September 26, 2005

 

Dear Friends and Family,

 

It’s so good to be at home, hobbling around with my cane, stretching  constricted muscles, popping a few less pills, and hitching up to just one IV a day.  Progress! 

Jim and I had dinner last week with old, and I mean old, friends to celebrate Paul’s 59th birthday.  We commented on how age doesn’t creep up on you, but sweeps down like a black vulture.  We counted up the years we had known each other:  36 years with Dan, 29 years with Paul, 22 years with Mark. 

After we caught up on the latest news, Mark asked me, “What is the biggest lesson you’ve learned during the past 20 months?”  I paused to think; there were so many lessons learned along the journey.  I finally answered, “Accepting the love and care of so many.” 

“What do you mean?” Mark replied.

I said, “Having a double-A, self-sufficient personality with control issues, who likes things done in order, it was hard to surrender my pride and allow people to come to the house to clean toilets.” 

“Did your attitude change?” Mark wanted to know.

“Absolutely.  One Saturday, when the cleaning crew arrived, I said something like, “This is so embarrassing.”  A woman in the group looked at me and said, “Don’t take this gift away from us.”

It is difficult to be weak when you’ve always been strong.  It is humbling to let friends and family serve you when you’re the one who’s always served in the past. 

The biggest spiritual lesson I’ve learned was penned by C. S. Lewis:  “You do not have a soul.  You are a soul.  You have a body.”  I’ve learned our bodies are just shells.  Mine worked well for 51 years then started falling apart like an old car.  My bumper is gone, my fuel injector is clogged, my exterior has lost its luster, and my engine lurches on fumes.  I don’t think the warranty is still good. 

I’ve learned that family and friends are the greatest treasures in life.  They bring us pain sometimes and great joy most of the time.

Melanie, the best stylist in the world, cut my curls a few weeks ago.  We hadn’t seen each other in almost a year.  After a tight embrace, she ruffled my twisted locks and laughed.  “Oh, we’ll have fun with this!”

Having someone wash your hair is one of life’s pleasures.  I nearly cried under Melanie’s strong yet gentle fingers rubbing my scalp, massaging my neck and asserting pressure on my temples.  How wonderful to be in the care of someone who loves you.  Melanie did her magic with scissors and gel, and I left feeling like a new woman.  That’s what real friends do: bring out the best in others and assure them of their worth. 

On Sept. 6th, I had yet another bone marrow aspiration.  Once again, like tradition, Bonnie drove me to the clinic.  Only, this time she wasn’t allowed to stay in the room for the procedure; some new law prohibited it.  I remember the nurses injecting the first dose of sedation (thinking, “This stuff is yummy”), saying goodbye to Bonnie, and lying my head on the pillow.  The next thing I knew, it was 7:30 p.m. and Jim was waking me up for dinner.  After a few hours of conscious, I went back to bed and slept till 1:30 the next afternoon.

I called Bonnie to ask what in the world had happened.  She immediately started laughing and told me a whopper of a story.  A bone marrow aspiration usually takes about 15-20 minutes.  Bonnie said she waited for 15 minutes, 30 minutes, then 45.  An hour passed before the nurse came out and sat next to her.  “The good news,” the nurse said, “is her bones are thicker.  The bad news is that it was harder to get to the marrow.  We had to repeatedly insert the needle to find the right spot and since it took so much longer, we had to keep giving her anesthesia.”

They gave me enough to drop a water buffalo.  Bonnie told me (I’m sure she wouldn’t lie) that when I was handed the release form to sign, I stared at the paper for while.  Bonnie moved my hand down to the designated line, and said, “Sign here, Janice.”

So I made a tiny capital “J” and teeny little “a,” and signed my name in a size only a mouse with glasses could read.  Then I stopped, looked at what I had written, began doodling above my signature, then started coloring in the empty spaces in the hospital logo at the top of the page.  The nurse said, “Uh, Bonnie, why don’t you sign for her.”

Getting into the wheelchair was an ordeal because I assured them I could walk.  I couldn’t.  Bonnie maneuvered me and the contraption to her car, hoisted me into the passenger seat, fastened the seat belt, then lowered the seat back.  “Why did you put the back down?” I asked.  “Because you’re going to sleep,” Bonnie replied.  “Oh.  Okay,” I said.

Bonnie said that I talked incoherently all the way home, with brief lapses of silence.  I made absolutely no sense, yet Bonnie would reply, “Uh-huh," "OK," "that’s good.”  Once I sat straight up, looked at Bonnie and said, “Jim’s book is going to sell more than mine and I’m going to be really pissed.”  Then I laid back and fell asleep.  Bonnie laughed her butt off. 

I don’t know how the 6-foot woman hauled the 5’3” me up two flights of stairs to the bedroom.  I can’t even imagine the contortions.  Bonnie tucked me in bed, kissed my forehead, and said she loved me.  I told her I loved her and not to forget to get the books out of the office (we had discussed them on the trip to the clinic).  Sheesh.  I could barely write my name, but I remembered to remind Bonnie to pick up the books.  Interesting how the mind works.  Some days, not so well.  Other days, there are signs of firing brain synapses. 

After the aspiration, I could hardly walk, let alone do my exercises, so it was a non-eventful week.  On Sunday afternoon, the 11th, Jim and I were watching a movie at home, me in my leather chair, curled under a blanket, Jim on the couch.  All of a sudden, I was chilled to the bone and goose bumps popped out like measles.  Then my heart started to pound, triple time, and with each beat, a stabbing pain.  I began to breathe slowly, uncurl my body and stretch my legs.  Jim noticed I was flickering about and asked if I was all right.  If someone else had asked, I would have said I was fine.  But since it was my beloved Jim who asked, I burst into tears, and sobbed, “No.”

The next few minutes were a flurry of tasks:  call Vanderbilt, receive instructions to go to the nearest Emergency Room, pack a toiletry bag “just in case,” then speed to one of my favorite resorts, Williamson Medical Center.  By the time we arrived, signed in, waited, answered the nurse’s questions, took vital signs, and was hooked up to the EKG, of course, the pain was gone.  Since

I’m an oncology patient; they kept me overnight for observation.  To sleep, I was given enough morphine to drop an elephant.  The next morning, I had a CT scan, chest x-ray and ultrasound of my legs, all to look for blood clots.  None were found.  The next guess for what caused the heart palpitation and pain was an electrical malfunction.  So now I sport not only a catheter but wires attached to separate pads, one on each side of my chest, both wires attached to a monitor.  If I have another “episode” I am to push the record button on the gizmo and it notates the rhythm of my heart for 15-20 seconds.  Then I go to a telephone to transmit the data, which is interpreted and sent to my new cardiologist.  After two glorious days and two tranquil nights at Resort Williamson, and harnessed with yet another machine, I was discharged. 

On the 15th, new lenses were put into my glasses frame.  When I put them on, I was instantly disappointed.  I anticipated that I would be able to SEE.  But I’m still mostly blind in my right eye, and my vision is still blurry in my left.  I fought to hold back the tears.

A few days later, my oncologist asked if my sight had improved.  I honestly answered no.  He assured me that I could get a second opinion, even different lenses, but no invasive procedures.  He told me that the best place in the United States for eye care is in New York.  Who knows: we may expand our journey from Nashville to Seattle to New York. 

I talked with another old California friend this week, who said, “You are writing some great fiction.”  “What?!” I asked him.  “You’re writing great fiction in your updates.  No one could possibly have so many things go wrong.”  I laughed and told him that it was a good thing he was 2,000 miles away or I would deck him.  Trust me, there is no fiction in these updates, unfortunately.  I don’t need to embellish or “punch up” the story.  Truth is sometimes stranger than fiction.

I’m not exactly a fashion diva these days.  I still have to wear tight support hose to keep my feet was swelling; of course, they’re a conspicuous white.  Most of my new clothes were purchased at Costco.  Instead of suits and high heels, I’m clad in elastic-waist, jogging-type clothes and athletic shoes.  I’ve never worn flat shoes in my life and didn’t even own work-out clothes before we went to Seattle.  I'll know I’m well when I slip on a pair of sexy heels and don’t fall over.

Other than that (as in “Other than that, Mrs. Lincoln, how was the play?”), things are progressing well.  A few steps forward, a few backward.  When I start to throw a pity party for myself, I am reminded of my oncologist’s words.  At every appointment, I introduce him to the wonderful woman who drove me to the clinic.  “You bring someone new every week,” he said.  “I have a lot of dear friends,” I assured him.  He nodded.  “You are blessed,” he said.  “You are blessed.” 

I am blessed.  Thank you for the privilege of loving you and being loved by you.

 

Janice

 

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