Mr. & Mrs. Bartley's Burger Cottage

The best burgers I have experienced. I don't know their secret.
Also, frappes Bartley's Burgers Website

George Gershwin - Summertime

Summertime, And the livin' is easy Fish are jumpin' And the cotton is high Your daddy's rich And your mamma's good lookin' So hush little baby Don't you cry One of these mornings You're going to rise up singing Then you'll spread your wings And you'll fly to the sky But till that morning There's a'nothing can harm you With daddy and mamma standing by Summertime, And the livin' is easy Fish are jumpin' And the cotton is high Your daddy's rich And your mamma's good lookin' So hush little baby Don't you cry

Winter Life After Chemo

I was a little worried about my first winter after chemo. With the lingering neuropathy in my hands and feet, I was not sure if I could do my favorite winter pastime, speedskating on ice. The past few days have been quite cold for late November with daily high temperature just above the freezing point. This is about 15F below the normal high and more typical for January - so it's a good test. I walked to the MIT ice rink, laced up my skates, and skated for about two hours. My feet were a bit achey but not too bad. The long walks and work on the rowing machine seem to be paying off - my legs felt OK. Balance drills are helping with overall stability. The colostomy does not interfere with skating.

My main issue right now is some kind of sleepiness. On the ice the sleepiness disappears, but when things are quiet, my eyes begin to close. I have a hard time focussing on things - coffee helps, Advil helps.

Good MRI Results

To my concerned neighbors, friends and caregivers,

I just met with my MGH oncologist to discuss the results of my latest post-chemo MRI study. A CT scan two weeks ago showed some anomalies in my liver that could have been metastatic cancer but were not typical of metastasis. To confirm this, an abdominal MRI study was performed on Wednesday night. The radiologist interprets the objects as likely cycts and not cancer. This is great news. Even though I was prepared for the worst, bad news would mean a completely different pattern of therapy (more chemo, surgery, etc. ) and a much lower chance of survival. Happy as I am about these results, I would never declare myself cured at this early stage. The next few years are ones of intense monitoring and recurrence is possible. As with many like me, the memories are fresh and we are traumatized. For some, me certainly, the fear will never fade. The end of chemo is not the end of fear and anxiety.

Here is a link which explains some of the emotions that can occur after cancer treatment.
http://www.mayoclinic.com/health/cancer-survivor/CA00071

There is a tendency to not care about the body which has already let you down. Earlier habits of exercise, healthy eating, weight control, self care, etc. need to be reprogrammed. It's easy to fall into a self-destructive pattern and I don't see this as irrational at all. It's a choice and a daily struggle. After all, why die of cancer when you can die of something more fun like vodka poisoning. :-) or skydiving .

--Dave

Colonoscopy Through Stoma

My gastro doc uses the Half-lytely bowel prep. It's two liters (1/2 gallon) of water containing an osmotic laxative. It's designed not to dehydrate the user nor to add fluid to the body. So you can drink a gallon without (usually) any hydration issues. The effect is called "colloid osmotic pressure" or Donnan pressure after the famous British chemist Frederick Donnan, FRS.

Yesterday morning, I filled the plastic jug with tap water and mixed it until all the powder had dissolved. I added the lemon-lime flavor packet. The prep kit comes with two bisacodyl tablets (stimulant laxative) which I did not use since I have IBS. My gut needs no prompting to get moving.

I switched to a drainable bag which is absolutely needed since the liquid exits quickly and without warning within an hour or so. I drank one glass of prep every 15 minutes - about 8 glasses total. My bag filled up about ten times - each about 200ml, so the total out is a close match to total in. Ain't science wonderful. After about four hours things calmed down and the bag stayed empty.

This morning I had the colonoscopy. I brought some appliances with me. I was invited to change into the obligatory patient garb. I lay face up and a nurse placed an IV line into a hand vein and began a saline drip. I was wheeled to the endoscopy room where I met my red-headed lady gastro and the anesthesia nurse. The happy juice cocktail was Versed (midalozam) & Demerol (pethidine). Versed is short-acting relaxer and sedative and Demerol is a opioid pain med which sedates. I am pretty sensitive to this combo and it turns me off very well - no memory at all of the procedure - amnesia is common with the cocktail.

I woke up to an offer of juice and cookies. I was still under the influence of the happy juice. The Versed wears off quickly but Demerol wears off over several hours - I can still feel it. Whoopie.

I found that they did not remove the flange - only the bag of my 2-piece. It's convenient for the staff but there's a small chance they could miss something by leaving the flange on. A nurse told me that some docs work right through the bag. I think something could be missed that way as well. Overall, it was an easy and painless procedure.

The End of the Beginning

Winston Churchill:

"The Germans have received back again that measure of fire and steel which they have so often meted out to others. Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

—Lord Mayor's Luncheon, Mansion House following the victory at El Alameinin North Africa, London, 10 November 1942

Cycle Eleven - Day 3

Wow! Cycle 11 - One more to go. Over the past six months, chemo had become a bit routine. One thing that I don't see as routine is Ellen's great support - she has been with me for all except one infusion (Lou subbed once) - now that consistency - fantastic. It seems like a hobby. And the bag thing is not just a hobby, it's a profession. I am a bag monitor. The fact that this all sucks is self evident. At least today is "disconnect" day and I won't be dragging the damn pump around the house. One more shot of "neut boost" in prep for last cycle. Wo' - last cycle no mo' chemo assuming I'm "cured". Otherwise - it gonna be super nasty. I am now wearing rubber wristbands - blue (MGH Cancer Center), purple (Power Port) and I guess I need to get the LiveStrong yellow band just for completeness. Rubber band for luck - we all need luck in life. I need a bunch of it. Don't forget George Carlin and Art Buchwald - comedic to the end. Laughing while dying - quite a skill. Sorry to bring the reader down. On an up-beat note, thanks to Suzi for the choco-chip cookies - mmmm!

Cycle Ten - Day 5

Hello all. The heat is on for Cycle 10. Hot weather I mean. Thankfully I'm not on oxaliplatin for the last four cycles (9 through 12). Having been on oxaliplatin in the winter, I know how bad the cold beverage thing can be. In winter time warm bevs are OK. But it's hard to go through a summer without a cold beverage with at least a little ice or maybe an ice cream or two. From my experience, I don't think the oxali users can do this. Very tough. Of course, we don't feel the effect of the sub 50 degree air on the hands, feet, face and throat. - yuk. Chemo is just bad - any time of the year.

For me now, it's mostly about staying hydrated. I do stagger a bit - other patients also report loss of balance. Mentally, the good weather is bad (and the bad weather is also bad). Feel like I'm losing out on summer activities. It's hard to be normal when you are are not. So you try to act normal - I think that's about the best one can do. Even when acting normal - you know it's act. e.g. when some asks - how's it going? what are you going to say - oh, I'm doing great - that would be real acting - so I tend to say "hanging in there" or "not toooo bad". These responses are somewhat more accurate. I am certainly "hanging" about right now.

Take care.

Cycle Nine - Day 1

Hello y'all, Greetings to PR/B readers. :-)

Good discussion with my onc Dr. Z. Good guy. One has to be ready for surprises in the onc biz - I am getting used to this and made a few mental predictions since my last chemo. I was on the money. The known options were, 1. stop after eight cycles , 2. continue until 12 - and the new one - 3. dump the oxaliplatin and continue until twelve cycles with the old standby 5-FU + folinic acid - acronymically speaking - from FOLFOX-6 to FOLF (version unknown). FOLF was the "old" chemo that did pretty good - no data on that old study - (chemo+surg+rad) vs (surg. + rad + no other chemo as far as I know). Dr. Z said it would take at least an hour to explain all the tradeoffs and studies on dosing FOLF.

So, I went in with the Super88 model also known as the SuperBaBa model since ba is eight in Mandarin Chinese. Ba is a lucky number in Chinese tradition. We got a laugh out of the BaBa model.

Well, I am always one for compromise - Full Monty vs. 70% Monty vs. No Monty. I like to keep my sexy Calvin Klein black underpants on and so I am now on 70% Monty as I write. So now I'm on cycle nine - maybe it is the Super BaBa model after all.

I walked from MGH to home due a fire on the red line and in the rain. Lots of people where doing the same - some walked from South Station to Harvard Square. Umbrellas were selling well. The rain was warm and I rather enjoyed getting soaked. Of course, the sun came out as soon as the umbrellas sold out - one of the few sure things in life (the umbrella guys have some connection to the higher powers). :-)

Cycle Eight - Day 2

Hi y'all. Well, it's cycle 8. I can't believe it - four months ago I was pretty sure I would not get here. Thanks to Lou, Ellen's hubby, for escorting me to chemo and supporting me. Anyway, to take the load off them - I will likely be looking for the other potential escorts. I do have more people in Beantown to shock with the news.

But one thing I feel completely correct about - this ain't life - it's existence, survival and battle. My equanimity is severely strained - perhaps gone. This brings up a phrase a lawyer (L.B.) of Choate, Hall & Stewart in Boston once used in greetings - "How goes the battle?" Old memories flood back. Somehow I associate this with the runner (and Boston Marathon winner) Joanie Benoit Samuelson through a link to her husband Scott who I think was a friend of a hockey buddy, and professional photographer, P. Lincoln C. aka Linc. DP and I met both of them after a she won a 10k in Boston. Small lady, strong legs.

Well, onto technical issues. My oncologist, Dr. Z, thinks I have reached 90% of final curative probability compared to the twelve, yes 12 cycle, protocol. In the spirit of McD oncology, I now have to decide whether to hit myself four more times or a subset of that. It's a real tough decision - increasing the probability of cure vs. increasing the probability of permanent damage - this is a heavy-weight decision. So we are going cycle-by-cycle with the same formula (dose and neut boost).

The warmer weather helps physically. But is has mixed result mentally. I see more people having fun - running, rowing, skating, biking - and I am hooked up to a chemo pump. Feels like I am missing the fun. Since life is finite - and chemo ain't life - the lost time can never be reclaimed - the calculus of long term chemo is more suspect. In that vein, they are giving chemo for longer periods or for "life" - the breast cancer people are far ahead - they give chemo for life - but it must be pretty low on side effects. Dr. Z. , MD & Ph.D. , is organizing a study of chemo , for colon cancer patients, lasting for four years! Wow! and yuck! :-)

Enough for now. Thanks for reading.

Cycle Number 7

Hi y'all. Zbignews - dose reduction of oxaliplatin from 85 to 65 mg/sqm based on my reports of two weeks ago with the hand cramping (indicating motor effects). Hopefully I'll notice something better with the lower dose but so far not too much difference. Maybe just faster recovery time. Do do the proper experiment I should try to repeat last cycles actions - take subway tomorrow to MGH and see what happens. I probably won't eat steak though and have fork fall out of my hand. That pissed me off. Wonderful Ellen drove me to chemo yesterday. Since it was a late session 3PM - 6PM, we had lunch at Whole Foods - sushi, and cherry tarts for desert. We had much catching up to do so the time went fast. I am still considering an offer to Lou for Ellen. But since she's worth her weight in gold (and maybe a lot more), I am not sure I can afford it. In Africa, these trades are made in cows, pigs or goats depending on the local ag. But real money is also used. I have no cows or children to trade.

Cycle Six - Day 7 - nice weather

Boston Spring weather - cool sea breeze but warm inland. Lots of sun. Goal today of staying out of bed until 10PM. Trying not to do my typical 22 hour layin. Got on the bike this afternoon. Enough wind chill to feel the neuropathy but at least I'm not dropping my fork like last week. Dreading the next cycles. Got to ask the doc about something to avoid the long-term neuropathy. I got enough crap to deal with.

Solar Gain

Hi y'all. The great weather is boosting my spirits and enticing me outside. My enthusiasm must be tempered with respect for ultra-violet solar radiation (UV). Chemo and UV don't mix well. My onc-nurse, Emily, tells me I have to be careful for about a year. The 5-FU effects seem to linger and slow skin repair. So, the free-spirit ways are over - now it's all about skin protection products from sunscreen with high SPF to clothing with Ultraviolet Protection Factor ("UPF"). UPF is like SPF except UPF rates protection against both UVA and UVB.
Check out http://www.coolibar.com/sunprotectiveclothing.html
I bought a couple of clothing items for testing. It's a balance between breathability and solar protection. Standard light-weight fabrics don't have great protection ratings (still better than bare skin of course). But the technical fabrics can pass only 2% UV (reciprocal of UPF rating). Basic rule - if you hold the fabric up to the light and can see through it - it's a fairly low UPF ~5.
Take care. And protect yourself against the sun.

Cycle Number 6

Cycle number 6 start. Ellen is a gem. All chemo'ed-out. yuck. Some radiation recall on my butt (rash). Staggering a bit.

Today I found out that I only get 8 cycles. This is because I don't seem to have a classical colon cancer - this seems to be based on tumor location and type . In any case. I have no plans on insisting on 12 cycles. Eight is plenty bad enough - especiallly since I am going for no dose reductions. BTW, there seems to be no data on dose-response curves. Probably too complex to do with the long time delays involved. They seem to focus on cumulative dose but only relative to side-effects from what I can see. So it's a crap shoot in any case. Basically, it's up to the patient - if he complains a lot, or has some serious symptoms (myelosuppression that can't be compensated for with stimulating factors, transfusions, bad diarrhea, neuropathy to the point of not functioning, can't hold food down, infections, etc.) then they start thinking dose reduction or in some cases in-patient treatment.

Today I talked with three brothers, one of whom has metastatic pancreatic cancer. His mother also had it. They live near some toxic waste dump which was cleaned up a few years back. I'll try to bring the Professor Randy Pausch option with me next time. I might see them again. He's getting something really exotic right now. Check Pauch's blog. Link to nice article by Stephen Jay Gould.

Another guy I know with bile-duct cancer, a wife, and a new baby. He is finishing up his chemo, after having more then half his liver removed. It regenerated well (quite an organ). Now they offered him radiation option (McDonalds onc, I call it) since no data one way or the other. He is looking good on his eighth cycle. Great attitude, great wife.

Ok, bed time (sleep is optional, as usual).

Baseball

Randomly surfing today - saw Brad and Jacqueline on Mass. Ave. last evening in their ~1994 Jaguar which is in great condition. They invited me in out of the light rain. First time surrounded by the mobile leather and walnut. The standard greeting "how is it going?" inevitably leads to my shocking answer (at least for some). This lead to a drive in the Jag and a late dinner with a lot of conversation. Highly energizing - no time to lie in bed thinking of mortality (which happens every night anyway).

Forgot spelling of Jacqueline - so googled and linked to Jackie Kennedy on wikipedia which led to her cancer and then to a list of notables with non-Hodgkin lymphoma which includes some baseball players - most recently Jon Lester - RedSox pitcher (sore back>diag) and Andrés Galarraga - MLB (1st baseman) - 399 home runs, nickname El Gran Gato (sore back>diag).

Non-alcohol beer OK for chemo - great taste, less filling.

Chemo Cycles - 3 to go

Hello all,

I seem to have survived my first five chemo cycles thanks to Ellen's unstinting support during and between chemo. She is my rock of Gibraltar - only much softer and speaks English. I can't give enough accolades to my mother for her incredible emotional support - even now dealing with her own health problems and advanced age. My only sadness is that I may not have the health and strength to support her, and you my supporters, in the next months and years. This sucks.

The colostomy bag thing is getting real stale already. But it's permanent so there's not much point in complaining. On the good side, my old bicycle seat seems to fit my new anatomy. I tested out my rear end yesterday and actually rode (gently) for 30 minutes along the river. No aches or pains today. My bike pants fit more loosely than pre-diag. Those quads (and all the muscles) really went away after surgery. I'll likely need a new bike with a good suspension and seat to avoid damage.

Well, I certainly have found the ultimate weigh-loss regimen. To quote another blogger - when they tell you "eat, eat eat" you immmediately lose your appetite - how true - especially during chemo but also with radiation.

It seems a lot of famous cancer patients have hit the blogs and written books - Fran Drescher's http://www.cancershmancer.org/ has her blog. Fran has a lot of advice in dealing with doctors - mostly good stuff.
And Randy Pausch's blog with his really tough fight against pancreatic cancer. http://download.srv.cs.cmu.edu/~pausch/news/index.html

Ok, enough for a first post in the blogosphere