07 – Days in Hospital

It is now time to write about that necessary rite of passage – the first stay in a hospital.  I thought it would be a breeze.  Hospitals are a second home for me.  I have spent a good part of the past twenty years in hospitals.  And I had seen my own patients do very well with Rituxan, another monoclonal antibody used for lymphomas.  But the hospitalization and my treatment were harder for me than I would have imagined. I understand more than ever the desire of some of my own patients to go home and to be a person again.  I am almost a month behind in my story.  The holidays, malaise, and a certain amount of anxiety conspire to keep me away from the computer.  So I sit down now to write before some of the memories fade or become suppressed by fears.
So on Tuesday, just one week before Christmas, I entered the hospital.  Please recall the small circus of confusion when I tried to get registered at the hospital for my biopsy. This time we were asked by my doctor to report to the hospital at 7:30 AM.  Tish drops me off at the door while she parks in the distant garage.  I approach the same information desk to find the same receptionist who consults the same pile of clipboard lists with, of course, the same result – no “Dennis Pyritz”.  She begins making her phone calls.  I am still standing at the desk when Tish comes in from parking the car.  Tish has even less patience than I do in such matters.  Predictably we are eventually steered by to registration.  They tell me my room number and assure me that I am on the oncology unit (I am leaving nothing to chance).
We arrive on the seventh floor and follow the signs indicating my room number.  The nurses at the desk are friendly but admit cheerfully that they had no idea that they were getting an admission.  My nurse, Debbie, seems to be charge nurse for the shift.  My room is a nice size for a hospital, private as befits a person with a cancer diagnosis, and has a great view of the interstate highway that runs through the city, curving around to reveal the university medical center beyond.
Dr. Markham shows up shortly early.  We briefly discuss my weekend and he examines me.  Then he says that he misspoke regarding the CamPath protocol.  It requires treatment three days a week, not once.  I had already begun to wonder about this after reading the CamPath protocol on the Berlex website and talking with Monica, our pharm D at Community.  This small fact will greatly impact the tenor of my life for the next three months, impact it more in fact than I, a virgin cancer patient, can presently imagine.
With prescience Ray tells Tish “Your husband is much sicker than he looks right now.  And after the treatment he will look much sicker than he actually is.”
I quickly settle in, electing to wear oncology nursing t-shirts and hospital pajama bottoms instead of the more traditional, open-in-the-back gown.  My vitals are taken. I try to learn the staff’s names.  I let Debbie know that I am an oncology nurse.  I ask her what she knows about my disease and if she has ever given CamPath.  I am not surprised that she knows little about either. I am prepared for this.  I have brought along my own purple dry-erase marker.  And sure enough there is a large white marking board in my room.  I erase and move my vitals signs to an upper corner.  I then fill the board with an outline about CLL, T-cell versus B-cell disease, the role of monoclonal antibodies, the major side effects of CamPath, with a few more trivial but interesting facts thrown in, such as the fact that CamPath is manufactured in Germany with recombinant DNA technology utilizing the ovaries of Chinese hamsters.
These efforts to educate my caregivers serve their intended purpose but also, as Debbie admits, tend to intimidate them.  I vow to try to be more low key, though not, as you will read, always successfully.  Blood is drawn and the wait begins.   Doctor’s orders need to be processed, the pharmacy notified, the unit pharm D needs to check my height and weight (although dosing with CamPath does not vary with body surface as is true of traditional chemotherapy).  We all know that my doctor wants the CamPath started as soon as possible.  Somehow physicians forget what nurses know – that ironically hospitals can be among the slower, more ponderous of institutions.
So we wait once more.  After I had presented my clinical persona to everyone, dark fears return in the quiet of the room.  I am just staring out the window at the highway.  Tish asks me what I am thinking.  I reply that my mind is just wandering.  She moves to the bed, sensing that my musing is dark.  She tells me that I need to be able to talk to her.  When she asks what I fear most, tears come immediately to my eyes and I reply “Dying too soon.”  Tish tells me that she knew that is what I was feeling.  She said that she was afraid too.  I suddenly feel relieved.  I have been trying to protect her, hiding from her information about my prognosis.  During our diagnosis session with Markham I had tried to speak obliquely about prognosis. But the graveness of this illness had not escaped Tish.  We talked for a while about struggling with this awareness.  Some light had come to my personal darkness.
Finally around lunch we are ready.  Debbie had put a saline well in the back of my hand with just one “stick” or attempt.  First I get Tylenol, then an IV drug called Zofran which will prevent nausea.  Zofran belongs to a class of drugs called 5 HT3 antagonists that were so effective that after their introduction in the mid-nineties, hospital admissions for chemotherapy fell precipitously.  Next I received 25 mg of IV Demerol, the narcotic painkiller which is also supposed to help suppress rigors (shakes) and chills.  Then I got 50 mg of IV Benadryl.  25 mg Benadryl tablets are now sold over-the-counter for histamine reactions to such events as bee stings, jelly fish stings, poison ivy and sunburn.  The 25mg dose is also the common additive in “nighttime” cold, flu, and headache preparations as it induces sleep.
Some of our patients seem to enjoy the subjective, “drugged” effects of both medications.  Of course I was not in pain.  But I am here to testify that I personally do not like the effect.  I was talking to Tish and Debbie.  The room started to swirl, my eyelids felt heavy, and my words started to slur and thicken.  We were playing Rachmaninoff’s Vespers on the portable CD so my room felt like an abbey at evening prayer, especially given my drugged state.
My CamPath was started.  This is my first of three incremental doses – only 3 mg.  Debbie sat dutifully in my room, working on her charting and recording my vitals signs every fifteen, then every thirty minutes.  My normally low blood pressure fell only a little, nothing to worry about.  She told me that my oncologist had called to check on my reaction to the CamPath.  After an hour she needed to check on the rest of her patients.  At some point as I lay there in blissful weightlessness, I began to feel a strange internal vibration, an almost electrical sensation course through my chest and abdomen, subtle at first then increasing in strength.  I was not sure what it was, but I said to Tish “You’d better call Debbie.”
Debbie was at lunch but another nurse came in.  By this time my limbs has started to tremble, then to shake, progressing in intensity until it seems like my whole body was coming off the bed.  I remember trying to remind the nurse that CamPath was in the line and that she would need to flush the line before giving me additional Demerol and Benadryl.  She was already drawing up the saline flushes, one for before and one for afterwards.  Of course to me this process seemed to take forever.  Tish was over my bed, talking to me.  She was holding me and I imagined that she was holding me down lest I vibrate off the bed.  Indeed she had to help hold my right arm and hand down so that the nurse could push the two drugs.  Slowly, not quickly enough for me, a wave of warm stupor fell over me. By this time Debbie had returned from lunch and was in my room.  (It’s a standard joke among nurses that when you say “I’m leaving for lunch, my patients should be fine.” it ain’t necessarily so.)  Tish reminds me that after those rigors finally subsided, I opened my eyes and said to she and Debbie “I need a kiss from one of you.” Tish volunteered.  Later she lies beside me in the bed as I sleep off the draining effects of all the drugs and side effects.  The late afternoon sun is golden and is streaming through the picture window and across us on the bed.  Tish later says that this is her best memory of the hospitalization.  My body and mind felt incapacitated.  So this was CamPath.
I felt pretty drugged the rest of the day.  I was not able to eat much dinner.  Tish and I watched TV in the dark.  She was struggling with wanting to spend the night. This had been a difficult day for me but not a crisis.  So I told her that I would be all right and that she needed her rest.  It is advice that I give families all the time.    Go home and be assured that I will take care of the person you love.
As she left, I heard voices in the hall.  Jan and Lisa, my original and my second managers on the oncology unit, were here to visit.  Tish felt better about leaving.  These are friends and colleagues that I have known for fifteen years but do not see often as they have gone in other career directions.  But these are the types of relationships that allow you to pick right up where you left off, even if you have not seen each other for months.  They brought Christmas CD’s as gifts.  It was a warm visit.
I slept fitfully, constantly aware of wanting to guard my IV site, not being comfortable in the electric bed, not thinking to ask someone to shut my door.  I was relieved but tired when morning came.
Debbie was my nurse again.  Tish helped me take a shower.  Then we walked in the halls.  There is a solarium on the floor with a good view of the cityscape.  I put fresh linens on my bed because that seemed more normal to me than having someone else do it.  I volunteer, half seriously, to help make beds or collect breakfast trays from other patients.
Ray came and said that my infusion reaction was, of course, expected and should abate and disappear in a few more treatments. Then he announced what seemed to be a daily dollop of bad news.  He had run a CMV titer that was positive.  CMV stands for cytomegalovirus.  Much of the population will test positive for it.  But I, with my impaired T-cell immune system, am dangerously vulnerable to CMV infections.  Much like persons with AIDS, I am liable for CMV-related blindness, hepatitis and pneumonitis.  Indeed the doctor shares with us that most persons with my disease die from CMV.  He had run another quantitative CMV test, a Di-gene test that requires an infectious disease physician to properly interpret.  He will arrange for a consult later today.
Today my CamPath dose was to increase to 10 mg.  The drug arrived.  I was given my pre-medications then I floated away.  I had already asked Debbie to have the flushes drawn up and ready so that in the event of another reaction I would not have to wait.  I could hear Tish and Debbie talking together.  Debbie is engaged to be married and has sensed stability and a sense of sharing in Tish and my relationship.  Music plays in the background.  The next thing I know Debbie is disconnecting the IV and telling me that the infusion is over.  My fever was up and I feel weak and woozy but no rigors or chills.  I thought then that I had it made.  But it would be weeks before I again escaped treatment without the chills and rigors.
Late in the afternoon Dr. Judy Streit, my new infectious disease doctor, introduced herself.  I had talked with nurses about who would be good and her name was mentioned.  She was in the same practice with the infectious disease doctors that I have collaborated with over the past decade, Steve Norris and Bob Baker.  We exchange cards.  Judy takes my medical history and performs a physical exam.  She then explains that the CMV “Digene” test showed me to be in the low positive range.  She would like to test me again in the morning and then every two weeks.
If the number were elevated tomorrow, she would like to start me on an anti-viral medicine called Ganciclovir, probably starting Christmas Eve.  This drug must be given IV twice a day so that I would need a home care nurse.  It is somewhat caustic to peripheral veins so I would need to get a PICC line, a temporary IV line inserted into my arm and threaded to a large vein near my heart, the superior vena cava or SVC.  This line could stay in for 6 – 12 months.  Good news – I could have labs drawn from it and could received future CamPath doses through it.  Bad news – it increases my chance for infection.
Ganciclovir is a powerful drug with potentially dangerous side effects.  It is cytotoxic, like most traditional chemotherapies and thus poses health risks to the persons mixing and administering it.  In the person receiving the drug it can cause renal failure, profound and sometimes irreversible neutrapenia (neutraphils are the other indispensable part of my immune system, the main part that actually works to protect me now), cardiac arrest, stroke, pancreatitis, GI hemorrhage, and a string of other conditions, including ironically, leukemia and lymphoma.  The test is run on Fridays. Judy instructs me to call the office Friday afternoon and to tell her staff that they need to page her with the test results.  This is what I needed – something new to worry about, something to brand me as more and more dependent on the medical system.
That evening Tish and I took our walk around the unit.  The solarium was too cold to stay in for long.  The visitor lounge, however, contains a full kitchen, a living room with grand piano and several couches.  I was tired so we sat down alone in the dark on one of the couches.  We talked about our kids and how to approach talking with them about my disease.  I feel totally unprepared to deal with this.  The mere thought brings tears.  I tell of my need to feel that we are prepared financially.  How much life insurance do I have? What about a formal last will and testament?  And there are so many things that need to be done with the house.  We resolve to look into these things.  I feel some sense of relief at having discussed these issues.
Tish insists on spending the night.  My sister, Barbarann is staying at our house these three days to help care for my 104 year-old grandmother. The nurses say that they have a cot but that it is not very comfortable. The mattress is one of the most decrepit I have ever seen.  Tish tries it out and says that it feels like she is lying on box springs without padding.
My night nurse, Kelly, comes in.  I recognize her and give her a hug (hugs come unnaturally easier to me these days).  She worked for a long time at my hospital.  I encountered another such nurse, Michelle, on day shift.  I was manager for both of them.  This is beginning to feel more like home.
Marie comes to visit, bearing gifts – a large stuffed teddy bear and a chocolate malt that tastes exquisite.  I invite her to stay to watch “West Wing” on TV with us.  After she leaves Tish tried to make herself comfortable in the recliner.  She eventually ends up in bed with me.  I sleep for a while but awaken early in the morning and move to the recliner myself.  As it becomes light and the day shift arrives, Tish wants to trade places so that it does not look as if she has kicked me out of bed.  She gets in the recliner and discovers rather unpleasantly that I had had night sweats and had saturated the sheet that covered the recliner.
On this third and final day I had a new nurse who was training a newly hired LPN.  They both seemed nice.  I go through my daily shower and bed-making routine, then take my morning walk around the unit with Tish.  I feel weaker and walk more slowly than when I arrived on Tuesday.  We are visited in the morning by a dietitian, as I continue to lose weight due to poor appetite, and by the social worker. In a real perversion of what we have both experienced the true mission of social work to be (Tish has been a social worker for twenty-five years), this social worker introduces herself and then hands to Tish an twelve page application for a $500 assistance grant from the Leukemia and Lymphoma Society.  She proudly explains that they like to contact the families of newly diagnosed leukemics as soon as possible in order to present them with this application.  She gives Tish her card then leaves the room.  This is a social work intervention requiring a person with a Masters degree?!  No assessment of financial needs, emotional and psychological support systems, living and home situation, need for durable medical equipment or home care.  Upon reading the application weeks later, we learn that we should be dissuaded from applying for the funds unless we are really in dire need as funding sources is limited.
The doctor does not arrive until late in the morning, which pushes back my treatment since he was writing the CamPath orders day by day.  I was given my premeds and the room spun slowly.  The nurse told me that she had connected me to the fifteen foot tubing which contained 40 cc of saline priming fluid.  She said that my treatment needed to be done in two hours so that she had added that 40 cc to the 100 cc of CamPath.  This made 140 cc divided by the two hours, resulting in a rate calculation of 70 mg per hour.
I nodded but this did not seem quite right, even to my addled brain.  The LPN kept track of my vital signs.  But the more I thought about this calculation method the more I became convinced that it was faulty.  I resolved to speak to the nurse when she next came in.  By then it was nearly an hour into the infusion.  I apologized for questioning and allowed that I was drugged.  But I said that it seemed to me that the 40 cc would take over thirty minutes to infuse.  After that my CamPath would only have less than 90 minutes to infuse, not the two hours recommended by the protocol.  And the rate of 70 cc per hour was 40 % faster than I had been getting, 40 % faster than calculated by the pharmacy.
She smiled and said that this is the way she had learned to administer chemo at the university hospital.  But if it made me more comfortable she would turn the rate back to 50 cc per hour.  The nurses did not monitor me as closely as the first day, especially after the eventless second dose.  But they did tell Tish to call if I started to react.  She could even pull the call light jack out of the wall.  This triggered a more urgent alarm in the hall.  Sometime before the infusion ends the familiar discomfort begins to creep about my chest, followed quickly by generalized tremors, then full-blown rigors.  Tish had pulled the cord out of the wall, then gone to the doorway to ask for help.  The response seemed prompt.  The two of them worked on me, drawing up the flushes, pushing the drugs.  They noticed that my nailbeds were blue or cyanotic so put me on 2 liters per minute of oxygen through a tube under my nose.  The shakes did not seem quite as violent as the first day but took longer to bring under control.  Body and mind were limp once more.  It was dark outside when I awoke.
I feel almost paralyzed but I am determined to get up.  Today was the day I was to be discharged.  But today I had started my treatment later than usual, had a reaction, been given the extra drugs.  I asked Tish to help me to sit on the side of the bed.  Nathan, my eldest son had arrived from Boston late the night before.  I was determined not to spend another night in the hospital.  And I was a little angry at the way I was feeling.  When the nurse came in, I told her that I wanted to take a walk in the hall.  But I wanted a wheelchair to push so that I could sit down and be wheeled back to the room in the event that I was too weak to return on my own.
After waiting forty-five minutes for the wheelchair which never showed up, I told Tish that we were walking on our own.  With her help I made the complete walk around the unit.  We began packing.  I decided that while I was angry about the CamPath administration, I wanted to make it something positive, an opportunity for learning.  I told the LPN that I wanted to speak with my RN.  My nurse never came.  But another woman was in my room offering to help me pack.  I had dressed and was putting on my shoes with some effort.  She asked me if I was sure that I was strong enough to leave.  When I learned that she was one of the unit managers, I asked to speak with her and my nurse.  I waited for the LPN to take out my IV and leave the room.  I decided to speak now with this manager about the calculation of the CamPath rate.  I emphasized my desire for this to be a learning experience, an opportunity to improve practice that we should constantly be seeking to do.  In my still lethargic state I tried to outline the incident and my concerns.  The manager stated that this nurse had seven years experience but that she would have her call the pharmacy.  She later returned to say that the pharmacy believed that the administration was within the acceptable limits.
I was not convinced.  I had read the manufacturers protocol recommendations.  The sole reason for admission to the hospital was this particular drug’s high potential for serious side effects.  To deviate from the recommended settings was to invite problems.  And hospital dispensing pharmacists (as opposed to the clinical pharmacists available on day shift) live in a world of their own, never venturing out onto the nursing units, and having little if any experience on how drugs are administered or how IV tubing, primary and secondary lines are assembled.
Tish returned from the parking garage and said that all the nurses were talking about my “complaint” as she passed the nurse’s station.  Oh great, I have been labeled a difficult patient!  My wheelchair finally arrived.  Tish was instructed to fetch the car.  I was pushed out in front of the nurses’ station to wait.  The nurses were exchanging Christmas presents.  I sat in my wheelchair, feeling a sense of unresolved issues, feeling that my nurse had been avoiding me.  I could see my nurse in the station.  When the nurse who would have taken care of me on the night shift introduced herself, I asked her to fetch my day nurse.  When she came over, I thanked her for taking care of me and for responding so quickly to my rigors.  She said she hoped that she had done nothing to cause them and repeated that this was the way she has always administered chemotherapy.  Other chemotherapy drugs have greater degrees of latitude.  She gave me a hug and I wished her a good holiday.
The aide pushed me to the front lobby, then out into the cold, blowing darkness when Tish drove up.  Nathan, Aaron and Barbarann were at home.  I sat in my chair for a while and tried to converse.  Then Tish helped me upstairs and undressed me for bed.  My body hurt all over.  And I have never, ever in my life felt quite so tired.  But I was home and that made all the difference.

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