Mapping the Brain

Friday morning, as I was waking up, I became aware that it was raining.  This is a pretty unusual event in Boulder -- maybe a 1/2 dozen times per year, in most years.  Having grown up in the mid-west, it's usually a comforting sounds, one that warrants rolling over and snuggling in for a bit.  While that was my very initial reaction, within minutes, I found myself bolt upright in bed.  I ran to the basement to ensure that we weren't getting any more flooding.  (Of course, we were not.)  Even though we did get a 1/2 inch of rain Friday, which in a normal September, would be a heavy precipitation event.  Not this month, though.  One of my friends (Linda, from Ladies Night), attributes this to what she calls "community PTSD."  We're all traumatized by what happened and are all reacting in abnormal ways.

Friday's radiation was # 8 of 25, so almost 1/3 of the way through.  By next Friday (5 more treatments), I'll be just over 1/2 way through.  Seems good, especially since I don't yet have any side effects.  My graft is pretty red these days, but it doesn't hurt.  And, maybe it's pink from growth, as opposed to red from radiation.  I'll say the former given the absence of pain.

I ran into one of my former employees today hiking on Sanitas with Val.  He isn't reading the blog, and isn't a friend on Facebook, so he knew I had cancer but not much else.  In giving him the short version, I realized that, because I can't imagine really being disabled, I have decided that I shouldn't -- and won't, try.  Rather, I will talk only of a future where, a year from now, I'm living the same life I live now, and where the idea of having had sarcoma seems as distant as the idea that I was once married to someone other than Bill Goelz.  But what's truly amazing about the human mind is that I can hold this thought equally in my brain as another synapse secondarily works on a more dire scenario.  Such an amazing tool we have! 

Last night, we had sushi with friends and then went to see the movie Rush, which is Ron Howard's new film about a big rivalry in the world of Formula 1 car racing in the 1970's.  Needless to say, neither Susie nor I had ever heard of either the men in the rivalry -- or anyone in the movie, other than its passing reference to Mario Andretti.  On the other hand, Bill leaned over at one point and whispered to me that he's been at the race they were showing on the screen.  It's always amazing to me that Bill and I are the same age; we both went to college in New Hampshire; we both grew up skiing, and we have so many commonalities.  And yet, the maps we carry in our minds of the important historical events of our parallel childhoods, never mind the personal events, are so completely different.  I wonder whether that's still true -- that the maps we are creating in our minds from the last 18 years together are just as different, even though the events are shared.

Stress Levels

Stress levels are high in our household.  Looming over it all, of course, is the sarcoma.  But, in addition:

· We've still got flood repair work to do, and Bill thinks he smells mold in the basement.  At least Kevin Holiday agreed to do the painting anytime we’re ready.  And he offered up his nephew again for drywall work. 

· Ben is doing fine w/ work he does, and quizzes/tests he takes, in his High School classes; however, he has turned in a shockingly tiny percentage of his homework. So, his current "grades" are poor because there’s so many zeros averaged in.

· Ben wasn't acting at all concerned about this situation, until his coach called him on it (as did we) Monday.  Now, he's angry at us and claims that he's stressed, associated with starting High School, my cancer and the flood -- even though the latter two are things he had previously consistently denied were stressful.  We expected his transition to high school to be difficult, both because we know he has previously done poorly with school transitions, and because it mostly didn't matter at Horizons whether he got his homework in on time or not.  Because he's had issues with not getting his work done on time previously (dating at least back to 2nd grade!), on the one hand it's hard to accept that it's the transition causing the problem.  After all, his pattern is the reason he has a coach.  It's also hard to believe that the flood has anything to do with this -- certainly during the 4 days he missed of school, he didn't act stressed at all.  Thrilled more likely. 

· Bill has let Ben know how seriously disappointed he is with Ben's school situation.  As a result, they are barely speaking to each other.  Ben is locking his door and rarely taking off his headphones (he showed up with them on for dinner one night this week, although I quickly disabused him of the idea that that would ever be OK).  A couple days ago, he went out to the garage to do his homework (“because it’s isolated”).  It's going to be a long, hard weekend.  Ben will miss a competition because he has to get caught up in at least two of the four classes where he’s got late work (plus keep current on all new assignments).

· My husband is not getting enough exercise.  This causes him to lose weight (5 pounds).  The women reading this blog will understand how unbelievably unfair this seems.   Bill's not getting exercise also means he's getting more headaches.  He asked earlier this week if he was turning into a grumpy old man.  (No, but he is a little jumpy -- as are we all.)  And several of my friends say they've noticed how stressed he is.

· I am not getting enough exercise and I am eating and drinking too much, which is my normal stress response.  Therefore I have gained five pounds since Labor Day. The trails around Boulder, at least the ones on Sanitas, closest to our house, remain closed.  The Camera this morning said they had sustained over $40M in damage.

· At Ladies Night last night, I ordered a cup of tea (because I got there late), and a glass, because Donna and Susie had a bottle of wine to share.  My glass and mug arrived.  Donna handed me the bottle.  I started pouring into my mug.  Just a tad distracted.

At least last night at Simchat Torah, there was dancing and singing under the stars, as our Congregation joined with the Congregation of Bonai Shalom, which is currently using our synagogue’s south building because theirs was even more damaged in the flood.  That was lovely.

wishing it were me

When I got to radiation today, there was a gaggle of folks standing outside the building with balloons and signs, celebrating that it was the last day of their father's/grandfather's radiation treatment.  Very fun, but it made me sad (because I'm so not done) -- and almost induced a panic attack by the time I was finished. 

Funny, mostly I feel like time goes way too fast and am always wishing I could slow things down.  Now, however, I'm feeling more like a little kid.  I can't wait for my birthday (since it's the last day of treatment).  I want time to fly!

eye of the beholder

Radiation day 5 (20 to go).  I had my first weekly check-in with the radiation oncologist, Antell.  quite a character.  Reminds me each time I see him more and more of Bob Percival.  I don't think many of you reading this blog know Bob.  He was at EDF w/ me and then became a professor at University of Maryland Law School.  He's a bit awkward around people because he's beyond smart.  Bob was a Supreme Court law clerk; Antell announced to us during our first interview that he'd been #1 at Penn Medical School.  But, also very shy.  So he forgets to look at you when he's talking until, all of a sudden, a brain wave fires, and he looks up and makes eye contact ("oh right.  I'm supposed to connect.")  And he's also half talking to himself, out loud, during at least half of the conversation.

Next week, I'm supposed to bring Bill to the check in because the Doc wants to show Bill how cool the treatment plan they did for me really is.  Because I'm not an engineer, apparently, I can't really appreciate the magnificence of what they did.  Actually, he showed me a couple slides and it's pretty cool.  Sadly, it also reveals that there's at least one part of my arm bone that is being directly exposed to the beam and will thus be at a higher risk of shatter down the road, weakened by the radiation.  Not that I don't know two women who have shattered their wrists/arm bones from that fall, the one where you put out your hand to stop yourself.  And neither of them had had radiation, so who knows how much worse the treatment makes this.  Just have to be careful.  And, because I'm me and not my husband, that will not less hard.  But, because I'm me, and therefore more of a spaz, than my husband, it will also be harder.

Antell and I did have a conversation about how the cross cut images of the way the radiation beams bend around the bone is so beautiful it's art.  He seemed shocked that this had occurred to me.  But I told him that there are websites with art done by sarcoma (and other cancer survivors) of their cells.  For example, see, http://blog.tedmed.com/?p=3491. Amazing how anything can be beautiful in the hands of an artist.  Black and white photos of mill tailings or Salgado's workers toiling in the copper mines.  Photos of cancer cell stains.


As hoped, my anxiety level has gone down over the course of the week, although I still get a spike during treatment -- more right after than going in.  But, at least today, that spike is less than the spike caused by looking at my son's current academic standing.  Or my husband's reaction to looking at the on-line school site regarding Ben's homework and class status.  Suffice to say that the situation is dire.  And Ben's blaming it on stress (from the flood, but also from this cancer.  And from the high school transition).  Of course, the fact that Ben's had trouble getting his homework in on time for as long as he's had to turn such in doesn't seem to get mentioned.  Which is part of what is driving his father crazy.  And, for this -- perhaps unique amongst all of the aspects of dealing with Ben -- I'm being allowed to play the good cop.  So ironic!

If it's not one thing ...

Coming back from radiation today (4 down, 21 to go), there was termination dust in the mountains.  That's what they call the first snow at the end of summer in Alaska (where Bill lived for 10 years).  Pretty much right on schedule, but with the flooding, I guess we've been distracted about the basics, like the seasons.  It did turn to fall a few days ago, after all.

And, we learned today that, notwithstanding Ben's having continually said he's fine and not worried, he's struggling again in school.  His assurances to the contrary, he hasn't turned in a single homework assignment for two weeks.  When asked about it this evening, he said he was "stressed out" because (a) it's High School which has been  a big change from the womb of Horizons (true), (b) because of the flood (he certainly didn't seem stressed during his 4 days off -- giddy rather -- and insistent the whole time he had no homework to do) and because of my arm (which he's said since the beginning he isn't worried about, because the doctors will "fix me").  Sigh.

Yesterday, also, I talked to my mom.  She's feeling much better now that her new (working) fridge has arrived, been installed, and is just there, back to normal.  Not only was it clear from her voice, but also because she offered to come to Colorado after I get home from the hospital to help out.  At this point, we're thinking that's probably not the smartest idea (never mind that her original reason for not coming to Houston -- snow that would disrupt travel -- would only be more likely in January in CO than December in Cleveland).

Plus, I know some of you think I'm crazy, but I was doing some more web surfing over the weekend about aspects of what I'm looking at in terms of the surgery.  At least one site I looked at said that folks who have whole skin grafts typically spent one to two weeks in the hospital.  Now that may be burn victims, because that's the vast majority of people who have such grafts.  And it's obviously not what they told me when they said 3-7 days, even though they said it was likely I would get a whole skin graft rather than the slice-off-the-top I had in August.  Maybe that becomes the difference between 3 and 7 days ...

3 down; 22 to go

OK, I'm not sure how interesting this is going to be, this counting down of the radiation treatments.

I had lunch w/ my friend Craig, who's both clerked for and argued in front of the Supreme Court.  He gave me a big pep talk.  All about staying on the sunny side of life, keeping my chin up and being positive.  All that placebo effect, mind-over-matter stuff.  Very sweet (and from his standpoint, thought out before hand, if not downright calculated).  It didn't stop me from getting nauseous in advance, during and after the treatment, but maybe a little less.  I also had a cup of calming tea (and crumpet) before I arrived at treatment this afternoon.

The ladies of radiation (the first day there were four of them, but these last two days, only 3) have been busy figuring and calculating.  Today, after the initial, long, painstaking set-up, they were able to come back in between zaps 4 and 5 and move the table, but not my body, so that the whole process took less time because they obviated the need for a 2nd set up.  Basically, the treatment disk starts under the table to my right, shooting up, and moves counterclockwise around me, with the 3 middle shots each above the table shooting down @ my arm from different angles, and then the final one, after the re-positioning (as I tried to explain yesterday), shooting up from underneath the table.

Meanwhile, I got a sweet note from my friend Laura in Montana.  Eve came by for Sol this afternoon, and we chatted.  Jack returned our shop vac, minus one important piece which makes our vacuum cleaner useless..  We got our FEMA reimbursement -- laughably small, although, as I said on my Facebook page, more than we got from our insurance company, which was zero.  I made a donation of a rounded up amount to our synagogue, which has a six figure damage bill (ours in low fives).  And while the moon is no longer full, it was very large, white and bright this evening when I walked Val.  Maybe sometime soon they'll open the open space trails, and the roads Bill rides on his bike, back up to casual traffic -- the flood damage continues to be stunning in its breadth, even as we're able to navigate around it for our everyday lives.

five in one

Everyone who is still up should go out side and howl at the full moon -- it's gorgeous.  Maybe more so this week in Boulder because we had rain for so long that we forgot what the night sky looked like!

Day 2 of radiation.  I paid a little more attention.  The arm with the rectangular screen is doing imaging -- taking the X-ray at the start to make sure my arm is in exactly the right place.  The arm with the circular screen is doing the beams for therapy.  The head on the arm has lead inside to constrain the beam so it shoots directly out; it's precise enough they don't believe a patient needs the additional protection of a lead apron.  It's also apparently a lower dose, even as compared to the X-rays at the dentist.  So, during treatment, the therapy arm rotates around and shoots its beams into my arm four times, each for about 30 seconds.  Then, the young women come back into the room and move me and the bench I'm lying on to the right so they can rotate the machine arm around under the bench, at which point it shoots the fifth and last beam for another 30 seconds across and under the bench to radiate the bottom of my arm.  Maybe I'll figure out how to draw a picture and post it on the blog this weekend.

My mom called while I was getting zapped, so we talked briefly when I got home.  She asked about side effects and I said none yet, other than nausea, which was from being anxious not the machine.  So the woman who takes 3 valium a day advised, "Call your doctor.  She can give you pills for that."  I love my mother very much and I appreciate she's trying to help. I'm just not sure it's my path.  Especially if I want to keep working.

Bill and I (Bill much more than me) also cut out drywall -- turns out the insulation behind it is SOAKED -- wring-it-out dripping wet.  Bill also ripped out the wood floor in the hall.  The flood aftermath just keeps getting better every day.  At least, though -- and I have said this also every day -- I thank our lucky stars (whatever they are) that we don't have sewage or even mud in our house like too many people do.  Just water and soggy insulation, dry wall and wood. 

This evening, Bill and Ben rode their bikes down to the Rio for Guys Night Out while Ladies Night went to Nomad Beads, made pretty things, ate appetizers and cake, and drank bubbly -- champagne and water -- to celebrate Pam's 50th.  I was exhausted by 9:30, had a necklace and earrings, so came home.  Again, I don't think I could be "fatigued" from the radiation yet; I think I'm just spending a lot of energy being anxious.  Maybe by Day 5 or so that'll abate -- not because I'm going to be happy about all this, but because it will just be routine.  Maybe. ;)

First Zap

Today's events:  My friends volunteered for Houston hospital duty. David from FEMA came as advertised (our payment should arrive in our account within 5 business days -- unbelievably efficient).   I talked to my sister-in-law about Ben coverage for the part of my hospital stay when Bill's with me.  I got a too sweet card from Ben's best friend's mom. 

And, I wore the jade and silver Chinese "Good Luck" earrings from Vicky to go get irradiated for the 1st time.  Four cheerful young women staff the radiation machine room.  Today was a double-time appointment.  The 1st 15 minutes they set me up, did an Xray to confirm the positioning (something I guess I get every day), moved the machine around in the pattern, and got confirmation from the Doc.  Then during the 2nd 15 minutes, they did it for real. 

I lie on my back with my arm in the mold they created last week.  They measured against pen marks on the mold to align my arm exactly the same way it had been in the mold initially.  There are two large mechanical arms, one with a circular face, the other a rectangle, that move around me.  There's also an array behind my head that may or may not be moving -- it's just out of my field of vision.  There's a lovely large back lit photo of a lake in the mountains (but they don't know what lake it is) that I see when the machine arms have swung to the sides.  The young women leave the room when the radiation actually happens, but come back in to take measurements in between beams.  However, I don't have a shield on my core.  The machines buzzed like Xray machines do. 

No pain, no immediate side effects.  Just the hard work of calming one's mind racing into panic mode: I'm being irradiated!  What does that make me -- a plant?  Haven't we been told all our lives to avoid radiation?  What am I doing here?  Isn't it dangerous?  Holli suggested meditating, or at least using some kind of calming mantra to focus on healing during the process.  I shut my eyes, mostly, and tried to focus on wellness and happy thoughts.

They gave me some lovely herbal salve to put on my arm -- starting now, even though it isn't burned yet.  They told me to avoid taking vitamin and herbal supplements that would give me large doses of vitamins A, C or E, or anti-oxidants, because the radiation creates free radicals, and the anti-oxidants "scavenge" those radicals, which compromises the treatment.  Massive doses of anti-oxidants (like fulvic acid), are of course exactly what homeopaths, nutritionists and alternative medicine practitioners prescribe for people receiving radiation therapy, because free radicals are bad for you.

I came home and suggested to Bill we go to Cozumel over Thanksgiving.

Later, it being the first night of Sukkot (the Jewish harvest holiday), Ben assembled a lulav (three sets of leaves -- myrtle, palm and willow -- that are fragrant and rustle nicely) and shook it and the etrog (a citron -- a very sweet smelling lemon-like fruit) to the four corners of the earth, the sky and the ground.  Let's hear it for the bounty of the earth.  And let's keep the farmers in mind, especially this harvest season when some of our local farmers all of a sudden don't have so much to show for their year, which was mostly very dry, but then turned to flood.  The other part of Sukkot is that we're supposed to eat and hang out and even sleep in an outdoor shelter.  That, we didn't do.  It was windy and threatening rain, again.  Fortunately for us, there's another seven nights of opportunity (at least to eat outside).

mom isn't coming -- FEMA is

When I told my mom that surgery had been rescheduled for December, she bailed.  She's worried about weather related hassels at the Cleveland airport.  (She can't worry about Houston -- they don't have snow).  I think, mostly, she's anxious about traveling at all.  And we know that she gets more anxious when her routine is upset.  I'll be fine w/o her -- I have several great friends who've offered to come to Houston, and my husband will come for a couple days.  But, it's sad.  Not only am I ill (even if there's no outward sign), but my mom is old.  When did that happen?

On the other hand, FEMA is coming tomorrow to 'cess out the damage in the basement.  Randy, the guy who's done every remodel for me since the late '80's when I lived on 5th Street, came by this am, and stayed for more than an hour (so I knew it was not good news).  He said we need to: (a) pull out more flooring that we had already done, (b) pull the drywall off our west wall, and (c) regrade next to the neighbor who sits 5 feet above us, and has no gutter on the side of her house that faces our.

dates redux

I heard from the cancer surgeon's physician's assistant today that they've rescheduled the surgery for December 11th.  As we expected, one or another of the two docs involved was unavailable for the two November Wednesdays (their surgery day of the week) in the Thanksgiving vicinity, and I asked not to do it on the 4th because of my bi-monthly state water committee meeting that day. So it's the 11th, which is seven weeks from the end of radiation, well within the 4 to 8 week recommended time for post-radiation surgery.  At least now I (and my team) can begin to work on logistics.

Meanwhile as those of you who read Sunday's post know, I've become quite anxious about what it means when they say I will have a 'permanent loss of function' after all this treatment.  Biking?  Skiing?  Helping move furniture or lift things?

The PA tried to be reassuring that the safe margins in my case shouldn't involve losing much muscle, although she also talked about the potential for "fibrosis or soft tissue scarring that can lead to a loss of motion" as one of the side effects of the radiation.  (In addition to radiation making one's bones brittle down the road.)  And, of course, while the tumor was not in the muscle at all, it sat right on top of my muscle, so getting a safe margin will require removing at least some muscle tissue. 

It's all a little confusing.  The literature on arm salvage surgeries is not extensive, but the most cited study says that, while no patients say their condition is poor post surgery, less than half say it's excellent.  (The other choices were good or fair.) I've got to learn more, obviously.  and practice positive thinking!

Radiation starts tomorrow.

some days are not so great

Flood, Day 4 turned into a stomach-churning day.

On Day 1 (Thursday), we woke up to discover that 2 of the rooms on our lower level had had water bubbled up during the night.  All of the edges of the wood were wet.  We put fans in those rooms, and by the end of the day (Thursday), they were dry.  We spent the day doing other things -- including helping all the neighbors with sopping carpet in their basements.  We woke on Day 2 to the realization that, while the floors may have been dry on top, they were still wet underneath, because they had buckled and  become wavy.  So we put Ben and his friend Sawyer on ripping them up (teens do love destruction).  They got the guest bedroom mostly done.  Yesterday, Day 3, it didn't rain much.  Not much got done on the house, either, in part because it was Yom Kippur, the highest of the Jewish High Holidays.  Also, because there were other chores.  After morning services Ben helped his Dad move the big new mill Bill got earlier in the week down into the basement (all 800 pounds of it).  Today is Day 4.  There are lots of people in worse shape than us.  Lots of roads out.  Our friends in the mountains getting drops w/ MREs (Meals Ready to Eat like soldiers).  1200 people getting helicoptered out of their homes.  Lots and lots and lots of damaged basements -- some with water, and some, like the Conservative Synagogue in town, with sewage.  UGH.

We gave Ben the day off, but Bill and I deconstructed all the equipment in the gym room, the 2nd basement room with a wavy floor.  Our gym equipment is heavy and cumbersome (and that's taking the 220 pound weight stack apart 30 pounds at a time).  And then there's ripping out the floor, which doesn't take quite as much muscle (and still isn't done), but is still an athletic activity.

About 1/2 way through the afternoon, I burst into tears.  If this flood -- or any damage -- had happened three months from now, I wouldn't have been able to help.  And, it isn't clear if it happened a year from now how much help I will be able to be.  The whole concept of "permanent loss of function" hit.  I may not be the strongest bear, and in Boulder, I'm certainly not the most fit, or most athletic 50-something year old. But I'm in pretty good shape.  And I can help move heavy, cumbersome furniture.  And lift heavy stuff over my head. 

What's so hard about what's going to happen in 9 weeks, is that, even though I have cancer , I feel fine.  What all this "treatment" is going to do is render me permanently not fine.  I will have some level (10%, 20%, maybe 30%) of permanent loss of function.  Why?  To avoid the 50% chance of recurrence of the cancer that would, if it happened, most likely result in amputation (100% loss of function).  But the ugly reality is that accepting "treatment" means accepting permanent damage now and forever (that's what permanent means) rather than risk potential future greater damage.  Given that right now, even though I have cancer I have complete function, that's a really bitter pill to swallow.

Flooding knocks the story sideways

The phone rang @ 6 am w/ a robo-call saying school was cancelled today.  No real surprise to Bill, who'd been on the roof trying to clear downspouts @ 2 am.  Or to any of us.  The rain was so hard and loud last night, it was deafening.  Half of the new basement floor flooded -- the water bubbled up from underneath.  While I was at the radiation treatment center, Bill was talking to our insurance agent.  He laughed.  No one is Boulder has flood insurance.  After all, we live in the semi-arid west.  Hail?  Sure.  Snow - you betcha.  Wind -- but of course.  But rain?  The 100 year flood?  When Boulder's record total September precipitation is 5.5 inches and we got 8.5 in a 24 hour period?!  At least we're not as bad off as the folks who don't live on a hill.  Or as our neighbors across the street.  Ben spent 1/2 the day helping them extract soggy wet carpet.  Bill helped with the shop vac.  Ugh.

But, at 8 am, sharp, this morning, your faithful scribe was at the Boulder Radiation Therapy Center.  Along with the techs (one came from east county over the bridge at Dillon & 287 a half hour before it collapsed), and eventually the doc.  Now, it took an hour to the CT scan, not 10 minute.  Part of the problem was that all of these fancy machines had to re-boot, after they lost electricty.  Mike (the lead tech) never did get the laser going.  But, we changed the orientation of my arm to flat so that they can skim the side and not hit bone.  Yea!

Re-Positioning

Yesterday, two votes in the State of Colorado recalled two of our State Senators (for voting in favor of gun legislation).  First time in the State's 100+ year history. 

Yesterday, as those of you who read this blog know, I spent an hour getting a CT scan to prepare my arm for radiation therapy.  Today I got recalled.  Apparently, the radiation oncologist (MD) was not satisfied with the position of my arm on the CT scan.

So, tomorrow am, I have to go for a do-over. Notwithstanding that the doc had the techs redo my position yesterday (after they had already had to redo it themselves because on my way into the CT scan -- which is like a tunnel -- the edge of the special pillow that is inflated/deflated to hold my arm in position, caught on the machine and moved).  So it's a do-over of a do-over. 

As Bill said, they are sweating the details, and we should be glad.  Hooray.

I was at a state commission meeting this am -- my voice only caught once when I had to talk about my arm.  And, another colleague commented on the phone this afternoon that I sounded better than I did two weeks ago.  Nice to know.  The conversation with Cyd (personal trainer who's getting me strong for surgery) yesterday, when she talked about the last post-radiation client she had who ran into a wall playing squash and shattered the bone in her shoulder that had been irradiated was jarring, but I'm learning how to be cheery. 

Lots of people get through radiation and don't break bones afterwards.  5 out of 6 people w/ soft tissue sarcoma of the extremity don't end up with amputation.  Learning to focus on the positive is like seeing the forest not the trees.  Or like seeing the spaces between the trees, not the trees when you're mountain biking or glade skiing.  Avoiding a crash is a lot about where you don't look.

Tatoos!

So today was a good day, something I define now as "made progress." 

I spent the morning at Boulder's Radiation Treatment Center.  Even though they hadn't received the records from MD Anderson, the doc was able to email with the MD Anderson radiation oncologist I saw last week and come up with an agreed-upon procedure to treat my cancer.  It's a wider margin than he would have taken, but he will try to avoid zapping my bones, in an effort to minimize the brittleness that affects bones subject to radiation -- something he at least acknowledged, that Guadagnolo (last week at MD Anderson) didn't.  He made more sense than she did, too, even though he has his own quirks.  (Was it really necessary to tell us that he got the top grade at his med school?)  What he described was a procedure that will curve around my bones -- so not a straight line.  Although, he did also say that the "line" for the treatment is not so precise that there wouldn't be bleeding across it (i.e., it's not 100% dose on one side of the line and zero on the other).

I was there for a while.  They drew blood and set me up for an IV so I could have "contrast" for a CT scan.  I spent a 1/2 hour going in and out of the CT scan machine before they actually did the scan.  First, they set up the inflatable pillow around my arm to keep it stable -- and moved me into the machine only to have the pillow catch an edge and move out of position.  Then, they repositioned, and sent me in, only to have the doc say he couldn't see enough of my arm.  So, they repositioned again, and finally they were able to get a good scan. 

After that, I got my tattoo's -- five little dots they put around the treatment area that will allow them to position my arm in the same place for every one of the 25 sessions.  "real tattoos" with dye and a needle, although maybe they'll fade -- and at least one of them will probably get taken out during the next surgery.

Then the head tech and I spent 20 minutes scheduling.  The best we could score was a mid-afternoon slot during September (3 pm).  I'll get a preferable morning slot (8:45) for October.  not the coveted first or last slots of the day, but OK.  I already knew I wouldn't be able to go to the Colorado River Biennial in Santa Fe next week, and that the CWCB meeting in Telluride the following week was unlikely.  Now there's two meetings I'll have to leave early or arrive late.  And a day-long work shop in Colorado Springs (2 hour drive) that won't make sense for me to attend.  Collectively, that means most of the work meetings now scheduled during the 5 weeks of treatment will be affected, but we knew that was likely.  Gotta keep trying to maintain my day job!

Meanwhile, though, I had a sobering experience this afternoon.  One of my work colleagues (another woman of water) has had her own misdiagnosis experience this last month.  But for her it's been her kid (who's Ben's age) having been misdiagnosed with Lyme disease for six weeks, as a result of which she may have meningitis.  Puts everything in perspective.

Show time (maybe)

Here's a switch -- I got a call today from the radiation treatment center saying they wanted to move UP my appointment to tomorrow (from Thursday) -- and do the positioning work immediately following.  So I spent an hour faxing HIPPA requests and talking to folks at several hospitals to try and ensure that they would have my medical records.  We will still need to ask the questions (do you have the right machine; have you treated soft-tissue sarcomas before), but this would mean treatment could start next Monday. 

All good, I guess, but also makes the whole process real.  Really happening.  Really sick.

when you don't want to be a trailblazer

I talked to Deb today, our nuclear physicist friend who runs radiation therapy machines in Atlanta.  She gave me some suggestions for what questions I should ask when I have my 1st appointment at the radiation treatment center here in Boulder later this week, and also told me a little more about the process.  If I decide to go the center here, after the initial visit, I would need a set up appointment, where they'll do a CT scan of my arm, in the position that it will be for treatment, and then they'll also work on positioning my arm so that it can be held in exactly the same place without moving during each treatment, preferably out away from my core and head.  So radiation might not start in a week, because this is another step in the process.  She also said that, given the treatment is on my arm, I might not experience fatigue, and that the sunburn effect might not show up until after the treatment is over -- because some of the effects of the treatment don't manifest immediately.  This conversation was pragmatic and therefore comforting.  The key will be whether (a) I feel comfortable w/ the Dr., (b) they have the best machine for the treatment (tool for the job) in Boulder, because if not, I would need to go to one of their other branches, and (c) they've done sarcoma treatment before, because it's one thing not to be a specialty center, and it's something else again to be a first. Or second.  Deb says they treat sarcoma pretty regularly at her centers in Atlanta, so I'm hopeful that even though it's an unusual cancer, they (the 3 radiation oncologists) will have had experience with soft tissue sarcoma here.  Patience.

Miscommunication & Confidence in Competence

My MD Anderson experience today was … frustrating. 

The day started fine.  Ann left me a freshly baked almond croissant and small pot of coffee with the local Houston paper in her bright dining room.  I didn’t make any wrong turns on the way to the hospital or parking garage, and I found a space on the bridge level and arrived at the Sarcoma center right on time. The board in reception said that radiation oncology was also on time.  Whiz.click.bang.

Sadly I didn’t have an appointment on the books.  Apparently, when the scheduler cancelled all of the appointments related to the now-delayed surgery, she cancelled this radiation oncology appointment too.  However, they decided they could still see me, albeit not by the head of the department, but by the more junior doc.  Still, better than to find out that I’d flown to Houston for no reason, right?

Sort of.  I saw the Doc for maybe 15 minutes, with the upshot being … I’d flown to Houston for no reason.  It turns out they don’t give a patient protocols to take home.  If I had wanted to do the treatment there, they would have set it up, but if I want to do the treatment elsewhere, I just set up an appointment with a radiation oncologist where I want to go.  That person then gets my records from MD Anderson.  If I’m comfortable w/ that person, I go ahead with the radiation.  If I’m not, I can always have the treatment done at MD Anderson.  No, they don’t have recommendations or know anyone anywhere in Colorado.  And this has always been their process.  How I could have gotten a different impression was a result of my having misunderstood.  The fact that the surgical oncologist said I should see the MD Anderson radiation oncologists but could get treatment in Colorado, and that his Physician’s Assistant was the one who scheduled my appointment in Houston, is apparently all the result of MY misunderstanding.

At least she was kind enough to answer some questions. 

• The reason to have radiation with my kind of sarcoma is that it reduces the risk of localized recurrence by 50%.
• The reason to have radiation before rather than after surgery is that post-surgery radiation requires a higher dose.  And post-surgery radiation is more likely to result in mid and long term complications not related to the cancer itself, including an increased loss of function.
• There is in fact a higher incidence of Major Wound Complications with pre-surgery radiation, but they think it’s worth that risk, because the MWCs are short term and can  be treated.  The only thing they do to minimize the risk is what they try to do all the time – minimize the risk of infection and watch the healing process.
• The radiation will be a five week course, five days a week. 
• “traditional” external beam radiation therapy machine, rather than a gamma knife, b/c the latter is only for small, targeted masses.
• She usually does a 7 cm (3 inch) margin around the site for this type of cancer, so all the way through my arm, up around my elbow, almost down to my wrist.  That's because it's a sneaky kind that sends out small tentacles which don't show up on an MRI, the best tool they have to see inside my arm without cutting me open.
• The radiation is indiscriminate, in that it damages all the cells it touches, healthy and cancer.  The difference is that the healthy cells recover, whereas the same genetic defect that caused the cancer cells to become cancerous stops them from recovering.
• The radiation damage will look and feel like a sunburn.  That’s the indication that the cells are damaged. 
• Surgery would then occur 4 to 8 weeks after the therapy is done, which is the time necessary for the healthy cells to recover.
• Other than the sunburn, and fatigue, there should be no side effects.
• There is no way to measure the success of the treatment other than by checking years later to see if the cancer comes back (and of course, it might not have come back anyway, or it might not have come back because the surgery was successful).
• She didn’t know why they didn’t recommend radiation last week when I was there, since she described this treatment approach (radiation before surgery) as standard practice.
• The fact that the MD Anderson pathologists read my slides differently than Dr Chris Fletcher @ Harvard is no surprise.  According to her, there is only a 60% likelihood that two pathologists will agree on a specific typing of a soft tissue sarcoma.  The MD Anderson diagnosis is not that different from Harvard’s, except that their type is “more malignant.”  This does not change its grade, which is still ‘low’ because the likelihood of metastasis, i.e., the risk of recurrence somewhere else in my body, as opposed to the risk of local recurrence, is small.  What it does mean is that the MD Anderson pathologists think the type they assigned, as opposed to the type Fletcher assigned, is even more likely to spread locally with the spindly offshoots.
• While there is evidence that getting treated at a sarcoma center improves overall survival rates, the evidence that supports that result is the differences in surgical outcomes.  There is no data one way or the other that it matters whether radiation is done at such a center.
• I should have the treatment anywhere I feel comfortable doing so -- my call.

One can’t fault MD Anderson’s patient orientation for this fiasco, however.  I’d barely left the building before my ‘patient advocate’ had called to say she’d heard I’d have a not-so-great experience with the radiation oncologist and was there anything she could do to help.  Except no she wasn’t in a position to refund the $600 I spent flying here and renting a car.  (Actually that’s unfair; I didn’t ask.)

At least the Southwest folks let me on the earlier plane so that I didn’t have to spend 2.5 hours waiting at the Houston airport.  For free (after they quoted Bill a $90 change fee).  It probably helped that I’d forgotten to take off my hospital bracelet.  I even had time to grab lunch, call and report out to mom, and make the appointment at the Boulder Radiation Therapy Center (Thursday next week, so they have time to get the records from MD Anderson) before my flight boarded.

This weekend, I’ll be ready to call Debbie, our nuclear physicist friend who runs these machines in Atlanta, to find out what I should be looking for, in terms of competence, when I talk to the doc at the Boulder Center.  Just another week of waiting.  At least Annie, Kevin, Michael & Joanna are coming to dinner tomorrow night -- we know they'll not only be distracting, but bring liquid distractions (although mostly we're doing this because Bill wants to make margs).

The Book of Life

Between me and Bill, I’ve got more than a page in 11 point font of questions for the radiation specialist tomorrow.  Everything from how it works (after all, my husband is an engineer), how we will know if it works, what the goals are, logistics (how long would the wait be between finishing radiation and surgery), how to be strong during the treatment (diet, exercise, etc. – I certainly have friends who will help with this, but I’m curious what he says, too) and many others.  I assume that one of the plusses of flying to MD Anderson is that I will have the time I need to understand and feel comfortable about this next step.  I also hope he’ll be OK having Bill on the phone listening, because Bill would like to do that.

Holli said treatment doesn’t hurt, which is consistent with what I’ve read and others’ reports, but she also confirmed the psychological impact.  She suggested doing something akin to meditation during the treatments themselves.  Sounds right to me.

 
I’m writing this from the plane (love that SW wi-fi) to Houston.  I spent the morning with Ben (and hundreds of other folks, including many friends) at High Holiday Services.  He wore the suit from Diana and Ezra’s wedding – so handsome.  But also, Hooray, at least he’ll get two wearings (well, maybe Yom Kippur -- that's only 10 days more).  The way he’s growing, this could be it.  All of his friends we saw at synagogue are in the same spurt. 
 
May everyone who’s reading this be inscribed in the book of life for the New Year, with health and happiness.  Me included.  Amen.

Houston, again

I'm headed to Houston tomorrow.  I have an appointment with the radiation oncologist Friday morning.  The plan is that I will be able to fly home that afternoon, meet with a radiation oncologist in Boulder early next week and start treatments here then.

First, I have to admit that my psychological response to adding radiation treatment to the plan has thrown me for a bit of a loop.  Funny how something surprises you.  Somehow, surgery, especially on an "extremity" like my arm, seems totally typical, especially in our family, where my beloved husband is a walking orthopedic adventure and my son broke his foot in June.  Surgery, therefore, for anything, even cancer, is ... normal.  Radiation, on the other hand, is not.  It's abnormal.  It's dangerous, even as it buys people time.  It bought my dad another almost two years of life, most of which were high quality, and it didn't hurt or make him sick.  Lots of people with cancer embrace radiation therapy:  it doesn't make you sick like chemo, it can kill the bad cells; and it extends life.

But, still, it's a treatment for CANCER, which is what I have, a sickness, in a different category from bone breaks and ligament or tendon tears.  These latter can be crippling, but cancer is life threatening.  As a result one can need radiation, which kills perfectly healthy cells along with the malevolent malignant ones; we do radiation to eliminate cancer from the body, because otherwise, the cancer can come back and kill you.  At any rate, the radiation treatment recommendation is making me confront the mortality aspect of this disease in a way I was conveniently ignoring so long as the next step was "only" surgery.

None of which, I concede, changes the fact that this cancer is still one they are classifying as low grade.  And, that is still excellent news.  None-the-less, one of the many questions I'll have Friday is why, if it's just a different kind of low-grade sarcoma, is radiation now warranted?  That's along with the other questions, gleaned from reading and trying to figure out what's different.  These include:

• Pre-surgery radiation increases post-surgery loss of function in the extremity, as well as post-operative wound complications.  The good news is that several of the articles describing these consequences were written by the radiology oncologist I'm going to be seeing Friday morning.  Still, what's the strategy to deal with these significant, adverse side effects?
• What are the logistics?  How long do I have to recover after radiation before surgery?  [The literature says at least 4-8 weeks.  Sadly, this makes my call not to buy a ski pass last weekend look correct.  Which I hate!]  What are they recommending about diet, exercise and other non-Western medicine treatments and preparations, because I know in my heart that this is important.  Plus, doing these kind of things, over which I have control, will be good for my psyche when I'm accepting treatment over which I have no control.  Except, as noted earlier in this blog, that whole part about no sugar ...

Also, as noted in a previous post, the radiation treatment will have me pinned, i.e., no travel during those weeks because I need to be at the treatment center at the same time every weekday.  Bill is already Jonesing for adjustments to the schedule.  I'm less sanguine that these may be part of the program.  Regardless, I cancelled my reservation for Santa Fe in two weeks to go to the Colorado River Symposium.  Let the dislocation begin.  Obviously, I will get at least some responses to questions Friday.  Bill is wondering if dealing with uncertainty can change a Meyer-Briggs J like me into a P.  I doubt it, and I'm not even sure I want that.  But, all this uncertainty is pretty hard for me!

Meanwhile, once again, I need to thank my awesome friends.  Lee Harris Potter Rogers (ne and now of North Carolina, for four shining years at Dartmouth) grew up next to a woman who now lives 10 blocks from the Houston hospital zone.  Because Lee is my friend and reached out to her, she is putting me up tomorrow night, sight unseen, character untested. !!! I owe you all more gratitude than I know how to express.

And, as I said on my FB page earlier today, for those of you who are MOT, L'Shana Tovah -- Happy New Year.  May we -- my family, friends and colleagues, MOT and non -- all be inscribed in the book of life for another year of happiness, health and the chance to repair the world.  Lord knows, if I get the chance, I promise to do twice my share of the latter going forward.

Best laid plans ...

Just got off the phone with the surgical oncologist.  He called because they had their conference today about my case.  They had additional information from their own pathologist, who got my slides from Chris Fletcher, the Harvard pathologist who provided CU Denver with a read of the tumor extracted August 1st.

The MD Anderson pathologists have refined Dr. Fletcher's conclusion (that it was a "hybrid" of a couple different unusual tumor types) and decided that it's still a weirdo sarcoma, but one they would call "unclassified pleomorphic."  These cancers tend to spread locally.  And they tend to spread with tiny tentacles in a diffuse pattern (Fletcher used the word "spindly.")  Because the initial surgery didn't get it all, and finding it all is a challenge given the way it grows, MD Anderson's team is recommending that I have a month of radiation therapy before the 2nd surgery. 

What that means is that the 9/25 surgery date is OBE, as we used to say on the Hill (overtaken by events).  Instead, I will go to Houston sometime in the next week to meet with the radiation specialist who will give me a protocol that I can have executed here in Colorado (and, I hope, Boulder).  It does mean I will be pinned (no travel) for those 30 days, because you have to have the treatment at the same time every day.  This is the treatment where they give you a tattoo so they can zap the same location every time, for maybe 15-20 minutes a day. I have yet to triangulate with my friends and family who know more about it, but it's not supposed to be bad like chemo in terms of awful adverse side effects.  Still, ironic given the 12 years I spent trying to make sure that people who lived near nuclear weapons sites and power plants were not exposed!

The bottom line is that I thought this blog would be quiet for three weeks while we waited for the surgery, but there always seems to be new news.  Oy!  So glad I got to go to a beautiful wedding this weekend and be in a beautiful place with my extended family and have that distraction for a couple days.