Tag Archive | hospice

An Update on Frank and Nancy

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Do you remember Man of Science, Man of Faith, a story about my friends Frank and Nancy?

Frank was diagnosed with a recurrence of his cancer last month.  He was given 3 months to live.

It hasn’t been a month yet.

Three weeks ago, Frank and Nancy were still kind of hopeful.  Even I am not quite sure what I mean by this.  Maybe just that they believed Frank had some good time left and that he would surpass the three month expiration date he’d been given?

Exactly three weeks ago (a couple of days after learning about Frank’s updated diagnosis), I stood in my kitchen chopping vegetables and browning chicken for homemade chicken soup.  I was making it for Frank.   When the people I care about are sick and I feel helpless, I am compelled to make chicken soup and bring food.  I certainly felt helpless when I heard about Frank’s stomach metastasis, so out came the big soup pot.

A few hours later, when the soup was finished and packaged in big, blue glass bowls, I walked next door to Frank and Nancy’s house.  I dragged my husband along so he could deliver the large bag of organic fruits and vegetables I had picked up at the grocery store for Frank and Nancy.

I knew that Nancy would understand my response to her husband’s illness.  I knew this because she has showed up on my doorstep with food a number of times since my diagnosis.

Nancy accepted the big red bag full of produce.  But she did not want me to leave the soup.  She said that three families from her church had dropped off three different kinds of soup that weekend.

I insisted that Nancy keep the soup.  I said that they didn’t need to eat it, but that I had made it just for them, so they could freeze it or toss it, but I wanted them to have it.  I needed them to accept it.  I’m usually not this forceful, so I surprised myself with my insistence.  But they had to take it, for my sake, because I had to help in some small way.

A couple of hours later, Nancy called me to tell me that she hadn’t wanted to say anything, but Frank was only eating soft foods.  She said that he had tried the other soups but couldn’t eat them (or didn’t want to).  She told me that he tried mine and enjoyed it, including the soft vegetables and mushrooms it contained.  She said that he had even managed to finish a bowl.  She was so happy that she had to call.  And I was so touched that I felt a hard lump develop in my throat.

So two weeks ago when Nancy said that the soup was gone and she asked me to make more, I was delighted.  I was just getting over pneumonia and was so tired that it took me most of the day (with rests in between!), but I was honored that Nancy had asked.

This time I decided to roast a whole chicken.  I stood in the kitchen dressing the chicken, thinking about poor Frank and Nancy.  As I placed rosemary sprigs and a freshly cut lemon into the chicken, I recalled that day two summers ago.  Nancy had arranged a surprise 50th birthday party for Frank.  As I rubbed the herbed butter I had just made onto the chicken and under it’s breast skin, I remember how excited Nancy was.  She wanted everything to be perfect.

Nancy even went so far as to plan the party in a large and lovely space in the new town hall building — in another town a half hour away.  She didn’t want him to suspect.  She told Frank that the party he was going to was a graduation party for a girl they knew.

I was now chopping vegetables, placing them in the roasting pan beneath the chicken, and dousing them with olive oil and salt and pepper.

When Frank walked into the party room, we were all there.  His closest family and friends.  Nancy had even flown Frank’s brother and sister in from out of state.  So when he walked in and saw the fake graduation girl and noticed his own friends and family behind her, I think he was just as shocked as when everyone shouted “Surprise!”

I opened the oven and slid the roasting pan in.  It was time to start working on the soup now.

Frank was clearly surprised.  So surprised and touched that he wept.  Frank is a very tall man, so to see this tall man with a commanding presence stop in his tracks and begin crying was a moving sight.

I filled a large pot with water, chicken stock and salt and pepper, and I began washing and chopping more vegetables.

It was a great day filled with smiling and laughter.  Genuine happiness.  Nancy had done a beautiful thing for Frank.  Though she didn’t have a lot of money to spend, she made the party seem like she had a large budget to work with.  She worked hard on this day and she asked people to pitch in where they could.  She knew it was an important day.

It would come to be more important than she ever could have realized.

I gently dropped vegetables into the pot and added a touch of olive oil and seasoning to the stock.  Soon I would take the golden brown chicken from the oven and add juicy chunks of chicken and tender, roasted vegetables to the stockpot.  And then I would walk next door to Frank and Nancy’s house with my pot and with the hope that Frank would be able to eat my humble offering.

That was two weeks ago.

One week ago, Nancy said that Frank was now only able to drink the broth.

And things got progressively worse this week.  I remember hearing the distress in Nancy’s voice whenever we talked.  She was tired from worry and from caring for Frank around the clock.

And when Frank and Nancy’s son came over in need of a ride to school on a couple of the mornings (because he had missed the bus so he could help his mom take care of his dad), he was noticeably quiet.

Nancy was having trouble keeping Frank hydrated.  She was using a syringe to wet his lips and mouth.  I took Pedialyte popsicles over so she could melt them down and replenish some of his electrolytes.  But we knew they wouldn’t make that much of a difference.

Despite her vigilance, Frank had also developed a bedsore.  Nancy said that the nurses had’t been caring for it, so I took a special cream over that would help to soothe it and form a barrier.  But I was afraid that it would get infected and I knew that it must be causing pain.

Early Thursday morning, the phone rang when it was still dark outside.  It was Nancy.  She said that Frank was unresponsive and that he had wet himself.  I tried to conceal how upset I was to hear this, but it was no use.  I talked to Nancy for a little while and told her I would bring some adult diapers over.  They had given me these when I was hospitalized for my hysterectomy last year and had been hemorrhaging and pads were not enough.  I was sad when I realized that I had no idea back then that they would be going to Frank.

Frank came around again that morning and was able to talk to Nancy and his kids, but I knew that these things were signs that he would be gone soon.  My guess was that day.  Frank and Nancy’s son came over for a ride to school after he helped his mom clean and diaper his dad.  He was visibly shaken.  It was heartbreaking.  He is a good kid and a good son.  I was upset that he had to experience this.  His prom was the next night and instead of worrying about what kind of corsage to get his date like his friends, he was worrying about losing his father to cancer.

The day went on and night came.  At 2 a.m., the phone rang.  I knew it was Nancy.  I picked up the phone and heard a small voice on the other end.  It was Nancy telling me that Frank had just passed.  She sounded both upset and relieved.  His pain had ended and his suffering was over.

Cancer claimed another life.

Frank was just 51.  He is survived by his loving wife, son, daughter, brand new (5-month-old) granddaughter, and a large group of friends and family who loved him.

Man of Science, Man of Faith

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If you were a Lost fan and saw every episode (as I did), you might recall an episode titled “Man of Science, Man of Faith,” (S2, E1).

It was the first episode of season 2 and the episode where Jack, a surgeon, meets his future wife.  She is brought into the E.R. after a devastating car accident that leaves her paralyzed.  Jack plans to operate but tells her that the possibility of regaining function is almost nonexistent.  Jack’s father, a senior surgeon, witnesses this exchange and chastises his son for squelching his patient’s hope.  Jack barks that her spine is crushed and that any hope he’d be giving her would be false hope.  He performs the surgery to the best of his ability, but she is so damaged that he believes she is still paralyzed and that he was unable to fix her.  When he goes back to apologize and tell her she will never have feeling below her waist, she begins wiggling her toes.  Jack, who was previously only a man of science, realizes that science and faith merged to create a miracle.

My friend Nancy has known about my cancer since the beginning.  She watched me barely make it through harsh chemos.  She visited when I was giving myself daily injections of Neupogen as my white blood cell counts plummeted.  She came to say goodbye on the eves of major surgeries.  She brought dinners over to feed my children when I had I.V. bags full of fluid running into the Powerport in my chest and was vomiting so much that I could barely hold my head up.

She watched me spiral downward into a deep well of cancer.  And then she watched me slowly claw my way up to the surface again.

And somewhere in the midst of this, she came to my door with both fear and hope in her eyes.  She told me that her husband, Frank, had something show up on his CAT scan.

I knew that Frank’s hadn’t been feeling well.  I knew that he didn’t look well.  And when I last saw him, the yellow tint in his eyes did not go unnoticed.

She said that he was scheduled for surgery, but that God was good and that he would be fine.

As you may have guessed, Nancy is very religious and is outwardly so.  She has no qualms about sharing her beliefs.

Nor does she have any trouble with telling others to have hope and faith.  She has done this with me many times since my diagnosis.  She has even gone so far as to tell me in a roundabout way that when I am not doing well, it is because I am not trusting in God and not being faithful enough.

It is always a difficult thing for me to hear, especially during the times when I have felt my worst.  I’d be lying if I said the idea that I am responsible for the cancer for any reason is a tough pill to swallow.

But I listen and nod my head because I know Nancy is not saying these things to hurt my feelings.  I know she says them because her faith is so strong that she can’t see these situations from any other angle.

Frank’s surgery revealed a small tumor.  It was malignant.  They also found a small amount of cancer in one lymph node.  The good news was that the surgeon managed to get clean margins.

I was noticeably concerned, but Nancy reminded me that God is good and that the cancer was small and her husband would be fine.

Frank is a doctor and a man of the cloth.  Frank is both a man of science and a man of faith.  Usually.

When Frank started chemo, Nancy did her best to make healthy foods that Frank could tolerate.  She took care of him and they prayed together regularly.  They both had faith that everything would be fine.

Frank had a really difficult time with chemo and eventually decided that he’d had enough because it was making him so sick.  They repeated his scans and everything looked good.  So they both said “God is good” and made the decision to stop the chemo.  Frank was so sick from the chemo that he and Nancy thought it wasn’t worth continuing, especially when his scans were good and he had God protecting him.

I was reeling over this decision.  I insisted that Frank should continue to pray, but that he should also consider finishing the chemo.  I repeated that he would be horribly sick during chemo, but that he would feel better when it ended.  I said that it would be worth it in the end because it would give him the best shot at life.  I pleaded with them then — and many times since.

But they insisted that they were going to let God take care of it.  He didn’t need the harsh chemo.  He just needed to be faithful.

So time passed.  His scans were still good.  I insisted that he go back and finish, though.  But my friends told me that it wasn’t worth the side effects and that God was healing him.

And then he didn’t feel well.  He was having trouble eating.  He didn’t look good.  He was losing weight.

A few weeks later, Nancy said Frank had collapsed and they were going to the hospital for dehydration.  It was the second time in a month.

I suggested that she look into home I.V. hydration so he could avoid these hospital stays.  And I also pleaded with her to reconsider the chemo decision.  She said that it wasn’t open for discussion.  Frank did not want to get sicker with chemo and she wasn’t going to push it.  She still insisted that he would be fine.

He had to go back into the hospital last week.  Again for dehydration.  But this time the scan revealed something.  But she didn’t tell me about it.

She called tonight during dinner.  She asked about the times when I had home hydration because the hospital was giving her a hard time.  They told her that he would need to enroll in hospice and sign a DNR before they would start home I.V. hydration and was this what I had to do?

I told her that it wasn’t at all.  I signed a few forms at the Cancer Center and then a few more when the delivery truck and my nurse showed up at the door.  But it wasn’t hospice related.  And there was no DNR to sign.

The conversation haunted me.  Then I learned that Frank was no longer going upstairs.  Nancy was giving him sponge baths in the living room.  And a hospital bed had just been delivered.

I was sick to my stomach because I had been through this with loved ones before and I knew what it meant.

Nancy said that the latest scan revealed that the cancer had metastasized to his stomach.  That he has 3 months to live.  3 months.

They are scared.  And rightfully so.

And my heart aches for them because I love them both and I don’t want this disease to take Nancy’s husband.

I do believe in God and I do believe in the power of prayer.  But I also believe that modern medicine exists for a reason.

I  wish they could have found a way to balance medicine and faith.  I wish he had finished the chemo.  And I’m sure they do, too.

 

Palliative Care at 30-Something. What Does it Mean?

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Palliative Care Integration Model
Image Credit: University of Alabama School of Medicine

If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.

Hospice is a scary word in the cancer world.  At least that’s been my experience.  In Cancerland, nothing comes after hospice.  That’s it.  Game over.

So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat.  I know mine did.

For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds.  I was there when hospice began for them.  And the fact that the start of hospice coincided with the start of their palliative care was not lost on me.  So it’s only natural for me to associate one with the other, right?

Things were different years ago.  My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer.  She suffered with no relief until her poor shiny, wounded head lost its luster.  She suffered until hospice started.

The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs.  But she suffered until that point.  And even afterward because the pain control wasn’t great.  It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.

My grandfather’s scenario was different.  I’ve blocked out the length of time he actually suffered with lung cancer.  I was there, so I should know.  But it is too difficult to remember how long the cancer actually took to kill him.

What was different about his experience?  When he was ready for hospice, they didn’t come to us.  We moved him to a hospice.  This was where his palliative care began.

But it only lasted for a day.  We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist.  The volunteers were warm and comforting and did their best to keep my grandfather pain free.  He died that night.

So it’s likely that my ideas about palliative care and hospice are rooted in my experiences.  I learned that palliative care was end-of-life care. But this is not true.  At least not anymore. So what is it, exactly?

From the Cancer Center’s brochure:  

Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness.  The goal is to help people live comfortably and to provide the best possible quality of life for patients.

Patients struggling with the uncertainty of serious illness need comprehensive care and support.  They need to know they aren’t alone.

What Can You Expect from Palliative Care?

  • Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
  • Improved ability to carry on with your life
  • Improved ability to tolerate medical treatment
  • Better understanding of your medical condition and medical choices

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Doesn’t sound so bad.  Sounds good, actually.  So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning.  And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team.  Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.

I will let you know how it goes…  Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.

We shall see…  Good night…