Journal: May 2002

Tish goes to the local island church on Sunday morning.  She is feeling a strong urge to be with her family, her parents and, now, ten siblings.  I think that she is also aware that her preoccupation and grief are ultimately not too healthy for me, not during our holiday.  She decides that she would rather leave on Monday.  I call United Airlines and they accommodate our request without any penalty.  We take a walk along the ocean, marveling at the amount of shells, sponges, plants, and driftwood that find their way to the sandy beach.  Later we drive into Savannah and walk along the historic riverfront district.  The hyacinths are in full bloom in the botanic islands that dissect some of Savannah’s main avenues, canopied by the great limbs of live oaks hung with Spanish moss.

Back at Tybee I fix dinner as Tish reads.  We decide that we need to leave the condo by 6:15 AM in order to be on time to check in and purchase her ticket for the 8:10 flight from the airport that is thirty miles distant on the opposite side of Savannah.  When I awaken on Monday morning and glance at my watch, I see that the time is already 6:20. A mad dash about the condo and a frantic run into, then across, then out of the city gets us to the airport about 7:30.  Security is tight in this smallish airport.  Our car trunk is searched as we approach the airline terminal.  A security guard approaches to questions me as I wait in the car curbside to make sure that Tish has no trouble at the counter claiming her ticket.

I return to Tybee, tired from too little sleep.  I spend a restful day, snacking, reading, and watching the ocean.  Late in the afternoon I walk along the beach taking photographs in the setting sun.  I drink one of the local Georgia beers that I had bought earlier.  Beer sure tastes good but I still find it difficult to finish even one bottle since my illness.

On Tuesday morning I make the three-hour drive to St. Augustine, Florida.  It is beautiful sunny day.  The trip brings back memories.  We stop there in the country’s oldest city each year on our family vacation.  As soon as I step from the car at the Visitors Center, I discover that Florida stills holds magic for me after over thirty years of visits.  Even though the state is now overdeveloped, it has rocketed from 37th in the nation in population in 1960 to 6th or 7th now; it has a psychological hold on me.  The sky is bluer, the sun warmer, and the air hints of salt and sealife.

I visit Sailor’s Exchange at the edge of the old city where every surplus and salvaged sailboat part imaginable can be found.  I buy books, small items, boat wax, a T-shirt, and a ship’s bell.  I could have purchased more if I knew what I needed for the Bayfield.  In Savannah over the coming week I will visit every boat chandler to purchase sale and clearance items.  I imagine that when I return to Indianapolis spring will have arrived and I will spend solid days working on the Bayfield.

Later I visit a local marina just to be near sailboats and people that spend their lives cruising in them.  I make our traditional stop at the local used bookstore on King Street.  I look into an evening cruise on a steel schooner sailing out of City Marina.  I cross the Bridge of Lions and drive out to the beach, to the pier that always offers us our first sight of the ocean surf.  I find an open-sided restaurant called Seabreeze Cafe where I sit by the open window and order a flounder sandwich, fries and Foster’s beer.  I drive back to the marina as weather approaches from the western sky.  At the docks I learn that the schooner will not go out for the later afternoon cruise due to foul weather warnings.

Frustrated I return to A1A, the famous highway that runs along Florida’s east coast.  I drive down thirty miles down to Flagler Beach with the weather chasing me.  The surf is kicking up.  I take a few photographs from the beach as dramatically darkened blue-gray sky overtakes the land, the narrow beach and then the water.  Huge drops of rain begin to fall as I reach the car.  The drive back is long but the day has been satisfying.  A whole day by myself, a genuine adventure for someone who has grown used to people trying to take care of him.

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Journal: May 2002

We unload the car.  Tish carries up most of the things.  Unfortunately we are on the third floor.  One or two trips are all that I can manage.  I am very winded when I reach the top and have to sit down.  We take a nap for a few hours.  In the late afternoon I am out on the deck, reading and watching the ships.  The phone rings and Tish answers.  She is talking about our drive down so I assume that it is one of her family.  I become lost in my reading until I am aware of a woman sobbing.  At first it seems to be coming from the floor below.

Then I realize that it is Tish.  I enter the living room where she is still on the telephone.  I listen and gather from the conversation that her brother, David, has died.  He was only forty-nine but had been suffering for six years from cardiac problems and more recently congestive heart failure.  He has been a patient in my hospital twice in the previous two months, arriving by ambulance in cardiac or respiratory arrest.  But recently, after insertion of a Pacemaker and two cardiac balloon procedures, he seemed to be on the mend.  He had stopped smoking and was active in a cardiac rehab program.  But this is what my nurse colleagues in cardiac care tell me.  Their patients can be doing fine, sitting up, playing cards, entertaining visitors, or readying for discharge one moment, then flipping into complete arrest the next moment.

This is one gift that we persons with cancer are given.  We usually have time to see it coming, time to prepare.  And time is a gift that we never fully appreciate until our own measure of time is almost exhausted.

I try to comfort Tish, knowing that there can be no comfort given.  Over the next few hours we talk, make phone calls, and arrange to fly Tish home for the funeral. She is to fly out on Tuesday morning and return on Thursday afternoon.  United Airlines gives us a generous bereavement fare.  Our first night on Tybee is fitful and wrenching.  This is especially difficult for Tish.  Not only has her younger brother died but she is also made to be painfully and viscerally aware that someone close to you, someone near your age and in otherwise good health, can succumb to death.  It is I, her husband who happens tp suffer from a rare, aggressive leukemia, who lies beside her through this night of sorrow and grieving.

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Journal: May 2002
On Wednesday morning we take our sixteen year old, Aaron, to the airport.  He is flying to Russia with a group of teenagers with diabetes accompanied by his diabetes doctor.  He made a similar journey last year.  He will stay in a Moscow apartment with the family of a thirteen-year-old girl with diabetes.  This trip has given Tish and I the opportunity for our own vacation.  Her sister and brother-in-law own a condominium in Tybee Island, Georgia, outside of Savannah.  The condo is at our disposal for ten days.
I am known as an easy-going person, calm and unflappable even during a crisis like a Code Blue situation.  But without Tish  and all of my friends and colleagues, I might well have decompensated under the stress.  I had not required either antidepressants or anti-anxiety drugs.  I had found that I was able to be nurtured, sustained and kept largely whole by the love and compassion of others.

It is time for Tish and I to relax, to escape the nightmare that began in early December.  On Friday Tish needs to work at her office until noon.  Sundry errands delay us and we are not able to finally leave the city until 4:00 PM.  We have dinner in a cold Tennessee Pizza Hut.  My uncomfortably cold hands remind me of my persistent anemia.  When we feel like stopping for the night, we discover that all hotels in a 200-mile radius are either booked, have raised their rates, or are not honoring AAA or AARP discounts.  This due to a big Nascar race the following day.  So much also for the discount coupon book we picked up at the Tennessee Welcome Center.

I decide to continue driving until we are clear of the race area.  But by then it is 1:00 AM.  I am curiously not too tired any longer so I continue to drive.  I am able to drive until just before sunrise when Tish takes over for the last hundred miles.  The car is running well.  Aaron and I serviced it the Sunday before, including a wax job.  When I awake we are just entering Savannah.  We stop at the Publix grocery store, as suggested to us by a colleague of Tish familiar with the area, before going out to the island.

Tybee is an island only in the strict sense of the word.  It is only separated from the rest of the state by a series of shallow salt-water creeks at high tide.  At low tide it largely reconnects with the mainland by narrow mud flats.  But the drive from Thunderbolt outside of Savannah to Tybee is across a low highway built up on the salt marshes.  A sign warns that the roadway can be covered by water during extreme high tides.  We pass Fort Pulaski, thought impenetrable at the beginning of the Civil War until the new rifled union guns on Tybee, over a mile distant, were able to breach the walls.  Such forts would no longer be built and warfare was forever changed after that battle.

Tybee Island is a sleepy resort community and we were at the sleepy end of the island.  There is only one main thoroughfare.  We were well off that, near the Tybee lighthouse, on the water where the Savannah River meets the Atlantic Ocean.  Over the next week we will watch huge tankers and container ships entering and leaving the shipping channels in the river, being steered by local pilots who motor out to meet the ships offshore.  The land that we see to the far north of our condo, out across the broad waters, is Hilton Head.

cancer

Journal: April 2002
I fretted over the next four days, finally resolving to ask for the biopsy to be done the day before we left for our holiday.  That way I would have the results as soon as I returned.  On Monday I was prepared to relay my decision as well as to ask a few more questions.  When I brought this up, I was told that Ray was on a skiing vacation.  And when I tried to make an appointment for the week before our own departure, I discovered that he had no openings.  The front office staff said that they might ask him when he returned if he wanted to work me in. But I pouted and acquiesced to accept the next available appointment, April 8.

Marie brought me on the last day, Monday, March 11.  Tish would meet us later for a celebration lunch.  My sister, Barbarann, accompanied Tish to the clinic in late morning.  My mother had had a hip replacement the week previously and was convalescing in a rehab hospital a few blocks from the cancer clinic.  By the time they arrived, Donna told Tish that I was not myself, having been upset that my doctor was not available to me.  I had my share of grouchy or depressed days when I could not or would not muster my usual deliberate good cheer.  The nurses read my moods.

I knew that the next month would be a long one.  I worried that I would have difficulty enjoying my holiday.  By the following Monday, however, I seemed to be adjusting to the uncertainty of my condition.  I told the people in the lab that I would not be back for a while. Everyone wished me well.  My hemoglobin was still down at 8.4 so I received a Procrit injection.  I had the nurse remind Ray that we would be away on holiday for the next two Mondays.  And even though my white cells were at their lowest point ever – 0.9 – Ray decided that I did not need Neupogen this time.  This would leave me, departing on holiday, very vulnerable for infection.  The first sign of infection, even a fever, would send me to the emergency department of the nearest hospital.  This communication took place with a nurse as intermediary.  And this communication, like all communication taking place through a third party, seemed less than satisfying.

I left the office with two syringes and two vials of Procrit.  The nurses expressed hopes that I would find my ten days at Tybee Island to be a relaxing respite from the rigors of cancer treatment. Donna hugged me as I left and gave me her home phone number in case I ever needed anything (writing her number, as nurses are want to do, on the closest thing at hand, the ever present alcohol wipe package).

What will I do now?  Treatment was deeply woven into the fabric of these last three months.  I was partially defined by my status as an active cancer patient.  Who would I be without the need for trice weekly clinic visits?  Not a nurse.  Not a patient.  A normal person?  (What is a normal person?  For me the answer is simple – a normal person is one without disease.)  So not a normal person.  I still have leukemia.  I am aware of that fact every hour of every day.  So where is a person with leukemia who is not in active treatment and who does not know the status of his disease?  I am in limbo.  And it is something that I need to deal with though it seems at this point to be harder than being a patient.  Limbo.

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