These are a few notes I recorded yesterday:
From a [Monday 1:35 pm] email to sister #4:
I'm sitting in the infusion room now about to start chemo... And now 2/3 of the way through it. The platelets came up just enough today to get it started. It was a busy day here today that's only now starting to settle down. Fortunately, I thought to head down to the cafeteria to get a sandwich while waiting for labs and the chemo go-ahead.
[Monday 1:45 pm] I'm been in the infusion room since 9:30 this morning, but the third of the three drugs that drip into my new chest-spigot is on its way into my system.
My platelet count was up just enough to risk the chemo.
It's been a busy day in here today with two people dropping in complaining of severe nausea after chemo sessions.
[Tuesday 3:20 am] good thing i heard those nausea explanations. i just threw up.
The infusion room was packed when I arrived at 9:30. The guy who usually checks us in from a desk on the east side of the room was off for the day. The three already-busy nurses on duty had to fill in for check-ins and to run blood samples down to the lab on the ground floor.
The infusion room is on the sixth floor of the original hospital building. It's wedged into what was intended to be a four-bed hospital ward and is one of the rooms that demonstrate how necessary it was to build the new buildings that are rising just across the street to the east of this ward.
Five large easy chairs are arranged along two walls on the west and north side of the ward. Three desks with computer monitors for the nurses, scheduler, and on-staff pharmacist are jammed along the south and part of the east wall of the old ward. A standing-height island with medical supplies is positioned in the center of the room with a wide supply cabinet just to the left of the door on the east wall.
One of the patient easy chairs is positioned so that a walkway for the nurses is blocked if the foot risers of the chair are extended into the full lounge position.
There is very little room for visitors, so if anyone brings along family members, the whole place becomes even more cozy for everyone.
It was so packed that my regular nurse had to install what I call the spigot into my port while I was sitting in the check-in chair so that she could draw a blood sample. To do that, she applies just enough lidocaine to deaden the area. I don't feel a thing when she inserts a large needle into the access port. Even though the skin that's stretched tight over that port is still somewhat sensitive, it seems to have be a worthwhile alternative to the regular search and poke to find a "good vein" that would otherwise still be necessary.
So when I say "packed", I mean it. After getting the spigot installed and getting the blood drawn, one of the chairs opened up. I grabbed it. And waited. And waited. It was becoming clear from some comments of nurses to each other that the lab was equally busy this morning.
One of those waiting uncomfortably was a young Hispanic man. He seemed eager to give up the easy chair he sat in, but the nurse told him each time, "No. Stay. We're working on getting a translator." He speaks no English and the hospital's translator service was being as inefficient as ever.
When a translator finally arrived, I listened even more closely than I usually would because I realized I didn't know how to use the nausea pills they'd given me after my first chemo session. Like the young guy in the chair next to me, I hadn't had trouble with nausea after my first two sessions. But my neighbor described through the translator significant problems after his third sessions. "I hate to call my boss and tell him that I can't get to work, but sometimes it's so bad, I just can't get there."
The nurse and translator explained that he should now take one of the pills (the one shaped like an American football) twice a day even if he wasn't feeling sick. He could take the small white pill up to eight times a day if he felt like he was even getting close to being sick.
With a good translator present, the guy poured out a number of other questions like, "Why am I always so tired." (Nurse: "I'm afraid there's nothing we can do about that. You'll just have to rest as much as you can when you're not working.") "Why do I have to wait so many days before getting another treatment?" ("This is complicated," the nurse said to the translator who conveyed something like that to the patient. The nurse explained the notion of "protocols" and "what works" and then the translator did what seemed to be a good job of conveying as much as possible of that to the patient.)
As the patient was leaving, the nurse said to him through the translator, "I admire you for trying to work every day through this. Come back here if you have any more problems. We'll get a translator next time even if we have to do it over the phone."
I've seen the guy a couple of other times in the infusion room, always before this without a translator. He always seemed confused and just a little frightened. As he left yesterday and for the first time that I've seen him here, he smiled as he left.
(And, it occurred to me that this ambitious young guy who is so worried about missing a shift at his restaurant job because of chemo treatments would be one of the first folks that Lou Dobbs and the politicians he speaks for would like to see run out of the country.)
While waiting for the labs and listening to the nausea-med instructions, I realized, incongruously, that I was getting very hungry. I'd forgotten to bring cash with me this morning so I checked my wallet to see if one of the cards might have enough cash available to get a sandwich and to get the co-pay fee for the drugs they'd give me after the chemo. I found one and headed down to the cafeteria with a stop at a bank machine. (Oh, my... In front of me was an ATM customer who tried out several cards in the machine until she finally, slowly, found one that worked. Sigh.)
With two sandwiches in hand, I headed back to the infusion room where I found my favorite chair open. I set up the laptop just in case even though I was feeling tired. By then the nurses had gotten permission from Dr. O to go ahead with the chemo even though my platelet count had made only a slight jump. There had also been a delay getting the chemo drugs -- I imagine that was partly due to the two delayed sessions from last week.
As I began to eat a sandwich and crunch on chips, the chair next to me was taken by another guy who complained of the same sort of nausea that its prior occupant had suffered. He had tried to take the pills as directed but was worried that he hadn't been able to keep them down. The nurses, after consulting with his oncologist, decided to give him a fluid drip with some anti-nausea meds added in. He had also gotten through his first couple of sessions without nausea.
"This isn't a good sign," I thought as I waited for my delayed third chemo session. I tried to munch my sandwich as quietly as possible as the fellow next to me explained his symptoms.
The nurse attached a fluid drip to my chest spigot as we waited for the actual meds which were finally delivered at about 1 pm.
The protocol used for my chemo treatments is called CHOP
, which was, at one time, an acronym for the four different medications delivered during the tri-weekly chemo sessions. The four drugs are now more commonly called Cyclophosphamide
, and Prednisone
Many lymphoma patients are now treated with a modified regimen called rCHOP or CHOPr [for those who prefer an Easy Rider style]. This regimen adds another medication called Rituxan
to the mix. But Rituxan works only with the most common form of lymphoma -- diffuse large B-Cell lymphoma. It doesn't work at all with the form of lymphoma I have, so it was wisely left out of my regimen.
Only three of the drugs are administered during the infusion session. I take Prednisone in a nasty-tasting oral pill for five days in the morning after the chemo session. Two of the drugs are added to the drip tube by a nurse who slowly squeezes the liquids out of a large syringe type device. One of those is Vincristine, which is a red liquid that turns the pee a deep orange for a few hours after it's administered. Before the central line was attached, the nurse had to closely monitor the vein where the IV was attached to make sure the drug didn't leak into surrounding tissue. This is no longer an issue with the central line dangling into a major vein.
Another of the drugs is administered with the help of a drip-pump along with fluids into the vein.
I've found nothing painful or bothersome about any of the three chemo sessions I've experienced. I was tired yesterday during the chemo session and even fell asleep a few times in the easy chair. As I've been after each chemo session and transfusion, I was very tired when I returned home and slept for several hours before retiring for the night.
But until last night at about 3 am, I hadn't experienced the kind of nausea that can be so debilitating for some chemo patients. Even last night, I vomited a few times, took the indicated pill, and then slept through the rest of the night. No problem so far today, but I'll take another of those football-shaped pills in about an hour and another one tonight -- just in case.
Yesterday's chemo session should be about the half-way point in my treatment. When my sisters and I met with Dr. O last Tuesday, she said she's hopeful because of my quick and apparently permanent response to the first chemo session. She explained that after the fifth session, they'll run through the same set of tests that they ran after my initial diagnosis. That would mean a CT-scan and -- probably -- another of those bone-marrow biopsies. They'll be looking for remaining signs of the cancer and will stop at six treatments if they find nothing.
So all of this is mostly hopeful. But behind it all lurks the notes I've heard and read about the problems with predicting the course of the kind of T-Cell lymphoma that I have. Fewer than one percent of non-Hodgkins lymphoma cases involve things other than the B-Cells of the immune system. With so few cases, there is far less clinical history to predict things like long- or short-term complications of the disease and its treatment.
But, so far, it generally feels good. I'm starting to worry now about getting off this chair and getting a job in a month or two. It's time.