don't say we don't care -- we do!  We'll send the airlines letters for you!"  Thank you, of course.  But the level of under-appreciation was just stunning.  And calling two weeks out...

I counted after we got off the phone:  There's 7 people traveling, including me.  Two (me and Bill) are traveling twice, so there's nine roundtrip plane tickets.  There's five different hotel rooms, some with multiple people arriving and leaving on different nights, for a total of 17 nights.  There's the pet sitter for 5 nights, and one sister-in-law, both of whom will be using the guest room.  And, of course while our family doesn't celebrate Xmas, the airlines and hotels all price accordingly -- and have availability commensurate with holiday travel, especially when we start to have to change reservations this close out.

As I said on Facebook (in 160 characters) AARGH.  Never mind that they were supposed to get back to me by COB today with an answer on whether my request to reschedule earlier, the Friday before, 12/6, would work, as opposed to two days later.  While two days later is "only" 48 hours difference, it totally screws up all of the plans of friends and family coming and going.  And, it pushes the required post-discharge stay in Houston to last a whole week, including Xmas.  It was also ironic to me that, team approach notwithstanding, Angela said she'd never heard of patients being asked to stay for a week post-discharge, something the plastic surgeon's Physical Assistant had said was an automatic request for all patients traveling to MD Anderson by air!

When she and Satcher called, interestingly, they had not talked to the plastic surgeon.  One of the odd things to me is that he is -- in my mind at least -- just as important as Satcher.  I can hear Eve saying right now, "it's not rocket science."  And maybe neither is the reconstruction.  But to me I want the reconstruction to be 'art' in a way that the cancer removal can just be mechanical, albeit done just right.  But that part doesn't need to be beautiful in the way that the reconstruction does.  The latter is my quality of life, after all.

a very important person

(originally written 11/13, but forgot to hit post)

Because I'm a sarcoma patient at MD Anderson, the  plastic reconstruction surgeon who will put me back together, and in one sense determine my future quality of life (assuming that I beat the risk of recuurence or metastisis, either because the cancer surgeon and pathologist are brilliant, or because the radiation therapy killed all of the cancer cells, or both) is listed as a consulting physician.  The hospital originally scheduled me to see him on the day before surgery, to save me an extra trip to Houston.  This may have happened because I was annoyed with being told to fly to Houston on short notice for a day to see their radiation oncologist, only to be told she couldn't say anything to me, or do any treatment plan unless I committed to doing the 5 week course of radiation in Houston.

Regardless, I thought it would be good -- and to me it seemed important -- to see this VERY IMPORTANT PERSON for my future life enough in advance of the surgery that he would have time to consider what he's going to do.  So, I'm now going to see him the week prior.  I'll fly down for the day, so all it will cost is airfare (I love SW -- <$200) and a taxi.  Since all he's seen to date are my files, which show only my arm, this will allow him to see my whole body.  While it is possible that, even taking a safe margin, enough of my muscle will remain that they don't need to supplement it to allow me to live a life that includes cooking/chopping, as well as grabbing bike frame handles and ski poles, all this doc may need to do is a skin graft.  But, it is also possible that he needs to do something much more complicated -- splitting the muscle on the bottom of my forearm to run some of it to the top (necessitating Occupational Therapy in addition to physical therapy), harvesting muscle/fat/skin from somewhere else in my body, like my lat, because there isn't enough muscle left on my arm, or harvesting muscle/fat/skin/tendon from somewhere lese on my body, like maybe my gracilis (a muscle on my inner thigh)).  Or something else. These are big complicated surgeries and I'd like the surgeon responsible to engage in some forethought.

I guess I'll talk about some of the other logistics tomorrow.

conceiving a TX vacation

I am working through the logistics for being in Houston for two weeks.  So far, we have plane tickets for all of us.  Bill and I have rooms for when we get there.  I found a cool B&B not far from the hospital for when I'm released and BDau helps me re-locate from hospital back to wide, wide world.  Still working on the 5 nights with Bill and Ben that will (am I really saying this) constitute our winter break vacation.  I'm hoping to get a little cabin in Seabrook, which is east of Houston on the Bay, and close to NASA.  The NASA site is amazing -- visiting Mission Control, and the training center, etc. is like going to Disney Land.  The 5 hour tour is $90 and limited to 12 guests.  Bill and Ben can go have a ball looking at all the old and new tech.  Seabrook also has a marina, kayaking, birding (not that we do that, but the fact that every website talks about it suggests that the place is at least somewhat natural) with a nearby wildlife refuge.  There's 10 miles of bike trails (Bill can do 10 loops).  I'm hoping we can make it a decent trip for them, while I convalesce.

I saw two friends today, neither of whom I'd seen for a year, both of whom offered words of comfort and sympathy.  I'm so lucky.

one month from today

sorry it's been a while since I've posted.  Nothing much has changed wrt my arm.  Actually, that's not entirely true.  The swelling has gone, the pain has mostly subsided.  I'm onto my second round of peeling.  But it's within the realm of tolerating.  Most of the time, it's fine.  Itchy, occasional flashes of heat or hurt, but no big deal.

One month from today is my scheduled surgery.  Still scary.  Still planned.

MD Anderson did change my appointment with the plastic surgeon so that I see him not the day beforehand, but the week beforehand.  That makes more sense to me -- I would like him to be thinking about this in advance.  Especially since I realized it's not David Chang, the full professor who has published articles about extremity reconstruction, but Edward Chang, an assistant professor, who's published about necks and mandibles (jaws, right?).  Still, I know this is the guy Satcher wanted.  He's young, super smart and I'm sure I'll be much relieved and encouraged when I do meet him. 

Meanwhile, I've been spending lots of time trying to figure out the logistics of being in Houston w/ multiple different people over a two-plus week period who have different interests and needs with the right kind of lodging in the right location, etc.  Very time intensive.  I wish there were a single website that would have the answers, but it's a challenge, especially not knowing the neighborhoods.

And, also meanwhile, my mom was here this weekend.  We got off to a bit of a rought start, when I ended up driving down to DIA twice on Friday b/c she missed her flight.  I arrived at the airport to discover she wasn't on the flight I'd booked for her.  She had written down the wrong departure time, so arrived at the airport late.  But I wasn't going to wait at DIA for 4 hours -- better to drive home (thankful for the hybrid) -- and back and have two hours at home.  She did leave a message on our home phone, but of course I didn't get that until I got back from trip #1.  It was a gorgeous weekend here, and I really appreciated her coming out -- it's a big effort for her.  Another of her friends (our neighbor growing up) died last week.  From that standpoint, she's doing great.  But she's tiny (she conceded she weighed less than she ever had as an adult), like a china doll.  You just want to protect her.  She said she'd come out after the surgery, but I worry that her being here would add to Bill and Ben's burden -- to take care of her as well as me -- so that's a little tricky.  We'll see.

a good night's sleep

The restorative power of a good night sleep cannot be over-stated.  Hurray for 7 hours!  My pain level was down enough for the 1st time in 10 days that it didn't wake me up @ 3.  Definitely feels like I'm on the mend.  In body and spirit.  The latter is just as important, from the standpoint of this household, too. 

Bill and I took a bike ride (he was kind and went slowly w/ me) this afternoon in the glorious autumn sun, with snow on the peaks and pretty leaves still on some of the trees.  Vicki came by to catch up and brought chocolate and an amaryllis -- gotta love Boulder.  She was on her bike and pulled the amaryllis out of her daypack! 

Got a text and an email identifying my friend Eileen from DC as the sender of the two dozens truffles that arrived Friday just before Mary and Rick arrived for Shabbat dinner and margaritas (that's traditional right?  Along w/ ravioli?).  They were yummy, but the package did not include a card, so I had to do some sleuthing.  Just like around my birthday when several chocolate bars showed up and all Ben could say was that it was "one of my friends" who brought them.  He eventually provided more identifying information and I was able to discern that the gifter was Wendy, who's now brought wine AND chocolate!   

And we had fun -- and awesome food, as usual -- at the Cooneys last night.  A belated birthdays dinner.  With Michael and Joanne, too.  And Emma and Ben deigned to eat with us, even, although they quickly retreated after dinner.

All in all, it's no wonder, I think, that, while most people who have radiation therapy lose weight, I've gained five pounds!