09 – Starting Treatment

The holidays ended soon enough, too soon it seemed to me.  The morning of my first outpatient treatment was dark and cold.  Tish warmed up the car.  We had packed a small canvas bag with essential items: my vial of IV Demerol (the clinic had a policy of not keeping narcotics), reading material, my CamPath information packet, and a folder with lab and CT scan reports.  I had printed up a copy of the T-PLL teaching sheet that I had written, aware that the clinic staff would not know much about this rare condition.
It was the day after Christmas and traffic was light.  The clinic is housed by the interstate highway, in a satellite medical center for Methodist Hospital.  It is about eight miles from home but easy to get to.  It is surrounded by a shopping mall, a movie theater, motels and restaurants.  Restaurants? Maybe after my treatment I naively assume.  Two medical office buildings flank a lab, radiology department and outpatient surgery center, all connected by walkways.
We are to report to the lab around 8:00 for a complete blood count (CBC) to be drawn.  We report to the receptionist then sit in the waiting room for our name to be called.  At registration, in a routine that will become irritating by the following week, I show my insurance card as the registrar asks me about my wife’s name, my employer, my correct address, etc.  She then asks what I am there for.  “Labs”, I reply.  “Where are your orders?” I state that all I have is an appointment card instructing me to arrive at the lab at 8:00 and the oncology clinic at 9:00.  She seems frustrated and says that the lab will have to call the doctor’s office.
We wait in the padded chairs outside the lab.  My name is called and I go in alone.  I sit at a small school-desk with armboards.  The technician draws blood from the antecubital, my “AC”, the place inside the crook of my arm.  I am too tired to make conversation.  I leave the lab and together Tish and I walk down the hall to the oncology clinic.
It is only about 8:30 so we sit down to wait.  We seem to be the only people there.  We later learn that the nurses do not begin until 9:00.  The intercom is somehow permanently set on the most obnoxious local radio station available.  Mindless banter and cackling interspersed with the worst music from the 60’s and 70’s. The magazine selection is sparse but includes a vintage 1992 Atlantic Monthly.  Finally we are called back to the treatment area.  It is a long room with a large window at one end.  Five E-Z Boy recliners line one wall, each chair flanked by an IV pole, small rolling stool, and a stainless steel wheeled tray with gauze, tape, bandages, and other small supplies.  At one end of the room, opposite the chairs, is a chest-high counter lined with medical reference books.  Behind this is a workspace for the nurses complete with a laminar flow hood (an exhausted air hood for mixing occupationally dangerous chemotherapy drugs), a small medicine refrigerator, and shelves of  IV supplies and medications.
The nurses seem to be expecting me, know that I am a cancer nurse with an unusual disease and an unusual treatment.  I learn that, as at the hospital, no one has ever given CamPath before.  I hand them my teaching sheet on both the drug and disease.  This becomes a permanent part of my chart. I begin with what will be the beginning of my daily routine – weighing myself.  The result, which will repeat itself for weeks to come, is that I weigh less than I did on my last visit the week before Christmas.  Then I am given two Tylenol.  Tish goes back out to the lobby to fetch a paper cup of water from the bottled water dispenser.  We will learn to bring the water in with us in the future.
The window chair seems to be the most scenic but another patient has already occupied it.  I notice that in the corner, opposite the last of the five chairs and sitting diagonally right in front of the nurses’ area, is a sixth recliner.  I sit here.  It will become my regular chair, Dennis’ chair.  I like it because it is separate, is close enough to the nurses that I can hear them talk to each other or on the phone, and it faces the other chairs so that I can keep my eye on things.  I later discover that at the clinic I will seek out small things that allow me to regard myself as a nurse and not a patient.  Arguably an illusion on my part but it helps me to cope.
My nurse for the day is friendly and cheerful.  I get the impression that she might be a head nurse.  We get a copy of my labs.  My white cell count is still high – 17,300 mostly defective lymphocytes.  My hemoglobin is normal.  My platelets are back up to 95,000, closer to normal.  We have a blue folder to keep track of my labs.
I am considered pretty good at starting IV’s. On weekends at my hospital when there are no IV team nurses, I am regularly called upon to try to start difficult IV’s, those belonging to cancer and renal patients whose chronic illnesses have long ago deteriorated their accessible veins.  Starting IV’s is the sort of thing that, if you do it well, you feel really good about yourself.  It is an admired skill among nurses.  You don’t have to have been a nurse very long before you realize that one of the first things you notice when meeting new people, even if they are attractive and of the opposite sex, are the veins on the back of their hands and on their forearms.  A nurse with exceptional veins will sometimes offer her arms to new nurses in order to practice IV’s.
On the other hand if you have difficulty sticking the vein, if it takes a long time and a bit of probing, and especially if you don’t succeed even after trying with two separate needles, then you feel very, very bad.  You feel bad for the patient who had to endure the procedure. You feel embarrassed in front of the family members (this may be why some nurses ask family members to step out of the room while they work).  And your own self-esteem is knocked down a notch.
I generally allow anyone in the room who is brave enough to stay for the procedure.  I believe in distraction as remedy for anxiety and pain associated with someone preparing to stick a needle in your hand or arm.  I talk to the patient and family during the whole procedure, stopping only as I push the needle hesitantly in those first few millimeters.  Especially if this is not my patient, I ask why they are in the hospital, the name of their disease, how long since diagnosis, which doctor, what do you do for a living, or maybe talk about the movie or sports event on the TV – anything to keep their mind off what I am doing.  I also want to convey that while I may be only in the room to do this one task, I am interested in them and why they are here.  This also means that I know a little bit more about what is occurring with the rest of the patient population on our unit.  And when I see the families in the kitchen or at the nurses’ station, or see the patient in the hall on a stretcher or wheelchair, I can ask how things are going.
Sometimes I tell people that they can close their eyes when I stick the needle in because that’s what I will be doing, closing my eyes.  Other times I ask if it is okay for our new student nurse to start their IV.  She is blind, I explain, and needs to work on her confidence as well as her skill.  Sometimes I can tell by the look on their faces that they are not sure if I am joking.
So I am good with IV’s.  I am comfortable with IV’s.  It is one of the skills by which others and I define myself as a good nurse.  But the reason that I have provided this background is so that readers of this journal will appreciate it when I reveal what I was not intimately familiar with regarding IV’s.  I was not prepared for the discomfort, no, the pain of having an IV put in my vein. I don’t scream or faint.  I have always thought I had a high tolerance for pain.  But I do find myself tensing up.  I do look away.  And I do ask my nurses to cry, “Got it!” when they have a blood return and the catheter is threaded.
An IV catheter is really just that, a short, narrow plastic catheter. That’s all that stays in your arm or hand.  But to get it into your vein, the nurse starts out with a very sharp needle that travels snugly down the center of the catheter.  Once the vein is successfully pierced, the nurse will try to advance the catheter into the length of the vein, hoping not to bump into a valve (in which case it will not thread any further) or worse yet not to pierce through the opposite side of the vein (in which case it’s “blown” and the blood will leak out the second hole).  If the “start” is a success, the nurse will withdraw the metal needle back out of the catheter and attach IV tubing to the hub attached to the catheter.  The other problem is that sometimes you cannot find or “hit” the vein with the needle.
Almost every time the clinic nurses have succeeded on the first try.  I ask for a 22-gauge needle, relatively small and my needle of choice when I am working.  But it is still a tender process.  And the knowledge that sometimes the nurse may not succeed increases the anxiety level.  I am getting blood drawn three times a week at the lab (a cinch by comparison) and a new IV stick at least three times a week at the clinic also.  A minimum of six stabs with sharp objects every week.  For cancer patients it is the little things that grate us sometimes, the little pricks, pains and insults that form a panorama of frank physical, emotional and psychological suffering.  Little efforts at comfort, like using adhesive remover to dislodge the tenuous silk tape, are readily appreciated.
On that first day my nurse succeeds with one attempt.  But even after I know that the needle has been withdrawn, I am aware of the plastic catheter pushing its full 5/8” length down my vein.  She hangs my Zofran (anti-nausea) and Benadryl (anti-chills) in a bag above my head.  It drips in slowly.  And slowly that familiar wave of weightless floating envelops me.  Next comes the Demerol.  We bring our own, from a prescription from the oncologist, so that the clinic will not have to stock narcotics and thus become a target for thieves who like the stuff.  By the time the Demerol infuses I am pretty well sedated. There is a point just before this moment when I will learn to take off my glasses, elevate the footrest, and push the recliner back.  I announce to my nurse and caregiver “If you have anything important to say then say it now or forever hold your peace.”
I am aware that, as in the hospital, although I cannot talk very well or even hold my eyes open for long, I can hear every word.  This is not sleep but stupor.  My recollection of the rest of that day is hazy at best.  I do sense Tish’s presence in the chair next to me.  I hear the nurses talk on the phone with my oncologist about how I am doing with the infusion.  I hear my nurse tell Tish that she has to go to the other nearby clinic to work.
Then I feel the equally familiar but dreaded electrical rush through my torso and then out to my limbs.  “It’s starting,” I moan.  Tish gets up to tell the remaining nurse that I am starting to react.  This nurse is not familiar with CamPath and asks Tish to run out to the lobby and call back my original nurse.  Tish catches her, but is redirected back to the original nurse.  Tish explains impatiently that it was the other nurse that sent her out to the lobby.
I am shaking away by the time they return.  Tish gets me a second blanket from the cabinet.  My original nurse injects additional Benadryl and Demerol into a small bag above my head.  The CamPath infusion is interrupted for the time being.  I notice what I had noticed in the hospital – that the familiar wave of stupor flows over me first, the slight, burning sting of the Benadryl traveling up my arm, only later does the chilling and rigors subside.  On this first day it seems that the medicines are dripping in more slowly than necessary.  In the hospital we would shoot them in slowly with a syringe rather than waiting for the bag to drip the medications in.
I remember next being awakened by Tish and the nurse.  My infusion is complete, as is my liter of saline for hydration.  I feel very lethargic and want to go back to sleep.  The IV is taken out of my hand.  Tish takes my blankets off and I try to sit upright in my recliner.  I start to shake again, not as intensely, but a steady disconcerting shaking just the same.  The nurse calls the oncologist and relays the message that this could continue for hours.  She suggests that Tish give me Benadryl tablets when we get home. Tish is frightened.  She is thinking that if I was hospitalized because of the possibility of rigors, then why am I so readily being sent home now.
Tish helps me on with my coat.  Both she and the remaining nurse help me into a wheelchair.  I am shaking in the wheelchair and having difficulty holding my eyes open or my head up.  The nurse suggests that Tish go bring the car around to the entrance.  After longer than seemed logical, Tish finally returned to the office.  She had thought that the nurse was going to wheel me out to the curb.  But the nurse said that she could not leave the clinic, as she was the only nurse.  So Tish pushes me out to the car, covers me with a blanket, then returns the wheelchair to the clinic.
I remember being huddled in the car, leaning against the door, and shaking all the way home.  Periodically I open my eyes.  But we are never where I anticipate we will be.  The trip seems to take hours.  Tish helps me into the house and out of my coat.  I have had almost 1.5 liters of fluids and I need to urinate.  Tish has to help me into the bathroom.  It takes a long time, even in a sitting position because it is difficult to start to urinate when you are shaking.  Tish has to help me sit up.  She notices for the first time the dark rash on my calves is now dark purple and covers my legs entirely.
Finally I am ready to return to my chair in the living room.  To climb the stairs is too much.  My mother, sister, and sons Nathan and Aaron are home.  I am still shaking, making staccato moaning sounds.  They cover me with four blankets.  Tish goes to find the Benadryl that we just happen to have in the cabinet.  They take my temperature, give me more Tylenol, and wait for the shaking to stop which it finally does.  Periodically someone gives me water or stokes my forehead.  Around five hours later I awaken in my chair.  With Tish’s help I get up stiffly and walk upstairs.  I try to watch TV but cannot focus enough.  My body aches all over.  I feel like a zombie and Tish has to undress me for bed.
I am tired and listless the whole of the next day yet have trouble falling asleep that night.  On Friday we return to the clinic.  I have a new nurse today.  She is recently arrived from Rome, Georgia and has a florid Southern drawl.  Her old nametag states that she is an oncology certified nurse. She is the only one in the office that wears a nametag.  As an employee I had always been ambivalent about nametags.  But now I want to know and call people by their first names.  This nurse’s name is Donna Bush.  By next week we will be privately calling her “Donna the Peach.”  She is immediately warm and seems interested in both Tish and myself.  She talks a lot but always with the purpose of making her patients feel comfortable.  She is the only nurse that I see hugging patients.  In a way she reminds me of me.  She will become a favorite for Tish also.  But this day is similar to the last.  The chills, rigors and fever return.  They are tended to quickly.

When it is time to leave the clinic, Donna pushes me out to the lobby in the wheelchair.  When Tish pulls up to the curb, the two help me into the car.
The next two weeks are much the same.  I have a routine established. Once Tish has to return to work at the end of her holiday, volunteer caregivers from work begin to take me.  Our day always starts at the lab.  After three days of answering the same questions in registration, I had resolved to state “Nothing in my circumstances has changed since the day before yesterday.” But that day the receptionist tells me that the office has preregistered me.  I go straight to the lab waiting area.  I gradually get to know the staff there.  Patty greets me at the laboratory window as I hand her my paperwork.  Doris is the name of the lady at the reception desk whom I gradually chide into remembering my name so I do not need to announce it each time.  After a day or two I tell my phlebotomist that I am a nurse and also draw blood in the course of my job.  She is an older lady named Dorothy.  She is very good and I tell her that she is “an artist with a needle.”  We rotate arms with each visit (nurses talk – a funny phrase if you think about it – rotate arms? doesn’t that hurt!), right then left.  Sometimes I bring them candy or take their photographs.  They all know me by my first name.
I gradually come to know the rest of the staff.  Theresa, Apra, and Monica work the front desk, keeping the records, making appointments, and answering the phones.  Most of the nurses are in fact certified in oncology as a plaque in the treatment room attests.  Patty is very outgoing and keeps the staff in stitches I heard one say.  She does the schedule and is an expert on clinical policy.  Brenda is soft-spoken and a bit shy but compassionate.  Brenda and Donna will be the ones who most often care for me. Susan seems to be the most knowledgeable, sort of the mother hen.  On every visit I uphold my role as educator and quiz the staff on this or that, including more obscure medical terminology.  Susan nearly always knows the answer.  She is a careful, conservative nurse, always aware of her self-imposed boundaries of practice.  Next to Brenda she is the most reserved of the group.  Another Brenda is interviewed and hired during one of my treatments.  She becomes known as “Brenda II” and is the most talkative of the group.
Jan is the practice manager.  The first time that I meet her is my fourth day of treatment.  Before we begin she sits on the rolling stool next to my recliner.  Jan asks me if I am comfortable with being treated with CamPath in the office rather than in the hospital.  I reply that I am comfortable, that Donna is a good nurse and takes good care of me.  On the third day I had a severe reaction which was difficult to bring under control.  Then the symptoms abated only to reappear again.  They noticed that my fingernails became cyanotic or purple.  My temperature climbed to 104.1.  So Donna did not want to release me until it was less than 102.  I think that maybe the CamPath administration was nearly as difficult for the nursing staff as it was for me.  I hoped that my infusion reactions did not disturb the other patients too extremely.
I am conscious that at the beginning of each morning I stand at the nurses counter, talking with them until the last possible moment, going over my labs, asking questions, quizzing.  My weight will continue to decline each treatment day by a half-pound or so.  But this small change allows me to report to Tish that “my weight is about the same as the last time.”  Some nursing colleague or other is taking me most days now.  This further contributes to my illusion of Dennis as nurse rather than patient.  I get used to the fact that one of the nurses goes to “Little Eagle”, the clinic in the other building, between 10:30 and noon.  We are at “Big Eagle”.  In a few months the two clinics will combine into one on the second floor of the building we are in now.
One treatment day is much the same as the one before it.  Sometimes I have a different nurse.  Sometimes I start with one nurse and end the day with another.  For three weeks the chills and rigors arrive to be followed by escalating fever.  The reactions vary in intensity although they are generally less severe.  And reactions are occurring further and further out from the start of the CamPath, sometimes during the hydration, after the CamPath.
One day I try to wait out the shakes, thinking that I can control them, as they are not too severe.  Donna is at lunch in the back room anyway.  I stop Tish from fetching her.  “Wait a bit, maybe they’ll stop on their own.” The next day while I am lying there sedated with eyes closed, I hear Donna telling my caregiver to come get her from lunch if I react.  “He’ll tell you not to, but come get me anyway.” Donna the Peach.  I notice that sometimes Donna will whisper to my caregiver if she doesn’t want me to hear.  They have learned that I still hear them even when I seem asleep to the world.
I had taught Tish how to figure my AGC – that portion of my white cells that are neutraphils, infection fighters.  It involves multiplying two decimals.  I taught her because one of the two numbers, part of the CBC called the differential, does not get faxed to the clinic until after I have been sedated.  One day I hear the nurse tell Tish the second decimal.  I cannot open my eyes but before Tish can do the equation on paper, I figure it out in my head and slur out the answer.  Don’t make the mistake of assuming I am asleep.
Sometimes everything is finished and the nurse is ready to remove my IV.  “How soon since the CamPath was finished?” I ask.  If it is less than seventy minutes, I ask that they run more fluids first.  I am afraid of having a reaction after my IV has been taken out.  The interval between CamPath and infusion reaction is getting longer.  And for all of that three weeks I am right about the reaction eventually occurring.
I feel wasted on my days off.  For a while Sunday is the only time that I have any energy.  The problem is like a domino effect.  Once I react and start to chill and rigor, most of my major muscles groups contract vigorously, using up calories, and causing my muscles to ache subsequently.  Following the rigors is the fever.  Fevers alone can cause a person to feel tired and drained.  And once I react the nurses have to give me additional sedatives to stop the rigors.  One day I had to be given Demerol four times and the Benadryl three times – 100 mg and 150 mg respectively.  I reflect later that I myself have never given anyone this level of sedation.  I take a short poll the next day and no other nurse that I asked had given as much either, especially that much Benadryl.
On that 150 milligram day I had to get an extra liter of fluids, almost 2500 cc in all.   For the past week my caregiver would drive two blocks to the Arby’s to buy me a strawberry shake in order to replace some of the calories that I was burning during reactions.  I was too sedated on those days for lunch or even much dinner.  But halfway through the infusion and after I drank the shake, I needed to urinate.   Donna escorted me into the large patient bathroom.  The door closed and I noticed that Donna was standing behind me with her hand on my back.  I was having difficulty starting the stream, as they say.  Donna says, “Sometimes Demerol makes it hard for a guy to pee.” So I replied “Sometimes a woman standing behind a guy in the bathroom makes it hard to pee.” She left me alone.
Many nights before a treatment day I was vaguely anxious and found it difficult to sleep.  Other times it seemed as if treatment days were the ones to look forward to.  They were the ones on which we were doing something to fight my disease.  But I did not like the sedation, malaise, and lethargy.  I began to feel that treatment days were days that were being subtracted from my life.  And I reasoned that by any measure my days were not abundant.  By now the rash on my arms and legs has disappeared.
On Wednesday of the third week I announced to the clinic nurses that we were going to try something different.  Since I always have a reaction, I have nothing to lose.  We would not give Demerol as a premedication since there was little evidence to suggest that it played a role in preventing rigors.  Demerol was not listed in the CamPath protocol anyway.  We will still keep it in reserve for when I start to react.  We would also track the interval from start of infusion to start of reaction in order to see any change from with and without a Demerol premed.  This is what I would call evidence-based nursing – a hot topic now.  My nurses would call it practicing medicine without a doctor’s order.
After my speech the nurses just stared back at me, so I said “What do you think?!” They replied that that would have to call the doctor.  My doctor was on holiday so they paged the doctor on call.  This doctor hesitated to change the protocol. When a patients declines to take a medicine, we are taught to chart and to report that the patient “refused”.  This wording strikes me as a bit paternalistic.  So I always chart the patient “declined“, which, as I see it, they have a right to do anyway.  But lest I be labeled as a non-compliant patient (the worse category of all), I sat down in my recliner though I think that I probably pouted for a while.
On the third Friday Susan, an LPN from my hospital, was my caregiver.  She had worked the twelve-hour night shift, driving to my house directly from the hospital.  She was, I later learned, a bit anxious about her responsibilities as caregiver.  I had composed a two-page instruction sheet on the “Care and Feeding of Dennis on Treatment Days”.  Since caregivers needed to record labs, help me sip water, watch for early signs of a reaction, make sure that I get safely out of the clinic and into the car, and assist me into my house where they might need to cover me, take my temperature, and give me Tylenol and Benadryl, I felt that we should provide some direction.  It involved more than just giving me a ride to my doctor’s office and the whole process sometimes took six to seven hours.
I rode with Susan to the clinic. We went through our morning routine.  The Benadryl by now was causing a temporary condition called akathisia, or “restless legs”.  My legs would suddenly jerk upwards. Other times my legs would just not feel comfortable and I constantly changed positions.  Sometimes I needed to stand in front of my recliner, eyes still closed, and walk in place for a minute.  Eventually I grow tired enough to sleep.  I was aware that Susan was sitting next to me, stroking the back of my hand.  I have such good friends.  The infusion and hydration were nearly complete and still no reaction.  I began to become anxious about this, hoping that the chills and shakes would begin, hoping to get it over with, afraid that the reaction would not occur until after we had left the clinic.

Ironically I was content when the reaction started shortly, though it was milder than previous reactions.  I was given my prn Demerol and Benadryl.  Then they piled me into the wheelchair.  Once in the car I began to shake again though not wildly.  Susan got me home and into my house.  My mother was waiting.  I was given additional Tylenol and Benadryl after being covered with blankets.  She asked if there was anything else that she could do for me.  I thanked her for staying with me through such a long day after such a long night.  I lie there under my blankets with my eyes closed.  As she left, she kissed me lightly on the forehead.  I have such good friends.
A new chapter was beginning though I did not know it at the time.  That Friday was the last day that I had an infusion reaction in the clinic.  The difference in how I felt would be dramatic.  As I look back on this illness, I am aware that, on many levels, I am going through stages, different chapters each with their own set of challenges and surprises.  Having cancer is not a static condition.


Comment from Lui Gabriel
Time September 13, 2010 at 4:40 pm

Hello! I just finished my first cycle of Campath. I should have read your book before the treatment to prepare me for the shakes! They were very scary. I am tolerating the meds very much better now. I would like to get a copy of your Teaching sheet on the disease and campath if that is possible. The 4 month to 54 month prognosis you mention also scares me. Is stem cell transplantation inevitable?
How are you doing now?
Thank you.

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