CAPOX - Round #2 begins! Adjuvant treatment for adenocarcinmoma, ex-goblet cell (or GCC) and me.

Lessons from last round have been helpful!!  Demonstrated firstly in the title.  I now know that this day is but the BEGINNING, in stark contrast to this post -  Treatment #1 ~ 3 month regimen of Oxaliplatin and Capecitabine ~ is DONE!!!!!! Take that adenocarcinoma ex-goblet cell carcinoid! - where ignorance and Marinol got the better of my good sense!!!!  To ease concerns from the start ~ I am doing okay.  Here's the story:

Same routine as last.  There at 0900.  Labs drawn. White count held steady.  Hemoglobin continues to sink albeit slowly.  Saw NP, whom I like and respect.  She is straight forward and knowledgeable.  Went through the litany of the past 3 weeks.

First focus - the neuropathathies.  I explained how they started and gradually improved.  To whit, there is still soreness at my right arm at the IV site (though I think that is a paresthesia combined with an internal chemical burn from the infusion).  My fingertips remain sort of numb and continue to have the pins-and-needles, 'jingy jangy' sensation when I touch things that are cold.  Her response was that the weird response to cold was going to remain throughout this process, but should resolve once I am completely off meds.  That was new, I thought it would wax and wane.  Okay.  She also said that, yes, it was important to decrease the oxaliplatin if I still had problems with neuropathies by the time of the "next dose" so as to diminish the likelihood of them becoming permanent, but their test was whether or not I could still button a small button...or something like that.  I can.  So we left the dose alone.  In regard to the IV, current sensation and sudden burning in the middle of the last infusion, she said she would advise the nurses to slow the med infusion and boost the IV fluid rate in order to deliver the med in a consistently slower and diluted fashion.  And, yes, apply warmth from the start.

Then - on to gut and gastric pain, as well as the diarrhea I have been dealing with secondary to the capecitibine with emphasis on the symptoms over week #3.  Covering the gradually increasing lower abdominal pain with bloating to the more severe cramping pain after being OFF the drug...with even more bloating (I'm talking 6 months pregnant guys!!!  And I had just got over that as caused by my surgeries!!!), tender to touch, tender when taking a seat as the mere pressure of sitting pushes up on the gut causing pain, and pain with every step as it jars my abdomen.  All of which were slightly better on Monday...but still bloated (about 4 months prego) and tender to the least touch.  She looked at the chart and then at us, confirming my capecitibine dose of three tablets twice a day for 2 weeks.  Yep, that's it.  She indicated that very few people can complete treatment at that dose and that she felt it was particularly high for me.  B had discussed this very point with the onc when she prescribed it in our meeting before starting treatment.  Body surface area as the formula for determining dosage is often used in cancer drugs and capecitibine in particular, rather than the more direct mg/kg method, and can be problematic as noted in this report:  Body surface area formulae: an alarming ambiguity  In my case, though I am tall (5' 9") I am not wide, weighing around 128 pounds currently.  Additionally, apparently, you are NOT supposed to endure abdominal pain the entire time!  She recommended and sent in a scrip for levsin to use should I experience anymore of the severe cramping pain, which has turned out to be a good thing, I'll get to later.  At first she was adamant that I decrease my dose to 2 pills in the am and 3 at night, noting that we could even go down to 2 and 2 if we needed to.  Then, on pondering the chart and probably realizing that the pharmacy had already sent me the 3 pill bid dose for this round, told us to take the 3 pills twice daily starting Tuesday and see how things go.  If things start heading in a bad direction, call the office and we will lower the dose as discussed.  OK.  On to the infusion room ~

Things were in their usual jumble of recliners, straight chairs, and pitiful occupants.  We were not greeted as warmly as last time, and were instead told, "Oh, just find a place.  I think there are some seats in the back." With a vague wave in that direction.  Nurses were not as cheery and spiffed up as they seemed to be last time.  Camaraderie was not as evident and the nurse to patient ratio was certainly diminished.  Hmm...  No worries.  After a bit, a nurse that I can only describe as lack luster wandered over and with no other preamble asked where I wanted my IV started.  I told her it had been in the right last time so we should probably switch, but she could look and see what looked best to here.  While looking at my arms in a disinterested sort of way, she asks the inane question, "Have any of these been stuck?"  I replied, "Just a bit, given a recent 3 week hospital stay for 2 abdominal surgeries and a 2 1/2 year trial of nivo."  There was no response to that.  She chose her spot and started the IV to my left forearm.  Not terribly well, mind you.  Too much digging, such that it actually burned (read leaked!!!) from the start.  I mention this to her.  She says, "So, you want me to restart it before your infusion?  I mean, it's in."  I told her I realized that and was just letting her know.  Geeze.  Y'all know I do not care at all what somebody looks like, but so you might as well get this in living color:  Pasty face with too much dark foundation.  Shapely, cute girl in late 20's early 30's.Big wedding ring. Over bleached long yellow hair and significant dark roots, looking a bit worse for wear.  Clear that it is too often flat ironed or curled in good a old southern style that is too big and too fixed to be the super model 'beachy waves' that are probably the goal, though today I am not sure it has been combed.  She smiled exactly zero times during all the hours we were there.  Spending most of her time propped on her elbow, chewing gum and frowning, while staring at her computer screen.  Easily turning a deaf ear to a cacophony of infusion pumps alarming in her area, including mine.  She did scrounge up an ancient, small heating pad for my arm, which helped as I had only one of my hand heating pads and it was a bit too small for the job.

I took a 5mg marinol and ate breakfast at home before going in. I snacked on tea, crackers and a banana B brought in for me.  The nice church people were there with their water, chips and sammies.  It all went pretty well for about 2 hours.  The warmth helped.  But, during the entire oxaliplatin infusion, my hand (below the IV) burned liked fire. Due to increasing neuropathies, as I developed the pins and needles with pain (not terrible...but still) to my fingers and feet within the first hour, but also due, I suspect, to the fact that the IV leaked all along.  At the 2 hour mark it was hurting so much I checked the site myself...bleached blonde had NEVER done so...and noted significant new swelling at the site.  With my nurse nowhere in sight, I waved over the nurse I had last time (Tall, noted to have smiled many times to various people on this visit as well as last, pixie cut, dark with a few threads of grey, a bit androgynous, mid-30's, smart and efficient.) who after a methodical exam said, "Oh, dear."  Stopped the infusion.  Flushed the site...which burned...but noted that it still had a good blood return.  (All consistent with my diagnosis of a leaking IV!!! BTW!!!)  She consulted with a very good nurse  (possibly the charge nurse ?) whom I had noted had continued to work in a manner consistent with the one she demonstrated during our the last visit, as did tall girl.  I could see her adamant negative head shake across the room.  Tall lady rapidly returned, removed the IV, started a new one efficiently, and we were rolling again.  Nausea was there like a wall as before.  Just a sudden presence.  However, having had the mairnol in the morning, it was not as bad as last time.  I took another there. Then, after observing tall girl give a report of my situation to blonde girl, blonde girl stomped over and without a word started mashing buttons on the pumps.  No explanation.  Upon her departure, B noted that she had changed the setting so that the med infusion rate was increased and IV fluids decreased so that I received the entire second 'half' of my infusion in 1 hour!  Guess she was ready for us to leave.  Yes.  It burned more.  Yes.  My Medical Meerkat was displeased.  I managed through it.  Other than asking me to help start the tape removal, blond girl had nothing to say when I was done.  Some people ain't right.  Oh, well...

As to a cause for my perceived difference in attitude noted in the unit throughout?  While I clearly do not know, I do have a theory.  They may have been working short because coworkers were ill.  Perhaps they were down because of some loss.  Though they seemed happy enough when chatting with each other about a party they were going to attend, who all was going, what was to be served.  "What's this business about duck?  Gross!!  Where's the hot dogs and burgers?"  Who knows?  But.  While Medical Meerkat watches me, I take in the scene.  Last infusion, I noted three folks with tags and white jackets - in a sea of blue scrubs - inscribed with the name and logo of the Sarah Cannon Cancer Center out of Nashville, with which Memorial is a partner - going room to room with clip boards and such.  I presumed then, that perhaps Memorial was taking part in a trial new to them and folks from Sarah Cannon were there to mentor them on the protocol.  No Sarah Cannon peeps were present this time and now it seems more likely that they were completing an inspection of some sort for which the staff was on their P's and Q's!!!

Made it home okay.  Quite nauseous with cramping during the trip.  Am ever so grateful that I do not have to travel all the way from Nashville for this!!!  Washed my face.  Changed into baggy lounge pants and a tee...a number of which I am going to BURN once this ordeal is done!!!  Took a levsin.  Went to bed.  B brought me a marinol when it was next due.  Slept until 6:30.  Vegged out in the recliner.  Ate some chicken soup with rice.  Then 4 doughnuts.  B was happy!  HA!  Back to bed!!!

Poor fellow.  Monday was his birthday.  I told him I was giving him the greatest gift ever ~ my undivided attention for hours and hours!!!  Ruthie's joke really, as a response I could give her brother, when I told her I felt bad that he had to spend his special day in a treatment room with puke-alicious me!  I did make him a Birthday Cream Cheese CAKE Pie last week to celebrate!!

The boy loves anything....

... made with Eagle Brand! 

He even got to lick the can!!  BLECH!  AND, I did manage to surprise him yesterday with some bow ties I conjured him when he wasn't paying very close attention to my sewing efforts!!!

He loves him some color, too!  I fear the one on the left made from a scrap of an African Wax print, was a little too fragile for the purpose, so I doubt it will last too long, but it should be fun for a bit.

I slept pretty well through the night.  This morning, despite being incredibly tired and somewhat nauseated, my belly pain is ever so much better than it has been and the swelling is gone!  Don't know if that is simply due to more time passing from my last capecitebine dose, the levsin, the pre-med decadron and/or aprepitant I get with my infusion, or possible anti-inflammatory properties of the Marinol that I restarted, having stopped it when I stopped taking the capecitibine.  Whatever the cause, I am thankful.  We will see what happens next, because after getting up around 0600 this morning, and  some tea, banana and toast with a dash of marinol and pepcid, there was this....

Capecitidine, here we go!!!  YUM!!!

We be drivin' Miss Daisy.  It has taken me all day to do very little.  Trying to resign myself to my zombie-fied state.  But - we be drivin', Bentie.  We be driv'n!!! - les