Dad’s Fork in the Road…

Mark:

My situation is similar to your father's, but my rectal cancer is stage 2, not 3.  Statistically, that means things are different but what is not different is the fact that each case of cancer is unique.  Decisions must be made and the person who should make the decisions is the patient, as long as that person is mentally capable to do so.  I say this for a few reasons.  The patient is in the best position to know what impact the disease and its treatment is having on one's health and the patient is the person who must live with the consequences of those decisions, therefore he must be empowered to make the decisions.

I was diagnosed in May 2017 with rectal cancer.  After a few months of testing I underwent neoadjuvant chemo/radiation treatment for five weeks.  Immediately prior to my resection surgery in October I had a CT scan which indicated that my tumor was gone - it had responded 100% to the chemo/radiation treatment.  The best possible outcome.  Regardless, my surgeon removed that portion of my rectum where the tumor "had" been.  He also collected four lymph nodes for examination.

The surgical path report indicated no evidence of disease (NED) which was wonderful.  However, my surgeon thought it wise to temporarily divert my intestines with an ileostomy to allow my rectal resection to better heal.  I am now living with an ileostomy and it has disrupted my life (sleep pattern altered significantly; weight loss; social isolation; depression).

Following a brief recovery period after my surgery, my oncologist recommended 12 weeks of adjuvant chemo (mop-up chemo) therapy.  I negotiated for only 6 sessions of FOLFOX6.  After three sessions I could not take anymore.  I stopped the treatment.  My weight plummeted to 128 (I started this cancer journey weighing 150).  My energy level and stamina were low and seriously impacted my ability to do virtually anything without having to rest (a fatigue that is so deep and pervasive that it is hard to describe).  My blood chemistry was so suppressed that I was either going to have to have blood transfusions, IV therapy or hospitalization to improve my ability to withstand further chemo therapy.

That is when I said no more for me.  I made that decision after deliberation, prayerful thought, and much research.  The greatest issue for me has been and will continue to be quality of life.  My treatment had reached a point where my quality of life was significantly degraded by the chemo.  I will soon be 67.  The average life span for a male in the U.S. is between 76 and 84, depending upon which government database you select.  The likelihood of adjuvant chemo extending my lifespan is measured in a small percentage but at the same time I was experiencing the degradation of my quality of life.  I said no more.

This was my decision, as it should be.  I have taken into account medical advice, my feelings and desires, and the impact my decision has had and will forever have on my family.  None of us live in a vacuum but at the same time my body is only occupied by me.  I am the captain of my ship, the master of my soul.  I borrowed that sentence from the poem Invictus by Willaim Ernest Henley, quoted fully below.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Mr. Henley wrote those words after enduring leg amputation and facing the recommendation to amputate his other leg.  But instead he chose an alternate procedure which was successful.  Thus the emotion and true expression contained in his verbage. 

I identify with Mr. Henley's situation and decision.  Your father may as well.

Jim

Hi Mark and welcome! Did they say your dad was cancer free based on his CEA level? Or in combination with the PET scan? My CEA level was always low even when I had a huge tumour, always below 2. So that kind of scared me for your dad. They'll keep checking on things, I assume.

I hope for the best for your dad! Please do keep everyone informed about his journey, it is very helpful.

Jan

Folfox didn't prevent reccurance in me and the overall percentage given as the positive outcome chemo offers is suprisingly low, so given your pop's age and the initial good indicators, plus the ongoing monitering they'll be doing anyway, I'd say it's a good call. The best of luck to him...........................Dave

Vette04 said:

Thanks Dave

Thanks, I appreciate the feedback.  Is Beaumont where you live?

Mark

 

In beautiful SoCal, though my little hometown is turning into the edge of LA's mega-burb. Still an easy ride to the mountains, the desert, or points beyond. Only the beach and LAX have gotten harder to time and will my way to...................................................Dave

airborne72 said:

Tough decision, for sure...

Mark:

My situation is similar to your father's, but my rectal cancer is stage 2, not 3.  Statistically, that means things are different but what is not different is the fact that each case of cancer is unique.  Decisions must be made and the person who should make the decisions is the patient, as long as that person is mentally capable to do so.  I say this for a few reasons.  The patient is in the best position to know what impact the disease and its treatment is having on one's health and the patient is the person who must live with the consequences of those decisions, therefore he must be empowered to make the decisions.

I was diagnosed in May 2017 with rectal cancer.  After a few months of testing I underwent neoadjuvant chemo/radiation treatment for five weeks.  Immediately prior to my resection surgery in October I had a CT scan which indicated that my tumor was gone - it had responded 100% to the chemo/radiation treatment.  The best possible outcome.  Regardless, my surgeon removed that portion of my rectum where the tumor "had" been.  He also collected four lymph nodes for examination.

The surgical path report indicated no evidence of disease (NED) which was wonderful.  However, my surgeon thought it wise to temporarily divert my intestines with an ileostomy to allow my rectal resection to better heal.  I am now living with an ileostomy and it has disrupted my life (sleep pattern altered significantly; weight loss; social isolation; depression).

Following a brief recovery period after my surgery, my oncologist recommended 12 weeks of adjuvant chemo (mop-up chemo) therapy.  I negotiated for only 6 sessions of FOLFOX6.  After three sessions I could not take anymore.  I stopped the treatment.  My weight plummeted to 128 (I started this cancer journey weighing 150).  My energy level and stamina were low and seriously impacted my ability to do virtually anything without having to rest (a fatigue that is so deep and pervasive that it is hard to describe).  My blood chemistry was so suppressed that I was either going to have to have blood transfusions, IV therapy or hospitalization to improve my ability to withstand further chemo therapy.

That is when I said no more for me.  I made that decision after deliberation, prayerful thought, and much research.  The greatest issue for me has been and will continue to be quality of life.  My treatment had reached a point where my quality of life was significantly degraded by the chemo.  I will soon be 67.  The average life span for a male in the U.S. is between 76 and 84, depending upon which government database you select.  The likelihood of adjuvant chemo extending my lifespan is measured in a small percentage but at the same time I was experiencing the degradation of my quality of life.  I said no more.

This was my decision, as it should be.  I have taken into account medical advice, my feelings and desires, and the impact my decision has had and will forever have on my family.  None of us live in a vacuum but at the same time my body is only occupied by me.  I am the captain of my ship, the master of my soul.  I borrowed that sentence from the poem Invictus by Willaim Ernest Henley, quoted fully below.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Mr. Henley wrote those words after enduring leg amputation and facing the recommendation to amputate his other leg.  But instead he chose an alternate procedure which was successful.  Thus the emotion and true expression contained in his verbage. 

I identify with Mr. Henley's situation and decision.  Your father may as well.

Jim

...for continuing to share your story, and especially for sharing that poem. What an incredible back story. 

Hope you're enjoying that grandbaby and regaining your strength!