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.

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

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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. 

 

 

Painful Realities

The remission is over. CA-119 numbers are back and at 2147 they are higher than they were in January following diagnosis.  This is not good news, but Dr. Savage is encouraging us not to focus solely on the numbers.

Mom’s most recent MRI showed the tumor as smaller with undefined borders, but the pancreas itself shows density changes – signs of disease and inflammation.

Chronic and Increasing

I think the hardest part right now is the increasing pain Mom is going through and how much it controls everything in her life.

She wants to be present in her life and not take any drugs to alter that, but in enduring ceaseless midsection pain, control is taken away from her anyway.

Managing the pain by taking Norco (pain meds) every 4 hours and making sure to take enough Kreon (pancreatic enzymes) before taking anything in does help, but not enough to fend off the chronic fatigue that comes from fighting constant pain.

I feel like I’m constantly barking not-so-helpful orders at her.

Eat more pot brownies.

Use a cold pack on your back.

Use a hot pack on your front.

Sometimes it seems it’s all I think about.

The New Plan

Mom and Dr. Savage talked things over today and decided to begin chemo yet again after Thanksgiving.

Dr. Savage explained that since we know what works, we’ll go back to it.  Meanwhile she’ll research some other drugs in case this one becomes ineffective – which can sometimes happen as a patient’s cancer learns to fight off what’s coming.

The scary part is how hard chemotherapy can be on the body.  Mom is already weaker than she’d like to be and losing some weight as it’s so hard to eat.

Yesterday when were out and about Mom said to me: “Sometimes it’s hard to remember all of this is palliative and not curative.” 

That’s pretty much life in a nutshell for us all right now isn’t it?

In retrospect Mom’s comment resonates on a lot of levels. Whether it’s the general election or cancer it’s true.

Nothing will make it all better, but doing “nothing” really isn’t an option.

November Is Pancreatic Cancer Awareness Month

november-pancan-mo

When we first learned that Mom had pancreatic cancer it felt like we were in free fall. With no footholds and nothing to grab onto, we clung to each other and braced for the inevitable – hitting bottom.

Much to our surprise Mom responded extremely well to chemotherapy and her cancer went into remission.

Four months of normal days post-chemo was a gift of time we’d not expected, but gratefully accepted.  Knowing that only 29% of pancreatic cancer patients diagnosed this year will survive to 1 year after diagnosis made this even more significant.

There is a great need for education about this disease, and hope for those patients and families who are going through the treatment process.

November 17th is World Pancreatic Cancer Day.  With 280,000 new cases diagnosed each year and survival rates of just 2-10% five years after diagnosis, pancreatic cancer is worthy of further research to discover its cause and effective treatment of the disease.

During November please consider educating yourself about the latest updates in pancreatic cancer research and treatments.

Set up a Google alert with the keywords ‘pancreatic cancer research and treatment’, and share links to information you learn via these updates with friends, family and the public on social media.

This is one way you can support pancreatic cancer awareness now and in the future.

 

 

 

Irregular Borders

While bracing for the worst storm in decades Mom received the call she’d been waiting for from Dr.Savage this afternoon.  The results of the MRI taken earlier in the week were in.

There appears to be no spread of the cancer to other organs and the tumor itself is not really showing up very clearly. “Irregular borders”, hardly visible on the scan.

The tumor which had been discovered in January had been measured at 3.3cm at that time, then not seen at all on the last MRI taken in July after 9 rounds of chemotherapy with the drug Gemcidabine.  Now there’s an area on her pancreas that shows inflammation and a faint, ill-defined mass measuring 2.2cm.

The chemotherapy definitely worked, and she’s had the summer to enjoy her friends and family despite the ugly diagnosis of pancreatic cancer.

What’s Next?

Dr. Savage is giving her pain meds for midsection and back pain that have increased since late August. They are narcotics which are supplemented by the occasional slug of twig tea or similar.

Mom’s blood sugar still bounces around, she’s always tired, takes steroids to keep the swelling and redness in her legs at bay, has two aortic aneurysm  and there are other cancer effects that make it really tough for her to get out of the house some days, but it’s still better than hospice – which truly was our fear before the call.

So…it’s all relative.  

At the end of October we’ll go visit a granddaughter in her first year of college.  Mom’s hair has started really growing back in and it’s curly (something it wasn’t before…) and she’s lost 17 pounds since her diagnosis.  Time to go shopping.

And we’ll hang out, laugh, cuddle and try to not think : “…this could be the last time we do this together.”

Then we’ll come home and Mom see Dr. Savage on November 3rd to discuss a second cycle of chemotherapy.

Just in time for the holidays. 

Season of Change

With the turning of the leaves so changes Mom’s health.  Painful days and nights are now the norm, with unrelenting fatigue no matter how much she sleeps.  Unsteady on her feet, falling is always a possibility.   Itchy skin, high blood pressure and blood sugar, with no other reason than her pancreas is sick with cancer.

Summer Was Great

Mom was able to attend her 60th high school reunion and enjoy her birthday with all the grandkids.  Outings became more routine again, and going to the market wasn’t such a chore. Remission – something we never expected, was a tremendous gift of time.

Last week as summer turned into fall Mom went to see her oncologist for a check-up after two months of being off of chemotherapy.

Autumn, Not So Much

Because Mom is having so much pain in her midsection and into her back it was decided that she should have another MRI.  Pain medication Norco was prescribed, and it was OK’d that she use whatever she needed to stay comfortable including Twig Tea made with the stems and leaves of a neighbor’s marijuana plants.

Chemo may still be on the table, but despite the miraculous disappearance of the tumor, it was hard on her system and Dr. Savage would like to avoid it for as long as possible.  Mom had gone to the hospital with complications as a result of the chemo drug that had worked so well against her cancer, and there’s no guarantee it will do anything other than make her feel worse at this point.

We left the doctor’s office knowing that the likelihood is that the cancer is advancing yet again.  About 24 hours later I checked the CA119 blood test and it was 898, up from the mid-300’s it had been a month ago.  An unfortunate confirmation that something is going on and it’s not good.

Everyday Rhythms

Tonight while talking with Mom on the phone we agreed that we feel this mutual sense of urgency to make meaningful conversation all the time now.

A need to talk in depth about everything, paying strict attention so as not to miss any detail.  The crazy thing is, what we end up doing is much more mundane, but equally enriching in its own way.

We talk about our dogs, what I found on sale at the store and what she might like to fix for dinner tomorrow.  We plan for my next visit and what I might help her accomplish while I’m there (changing her bed, going through closets to look for donations to the church yard sale, etc).

And each night when I call her and tell her I love her and she replies with the same, we find a comfortable rhythm in catching up on another day that has passed and planning for the next one.

Nothing urgent about it, and yet, meaningful all the same.

 

 

 

 

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!