request (written) to surgeon

Tomorrow morning I plan to use the written request to help create better understanding between myself and Dr. Lowe the surgeon.

Request to  Dr. Bruce Lowe, Surgeon

Background:  Based on April 19 day surgery for removal of a bladder tumor I understand that I have Bladder Cancer, or more precisely

“Urothelial carcinoma, high grade, invasive in the muscularis propria”

So, we have agreed on the following surgery: 

Radical Cystectomy (including prostate and lymph node removal), Ileal Conduit and Abdominal Stoma creation.

My goal is to maintain a high quality independent life.

I do fear a stroke.  I do fear long-term chronic pain.

I do fear losing my independent high quality life.   

I do not fear dying. 

Therefore

1. I’d like the anesthesiologist to work with us in helping minimize my pain in the days after surgery…maybe an epidural?

During surgery or later:

2.    IF you find that the cancer has spread beyond the bladder please consider alternatives that would allow for higher quality and perhaps a shorter life. (I understand and agree that the alternatives you choose might include deviation from the normal protocol of a radical cystectomy.)

3.    IF during surgery or my hospital stay, something goes wrong and my body is unlikely to return to the pre-surgery base line of a high quality independent life, let the body die. 

Notes: I have discussed these matters in great detail with my wife and three adult children.  All five of us are in complete agreement with the above requests.  I have signed a POLST and an Advance Directive.

 If the cancer has spread beyond my bladder, my intention is to choose palliative care only…  forgoing further surgery or chemo treatment.

Given of my own free will, May 23, 2011

John R. Wish DOB 7 November 1934

Witnesses

an angel

Soon, Ann K. Wish, my granddaughter will be here.  She plans to physically be with us from May 24 to June 2.   What a blessing as she will have received her BSN May 22.

Have plan will travel.

Today is good!  In fact, all this week has been good as Mary Ann and have   begun preparation for the long journey out of this place I call “Cancerstan”. 

In Cancerstan,  my continued health is most uncertain, the good guys are as dangerous as the bad and there are roadblocks, potholes and IEDs  everywhere…Mary Ann and I have been working together to get out of Cancerstan.  In this place, the best guides and transportation seem to be provided by medical professionals.  (While we’ve heard suggestions of choosing transportation via frequent coffee enemas we’re not yet ready for that.)

We have  talked with numerous friends new and old and had office consultations with four urologists, three nurses, two oncologists, two naturopaths and a body works person. This week we have selected our guides to get out of Cancerstan.  Those guides include:

Surgeon Bruce Lowe MD FACS  

See http://www.nwurological.com/ourdoctors/lowe.htm

he will do a radical cystectomy

See http://en.wikipedia.org/wiki/Cystectomy

An Ostomy nurse (aka the  “bag lady”)  will teach me how to use “the bag” See http://en.wikipedia.org/wiki/Ileal_conduit_urinary_diversion

Oncologist Marcus Braun, MD  will provide medical oncology advice.

See http://www.nwcancer.com/dr-marcus-braun.php

Naturopath, Ken Weizer, ND will provide alternative advice regarding keeping well… See http://oregon.providence.org/patients/healthconditionscare/metabolicsyndrome/Pages/careteamlanding.aspx?CareTeamName=Ken%20Weizer&LinkType=RltdCare

Mandy Gregg, LMT will provide deep tissue massage and I will be continuing weekly yoga exercises.

For the next ten days we are planning to build our resistance through good food, lots of rest, exercise and fun time with plenty of sleep.

THEN May 24- Major Surgery

I anticipate that major step will result being on the trek out of Cancerstan.

Tuesday at Good Samaritan Hospital  in NW PDX, 8am surgery with Dr. Bruce Lowe in charge...radical cystectomy, prostate and lymph node removal with construction of an ileal conduit and stoma...expected time in surgery 3-5 hours...followed by 5-10 days hospitalization.  I am expecting lots of pain hopefully often masked by morphine and sleep.  (The surgeon has encouraged me to consult with the anesthesiologist regarding pain management.  

And, it so happens that we are fortunate to have a good anesthesiologist who has agreed to be available for consults. (:-)  )

On or about June 1, I expect to return to my safe house for two to four weeks of lots of sleep and slow movement.  

Must move around but will be moving slowly.  WE will be learning a lot  and have been told recovery is a many week process...likely the entire summer.  

Note: The most satisfying part of this unexpected visit to cancerstan was yesterday's 1.5-hour consult with oncologist Marcus Braun. 

got some maps and promise of snacks

We have been shown the main highway out of cancerstan.  Surgery really is scheduled for May 24, subject to all going well on this Thursday morning's pre-op meeting at surgeon's office. 

Earlier today, we met with "the bag lady", Beth.  Her professional designation is "ostemy nurse" but she really she deals  in bags for the trip that I must take.   She advises on all aspects of bags and suggests adjustments for each traveler.  She also advises on care and treatment of the attachment so diaper rash is minimized and is also available for helping each bag user how to best take care of it.    Yes, the bag looks like a good alternative for this trip.  (it'll be interesting to see how the surgeon reacts as he prefers sewing in a internal "neobladder".)

At mid day we met another map vendor, Kenneth Weizer, ND.  We meet with him again Monday to find if  his snacks will make our journey more comfortable.

out of quicksand, still lost

I'm so thankful that Dr. Jim got me out of the quicksand of deciding which of three surgeons should operate...It will be Dr. Bruce Lowe at Good Samaritan here in Portland.  Today we work out that schedule.

I'm shedding some of my baggage, yesterday I resigned as head of my Quaker Meeting's Finance Committee.  At the same time, friends and family are becoming ever more important.

However Mary Ann and I are still lost here in Cancerstan.  Having "decided" on an external bag for the replacement bladder, I found out that a friend who has one will not travel on an airline as he is worried about an accident...Ouch, that boulder is (temporarily?) blocking the path.  I want to go to Europe late this summer.

which treatment and by whom

It's taking much too long to develop a rational plan for getting out of cancerstan.  I had imagined setting up a full treatment plan within a few days after the diagnosis.
Surprisingly to me, even though I've known about my stage 2 bladder cancer since April 25, we are still pondering the particular treatments and the dates on which they will take place.

The gold standard of treatment is well understood in both the USA and Europe to be Radical cystectomy including removal of bladder, prostate and lymph nodes.  Various tests are recommended before any surgery including complete blood work up (done during day surgery on april 19) and chest CT and bone scan (to be completed tomorrow May 6 at Legacy Emanuel.)  If any of those tests show that the cancer has spread, we may not do surgery.
In addition,   we are considering a short course of chemo before surgery as that may increase survival rates 5% to 10%.  However chemo delays the surgery and surgery delayed will likely result in more cancer.  With the chemo short course, surgery would likely be delayed into July.
Without chemo, surgery could take place around May 24.

First appointment with a medical oncologist is next Thursday.

Since April 25, Mary Ann and I have interviewed  Urological surgeons from three different groups and gotten their advice.
Each of them do this Radical cystectomy with a partner...
Each of them have been upfront about this being serious major surgery resulting in 5-10 days in the hospital and then 2-4 months recovery. One of the surgeons suggested recovery from this operation is more difficult than open heart surgery.  And, medical lit suggests complications in 25-30% of these surgeries.

 Jim Puterbaugh our family doc of 22 years has been guiding us on this journey into Cancerstan.   Until yesterday Jim had been been encouraging us to look around for the specialists that fit.    Yesterday he changed his tune and strongly recommended that we have Bruce Lowe do my surgery. Reasoning: Lowe has been doing Oncological urological surgery for years and has  done more Radical Cystectomies that any other.  He is intensely competitive which suggests he will do me better.

continuing query
what is a reasonable amount of treatment?  When is it right to let go?
Side bar: I am a big fan of Atul Gawande.  See his 2010 article "Letting Go" http://gawande.com/articles

concerns & joys

Cancerstan is dangerous...visibility is limited, the environment is harsh, there are landmines,  and I am finding that both the good guys and the bad can cause harm.
My senses are sharpened and am ever more aware of the love and beauty all around.  I am especially appreciative of the loving support of family and friends.

arriving in CANCERSTAN

5:30 am April 5, I  pissed two big clots of blood,
THAT GOT MY ATTENTION!

Although I suspected, I wasn't sure, as the landscape was the same,

9:30am April 25, the (pathologist) map maker confirmed to my guide (Dr. Sajal Dutta, surgeon) who showed me the map... I was
 in the city of

Urothelial carcinoma, specifically the neighborhood of high grade, invasive into the muscularis propria. YES, I am now in the nation of cancerstan with stage two bladder cancer. If you want more details on this neighborhood, seehttp://www.5minuteconsult.com/5mc/750796