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Good times.

Saturday, November 29, 2003

Welcome to Boston, Curt Schilling.

MRI went fine. It ranged from lying in a closet, to lying in a closet with the fire alarm going off in your right ear, to lying in a closet with the fire alarm going off in your right ear while being held under water. The previous few lasted over 70 minutes each. This took 45. Software improvements, I was told, save time.

Wondering if this is my last weekend before treatment. Need to focus on the last few days of feeling well and then get down to work. I've been struggling with how to present the details of hospital visits. I want reactions to be informed but also positive. That's a problem. Once the diagnosis comes back cancer you should expect pain and uncertainty. One meeting or treatment session isn't going to change the situation. Delaney is only managing the disease. Marathon running, not sprinting. So if the environment now is filled with scans and meetings and machines and chemicals and scalpels and growing tumors and shrinking tumors you expect neither the worst nor the best. You only expect it to be tricky. Judging the minutiae of treatment seems foolish. Of course getting poked and prodded by nurses and doctors is annoying. But you knew as soon as the initial diagnosis came back that it was going to be so. No good news, no bad news, just news.

Friday, November 28, 2003

Off to MGH in a few hours. After speaking with new Dr. Tsai it seems the MRI determines the strategy and timing of treatment. Delaney won't read the scan until Monday morning at the earliest. Tsai was evasive about potential start dates. It seems likely I'll begin mid-week.

Tuesday, November 25, 2003

Having a final MRI done this Friday afternoon. No definite treatment start date yet from Delaney.

Friday, November 21, 2003

No news from MGH. Curious as to the schedule for the final meeting before treatment. At least I'm in line and the heavy lifting's been done. Hurry up and wait.

Feeling last minute wanderlust. I've been to London and Italy and Paris each fall for the last three years. I want to go for a fourth year. Plus, there's stuff happening over there. Cano and Kristen just had their first child - Margaret, what a pretty name; and Justin says Omala is getting very girly without uncles to toss her around. I regret not traveling.

But it's easy to see that what I partially love about other countries exists in spades in hospitals. A sense of otherness. Although English is spoken they use another dialect in the hospitals. It's just different enough so that you have to strain your ear. You have to pay attention or you'll miss out.

There's also a sense of worldly imperfection in the hospital. Clearly I wouldn't be here if things were going according to plan. But beyond that there's a slowness shared by hospitals and travel. The doctor arrives when the doctor arrives. Like Asian buses. There's a temporary relinquishing of responsibility in both. There's a sense of relaxing, of what the Catholics might call "giving it up." Paul Theroux writes that he loves boarding trains but hates debarking....nothing to do on board but read and write and watch through the window. It's when you're on the street that you have to work hard. Board the plane, enter the infusuion room and it really is in God's and your oncologist's hands. As long as you turned over every stone in finding the right hospital than your mind, at least, can take the day off.

I wrote earlier about the attraction to the specialists. It's fascinating to listen to these guys. Vanguard acumen. After visiting hospitals in Paris and London and NY it's nice to know that Boston is the best city for sarcoma.

Spoke with Penny last week about traveling to off-the-beaten-path places. We shared stories of traveling at home. Stories of nights above 125th Street. Clubs where we stood out. Clubs that weren't entirely comfortable. Where the newness and the anxiety were the experience. That's what will have to matter now. I understand the potential for rationalization. Still, difficult and different will suffice. That's what the next two months will be. It will be istanbul in cold rain. Dirty looks and backs turning on you in the suq in Damascus. 11 year olds throwing stones at you in Mea Sherim. Not exactly Piazza San Marco at midnight. But sufficient, nonetheless.

Tuesday, November 18, 2003

What did I do yesterday?

I went to MGH and was fitted for a hip mold. That's fine. The mold and a corset (their language) should keep me from moving too much during treatment.

I was scanned. Normal. 23rd CT scan since February of 2000.

I signed the consent form excusing MGH from liability for any serious side effect. As expected.

I was tattooed. Hmmmm......

They use the tattoos and mold to align your body each day. The combination helps with accuracy. To get started they shut off the lights in the middle of the scan. Thin red lasers cross the room and bisect your body. How would Tom Cruise escape from this? Using the lasers, the height monitor of the scan tray, a pair of calipers and a ruler for reference they mark off four points with a magic marker and stickers. After the scan the nurse keeps you on the tray. "This will pinch a little." Then, with a syringe of black ink she places four dots on your torso. Done. You're tattooed.

On the ride from the train station Beth suggested turning the dots into the four umlauts in Motley Crue. I saw Tupac, The Resurrection on Sunday so I'm leaning towards "Thugs Life". For now I just had her finish up with four simpler tattoos:

1. "Rock and Roll Never Forgets"
2. An old school anchor. Very retro, very Popeye.
3. "Born to Lose" with a pair of dice rolled to snake eyes.
4. "Gina"

She also started an Iwo Jima scene using the scar on my stomach as the flagpole. That's patriotic.

I must have passed out on the tray because this morning I noticed the nurse also gave me a teardrop exiting my right eye. That signifies I killed a man in prison. But I didn't. Haystick did and he'll say so if you just ask him.

December 1st is not set in stone. I should begin close to that date, though. One more meeting beforehand.

Thursday, November 13, 2003

I'm scheduled on Monday the 17th for a CT scan and mold fitting (they need to keep you immobilized during radiation).

Insurance cleared the procedure. Nothing left to do but wait.

Wish there was a holiday at the end of the month. Something where families got together to eat lots of food. Maybe the night before friends from all over came home and hung out. No presents or parades. Hmmm....

Wednesday, November 12, 2003

A few more notes arrived from the doctors and nurses before the close of work today. Looks like December 1st is the start date for proton radiation. If anything changes it will most likely start sooner.

Very relieved to have such synchronization between Delaney and Demetri. There are a few question marks but for the most part this is an easy decision. Radiation therapy could be the most effective and easiest to tolerate. I'd start this week if I could. Since I can't I'll use the time to tie up loose ends.

Greg and Alessia asked what role family and friends would play during treatment. The short response is: the same role you've been playing. This blog wasn't intended as a substitute for other contact. If you have questions/comments/concerns I don't mind phonecalls or e-mails. I only hoped this would provide a homebase. The goal during any treatment is quality of life. I hope it'll be business as usual for the next two months.

The longer response is: get ready for the worst. Get ready for the best. Get ready for the in-between. Nail-biting is poor strategy. Use the time now to deal with your questions. We really don't know what treatment will do. It's best not to expect anything in particular. Get comfortable with not knowing.

Tuesday, November 11, 2003

Just off of e-mail with Delaney and Demetri. I'm tentatively scheduled to start on December 1st. It's possible they'll move the date up.

7 weeks, maybe more. No chemo at this point.

Will write more later. Still trying to sift through the notes.
No news is no news. Hurry up and wait.

Thursday, November 06, 2003

No word from Demetri or Delaney. Hurry up and wait.

I've been feeling strangely happy the past few days. Almost buoyant. Certainly being around high-caliber doctors is invigorating. It's nice to know there's a plan even if it involves uncertainty. Beyond the contact high I wonder if there's a relief that the tumor is growing. Living scan to scan requires so much focus there's almost a suspension of reality. The need for focus won't change now. But we knew the tumor would grow, it was only a question of when. Tick tock, tick tock. How to describe it? The early morning of a big day at work or an exam. The clock is set for 7:00 but you wake up at 5:00. You know you need your rest to be sharp so you stay in bed. The sleep, though, isn't very good. You keep waking up and looking at the time. It's almost a blessing when the alarm goes off and you can get in the shower.

So, my alarm just went off. I know there are days ahead when I will beg for the uncertainty of last year. But for now it's good to at least be in motion.

Another easy reason for my peace of mind is the change in available therapy. Three years ago radiation wasn't an option. Now science has caught up with me. Demetri told me in May of 2000 that he wanted to keep me alive long enough for medicine to change. So far he's on track.

Finally, I have used the past two years to come to terms with the disease and the larger questions of mortality. I have not all the answers but I'm not shying away from anything either. When I say I'm more concerned about 1 out in the 8th inning it's glib, for sure. It's also true. I can be responsibly focused on a baseball team because I've consistently read, written and talked about living with this disease. I've worked out a lot of the thorny issues with doctors and nurses. I sense a lot of anxiety from family and friends. That's understandable the first day you learn of the growth. Three days later you need to deal with it. Start by asking yourself, Am I ok with this? Ask it out loud. If the answer is, Yep, then proceed with your day. If the answer is, Nope, then figure out how to get to Yep. There's no shame in talking to each other, a shrink, a counselor, a priest. We've been given time. I don't have glioblastoma. Let's use it to make a breakthrough in understanding: what we've been given is sufficient.

Martyrs and Atlas complexes need not apply.

That's the lengthy word on the spring in my step. Better not to question a buzz. Just ride it.

Wednesday, November 05, 2003

Tuesday afternoon/Delaney. Dianna walks over with me from Charles Street. Down we go into the basement of Mass General. Joking that you're in trouble when the machines they use on you are so heavy they have to rest underground. MGH is noisy. Very crowded. DFCI seems like a small town.

Delaney comes in and flips on the light board. The tumor looks larger and is now pressing against the stomach. This contact is problematic for standard radiation and also for proton beam radiation. (The difference between the therapies is in the length of dose. In the former the rays continue through the target area while in the latter the rays stop short at the far border of the target. Proton beam radiation delivers no exit dose. It spares a lot of healthy tissue behind the tumor. You just have to worry about the healthy tissue in front of the tumor.) Delaney still has three good portals. The only hitch now is the stomach involvement.

He suggests short term chemo to lift the tumor off of the stomach. Once the chemo has provided a margin he recommends commencing radiation. My concern is whether Demetri can guarantee shrinkage and, if so, will it peel off of the stomach? If he can't guarantee this wouldn't it be wiser to risk it immediately with the radiation? I'm worried that since the tumor is already growing the longer we wait the harder it becomes to apply any type of treatment.

Delaney understands this and actually agrees with the thought. He intends to speak with Demetri today.

Cycle structure:

Likely 7 weeks of treatment.
5 days a week.
Bank holidays off, otherwise, Monday through Friday.
Side effects include fatigue and nausea. I'll have to give up the job operating the back hoe.
More serious side effects could include stomach ulceration (with potential surgery). Delaney gives that a 1% or 2% chance. Also, there is a chance with any type of radiation that you could develop a late-symptom radiation induced tumor, unrelated to your original diagnosis. So, on top of liposarcoma you'd end up with another form of cancer, most likely some osteosarcoma. He puts those odds at 1 or 2 out of a thousand.

If you decide to roll the dice he thinks he has a good chance of knocking out this tumor. He's still treating an individual tumor rather than the cancer. The effect and not the cause. They call it disease management. You buy time. Sounds good to me.

He has me in line for a slot. Not sure when one would open up. It seems January at the latest.

That's all for now. I'll write again once I've heard from the doctors about their discussion.
I have two meetings to cover: one on Monday, November 3rd with Demetri at DF; and another on Tuesday, November 4th at MGH with Delaney.

Monday/Demetri. Lettie walks over from Brigham and Womens and gets shanghai'd by the process. Demetri immediately relays the growth from the last cycle. July's scan showed an almost microscopic increase. This October scan shows a jump from 3.6 x 2.9 cm to 6.7 x 4.8 cm approximately. I got a D in math lower year but my Clint Mathis shows the tumor to be much bigger.

We expected growth. Maybe not that much growth.

Demetri is calm a la Tom Brady. He's got two drugs.

One, Doxil. Formerly known as Doxilrubicin. Previously it wasn't a good option. Very harsh. But after AIDS patients couldn't tolerate it the manufacturer had to repackage it. To make it more palatable they ended up wrapping it in fat. For reasons beyond me, healthy cells are smooth. Cancer cells are barbed. When this fat-encased drug is infused it bounces around the blood stream sliding off of healthy cells. Once it hits cancer cells it snags on the barbs and explodes, releasing the drug. Demetri calls it a "smart bomb." The beauty of the smart bomb is that it avoids the usual indiscriminate chemo targeting of healthy cells. We'll see. Keep it in mind.

Two, ET-743. Already did that. Ecteinascidin wasn't so hot. It'd be great to avoid that.

Then Demetri switches the talk to Delaney at MGH and the possibility of radiation. He's immediately enthusiastic. Radiation before chemo works well strategically. Delaney has seen the last scan and thinks he has three good portals (alley-ways to the tumor avoiding healthy tissue). He's ready to go. The catch: only 20 patient slots. He's the only doctor administering this outside of LA. So. does the timing work? Can he fit me in? Do I need to fly to LA/Yorba Linda? Finally, will the growth over the past three months change Delaney's mind?

We'll find out when I meet with Delaney at 14:00 on Tuesday, Novemeber 4th. For now I'm thrilled Demetri has options for me. And I'm grateful that he's pushing treatment outside of his hospital. It's nice to have a good head coach. Nice to have a BMW salesman pushing a Cadillac. Makes it clear the Caddy is a bargain.

It's getting late. I'm tired. I'll write more tomorrow about today's meeting with Delaney at MGH. For now, Di and I snuck on to the campus internet so hi-jinks will ensue.

Monday, November 03, 2003

I met with Demetri a few hours ago. The tumor has grown quite a bit. I'm rushing to finish this because the Pats game just started. I'll post more details later.

Brady fumbles on the opening drive.

I haven't done the math yet but I think the tumor's grown about 80% in three months. Demitri thinks treatment makes sense.

Touchdown Denver.

Two options with chemo at Dana Farber. Another with proton-beam radiation at Mass General. Demetri has met with Delaney at MGH and thinks the radiation might be the best bet. I meet with Delaney tomorrow.

Brady throws an interception into heavy coverage.

Please don't confuse this brevity with sadness. We just got called for encroachment. I stress though that I have options. I am grateful for that.

Denver kicks wide left.

Also, good for David for sending Lina home. She had a bad attitude and wouldn't have made him happy.

Branch just hauls in a great pass from Brady. Tie ballgame.

Sorry for the bi-polarism. More tomorrow.

Sunday, November 02, 2003

The scan went fine. Radiology at DF is a well-run department in a well-run hospital. Halloween yesterday so all of the nurses in costume. Strange to have the outside world filter through the doors of the infusion room. Young men complaining while 60 year old women who don't speak English suffer in silence.

Happy to have my port cleaned for another 6 weeks. Happy to make it out of there last night in time for dinner in NC. Happy to climb today.

Results on Monday evening.

Who will be a Yankee first: Ramirez or Little?

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