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.

 

 

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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.

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.

 

 

 

 

 

 

dig for the pony January 2017

One Year Later

Today was the first time Mom’s CA119 numbers have gone up instead of going down while being treated with chemotherapy.

Admittedly, not what we wanted to see, but despite the numbers she looks good; her weight remains the same, she’s not jaundiced and she still has her hair, and that’s deceiving.

Perhaps that’s why pancreatic cancer is so hard to diagnose in the early stages?

Individuals with the disease can look perfectly normal despite having a cancer that doctors still struggle to effectively diagnose and treat.

Life Lessons

Last year when I began writing this blog I had no idea where Mom’s cancer journey would take us.

I couldn’t have imagined the amazing remission she was gifted with this past summer following four months of chemotherapy, nor the way her hair would come in post-chemo; thicker, curlier and more beautiful than before.

I struggled to not see each family milestone and holiday as the last we’d have together, and I went on anti-depressants to combat the tearfulness I found enveloping me all too frequently.

We both came to terms with her lack of mobility and new ways of doing things.

While I actively sought to find hacks to make things easier for us both and thanked God for the privilege of being able to help her, Mom mourned the loss of her independence and thanked God for the help of family and friends.

Our entire family has all lived with cancer for awhile now, and life has changed.

I feel older and it’s harder to find joy, but when I do it’s in simpler things.

Moments of beauty and connectedness to people, animals and nature hold more meaning.  I have no interest most ‘things’, which sometimes leads me to lack focus, but I’ve learned to give myself permission to wander too.

Mom navigates her world with grace, strength and determination.

We talk at least twice a day and I think we both relish even the most mundane of conversations. She has had a friend die of this disease in recent months, and another is newly diagnosed. She’s in the middle; living with cancer and learning its lessons along the way.

Where We Are Today

In the past two months Mom has been enduring increased pain in her midsection and back, relying on her Fentanyl pain patches and oral doses of Norco to manage her days and nights.

She can’t help but wonder if the cancer is winning the battle against the chemo and or moving somewhere else.

Her legs swell and get very red due to the chemotherapy and her own poor circulation.

She has chest pains occasionally which is concerning as she has two aortic aneurysms and has had heart attacks in the past.

Her pain used to always be related to eating, but now the dull, deep ache exists all the time and it gets worse after she eats.

One exception to the Eat And It Hurts Rule seems to be if she adds pot to the mix.

Last week she decided to use her vape machine to get some medicinal herb relief and it worked.  Then she got the munchies and for the first time in 5 years ate some popcorn she’d been craving.  Always before it had hurt way too much for her guts to process it, but apparently if she has enough dope on board – it’s all good!

Her CA119 numbers rising isn’t what we wanted to see, but we still have faith that an increased dose of Gemzar or something else may once again knock her cancer into submission.

In the past week she has seen her granddaughter off to her second semester of college, spent time with her dear friends, and is making plans to spend time with even more friends during her church’s all-you-can eat crab feed.

Life goes on, and thankfully together, so do we.

 

cancer greatest gift

Cancer: The Greatest Gift

“What do you want for Christmas?” 

With the holiday approaching my Mom asks me this question a lot, but she knows the answer as it’s what she wants too.

It’s been a month. Two chemo treatments have been completed, with another one coming up next week.

Treatments have been spaced every other week, to give her body time to rebound from the chemical attacks and gain back some energy for other things.

While the CA119 numbers haven’t yet gone down, the expectation is there that they will.  We’ve already witnessed that miracle once before, what’s to say it can’t happen again?

Prior to this cycle of chemotherapy Mom had two chief complaints.  One had been extreme fatigue and the other a painful midsection, radiating into her back.

After the first chemo dose her fatigue came on strong with nausea about three days after her infusion, lasting about four days. She had no interest in eating, and napped a lot.  Sometimes a shower was about all she could muster in a day.  Then she took on the second dose with the expectation that there would be more of the same.

Surprisingly that didn’t happen.

The second dose of Gemzar – same amount of the drug as before – made her feel tired for a couple days; hitting a few days after the infusion, but then the fatigue dissipated.  The worst part seemed to be her inability to remain asleep, for once she would awaken her thoughts were so loud in the silence of the night that she couldn’t seem to quiet them without more drugs.

In less than a week things started to get better.

Mom looked more herself and was able to attend a Christmas party with her high school classmates. (Something she so looks forward to each year.)  She was also able to go to lunch with friends and go grocery shopping with me in tow.  We managed to get her Christmas tree up and our laughter returned.

We were blessed with truly good days.

To remain ‘in the parade’ as she would say, Mom has to wear a transdermal narcotic patch for pain management in addition to oral medication.  It seems to help a lot, but you can’t help but wonder if the increased pain means the cancer is running rampant or losing the war.

Our spirits are humbled and grateful for God’s blessings this holiday season including the many friends and family members who have shown us both such genuine kindness and compassion.

And as awful as cancer can be to individuals and those who love and support them in their fight, it’s also an incredible gift.  For within cancer’s painful emotional and physical challenges it provides many lessons. Ultimately stripping away all that is unnecessary and leaving behind a deeper understanding of what it means to live and love.

 

Brave Faces

Tormented by fear-filled thoughts and by the physical pain that seems to be increasing, Mom puts on a brave face each day, but there’s a deep sadness that weighs heavily on her and just won’t go away.

“When I’m gone…” she starts to tell me something that I’m sure she thinks is important, but I don’t hear her finish the sentence as I’m lost in my own head imagining and trying to push back the unthinkable.

I decide to crawl into her twin bed and cuddle up behind her.  Our mutual warmth seemed to soothe us both. Our breathing slowed into a common rhythm and we found some peace amid the chaos of cancer.

Chemo Restarted

With CA119 numbers increasing, it was decided that Mom would restart chemo. Since this is not curative, but rather an attempt to slow the cancer and give her more time, the same dose and type of drug that had worked before was to be used.

Dr. Savage warned her that the chemo might not work as well, or be harder to take this time around.  A prescription for Fentanyl patches was given to her for a steady delivery of pain meds, instead of having her try to remember to take a pain pill every few hours. (Mom is allergic to many pain meds, so trying to figure out what will work is a challenge.)

The chemo treatment went well. The tech found her port and Mom didn’t even feel the needle going in.  No nausea or significant fatigue after the treatment because they gave her steroids beforehand which actually amp her up for a day or two.

But then the crash.

Day three after chemo Mom could barely get up to use the bathroom. Her fatigue was off the charts and consistent pain continued, despite regular oral pain medication.

I spent a couple nights over at her house, helping and waiting out the chemo effects.  It took about five days before the fatigue began to lessen and she could navigate her world a bit better.  The pain continued, but she was doing her best to take her enzymes, eat, drink water and engage in conversations versus sleeping all day.

Happy Thanksgiving

DSC_2560.JPG

On Thanksgiving she looked beautiful.  Make-up and hair done, she radiated holiday spirit and the love that binds us.

She’d gotten up early to get the turkey cooking, and had worked on Grandma’s stuffing the night before. Between the two of us we managed to get dinner on the table at lunchtime to allow for an early evening for all of us.

Exhausted, but trying not to show it I know she wanted to continue to visit.  I assured her we’d be back and walked her down the hall to her bedroom. I got her into her pajamas and tucked into bed. And then she began to cry.

I took her face in my hands and put my forehead to hers.

“I’m thankful for you” I said.

“I’m so thankful for you too. More than you know…” she replied.

I know Mom…I know. 

 

 

Remarkable Remission

A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

The Tumor

“What does the MRI show?” Mom asked.

It had been several days of anxiously awaiting the news following cessation of her chemotherapy two weeks ago and the MRI; which had been painfully long, just last week.

“Not much” replied Dr. Savage.

“The report indicates that there was nothing to measure. They can’t find it. Where your tumor had been there’s an area of inflammation, but no tumor and your blood work looks good. You’re not anemic anymore and your white cells are down into normal levels.”

With the CA119 numbers dropping in such a dramatic way during the course of chemotherapy treatment I’d asked Mom in the last few weeks to visualize her tumor shrinking into a grain of sand and then have it blow away.

Archangel Rafael

I’d been doing it too, and praying to St. Raphael. (Despite not being Catholic or terribly religious, I do believe in the power of prayer and in the power of angels to intercede on our behalf when asked to do so.) Still… I think this news dumbfounded us both. 

 

“I’ve never seen a patient with pancreatic cancer respond so favorably to treatment. To be honest, when we had to remove the chemo drug that you were allergic to I was not very optimistic at all. In most cases we will only get about 15% of the patients responding to chemo at all. It’s usually only a way to slow it from spreading.  I’ve never seen this happen before.”

Dr. Savage seemed just as baffled by this turn of events as we were. We were all happy, albeit in a rather subdued way, but kind of unable to really show it for fear that might jinx it.

“So…is this considered remission?” I asked.

“Yep. We’ll stop chemotherapy and do blood work in about a month.  We’ll monitor the numbers and go from there. If things still look good in six months, we may do another scan” she said.

And then she turned the page of her report to address another subject.

The Aneurysms

“There is this aneurysm thing…” Dr. Savage’s words sort of trailed off as she looked at Mom with a question mark seemingly hovering over her head. “It’s grown since the last scan. That’s not really my area, but I know you’ve had them for awhile.”

Some might freak out about having an aneurysm, let alone two of them that are quite large. However, this isn’t something that we are frightened by any longer as for the past six years doctors have scanned, measured and waited for Mom’s aortic aneurysms to grow, leak or rupture and require repair.  Both considered ‘big’, but not big enough for insurance to pay for the surgeries to repair them.

The aneurysm issue has taken a backseat to cancer as of late, so to hear that one had grown seemed almost laughable on the heels of such good news about the “POOF” of the tumor in her pancreas.

Dr. Savage seemed concerned. “I’ve put in a call to Dr.Faught (Mom’s surgeon) to see if he wants to talk about putting in a stent to repair the lower one (at the renal level above the area where the arteries branch off into the legs).  Considering how well you’re doing, we should really address this thing.”

We’ll wait and see. Prior to the chemotherapy rounds Dr.Faught had decided not to monitor her aneurysms any longer. Palliative care being the goal, with no thought that there might actually be healing involved.

Despite this news of the aneurysm growth and the thought that another procedure might be in the wings, as we left the doctor’s office all I could think was: This is a good day!  

A miracle had occurred and we’d witnessed it. Something that doesn’t come along for most people under similar circumstances.

I felt tearfully happy, and incredibly humbled. Grateful for so many people who have prayed for Mom’s healing and the strength for our family to keep moving forward despite the sometimes crushing emotions.

I kept finding myself mumbling Thank You God on the drive all the way home.  That and listening to iHeartRadio’s 80’s stations and wildly singing along word for word with every song that came on.

A good day indeed!