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Good times.

Saturday, January 31, 2004

Monday: final meeting with Delaney and Yoon. Then pre-admission, consent forms (surgery, I'm learning, has to be consensual. I thought the six linebackers in white jumpsuits arrived at your door one morning and dragged you kicking and screaming to the house of knives....) and brief physical.

Tuesday: ski.

Wednesday: PET scan. Global, metabolic imaging to make sure the tumor Yoon cuts out is the only tumor in me.

Thursday: angiogram. To assess collateral circulation they'll close off the celiac axis with a balloon. A birthday party in the arteries.

Friday: surgery. Earlier than I'd hoped. But Yoon had to coordinate his schedule with Delaney, Cambria and the IORT suite. At least I can recover from the angiogram and the surgery simultaneously.

Friday, January 30, 2004

Back up to Boston. You're singing in a band.

Thursday, January 29, 2004

Memorial Sloan-Kettering. I'm late. They rush me through registration. I have another id card. Blue like the others.

Dr. Guido Scalabas from Bern examines me. Europe's not footing the bill for research, he says. Assume thoughts extending into geo-politics.

He leaves and I call Andrew. A knock on the door and it's Singer. Last time I was here they kept me waiting in a robe, alone and without reading material for an hour and forty minutes. Note to self: schedule appointments early in the day. Less time for them to run late.

He thinks the surgery is very aggressive. I try to have him explain how he thinks it more aggressive than Yoon. He keeps his cards close to his chest. But he's specifically worried about the vasculature. He appreciates Cambria's take on the collateral circulation but cautions that surgery could disrupt even that. He's not wild about intra-operative radiation. The aorta and celiac axis are high pressure systems that want strong walls. Radiation and surgical shaving for margins clearly weaken vessels.

So the strategy is to have another CT or PET scan with a broader scope. The lungs haven't been scanned since October. Make sure there's no other visible disease. If we're going to take this risk than make certain they get everything out at once. Prior to surgery queue up the wish-list. Start with full resection and have Yoon assess once he's seen the final scans and has me open on the table. Have an exit strategy.

How do I feel? Happy to have so much of Singer's time. He was very gracious. Thorough. He raved about Yoon. And repeated Yoon's assertion that MGH has the best facilities for IORT. I know I won't be negligent to continue treatment in Boston. That's a relief. Now, only to await the results of the arteriogram and make the hard call.

With a nod to Toner, I think I'm going all in.

Monday, January 26, 2004

Just met with Dr. Cambria. He thinks the superior mesenteric artery has already compensated for the loss of circulation from the hepatic artery. Grafting might be unnecessary. The surgery would be much simpler without having to rebuild the arteries.

They'll set up the arteriogram to decide.

Meeting at Memorial, then arteriogram, then final consultations with Delaney and Yoon. One last CT scan and then on to the OR. Oh, are they?

Sunday, January 25, 2004

Slowly getting accustomed to doctors turning nouns into verbs..."The tumor has circumferenced the vasculature." Also enjoying the anthropomorphization..."The vessel is attenuated but not occluded. The tumor respects the vessel walls." But, with a nod to Heather, will the tumor still respect the hepatic artery in the morning?

Thursday, January 22, 2004

When Step has questions I'm not being clear. Surgery/Dr. Yoon offers a change in strategy. All treatment in the past four years (chemo and radiation) was aimed at eradicating this tumor. Slowly. Neither methods worked fully. They did offer "wonderful disease control" as the reports from DFCI read. Disease control lately has meant keeping the same tumor in check. And clearly both are responsible for delivering the margin necessary to cut. Yoon's opinion is: Radiation and chemo haven't gotten rid of this tumor and they've had four years to work. I can cut this out of you now. And you'll likely get a few years off before the next tumor comes back.

Great. That's the reward. What's the risk?

As vaguely discussed the surgery might require a vascular bypass graft. That graft might not hold. Emergency surgery could ensue. All surgery is risky. You're open for hours. Infection. Anesthesia is dicey.

But, in the grand tradition of e-mail Dr. Yoon has written in with the definitive assessment:

"(S)urgical resection would be aggressive but not unreasonable."

Ok....that answers all of my questions. I imagine Officer Barbrady ushering off the onlookers...ok, you looky-looks, nothing to see here...

But, after some follow-up e-mails and phone calls aggressive-but-not-unreasonable seems accurate. Plus, three years ago surgeons in Boston, NY, London and Paris declined this surgery on this tumor. Maybe aggressive-but-not-unreasonable is half-full.

To that end I meet with Cambria on Monday. Special angiogram afterwards "to better assess the blood vessels in that region. This would determine if you would need a vascular bypass graft or not."

Great. Memorial and Dr. Brennan afterwards for the second opinion. Sleep well.

Wednesday, January 21, 2004

Sun setting over Mt. Washington. Light turning yellow. My face is hot from wind-burn. Skiing. This is why you do radiation.

Tuesday, January 20, 2004

Scan on an empty stomach. No stomach distension. If it's empty it's as far back from the tumor as it can be. Surgery and radiation are both easier with good margins.

Joanne brings me into the scan room. Shoes off. Black socks and a thin cotton robe. Bright, sterile room. Chinese dragon hanging in the corner. IV set in the right forearm. Away from the flexible elbow.

Delaney enters in OR scrubs. Oh, are they? He'll read the scan tonight or tomorrow am. No rush. Radiation is on hold. Probably finished unless used during surgery.

First scan with IV contrast. Nancy and Joanne push and pull you into alignment. Joanne didn't watch the Patriots game. Her friend from Florida called with the score. Nancy read all of Mystic River on Sunday. She used to read a lot when she was young. But now, with kids and work, who has time to read anymore? She read all the Bond novels. One a day. In high school she used to hide them behind her text books and read in class. Second scan with sodium bicarbonate. Effervescence for more contrast. A packet of pop-rocks washed down with an ounce of water. Joanne insists, "Don't burp." You suddenly want to. Final scan lying on the stomach.

Done. Tired and thirsty. Waiting for Rob to drive up to NH. Home after a month and a half of treatment. I think the technical term for what I'm feeling is, "Yee-haw."

Thursday, January 15, 2004

Here's the abdominal aorta . The celiac axis is the red, four-way intersection at the top of the aorta, in between the left kidney and the inferior vena cava.
Just off the phone with Delaney. Lots of information that slips away as I write. No treatment tomorrow. No radiation for a while. I have another scan on Tuesday morning. An empty and therefore shrunken stomach will tell us definitively how large the margin is.

In the meantime I'll prepare to go see Dr. Brennan and Dr. Singer in NY.

Dr. Yoon showed Cambria my latest scans and apparently resection is feasible. Delaney thinks the common hepatic artery is already attenuated (thinned or squashed by the tumor) so the body has already started to find alternative sources for the liver. "Collateral circulation." It's started to act as though the artery wasn't there.

Delaney notes the confusion of taking such risky surgery when I'm feeling ok, except for the radiation side effects. Caniff springs to mind, "The leukemia patients come in feeling like shit and we make them feel better. They love us. The sarcoma patients come in feeling great and we make them feel like shit. They're afraid of us." But this surgery will be tricky now. If we wait it most likely won't be possible. Elvis in the background singing, "It's now or never."

No decisions until the vascular study on Tuesday morning is read.

Tuesday, January 13, 2004

Matchday 25: only one field accessed today. Ron and Phil joke about Taxi Driver.

Santana>Santana, Semisonic and the Who.

Across the street and down to the cafeteria. Pizza. Elevator to the 6th floor. Dr. Yoon won't be in for a half hour. Back down the elevator. Buy yogurt and juice. Up again to the 6th floor. Dr. Yoon is in. Sit down in a former shower stall converted into an exam room. Your knees almost touch his. Eat yogurt while he draws your aorta and tributaries on the exam table paper.

What you learn:

The superior mesenteric artery is irreplaceable. Surgeons don't mess with the sma.

Your tumor is not touching the sma.

Your tumor wraps the celiac axis like swiss cheese. You knew this but not that Dr. Yoon will resect it completely. He will, if asked.

The celiac axis is comprised of the splenic artery, left gastric artery and proper hepatic artery.

The proper hepatic artery supplies the liver with 25% of its blood requirements.

The surgery would involve bringing in Dr. Cambria to reconstruct the vasculature.

You could opt for intra-operative radiation. It would be simpler and shorter.

Resection though longer and with greater risks should manage the diease better. You'd get more time off afterwards.

This morning Lucy and Nick Brown taught you that 07:45 is not too early to dance to The Flaming Lips or play with your submarine. This is empirical knowledge. The hospital stuff was just a lecture.

Monday, January 12, 2004

Matchday 24: the machine is bratty. It doesn't want to play with others. You're scheduled for 11:15 but it's 16:30 before you actually get into the gantry. Lucky for you MGH called to warn you. Instead of the waiting room you whiled away the time in the North End eating leftover Indian food.

Ron is waiting for you at the desk. He walks you down the hall and into:
Elton John, live Fleetwood Mac, Player!, Nelly Furtado, Seal and Extreme!

Afterwards you sit in the waiting room waiting for Delaney. Ron comes out and you fire up the new Nascar video game. "Who do you want?" I'll take the #8 car, thanks.

Delaney comes out to check on the standings and then you're in the exam room. He wants to reconsider surgery. He's conferred with the surgical oncologist, Dr Yoon, and they agree Intra-Operative Surgery is a good option. It might offer longer disease control. You have a meeting set up with Dr. Yoon for tomorrow afternoon and a CT-angiogram scheduled for Wednesday evening.

Bullet not dodged.
Response to the good news from the last scan:

It's interesting, Elizabeth. Out of Garcia Marquez, but...

as of a week ago I had no idea surgery was an option. It would have been used only b/c the radiation wasn't working fast enough. Although the intensity had been slighter lower than Delaney wished for the radiation was rightly assumed to be working fine. But since you only have a certain window to administer the treatment the tumor needed to respond at pace. If it hadn't shrunk off of the stomach the surgery would have kept me on schedule. It would have allowed them to use higher levels of radiation than they could safely with stomach involvement....so, it's great I don't need surgery. But imagine somebody walking up to you today and saying, "We might need to punch you in the face. Probably break your nose. We won't know until the scan on Thursday. We'll let you know Friday." And then on Friday they say, "Nope. No need to punch you in the face."

You're relieved. But what's up with all the face-punching talk?

Sunday, January 11, 2004

Hmmm.

Saturday, January 10, 2004

Phil suggests a unique way to simulate the 2004 playoff experience at Foxboro. Open every window and door in your house at gametime. Keep them open throughout the game. You may shut them all at half-time but must reopen them for the second half.

Pray the game is finished in regulation.

Friday, January 09, 2004

Matchday 23: 16 minutes to walk over from the North End. A new record.

Beth is waiting in her nurse's scrubs. Ron calls you in. They let her shadow them during alignment. The clogs show she's trustworthy.

The position of the snout effects the radio signal. The back portal is crystal clear. The left portal is weaker but you still make out: the Beatles, the Wings, Springsteen, Simon and Garfunkel, Gary Wright.

Afterwards Dr. Delaney stops you in the hallway. The tumor has shrunk off of the stomach. He notes a clearly visible layer of fat in the margin. No surgery. He'll decide now how long treatment will last. Likely 35 to 38 total days. New lenses cast and compensators milled at the beginning of the week. Treatment with the old sets continues through Tuesday. Then the remaining course finishes with the new sets.

Bullet dodged. Bring on Tennessee.
Shrinkage, the good kind.

Thursday, January 08, 2004

Matchday 22: tuck away the barium sulfate in the waiting room's fridge. Into the gantry-room. Very quick session.

Tom Petty, Tom Petty and Skynyrd. You block out the Skynyrd because you do need Neil around anyhow.

Then on to breakfast: a pint of banana flavored barium sulfate. You may presume the daiquiri jokes. Into the scan room. Line set in your left forearm for contrast dye. Alignment takes 90% of the hour. Put your clothes back on and go eat grilled cheeses.

Wednesday, January 07, 2004

Matchday 21: your port is clean. Both sides draw freely.

David Bowie, Marshall Tucker Band and BTO.

Tuesday, January 06, 2004

Matchday 20: you're late and they're late and nobody is worse off.

Alanis Morrissette into Zeppelin into Peter Gabriel into Dido into the B-52's into the Counting Crows.

Monday, January 05, 2004

Matchday 19: Delaney calls you out of the waiting room. 09:00. Monday Morning Fun Term: intra-operative radiation. You Latin majors will have no trouble breaking down the term. In the middle of surgery they manually pull the tumor off of the stomach, then radiate with a dosage 7 times higher than usual. Delaney wants to wait until the scan on Thursday to decide if it's applicable.

Chicago, Al Green, Simple Minds, acoustic Stevie Nicks.

Friday, January 02, 2004

Matchday 18: busy waiting room. Back and right fields accessed. Natalie Merchant into Warren Zevon. Your hands are too close to your head and your arms feel as though they will snap from the shoulders. Afterwards you learn that Ron is more beat up from NYE than Phil. Also, the term "anesthesia patients" means children. They can't sit still so they have to be put out. It explains the graceful family with the little, groggy girl in their side waiting room.

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