Cancer by Numbers

Cancer Free

2010-02-01T12:44:00.002-05:00

For any good soul out there who happens to be following, I am still cancer free. My latest 6 month scans were clean, and Dr. Kunta has given me his blessing to have my port removed. It will be a pleasant few months, without worry about cancer, surgery or catastrophic illness.

Again, thank you for your good thoughts.

Niall and Richard.

2008-05-22T09:43:00.002-04:00

Richard and Niall spent a nice afternoon with us. Someone gave me a terrible something that sent me to the hospital, but it was a good day. Thanks to PDub for his photo.

Medical System

2008-05-15T08:20:00.002-04:00

One of my doctors, who I won't name to help him keep his job, displayed an unusually passionate political point of view in his office the other day. A patient brought in a DVD of the Kite Runner to watch during their chemo. He made a comment along the lines of, this goes to show you what happens if you abandon a country and don't finish the job. This was all it took to get the doc off on a tirade. "Maybe the US should have finished the job in Afghanistan, before invading Iraq. You know, do you know, if we were to take all the money we spend on Iraq militarily and just handed cash to the Iraqis, do you know how it would be? 175,000$ for each man woman and child in Iraq. Every year. It is insane. I have to fight to get my patients a CT scan. Every day I am fighting this system and I am tired. I'm going to build a house in India and leave the US."

I was impressed. He is a good man, but I would never expect a open discussion of his opinions in front of a half dozen patients. I guess the cancer community is more like a family. We spend lots of time together getting chemo in a group. We're all pretty vulnerable. Our doctor is a rock star. We hang on his words and revel in his attention.

English Spellings

2008-05-10T18:34:00.002-04:00

I have lived in the United States of America for almost 15 years. I am sincerely fond of the people, the culture and the geography. I am even developing a weakness for projectile weapons, though of an extremely modest calibre. And if you caught that last word, you will begin to see my point: I have yet to be able to embrace the US taste for rashly reworking the good Queen's English.

I understand, language is change. Lovely, true, remarkable. Careers made of it. The inexorable "Great Vowel Shift", "a linguistic fact", you say. You say, "We'd all be speaking some Indo-European proto language, merrily inviting the wrath of an Abrahamic god, if you had your way." And, barring the metaphysical backlash, would that be so bad?

Surely, as a professional working in a US context I conform to the US standard of spelling. Indeed, I am peevishly reminded by nearly every electronic composition tool that my use of colour, amoung and calibre is a failing. Red underlining and brusquely worded pop-ups pile on the calumny. As a working individual in this culture, I will conform to your spellings.

I will not, however, us US spellings here. I leave aside past posts where I may have used the US spelling with mindless acceptance of authority. I now rebel! I will spell with all the valour the Good Queen intended!

So What?

2008-05-10T18:28:00.006-04:00

So what? I have posted nothing in over 3 months. It doesn't mean I have kicked off yet, nor that I love no one but myself and cheese. I've had bigger things to deal with, like my recently declared pogrom on the squirrel population in my back yard (a subject for a future post). Or, perhaps that I had surgery that knocked me on my ever scrawnier ass for two months.

I swear: I love that folks have complained of my sparse posts. Vanity would have hoped the number of complaints were a tad more, shall we say, ample, yet I am diminished by my neglectfulness. I stand abashed.

It has been much more difficult to bounce back from surgery than I imagined. I have a self-image that is somewhere just short of a superhero, and being confined to gentle walking and large doses of "taking it easy" has forced me to reconsider. I might really be human after all. I will bounce back. That is not in question.

My surgeon, Dr. Scott T. Kelley, formerly of the H. Lee Moffitt Cancer Center in Tampa, was the right guy for me. He was the top guy at the top institute in the region, where 10 colon resections are done a week and 10 liver resections are done a month. A tenth those numbers would qualify as a major center for that kind of surgery. Dr. Kelley, surprisingly for a surgeon (no offense intended to my charming niece), was also a nice guy. The kind of guy you would drink a beer with, or enjoy a good wine over a family dinner of pasta. He's a bit of an Italo-phile, so he had Kim at Buongiorno! Our initial appointments with Dr. Kelley convinced us he was the man we could trust to do the right thing.

He scared me a certain points, letting me see under the covers just a bit more than I expected. Frighteningly clear is how much surgery remains an art and not a science. It might even be considered a craft, and I present as evidence our conversations on the surgery: "Well, I'll be able to tell when I get in there. I'll want to feel around and see what I can find before I make the final decision", evoking memories of automotive mechanics and they're winning ways. Or the guy who's going to fix your air conditioning. Except that you're knocked unconscious on the table and have to agree to the work order before you know what they plan to do. You can't tell the surgical team to get they're sorry asses off your property. "I'll fix my own liver at that price."

In the end, I am happy to be alive and in one (slightly curtailed) piece. Dr. Kelley was very pleased with the end product of his craft and declared that I was "no evidence of disease". I was pleased to hear that news as well. I won't go into the recovery phase of the surgery 'cause it was a pus sucking nightmare, but if you'd like a glimpse, don't miss my beautiful wife's Flickr collection.

Good News

2008-02-05T19:39:00.000-05:00

We received great news yesterday. My so-called restaging CT and PET scans came back with very good news. My tumors have been beaten back very significantly. The "hypermetabolism", measured by the PET scan, in my initial scan showed my primary colon tumor and the lesions in my liver very brightly. This means they were actively growing and eating sugars meant for the genuinely good bits of my body. My latest scan shows almost no hypermetabolism. One tiny spot on the liver about 6mm in diameter. This is fantastic news meaning that my tumors are very responsive to the chemo. This should remove any hesitancy on the part of my surgeon to operate (or cut, as the docs call it).

The surgeon's hesitation comes from the fact that, if you remove half of someone's liver and their cancer is not under control, you've simply shortened their life. Tiny lesions on parts of the liver you didn't cut out will then grow and destroy the liver. Livers are important:oddly enough, they keep you alive. The fact that my tumors respond (i.e. die) from the chemo should kill off any residual spots than were not removed.

I'm not one for irrational exuberance (some call me Mr. Negative Man), but this makes me smile. It's not a normal situation, to be excited about the opportunity to have half your liver and a good chunk of colon cut out, but I am. Scares me a bit to have major surgery, but, as I like to say, it sure beats the alternative.

Happy New Year!

2008-01-19T14:50:00.000-05:00

A bit late, but who's checking.

I'm almost 2 weeks out from what we hope to be my last round of chemo for a while. Maybe until April. That would be a great holiday. I've not written for a while for a number of reasons, but mostly the chemo. Chemo slows me down and makes me stupid. And perhaps I'm bored with myself.

To pick up a dirty old cliche, much used and toyed with, I can see light at the end of the tunnel. To even feel that there is a light end to their tunnel is a blessing for any cancer survivor. I see the old guys at the Juice Factory. They've been at chemo for years, just staying alive. And, as those with life threatening illnesses know, every day is a blessing.

We watched "Click" on DVD last night. The movie has some hilarious moments, causing Dillan and Kimi to laugh uncontrollably. Lots of tremendous bawdy humour, but surprisingly, a message of great importance: live every day, family comes first.

To business, my medical status is I hope nearing the middle of my journey. I have just had a new set of body CT and PET scans. Today I am drinking up my iodine contrast for a dedicated liver CT at the Moffit Cancer Center. Moffit is a good center and the staff are, generally speaking good to me. They're ranked #16 by US News and World Report. #1 in Florida. It's cleaner here than most hospitals or clinics I have been to. I like that.

I won't see my surgeon or his nurse this visit, since there is nothing to discuss. He is waiting for the results of all the tests I am going through. At that time, he will make the decision to go ahead with the liver lobectomy and colon resection. He refers to the current tests as "re-staging studies". It seems odd that he would refer to the stage of my cancer, since I am Stage IV, and they don't have any more advanced stages. There is no chance that the Stage of my cancer will be different since any distant metastases put you at a IV, independent of how large your mets are. The real questions are: is the primary tumour in my colon shrinking and are my nasty little mets shrinking from the chemo treatments. I do beleive they are responding, since my CEA counts have dropped to 20 from an initial 90 or so. Also, I have no awareness of the tumour in my colon. It may have been strange phantom contact, but I have had an awareness in my gut that is not there now. It would be wonderful if we were all ready to go.

That brings me to the surgery. To say that I am worried about the surgery is not completely wrong. I look forward to getting through it as a major step to curing my cancer. I'm as impatient as hell to move forward with something other than chemo, which is turning my body into a litany of undesirable side-effects. The surgery is really the peak of my treatment. Chemo is nasty, but passive. The side-effects will go away with time, as folks tell me. Surgery, though, is not passive. They will open up my abdomen with something probably resembling a Mercedes incision:

However, the incision will probably be longer, since they'll be going after colon as well. I'm looking at some pretty spectacular scarring. Not to mention that I'll be getting some chemo post-surgery, and the chemo has made a mess of some of my other scars. My abs were not much to look at before this: no one ever said what a sexy beast I was without a shirt on. Some, in fact, insisted on me putting my shirt back on. Now at least, I will appeal to ladies with scar fetishes.

The liver resection is still an unknown for me. The surgeon has not yet said what his surgical plan will be. I irks me, a tad, to have such a major part of my treatment plan undefined. It is a combination of my emotional neediness and my engineer's desire for a well defined program: I am irked. Kimi says I should be less concerned about it, but holy crap if you look at what they are planning to do, remove a major part of my liver, I would like to have a sense of what is about to be done. Supposedly, they know what is to be done. This is a major center for this kind of surgery, and my boy, Dr. Scott Kelly, MD, is head of Gastro Surgery. If he doesn't yet know, I would have a hard time trusting anyone who had a plan. I guess that is good. I have trust. He isn't about to do this lightly.

To come up from my deep dive into medical grumbling, my general well-being is good. I am tired, the chemo has taken alot of my energy. However, I feel good. I've been working most days, except when I have tests or chemo. I've more or less stopped losing weight, which has been a challenge since food tastes like poop. After 25 pounds, it's time to stop. I could list my side effects, but some of them are unsavory. Unfit to print. The nice thing is I still look handsome. I look in the mirror, and I say to myself, or anyone who will listen, "I'm a handsome guy".

Radio Silence

2007-12-02T22:27:00.000-05:00

It's hard to believe that I have not posted for nearly two weeks. My last post was before my last round of chemo. My next round starts this Wednesday.

The silence can be attributed to both good things and bad. My last round of chemo started off fine. I had my session at the office, four hours of poison pumped into my bloodstream, but I felt good. Perhaps too good. About the same time I was handling a crisis with one of our largest clients, Intel. They had a media campaign, TV, millions of advertising dollars all pointing people to a website that, sad to say, was having intermittent failures. I'm on my chemo pump, on the phone, trying to get our people, who are leaving on Thanksgiving vacation, to talk to Intel's people, who are leaving on Thanksgiving vacation. I'm a tad stressed, and in the end, we could not solve the problem. Intel had to go with plan B. It was good to be working. Good to feel I could contribute.

The bad part begins as I'm trying to get to bed, I feel a bit of a headache. Like a fever headache. I take my temperature with the new "high end" B&D digital oral thermometer (reads in under 10 seconds). 100.2F; at 100.5F we've been instructed to get in touch with the doctor. Too bad for us, it is 10:30PM the night before Thanksgiving, and just like my Intel problem, no one seems to be available. 100.4. I'm trying to contact the Home Visit nurses who have 24 hour support. I'm on hold for 20 minutes. 100.5. Kimberly, my cherished wife, is now beginning to show signs of imminent melting. I tell her, "Honey, they're just going to send us to the ER, so let's go now." No argument. I don't change out of my pajamas. I put on warm socks and gloves (cold neuropathy), pack up my medical records and a pillow, and we're off.

I hate the ER. It sucks. Of all the waiting rooms, it is the worst. You feel urgency. You or your loved ones are hurting or ill, and you're surrounded by people who are either coughing up something terribly contagious and unpleasant. But the staff seems to feel all the urgency of a Italian Busdriver on a stike day. Kimi has to remind the staff three times that a chemo patient with a fever is an acute condition. Could be life threatening. After 30 minutes, we are seen and put in a bed. Blood tests, Xrays, IV rehydration. I top out a 100.9. IV antibiotics, levaquin. At 3AM, Thanksgiving Day, I get the news that all is well enough. It's probably a virus. I'm on oral levaquin for another 10 days, but I just have to keep track of things.

It's a relief that I'm not admitted, that everyone can be together for dinner. But, I think I've been tired since then.

Probes

2007-11-20T00:10:00.000-05:00

Today's probing I hope to be the last for some time. It's not only that the preparation for a good probing is miserable, in that you can't eat, and you can only drink things that don't make you happy. It's not only that you have to drink vile fluids that cause your gastric system to rebel, ejecting every living thing from your gut. It's not only that it just takes up so much of your mental energy for days before and day of that you can't be pleasant to be around. It's mostly that just you'd rather not have one more opportunity for someone to deliver bad news. The latest round of tests is supposed to be filling in the details. Getting a roadmap in place for my surgeon. I'll spare you the details, but the reasoning for the tests makes sense. In the end, I couldn't say "Avast! You've probed me for the last time!" Although, my insurance company would probably have approved.

In the end (so to speak), I tried to be charming: I joked with big Radu, the Easter Island faced Romanian, who seemed insanely happy to be working as an RN, anywhere other than Romania. I critiqued, positively, the sterile technique of the Triathalon running, Lance Armstrong loving nurse who "accessed my port". (I'm very proprietary about my port, and fussy about who gets near it; it's a trust thing, really.) I even tried to cheer up the recovery nurse before I was completely awake. Kim tell's me I was gesturing drunkenly and grunting out some of the funniest material I've ever delivered in a recovery room.

40 minutes later I was sipping tea and enjoying a nice felafel at a Persian restaurant down the road, another miracle of modern medicine.

Say cheese!

2007-11-15T18:17:00.000-05:00

"Mr Polpetto, You Ugly Stinker": Two Artists Rendition's

2007-11-15T17:37:00.000-05:00

My 10 year old son, Dillan, is a genius, and when requested to draw Mr. Polpetto, he gave us this:

My Oncologist, Dr Kunta, is pretty sharp, when requested to do the same, he was only able to come up with:

Looks more like a snake, but whatever... Mr Doctor Man!

Waiting

2007-11-14T15:40:00.000-05:00

Despising the waiting room is a luxury. I am blessed to be in a position to receive among the best health care available in the world, and when I am cured and laughing in a Paris cafe 10 years from now, I'll still weep with gratitude, but with the rest of you, I'm trapped in the present.

Waiting as a Greek God: Torments those who lack patience. His temple is built of chewed fingernails and empty coffee cups.

Waiting as Sociology: The waiting learn each other with odd glances. Casual conversations toy with relating their intimate thoughts.

Waiting as RoadRage: The waiting learn anger as others cut them off in the order of being called.

Waiting as Cognitive Science: The waiting learn the present. Why does time pass more slowly?

Waiting as Zen Koan: The waiting learn the Buddha. They kill him.

Waiting as Ecstasy: The waiting cry together, share love of humanity, tap the well of holy experience. The staff are pissed, 'cause no one comes when called as individual names are meaningless.

Och Aye!

2007-11-12T21:05:00.001-05:00

Whoowee! Today I feel that I am climbing out of a 4 day hangover. If only I'd had the orgiastic bender to precede it. Sure, it's always fun to see Dr. Kunta, quite a laugh, really. Almost makes the trip worthwhile. But no, no crazy wall-eyed drunken joyful moments to think back on, perhaps be embarrassed by.

Out of consideration of my much abused liver, I have not had a drink in almost two weeks. It seems like the least I can do, given that chemo drugs and cancerous lesions are making their own little party in hepatic tissue. The last time I gave up my customary drink, a couple of years ago for Lent, my brain took on a life of its own. 40 days without anesthetic gave it a lift like a rocket. Lord knows what I could do, had I never had a drink. At the time, I could attend a conference call with 6 people on the other end. A week later I could still remember all their names and job functions. My memory was sharp. My thoughts were clear. In the end, the lovely malt called to me, and back to my nominal numbness I returned.

From this, you can see the historical pattern developing. Drink is an international conspiracy to keep the Scotsman down. Without drink, the Scot becomes a superman, the Nietzchean UberMench. During the 19th century, the Scots were growing in influence and power administering the British Empire, controlling the tobacco trade. Then, the man dropped a bottle on the beaches of Camusdarrach and called it Scotch. Since then, the steady decline. Today, the Scot is undistinguished, except for Gordon Brown and Mike Meyers, living a life of quiet mediocrity, enjoying the happy bubble of wee scotch and soda. But, look out! James R. Thomson, from County Huntington, has gone dry!

Hungover from the Juice

2007-11-08T09:04:00.000-05:00

I feel good. I expected to feel like I had been hit by a truck, but I only feel like I need a bit more sleep. I think this is excellent news, if it keeps up. I want to be able to keep active and energetic during my treatment and not lie around moaning. Not that I don't like to moan. I like to moan. I just prefer to be happy and giggle.

The Juice Factory

2007-11-07T19:36:00.000-05:00

The first day of Chemotherapy is little like the first day of kindergarten. The other kids already know what's going on, and they size you up as you walk in the room. A couple of people smile at me. Then I realize, most of the other people are almost unconscious. Napping seems to be the favorite pastime. The room is a little small: the patients are a crowded, as is the staff. They're looking for more space, but the move is months away. No fancy individual TVs, no side tables to put your water bottle on, but it's a comfortable. The staff are happy. Dr. Kunta puts in the occasional appearance for comic relief.

Step 1. Plug in the port.

I'm a bit nuts about sanitation, generally speaking. I've a genius for picking out germ transmission vectors. (Many of you have had the pleasure of hearing my recent favorite, the burger restaurant ketchup bottle. Yum, yum, stuffing burger in my mouth with my nice clean hands, drooling on my thumbs, spitting on my fingers. Oooh, I need some more ketchup for my delicious fries. I'll take my drooly fingers and pick up the Heinz. 'Tis then that I envision the 25 previous drooling germy incubators who picked it up before me. When was the last time you saw someone wipe down the ketchup.) Knowing, then, who I am, you should take the rest of this with grain or two of salt, but pick the shaker up with a napkin.

The cancer patient's port is a walnut sized reservoir connected to a central line, dumping drugs almost directly into the heart. The heart is a bad place to introduce infectious materials to your body. Functionally speaking, the major purpose of my largest organ, my skin, has to be to brokering these introductions, keeping crap out. By-passing the doorman, opening up a path directly to the heart makes me queasy. The nurse who gave us training on the port told us to insist that any practitioner touching my port be "port certified". This appeals to the mildly filtho-phobic.

At our first meeting, I brought up "certification" with my Oncology Nurse, Laura. She might scatter her thoughts a bit, but her warmth is unmistakable. I'm a person to her. I may also intimidate a bit. She mistakes "Port Certified" for "Board Certified". Before we get started today, she shows me a printout of her marks. They seem fine, but now I'm embarrassed, 'cause I don't care to know her marks. I just want to know she's not going to try to kill me.

She accesses the port like the professional I expect. I keep an eye on her "sterile" technique. She is pretty good. I like her better than the other nurse, who touches drawers and table tops with gloves that are supposed to be kept clean.

Step 2. Draw blood out of the port.

I'm healthy as a horse. My blood is perfect. If it weren't for the cancer thing...

Step 3. Hors D'oeuvres

Anti nausea, anti histamines, steroids...

Step 4. Main course

Oxaliplatin and Leucovorin.

Step 5. Salad course.

Avastin

Step 6. Out with the port.

So far, I've had no symptoms of any consequence. I feel perfectly normal except for carrying around a 4 pound pump for the 5FU drugs. Tomorrow will be the big day for side effects, if I'm going to get them.

Stay tuned...

Mr. Polpetto Prepare To Die!

2007-11-07T09:13:00.000-05:00

You've had your fun, now it's time to go.

And They're Off!

2007-11-02T13:03:00.000-04:00

I have my appointment scheduled to start chemo for Wednesday of next week! I wanted Monday, but they were booked. Two days is not a big deal, they tell me, and no amount of whining was going to get me in on Monday. Can't complain, really, but I was ready to start the marathon. Itchy to run. It is exciting, but it feels great to be ready to have some kind of treatment.

The Last Word

2007-10-31T20:51:00.000-04:00

The H. Lee Moffitt Cancer Center is a good place.

The drive to Tampa passed quickly Kim drove, listening to the comedy channel on XM. Some of it was funny. Distracted me from time to time as I clicked away on the laptop. Seventy miles passes quickly. Moffitt is located on the University of South Florida Campus. Kim gets to reminisce about her time here. We pull up to the free valet parking, one of the comforting perks paid for by expensive insurance. I love it, and I know I will love it more when I am tired and beaten up by chemo, but I feel guilty.

It's Halloween and lot's of the staff are dressed up. The admissions clerk is in authentic US Army fatigues. A little disturbing. A pleasant looking nurse is dressed in 50's bobby socks. Quick service here, though. The triage nurse is calling for us before we finish checking in. I'm still tense, as my blood pressure pounds out at 20 points more that I usually draw. My forms are all filled out, with nothing to do but wait.

A longer wait to actually get to an exam room. Another wait in the exam room. Finally, a handsome young surgeon comes in. (A fellow, it turns out. I don't really know what that means.) He's Italian, gentle and soft spoken. His poise and intelligence make me feel good. Unexpectedly, he is talking about the possibility of colon surgery before chemo then liver surgery. The unanimous opinion has been chemo, then surgery, colon and liver. This is a loop. Unexpected. I don't need to look at Kim. She'll be right with me. I'm not emotionally disturbed, not yet, but mind racing about delays in starting chemo. Complications. More planning. More tests. I'm not against the idea. We had some concerns about potential hemorrhage. This would solve it, but it might delay chemo for nearly two months. We start to push him with lots of questions. We're pretty good at it now. He's starting to realize he is in over his head. He goes for Dr. Kelley, his boss.

Dr. Kelley spends less than half an hour with us, but he says the right things. He makes us feel confident that his decisions will be well considered. He wants to do a few more tests, but he is not as certain as his fellow. He has good things to say about Dr. Kunta.

More on this tomorrow.

The Green Air

2007-10-31T09:21:00.000-04:00

The outside edge of Hurricane Noel is sending us some interesting weather, but nothing to slow us down. I do love the rain. I would hate to live in the desert. Dry air is almost as bad as cold air. It is hostile. The cold will kill you. So will the dry desert.

The humid air of Florida nourishes. Plants grow here with joy and excess, an orgy of green life, bounding, climbing over each other up to the sun, stumbling, falling back and starting again. At times a plant may be overcome by its neighbors, but there is no malice, no struggle for dominance, just a big happy clod, incidentally squishing a smaller pal.

Where others find crushing heat, my green brothers and I drink in succulent air. This is a place to live and prosper.

Smooth Talkers

2007-10-29T17:53:00.000-04:00

My stress level is high enough to taste. And supposedly smell, since the lovely Mrs. Thomson says my breath reeks of the monkey section at the zoo. Normally, I'd have a couple of pints (or six) and I'd deliver to all the charming boy we've come to love, breath no better, but sporting a smile. Contrarily, another session with a pair of chaps in disheveled, albeit clean, labcoats reminds me that I am gradually giving up control of my body to the medical industry. For what must be the 10th time this month, I fill out questionaire on my medical history, my bowel movements, and my drinking habits. Unusually, there is a first interview by a young oncology "fellow", who quite exhausts the questions by asking them again, to be sure I am not fibbing. I admit to joking with a receptionist that I lied at least once on every page. Who knew they would communicate? So, the part about my drinking habits come up again. The nice Indian lad with the unpronounceable name looks up in surprise from my diligently completed history, "How many beers do you drink?" "Three." "A week?" Now I get the look from Mrs. Thomson. "A day." She's thinking, "you know you drink more than that". Traitor.

Dr. Kayaleh enters with a flourish and a salute. He's light-hearted, a bit awkward, trips on the exam table. I expect a Mid-Eastern accent, but he is eloquent, well educated, East Coast accent. We sit in the comfy chairs; he sits arms crossed up on the exam table. He is well groomed, well dressed. His young protoge stands, awkward, silent. Kayaleh speaks as pleasantly as can be expected when you are talking about cancer. In the end, he gives us a thin, conservative version of what Dr. Kunta and Dr. Mancuso have already said. He is not uplifting, but we are reassured that we are not off on the wrong path.

We've been at this for a month now, and I am ready to begin some kind of treatment. My stress level can only get better if I don't have to keep telling people about my drinking.

Decision Points

2007-10-28T09:04:00.000-04:00

This week will be pivotal. If all goes according to plan, I will be on chemo by Friday. If the doctors at MD Anderson and Moffitt propose radically different treatment plans than my homey, Dr Kunta of the lowly Cancer Centers of Florida, we'll be have to reconsider everything.

From what we have read, Dr. Kunta's recommendation of chemo then surgery is the current standard of practice. Logically, therefore, it can't be the most advanced treatment available. In a way, it will be good news if the second opinions offer a more advanced option. It will send us for a loop. It will require a leap of trust to go with a new plan. They will be holding out a giant bowl of delicious hope, and we'll have have a hard time saying no.

Labcoats

2007-10-20T15:50:00.000-04:00

I was mistaken for a doctor yesterday, as I contemplated doing a "Lance Armstrong", refusing to sit in a wheelchair after the my latest procedure. Hospitals use the term "ambulatory surgery", which should have something to do with a patient who walks in and ambles out, but that's not how they see it. You walk in and they insist on wheeling you out in a chair. In his autobiography (It's Not About the Bike), Lance recounts stories of his own pluckiness, telling the poor chair wheelers to go to hell, 'cause in Texas nobody rides a chair, and other macho acts of defiance. I contemplate my own rebellions but plan for a different target. I'll cooperate with the poor chair pushing underclass, and take my complaints to a higher authority: the almighty boys in labcoats. In the end, I think we're escorted out of the Ambulatory Surgery Center in wheelchairs so we don't frighten the poor bastards coming into the Center, looking like the walking wounded and passing out in heaps, suing over substandard departure procedures. The message being communicated is "see how well we treat you now that your surgery is done, you can only imagine how well we treated you in the O.R."

So, I was mistaken for a doctor by the woman who came to wheel me out of the hospital after I had my Bard Power Port installed. I was up and ready to get out of there as quickly as I could, not out of bravado, but because of a rule I adopted 20 or more years ago. An author was being interviewed on his latest book, a critique of the modern hospital. He said, "Think of a hospital like a war zone. Stay out of it if you can, and if, through misfortune you end up in one, get out as quickly as you can". An old rule: Stay out, or get out fast. I was eying the exits, prepared for my breakout, despite the disapproving looks from Miss Kim, when finally a woman with a chair shows up. I say a few words, perhaps a bit too familiar "You looking for a fare?" All I got was a confused look as she went on by. I followed her to my former hospital bed, nervous I missing my lift. "Mr. Thomson?" That's me. "Oh, I'm sorry: I thought you were the doctor." I'm wearing an off white jacket.

The white lab coat is still the symbol of authority in medicine. Sure, my oncologist, Dr. Kunta is presenting a more laid back image, he wears a dress shirt and tie. But Dr. Mancuso, my surgeon, wears a lab coat. I've mentioned this before, so you know I am obsessing, but it's like this: his labcoat is not clean. The first time we met him, there was a little grubbiness around the pen pocket, but nothing else I noticed. The second time I met him, there were two dark little spots on the labcoat, in addition to the grubby area by the pen pocket. I don't mean to be petty, but we're talking about the symbol of the man's authority. I acknowledge that the man is colo-rectal surgeon and he spends a lot of time putting things up people's butts and accidents can happen. I acknowledge that I too may from time to time have worn something which was not immaculately clean, but if I was a surgeon, I think I would pay attention to that little detail.

Do the Wave

2007-10-17T21:37:00.001-04:00

For the past 24 hours, the Thomsons have been trying a to propagate a giant wave of relief as far as we can. The news from Dr. Kunta, my Oncologist, is better than any of the maddening, frightening, terrifying thoughts we had in our minds. Despite a good one liner I heard recently, colon cancer is nothing to joke about.

Kimi and I spent this past weekend propping each other (and family members) up with the weakest of timbers. Committing to strength I'm sure neither of us knew where we would summon, we pledged optimism, support, clear goals and love to ourselves and those around us. I felt resolute, and I know Kim would bear anything to see me through this. We had had the most serious diagnosis of our lives from a man who was both unprepared and perhaps ill-equipped to deliver it. No details of a treatment plan. Only the vaguest of prognoses. Nothing to take home other than doubt and unknown consequences.

By Monday I was bottoming out, due both to my feverish mental teeth grinding and the carb restricted diet for my PET scan. Anyone who knows my dietary proclivities will tell you I get wicked cranky if I don't eat well. Worse still Tuesday morning after fasting the last 12 hours to my scan. I napped, a radioactive glow inside the PET machine, unconsciously, invisibly seeping positrons to measure the progress of my disease. Afterwards, too stressed to eat a scone at a bookstore and too late for an sausage egg McMuffin (11:05), I drove home in a daze. I ate two pieces of cold pizza from the fridge. To chase it down, a soy latte and 3/4 of a dark chocolate Toblerone. This got my energy back up in a hurry! The headache was worth it.

At 2:45, my darling wife meets me at Dr. Kunta's office, and she looks like she could use the rest of my choco bar. She doesn't eat when upset. I am all business, my LiveStrong Survivorship Notebook on my lap, reviewing notes, taking new ones from the a new books I just acquired. The only concession I make to her comfort is to sit close to the water dispenser because she mentioned she is thirsty, barely noticing it means our chairs are separated and she can't hold my hand. Shortly, the nurse calls us in. "James?". They all call me James. I give up trying to tell people I go by Ross. I remember to hand off my Notebook before getting weighed. Nobody wants unexplained weight loss or gain. We don't wait long for Dr. Kunta.

He comes in, less of a whirlwind than our first appointment, but still intense, listening to us, making sincere eye contact. Part of his art is reading the stress levels of his patients, watching them, feeling them. I don't feel his attention is off us for a second, rarely looking at notes, rarely deviating from his level gaze at either me or Kim. Mostly me. We get down to business right away, and he talks about the next steps, we'll do the chemo first. Yes the liver changes things. I challenge him, I'm angry and I want to take charge. I can see he realizes this is a different game than we played the first round. I start throw out my recently amassed, amateur knowledge of his field, "So we'll do the FOLFOX treatment?" He's not offended, nor dismissive, perhaps indulgent, but kind. "Yes, exactly! FOLFOX6, FOLFOX plus Avastin." It's the standard treatment, state of the art, likely what we'll be recommended anywhere. Anything else is an invitation to malpractice. We talk about trials, what's required, what's a good idea. I'm getting a lot off my chest. Kimi takes him on for even suggesting that we should lay off the internet research: "You've got two people with advanced degrees here. We're gonna read!". No, no, of course, but soon I understand. I don't know when it starts, but in a few seconds we are talking about the odds, chances of cure. We've been beaten down by the indifferent lack of information from the surgeon, the incomplete information on the internet, the horribly out of date information in popular books. Better than 50%. Maybe 60 or 70, he adds. Although, I see the parentheses around these last two, I see these numbers in front of me, and almost feel them. So joyous, I can still envision them, solid against Dr. Kunta's arm, floating suspended, timeless. I'm still in business mode, so I don't stop, but the numbers are there, solid, steely gray, resolute. Dr. Kunta spends nearly an hour and half with us. He'll be late for meeting his wife, and I didn't feel a hint of impatience. It will take a lot for me to switch to another doctor.

We're not out of the woods, we don't even know what kind of woods we're in, and we know we will find out way out. We don't have to be supermen to survive this. We'll be heroes, and we all have a hero in us.

Telling People

2007-10-16T05:41:00.000-04:00

I had a hard time telling people about the extent of my cancer yesterday. It is more serious than we hoped, Stage IV with all that this implies. Still, no reason to freak out. However, I had to stop before I could start telling someone because I became so emotional. I had to leave their office before I broke down weeping. I think I was mentally unprepared to talk about it. I was caught off-guard by a casual, "how are you doing?". This person was closer to me than most people at my office. I felt it was time respond with more than just my usual, "I've had worse days", 'cause lately that is not such a sure bet. It was not the time. I don't have a delivery ready for this new more intense explanation. I couldn't find a path where I could rise above my own fears.

So, new rule: No more impromptu disclosures of my condition. If the person doesn't know, and I didn't initiate the conversation with the intention of letting them know, it's not time to tell them. There is plenty of time to talk to them later. I'll get more comfortable with the new delivery and get a few punchlines together.

Who Me?

2007-10-16T05:34:00.000-04:00

I'm having these moments of unreality, like a deja-vu experience, where I'm sitting in a normal situation, working, talking and I have completely forgotten about my cancer. I'm just Ross doing the things Ross does. Then I become aware that someone told me I'm carrying around a cancer. It is beyond unreal, it just doesn't fit with with where I am, with what I'm thinking. Another form of denial I guess.

PET Lovers

2007-10-15T07:16:00.000-04:00

Tomorrow is my PET scan. I get to spend the next 24 hours eating the "fatkins" diet. Low to no carbs. Steak for lunch?

What's Next?

2007-10-13T23:19:00.000-04:00

Can't sleep. Wondering what's next.

Kim thinks my head is a funny shape, which does not bode well for losing my hair in a few weeks. Peppy took my picture for the "before" shot. By the way, this is supposed to be humorous, not depressing.

Laura Rhodes has offered to get us in touch with folks at MD Anderson. Second opinions...

Starving

2007-10-12T18:19:00.000-04:00

So tonight, Kim is researching my cancer on the internet.

"So what are you making me for dinner tonight?" Surely, it's her turn to cook and I'm having an overwhelming need to be pampered.

"What?"

"Chinese food, something crispy and fried."

"What?!"

"You're going to cure my cancer, but I'm going to die of starvation."

"You suck."

Crap. She's in the kitchen cutting up vegetables. Healthy food, no yummy garbage for me tonight.

Getting Started

2007-10-12T17:45:00.001-04:00

When we thought this was going to be easy, and no one would have to worry more than a bit, I dropped the idea of blogging as a self indulgence, a slightly "me too" kind of thing. But now, now that it's not going to be easy, and I, at least, am a little worried, I think we'll all feel better if there's some way for me to talk with blubbing into the telephone.

There's an irony to hope, in that it resembles denial. You have to exclude from your mind all those things that are negative. You have to deny them the mental attention they feed on and drive your focus to the positive thing, the thing you want, the thing you hope for.

We've been through a couple of rounds of hope in the past month.

There's the hope that everyone lives with: it can't be me, I won't get sick. Then I awake from my routine colonoscopy with a polite but grim Dr. Pothamsetty quietly telling us, "We found a mass in your colon. And some polyps. We have taken a biopsy and we will know more by Tuesday." It is me. I guess I can get sick.

There's the hope that my tumor will be benign. A simple surgery and all is fine. Heck, the worst part is the wretched purge of prep'ing my bowels to be nice clean for the surgery. Tuesday. Call #1. "I'm sorry sir, we don't have the results yet." "Nicole, I would really appreciate it if you could call the diagnostic office and get the results for me today. Dr. Pothamsetty was very clear that I would have results by Tuesday." "Okay sir, I will call today and get your results." "Thank you so much, Nicole." Tuesday. Call #2 "Hi Nicole, any results yet?" "No sir, I have not called yet." "Nicole, I would really appreciate it if you could help me out here. I'm sure you understand that I am a little nervous about this." "Okay sir, I will call for you in a few moments." Tuesday. Call #3 "Hi Nicole, it's Ross Thomson again." "Okay, sir. I will call for you immediately." Tuesday. Call #4 "Mr. Thomson? This is Dr. Pothamsetty." It's not benign. It's malignant. He doesn't use the word cancer. I am sick. I want to deny deny deny.

There's the hope that your cancer will be Stage I. A simple contained tumor, easily excised through the a simple bowel resection. That's what my mother had. Ton's of people have a simple resection and they are good as new. Every one I talk to has a delicious story of another survivor. "Yup, my Dad had it. Had the surgery and he has been great ever since. Never had chemo." Today was my consultation with the surgeon. Dr. Mancuso, a nice Long Island boy, who comes with a fine recommendation from both my Gastroenterologist (Dr. Pothamsetty) and my Oncologist (Dr. Kunta). "If I was going to have surgery on my colon, I would want him." Well, I'm going to have surgery on my colon. I, too, want him.

So, to get back to the hope. The Dr. Mancuso meeting was supposed to be "We'll schedule you for next Tuesday and and we'll have you home on Wednesday afternoon." It didn't start that way. We waited briefly in his office, nice desk, nice furniture and package of Wasa Extra Fiber Crisps. "How are you doing?" He's in a labcoat. It could be cleaner. "Oh, pretty good, all things considered." "I'm sorry to hear about your diagnosis." "Not as sorry as me." I launch into a high speed rant "laparoscopy this", "medical records that". He looks awkward. Kim shushes me, "Let him speak." He's blunt. "The CT scan showed suspect hepatic lesions in your liver. Metastatic Disease." This is not the thing you want to hear from you surgeon, or your friends, or anyone else. You don't even want to read it about someone else because of the sick feeling and cold rush descending from your chest through your bowels. This is a surprise. The surgeon is not supposed to be the one to tell us. Dr. Kunta, the Oncologist is the guy to break the bad news. He has a sense of humor. He does it all the time. Dr. Mancuso is not that guy. He knows it. We know it. Lots more details are discussed, but it's like trying to focus through a dirty window. "You'll need chemo before we can operate. It all depends on how the cancer responds. It will be major surgery when we do it." There's no denying this. Even though I am holding tight to my hope, I feel foolish. Embarrassed, naive enough to think this would not be me.

We've risen to a new level of hope now. The chemo will work. The nausea drugs will make it easy. I'll need naps, which I love anyway. I'll get second opinions.

The liver surgery bugs me. It will cut into the pleasure of drink, perhaps. The chemo may rob me of the pleasures of food for a few weeks. But, life is good. The best of all. I want more of it.