Robert’s Story

Site created on May 28, 2020


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Hi.  So this is long overdue.  The purpose is to let people know what is going on with me without necessarily requiring individual correspondence.   To be clear I value the emails, texts, calls, and cards very much, but this allows questions to be answered in advance.


So, I have Stage Four Colon Cancer.   That means it spread to at least one other organ, in my case, the "peritoneum" which is an organ I didnt know I had until this all started.   Basically, on November 22, 2019 (yes the anniversary of the JFK assassination) I had a colonoscopy.   One polyp was deemed too big to remove but the biopsy was negative, so it was initially a sigh of relief.  Read on.  There were delays in finding a specialist, but I did go in for the removal on February 7 at Weill Cornell in NYC.   It couldnt be removed endoscopically and the doctors didnt like the look of it.   I was then told I likely needed a different kind of laparoscopic surgery, but that I needed a catscan first.  That's when things really started going south.  The catscan revealed likely "peritoneal implants" which are areas where cancer has spread.  The peritoneum is basically an envelope that covers the abdomen.  Never heard of it but cancer getting into it is not good. One quite sizeable on my right abdomen.    There was another in the area of my navel.    Basically, the "polyp" or "tumor" in my colon was never benign.  It was benign on the "inside" facing into the colon, but it was malignant on the outside, where the colon and the peritoneum meet.   (Oh, I also have a cancerous tumor on my right kidney.  This has to be removed someday but the doctors have told me that kidney cancer rarely spreads to other organs and that my war is with colon cancer, not kidney cancer.)



Late February into mid March was nothing short of a nightmare.   On February 26 I had a "pet scan" down at Weill Cornell but found myself in excruciating pain in my lower back.  Turns out it was a kidney stone in the left kidney, unrelated to the cancer, so I had to go to the emergency room for kidney stone meds.  Next day I got my "chemo port" which is the hole in daddy's right upper chest where all the chemo goes.  (John Prine reference).  On the 28th I had another colonoscopy (#3) to get more data.  But over the weekend I had a fever.  Went to our local hospital thinking it was the kidney stone.   Long story short it was an infection near the colon tumor and they sent me back to Weill Cornell where I was hospitalized until March 13.  They treated the infection and gave me my first round of chemo which had been postponed due to the infection.   Of course while I'm in the hospital I keep hearing about Covid19 and nurses are telling me the rumors about patients being admitted.  This was scary and still is because chemo patients are way low on immunities and are particularly susceptible to Covid19.  



With the help of a dear friend, I did get home on March 13th and have been living largely in isolation since trying to stay the hell away from Covid19.  My chemotherapy transfusions fortunately were transferred to Hudson Valley Medical Center, so I only need to drive 20 minutes rather than go into the city.   I could get seriously Dickensian about chemo but basically it works like this.  I am on a standard protocol for colon cancer called Folfox IV.   I have had 9 infusions in total and get three different kinds of chemo.  The first five hours take place in the hospital but then they send me home with a 46-hour slow drip chemo pump attached of course to the hole in Daddy's chest where all the chemo goes.  I go back to be "unhooked" two days later.  Chemo sucks.   The side effects tend to hit when the chemo ends.  They never go away completely but the bad ones for me which are bad for several days are serious fatigue (with some chemo fog) and the combination of loss of appetite and taste.   I've lost about 35 pounds and do a lot of heroic napping.   After one chemo session I slept 18 hours.  I also have to take blood thinner shots twice a day because clots were discovered in my lungs -- not uncommon during chemo.  Oh and I get shots to boost my white blood cell count too.



So is it working?   A catscan in late May become subject to interpretation. Everyone agreed no spreading of cancer which was good to know. The folks at Hudson Valley thought there was significant shrinkage of my big peritoneal implant but the colon experts down at Cornell were less convinced on the shrinkage front.  Either way more chemo!  I have done several more since that catscan and have three more scheduled through the end of August.  Then another catscan-- this time back down in NYC -- on Sept 2.  I will consult with my oncologist who will recommend what is next.   Significant surgery is possible and likely would be followed by more chemo! (Hurray!).  Or the chemo protocol could be changed to something more or different.  My oncologist is pretty tops in his field, but I will wait until Sept 2 to get the news.   He has told me something which is already obvious I guess -- this will be a long battle. 

Newest Update

December 31, 2023

Journal entry by Robert Culp —

Happy New Year Dear Friends!

Dear Friends of Bob:

I thought I would share what I intend to be the last update on my health at least for a long time.  And for all good reasons.   I dont know how many of you are still getting notifications from Caring Bridge, but here goes.

Earlier this month I had a chest CT scan and an abdominal MRI.  All is clear.  The once concerning liver adenoma has not grown in these years, and is now dismissed as anomalous.  I also had a colonoscopy, just one polyp.  The big picture:  I am now three years out from my major surgery.  The statistics say that clearing the three year hurdle with stage four colon cancer is a big deal, significantly lowering (but of course never eliminating) the risk of recurrence. 

But wait there is more -- as of December 29 which fittingly would have been my father’s 101st birthday:   They did a new test that scans blood for tumor DNA.  My oncologist has told us multiple times that just because no tumors are seen on scans or in colonoscopies, doesn’t mean that tumor cells aren’t in my system communicating on social media and discussing the next attack.   Well the new result was a shutout.  0.  All would be tumor cells thrown out by Roberto Clemente at home or sacked by Mean Joe Greene.  Really terrific because despite the fantastic scans, Dr. Shah said based on my history to prepare for a positive (i.e. negative) test result.  A year from now, all these tests will be repeated, and a year after that, and so on.  At some point the tide could turn again, but there is no reason to think that will happen anytime soon.

I guess I should add that I am damaged.   Down a colon section, half a thyroid and one kidney barely if at all functioning.  The lasting effects of two years of chemo dozens of surgical procedures and enough prescriptions to open a pharmacy.   And the PTSD I described in the last update.  It still visits me regularly in strange and frustrating ways.  I guess I have to live with that, but the key word there is live!  Four years ago when this all started, who knew where it was going.

So that is hopefully your final update!   It is a cliche I know, but it is not possible to describe my gratitude for all of your kindness and support over these trying years!  Paraphrasing Its A Wonderful Life, I am wealthy with family and friends. 

And now I return you to your regularly scheduled New Years preparations. Fittingly, a visit from Covid Claus will have Saint Vivian and I toasting with the finest 2023 Paxlovid.

Happy New Year! 

Love Bob


 

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