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.