Tenth Anniversary of Surgery

It's been ten years since cancer surgery.  I have new camera. :)

 

Five Years Since Surgery

Source
http://www.uwmc.uwc.edu/geography/demotrans/demtran.htm

Wow!  It's been five years since I started this blog.  That was a few months after surgery, which occurrred, if I remember correctly,  on the day of the winter solstice.   One of my posts showed a survival  (survivorship ) curve which flattened out after five years.  The slope  (loss rate) likely approaches that of the general population (with some age adjustments).   This area of statistics is called survival analysis .   Survivorship curves come in several shapes. Here are some examples for different times and countries.  The mid-life slope for Europe is about 0.5% per year. 

Anniversaries re cancer

Fourth anniversary of the end of chemo (July 2008).  Fifth anniversary of the beginning of diagnostic process (July 2007).  Now I know why they said it takes five years for nerve damage to repair - I found that shocking then and I still do.  Hey, I'm alive.

Third Anniversary of Chemo - Gregor Mendel - Google Doodle

 Today is the "official" third  anniversary of the end my chemo in 2008 - and 3.5 years from surgery.   To quote Galileo  - from the Italian - "E pur si muove"  ("And yet, it moves" -  in this case time).

I found peas on Google's home page this morning.    Here's what it looked like.

the "Google doodle" commemorates the birth of Gregor Mendel,  father of modern genetics.   Mendel did most of his work with pea plants and documented the patterns and statistics of traits he observed (phenotypes) based on their parental traits. From these observations, he inferred what is known now as the Laws of Mendelian Inheritance.  He observed that traits are not blends of parental ones but specific characteristics  (either there or not with specific frequencies).  He posited that factors for each trait are inherited from each parent but separately (segregation).  And that traits are not inherited as a group but  independently (independent assortment).   As the microscopic and molecular aspects of genetics where later elucidated,  the mechanisms for Mendel's laws became apparent.  We now know that many phenotypes are transmitted in much more complex ways (non-Mendelian inheritance).

Implanted Access Port Removed

Three years and four months after I received an implanted access port - a PowerPort® made by Bard Access Systems (Salt Lake City, UT) - it was removed at MGH today.  The access port, also called a port-a-cath, consists of a  two basic units:  a "portal" (a small reservoir with a silcone rubber membrane for needle access) and an attached "catheter" , a plastic tube , which inserts into a large vein such as the subclavian veins or jugular.  The portal is implanted under the skin near the clavicle (collar bone). 



Bard Access Port
showing portal and catheter

 The port is accessed using a needle which punctures the skin and the rubber membrane of the port.  The membrane naturally seals around the needle and seals when the needle is removed.  The device is designed to be accessed thousands of times.  In the implantation procedure, the catheter is introduced into the vein using a placement tool which punctures the vein and allows the catheter to be inserted several centimeters into the vein as needed.  The placement tool is extracted leaving the catheter in place.

Circulating Tumor Cell Detection

Circulating tumor cells (CTCs)  occur in the blood at very low levels - just a few cells per milliliter. Since each ml of blood contains about 5 billion erythrocytes and 10 million leukocytes,  detection requires a high level of parallel processing and excellent detection statistics.   Advances in the fabrication of micro-mechanics, micro-electronics (MEMS) and micro-fluidics make possible a form of flow cytometry coupled with microarray cell selection and analysis.

The BioMicroElectroMechanical Systems (BioMEMS)  Resource Center of Harvard, MIT and Massachusetts General Hospital is researching ways to sort, select, and detect cells in very small quantities.

Moving Along the Curve

The third anniversary of my surgery is ~Dec. 21.   In a previous post I mentioned the K-M curves.  At 36 months - the probability is about 0.75, and at the endpoint (66 months) it's about 0.68.  So, I am about 90% along the curve - probability-wise that is.   Dr. B, my gastro-doc, says I can be checked biennially (not biannual which is synonymous with semiannual)  now. And Dr A., my onc-doc, says we are going to annual scans.  Nurse E says it's time for the chemo port be removed. It was useful for infusing CT scan contrast fluid. The Power Port can handle  the high pressure and flow rate of the iodine contrast.  The MRI people never had someone who was port capable so they did a venipuncture.   Since the port requires a monthly flush with heparinized saline, and there is a risk of infection etc., the low rate of usage does not justify it staying in. It's been in for over three years.  Anyhow, I hope I'm not jinxing anything by having it out.   :)

Six Month Scans

I had my chest, pelvic and abdominal CT scans a few weeks back. Good news, no observable changes. Also, the radiologist said he does not need a followup MRI like the last several times - the stuff in my liver seems to be pretty static. Just in case, my onc asked me to come in this week for a CEA blood test. It's standard practice to do these, even though they are not that specific.

The off-shore oil well in the Gulf of Mexico continues to erupt a mile below the surface. It's been over a month - I'm not sure if the flow rate has diminished much, if at all. I doubt British Petroleum expected that much of a "gusher". In any case, it's a major disaster and I hope better regulations come out of it. I'm sure there's a way to measure the pressure in a reservoir prior to making a large hole in the earth. In this case a smaller drill hole would have been good enough.

The space shuttle program is ending this year. The last launch of the shuttle Atlantis occurred on May 14. Here is the youtube video courtesy of NasaTV.

Second Anniversary of Surgery

It's been exactly two years since my AP resection surgery. Last week I talked with Dr. A about my recent CT and MRI scans which show nothing new (yeah!). I asked what she used as the "zero time" of the survival curves - she said surgery date is something they use traditionally rather than diagnosis date. So I'm officially two years down the curve - these curves are called DFS-Kaplan-Meier(KM) probability curves (see graph below).

In earlier stages of cancer, these curves seem to have an asymptote - that is they flatten out to some non-zero constant (the number still surviving after x months). More likely, they approach the KM curves non-cancer people of similar age. Probably the slope is something like 1% per year. Compared to 30% per year (in the early parts of the Stage 3 curve), I'll take 1% as close to zero. :)

The winter solstice occurs when Earth's spin axis has it's maximum tilt away from the sun. This year, it occured today at 17:47 UTC. The spin access of Earth does not visibly change direction over a sinlge orbit of the sun. Due to the fairly even mass distribution, and damping forces, the earth's axis wobbles only slightly (and precesses slowly) - this is called nutation.

The solstice happens twice each year - in summer and winter. At these times, the sun's declination angle is an extremal - it "stands still" (sol stitum) as it changes direction from it's lowest or highest angle relative to the horizon. Of course, in the heliocentric reference frame, the sun stands still and everything else moves. This is pretty natural for our neighborhood. Relative to the galactic center of mass, the sun does move but at only about 250 km/sec (tiny by galaxy standards).

First Anniversary of Chemo

Today is a replendent day in Beantown. The greens are glowing and the sky is pale cerulean. Cambridge, MA is a sister city of Florence (Firenze), the capital of Tuscany. Also, Coimbra Portugal. Yesterday I skated along the Charles River and the day before I rode my bike to Everett, MA along the Mystic River which is not to be confused with the other Mystic Rivers out there. The book and movie with this title are based in Boston. The other one is near the town of Mystic, CT - a very pretty place on the ocean. Several movies have been shot there. Mystic Pizza is probably the most popular one with Julia Roberts making her film debut.

News from the medical front: I saw Dr. C, my wonderful surgeon, a week to two ago - we meet once a year since I'm being followed more closely by Dr. A, my oncologist. In May, she told me I won't have to see her (and get more scans) for another six months. So I won't have the pleasure of her company until Nov. I'm scheduled for my 2nd stoma colonoscopy in August - almost one year to the day from my last one. Perhaps a one month delay would be nice - can't hurt (I hope).

This post needs a picture - let's see what I can upload from my hard drive.

Nine Months Post Chemo

This is scan weather. My onc told me it was time for another set of scans - three months since the last, I believe. Last week, I was in for a CT scan of chest, ab and pelvis. No changes since last - that's good. The radiologist also wanted an MRI for comparison - Dr. A gave me good news - the status is quo ante. :-) In celebration, I went for a nice bike ride to Bedford on the Minuteman Bikeway , one of the "rails to trails" projects in MA. Here's a pic of the Bedford Depot end.

I also did some celebratory eating and drinking at Jacob Wirth's - not healthy stuff of course.

Springtime Without Chemo

Ice skating season is over in practice - my local ice rink is closed until late fall. This saves a bunch on electricity and also forces me to find alternatives. Since I love in-line skating on five-wheeler speedskates, it's not a big problem. I also like cycling. It's a lot easier on the body than in-lining on a bad surface (and most are). In-line wheels are made of solid polyurethane rubber and they transmit all the tiny bumps right up your legs. Pneumatic bicycle tires are a great invention - they absorb those high-frequency vibrations very well. I'm sure you've noticed how solid rubber tires are no longer in vogue. :)


Spring cleaning of in-line skates is a time to relax and bond with ones equipment. Bearings and wheels must be disassembled and evaluated.





Skating along the Charles River is quite convenient and the path on the Boston side, near BU has been recently redone. It is quite smooth and flat. The Charles river bike path is named after Dr. Paul Dudley White, a prominent Boston physician and cardiologist.

Lastest CT Scan and Thanks to Many

Charles River Ice January 2003


It's Friday the 13th - the news is good - my MGH oncologist Dr. A says there is nothing on the scans to be concerned about at this point. My next scan is in three months. Having got here, I am in a thankful mode. I want to thank my MGH team: Dr. G, Dr. A, Dr. Z, Dr. H, and my great surgeon Dr. C, along with Emily O, NP; Esther O, RN, and Amy B. , Jill C-A, Ellen O. and all the nurses and specialists that have worked on me from head to toe. I also want to thank the staff at Blake 11 Dr. W & Dr. G for helping me through my recent issues. Without their recent work, there's no way I would be gallivanting across the Atlantic to skate the tracks and canals of the Netherlands.

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

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.