dig for the pony February

Things To Work Out

This morning the first thing on my Facebook feed was a memory from 1 year ago. It was a video I’d taken of myself at the hospital when Mom had been moved from surgery to the ICU.

Mom had just had a wedge resection of her left lung to remove a malignant tumor. We knew that following her recovery from that surgery doctors would be addressing the mass that had been found in her pancreas, but was determined to be a different type of cancer – not metastatic.

Prior to her lung surgery the surgeon had indicated it would be an easy in and out procedure. “No big deal” the surgeon said.

The reality was much different.

She spent three days in the ICU and due to over medication. We thought we were going to lose her once when she became unresponsive with shallow breathing.

Thankfully she returned home to recover. Dragging her oxygen hose all over the house, she struggled to get her strength back.  Slowly the pain in her back subsided and she was able to leave the supplemental oxygen behind.

Next it was time to deal with the elephant in the room – pancreatic cancer.

Some Months Are Worse Than Others

I hate February.

I have hated it since February 4th, 1985 when my Dad died from colon cancer.  And every February since that time, there’s been something shitty going on to reaffirm my dislike for the “F” month.

This February it’s been a couple of things.

Mom has felt exhausted, weak, shakey and pained 24-7.  She gets up, eats, takes her chemo pills and falls asleep in her chair before taking a shower and going back to bed. She eats what she can in small meals, but nothing really tastes good and knowing it will all hurt makes eating a job that must be endured, not a pleasure.  If she does stay awake it’s tough to concentrate, which is very frustrating for her.

Other than for medical appointments she doesn’t go out much now. Part of it is a lack of energy and the other part is our desire to limit her exposure to bugs that her weakened immune system could not fight off.

She did venture out last week though, to the memorial service of a friend who recently died of pancreatic cancer. It was a tough day physically and emotionally for her, but a good one too. She had suited up and showed up, not letting cancer win on that day.

I suppose the best news is that the new chemo is causing few side effects –  nothing as bad as expected. Unfortunately we don’t yet know if it’s working.

The protocol chosen for this attempt to slow the growth and spread of her cancer is one that is used for cancers of the digestive system: stomach and colon primarily. This is due to the fact that there really are not too many treatment options for pancreatic cancer short of surgery for which Mom is not a candidate.

Mom’s CA119 numbers have risen to 3600, the highest they’ve ever been. While Dr. Savage says this is normal when changing therapies, it’s damn tough not to see that as a discouraging sign. Despite this her other blood tests look good.

I’ve been trying to encourage the use of marijuana to help increase her appetite and alleviate some of her pain.

She wears a transdermal pain relief patch, supplements with oral narcotics, takes pancreatic enzymes and eats very small meals, yet is in pain all the time. I know that somewhere in her brain there’s still a stigma attached to the use of pot, but despite my own lack of use, I still push for it as I know it has helped her in the past.

Next week Mom continues on her oral chemotherapy, and then she will have a week of taking no chemo before an infusion of another chemo drug and beginning the current oral chemo again.

It will be interesting to see if she gets any of her energy back during those seven days off chemo.

I hope so. She deserves a break.

It’ll be really nice when it’s warm enough to go out on the patio to enjoy the freshly planted flowers, sniff the air and feel the warmth of the sunshine on our faces.

In Other News

In addition to Mom’s struggles, there have been a few other challenges.

My dog Brownie was diagnosed with oral squamous cell cancer.

X-rays indicate it is in her jaw bone, so next Wednesday she’ll go to a veterinary oral surgeon to remove a portion of her lower jaw in hopes of stopping the cancer’s spread. It’s an expensive surgery and the only option to save her life.  Seeing my dog Maize’s ashes in an urn on my shelf, I just couldn’t bear the idea of euthanizing another furry family member without a fight.

My husband is dealing with some medical issues that continue to be investigated, and I had a punch biopsy to see if something that’s been on my face for two years is skin cancer.

At times it is all laughable.

How can there be so much all at once? But then I wonder why I think we should be immune?

Have I mentioned…“I hate February.”

Thanking God For Another Day

In an attempt to thwart the cloud of negativity that can decent unannounced at any time, I wake up and start praying prayers of gratitude.

Beginning my day from a place of peaceful acceptance versus warrior mode seems to help every aspect of my life.

Today I thought about how in a couple of weeks my beautiful, smart, funny daughter will turn 19.

I remember bringing her home and taking her back to the hospital days later. I remember the sleepless nights and medical challenges that followed. But those memories are nothing I dwell on as I have so many more happy ones of our years together.

I also thought about how close my daughter is to her Grammy. How watching them grow together has been one of my life’s greatest joys.

And how despite having to let go of a career, the decision to move closer to my Mom when I found out I was pregnant has always been the ‘right’ decision.

I cherish being able to see my daughter grow into her own unique self, and I cherish the many, many moments in which my Mom has enveloped us both in her love.

Despite the ‘ugh’ of February and the associated struggles, spring is coming.

Time to rise to meet it.

 

 

 

 

New Chemo February 2017

Cellophane On My Lips

Taking a drink of the ice water I’d just handed her Mom said “What did you put in this?”

“Ice” I replied.

Looking at the glass in her hand she said “It feels like there’s cellophane on my lips.”

New Chemotherapy Routine

We’d just come home from the oncology office where Mom had gotten her first infusion of Oxaliplatin (trade name Eloxatin).  This drug is being used in place of Gemcidabine (Gemzar) which had stopped working.

One of the possible side effects of Oxaliplatin is cold sensitivity which can be very severe.  Some users had reported taking a drink of cold water and feeling like they couldn’t breathe because this side effect made their throat feel as though it was closing.

Mom’s one drink of ice water about one hour after her infusion gave her the sensation that she had a cold, slick coating on her lips.  It was an eye opener that led us both to wonder what would be next.

The new chemotherapy infusions of Oxaliplatin will be given every 3 weeks and take 2 to 3 hours to complete each time.  In addition to the chemo drug she receives a steroid (to help it work), Benadryl (for any possible allergic reaction) and an anti-nausea medication.

When she received it this first time she said it was sort of like being right on the verge of going under general anesthesia.  Nothing like that occurred with the Gemcidabine, so that was new for her.  We always see a lot of different patients (ages and stages), many of them sleep through their treatments.

Maybe this is why?

Additionally, she began an oral medication called Capecitabine (brand name Xeloda) 1000mg twice a day for 21 days with 7 days off before beginning another cycle.  This drug comes in 150mg and 500mg doses and if she had to pay for it out of pocket, it would be $3200 per cycle. It’s shipped overnight to her home from a special pharmacy in Florida.

Thankfully, she has good insurance!

First Week With New Meds

Mom has felt increased fatigue over the past few months. It’s the kind that she never gets rid of, no matter how much she sleeps. Sometimes is so severe that just getting up to use the bathroom leaves her winded and spent as though she’d run a marathon.

Weariness makes it really tough to plan on doing anything. Throw in a few socially unacceptable side effects and you find yourself stuck at home and waiting for your next pain pill much of the time.  It’s boring, frustrating and seemingly never-ending.

Frankly, it sucks!

Rule #1: Stay Hydrated

“Drink lots and lots of water to flush the chemo through your system.”  This is a constant reminder by all the oncology nurses.

Whenever Mom hears this she nods and does her best to comply, but you have to be awake to drink water and that isn’t happening very often.

I have given her a water bottle and the goal is to drink two of those a day, in addition to water with all meals and snacks.

Rule #2: Wash Your Hands

The oral chemo drugs are toxic, and not just to cancer.

When handling Capecitabine the warnings include: Wear gloves. Wear goggles. Wear a mask.

She’s swallowing four of those pills a day and you don’t want her to touch it?!

When I clean her bathroom I glove up, and wash my hands whenever I think of it, but it is a challenge.  I don’t know why though, considering the folks who mix up the infusions are in Hazmat suits.

Rule #3: Report all side effects.

When nothing your body is doing is normal, it’s tough to know what really qualifies as a side effect.

Truth be known, Mom could call and report something new every blessed day.

Instead she takes it all and plugs along, mentioning things to me which we mutually weigh and rationalize away.

The ‘biggies’ make her list which we take to Dr. Savage each Monday.

Where We Go From Here

Mom’s CA119 numbers were at about 2200 prior to this new chemo being administered. Her abdominal pain continues to increase and she is weary in mind and body.

The hope is that the new chemo will encourage the cancer to stop growing and not spread, despite the drugs not being the first choice in treatment of pancreatic cancer.

There are several things that can affect how long she will be on this treatment.  Most of them have to do with how far and fast her CA119 drops, but others relate to how well her body responds overall.

Her heart, liver and basically every system in her body will be taxed by this poison, making it a race to see if the chemo can get to the cancer first.

It’s still all about one day at a time, and in that there is a lesson and a bit of hope for all of us.

 

 

 

 

 

 

fart frying pan

Like A Fart In A Frying Pan

When I was growing up my Mom would say to me, “You’re like a fart in a frying pan!”

I was never quite sure how she could visualize that one, but I could tell by the tone of her voice and the look on her face, this was not meant to be a compliment.

Interestingly enough, this statement is what comes flying into my mind lately as I struggle to find focus and get things done.

Dealing With Demons

I’m almost 50 years old and I can think back over at least 40 of my years to see a pattern of behavior in myself that still exists today.

When I’m feeling overwhelmingly stressed by things that are completely out of my control, I clean and organize.

Now I know that doesn’t sound like a bad thing, but the reason I do it probably is.

Cleaning and organizing things is a way that I can focus my energies and create order out of chaos.  It’s like a psychological steam release valve for me.

The problem is that I tend to do things in such a manic way that I completely exhaust myself and never really complete a task before seeing another one that needs my attention. And until I complete the multiple tasks I’ve locked in on, I actually feel increased stress instead of alleviating it.

This is a mild form of OCD (Obsessive Compulsive Disorder).

OCD is something that runs in families. Mom has a mild form of it as do I, and my daughter has it as well.  (Surprisingly, only two of the three of us use cleaning to ease our anxiety.)

At its best, OCD can spur your psyche on to do great things.

At its worst, it can  and can be extremely debilitating causing severe depression and lead to thoughts of suicide.

Thankfully there is help and management is possible.

New Chemotherapy Added

Shifting gears a bit…

The last time Mom had her blood checked her CA119 numbers were higher than they’ve ever been.  This prompted Dr. Savage to revise her treatment plan in hopes of turning the tide once more.

Next Monday Mom will have an infusion of Gemzar (the chemotherapy drug they’ve used with success up to this point…) and then a new chemo drug (taken orally) will be added to the mix.  There are a lot of side effects listed for the new drug, and we are just praying that she doesn’t have to weather them.

Also on Monday is a trip to see her cardiologist – the guy who the last time she saw him asked her if she wanted to die – because she had gained some weight.

Needless to say she told me she didn’t see the point in going to see him, but apparently he has to see her to renew her heart medications. Cynically we both think it’s just to be able to bill insurance for the visit, but she’ll go.  Her aneurysms are still part of the equation, as is her occasional chest pain, but really who has time to worry about that stuff when you’re so busy going to chemotherapy?

In the past month Mom is visibly weaker, but still has her hair and most days, her sense of humor.

She often feels shaky and unsteady on her feet, making her decisions to forgo her walker or cane in the house that much more frightening to me, but I know she just wants to maintain some sort of normal.

Pain is constant and worse after eating.  She continues to wear Fentanyl transdermal patches and still munches on pain pills and pancreatic enzymes to keep going.  While pot is available, she tends not to use it unless she’s nauseated or needs to sleep – and then a brownie is her go-to.

I know she is frustrated and scared.  She misses the person she used to be, and worries about what is coming next.

I guess I just ‘feel’ all the time.  Day to day, moment to moment, and try to remain grateful for whatever time we have together.