Friday, September 28, 2018

Tales from the Crypt ~ Part 4

Putting Humpty Dumpty together again ~

When in Rome/Home!! - Years ago, I visited Bath, England, about a hundred miles from London, where in the 1st century AD, Romans utilized the naturally occurring hot springs to create an amazing spa and bath surrounded by a lovely city.  After driving oak pilings into the mud, stone chambers were built, in which lead lined pools were created so that the warm waters could flow into them and be contained.  Beneath the floor, furnaces were used to heat the chambers, including the walls, using chimneys and pipes to circulate the heat, preventing the flames from touching the walls or floors directly.  Folks usually began their process by sitting in warm humid rooms, scraping the softened dirt and debris from their skin with curved a metal instrument called a strigil - moving to the most heated pools, followed by cooler ones as they sought cleanliness and comfort.  All this to say, that I, like the Romans, am in serious need of a long soak and scraping with a strigil!  However, a shower makes a world of difference.  It is a slow and laborious process to wash my hair and make a first pass at cleansing my neglected body.  Oral care alone, despite brushing my teeth repeatedly, daily in hospital, is not easily maintained with forced mouth breathing due to an NGT.  I make a first pass at all things and feel much better.

Poopage - Diarrhea continues about every 2 hours.  However, over the next couple of days it slows.  I am thankful, but extremely paranoid.  The last time this business slowed, things did not go well!  B comforts me, telling me I am repaired.  Things are supposed to slow, as my gut in general deals with the re-introduction of food and my remaining colon learns to remove additional water from the debris to make up for the portion that was removed.  Bowel function gets better slowly.  A full week after discharge, I am finally NOT pooping throughout the night and something resembling normal stools are finally evident.  BEYOND TMI!!!!  Yes?  I have always been a bit perplexed at the attention some folks place on their poops and those of their children.  Perhaps this has been my punishment.  At any rate, I am thankful for something heading in the direction of normalcy.

Starvation leaves a mark - 19 days with inadequate nutrition have taken their toll.  My skin actually hurts...from pokes, prods, and nutritional deficits.  The soles of my feet and fingertips burn.  I look like a 6 month pregnant, plucked chicken whose ass is a bag of flap jacks hanging about my knees. I continue to have a great deal of swelling to my thighs and abdomen.  The muscles I worked so hard to build up over the past year have evaporated. Saggy baggy boniness is all that remains.  My skin peels pretty much in its entirety.  Weird.  Still each day gets better.  I can now stand and walk without trembling.  B has started me on an iron supplement and a daily multivitamin.

My food pushers - Ruthie returns once we are home with the most well planned and thoughtful menu for a post abdominal surgery convalescent that could be imagined!  She is a wonder!  She arrived with meals prepped and all ingredients in hand!  (As well as 'activities'!!!)  B prepares yogurt with fruit along with a variety of eggs and toast for breakfasts.  Ruthie is in charge of lunch and supper, starting with the most amazing chicken avgolemono soup!!  Such lemony goodness!  She, and it, get full marks for starting me on the road to recovery!!!  There was a roasted pepper soup containing all sorts of pureed vegetable goodness.  Egg salad.  Creamed tuna and rice.  Split pea soup with carrots and ham.  My food pushers have settled on a soft but high protein, high calorie diet to try to build up my strength and weight which is down 10 pounds and probably much more when you account for the retained fluid.  But, my appetite is coming back!  I eat small meals at least 5 times daily.  B jumps to fix me anything I express interest in.  Now, a week and a half out, he finally admits that I am actually eating well!!!

Pain - I've always wanted a "pain-o-meter".  How much pain is one experiencing?  How much pain is typical for 'x'?  I don't even know how to judge it for myself, much less others.  Ironically, I have been sent home with major drugs for relatively simple dental procedures, though they went predominately unused.  After this fiasco, I have been taking only Advil and Tylenol.  I am doing okay.  Initially, lots of positions or movements were quite painful.  It gets better daily.  I try to breathe deeply and stand straight, as the tenderness below my ribs makes me tend to crouch to protect the area.  I am finally able to turn over in bed somewhat normally, rather than having to stand and start over.  I have yet to be able to sleep more than 2 hours at a time as I get too uncomfortable and must get up to re-position.  By 5 or 6 am, I am back in the recliner so as to rest in a different position.  It's okay.  I get sounder sleep as the days go by.  Surely, this too shall pass.

Now what??? - I saw my surgeon Tuesday.  He removed my staples and felt that things were healing well.  When I asked how he recommended I proceed to gain my strength, he said, "Don't go start running just now!  But, do a little more than you think you can each day."  Brent looks rather stricken, "John, c'mon, man!  Give me a little help here!!!"  I will recheck once more with him in a couple of weeks.  The following day we see my local oncologist.  To review:  my ovaries, the portion of colon removed, gall bladder, and all lymph nodes were negative for both melanoma and my newly discovered adenocarcinoma ex-goblet cell carcinoid.  To visual examination, my surgeon reports no evidence of seeding.  All very good news.  Still, I did have a 10.5 cm mass in my appendix albeit with clear margins and without it having penetrated the serosa (the thin plastic wrap like layer that covers the outside of our intestines).  Making me, as best we understand, Stage 2a.  Conversely, at a cellular level, the cancer is one of the most aggressive for its type, with most folks who have it already Stage IV at diagnosis.  It is hard to know what to think about that.  You could assume that folks with my cancer are very likely to progress due to its aggressive nature.  However, because most folks with this cancer are asymptomatic (Just like me!!!  Perfectly fine!  No pain.  No problems!!!) until extreme abdominal spread has already occurred, making itself known with pain and other symptoms that send them to the doctor, where they are found to be in a very bad place at the very start.  So...  What to do?  No one is sure.  B has reviewed every paper published on my carcinoid type since the 80's.  The numbers of peeps are small.  Folks like me, even fewer.  The options for someone in my position, Stage 2a, rendered NED, are:
1.  Watch and wait.  With some sort of scannage, frequency and type yet to be determined.
2.  The doc with some expertise in this cancer at Vanderbilt is treating some folks with FOLFIRI or FOLFOX.  In his current treatment group there are only 2 like me and they are doing well.  BUT.  Are they doing well, because they would be doing well no matter?  Or, are the doing well because of the treatment?  What are FOLFOX and FOLFIRI?  I use my time with the NP at my oncology visit to learn about them.  Her face and answers makes it clear that the regimen is harsh.  They are basic old school shit chemo used for gastric cancers. FOLFIRI = calcium folinate, 5-fluorouracil, and irinotecan.  FOLFOX = folinic acid, dluorouracil, and oxaliplatin.  Both can cause nausea, diarrhea, neutropenia, fatigue, stomatitis.  FOLFOX is a little better tolerated than FOLFIRI. A port is placed.  A pump, which you wear in a "fanny pack" is attached and administers the med over the next 24 hours (I think. B thinks 48 hours.) every 2 weeks, for 6 months.  So you go in to have the pump attached and return at the appropriate time to have it removed.  Plenty of poor souls survive this daily.  Bless 'em.  But, DAMN!!  I don't want to have to go through that!  The thought of 6 months of nausea and diarrhea are rather horrifying just now.  More importantly, I need to try to figure out, somehow, if going through the misery of completing this nightmare, would even do me any good!!!  On a positive note, if I do participate in this treatment option, I can have it done locally.  These are old drugs.  They are FDA approved.  My local onc is very familiar with their administration so I would not have to be going back and forth to Nashville for them.
3.  Finally, in an ironic twist, docs are also doing some work in treating this type of carcinoid with anti-PD-1 (the med I took for melanoma) and anti-PD-L1!!! Apparently, many carcinoids test positive for these proteins/ligands.  So, B is going to have pathology look at my tumor for those - as well as other targeted/genetic mutations.
4.  There are some biomarkers that can be followed to determine status, so we will be looking into those as well.
5.  We have told Dr. Weber of my condition.  He responded kindly, but as expected had little to offer other than a name of an onc in California.  Whom we may or may not touch base with.  He seems to deal with gastric cancer generally, rather than my type of carcinoid specifically.  We will be seeing the specialist in Nashville next week on October 3.  One other note about this cancer.  It does NOT tend to metastasize to brain and lung and such the way melanoma can.  Rather, it tends to stick to the abdomen and those surrounding organs.  Whatever that is worth...

All the king's horses and all my sweet friends - While  Humpty Dumpty did not fare very well despite the help of all the king's horses and all the king's men, I am putting my pieces steadily back together in light of all the care, concern and tangible help I have received from my friends and dear ones.  I cannot begin to express how much the outpouring of your love and support have meant to me and mine.  It is real.  It is essential.  It gives me strength and hope.  Much love and thanks to each and every one of you.  I will work hard to become strong again, I promise.  Love, c


  1. Dear Celeste,

    It is so good to hear that you're home and eating, and pooping somewhat normally!!! I was afraid, among other things, that they were going to give you a temporary colostomy. Pooping the normal way is a very civilized thing to do. And I hope you start gaining lots of weight - sounds like your nutritional minders are hard at work. I remember when the docs told me I could eat again (still in the hospital), I devoured 2 breakfasts in quick fashion, and I didn't slow down for months. This is the moment to enjoy the ice cream or whatever food fantasies you might have!!

    I do hope you can avoid the chemo business - wouldn't it be great to just go back on Nivo? Just like the old days.

    On a related note, we're watching a PBS (KenBurns) documentary on the Mayo Clinic - very inspiring story we really didn't know well, even though my grandmother, living in Columbus Georgia in the 1920s, went to the Mayo for her cancer treatment....A very big deal then.

    Take care, and there's never TMI in these situations.

    Jonathan and Fran├žoise

  2. I've kept both of you close to my heart through all of this. You two have been so brave and strong through so many things!!! I kept thinking ~ Okay, what would J and F do??? Yes, I was a bit worried about how I would fare coming out of my second surgery (was unaware of my fate, during the first one!!!). A colostomy was something I considered, for sure! It has been amazing after 19 days of no food and no desire for my appetite has picked up now! B is quite impressed, so I'll keep working on that. The Mayo documentary sounds really interesting. I'll have to check that out. Your support has been real and much appreciated through this!! Much love! les