Living With Cancer...

On a scale of 1 to 10, our life is somewhere around an 8.  It would be a 10, truly, if it weren’t for his cancer battle.  Life together has always been fun: he completes me and I complete him.  We find the joy in every day and find happiness in a simple existence.

People used to comment that we seemed to always be going and doing…. We went to the mountains frequently, since they are almost literally in our backyard. Picnics, hikes, photos, and a view that visitors come from all over the world to see…. Couldn’t ask for much more. 

 

We went out to eat several times a month.   One of our favorite trips is to Fresno, an hour away.  We have a couple of favorite restaurants up there and shops we like to visit.  Podunk no longer has a bookstore, so Barnes&Noble  in Fresno is always a fun destination.

We have travelled, too: Yosemite, Yellowstone, Chicago, Milwaukee, Disneyland, Las Vegas, LA, Monterey, and my favorite: Morro Bay.  Yet we don’t have to leave town to have an adventure. Even going to the grocery store (Tuesday mornings, mostly) is fun just because we are together.

All that changed on January 4, 2014, at ten-thirty at night: the surgeon walked into the ER exam room and told us: he has colon cancer.  We spent the next two hours, alone together, in that darkened room, thinking.  And praying. Each time I started to cry softly, he would squeeze my hand and say “I love you.”

It has now been almost five months since that fateful day.  To us, it seems like a lifetime.  In the beginning, there was numbness, with resolution.  “We will fight this” we would say.  He said he would do whatever was necessary to help himself get well.  I said that, if love could cure his cancer, he would be cured.

The early months were a maze of doctor visits, tests, labs, and trips to the pharmacy.  I started a binder to keep all of the pertinent information together and to record his journey.  At nearly five months, the binder is two inches thick…

As he began chemotherapy, we were hopeful: he had chemo for three days every two weeks.  By the end of chemo week, he was beginning to bounce back.  By the beginning of the week off from chemo, he was nearly himself again…

But chemo is cumulative: each time he has chemo, he bounces back a little less.  Each time he has chemo, his chances of having all the nasty side effects increase.  Now that he has completed nine chemo sessions, bouncing back is minimal…

Now we plan our outings more carefully.  We have to optimize his chances of enjoying what we are planning to do.  And now, we mostly just go to the grocery store on Tuesdays…

It’s all doable, we both agree.  I tell him that we will look back on this time and realize how hard it was, and rejoice that we made it through and he is getting better and stronger.  His lab numbers seem to verify that he IS doing better, so maybe all the suffering now will have a big payoff later.  I hope so.

It doesn’t bother me that his hair is falling out.  Or that he tires easily and has to nap frequently.  I look at him, nearly forty pounds lighter than a year ago, and I have grown used to it… His gaunt face is a reminder, to me, of the battle he is waging.

But sometimes I hate what has happened to him.  Sure, the massive chemo drugs he is being given have improved “his numbers” but they have taken such a toll on him physically.  And when I see that, it is like a fist to my gut….

Last night, as I walked into the kitchen, he was getting some plastic wrap out of the drawer.  My “what are you doing” was met with his explanation: “I fixed myself something to eat but I can’t eat it…..”  Sitting there on the kitchen counter was a lovely salad: lettuce, tomatoes, and sliced chicken, untouched.

I was so angry!  The irony of it all: here is a man who, more than ever, needs nutrition to help his body fight the cancer AND the chemo and he can’t even eat.  Why?  Mouth sores.  Mouth sores that are unabated by “magic mouthwash” and Orajel.  “What can I do to help him?” I asked myself…

The truth is, there is nothing I can do except support him, love him, find some more liquid nutrition for him…..and pray.

And I pray mightily.  Day and night….

Hotter Than Hades...

It’s cooler this weekend that it was last week, and I’m glad for that.  I can’t really complain: we have insulated windows and air conditioning.  It’s just the pits to go outside when the sun is out….that’s all.

As I tried to go to sleep last Saturday night, it was too warm to be comfortable.  Sleep did not come easily.  

 I found myself remembering a long-ago encounter with a patient and reliving it in my head.  Not just remembering it: analyzing it to figure out how I could have done it better…

Have I mentioned that I think too much?  I do….

So, it was about ten years ago, on a very hot, muggy evening.  I was the nurse on call for my home health agency and there was a little boy who needed to be seen and given antibiotics at six in the evening.

He was so little.  About four years’ old, if I remember correctly.  His skin was very light colored, and his huge, brown eyes were dull, not shiny.  He had been home from the hospital for about an hour when I arrived.

I must have looked like the circus came to town, hauling in a box of IV supplies and dragging an IV pole behind me.  Usually, the infusion company would deliver the IV supplies but I didn’t want to have to wait for them, so I picked them up myself.

His mother spoke only Spanish, so my interpreter was his six-year-old sister.  As I assessed the little boy and asked the required questions, I began to realize just how hot it was in their apartment.  I began preparing the IV infusion, and prayed that I would be able to start his IV on the first stick.  (Some well-meaning RN in the Peds Unit at the hospital was “afraid” to send him home with an IV needle, so she took it out….)

I excused myself to go to the kitchen to wash my hands before doing the IV, and there, on the counter, was a slab of brown-gray meat covered with flies. Apparently, mom was defrosting it for supper. Knowing that the little boy was hospitalized with sepsis, I wondered if the family food preparation practices had anything to do with his condition.

Should I say something to Mom?  Could a child-interpreter really do justice to what I had to say?  Was it really something I needed to address, or was I out of line? As the visit unfolded, I realized just how much this young mother was overwhelmed with her son's illness.  And life, in general...

I returned to the patient’s bedside and started his IV.  I needed to stay until the infusion was complete and discontinue it.  Another RN would come to the home the next day and do the infusion again.  Since it was only for three days, and since there was a significant language barrier, it was decided that we would not teach the mother to do the infusion.

I could feel my uniform sticking to me, wet with perspiration in the stifling heat of that little apartment.  My patient was sleeping now and it was quiet in the room.  Mother sat staring at nothing and stroking her son’s hair, soothing both of them.

Suddenly, there was a loud BANG as the front door slammed shut.  Mom stood up with a look of panic on her face:  her husband was home and she had forgotten to turn on the air conditioning so he would be comfortable.  She ran and turned it on as he walked towards the bedroom.

I turned around and looked up to see him glaring at me.  He turned to his wife and asked her, in Spanish, “Who is this woman and what is she doing to my son?”  I was genuinely concerned by his demeanor.  Mom explained to him that I was a nurse and that I was giving him his IV medications.  He said, in English, “no more! Finish what you are doing and NO MORE!”

What to do?  I decided to be as blunt as he was.  I explained that the ONLY reason his son was able to come home from the hospital was because a home health RN would come administer the remaining antibiotic doses.  If he would not let us do it, his son would need to go back to the hospital.  Or risk becoming very ill again...

After a heated discussion with his wife, in the hallway, he came back in and said: "OK.” 

 

I walked out into the warm evening relieved.  The visit was over and, although I had a couple of hours of documentation to do on the computer, the worst of my evening had just passed.  I chastised myself for not being…..whatever it was that I thought I should be.  I didn’t feel comfortable about that home situation but I didn’t know what to do…

All these years later, I can still see that little boy and his mother and sister.  I can’t remember dad’s face that well, but I will never forget his voice.  Was I too intimidated to do the right thing?  That was the question that went through my head over and over last week…

And I still don’t have an answer…

Cali

Out of the Dark

It’s hard to describe how I feel today.  It’s beyond hopeful, more like joyful.  As I have been saying for almost a year now: I am on my way.

Where?  You ask.  There is no easy answer but, “out of the dark” describes it to me.  Out of the dark that was my life last year.  For a year after I retired, I was in daily pain, spiraling into a deep depression, and full of self-doubt and self-loathing.

During the time that my back injury was treated as a Workers’ Comp issue, I had physical therapy and several spinal injections.  The first two spinal injections provided some relief for a few weeks.  The final injection was terrifying, merciless, and of no use: the pain was greater, not lessened.

And so, I retired.  To what?  A loving husband, a nice home, and a constant state of pain.  I couldn’t take a step off a curb without serious pain in both my knees and one or both hips.  I couldn’t walk very far without becoming winded.  I was eating the same as I did when I was healthy, active and pain free and the pounds were adding up.

I couldn’t look in the mirror.  And I made jokes about my wardrobe: “it’s not hard to find something to wear because very few of my clothes fit!”   Hahahahahahahaha…..

Or not….

My physician sent me to a rheumatologist: he offered suggestions that were immediate and addressed the “now” and not just the future “when you lose all this weight.”  And I was humiliated beyond belief: I hadn’t weighed myself in years and the numbers on the scale were frightening.

I came home resolute: I will get beyond this place and get my life back again.  I signed up for Weight Watchers Online the very same day.  I was overwhelmed by the task at hand and the changes I had to make.  At the same time, I was determined to do something for myself so that I didn’t have to be ashamed of how I looked and felt.

It’s been a slow process: ten months and counting, so far.  But I can see the light at the end of the tunnel and, if it’s not just a freight train, I will keep heading toward it.  One day at a time, one step at a time, one meal at a time, and one pound at a time….

I have lost more than forty pounds.  I am four sizes smaller than last summer, and I have LOTS of clothes to wear.  In fact, there are so many choices that I don’t know where to begin sometimes.  And isn’t that a lovely dilemma?

Out of the dark and into the light.  It’s a glorious feeling.  My depression is mostly gone, my activity level has improved: going to the gym, hiking in the mountains, and walking any chance I get has helped me realize the progress I have made.

There is no magic pill.  No diet.  No sacrifice.  What little I have had to give up (Diet Coke and sweets come to mind) is far outweighed by my sense of well-being and my ability to move and do and be, once again.  

The darkness that was retirement life in pain has given way to the light that is enjoying every day for what it is and smelling the roses along the way.  As Nora Ephron admonished: I am once again the heroine of my life and not the victim…

And it feels good….

Cali

Gym Tales

(Another blog from my archives...)

He walked out of the elevator with his wife by his side.  Gripping his walker, he willed his weak left leg to move forward.  Each step took time.  His wife looked as if she had all the time in the world….  Wearing a ball cap, backwards, he looked straight ahead as he walked.   There were no emotions visible on his face, just determination…

Probably in his mid-fifties, he thin and muscular, as if he was very active—physically—before his stroke.  His hands grip the walker as he moves, his knuckles white from the effort.  At last, he reaches his destination: a weight machine that will firm and strengthen his triceps. 

Slowly, thoughtfully, he moves as close to the seat of the machine as his walker will let him.  Finally satisfied that he can make it, he grabs the machine and plops his rear end in the seat with a thud.  Hovering nearby, but not “babying” him, his wife moves the walker out of the way.

She pulls the handgrips up toward him so he can grab them.  He moves quickly to place his right hand on the grip, firmly holding the machine.  His wife picks up his left hand and places it on the grip, smoothing his fingers around the rubber grip.

He tries to life the weights, but it is too heavy.  His wife reaches down and moves the pin, decreasing the resistance on the machine.  Again, he tries to lift the handlebars and he is successful.  His right arm bicep and triceps are flexed and doing most of the work.  His left hand stays in place on the left grip.

His wife walks over to the nearby chairs and sits down, waiting for him to finish with the machine.  This is repeated many more times as he works on other machines in the gym.  I have seen him at the gym many times, and he uses the machines that strengthen his core and his upper body. 

As I watched him, I was awestruck.  I have cared for so many stroke patients in my life, but few with this level of determination.   Few who have continued to work out after finishing physical therapy.  Few who had a wife who would help.  Few with a caregiver who could assist without taking his dignity away….

There are many other “tales” at the gym.   Tales of overcoming debilitating physical conditions.  Tales of triumph after tragedy.  Tales of determination, and will, and hope. 

Tales that make me smile…..

Cali

Planting Seeds...

I wrote a blog, a few years ago, and published it on Eons….of course, it’s gone.  I was reminded of it today by something that came in the mail.  But let me tell you what I blogged back then, first..

In the early Nineties, I was the Charge Nurse in the Operating Room at the local hospital.  We had  eight operating room suites on the first floor, and two in Labor and Delivery.  Additionally, during my tour of duty, the hospital opened its Open Heart Surgery services.

Also during my tenure, many of the scrub techs went back to school and became RNs.  And many of the RNs took their training to become RNFAs: Registered Nurse First Assistants.  That was the time of big changes in the OR, insurance companies were no longer paying MDs to “assist” surgeons with routine surgeries….  And so, RNFAs took on that role.

One person I remember fondly was Noel.  I called him Noelito because he was Hispanic and barely 18 at the time he was hired to work in the OR as an orderly.  His job was to go fetch patients from the nursing units and bring them down to the OR holding area.

 

When patients were transported directly back to their nursing unit, without going to recovery, Noelito would assist the RN who had to accompany the patient and give report.  He was always busy and always willing to help anyone who needed help.

In the holding area, he would take time to make the patients comfortable, bringing them warm blankets and getting a nurse to answer their questions.  I was quite impressed with his demeanor and with his work ethic.

One day I brought him a book, an English-Spanish dictionary for medical workers.  Since he was Hispanic, patients naturally started talking to him in Spanish, a language he could not speak.  As he was standing at the desk in the holding area, determining what he needed to do next, I approached him and put the book down in front of him.

He looked up at me, and I knew he needed an explanation why I would buy a book for him.  My reply was simple: “you can go far in this world, if you want to…”.   He carried that book in his pocket all the time and I saw him looking up words in it more than once.

I mentioned in my previous blog that I was planting seeds with him.  I don’t think he was aware of how much he had to offer, or how much he was capable of learning.  I wrote that blog because I had seen Noelito at the mall.  Not Noelito the orderly, but Noel, the RN.  Since my departure from the OR, he had gone back to school, gotten his prerequisites done, and entered the nursing program.

I forgot to ask him if he still had the dictionary—the seed—that I gave him…

In today’s mail, I received the quarterly magazine from the hospital.  One of the articles was about their new Endourology services and equipment.  In the photo, dressed in an OR gown, gloves, hat and laser goggles, was Noel, RN.  But not just Noel, RN, anymore: he is now Noel, RNFA, having completed that advanced training, too.

I am not going to take any credit for his accomplishments.  He is the one who did all the hard work of going to school and working fulltime.  He is the one who balanced his new little family, his job and his schooling.  And he is the one who graduated, took his boards, and passed.  And then decided to get some additional training, too….

All I did, I think, was plant the seed….

Cali

Ordinary Days...

Today was just a day.  Just like any other, more or less.  For me, anyway….

Yet, as I think about it, I can’t tell you how many babies were born today.  I do know that we have surpassed 7 billion people on this planet….  And I don’t know how many people died today, but quite a few, I’m sure.   So my own, ordinary day, was somebody’s birthday.  And someone else passed on from this veil of tears.

Perhaps it was the actual birth day of someone’s long-awaited baby.  Or perhaps it marked the end of suffering and pain for someone else’s beloved family member, or friend.

And today, somewhere, somebody moved into their new home, making their dreams come true.  And someone else was forced to leave his home, after fighting foreclosure.  And still someone else lost their home to a fire, or a flood, or some other natural disaster.

Today, somebody ate too much, and promised herself she would go on a diet tomorrow.  Someone else has an aching emptiness in his stomach, from day after day of not having enough to eat.  And somewhere else, a teenage girl looked in a mirror and saw a “fat pig”……and won’t eat anything at all.

Someone is recovering from surgery today.  Some surgical procedure was done that was not even heard of twenty years ago.  A life saved.  And somewhere, the organs were harvested from someone who lost their fight for life, and in return, their organs will save the lives of countless others.

Somewhere, a father hugged his child today.  A mother picked up her children at daycare and took them home and fixed their supper.  And somewhere else, a mother sobs unrelenting tears, frightened and separated from her child.  Somewhere, a kidnapped child is living the terror that no child should ever know.

Today, a child received an award in school for being the best at math.  Or language.  Or sports.  And elsewhere on this little blue ball, another child sits in the dirt and longs to be able to go to school and learn.  Today, a teacher inspired a young mind to grow up to be a scientist and discover the cure for cancer.  And today, a scientist in a research lab got one step closer to a cure for diabetes.  Or muscular dystrophy.  Or asthma.

As I sit here, complacently, thinking that I had a good day but an ordinary day.  People all over the world are proving me wrong.  Life is not ordinary, even on the most ordinary day.  It is a fascinating dance between us and this thing we call Life.  It is as much, or as little as we make of it…..

There are no ordinary days….

Cali

Perspective...

Well, I was running errands again this afternoon….  He went to the dentist, so I took advantage of the opportunity to shop alone…..and buy his birthday gift.  (Can’t tell you more: he reads my blogs!)

As I drove, I was thinking about all the things I want to accomplish this week: more painting, shopping for groceries, preparing a Red Velvet cake for the birthday party on Saturday, working on my scrapbooking and, and, and so many other things.

Not feeling bad about it, just a little pushed for time.  You know how that is: more to do than time to do it.  And so, I’ll probably compromise and put something off until later.  That’s perfectly fine, too.

With my head full of thoughts, I pulled up to a stoplight.  The car in front of me had one of those custom license plates.  It was a nondescript car, a Saturn Vue, I think, but the license plate stood out boldly, to me.  The actual plate was the one with the American flag background, with the letters “TR WARD” on it.

On the license plate frame, on the top, it said “My Son” and on the bottom, “2/14/63 – 9/11/01”.  As I read it, I felt unable to breathe, almost……

Sitting in the car in front of me, at the stoplight, was Tim Ward’s mother.  Although he was living and working in Los Angeles at the time, Tim was from Podunk and graduated from the same high school as I did, and my kids did….

I felt a pressure in my chest, and tears welling up in my eyes.  How silly of me, or not.  As I sat at the light, trying to figure out how to get so many things done, the woman in front of me was dealing with something much more important.  Tim Ward was on the first plane that crashed into the Twin Towers on that terrible day…

I had the urge to get out of my car and go hug her, but the light turned green and we were off on our own separate ways.   I said a little prayer for her, wishing her peace….

And I haven’t stopped thinking about her since…  Sure puts my life in perspective…

Cali

Taking Things For Granted....

Not a good idea, if you ask me. There are no guarantees in life.

Special moments can be fleeting, with lots of time in between. They must be savored when they happened, and remembered for as long as possible.

I went back to work on Thursday. It's been more than seven months since I was able to see patients and give them nursing care. I cannot believe how much I missed it. Perhaps because I have been doing it for thirty-five years, it was an integral part of my life that was missing.

And the time off was not a “practice” session for retirement. When I no longer need to work, and cannot continue doing the difficult work I do, it will be a celebration for me. Conclusion of a time in my life. And an end to the daily drudgery of having a job.

For seven months, I had no purpose, other than to get well. I had no direction, other than to try to get back to work. Just as I could not do the tasks I needed to do at work, I couldn't do those things I wanted to do at home.

Retirement will be different. It will be my choice. My logical next step. On my terms. And, instead of going out with back pain, I will go out with a sense of accomplishment. I will complete the job I started, so many years ago. And I will start my next job: enjoying my life and my love in a relaxed, retired setting.

Somewhere....

I will watch the sunset, and maybe a sunrise or two. I will relish life's little joys, and somehow, get through its sorrows. I will be me, I will be free, and I will enjoy what life brings.....

Every day.

Cali