Capecitibine "WOKE" my Pollyanna A$$!

As planned, I started my first dose of my last round of capecitibine (say that five times fast!!) last night.  B offered/recommended that I take a marinol with it.  "Seriously," I objected, "how bad can the first dose be??  I'm heading to bed.  No thanks.  Don't need it."

Well, fast forward to 1 am this morning and I am WOKE!!  Alternating waves of feeling overheated and sweating versus shivering with cold wrenched me from sleep as the wall of nausea hit!!!   Poor B fetched the marinol, gave me a sweet back rub, and I faded back to sleep.  Feeling much better this morning, I shared this with a bestie, who you'd think would have my back, right?????

Hmmm.....

"Smh at u, how many times we gotta talk about listening to Brent!"

Bahahaha!!!  Yeah, she's still got my back although she is, literally, B's twin.  Same birthday, no joke!  My peeps are experts at keeping it real!  When they're right they're right.  This morning, I was good and took my marinol as directed. 

My day is sunny and bright, a bit warmer than expected.  My marinol hazy self trimmed my overgrown lavender (hope it grows back as my internet search said it would) and Knock Out Roses in preparation for spring. 

Hope springs eternal.  Thanks B and Tam Bo.  I will listen the first go round....next time.  I promise.  love, les

CAPOX - Final round, for ex-goblet cell adenocarcinoma of the appendix

At the oncologist's office bright and early this morning - feeling pretty well.  Less tired.  No significant stomach issues.  Fingers still numb.  Lots of numbness and weird sensations radiating up my arms.  Feet all jingy jangy with the clown shoe sensation back in place since last night.  So weird.  Anyhow, labs were okay.  WBC dropped back down to 4.3.  Hemoglobin pretty good at 12.5.  Met with the NP initially.  Shared the events of the past two weeks to which she promptly replied that it seemed to her additional oxaliplatin would be unwise; basing that recommendation on the same facts I reported yesterday.  1. This is a treatment that may not be doing much for me in the first place.  2.  The neuropathies I've been dealing with have a real chance of becoming permanent if we continue.  We assured her that we were of the same mind.  The oncologist joined us to complete the discussion. Conclusion?  No more oxaliplatin for me.  We agreed that I can probably tolerate the final 2 weeks of the oral medication (capecitibine), knowing that I can manipulate the dosage if side effects (diarrhea, cramping and weird skin dryness/rashes) become unmanageable.  Given the cessation of the oxaliplatin the remaining neuropathies should gradually resolve.  A recheck is  scheduled for January 7.

I'm okay with this.  It feels a bit weird to bail.  But, I don't want to put my ability to function -  as an NP, palpating little tummies and completing procedures as needed, as a sewist, cook, runner, and all the other things that require sensation of the hands and feet - in jeopardy if I can avoid it.  So, there you go.  I started my last 2 weeks of capecitibine just now.  Hopefully, it won't be too difficult.  Whatever it IS, it will soon be DONE and I will be soooooooooooooooooooo glad!!!

Thanks to all of you who have helped carry me through this decision making process.  - love, les

It's been rough, but CAPOX #3 = DONE!

Whew!  It's been rough around here since my oxaliplatin infusion on the 3rd, which due to my symptoms on the prior round had been pushed back a week, placing it in the middle of my two weeks of oral capecitibine.  Neuropathies, rather horrible diarrhea, and general miserableness have been in full swing.  B was a trooper and took great care of me.  Over the past 4 or 5 days things have improved as the oxaliplatin effects diminished and I began my week "off" the capecitibine.  I've been able to do a few chores about the house and even help B with a little yard work on a warmer day.  For the past couple of days I've also managed to complete my big 10 minutes on the elliptical!!  So there's that!

My dear ones have stepped up to comfort and entertain my limp self.  Don dropped by for a chat.  Kay was over bearing yummy lemon cookies for a good talk  and tea.  Friends sent encouraging texts and sweet notes.  And my Tam Bo made me laugh as only she can with this -

Who would have imagined that such things existed???  And Lord knows they were more than appropriate this round!!!  That girl will do anything to make me smile!  Thanks to all of you!!

The neuropathies were particularly intense this round despite the dose reduction and failing to complete the entire infusion.  I think I left that little factoid out when reporting my last ta dah.  Anyhow, the pain and nausea were so bad during the infusion, that when toward the end my IV infiltrated, the nurses declined to restart it and just called it a day.  I was too sick to argue and B was all for letting it go.  At any rate, even with that diminished dose, I developed what are considered Grade III neuropathies.  Instead of my fingers having the electric "jingy jangy" sensations only with cold, that feeling was produced whenever I touched anything - no matter how gently!  General body aches and burning to hands, arms and feet were worse than ever and were persistent until just a few days ago.  Now they are diminished and intermittent.  Then there was the fact that I couldn't make my hands tear toilet paper during the first 24 hours!  Even my lips have been doing weird numbness/tingling things which continues today.  It's been interesting to try to sew a little these past two days.  I'll pick up a pin to secure my seams, only to realize I have no pin!!!  I have had more problems with my feet than on prior infusions.  While is it getting better, I've felt as though I am walking in over sized clown shoes.  I asked B if I was walking weird and he said I didn't appear to be.  My reflexes (Yes - my Medical Meerkat checks those things though my doc has not!) have been fine.  Oh, well ~ I am mostly dealing with numbness in my fingers at this point.

With all that, I fear that I cannot tolerate the "final dose" of oxaliplatin I am scheduled for Monday.  We were advised during our consultation at Vanderbilt that permanent nerve damage is avoided by postponing the oxaliplatin dose and implementing a dose reduction for Grade II symptoms.  For Grade III neuropathies, which is what we feel I've experienced this time, cessation of the drug is indicated.  Additionally, given how ill I've been, I honestly don't know that I could will myself to embark on another round.  To admit that makes me feel like a wimp and a quitter, but I just don't think I can do it.  I know there are worse treatments out there.  I feel so very badly for folks who are enduring those!!!  But, given what I've experienced, the fact that I could have settled for no additional treatment other than the surgery, and the sad reality that we are not certain this adjuvant therapy is of any benefit to me - I don't think I can face more oxaliplatin.  I have an appointment for labs, a visit with the oncologist, and the last infusion first thing Monday morning, so we will discuss all of this with her then and see what she recommends.  I do feel that I can complete the final two weeks of oral capecitibine as planned. 

For the rest of the day, I will work on some secret sewing!!!

Super psyched about that pocket.  I know!  But...it's the little things!

Happy Sunday to you and yours! - les

SCARS are more than skin deep. The love that sees me through....

On the heels of yesterday's post, this morning I saw this amazing interview with Sarah Hyland that resonated perfectly with what I have been feeling ~

Sarah Hyland on Her Two Kidney Transplants | SELF

In part, she says, "Scars are scars.  They are little tally marks of what you've been through as a human being. ... When a family member gives you a second chance at life, and it fails, it almost feels like it's your fault.  And it's not.  But it does."

I feel so much of what she says intensely.  I am ashamed to have cancer ~ AGAIN!  I am so sorry for having put my family and dear ones through all this ~ AGAIN!!!  I am proud, and decidedly pissed, to have over 20 surgical scars and vitiligo.  It is hard to feel pretty when so much has been changed about you.  It is hard to feel strong when so much has been removed from your control.  It is hard to feel deserving of love from dear ones when so much suffering and work and sacrifice has been forced upon them - because of you and your weakness.

I have rambled on, and been inspired by many, when thinking about this over the years:

SCARS - More than skin deep

And yet, when checking my phone this morning - there was this:

"Good morning Wonder Woman. Sorry for the early text.  Heard this song and it made me think of you."   Lauren Daigle - Look Up Child

My dear TL!!!  Your text brought light and tears and love.  And I am thankful.

I don't know that this meandering missive really has a point other than honesty and the hope that love can provide.  I believe that shared truths make us stronger.  And the love and kindness that I am given daily, by so many, will see me through.

love, les

Sunshine in a Russian Novel

IF a Cancer Peep is extremely lucky, as death brings a rapid end for far too many, their life becomes something of a Russian novel.  There is pain and misery.  The landscape of endless doctor visits, scans, laboratories, and treatment rooms is cold and bleak.  Hours passed are long, tedious, and boring.  Dinners are bland.  Portions small and unappetizing.  Characters are unduly complicated, insisting upon actions that cause decidedly unpleasant side effects. Names are over long, difficult to pronounce, containing far too many consonants. The necessary narcissism of the protagonist negates their ability to participate in the lives of others, leading to isolation and a narrow, mean existence. Light, warmth, joy, color, and laughter are infrequent, distant, removed.  Sadness becomes pervasive.  Overall, life with cancer, or in a Russian novel, is a daunting effort - from the start.  Who among us has even begun War and Peace?  Much less finished it?  Twice?

As invalid invalids, [That first as: adjective - without validity; null; void.  The second as:  noun - sick person; made weak by illness or injury.]  Cancer Peeps suffer many casualties beyond their health.  Their job, their social circles, their identity.  The work to maintain a relationship with a Cancer Peep is just too hard, too distant, too complicated, too depressing, too great a mirror reflecting the uncontrolled nature of life and the certain conclusion of death, for many.  Abandonment by those believed to be bound to the Cancer Peep by love, loyalty, or even obligation, is one more shock in their already broken existence.

I have experienced those losses.  But, lucky bug that I am, I have been fortunate enough to walk that long, cold road, lined with dirty snow and debris blown by the harsh wind, the collar of my thin, worn coat turned up against it - TWICE!  The reality of being nothing to those you thought valued you highly, wounds in ways that can break your soul, but if survived and a bit of distance is afforded, you realize that those who would abandon you in your time of greatest need, were never there for you in the first place.  YOU were there for them.

It is easy to focus on such pain and abandonment.  Lord knows, lucky Cancer Peeps have plenty of time alone with their dismal thoughts.  Given the perverse nature of man, injustices and insults suffered tend to affect our spirit more than any acts of kindness and love if we are not careful.  To that end, I have worked to remember the reality of relationships that failed me, rather than the idea of them that I created.  I actively choose to prize the beauty of those dear ones who have remained loyal, true and kind through all my struggles and limited ability to participate in THEIR lives!  And I am blessed.  Blessed with dear ones near and far.  Blessed with those who see me.  Blessed by those who not only ask how I am, but then insist on listening to my litany of complaints, cheer me on and lift me up.  It is a rare gift.  Almost 4 months (or 15 years, depending on how you like to count) of misery in - my dear ones are not backing down.

Just this week, I received an entire package of sunshine. Apropos of nothing - and everything.

Fun, practical, useful, comforting - love - in the form of sunshine.

My dear sweet Connie.  13 years my mentor, leader and friend.  The kind of woman I hope to be when I grow up, knowing I never shall possess your unflappable grace, gentleness, or quiet strength.  Your example has meant more to me than you will ever know.  Your lovely yellow rays pierced my drab and dreary Russian novella.  Making me smile.  Making me believe in myself, and love, and spring.  Thank you, my friend. ~ celeste

Smack Down!! ~ CAPOX #3 and me

Tried to get this written yesterday, but it was not possible.  In fact, at one point as I was reading some of my correspondence, B said, "I hope you're not going to try to answer that just now," with clear concern that any response I might make would be less than cogent to say the least. We'll see how I do today~

As you may recall, my scheduled infusion of oxaliplatin for Monday a week ago, was postponed due to significant continued neuropathy and a white count of 3.9.  As reported Sunday, despite all that, I did restart the capecitibine as planned, added acetyl-L-carnitine, carried on with my exercise, and spent the week feeling pretty well.  When back to the office this past Monday, I figured this go round would come out decidedly better.  My neuropathies were much improved.  There were discreet points on my fingertips that still felt numb, but function was pretty much normal.  I attribute the improvement more to time, than anything else, but if the carnitine and exercise played a role - I'll take it.  I knew I was physically stronger than I have been during any of my other infusions.  I am certainly in a much better place nutritionally and have been maintaining a weight of 130 pounds.  I have been dealing with a great deal of redness and burning to my palms and soles, but the onc and I agreed that that was due to the capecitibine, not neuropathies related to the oxaliplatin.  My white count was only up to 4.1, but she was okay with that. My hgb was 12 and platelets 'good'.   With all that, we were a go.  So, with all my personal improvements, the oxaliplation at a 20% dose reduction and administered over 3 hours - this has to go better, right????

Had a good nurse, though Uninterested One, was still there, unkempt and smacking her gum as usual, while slumped in front of her computer.  Never spied a smile.  Good Nurse, got the IV started first stick with input welcomed from the patient.  We applied a heating pad from home at the start of the infusion.  But, as before, the infusion began burning before we got to the oxaliplatin.  The routine is a pre-dose of decadron, followed by aprepitant (a long acting anti-nausea medicine) then the oxaliplatin infusion.  This time I had the presence of mind to look it up and, yes!  Aprepitant itself can cause irritation to the veins.  So that answers that.  Happened to be seated next to Roo's second grade teacher receiving her final adjuvant chemo dose for recently diagnosed breast cancer. Ironically, just weeks ago when Roo was over for one of her fashion photo shoots, she mentioned this dear teacher, exclaiming, "Ms. M. saved my life!!!"  And indeed she had (and mine as well)!!! Within weeks of meeting Miss Rosie Roo, Ms. M. realized busy body Rose needed to busy her mind so as to stay out of trouble.  She promptly had her tested and placed in the school's gifted program.  Never thinking she would remember us, I still wanted this sweet, remarkable lady to know how much she had meant to Rose and our family.  But, before I could even begin, she recognized us at once, not only remembering Rose very clearly, with plenty of cute Roo stories, she shared that she has a 6 year old granddaughter who reminds her of Rose daily!!!  She was very pleased to hear Rose was teaching higher math, as her interest and ability in numbers, math, and puzzles were what had so impressed Ms. M. from the start.

Things faded fast after that exchange.  Though I had taken Marinol 5mg before leaving the house as we had done before, the nausea was worse than ever, necessitating two more doses during the infusion in order to barely manage it.  It was touch and go.  The neuropathies returned acutely, to a much greater degree than before, with incredible pain running from the infusion site up my entire arm.  Such that the lightest touch along my arm was excruciating.  After an arrival time of 0900, we made it home around 3:30.  Straight to bed with another dose of marinol and ativan.  With that I was out until 6:30 pm.  Woke up feeling kind of okay.  Managed to take a bit of broth from chicken noodle soup.  That went south quickly.  I tried resting my head on the table, but on trying to get to the bathroom, a mere 8 feet away, I fainted right in the floor.  Poor B!  We are both sure it was due to hypotension from all the meds combined with a vasovagal response with the nausea.  Managed to faint leaning against B in that bathroom.  We made it to the bathroom off the bedroom and repeated the process.  Finally made it to bed and slept through most of the night.

Yesterday, I barely remember.  Lots of drugs.  Nausea.  As before, I developed a really bad headache in the middle of the infusion.  I don't remember if I mentioned it previously, as I wasn't sure if it was related, but now I am.  It is a bit better today, as are the neuropathies, though they are still very significant, but something can brush against my right arm without throwing me into a fit!  We have tried to carry on with the scheduled capecitibine, though we did skip the dose Monday evening, and another this morning as I am dealing with cramping and diarrhea that I have now treated with immodium.  So, there you have it. My CAPOX smack down.

We will see how it goes.  B thinks it is unlikely that I can, or should, have any additional doses of oxaliplatin.  Only yesterday was I able to tear off a piece of toilet paper with my right hand.  That indicates a Grade III neuropathy even at the decreased dose.

Through all of this, I am vividly aware that there are those suffering through far more difficult regimens.  Plenty are having to endure FOLFOX and FOLFIRI - the STRONG version of CAPOX!!!  And there are a multitude of even more horrible tortures folks embark upon to try to save their lives.  While immunotherapy was not a walk in the park, and many ratties deal with more serious side effects from that treatment than I did, this chemo crap makes me miss it!!!

Thanks for the continued love and good wishes.  It takes a village.  I am blessed to have mine.  - c

CAPOX update - One week into Round 3 (oxaliplatin and capecitibine) as adjuvant for Ex-goblet cell adenocarcinoma of the appendix and an explanation of ~ Why the neuropthies, Man?????

As reported here, I did not get my scheduled oxaliplatin infusion Monday.  I did however, restart my oral capecitibine at 1 tab in the morning and two in the evening, after 3 tabs twice daily had caused stomach irritation to the point that I had to go down to 1 tab twice a day.  It has gone pretty well.  Some stomach cramping and large loose stools (4-5 per day) but certainly manageable compared to where I was.  My conjunctivitis has revved up again, though I am managing that with moisturizing drops.  Burning to palms has begun off and on, and the burning to the soles of my feet has become more persistent.  Skin stuff, the development of scattered red and brown spots, has continued though some of those that developed at the start have peeled off!  What the tub?

Anyhow, I've felt pretty well this week and since I wasn't knocked on my butt by the oxaliplatin I tried to make the most of it.  I've done research for spring planting.  Destruction of existing beds.  Salvaging plants.  The building of new beds.  What flowers to mix with veggies in a new "kitchen garden" I'm planning.  I've done a good bit of sewing and blogging.  Completing my TWO "sew frosting" challenges was so much fun with Roo.  I've researched fabric shopping in Atlanta.  Which may be a most agreeable first ta dah out of the box - that is my current condition!  A weekend trip we could make come spring!!!  B indulged me and we watched the BBC Sherlock mini series with Cumberbatch and Freeman for fun.  And, since I was feeling pretty good, I upped my exercise efforts.

I'll come back to that, but first, a little background.  When you consider neuropathies caused by CAPOX - here's the deal ~  There are two components to the condition when you are on this regimen.  Physiologically, nerves have several parts.  One is the nerve cell, the neuron.  Or if in a collection - ganglia.  These groups of neurons serve as our communication centers.  In the sensory nervous system, these nerves make up fibers that reach out into the surface tissues - the nerve endings that go to the surface of your body...like your fingertips, etc...and allow input from the skin to be registered as hot, cold, rough, smooth, pressure, pain, etc.  That sensation is transmitted back to the ganglia to connections via the spinal cord whose fibers then funnel this info to the brain.  The intel is then transmitted to the cortex of the brain and you go, "Whoa, this tea is hot!!!"  There is a complimentary motor system that sends messages to and from the muscle cells, but as it is not usually affected by CAPOX, we'll leave that be.  NOW ~ the neuropathy CAPOX causes is due to the oxaliplatin.  Oxaliplatin is made of two components - oxalate and a molecule containing platinum.  The neuropathy caused by oxaliplatin is unique in that it also has two parts related to its two constituents.  The oxalate makes the nerve fiber (the axon) dysfunction and stay in an excited state.  This is what causes the cold sensitivity - the extreme jingy jangy sensation that occurs when I touch or drink anything cold.  While unpleasant, it does not produce permanent damage and should gradually resolve on stopping treatment.  The platinum enters the neurons (the cell bodies in the ganglia) and causes damage to their mitochondria (structures within all cells that provide energy for cellular function)  which then causes the cell body to fail, malfunction, and produce the classic numbness and weird sensitivity that are paresthesias, also called neuropathies.  This process can lead to permanent injury and even death of the affected neuron causing loss of function of the nerve fibers that are connected to it.  Interestingly, this effect is directly correlated with the total amount of oxaliplatin given as well as the highest concentration in a given moment (the peak level of the medicine in the body) that the nerve cells are exposed to.  Therefore, if the dose is large, and/or given rapidly, the level of injury is greater.  Even a slowing of the administration can make a large dose more tolerable.  The neurons can recover, unless the cumulative damage or peak damage is too great.  Therefore, when folks are having neuropathies of Grade 2 or higher...the patient may need to delay additional doses, take the oxliplatin but at a reduced dose, and/or have the dose administered over a longer period of time.  If neuropathies do not improve with these interventions, then the patient may not be able to have any further doses of oxaliplatin at all.

Since the brain is FILLED with neurons, you might ask, "How do these neurons - basically the brain itself - avoid damage and death when you are given oxaliplatin?"  I have to thank heaven for my blood brain barrier!!!!  The BBB is a physical membrane that helps protect the brain from large molecules...in this instance...oxliplatin.  Now, if you have a brain tumor, the blood brain barrier can make getting appropriate treatment to the area difficult.  But, in my current condition, the BBB provides protection.  Thankfully, when I NEEDED treatment to a brain tumor, immunotherapy (the Opdivo I took for 2 1/2 years in my melanoma trial) served me very well!!  BECAUSE, when immunotherapy is given, it doesn't kill the melanoma on its own; unlike what we are hoping CAPOX is doing to any random adenocarcinoma cells I may have floating around!!!  Opdivo takes the brakes off the immune system that melanoma itself has placed upon it, while simultaneously triggering t cells the patient already has, to gear up and kill the melanoma they can now suddenly 'see' sitting right before them!   AND as I wrote a million times before local oncs could grasp this principle:  Yep! Immunotherapy can work in the brain...  But, back to the here and now...

Given those facts and my condition, my onc preferred to hold my oxaliplatin last week and recommended I start taking alpha lipoic acid, a nutritional supplement, as it could help resolve my neuropathies.  On the way home, my dutiful caretaker purchased a bottle for 20 bucks and I started it.  However, my Medical Meerkat, One Dwarf, and researcher in chief, could find no evidence whatsoever, that it did any good at all!  He did find some data that acetyl-L-carnitine, the stuff you get from eating a steak, could be beneficial.  After notifying my onc, and gaining her blessing, I am now taking that. It seems to me, based on Meerkat reporting, exercise has more benefit than anything else, so...like the good patient I am, if exercise works...I'll do that!!!  To that end, here's a text exchange I had with one of my besties ~ 

Me:  "I wore myself out yesterday and day prior.  B told me research showed that the only thing that REALLY helps neuropathies was exercise.  (The thing we got from the nutrition store per my onc has ZERO scientific proof of working...many papers...and yes, B sent them to the onc!!!) so B took me off it because, while it doesn't help the neuropathy, it does cause nausea.  Anyhow, I did 1.5 miles yesterday and the day prior on the elliptical and upped my sit-ups, push ups, etc.  Today...my body hurts!!!  Ha!  B said time for a day off.  When I told him why I did it...he just looked at me like I'm nutters and said...they mean take a walk...not kill yourself!!  😜"

Her response:  "Once again HE IS RIGHT!!   I'm SMH at u!"

Today we prepped for a very un-fun, one week va-cay.   It is not somewhere we want to go.  The scenery will be drab.  The food will suck.  Putrescence will prevail.  It will cost a fortune.  But, go we must, knowing the requirements of life (laundry, groceries, basic chores and ADL's) will not disappear just because!  So ~ today we prep.  Tomorrow we will see what happens.

Without failing to notice, there is beauty still....

Much love, c