dig for the pony final

She Found The Pony

On Sunday, May 21st, 2017 at 1:24 pm my mother Emily Ann Lewis-Knight found her pony and rode on home.  Her exit was swift and sure, and I was just happy to be there with her to say goodbye for now.

Mom’s journey was one that was followed by many.  Sparking fears in some that had them running from both of us, and instilling hope in others, drawing them near.

Whenever anyone would ask me “How do you continue to do this?” I always thought it a strange query.

How could I NOT do it? 

It has been my honor to help my Mom and my pleasure to get the opportunity to spend so much time getting to know the essence of such a beautiful soul.

Through mind-blowingly real times we laughed, cried and found a soul connection that few experience. Her exit leaves me sad, but also calm without her because we prepared for it together.

By God’s grace we were given this gift of time.

A perfect trip to the beach weeks before, followed by a fun Mother’s Day cooking my first quiche under her expert tutelage, and a day together the day before she died where my daughter and I visited as though it would go on forever.

Nothing was left unsaid and the strong bonds forged of love remain.

Cancer Patients Can Be Organ Donors

The night Mom died I was called by the hospital around 11 pm asking if I’d authorize the donation of her eyes, something that would have to occur within the next three hours.

The call came out of the blue and blindsided me for a minute.  The conversation that followed was difficult however I’d only seconds before been looking through her wallet and found her organ donor card.

Mom had discussed organ donation with me previously, but she didn’t think it was possible due to her chemotherapy treatment. Much to my surprise she was eligible to help by donating her eyes.

Two questions came up in my conversation with the hospital regarding Mom’s organ donation.

  1. What if we want to have a viewing?  I wanted to have a viewing for those who wanted to see her, but I didn’t want her not to look like herself. FYI… they replace the eyes with prosthetics. (You can’t tell a thing.)
  2. Doesn’t chemotherapy negate organ donation?  Yes and no. It’s evaluated on an individual basis with some donors being eligible. It’s taken on a case by case basis.

It should be noted that if you are an organ donor it doesn’t cost you a thing to sign-up, nor does it cost your family to give the OK.

You can designate what can specifically be donated too, although cases are still evaluated individually and not all organs are viable in all cases.

Elderly can donate, and funeral plans won’t be delayed by organ donation.

If you want to sign up to be an organ donor you can generally sign-up via your state’s Department of Motor Vehicles or do a Google search for “How to become an organ donor” and your state.

What Worked For Us

It was 2005 when Mom found out she had two aortic aneurysms.

She was terrified they’d blow any day, but they were still a centimeter from being eligible for insurance to pay to repair them. (Hers were 4cm and they would have to be 5cm.) Instead of a repair, she’d be having CT scans every 6 months for the next 12 years to watch and wait.

Worrying all the time about whether or not today is the day you’re going to die is no way to live.

Mom shrugged and let it go as there were still many hills yet to climb.

Among them two heart attacks, breast cancer requiring a lumpectomy, a spontaneous hip fracture and subsequent pulmonary embolism, blood clots in her legs, lung cancer diagnosis, lung resection surgery to remove a section of her lung containing the cancer, pancreatic cancer and 16 months of palliative chemo treatment including a glorious 4 month remission last summer.

Of course we did worry again and again about her health issues, but we both said our prayers throughout and had faith in God and each other.

This habit of faithfulness and lots of laughter about all the absurdities that came along with each new challenge gave us an incredible bond.

Something that had been very strong for the past twenty years became divinely indestructible.

I knew her secrets and she knew mine. We’d apologized where we needed to, and forgave real and perceived slights.

Some would say we were in an enviably good place.

This got me to thinking about what I learned through the process and what advice I would share with other family members and caregivers taking care of cancer patients.

A Cancer Diagnosis Is Not A Death Sentence

Being diagnosed with any form of cancer doesn’t mean life is over.

Yes, we all have an expiration date and some of us get a heads up on that one with a cancer diagnosis, but then again there’s peril everywhere if you choose to focus your energies there. Don’t do it. You’ll feel better and it will make the hard battle ahead easier for you and the patient.

Swear, Cry and Bake Brownies

It’s OK to get mad.

Cancer sucks and watching someone who has cancer change emotionally, physically and mentally is gut wrenching at times. Cursing like a sailor helped me, as did sobbing in my car after I’d left Mom’s driveway. Brownies… well, chocolate is a cure-all in my book but admittedly I’m a nervous eater.

Love Big All The Time

Be fully present in each moment. Put your electronics down. Look into each others eyes when you talk. Hold hands when you sit and wait for an appointment. Laugh about silly stuff. Take the lead when needed. Back off and allow for autonomy if possible. Be gentle and honest in your approach. Let the moments dictate what comes next.

And be grateful for the moments.

Whether you have 5 minutes or 50 years to live, dig for the pony.

I promise you, it’s worth it!

dig for the pony final

May 2, 2017 – Trip to Oregon Coast

 

 

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.

 

 

 

 

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 churning with uncertainty

Churning With Uncertainty

“It’s going faster now. I can feel it.”

I felt my chest get heavier and my eyes fill when I heard Mom utter those words yesterday.

Only a week before when my sister was visiting with her family on their Spring Break she had told Mom that she hated to go home, but that she would see her this summer.  Mom replied to her by saying that she didn’t think she’d be here then.

What do you say to that? 

A month or so ago Donna, one of my oldest and dearest friends who recently lost her father to a long battle with cancer, suggested a book to me. Final Gifts  – written by Maggie Callanan; a hospice nurse,  this book gives caregivers and family members some insights into the end of life process. It’s less about the mechanics and more about the need to maintain a soul connection, prepare and let go. It’s also about hospice patients and how in subtle ways the offer up final gifts to those they love.

Mom has been reading this book and I’ve been reading the companion book: Final Journeys. Neither are light reading, but both offer up helpful information and stories.

They are definitely not books that I feel like you can read cover to cover, but rather in bits as time and tears allow.

Dig for the pony Mom April 2017

April 14, 2017 – Enjoying lunch (a Mucho Gusto’s chicken tostada) with my beauty in blue.

For the past three weeks Mom has been undergoing weekly chemo infusions. Each one takes about 4 hours and leaves her feeling tired, but not as wiped out as previous medications have done. She’s also taking daily doses of 20mg of Prednisone – a steroid – that is given in an attempt to boost the effectiveness of the chemotherapy drugs and her pain medications.

She seems to be managing her pain much better with pot before meals, and more frequent oral meds in addition to her pain patch which is a continuous transdermal dose. Increasing the amount of pancreatic enzyme taken with meals and snacks helps too.  The steroid dose gives her a lot more energy, but it also makes her quick to anger and/or weep.  She hates that, and feels confused by it.  I try to remind her that it’s just the steroids, while holding her tight in an attempt to ease her fear and frustration.

Mom is losing weight and feels much weaker. This concerns her a great deal. As a retired nurse, she simply knows too much. I know it too, but I don’t focus on it. To me she is as beautiful as ever, and no physical changes affect what I see.

Last night in an attempt to divert my attention away from the impossible to the possible, I was looking at houses on the beach to rent for a day or two.  Looks like I found one.

The house is oceanfront with lots of windows. Something I was looking for because walking on the beach is no longer an option. A newer rental with wheelchair accessibility and walk in shower, it would be perfect for an early Mother’s Day getaway.

Next week it’s chemo again and then two weeks off. An open window of time to go on a trip and relax at one of our favorite spots.

I pray it works out.

 

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 waiting

Wandering And Waiting

Yesterday I drove 540 miles roundtrip to take my daughter back to college after her week off for Spring Break.

Today I mowed our half-acre lot and power washed the front walkway and part of the patio before finally taking a shower, eating dinner and taking a nap before calling Mom for our evening chat.

Tonight I’m looking forward to my favorite Showtime drama Homeland. This Sunday ritual includes a bowl of air-popped corn and a ginger ale.

I’m also putting carnitas in the Crockpot to take over to Mom’s house for dinner tomorrow night.

I was going to bake a cake, but decided that Pepperidge Farm’s Chocolate Fudge cakes in the freezer section of my local store looked like a much better idea. My sister and her family are in town for part of their Spring Break – a rare treat for us to see them.

It seems like lately if I’m not driving, napping, showering, eating or cleaning something, I’m watching YouTube videos on how to build raised bed planters from discarded pallets. As of tonight I’ve calculated the amount of soil and compost I’ll need, and decided chicken wire on the bottom of the planters is the best possible way to keep out the gophers.

In my borderline manic behaviors I see my desperate desire to control the uncontrollable changes that are afoot on many levels.

I can’t help but notice that my once dark brown hair has turned gray seemingly overnight. I ponder going back to coloring it, and then I drop the idea because Mom says it looks good the way it is.

My bed is a rumpled pile of half a dozen pillows, a down comforter, a top sheet that wads up at the foot of the bed no matter what I do and my favorite super-soft purple, cream and turquoise colored fleece throw from Costco.  I bolster the pillows all around me prior to sleeping and tuck the fleece under my chin before taking a deep breath in and exhaling just as deeply before I pass out.

I talk to myself a lot. I’ve always done it, but I think that up until recently most of it was just chatter in my head or under my breath. Now it’s just out there, turning heads in the grocery store. Usually it’s as I’m trying to remember what to do next or what to bring with me as I’m darting out the door to the car.

I’m in the car a lot. It’s about 70 miles roundtrip from my house to Mom’s house and depending upon what’s up, I drive that loop 3 to 5 times a week. It can be tiring, but 99% of the time, I’m just grateful I can do it. I’m also grateful for Pandora radio. The 80’s stations in particular.

My head hurts from problem solving, and my heart hurts because I know I’ll never be able to solve the ones that impact those I love so deeply. I grasp to control the uncontrollable, even though I know it’s not my job.

There are so many personal lessons being thrown in my path these days, and the learning curve is very steep.

I guess the good news is that despite being weary in a way that I’ve never felt before, by the grace of God I continue to be able to do what I need to do to help others and still remain relatively sane while doing it.

Tomorrow is a big day of sorts. Mom, my sister and I will go to a check-up appointment with Dr. Savage and learn the results of Mom’s MRI. By 11am we will know if her cancer has spread and if the new chemo treatment is working.

Mom has been extremely pained as of late, but I still think that much of what she feels is frustration and fear. Living with this diagnosis constantly on her mind and walking around in a fog and getting weaker due to the chemotherapy, all take their toll. I know there are times she wonders why she is still here and why she is fighting so hard to stay.

I’m hoping tomorrow Dr. Savage can deliver that reason why.

And praying Mom can hear it.

 

 

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.