10 – Life Brightens & Lightens

On weekends I feel better.  I have two whole days to recover.  Sometimes someone will take me to a movie.  Sometimes Tish and I will go out with friends.  I have enough energy for about one outing a day.  One Saturday we decide to go to Ben’s apartment complex.  He is my middle son.   He has given his old car to Aaron, his younger brother, for Christmas.  The only problem was that it would not start.  So Tish, Aaron and myself squeeze into my truck.  It feels good to be driving again.  We have to physically push the car, a 1988 Plymouth Reliant, out of its parking space.  I connect my heavy-duty jumper cables to the dead battery and have Aaron spray ether into the carburetor as I turn over the engine.  Eventually it catches and sputters reluctantly into a steady idle.  Aaron drives his new car for the first time with Tish in the front seat.  He only has a Learner’s Permit.  I follow them home.  There I direct Aaron in checking the various fluids and cleaning the battery terminals off.  I go into the house and am aware of a strange but familiar feeling.  I grope for a bit then realize that it is the sensation of being normal, of doing normal things.  I had forgotten my illness if only for a few hours.
Our dishwasher decides that now is a good time to quit.  We discover that it cannot be repaired.  So on a Sunday I insist on accompanying Tish on a search for a new one.  This is another of the roles traditionally assigned to me. I consult the Sunday advertisements and the article in Consumer Reports.  We search the “Scratch ‘n’ Dent” section of the appliance store without success.  Eventually we settle on a machine that is on sale, has a rebate, and qualifies for “one year same as cash” financing.  The excursion promises to make me feel normal also, that is, until I suddenly become dizzy and short of breath in the midst of a conversation with the sales person and have to sit down.  So much for a return to normalcy.  My cancer will not let me forget.
On Monday morning my caregiver-for-the-day picks me up for my treatment.  I tell her that she needs to help me to “let go” of my infusion reactions.  I suspect that I somehow have accepted the reactions as part of my treatment experience.  Though they are very uncomfortable I am reluctant at some level of my consciousness to part with my reactions.  I am gratified that Susan has already discussed my request for no Demerol premedication with my oncologist and that he concurs with me.  We even decide to reduce to Benadryl dose from 50 to 25 mg.  I fall asleep anyway, awakened finally with the news that the CamPath is completed.  I ask that we not disconnect the IV until it has been one hour past the completion.  They waken me again and I ask for ten additional minutes.  I am fearful of having the reaction after my IV had been discontinued.  Ten minutes are up – nothing happens.
We leave.  just after noon.  For the very first time I leave my treatment on my own two feet, not in a wheelchair.  I point this out to all of the office staff as I leave.  I had noticed a sale at McDonald’s – two quarter-pound cheeseburgers for $2.22.  We drive-through to the pick-up window.  The drive home is uneventful except for the fact that I am awake.  At home I pour us each some ginger ale and we sit down at the dining room table to eat.  I start to feel a little chill as I eat.  Then a slight tremor creeps through my hands.  She watches me questioningly.  As I am finishing the last bites of cheeseburger with determination, my hands start to shake violently.  She is already getting out Tylenol and Benadryl tablets.  I take them with some difficulty.  She helps me over to my chair and covers me with four blankets.  The chills and rigors subside after about ten minutes. I drift off to sleep.  When I awaken hours later, my temporary caregiver is gone and Tish and Aaron are home.  I will still consider this day a success.
The next few treatment days establish a new pattern.  We continue to avoid the Demerol and use only a half dose of Benadryl.  I walk out of the clinic unaided.  We begin to incorporate lunch out as part of the new modus operandi. We try new restaurants, not just fast food places but real restaurants as well.  My friend and second manager, Lisa Jones, takes me to Rick’s Café Boatyard that overlooks Eagle Creek Reservoir.  It is a cold, snowy, gray day.  A slight chill followed by tremoring in my hands reminds me that I am not entirely well.
Different caregivers accompany me to treatment.  Tish does duty when I have an appointment to see the doctor or when her schools are not in session.  My first manager in oncology, Jan Young, drives me to the clinic in a car with heated seats.   One day  I fill my pockets with candy and pass it out to the people in the lab, to the front office staff and to the nurses.  I also offer it to the patients in the waiting room and in the chairs.  More and more I start to talk with patients and families.
One day a man receiving chemotherapy tells me that he was last here three weeks before.  He said that he felt so sorry for me, that he almost cried for me.  Donna tells me later that other patients were sometimes “freaked out” by my demonstration of chills and rigors.  Considering that literally all the other patients come and go without obvious infusion reactions, my own must have been singularly dramatic. The sudden vigorous shaking of my entire body, my caregiver and nurse springing into action to minister to me.  The nurses had to assure the other patients that I was all right.
One of the other patients, as well as her caregiver, is a nurse.  And we discover that her neighbor, Hope, is a nurse that we work with. Jane is treated on Wednesdays and hereafter sits on our end of the room.  In a few weeks Hope will act as her caregiver.
At some point my weight reaches a low of 166 pounds, a twenty-pound loss since I started treatments.  Then slowly I start to gain weight, ½ pound to one pound at a time. My platelet count slowly rises to near normal – a signal that my spleen, where platelets are sequestered, is clearing of defective lymphocytes.  My hemoglobin falls below ten grams so I begin to get injections of the growth factor, Procrit, on Mondays in order to stimulate the production of red blood cells in my bone marrow and to avoid the need for blood transfusions.
My white count hovers between 2,200 and 2,800 cells.  As this occurs my nurses feel the need to wait for the differential portion of my CBC.  These are the values that allow them to calculate the number of those white cells that are actually active in fighting bacteria.  Normally this is very important.  Most chemotherapy drugs preferentially suppress those cells, called neutraphils.  In acute leukemias we actually intend to suppress them to nearly zero.  The only problem is that in the case of my treatment we technically are not using chemotherapy drugs but rather a monoclonal antibody.  And the target of CamPath is my lymphocytes, not my neutraphils.  These are the two main types of white cells.  So that if most of my lymphocytes are suppressed, then the remainder must be neutraphils.  And when my white count is over 2,000, I still have ten times the minimum number of neutraphils which would signal the doctor to interrupt my treatments.
I am concerned about the nurses’ focus on my neutraphil count because it means that we have to wait in the reception room, sometimes as much as two hours, before they even bring me back to the chairs for treatment.  This makes for too long a day at the clinic.  I resolve just to discuss the issue with Ray.  I have a Wednesday appointment.
Tish accompanies me that day.  The last time we met with the doctor I had been heavily medicated and was chilling and stuporous during his exam.  I had to be wheeled in then out of the exam room.  After this day’s treatment is completed, we walk to an exam room.  Ray palpates my spleen.  Then he declares that it has shrunk from 14 cm below my lower left rib to only 4 cm below.  Likewise my lymph nodes have shrunk though some remain palpable.  He looks over my labs and announces that I am responding to the CamPath dramatically.  I ask a few questions about remission and transplant.  Ray stresses that he is not the transplant expert.  But he explains that our understanding of how stem cell transplant works has been changing.  It still seems the best option.  But I will not have a consultation until my remission is proven – a “clean” abdominal CT scan and bone marrow biopsy.
We discuss briefly the upcoming opera production as we are both fans of opera.  I ask Ray about the necessity of delaying my treatment in order to wait for the white cell differential.  He decides that not only is the differential unnecessary but that the daily blood draws are as well.  We agree to have blood drawn on Mondays only.  This is my day to receive Procrit and it is necessary (mostly for reimbursement issues) to know my red cell differential before administering Procrit.  We leave the office that day with a sense of progress and a sense of lightness.  We have been given some scientific evidence for optimism.
We continue to document this experience on film (these are pre-digital days).  My new camera is kept in our canvas clinic bag.  We take pictures of the nurses working, of me and each of the nurses, the front office staff, and even of some of the patients that we know better.  We get double prints and give the extras away to staff and patients.
One day we decide to stop the Benadryl completely as it is a small dose and is unlikely to be the reason I do not react. More likely is the idea that my body has, at long last, acclimated to CamPath.  I do note that the nausea drug, Zofran, still causes me to feel a bit sleepy and “wobbly-headed” as Donna describes it.  But I do not feel the overwhelming need to sleep any longer and can stay awake if I desire.  But Zofran is the next drug on my list to consider discarding.  It is very expensive and may not be necessary.  We do think that the CamPath itself causes some immediate feelings of fatigue and unwellness.  But the CamPath I will keep.  I am halfway through the thirty-six treatments.  Lately the nurses have had a bit of difficulty starting my IV s, sometimes requiring two or even three attempts, this despite my intentional efforts to drink at least a quart of water on the evenings prior to treatment days.
My life outside of treatment is improving. Several times I have gone to meet with friends from the hospital.  One day I decided to go up to the fourth floor and surprise people.  My white count was high enough and I would stay off of the wards containing patient rooms.  I had a very nice visit with everyone.  They seemed to flock to me in groups for hugs and salutations.  Some people cry.  Others tell me how much better I look now than I did the Monday before Christmas when I met with the staff.  As always we recorded all of these now precious events on film.
Last week a group of people from the hospital came to visit me around dinner.  They brought with them three large pizzas, soda pop, and an enormous basket plus another box filled with goodies. It took me an hour to open everything.  This included ten videos, two twenty dollar gift certificates for movie rentals, a Yanni CD, six cans of Pringles, three boxes of cookies, numerous candy, crackers, snacks, cookie mix, assorted nuts, health mix, a tea pot and matching cup, three large mugs, two filled with chocolate, more chocolate, aromatherapy candles, books, stuffed bears including one which was handmade, a one-person flannel body wrap, seven boxes of tea and tea collections, crayons, and toys such a Silly Putty, Silly String, a deck of trick cards, a balloon maker, soap bubbles, and other articles to numerous to itemize.  My friends do continue to amaze me.
This is a middle period.  It is difficult to understand.   I feel much better physically and emotionally, but perhaps not dramatically so.  Treatment days are much easier to tolerate, and yet I feel spacey and unproductive the rest of the day.  I rarely feel frankly sick but neither do I feel well.  I chill easily, tire easily, and become short of breath.  My hands seem to be cold often.

I still dread bedtime much of the time.  There is nothing to distract me, I am too tired to do anything, I am more aware that I still have leukemia.  Even though I do not obsess on my condition, even though I do not think that I am clinically depressed, I still feel restless and uncertain.  I frequently find it hard to sleep.  I sit in the recliner in the bedroom for hours.  Many times I do not want to take a sleeping pill.  I feel that I take too many medicines. Even when I fall asleep more easily, even when I dream those sweet dreams, the moment I awake my thoughts return to some aspect of my illness.  Indeed my life has lightened and brightened over the past few weeks.  But I carry that dark heaviness with me still.  It is always somewhere there in the background or on the periphery.
I need to learn to deal with this sense of uncertainty.  Will I achieve remission?
What then?  Is stem cell transplant as answer?  How much will that process affect the quality of my life?  Will I make it to the UICC Congress in Oslo this summer? I  am responsible for the Nursing Programme.  Will I return to work? I may well learn to deal with this better after my transplant consultation.  But, oh, I know that the uncertainly will continue on in some measure.  I will never know with any certainty when or if this disease of mine might rear its terrifying head.  But right now I am able to see beyond seven months at least.  Right now I am looking out towards fifty-four months.  In the studies that I have read that is the longest that a person, a person involved in studies, has survived this disease, even with CamPath.  And right now, from where I stand, fifty-four months seems a long time.  How quickly we humans adapt to circumstance!  To wish for more seems almost greedy.  One some days that fifty-four months seems time enough. Time enough to dream some more, to make a few dreams come true.  Time enough to labor some more, to make a difference in this world.  Time enough to infuse my life with substance and richness.

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