Happy Mother's Day

Dear Mom

Last year at this time you’d just began your first round of chemotherapy and we had no idea if it would work. It felt as though it would be our last Mother’s Day together.

Now here we are, 10 days after our fabulously relaxing trip to the beach and looking into retirement living options with Dr. Savage’s blessing.

It has been 16 months we learned of your pancreatic tumor and there have been many, many painful, exhausting days for you. But through it all you manage to smile and still worry about others. You lack selfishness and continue to try to think of others and  be of service when possible.

It’s incredible.

Through your struggles I witness God’s grace every day. I also feel my love for you grow, even when I thought it couldn’t get any bigger.

While there’s never any assurance we’ll have another day together, I have faith that we are doing the right things with the ones we have been given.

I never have regrets about spending the day with you, and I always look forward to talking with you on the phone each night – even if I’ve just seen you hours before.

I also never feel resentful about helping you with projects big and small, and I feel honored to be able to help you navigate the challenges associated with your cancer treatment.

This Mother’s Day I actually feel more peaceful and optimistic than I did last year. Despite a terrible diagnosis, you are an amazing example of faith in action.

I celebrate the warm, funny, gentle, bright, graceful soul that I know you to be and I look forward to where your journey will take us next.

Happy Mother’s Day dearest friend and lifetime love.

I love your spirit and I’m proud to be your daugher.

 

 

 

 

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dig for the pony white

Quiet Chaos

Driving home the other night tears started to stream down my face.

A spirit crushing, transient thought had captured my heart unexpectedly.

While Mom is preparing to die, I’m simultaneously required to prepare to live without her.

It all feels surreal.

In the last few weeks whenever I visit with Mom she’s making lists of stuff to give away or handing me a bag of things I need to take home.  As we move from room to room in her house conversationally we dart from one subject to the other. But she almost always comes back to the question: “Do you want this?”

I don’t want any “thing”.

As Mom mentally and physically mucks out her closets, I consider hiding in mine. It’s did that when I was a kid and I felt frightened or overwhelmed.

The house I grew up in was built in 1950 and had these extra deep, raised closets with oak floors and drawers underneath. The closet in my bedroom was my sanctuary. One half was for my clothes, and the other became my hideaway. A place I felt safe.

Right now there are no closets in which to hide.

It’s a powerless feeling, yet somehow I’m finding a way to make peace with my discomfort. Reluctantly growing through it.

Break From Chemo

The two weeks off from infusion treatments came at a good time for Mom.

The toxic mix has given her the Tijuana two-step after every meal.

Over the counter anti-diarrheals don’t really touch it, so we called the Oncology office for something a bit stronger. They were quick to call in a script that is helping, but eating small meals of low fat foods is always important.

Mouth sores also appeared after the 4th week of this new chemo regimen, but they seem to have subsided with no further chemo this week.

Fatigue and weakness are constant, but not as bad as a few weeks ago without steroids being in the mix.

Weight loss continues.  It’s part of the disease process, however not being interested in eating because it often hurts to do so or has her in the bathroom for the day, are probably as much to blame.

We picked up some protein drinks that are tolerable if blended with ice. Almond cookies found at Grocery Outlet for .99 a box are a big hit, as are Trader Joe’s artichokes and tapioca pudding.

If there’s anything good about having cancer, it’s that you get to eat anything you want!

May 1st I’m driving us to the beach where we’ll stay in an oceanfront house for a couple of nights.  The weather is looking like it might even be sunny while we are there.

We’ll watch the ocean, sleep in the same bed, look through boxes of family photos and drink from those little liquor bottles they give you on the airlines.

We are both looking forward to getting away.

Mowing In Circles

Last weekend I was on my lawn tractor mowing what we laughingly call our lawn. (Moles and a dachshund who is an excavation hobbyist have produced a rural vista akin to Mars, yet it somehow still needs human attention.)

I usually do the edges and then work my way inward using straight lines and right angles, but this time I was going in circles.

I would start a section and for no apparent reason start to veer right.

Then I started making figure 8’s in the high grass.

Occasionally I’d look over my shoulder and see a section I missed and take a hard left to go back to it to knock it down. The entire half-acre was done this way.

As I finished the job I realized that my mowing technique now reflects my current state of mind.

While I can get things done, I see no linear path to accomplishing each task and I’m easily distracted. Often feeling like I’m running around in circles.

Mom feels that way too.

And neither of us have any real idea when this might change.

 

dig for the pony nowhere to run

Nowhere To Run

One of my favorite songs is Nowhere to Run by Martha and the Vandellas.

It comes to mind frequently these days.

Earlier this week my sister was in town. She and her family drove 11 hours and were here for 2 and a half days. Selfishly I thought to myself: “It’s not enough.”

I feel sorry for my sister as I know she feels that way too. While we laugh our way through the sorrow and fear, there’s also this desperate need to connect and hold on.

Despite cancer’s devastating physical effects, the disease has brought all three of us to a very good place in our mutual relationship.

Stripped of the illusion of “all the time in the world”, regrets have been shared and apologies given.  Leaving only forgiveness, understanding and love.

Monday

We met with Dr. Savage who while not pessimistic, was not as upbeat as I’ve seen her during the last six months. During the visit the doctor seemed to put off the MRI results to the last possible moment.

“The MRI shows growth of the tumor” she said. Not a surprise, but still tough to hear.

“Did it bring friends, or is it still flying solo?” I asked.

“It’s still a single tumor, but the CA119 numbers going up indicate it may be moving elsewhere and we just can’t see it on the MRI.”  The labs had indicated a 100 point rise, which is much less than usual, but still rising after one round of new chemo drugs.

I asked further questions regarding the continuation of chemotherapy treatment, the possibility of radiation and clinical trials for immunotherapy. She answered them, but all of it was as uncertain as the pancreatic cancer itself.

We left the oncology office that day all feeling like we’d been smacked hard and were just managing to remain on our feet.

Mom had been having really bad days during the previous week. Very pained with incredible increased weakness.

The thought of another round of chemo was tough for her to take, but she vowed to continue.

Confused by her fatigue and weakness Dr.Savage asked her if she was still taking her steroids and pain meds on a 4 hour schedule? The answer was “no”.   She had run out of Prednisone; a steroid that boosts the effects of both the pain killers and the chemo, and hadn’t been taking it for weeks. The pain meds… she forgets.

So at least with this knowledge a new plan could be forged to attempt to give Mom more energy and less pain.

In addition to the Fentanyl patch which is worn continuously to deliver narcotic relief, oral pain med (Norco) to be taken every 4 hours on a schedule with marijuana as desired for relaxation, pain management and sleep. Prednisone 20mg once a day to give an energy boost and help the other drugs to work.

Tuesday

Tuesday is chemotherapy day. Every attempt is made to schedule at least two weeks in advance; the same day and time if possible for weekly treatments.

Following her 4 hour chemo infusion of Irinotecan, Leucovorin, and Fluorouracil (5-FU)  love the abbreviation of that last one – we took her home to rest. This combination of drugs is the oldest protocol for treatment of pancreatic cancer, and having tried all the others, the last chemotherapy routine available.

In addition to the chemo drugs, she is given Atropine to reduce cramping of her gut caused by one of the drugs (this dries out her mouth almost immediately, and slows the cramping over time), Benadryl (to reduce the likelihood of an allergic reaction) and steroids to help it all work.

The first hours after chemo Mom is exhausted, yet has trouble sleeping. That’s when the pot seems to do the most good in combination with pain and anti-nausea meds.

Sometimes I marvel at the chemical cocktail she takes in over the course of each day. I simultaneously despise the need for it and love that it can help her.

Into The Weekend

Now at the end of the week my sister is at home and so am I for a couple of days.

Mom is doing better with the steroids on board and a consistent delivery of pain meds. While it’s more than she’d like to take, she does admit she has more energy which is nice.

This morning when I called her she had gotten up around 7, eaten a decent breakfast (even though she’s not interested in eating), had a shower and dressed.  This took her 3 hours and she was looking forward to a nap, but hey, it’s progress!

One of the toughest parts of this disease process for her is the loss of autonomy.

She can’t just jump in her car and drive to the market, shop a bit and come home and put away groceries. Nor can she vacuum her house, change her bed, dig in her flowerbeds or easily make a meal. It all takes precious energy, balance and focus that’s just in short supply these days.

But she can do some things.

She can get herself showered and dressed. She can make herself a snack. She can visit with friends either on the phone or in person. And if energy allows, she can get in the car and go for a ride to enjoy the spring colors.

Mom is still alive and engaged in life to the best of her ability.

I guess if I had any advice for those who ask me: “What can I do for you or your Mom?” it would be – engage her.

Let go of your fears and sadness over the impending loss, and talk, touch and be emotionally, mentally and physically present to make a soulful connection with this person you call your friend.

In the end, as in the beginning, there’s ultimately nowhere to run except towards each other.

 

 

dig for the pony 3 ideas

Three Ideas To Ponder

Mom had a recheck appointment with Dr. Savage today. She looks good, but unfortunately the CA119 test (cancer marker test) showed over 4600 – the highest it has ever been.

The most recent chemo treatments are not working to keep the cancer in check.

And to add insult to injury, Mom had fallen at home an hour or so before her appointment.  Trying to reach her dog on the floor, she lost her balance and fell on her left side, which is now bruised and very sore.

It was a frustrating, painful morning, but hope was still being offered.

Dr. Savage said she’d been thinking about Mom’s case in the middle of the night and came up with three possible courses of treatment.

Treatment Option 1: Chemo Cocktail

Apparently patients that can’t tolerate oral chemotherapies often do just fine with infusions. The doctor hopes that will be the case with Mom.

The new mix will be made up of four different drugs, administered once a week.

She’ll get her first dose of this new mix next Tuesday.

Option 2: Radiation

If Mom’s cancer has not metastasized, direct radiation of the tumor in her pancreas is possible.

Her last MRI was in October, but on Monday she’ll have another one to see what’s going on in there.

If the tumor is still a single, this would be an option.

Option 3: Immunotherapy Clinical Trial

Apparently there’s an immunotherapy clinical trial that has not had a pancreatic cancer patient as a subject.

If she did say ‘yes’ to this one, it would be free to do so, but the side effects are as unknown as its curative effects.

All these things are extremely hard on the mind, body and soul. She’s hurting much of the time, and very, very tired.

We talked about all this being her decision.  For as much as I want her to be with me, I don’t want my own selfishness to put her through painful days.

For now, I’m just happy there are options available. And leaving room for the possibility of a miracle.

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.