Getting out of the cave -- My new guide

 (July 19)

Eight weeks…eight long weeks since my extraction from Cancerstan on May 24.  Eight long weeks living in the cave of “recovery”…Frequent meetings with various guides; lots of sleep and a little exercise.  For the most part, it ahs been a matter of just being.  It has been a learning experience and learning is so difficult.

 The time has come to get out of the cave and actively move further away from cancerstan with as much independence and quality of life for as long as possible.  I do not want major interventions by doctor/guides whose ministrations all too often result in remaining in the cave of recovery and dependence.  I do not want to be in the situation of many long time cave residents, who are unable to take care of themselves and/or do not know who or where they are.

Angela Kalisiak, MD is my new guide.  After 20 years in the drug trade (as a medical oncologist) she now devotes most of her time to palliative care.  Palliative care docs help people maintain quality of life.  They work with those of us who have been to cancerstan, strokestan, heartestan, traumastan etc. who desire a “better” and less invasive path with the main goal being a high quality independent life.  SHE IS GOING TO BE A VERY IMPORTANT GUIDE.

Here is an example of avoiding the invasive debilitating and expensive treatment.  With the help of family and support committee, 

I have made a Decision:

There will be no chemo.

The path ahead is uncertain. Still, I am determined to leave this cave and get back on the path to independent high quality of life.

Drugs

To avoid another trip to cancerstan, drugs have been suggested.

My guides tell me I may be taken back into cancerstan whether I do chemo or not. 

Bladder cancer five-year survival rates, with powerful & poisonous drugs, range from 50%--75%.   Without drugs, survival rates are some 10% less, 40%-65%.  (I found nothing in the medical literature about the most important issue…quality of life.)

Beginning the last week in July, my medical oncologist is recommending drug use for a “cure”.   The drugs do target any remaining cancer cells and in addition do have side effects that could include kidney problems, neuropathy and/or hearing loss.  The oncologist recommends four cycles of three treatments each.  Each cycle is often “only” three weeks long.    IF white blood cell and palette counts remain within acceptable limits, all can be completed within three months.  At any time the white count is too low, a new drug costing $6000 per treatment is given and treatment is prolonged.  

When ought curative treatment stop?

Conclusions:

We spend ever more on old folks. Given the side effects and the costs, I doubt I will choose the chemo.  

Guides/contractors

I want to stay out of cancerstan as long as possible.  However, it’s hard to know which guide is best at a particular time and place.  In this place, where I’ve been since May 24, the surgeon is my guide and “general contractor”.

Contractors and related subcontractors remain my guides… In order to stay out of Cancerstan I have had to deal with several subcontractors which seem to be as numerous here as they are in Iraq and Afghanistan.    Current subcontractor guides include my family doc, a naturopath, a Chinese body medicine specialist, a medical oncologist,  an anesthesiologist, Ostomy nurses (aka “bag ladies”) and related technicians who drive the sophisticated machines which measure status and record body conditions.

A former subcontractor guide, the pathologist, advised that the May 24  surgery  got me out of Cancerstan  In Stage 3. Most likely in another 2 to 4 weeks, I will have recovered from the surgery and will be assigned a new “general contractor”, the medical oncologist.

In the meantime, there have been some misunderstandings, most likely due to translation problems between the general contractor’s medical assistant and me.  Hopefully, there will be no emergencies as currently I am only allowed to talk with the surgeon who is on vacation through July 16. 

The guides have all been helpful but still I am finding it difficult to live by my mantra “Accept what is, Live simply, Love generously, Speak kindly...Leave the rest to God”.