VAC on

The home health care nurse came this afternoon and installed the VAC on my arm. She cut a piece of black sponge and fitted it to the wound and taped it on with sticky tape to create a seal.  Then, she cut a little hole and stuck the end of a 5 foot tube in the sponge.  The tube fits into a little pump, with a reservoir attachment.  When she turned on the pump, it started sucking, and the sponge flattened.  totally bizarre.  Ben, having said yesterday he wanted to see the wound, demurred today, and I honestly see why.  It looks like this:

The pump/reservoir fits in a pouch. It weighs maybe 3 pounds.  They make it wearable, as a shoulder bag or fanny pack, which looks like this:

I'm supposed to wear it 24/7, and the doc said a couple weeks.  It promotes healing.  When my tissue is healed enough, then I can get the skin graft surgery.

So, a 24/7 tether for 3 weeks that I need to remember not to catch on anything.  It makes a bubbling sound, like water boiling.  It smells like plastic.  I burst into tears when the nurse left.

She kindly offered that I can put it on the floor next to the bed when I sleep, and plug it in overnight so that it recharges.  Obviously, I will need to rethink the whole rolling over in bed activity to avoid a headline:  Boulder woman strangles in healing machine. 

I'm having a hard time thinking about how this will work professionally.  Notwithstanding the 'keep it on always' admonition, I can unplug it to remove sleeves, or take a shower.  It's cumbersome enough, though, I may stop wearing my Fitbit for a couple weeks.  And, the cast they sent me home with from Houston will need a re-fit tomorrow when I see the OT (I hope, because it's unwearable now).

not much happening, by comparison

Having a quiet week can be ok.  After the hospital, I tried to have a normal day Tuesday.  Even got some work done, although I also went to OT, which just hurts, as gentle as she tries to be. 

Wednesday, Bill and Ben went skiing, even though Bill's got some flu-like illness; I went to see Inside Llewyn Davis.  We went to the Wranghams (minus Scott) for dinner, which was a meal and evening filled with warmth, close easy feelings, and -- of course -- good food.  And Theresa's the only Boulder County hostess I know who not only actually uses chargers, but has several different sets. 

Thursday, I had lots of appointments starting again with the OT.  Then, the infectious disease doc, who said the infection was not enough better to start the vac (which arrived in the mail), and who's concerned that all these antibiotics may not be curing the whole problem, even as they have addressed the most acute symptoms. Last was getting my mom from the airport. 

Today, we did some errands, I got a tiny bit of work done, but it seems there's always just lots of stuff to do.  Mom cleaned out the fridge -- love her!  Vicky Mandel swooped in for one of her surprise visits; it was so warm we sat on the deck outside, wearing sunhats. After dinner, Bill helped me change the dressing on the wound -- definitely still angry red and a bit swollen, while Mom watched (she wanted to see the damage).  Ben was an especially good kid today -- helping (lamely -- we were both laughing pretty hard eventually) make biscuits for his breakfast, cleaning up, helping his dad clean up after dinner, sitting and having a nice long talk with his grandmother, watching a movie with his still-sick dad.

I also got two good reminders that mine is not the only drama. A friend's dad died. She had to deal not only with her own sense of loss, but her mom, who has Alzheimer's -- like what Bill did last year with his uncle after his aunt died. Then one of Ben's good friend's dad's partner told us her tale of at last getting close to a diagnosis for a condition that has taken her from little to tiny this fall -- she may no longer be absorbing vitamin B12.  Fortunately if that is the diagnosis, there's a work around, which makes getting to a diagnosis at last a relief. 

I know that more hard things happen as we get older, but it all seems like a lot.  And I feel badly that I'm so unable to be there for anyone else. 

Home again

After a very anxious morning, I came home from the hospital early this afternoon.  Exhausted.  I slept for several hours.  So did both Bill, who has a fever over 100, and Ben, who after exam week and a busy weekend thought he deserved a day in bed.  Are we the walking wounded or what?

The morning was bad because it wasn't until after 1 pm that either the infectious disease Doc here or I was able to reach the MD Anderson plastic surgeon, or anyone there, who knew anything about my case.  the fortress there is really crazy.  When Scott Oates finally called (after I impersonated a doctor to sneak through to talk to the live triage nurse), of course, he was not at all apologetic.  he thinks their system is great and makes complete sense, of course.  More importantly, however, he was not especially worried.

While just not being able to get through was distressing, I also got spun up because no one here really knew what to make of my symptoms, nor knew anything about the temporary graft (Primatrix) and what the symptoms meant for it.  I was admitted for infection, but never had a fever, and the massive blood draw they did Friday night didn't show an elevated white blood cell count.  So the indicia for infection were that my arm was red and very swollen, plus the wound was leaking, where it hadn't been before.  This morning, after 2 and a half days of shock and awe antibiotics, the swelling was down.  And the wound was no longer discharging anything.  But it was just as red, plus hard and a bit swollen right around the wound site.

(If you think I'm exaggerating about being swollen, there was a pretty funny moment when the hospitalist came in on Saturday.  We were talking, and she looked at my puffy hand and said, "I wonder if you have a pulse.  I better check."  Funny because we were talking.  Her concern apparently was that my hand was so swollen it could have closed off the blood flow.)

As a result, the infectious disease doc, who has no experience with Primatrix, was concerned that what was going on was that my body was rejecting the graft, or that there were unacceptable amounts of infection beneath the graft, either of which could require surgery.  Instead, Scott Oates says that these bovine collagen grafts don't have cells, so can't be rejected.  Apparently, they can fall off, too, if there's so much infection under them, but they aren't alive and can't be infected themselves.  And, he's relatively sanguine, given that the wound is no longer oozing, that the reason for the redness is the irradiated tissue not liking the hole in my arm or the graft -- i.e., having been bothered.  Thus, his take is that I will go forward with the vac machine as soon as it can be ordered, and set up, and that I'm probably now looking at surgery more around mid-January, but even that is dependent on how the next couple weeks of healing go.

in the hospital

Friday started as a perfectly fine day -- altho I went back to sleep for two hours after Ben left for school.  I got some work done and did a number of errands, including returning dishes to two of the wonderful women who have been bringing us dinners.

Before dinner, though, I couldn't ignore that my arm felt hot and uncomfortable. So Bill helped me unwrap it and sure enough, it was swollen and red.  Because it was Friday night, we knew there would be a long wait at ER, so we decided to eat before going to the hospital on Broadway. So we did.

While my pain level wasn't that much when I arrived, three hours later when I was finally seen, I was curled up in fetal position rocking myself.  The ER doc didn't even unwrap the wound the whole way before he said he would be admitting me.  They gave me -- at last -- some pain meds but didn't start the antibiotics because the ambulance can't do the hospital's drip.  I needed an ambulance because the Broadway hospital didn't have beds so they needed to transfer me to the Foothills campus.

Even the ambulance ride was notable.  The driver stopped at a light and watched a car hit a pedestrian.  Being EMTs, they had to stop & assist.  Then, when the 2nd ambulance arrived, the driver was so rattled, he missed the turn for the hospital and all of a sudden, there I am giving directions from the back gurney (yes, University will take you back to Arapahoe).

The rest of Saturday morning was pretty ugly.  The first rule of pain management is don't get behind the curve.  Sadly, we had.  I think I finally slept between 6-8am.  Consequently, yesterday I was pretty pathetic. 

The infectious disease Doc is making the calls on my care.  I'm getting 5 infusions of antibiotics daily (2 different kinds).  His goal is to see enough improvement that I could go home tomorrow with oral antibiotics, rather than having to do infusions at home (ugh, we did that after Bill's 2nd knee operation and it's doable but a pain).  There was enough improvement today, though, that I think I will be able to avoid the worst case scenario he floated yesterday, which was surgery to remove the infection.  That's what my mom had to have after the back surgery that almost killed her a decade ago.

None of this should be a surprise, really.  All of the articles I read and the docs I talked to agree that wound complications are a greater risk for patients who have radiation therapy before surgery.  They still do the radiation then because it allows them to give a smaller dose than if it's done after, which means less damage to bones and other tissue, and because the results in terms of cancer are better.  They are willing to increase the likelihood of a bump in the road in terms of shorter term recovery, for the higher likelihood of getting the cancer and less long term damage.  Still, this sucks.

safe margins

got the call today that I've been waiting for since August 15th -- 4 long months.  The final pathology from surgery on December 6th confirmed they got "negative margins."  That means that they took healthy tissue beyond the cancerous tissue in all aspects and places.  As Angela, the cancer surgeon's PA, said, they had to take a lot more tissue (not just the ECRL muscle, but fat and lymphatic tissue and veins and tendons) than they'd expected.  It was indeed like a spider plant.  Undifferentiated.  No hard outer covering. No obvious edges.  They had a 9-point grid and they went deeper and further afield than the radiation treatment's 'wide' field.  But they got it.  Hooray. 

Next steps to talk to Scott Oates' team about scheduling the graft.  And asking lots of questions about what's happening in my arm.  E.g., is the fact that my middle finger is drooping and can't hold its own evidence of temporary or permanent tendon damage?  But at last having solid good news is nice.  I cried.  (Ben had to ask his father why, but that's ok).

Meanwhile, the OT worked on scar tissue and swelling today.  Super painful, but I get it has to be done.

overdoing it

I had a bad night last night.  Ended up taking a tramadol @ 2 am, and not getting much sleep even after.  Bill changed the dressing before we went to bed because the wrinkles in all the layers of gauze and bandages are irritating.  I feel like the princess and the pea. After the dressing change, it definitely felt better, but not enough. 

Mostly, I think I overdid it yesterday.  In the a.m., after Carol Gibson came over to take Val for a walk (and brought chocolate bars and flowers!), Bill and I drove out to the car parts store to get a steering wheel handle (also called a suicide knob), which allows one-handed driving.  They are apparently illegal in some states, but I figure not here in Colorado.  A. They sell them @ NAPA auto parts.  B. We don't even have a helmet law in CO.  That then liberated me (and freed Bill some too).  So I went off to do a bunch of errands.

I braved a sale day at Macy's to get Ben slippers, and me PJs.  My 1st priority had been to get Ben jeans, because once again his are too short.  Sadly, after patiently waiting for several complicated transactions that took a 1/2 hour, the saleswoman confirmed that Levi's doesn't make the size he needs:  28x34.  In this world where the size of humans seems to be getting larger and larger, my son is getting taller and skinnier on a weekly basis.  We understand that he will eventually fill in (although those guys who played the Somali pirates in Captain Phillips didn't), but that doesn't change the fact that it is winter and he needs long pants. Now.  Even he wants a couple pair, although he'd always rather be wearing shorts.  Any of you readers who have ideas about brands that might work, please let me know!

I also went to Target for a variety of pedantic things, and a Christmas Tree Skirt.  Why, you might ask would a nice Jewish mid-50's person who had to look up what they were on the web buy such a thing?  Because I was invited to our artsy, hip fun neighbor's holiday party for her girlfriends where the one requirement is that guests wear an Xmas Tree Skirt.  And who wants to be a party pooper w/ that kind of theme?

Then there was the climbing gym, where Ben was at a comp, so I watched him working on a hard problem.  And the drug store for more dressing change materials - and a reuseable sleeve to use to take showers.  (I used it later -- it's practically a tourniquet at the top, which is super uncomfortable, but it's easier than the garbage bag wrap for Bill.  Although it's definitely not the one-handed use the package promised.)  & the coffee store to refill Ben's growler of Chai.  I started giving him chai in the am when he made clear that he didn't want to take medications to help with focus, but that caffeine seemed to accomplish the same result, albeit for not quite as many hours.  He's busy studying for his 1st set of high school finals this weekend, and he's already has 3 mugs today.

But after taking Ben home I went back out to the consignment store and riffled all the shirt racks to find some wide sleeves.  Tried on a bunch; bought several.  I sort of knew when I got home that that had been a bit ambitious, but I also had really wanted to get this task off the list.  Now I have enough tops to get me through these next 8 weeks. 

We had a party to go to (one of the few we get invited to, so good to go), so instead of a nap, I took a shower (yeah!), and we not only went out but went to Zolo's after, because really wants to have a "real dinner" as opposed to appetizers and dessert.  He's just not much of a grazer.

loss & compensation

Yesterday when the OT was excited about watching me do my little exercises w/ the wound uncovered, I was puzzled about why the muscles you could see under the graft were straining so much, but I still couldn't lift my wrist.  Of course this is what the OT is all about.  I can't lift my wrist b/c the ECRL, the muscle that did that job is gone.  Sitting on the table in a pathology lab in Houston. Meanwhile, the other muscles are straining, to no avail, because they haven't yet learned how to do the work of lifting my wrist.  But, through OT, they can, and will, as long as I'm diligent.  Which I must be.

insurance looking glass

Health insurance is definitely a bizarre construct.  My plan covers (more expensive) in-home Occupational Therapy, but not the outpatient OT my doctor prescribed.  However, my plan covers outpatient Physical Therapy -- even without a prescription.  After many phone calls with various OT/PT providers and the insurance company, I was able to set up occupational therapy with a certified hand/wrist/arm specialist (overseen by the owner of the facility who's a PT) twice a week where they can also do the dressing changes that the doc wanted done at home.  It's just that nothing is easy.

Someone asked about whether I would need another surgery for reconstruction.  The short answer is no.  Because the numerous small clusters of cancer cells that survived radiation therapy that the oncologic orthopedist found and removed were all along the length and depth of a single muscle (the ECRL) they removed that whole muscle, but only it.  Being down one muscle, and this one in particular, means that OT will help me recover and learn how to compensate, without additional reconstruction. One example of compensating will be that I get a new cutting board which has spikes on it to hold vegetables or meat in place so that I can chop mostly one handed (altho maybe my left). Had he found pockets of disease in several different muscles, the outcome might have been different.  So that's one way I am lucky.

The other aspect of what's happening that I need to explain better is why the healing process is so much less certain this time around.  It has to do with the radiation therapy.  My tissue is now damaged, so it will take longer to heal, or might not heal as well.  Ordinarily, someone who has a temporary graft is ready for real skin in three weeks.  With me, it might be as long as six.  And when the graft is placed, it may not take smoothly at first or long-term.  They know that wound complication risks are greater for folks who get radiation therapy, but they still think it makes sense to do the radiation before surgery because it means a lower dose and fewer cancer cells. o, it's a balance. And how my body heals will also be a factor in how all of this plays out over the next few months, because that is highly individualized. 

home

I was able to fly home last night.  Here's a photo of what my arm looked like yesterday morning during the dressing change:

and here's the fiberglass splint that an Occupational Therapist spent 2 hours creating for me yesterday afternoon:

Today's job is to find a therapist that I can start to see tomorrow and also get clarification about wound management.  Yesterday the plastic surgeon sent me home with orders for occupational therapy and home health care to do dressing changes, but the case manager called to tell me that if I'm able to go to OT out of the house, I'm not home-bound so don't qualify for home health care. 

on the fly

Sometimes change is needed.  Like walking into a B&B that got some great reviews in the press and on-line, but finding it not so nice and walking right back out.  How 'bout that hotel we saw back at that traffic circle?  Got a room?  Excellent.  So my sister-in-law and I are at the Hotel ZaZa.  Just a normal hotel room, with 2 beds, no fancy suite, but clean and comfy.  She got to take a walk and go to the gym.  We went out for sushi -- and Robata (Japanese grill) -- for dinner.

I haven't taken any medicine other than two Tylenol all day for pain. That is really pretty amazing to me, but I remember from the surgery in August that the graft donor site hurt more than my arm, so since I didn't have a graft this time ... It is certainly fine not needing prescription meds.

Will find out more tomorrow in terms of next steps.  And, with the dressing change, I'll at least get to see the size of the new hole in my arm.  And maybe, I'll get the fiberglass splint to replace the plaster cast, which will be a lot lighter.  Then, I can go home.  But probably not until Tuesday.

Talked to Bill and Ben.  They're fine.  It's still super cold at home -- going to be sub-zero again tonight.  Ben promised not to wear shorts tomorrow, but was holding out for riding his bike.  Mostly, I believe, to gig me. He had a question for me about LA homework.  That doesn't happen often!  Glad to know that, as annoying as I am, at least he sees some potential that I'm useful every once in a while.  ;)

so long, ECRL

I was discharged from the hospital today, after demonstrating that I could keep food down by eating breakfast.  (Yesterday, I couldn't even keep water down!) Bill transferred me back to Rotary House, the hotel that's attached to the hospital by skybridge, and then left to fly home.  I'm here tonight and then when Shelly gets here tomorrow, we'll go together to the Modern B&B for the rest of our stay here in Houston.  I had a room service dinner and will probably retire after I'm done with this post.  Thanks to all of you who are emailing, FBing, and texting your support.  It's nice to be surrounded by the circle of life.

I saw Dr. Oates this a.m., the plastic surgeon.  He explained a little more about what happened yesterday and the game plan going forward. All of the diseased cells they found yesterday were in my extensor carpi radialis longus muscle, the ECRL.  This muscle allows me to raise my wrist, but there's another muscle that also does that job.  In fact sometimes he has taken this (or that other)muscle out to use elsewhere for a repair.  So, it seems like one that is relatively easy to sacrifice. Especially since I don't play racquet sports.

There are two reasons they didn't do the graft yesterday.  First, they wanted to wait for the final pathology report (10 days to two weeks) to make sure that, by taking the whole ECRL, they did in fact get a safe margin. They didn't want to do a graft, and then discover they had to go back, again.  Second, the tissue that's there still isn't completely healed from the radiation.  By using the synthetic material first, they will allow the site to heal so that a new graft is more likely to take. The synthetic, even left alone, would eventually provide the scaffolding for new skin to grow, even without a graft, but getting a graft will speed the process substantially.  However, it's still going to be at least six weeks in a cast (as he said, the same as a break would have been).  And there's some other near term fun, like the VAC machine that I'll have to wear when I get home 24/7 until the next surgery (apparently the size of a small purse).  I'll learn more about that and what the next several weeks entail when I see him Monday.

The right thing to do.

Bottom line: Surgery went fine. They did find more cancer so I lost one little muscle (Not sure of its name) so it was the right thing to do. Because of that, however, I did not get the new graft of my own skin and will have to have another operation after the first of the year. Instead, I have a synthetic graft. Meanwhile, I will probably get to go back to Colorado on Tuesday!

It was a short night with very little sleep for either me or Bill. It was nice to be in the hotel attached to the hospital though because we got up at 4:55 AM and were there for my 5:15 check in. It\'s quite a large place. I was in operating room 15 of 30.

According to Bill, they found several small "infiltrations" of cancer cells in the adjacent muscle tissue. The procedure in the O.R. is to send "frozen samples" to pathology for a quick assessment. They continue to cut until there is no evidence of remaining cancer cells, "A safe margin."  However, a full pathology report takes up to two weeks to be (more) certain that they got it all. This is why they did not complete the full graft today. Instead, a PriMatrix synthetic material is used as a scaffold to improve re-vascularization of the damaged tissue. After the pathology comes back, assuming that it's clear, I can get the same kind of graft I had last time. That's a partial skin graft taken from my upper thigh. That would happen after the first of the year. Or, if the pathology shows that there are more bad cells, they would remove more tissue at that time.

There  are two muscles on the top of my forearm. Both can be recruited for the same motion. He took out the smaller of the two. I'll have some PT/OT work to do but right now I'm in a cast.

Logistically, I may be released as soon as tomorrow but I'll have to stay in Houston until at least Monday. I'll see the plastic  surgeon who will change the dressing, and give me a splint and sling. We think, then, I'll be free to return to Colorado. But, the one thing that is evident from the last several months, is that this too is likely to change.

show time

I had tests from 6:15 am to 6:15 pm today.  The same as the last time I was here -- CT scan, MRI, chest Xray, blood work.  They did a pregnancy test, too, which I thought was hilarious (albeit a bit annoying).  I talked to the surgical oncologist (Satcher), and his team, and they're confidant.  More importantly, I met and spoke w/ the plastic surgeon (Oates), who I hadn't met before. While some of what he said was different from what Satcher had said, and what I'd read, he's also confident, so that's good.  Also, they moved the surgery up to the morning, so I have to check in at 5:15 am.  No eating/drinking after midnight, but who would want to eat/drink at 5 am?  No lotion after my shower, either -- my skin's already dry!  Both surgeons thought my radiation and graft looked great; Oates was shocked at how dry my graft donor site was (the difference between Colorado and Houston -- it still feels like a sauna getting off the plane here).  I'm going to try and get some sleep before the big day.

on my way

It was snowy and very cold this morning, but the Prius with studded snow tires is awesome and we got to our meeting on time.  Lots of folks wished me well, and there were emails, texts and calls coming in all day which was nice.  one of my colleagues shared that his 24 yr old, soon-to-be daughter in law has cancer.  My situation is depressing in many ways, but I can't even imagine being that young with a cancer diagnosis.  I told him he should be proud of his son not to have shied away from the girl he loved because she was ill.

When I got up to leave for the airport, I have to admit I almost burst into tears.  It's show time.  I'm off to surgery, and some level, as small as I will work for it to be, of disability.  Scary.  And sad -- for me, my family and friends.  Then, the drive down I-70 to the airport SUCKED.  What should have been less than an hour took close to 2.  I was stressed about making my flight, which had been reporting on time all day, but I should have known better.  It left an hour late.  Actually, given how bad the weather was, that's pretty good.  We'll be in Houston at 11:15, which means I should be at the hotel by midnight.  Glad I got into the hospital hotel last night, after 12 days on the waiting list!  Those random calls can be winners, as the guy at the desk the night I made the reservation explained.

Testing starts at 6:15 am tomorrow.

Time's Up

Running around getting packed, watering the plants, sending emails and hoping I've taken care of everything that really needs to be done. 

Meanwhile, Ben came home from school sick; he's been nursing a cold for several days, and even though he still doesn't have a fever, he was pretty miserable.  Still, better than his best friend who had whooping cough (and maybe strep). 

And, meanwhile, they're predicting 6 to 12 inches of snow overnight and tomorrow.  And frigid temperatures (not as bad as Thursday and Friday when it may not get above zero).  Great day to fly to Houston.  Even better day to drive to Golden for a 7 am breakfast meeting!  I am glad, though, that I got the studded snow tires put on 10 days ago after I slipped down the hill here on the sheet of ice!

I washed the writing off my arm.  Too bad.  It was cheering.  But I'm not sure the docs would have understood.  All my appointments are scheduled for Thursday -- starting at 6:15 am, and going through 4 pm.  So even if my MRI is 2 and 1/2 hours late (like it was last time), Bill and I should still be able to make our 7 pm reservation at The Reef, which is a seafood place that Bon Appetit rated #1 in the country last year.

The one appointment they haven't made yet is for the new plastic surgeon.  It totally freaks me out.  Satcher's team doesn't seem to understand that the reconstruction is as important to me as the cancer removal, in terms of quality of life.  Frustrating.  But as many of you have said in the last week, MD Anderson's reputation must exist b/c they really are good treating cancer.  Certainly it ain't b/c they're good w/ logistics or patient accommodations or those aspects of medical care.

Getting ready

I got my new schedule for Houston later this week.  Assuming that our airport isn't shut down by the big snow storm and Artic cold front that is blowing into town as I write, I'll be getting on a plane Wednesday evening, after an all day meeting in Golden.  Then, my tests start at 6:15 am.  Oy!  I'm hoping I'll be done in time to go to dinner w/ Bill @ 7 pm, but we'll see.  My MRI is scheduled for 4 pm -- the last test.  But in August, my last test was 3 hours late, so who really knows.  They changed the plastic surgeon for the surgery.  As I've said before on this blog, while I really really care about the cancer surgeon doing a good job, I feel that the plastic surgeon's role is equally important with me, because my quality of life going forward is dependent on how well he puts my arm back together.  So, knowing that the plastic surgeon is not the one my cancer surgeon would have chosen as his #1 is a little disconcerting.  Especially on top of the fact that I will meet him the day before surgery.  And on top of the fact that the appointment still isn't set up.  But I'm good, right?  I printed out the article about forearm reconstruction after sarcoma removal to give him, just in case he hasn't seen it. ...

tatooed

Some wonderful friends came by this afternoon for a visit, a drink, a nosh and to sign my arm.  This photo doesn't do it justice (nor is it a 360, which is really what would be best):

Ridiculous, I know, but it makes me laugh -- which is supposed to be the best medicine.

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!

Risks and Scenario Planning

The amazing thing about my poor burned arm is that, actually, as disgusting as it looks, all the blistering and peeling suggests I've begun to heal from the radiation treatment.  I guess what I didn't realize when I was told that my arm would get worse (after the treatment ended) before it got better is that this didn't just mean it would be more painful/swollen/red (indicating I had reached maximum dose, and active cell destruction, with maximum white blood cells dispatched to fight the killing), but that it would have to go through this blister/peel phase that would make people avert their glances.  I'm assuming that by the time my mom shows up a week from Friday, it's going to look like no big deal -- as it did two weeks ago.

I saw my internist yesterday (at a funeral service for one of Ben's schoolmates' mom's -- which is a tragic and shocking, but different story).  She said the radiation had probably killed all of the cancer cells left after the last surgery.  Which leads to the obvious question:  If the radiation "cured" me, why have another surgery -- especially one that will result in some level of permanent disability? 

On the one hand, if the radiation killed all the cancer cells, then it would seem that I've had enough, successful "treatment."  On the other hand, there's all the scary information (which some, like Sue Levy, say I shouldn't be reading in the 1st place) about wound complications, trickiness of reconstruction and levels of permanent disability from a surgery in the forearm where there isn't a ton of tissue, but the surgeon still needs to take a safe, i.e., wide, margin around a sarcoma.  And, there's the data on soft tissue sarcomas still resulting in a high level of amputations, because, to me, 15% is high, even though it's down from 70% two generations ago.  Finally, there's the pathology report which says (confirmed by literature) that the risk of this kind of soft tissue sarcoma metastasizing is quite low.

With all of these factors, how do we (me & my family, notably Bill) weigh surgery, with its certainty of some disability and a small, but still real risk of recurrence, against the slightly less small risk that there's cancer left in my body that will now start to regrow.  The medical literature and traditional Western providers are in complete agreement that doing the 2nd surgery is a no-brainer.  But if there's no sarcoma cells left, and they were of a type that is highly unlikely to metastasize (and kill me), then why not wait to see if the cancer returns, in which case I could have surgery then, and not commit to some level of permanent disability for the next 40 years? 

Nobody freak out -- I'm not suggesting that I'm abandoning the current plan.  Maybe it's having spent the last two days considering lots of scenarios with my colleagues in a work context -- something we do all the time.  We're always pushing and engaged in scenario planning.  So aren't there a couple scenarios here?  Is there a risk that's small enough that would change the calculation?

no good deed ...

I've had two conversations w/ my good friend Barbara ("Aunt Barbara #2," my college buddy, not my sister in law, although I've also talked to her) in the last two days.  She's coming to Houston to help me there, and as a result of my call last week w/ MD Anderson, she's going to have to change her plane tickets (because of their saying I'm going to have stay in Houston after I get discharged from the hospital), which she bought nice and early to avoid having problems.  Of course, she's a mensch now, refusing even to discuss how this glitch is costing her hundreds of dollars more than she paid initially.  It's part of why I'm so mad at MD Anderson!

The other conversation was about the photo of my arm that I posted yesterday.  After saying, "Yes, show me, I love gory stuff," today after looking at yesterday's post, she said, "OK, maybe I don't really want to see YOUR blood and guts."  So I apologize to the rest of you.  And I apologize to all of you who I've seen in person (like Linda from Ladies night) who are NOT interested in feeling how hot my arm is.  For all of you who I've offended w/ first hand yuck, I apologize.  I can't say that I'm going to stop posting, or offering, but I'll try to be more understanding that not everyone thinks looking at the photos (or real thing) is fascinating, or even warranted!

On a more everyday note, it drizzled most of the day, and was cold, but Val and I still walked (Dakota Ridge) and she didn't seem to be complaining much.  I went to Denver to teach the water quality class to Star's DU Water Law Students, which is always fun.  Scott dropped by (he's in town for Colorado River meeting the next two days) to have a drink and hang a bit before he went to dinner w/ fun friends, also here for those meetings from out of town.  Always great to see him, especially for Smokey, who lets Scott handle him in ways he won't let anyone else (at least without biting).  And, per Ben, Wendy brought chocolate, after checking out the photo in yesterday's blog.  See above ...

zombie

When I had surgery on 8/1, I came home w/ a pain block, but after it wore off, I took exactly one pain pill, of the 30 of so prescribed.  This weekend, however, I've taken several.  Odd how the pain of the radiation side effects is substantially worse than a tumor extraction & skin graft.  My arm is so swollen that it feels best when I rest it on my head!  (i.e., elevated.)  But mostly it's just shocking to me that something as localized as the radiation on my arm (7 cm laterally from the excised tumor -- so from a inch or two above my wrist, to just above my elbow) can hurt so much.  The need to be distracted is every bit as extreme as the pain.  And, as predicted, my arm looks -- and feels -- a hell of a lot worse since the "treatment" stopped on 10/22.  I'm pulling for the techs to be correct insofar as they said it would probably only get worse for 5-7 days (and I'm advocating 5), before it started to get better.  Sadly, I'm really too distracted to be able to post anything else. ...

MD Anderson is all about teams.  And the description I got in August, and that should still be valid of my upcoming surgery in December, is pretty impressive -- 3 docs in the O.R., a cancer surgeon to remove the cancer, a pathologist to confirm it's done, and a plastic surgeon to put me back together.  I just wish that they could be as seamless about logistics.

I had a disconcerting phone call w/ my "patient advocate" in Houston today.  She seemed almost annoyed that I had called a few days ago to try and get more info about when I should make plane reservation to return to Colorado after my 12/11 surgery.  She reported that the plastic surgeon, who has control over the post-op care, agrees with the cancer surgeon that I'm likely to be in the hospital for 3 to 7 days -- except he's saying likely 7 days.  What she added, though, was new information for me, and not something the cancer surgeon's team had previously shared, or thought to share:  I should remain in the Houston area for a week after discharge to make sure that I have access to MD Anderson if there's any complications -- or if I need follow up appointments or treatments (not that they can say now that I will, or won't) -- because "our doctors don't practice medicine over the phone).

In my case, that means that I'm looking at being allowed to come home from Houston on 12/24.  Wouldn't it have been nice to let me know this previously?  Or, at least, not to have sounded so annoyed that I'd asked the question today now that it's getting to be time to make reservations?  Not that our family celebrates that holiday that occurs on 12/25, BUT even for us, it's a big cultural event.  A great day to ski (especially in the a.m.)!  From a more national perspective, it certainly affects not only ticket availability, but the cost of plane tickets. The patient advocacy part of her job seems to have broken down a little.

Meanwhile, my arm is blistering.  Mostly, though, it's just really damn hot.  I did get another couple cards today.  Plus, one of Bill's friends brought dinner, which was not only yummy, but I didn't have to cook!

Ben was so flu-ey (congested, sore throat, runny nose, low fever) that he came home after two classes today.  He slept for 4 hours.  Then, while he was announcing that he felt better, he suggested that he should go to the football game.  I, on the other hand, suggested that, if he was too sick to be at school @ 3:30 pm, he was still too sick to go to the football game at 5:30.  Call me crazy.  Or a stick in the mud. Really?!

Ladies Night Birthday

As many of you know, I am part of an amazing group of women who gather on a weekly basis -- and have for 25 years -- to be with each other and discuss the week.  Our husbands think we talk about them, but honestly, this is not the case (although it does happen).  And we don't just talk about our kids, although sometimes one or more of us does.  Sometimes, although not every week, or even  every month, we talk about current events, especially around this time of year, when we sometimes bring ballots and discuss our civic duty.  That wasn't the case this evening.  Sometimes we discuss our moms.  And there's lots of weeks when we talk about our own challenges and opportunities -- work, personal, and social.

Tonight, we were at the Boulder Outlook.  There was a blues band from Israel playing. We all agreed that the lead singer, a  beautiful, slim young woman with long wavy dark hair in a Tibi dress, who sounded like an older larger Hazel Miller type woman, didn't sound Israeli, or even at all like a woman who looked like she did.  But, isn't that what's great about voices? In fact, I was listening to her during a break and she sounded Southern.  But it was fun.  After we got tired of not being able to hear each other, we went outside of the bar/music venue, into the hotel atrium by the pool, and played pool.  Donna is good, the rest of us, not so much.  But, we had fun, because we're the ladies.  Not great pool (someone -- i'm not going to say whom -- knocked the 8 ball, with her hand, into a hole to end our misery!), but honestly, there was no one else there, no hot group of guys waiting to compete, so who cares?

To continue the warm, fuzzy theme that my husband established for my birthday present, Marilyn (my angel) got me warm fuzzy socks and a warm fuzzy scarf.  Yea!  Plus, I got two cards in addition to the one from Ladies Night.  One from my mom (I won't even say how upset she'd be if I sent her a card that was two days late) and the other from my friend and former colleague Laura in MT.  So sweet, both of them.  Never mind, the two emails I got today, as well as a phone call.  One of the emails was from my first friend -- from nursery school (how many of you remember when we that's what we called pre-school) -- with whom I've barely corresponded in decades.  I've re-read it several times.  The phone call was from a woman who started a Colorado enviro group, who is one of a cadre of women that my cohort all think of as role models, and here she is telling me I was a roll model.  I almost cried.

Meanwhile, my arm is getting redder and hotter and more bothered.  Aargh.

all done with this phase

This is what a fully radiated arm looks like -- swollen and burned, but done!  Gave the techs gloves from Title 9; Ben said last night, "Why do they get presents, Mom?  They were just doing their job." But some jobs are hard (how can it not be depressing -- Debbie Rothley, Halley Nagiah -- to spend all your time every day with cancer patients).  And they were very sweet.  They want me to come back and show them my arm post surgery.

Took Val for a walk in the glorious fall sunshine when I was done.  Then I came home and sat at my desk and apologized to all the folks who sent me emails about the spam that went out from my account this morning at 3 am.  I did wonder whether some smart ass spammer chose me because s/he was cruising Facebook looking for birthdays.  What a present!  I did get beautiful flowers from my brother and sister-in-law, plus cards (including the instant classic from B Dau, who always manages to find amazing cards), plus the softest robe ever -- Ben wants one out of the same fabric.  And, yesterday, this mystery jar of mustard from Napa Valley, where both of the Uncles Michaels have been in the last couple weeks, although each denies having sent it.  And body butter from our 'always there' across-the-street neighbor, Laura Ghayur, who really is always available to help out w/ dog and child and who brings

Later in the afternoon, Bill and I went to school conferences.  We saw five of his six teachers over the course of a couple hours that Marilyn Cohen (of Ladies Night) once called teacher "speed dating."  Of those, five think he's great -- notwithstanding that he's woefully behind in his homework.  Only one -- ironically the youngest and newest to teaching -- remains someone to whom he needs to prove himself.  And even that guy told us a story about Ben making a social decision that would be beyond most 9th graders' capabilities.  Now we just need to get Ben back to a happier and psyched place, where he both gets his homework done and looks forward to going to class.  Not a small task, we know, but this afternoon was somewhat reassuring.

After conferences, we picked Ben up at climbing and went to Zolo's for dinner.  We had a nice time as a family, which given how cross-wise we all got yesterday, was nice.  (Yesterday, Ben told me that everything I did was annoying, and I pointed out that was without my even trying to be annoying -- imagine what it would be like if I TRIED!)

Finally, there's been some amazing email traffic on the ACOR sarcoma blog.  First, Mimi (grandmother to everyone) posted a new article yesterday on reconstruction of soft-tissue sarcoma on the forearm.  If soft-tissue sarcoma is 1% of all cancers, soft-tissue sarcoma below the elbow is apparently 1% of all soft-tissue sarcomas.  Lucky me to have something so rare.  The article (out of Japan) was about the difficulties -- and successes -- in doing reconstructions on the forearm and hand, in part given how little flesh there is compared to how much structure (muscles, tendons, veins and bones).  Thus, the likelihood of ending up with real damage once the safe margin is taken.  The authors discuss using a lat or a muscle that runs along one's inner thigh (the gracilis) to do reconstruction.  Sort of unbelievable. 

Then, there was an exchange that started with Mimi posting and asking about experience or technology for dealing with "deep wounds."  There were a number of posts, and then someone piped up to say, she knows people spend a lot of time trying to avoid amputation, but she lost her leg two years ago and she's learned that she can do everything she needs to and even that she was used to doing, albeit in a different way now.  So she wonders why she fought so long to avoid the amputation.  And she's talked to lots of other amputees who feel the same way.  Safe to say that that post totally shut down the thread.  Funny in a sick sort of way.

Tomorrow is "graduation day"

The techs call it my "graduation day."  Tomorrow will be my last treatment.  They said to expect the side effects to continue to get worse maybe through the weekend and then start to abate.  Because the beams are killing cells that are growing, cells that get zapped tomorrow will be dying (and the good ones, we hope regenerating) for several days after, which is why the symptoms, now including chills, in addition to swelling, itching and local pain, don't stop immediately.

Meanwhile, I'm still waiting to hear from the plastic surgeon's physician's assistant.  If he doesn't call by tomorrow morning, I'll call my patient liaison to try to get him to talk to me.  I bought a plane ticket on the hope that I can come home when I'm released from the hospital.  Hope that turns out to be true!

good thing there's only two more

The radiation tech commented on my arm being swollen and the Doc examined my arm for a while, but ultimately said it was good that I'd get the weekend break, and then also only had two more days.  Safe to say that it's hot, bothered, itchy and sore, which all indicates, of course, that the radiation is working, i.e., killing cells.  So my body has sent in the white cell marines.  At least I can supplement with Tylenol (but not ice, because they want it to be hot).

Meanwhile, I called MD Anderson to try to get someone on the reconstructive surgeon's team to call me back.  No luck today, but maybe Monday.  I'm trying to figure out whether I can come home to Colorado when I'm released from the hospital, or whether I'll need to stay in Houston.  With the surgery in August, they put a cast on the skin graft site, to protect it, and I had to go back after one week to get the cast and special dressing changed, and then the next week for the stitches and another check.  But that was outpatient surgery.  This will be more complex, I'll be in the hospital for longer, but from a planning standpoint, I don't want to be released from the hospital at day 5 and fly home if I have to return to the hospital on day 7.  And, given that a week out is 12/18, obviously lots of air travel after that will be happening during the "holiday season."  The cancer surgeon's physician assistant has no idea what the protocol might be, and I've not had a face-to-face consult with the reconstructive surgeon, so if I can't get some basic idea from his PA, I may need to go down there again to get more info.

We woke up to snow today -- about an inch. But it was sunny all day, so most of it is gone, and the weekend is supposed to be sunny and back to 60 degrees.  Our maple and catalpa tree still have most of their leaves, so the maple's boughs were touching the ground in the morning; now they're lifted.

I'm so tired ...

cooking

4 more radiation treatments.  One of the things I notice now about my arm is how HOT it is.  Just like a really bad sunburn.  It's woken me up the last few nights.  Of course, the directions say do not apply cooling to it, b/c this is part of the treatment.  Certainly seems to be cooking inside there!

6 more

I went to radiation this morning, and then took the pup to the groomer this afternoon.  She's much more acceptable to the humans in the pack now -- washed, trimmed, teeth brushed, de-burred, etc.  Allowed back on the couch in my office.

My mom called and wants to come visit -- "to put her arms around me."  I'm trying to decide whether I should go to Cleveland or let her come here, given how much I know she doesn't want to travel.  Need to discuss w/ B&B to figure out which is less stressful for us.

With no school today, Ben did a bunch of Spanish homework, after having done science and math earlier this weekend.  We're all looking forward to the day he'll be caught up -- which we all think could be tomorrow or Wednesday.  As Bill says, it would be a most excellent birthday present for him.  Not that we're doing much of a birthday celebration.  He's going to his Best of the Best CEO Exchange group tomorrow (like his Ladies Night, they've been meeting for decades now, albeit a couple times a year as opposed to every week), so we'll celebrate Wednesday.

We woke up to a thunderstorm this morning, which is really unusual.  Thunder is almost always a late afternoon/early evening event in Colorado.  And then, at 7:45 am, it HAILED.  Good thing Ben did have the day off from school because that's just when he would be riding his bike in the morning.  My car windows were cracked, so when I left for radiation, there was a pile of tiny little hail stones on the passenger seat.  Crazy!

Val, the Dog

Everyone in our household is stressed.  Ben is stressed about homework.  I'm stressed about the Big C, and the fact that Ben has so much homework.  Bill is stressed about many things, including the ones already mentioned.  What's interesting is that Val, our dog, who expresses her stress through her GI track, is also stressed.  She's not even wolfing her food down, as per usual; sometimes her food sits for hours before she eats.  But I had to use four bags on our walk today.  Tomorrow, she has an appointment with the groomer, because, as Ben said, she wreaks.  It's fascinating to me how she absorbs the stress level in the household.  I guess there is one being in the house who isn't stressed -- Smokey, the cat.  At least he's eating his normal voluminous quantities.  Ever the iconoclast!

mild side effects & the costs of medical care

The side effects are beginning to pile up, although they are each mild.  My arm is looking pretty sunburned -- we can trace the line from the radiation on my arm, like some weird bathing suit strap line back from when I used to try to get tan.  Plus, it itches.  I'm slathering on copious quantities of the Tulipan cream they gave me. 

The fatigue is also appearing pretty regularly (mid-afternoons).  Naps don't provide relief; I guess because it isn't from being tired due to loack of sleep. I can stave it off if I'm highly focused on something else.  I used to like to do the hardest work in the mornings because that's when I feel like I'm the sharpest.  But for the next month, I guess I'll just have to reverse that. All that said, if this is the worst of the side effects, I'm lucky.  Seven more radiation treatments to go. 

I got a statement from my insurance company yesterday.  The cost of the radiation treatments is pretty stunning, even with the 2/3 discount that the insurance company gets.  No wonder getting cancer can knock folks out of the middle class.  I appreciate that these machines are amazing and super high tech.  And, especially after looking at these charges, I'm so appreciative that I have insurance that covers me.  But the numbers are stunning.  One day's worth would be a big bill for most families, and my course of treatment is 25 days worth of these charges.  Never mind the costs of the surgery in August and the tests done in preparation for that. Or, the costs for all the tests that were done to get ready for my 1st MD Anderson appointment and that will be done again before surgery in December.  And the costs for the next surgery will likely be extraordinary, because they will have three specialists in the O.R.:  the cancer surgeon, the pathologist and the reconstructive surgeon.  So easily six figures, just for that day. 

Every day that I get an envelope from my insurance company my anxiety spikes, as I wait for the one with the letter saying they aren't going to continue my coverage into 2014, or that they're going to double my rates.  I know that the whole pre-existing conditions term kicks in next year, assuming that the President stands firm on not negotiating reductions to Obamacare, but -- just like what we went through with Bill's knee replacement -- it's still nerve racking.

Meanwhile, Ben's in the basement doing homework -- let's hope it's actually getting done.  And tonight is the homecoming dance.  Bill was talking about how complicated that always was.  And how the whole teen dynamic just makes it complicated.  It's funny how it wasn't complicated for me because we just didn't go to many dances. I went to more in junior high -- I think I went to exactly one during high school.  So it wasn't even an opportunity for angst.  We were too cool and out doing other bad girl things on Saturday nights, especially in the winter after the hockey games. 

wait & watch

So the consensus from the Docs seems to be that the new bruise on my arm is not some nefarious underlying cause, but a bruise.  (Sometimes a cigar is just a cigar.)  Apparently, radiation therapy on a lower extremity (i.e., below the knee or elbow) routinely causes bruising in people who are prone.  That said, both the surgeon who did the initial surgery in August and the radiation doc said to wait and see whether it clears up on its own, w/o leaving any evidence behind, over the next few weeks.  So that's what I have to try and do.  At least I'm 2/3's of the way done.

Meanwhile, I got my hair cut short -- Debbie Rothley or Liz Storer style.  Curly girls don't get "pixie" cuts -- they requires straight hair.  My hair looks like it did after I got it cut the spring of my senior year in college because I wanted to look grown up.  Hasn't been this way since my 20's.  It will work well for the month that I'm in a sling, and it doesn't look bad (Ben said, "nice haircut" but given that he'd been so angry he wasn't speaking to me the day before, I'm not sure exactly how to take the comment), but I'm not sure I'll keep it after I'm two-handed again.

The whole business with Ben is distressing, and there's been more snapping in this house than ever before.  We have to be careful not to degenerate into full bore negativity -- especially not now that we most need the power of positive thinking, and notwithstanding that we appear to be standing not at the threshold, but in the middle of classic teen-dom.  With homecoming this weekend, no less -- oh my.

lump

Last night, after I wrote in the blog, I was moving our big, heavy toaster oven and hit my forearm, just below the graft, on the corner of the cupboard.  Not a big deal.  The sort of thing, though, that in the old days -- back when I had a venous malformation on my arm -- might have caused a little lump. 

Guess what?  it caused a little lump!

 

Now what's alarming about this, of course, is that, back on August 1st when I had surgery to remove the tumor from my arm, the whole point of the surgery was to remove what was causing my arm to get these lumps. 

 

I understand that this new lump isn't cancer. So, it isn't an immediate threat to my well being.  HOWEVER, if the sarcoma was a "transformational" tumor, i.e., it was damaged tissue that wasn't cancer, but somewhere in the last five years became cancerous, then I would like to feel that all this treatment should not only eliminate the cancer, but it should eliminate the cause of the damaged tissue that turned into cancer.  That would mean eliminating the source of the problem.  so it wouldn't happen again. 

 

Eliminating what makes my skin go lump in the night.  Bill and I both just stared at this lump last night, trying to grasp that it had happened again.  And, sadly, both my internist and radiation oncologist said I needed to talk to the MD Anderson team.  Yet, for the first time that I've left them email and phone messages, they didn't call back.



driving

So many people tell me I'm tough and determined, I just believe them and wipe all doubt aside.  It's just how to turn off that little voice off to the edge of consciousness, barely audible.  And yet also somehow dominant, like the white noise that becomes Chinese torture rather than background.

Early radiation was fine -- the radiation techs seemed genuinely appreciative for the socks ("We love Smartwool!"). 

The drive down to Colorado Springs wasn't bad.  I missed the 1st two panels, but I think that was OK.  It was a lot of economic theory.  Everyone who needed to see me (who'd invited me -- or highly suggested I come) saw me.  Told the Cowboy about my sarcoma.  Good doctor's son that he is, he asked some discerning questions and looked worried. Eventually, he gave me a big hug; he's like an upright couch -- very comfy.  Talked to Jim B, who had cancer a while back, but recently had a heart attack -- now he's eating vegan, walking during lunch and has lost 17 pounds in a month.  He didn't even eat the salad we had at lunch, b/c he's being that careful.  Maybe I'll get there, although that's honestly as hard to imagine as being seriously disabled.  Talk to a couple other ag guys, all of whom I'm friendly with.  I said to Bill I thought a couple of them, with whom I jousted a decade ago (or more) have matured, just like I have.

Had a drink w/ Dan K.  Always good to hang out, build bridges, and besides, if I'd left right after the conference, it would have taken 3 hours to get home (like Sunday night coming back from Vail).  This was much nicer.  Again, I remember the first time we met, on a Water 2025 panel. I said something snide about Klamath and he railed against enviros, all of whom used ESA litigation to attack irrigators.  We were most definitely not friends.  Today, we traded Reclamation and other DC gossip, compared notes about some of the folks who spoke at today's conference, and shared stories of the worst years of our lives.  What a difference a decade makes.  Plus, we spent just the right amount of time that the drive home was painless.

A full weekend

It was a beautiful day today.  I hiked Sanitas w/ Val and Vicky M.  It was a little crowded, because so many trails are still closed due to the flood.  But great to get out.  Especially since yesterday, Annie and I (and Val and Luna) did a small loop at Chautauqua. 

So I wasn't without energy.  But I'm exhausted now.  Maybe I didn't get enough sleep.  Maybe there were too many pink drinks and port at the Ghayurs last night (which was lots of fun).  But it's seems like I've been tired for no reason each of the last couple days.  I went to a retirement party for Paul Frohardt this afternoon in Denver.  He's been at the Commission since 1987!  There were lots of water quality junkies to talk to, including Mely, who had a 7 week course of radiation.  She said she was more tired for the two weeks immediately after she was done (i.e., after getting the full dose) than during the treatment. 

Tomorrow is the day that Tiffany and Candace, the radiation techs, are opening early for me.  Then I'll get on the road and drive to Colorado Springs to spend the day thinking about the value (and cost) of irrigation water, with a bunch of economists and irrigators.  And here's hoping I'm not too tired to drive home!  Because that would be awkward.

Ben has decided that his failure to do any homework for the first month of school has more to do with a lack of motivation than a lack of executive function.  His solution is that he needs an outside goal to provide motivation.  Bonnie, his coach, suggested two, one negative (avoid summer school) and one positive.  He announced that he thinks we should buy him a computer, so he doesn't have to borrow one of ours, if he gets caught up and stays caught up doing quality work.  With the 1st night of Chanukah falling on Erev Thanksgiving this year, we think that's fine.  Bill's only worried what we'll do if he doesn't make it.  But this is like everything else now; I have to believe the positive version of the story.

Yesterday afternoon was a great Boulder, my fair city, kind of day.  I was doing errands (like buying a fish for Paul's gag gift and the cute Smartwool socks for the radiation techs) when I ran into Jim Martin, who I hadn't seen since he started his new job; we sat outside the Brewing Market and had a cup of coffee.  As we were getting up to leave, an intern of mine from EDF who I hadn't seen for a decade probably came over to visit.  And then Vicki Kurzban and I went flower shopping  (I got pansies and poppies).  I went back to her house and she dug up a bunch of irises that were overgrowing her yard to give me.  Very cool.  I wanted to plant them today, but didn't have time, between Sanitas, groceries and Denver, so I'll do it Tuesday am.  Get to take out some more grass!

52%

Today's the half way mark for radiation treatment. My sister-in-law sent flowers (which are gorgeous; she said she picked a "modern" arrangement.  Whatever -- bamboo and dendrobia -- stunning).   Hurray.  A mile-marker in this process.  And, I heard from Angela today about my schedule for MD Anderson pre-surgery.  It's funny.  They set a 15 minute appointment with the plastic surgeon -- who does the all-critical reconstruction.  It will be our first meeting w/ him.  No wonder MD Anderson is always hours behind schedule.  I do think I'll call the PA and suggest that we might need a few more minutes!

The radiation therapy techs very kindly scheduled me for an early appointment Monday morning to accommodate my need to drive to Colorado Springs for an all day meeting.  I was thinking about what I could get them to express thanks.  Yesterday, I noticed a huge plastic dome at their work station; it was a coffee cake one of their grateful patients made them.  Today, as we were confirming the special time, I couldn't help but notice two boxes and four bars of chocolate!  Guess I need to get something other than sugar to show my appreciation.  If not flowers, maybe socks (since Tiffany runs and Candace climbs).  Candace's husband is going backpacking this weekend.  Oh to be young.  All I could think about was that it snowed today (we woke up to white frosting on the trees) and that it would be a totally different experience to be backpacking this weekend -- and what I'd need to bring to stay warm.  And, of course, the weekend before wouldn't exactly have been a hiking picnic, what with the torrential rains during the second wave of the flood ... I am no longer able to accommodate such swings.

Last night was Ladies night.  Two ladies bought me glasses of wine (the server wanted to see my driver's license -- which I did not have with me -- to prove I was over 21).  One lady said she was concerned I was perhaps too cheerful about my situation.  But not only did the server bring us gratis cookies (to get us to leave at the end of the evening), but I've got dates this weekend to go to the garden store and shop (buy bulbs) and hike.  Gotta love my support network.

The snow today was great.  Fall is here and winter's coming.  Ski season.  Bill made hot chocolate after dinner tonight.  I drank about 10 cups of tea today, including a pot while meeting with my colleague and friend Brad, who's having an interesting journey of his own, assessing what he wants to do with his life, in the aftermath of his brother's death this summer.  Funny -- but serious -- about how life intervenes.  Also demonstrated, of course, by various friends' furlough experiences.  My favorite of these is Andrew's, my former TU staffer.  He's running every day to a fishing hole, fishing until he lands something, and then running back and having a beer -- taking photos of trail, fish and can each day to document his day.

Lots of other thoughts, but this seems pretty random, and possibly boring, so I'll stop. 

Got a decent (for me, anyway) night's sleep last night.  Walked the dog on our "usual" weekday loop (Dakota Ridge - Goat Path - 3rd St).  Ate breakfast and lunch.  Felt tired this afternoon -- and still feel tired now.  Wondering if this is the dreaded fatigue setting in.  I'm two weeks in, so it would be "on time."  Still, hope not.

Meanwhile, enlisted the Rabbi, who promised to call and check in w/ Ben.  He also wants me not just to worry about/care for other people, but to make sure I spent time on me, too.  I actually think this is somewhat ironic advice, coming from a rabbi -- who spends all his time focusing on his congregation.  It made me smile.

Made mole (with an accent -- can't seem to find that in the formatting bar) for dinner.  It's simmering now.  Bill's favorite and something we all like.  Yum.  And this recipe makes enough for two, so we can have it again next week over something different.

40%

Bill came with me to my radiation therapy appointment today.  He was, of course, delighted and fascinated with the machines and the tech, generally.  Loved it.  We met with the Doc who proudly took us to his office to show us the "plan."  This is cross sections of my arm with the radiation dose imposed through swirling colorful lines.  There's only a few place where the highest doses cross the bone; however, there's points both down near my wrist and in my elbow.  And, throughout, there's the secondary dose lines that cross those bones.  So, on the one hand the radiation is highly likely (my friend Deb Rothley talked to her radiation oncologist co-worker who said 95%) to kill the cancer cells.  On the other hand, there's these long-term side-effects.  And when Bill says, "well, you'll just avoid falling on that arm/elbow/wrist" he's speaking as an athlete who might both think of that on the way down and be able to avoid it.  Not sure I'm in that group.

The good news remains that, so far, other than some GI track issues, I'm not having immediate side effects yet.  No fatigue, no sunburn.  Yea!

The hardest part of today was my state water committee meeting, where I had to talk to (and tell) a number of colleagues who didn't know about my cancer.  That's always hard.  As I've learned, I'm able to have one conversation a day.  Two maybe.  Brief mentions more than that may be possible.  But to have to go through the story multiple times is hard.  Especially when the person I'm telling wells up.  On the one hand I so appreciate that my colleagues and friends care enough to be surprised and saddened, it's hard for me to have to go into comfort mode for other folks.  Admittedly, it's easier now than it was a month ago, but it still isn't easy.

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.