Sorry but I am off schedule again.  Maybe schedules for cancer survivors should not be that important anyway!  I have been very busy this weekend, however, bringing to fruition two projects that are dear to me.  I finally got over the bugs and slugs to launch not only a new feature for Being Cancer Network, but also a whole new sister website.

Diary of an Illness

Soon after my diagnosis in 2001 with what promised to be a terminal leukemia, I began to put my thoughts down on paper, well, virtual paper anyway.  I was driven by two impulses.  First I suddenly found that my rather boring life had changed for the worse.  Almost daily there was now something to write about.  A great drama was slowly unfolding and there was a growing number of people who wanted to hear about it – friends, family, and colleagues worldwide.   So I needed a vehicle to get the daily news out.  This was before the rise of blogs, before Google even.  If Caringbridge and other like illness journaling services were available, I didn’t know about them.

Secondly, with the known world crashing about me (this was just months after 9/11), I felt the strong need to try to make sense of what was happening to me.  I was only 54, my children were just starting to move out and seek their own place in the world, and my career as an oncology nurse had been rich and fulfilling.  I had even been working on a doctoral degree in nursing science.  My grandmother was living with us, still thriving at 104 years old.  And yet I was the one that seemed closest to dying.  Stop the world!  I want to get off! I wrote.

So this urge to explore, to discover and uncover the deeper meanings of what was happening to me merged with the task of informing my small world of acquaintances of my slowly unraveling medical drama.  And what was born of those divergent goals was something new and, for me, unique.  I have always been a quiet person, not given to sharing very much about myself.  In social situations, even family ones, I feel awkward and ill-at-ease.  In gatherings I tend to slink towards a quiet corner.  It was only in the role of a nurse that I blossomed, that I was able to be more fully authentic.

So now I found myself sending into the ether my deepest thoughts, fears, and hopes.  Of course, this was also the time in which I hugged nearly everyone I encountered!  My narrative was sent out in tiny bits and pieces – news and meditations floating out into space.  Next I began to coalesce these offerings into larger, more coherent chunks.  These chunks began to resemble chapters which I sent out not as email text but as attachments to my emails.  By the time I approached my first remission a larger narrative had been woven together.

I was well enough to attend the annual Oncology Nursing Society (ONS) Congress, held that year in Washington, DC.  By that time an idea had been born.  I remember mingling in a crowd of cancer nurses from around the globe, drinking wine and eating gorgeous shrimp.  We were attending a reception at the national headquarters of the Daughters of the American Revolution.  The building breathed with a sense of history.  I was standing just inside the limestone columned portico with it views of the mall.  Everyone was asking details about my health.  I started talking with Pearl Moore, one of the founding members and the executive director of ONS.  I told her about my narrative.  I told her that there seemed to be something of value there based on the feedback I had received over the past months.  My “diary” was something that I wished to share with the wider world of oncology nurses (ONS membership was nearing 25,000 cancer nurses).  Remember that though I was in remission, I felt that I had maybe two years to live if I were lucky.

Pearl introduced me to Len Mafrica.  We discussed my proposal in depth. ONS would agree to publish my journal on their website, in the publications section, as an on-line book.  And there it remained, until last year, when the space was turned over to other material.

I received a number of emails including one from a nursing instructor who had been using it in a course for some years.  They asked me how to access “Diary of an Illness” now and in the future.  By now I had had the rewarding experience of constructing my own website/blog, Being Cancer Network. So I secured the domain name, bought additional space on my server at Laughing Squid in San Francisco, and spent an anxious couple of weeks trying to make the thing work, ably assisted by Jason at Laughing Squid, bringing together files and programs, properly coded, and firing them off across the country with my Fetch FTP (file transfer protocol). Yesterday it all came together.  Launch successful.

In many ways Being Cancer is the child of Diary. In fact you might have read portions of it.  I published bits and pieces of it under the category “Journal”.  I have the first five chapters up and will be working to bring the rest up.  I covers diagnosis through and past my first remission.  And now I have the stimulus to continue the diary to my relapse and on to the great drama of my transplant.  I will keep you posted as new material appears.  In the meantime please visit the site at www.diaryofanillness.com.  Diary of an Illness – A Cancer Nurse Battles a Rare Leukemia

Events Calendar

I have though about adding a cancer Events Calendar for some time.  The trick is identifying events and keeping the whole thing up-to-date.  I finally hit upon a format that just might work, for me and for you.  I divided the calendar into three sections.  The first contains those ongoing, annual observations that we all are familiar with, like National Breast Cancer Awareness month.  The second section is a bit harder to manage.  This will feature meetings, symposiums and programs oriented towards survivors and caregivers.  I will be depending upon you, my readers, to inform me of regional and national events for survivors and caregivers. The last section will list conferences and meetings designed for professionals, physicians, nurses, and social workers.  Abstracts from these meetings, like the annual American Society of Hematologists (ASH), are frequently published at their respective websites.  These can be a source of the latest research and ,consequently, a point of discussion with your healthcare team.  As always I would love to hear what you think.

Book Club discussion will resume tomorrow, closing out Kelly Corrigan’s “The Middle Place”.

I apologize for getting off schedule this week.  I have another pesky viral episode – head cold, sinus infection.  When I haven’t been chilling, I’ve been sleeping.  So I am just going to slip in an episode from my journal.  I hope to be back on schedule in a day or two.

JOURNAL: MAY 2002

Monday morning, April 8, finally came.  I had called the doctor’s office on Friday to inquire if I was scheduled for labs.  I was told there were no labs ordered and that Dr. Markham did not typically order labs for a bone marrow biopsy.  I suggested politely that Ray was out of town when I made the appointment and that we needed to monitor my blood count at the very least.  They said that they would call him but cautioned that it would be late in the day.  Later they called to say that indeed Dr. Markham had added a number of labs: complete blood count, serum creatinine, liver function tests and LDH.

After the labs Tish and I went to sit in the waiting area, but Donna the Peach soon took us back to the “bone marrow room”.  Ray did a quick interview and exam. Then I lay prone on the exam table.  Donna, who had wanted to help me in the bathroom months earlier, was there to assist.  Ray asked Tish if she planned to stay in the room.  He agreed that she could stay but only if she did not get up from the chair during the procedure.

The lidocaine stung as it always does.  I tell every physician now about adding sodium bicarb solution to the lidocaine to reduce the stinging effect.  I was not particularly anxious about the procedure.  I myself had assisted with hundreds of them. Throughout most of the biopsy I was only aware of dull pressure sensations.  The first real pang of pain that patients feel is when the physician pulls back quickly on the large syringe in order to draw out the marrow.   Ray warned me as he was ready to aspirate but I felt almost nothing. I heard him ask Donna for another syringe which signaled some small technical problem.  He did not get much marrow he explained which is why I felt nothing.   I knew that his next attempt was more successful because the short but sharp pain arrived as promised.

Having my doctor as a captive audience, I talked and asked questions throughout – not to distract myself, but because of the real though ironic social aspects of the situation.  The last part of the procedure involves withdrawing the long aspiration needle – this is when I was aware of blood dripping down my side – and replacing it with a hollow needle about the size of a large nail.  This device has a T-shaped plastic handle that gives the clinician leverage to torque and twist the sharpened point down through the hard surface of the bone into the more porous marrow itself.  As the needle found its way home, the pain returned sharper still.  The clinician withdraws the needle, holds it over the solution-containing cylinder the nurse is holding, then with a thin rod pushes the core of marrow out the hollow end.  Ray described this specimen as “spectacular” which indeed it was, measuring nearly an inch in length.  A dressing to the puncture site and I am instructed to lie quietly on my back for fifteen minutes in order to apply pressure to stop any further bleeding.  Before she leaves the room, Donna squeezes my hand and assures me that the results of the biopsy will be good.

My counts have come back by the time I am ready to leave.  Ray returns to the room to tell me that my hemoglobin is 7.9, below the arbitrary level of 8.0 at which transfusions are typically ordered.  I agree with Ray that the Procrit is not producing stellar results.  I have been off treatment for nearly a month and have taken a Procrit injection each Monday since.  While arrangements are being made for my transfusions, I go to the treatment area to be weighed.  We see several patients that I know including my candy lady with the knit cap and talk with them.  I talk with Brenda, the other clinic nurse.  Donna tells me news of Susan’s husband who has been in ill health.

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Journal: May 2002

We arrived home in plenty of time to pick up Aaron at the airport.  He had been awake over twenty-four hours traveling home from Moscow.  He slept in late.  I did not.  I had a stack of mail, hundreds of emails, and a dozen phone messages.  There was plenty to do over the next few days.  Not the least of which was to start putting away the detritus of our trip that had filled up both the trunk and back seat of the car.  These included a box of boat supplies, eighty feet of one inch rope fallen off a ship and washed up on shore (probably during a storm as I found it half-buried high above the normal high tide line), a box of driftwood, sea shells, hermit crab shells, sponges and other beachcombing discoveries, a box of new used books, a box and garbage bag of items gleaned from my grandmother’s kitchen and personal items from her home in Florida, packed away for the past two years at a storage shed in South Carolina.  And this in addition to the items we left home with.

So I kept busy over the four days.  Tish had four tickets for a sneak preview on Friday night.  Both of the boys went.  Ben picked Aaron and myself up, driving us in his new car to meet Tish downtown.  We all ate in the food court of the downtown mall.  At the theater Tish thought that a woman in the row in front of us looked familiar.  It turned out to be Apra from Dr. Markham’s office.  Small world.  On Saturday we went to a friend’s birthday party.  I am usually shy at such parties.  I would have been at this one also, but spent the evening talking to someone I know, teaching about the intricacies of my leukemia and its potential treatments.  Sometimes I feel that all my conversations are about my disease.  And without it I would have very few interactions.

Tish and I went to Sunday Mass as there is a healing of the sick service on the first Sunday of the month.   Tish returned to work Thursday and Friday but was home for the weekend. Tish thought that I was getting a bit edgy, even grouchy at times.  I was aware that I was anxious to proceed once again, to get down to the business of dealing with my leukemia.

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Journal: May 2002

Wednesday is another quiet day.  But quiet days are what I need.  I buy a pound of fresh shrimp from a local fishmonger.  I boil it up, chill it down, and chase it with cold local beer as I watch ships entering the channel in the twilight. On Thursday afternoon I make the thirty-mile trip to the airport.  The time at home with her family has been cathartic for Tish.  Though I have spoken with her every day since she left, she recounts in greater detail the events and rituals and stories that comprised the past four days for her.  On Friday and Saturday we went sightseeing, including a dolphin-watching cruise off Tybee, followed by a seafood buffet at Bubba Gumbo’s on the creaky shrimp boat marina on Lazaretto Creek.

On Saturday one of Tish’s sisters, Sandy, and her husband,Dave, stopped by to spend the night on their way to Florida to visit Tish’s parents. In the morning we went to Easter Mass at St. John the Baptist Cathedral in downtown Savannah, a 130-year-old cathedral presided over by the Bishop of Savannah.  We strolled lazily through the shaded 200-year-old streets of old Savannah before Sandy and Dave continued on their journey.  Driving back to Tybee, Tish and I decided to challenge the 143-foot tall Tybee Island lighthouse.  This was to be my litmus test.  I had put it off until the end of our time there.  I had hoped that three weeks of Monday injections of Procrit would boost my hemoglobin up to level of the task.  But ascending even the condo’s three flights was not getting any easier.  Nonetheless I made it to the top of the old lighthouse by stopping to rest on each of the five landings.  It was windy but scenic at the top.  We traversed the outdoor circular walkway just beneath the nine foot, first-order Fresnel lens at the structures glassed summit.

On Monday we drove the two hundred miles north to Columbia, South Carolina where my brother’s family now included my 105-year-old grandmother.  We had a comfortable two days, watched Indiana University get beaten in the final game of the national basketball championship, and visited with my Grandmother.  She thought that I would be completely recovered from my illness.  Having lived through the Great Depression and having seen her parents lose their home; she was distressed to learn that I was still not working back at the hospital.  My 60% disability checks started in March.

We left Columbia early Wednesday morning with the urgency of needing to pick Aaron up that evening upon his return from Russia.  It was another warm and sunny day as we left the South on our 600-mile drive to the considerably colder north.  I knew what I was returning to.  My mind began to be clouded not only by the prospect of colder, murkier weather, but by the bulk of all the problems and anxieties engendered by my illness.  I discovered that I had managed to leave most of this behind me.  Not everything, but most of it.  During my vacation I was seldom unaware of my illness.  I was chronically tinged by my dis-ease.  But the burden seemed lighter on holiday, as well it should.
As the sky darkened and the temperature dropped, crossing the Ohio River into Indiana it felt to me as if it were time to return, to face the music, to take up anew the burden of the cancer patient.  To stay away longer would seem like cheating.  Arriving home that evening would mean another four days in limbo preparing for a week of tests, preparing for whatever answer these tests might deliver.   Change, change, change … to every season under heaven.

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