Adenoid Cystic Carcinoma - One Man's Chemotherapy Journey

© AUTHOR: Steve Kenney
*reprint by permission of the author only*

Date: Fri May 5, 2000 9:22 pm
Subject: CSCGPII DIARY FOR WEDNESDAY MAY 3RD

Second Cycle begins. The diary is back up and running for the 2nd round of chemo. Lisa and I worked 2 shows for 5 of the past 6 days. Spent Friday, Saturday and Sunday working in a mall close to the house. We were surprised we did so well considering April is usually a real crummy month in our business. Then Monday it was off to Shipshewana, Indiana to start our six month, Tuesday and Wednesday, summer tourist market. It was essentially a training run to teach our new employee, taking my schlepie place, to load and unload trailer and set up the display. When I get a chair big enough to hold him he will do some batteries and shortening watch bands. At least the weather was great. Two sunny, mid 70's days. After the 1 week extra layout, all the side effects are pretty much gone. Only problem is the finger tips. Still dry, crack easily and are sore if I have to use pressure to do any kind of job. The warmer weather seems to help them feel less tender and more usable, however. Started the 3 day steroid regimen today for the #3 Big Drip tomorrow. Last Monday the tension leading up to the next cycle started kicking in. Did go thru some wacky, short tempered episodes these past few days. That without the steroid boost that will probably come. Generally eating, sleeping, regular chores and working were pretty much back to normal. Still shaving only every 5 days. Still have sufficient hair. I was not a chemo sissy for nothing and that slow slide from this new cycle is not going to rank up with a pleasant sunny round of golf with some buddies!!!

Date: Sat May 6, 2000 2:02 am
Subject: CSCGPII DIARY FOR THURSDAY MAY 5TH

Here we go again, #3 Big Drip! The steroids kicked in. Got to bed around midnight but was up at 3am. Watched lousy TV for an hour and a half and slept a couple of hours after that. What wakes me up is something like acid reflux and then when awake the little jitters get to me. Goof the morning away getting some food and liquid in me, for the steroid dose and the 28ML of Docetaxel that's coming. Be at the Cancer Center by 11:30am. I arrive about 11:25 and check in and get my first of many blood-work slips. While sitting in the phlebotomists cubby hole the day turns bizarre. The blood room is right across the hall from the check-in area and I hear a lady checking in say the my last name. Since my last name is not that common I jokingly told eer blood drawer to mark my blood good since I didn't want mine mistaken for hers. She said not to worry! Ha! So off to the waiting room to await my call to see My doctor for the quick check before the 1 hour chemo drip. After waiting for 45 minutes and not seeing any of my usual care givers, it's back to reception to find out what’s the delay. Then 30 more minutes waiting while I watch the receptionist, nurses and others huddle in little groups and go off into offices and reappear to go off someplace else. By now, with the steroid boost, my blood pressure blasting off and my face heating up, someone better come up with an explanation quick. Finally an hour and forty minutes late, the head nurse for this day (one I hadn't seen in my previous 8 weeks of almost daily visits to the center) comes out to haul me back to the exam room. She tries to put me on the scale but I tell her that all that can wait till I know what is going on! She launches into the lame excuse mode. Their was another person with my last name and I go whoa. That person was female and her name was "Eliza" so you thought a female named "Eliza" and a male named "Stephen" was the same person? Well, yes that is kinda what happened. In other words I'm here to get $10,283.95 of toxic chemical dripped into my body and you can't keep track of me? Is "Eliza" getting her chemicals or mine because I really doubt we’re are getting the same chemo. And what about the Smith and Jones if you get 2,3 or maybe 4 in here at one time? "I can see you're upset and don't want to listen so maybe you should go and reschedule to take this later." "I have already laid out a week and I want to get rid of this cancer and all I want from you is bottom line on how we fix this up and make it happen." And so she finally comes up with the magic words. "We screwed up big time and their is no excuse for the way or why this happened and what can we do to get this treatment started?" Probably going to run out of room so go to part II.

Date: Sat May 6, 2000 2:30 am
Subject: CSCGPII DIARY FOR THURSDAY MAY 5 PART II

The previous conversation in Part I was abbreviated a little as she lame excused and I cut her off a few more times but you get the gist. I told her if she had said that an hour ago in the waiting room, instead of making me wait even longer by trying to pin blame and lame excuse me after that, this whole thing would have been almost over and I would have been minutes away form going home. And she could have saved herself a lot of wrangling and rancor from me. So we were finally ready to get started. But first I had to throw out the first nurse they sent in to do the procedure since she was the one 4 weeks ago who didn't know how to vent air out of the Drip bottle. I was on a roll and I didn't care whose nose got bent and I was right because Maureen was better and nicer! Went and weighed myself and gained a couple of pounds (now at normal weight for me), the rash has cleaned up and Dr. says I'm fit to go. The Docetaxel is brought in the special bag and with the special tubing and away we go. Hooked up and #3 Big Drip begins. 1 hour later, my blood pressure is down 40 points to rock bottom and the Docetaxel is now in me. Set up next weeks appointments (hope Eliza stays home) and get my ER prescriptions for blood booster shots over the weekend and I'm finally off to home. Arrive home at 3pm. 2 extra hours in all. The rest of the day finally went great. Went and saw the Granddaughter, Kaitlyn, in her 5th grade musical, do a wonderful job and had a nice birthday dinner for the youngest daughter after that. Ate and drank a little too much and a touch of gas towards the end but a much better end to the day than the start. Beddy bye around midnight.

Date: Sat May 6, 2000 8:13 pm
Subject: CSCGPII DIARY FOR MAY 5TH

A quiet day for a change. Was probably so tired from Cancer Center run around and over sated from late dinner, that I made it thru the night with only 1 quick liquid release. Got an early start to Friday since I take my steroids at 8am and 8pm and have to eat something first. Then I'm off to the grocery to stock up since my lovely cook, Lisa, will be gone from Monday am til Thursday am. And I don't shop on the weekends with the masses. Spent the rest of the day catching up on a week’s e-mail, venting steam (still) while writing diary about Thursday's fiasco, running out for Big Game tickets and for 10 tickets I got 3 numbers right. (wow) Was able to get most of dinner down with no problem and kept reading and watching TV until strolling off to bed about 11:30pm. Nothing popped up on the side front, probably because of the extra week I took in the cycle, and no naps were needed. A nice sane day for a change.

Date: Sun May 7, 2000 6:41 pm
Subject: CSCGPII DIARY FOR SATURDAY MAY 6TH

The last of the steroids got me. Awoke at 2am and channel surfed until falling asleep again, around 4:40am. Back up at 7:20am for good. After the usual crossword, jumble, shower routine its time to try eating. I stocked up on "Ensure" this time, to see if the extra protein would help. Had one with an English muffin, honey and peanut butter. I hate eating this early in the day unless I am working. Then off to the ER for the first of the blood booster shots. I can't shake "Eliza". Her meds are there, in the refrigerator, but mine are not. So I have 20 minute wait until pharmacy gets on the ball. Its going to be fun on Monday morning when I attempt to get these snags ironed out. I have all this extra time on my hands and just need the strength to stay up with it. Got home and since it is now in the 80's around here, wandered around the yard, killing overgrown grass and weeds and checking on my tree plantings on the freeway overpass hillside by my house. (I am stuck with a 1/2 acre of county land that they can't get their tractor's on, so I am turning it into a forest so I don't have to keep mowing it.) It sure feels much better and easier to take this chemo in the warm weather than that cold, windy, rainy stretch during the last cycle. Lisa was out shopping most of the day and I finally got my 7 day backlog of e-mail sorted and answered. The afternoon flew by and I was able to keep rolling along. Dinner was my downfall. After salad, steak, mashed potatoes and corn I hit the lounger and got thru "Emeril Live" ( I had to watch the lobster cooking - my favorite food) and then slept there until 11:30pm. Then got up and went straight to bed. So, except for the crashing after dinner, nothing seemed too out of sorts, yet.

Date: Mon May 8, 2000 5:09 pm
Subject: CSCGPII DIARY FOR SUNDAY MAY 7TH

Slept straight thru until 6am. Finger tips are really feeling the effects of the chemo. They seem to get drier and feel wrinkled (although they don't look it) and putting pressure on the pads causes discomfort. However, using them, like typing right now, makes it stop being so sore. Maybe the use of them pushes the medicine out of the tips and spreads it elsewhere, while inactivity lets it pool there. But hey, I'm no expert. Mouth film is back also. Coffee now tasting a little funky this am. I try another can of Ensure and it still tastes OK, so I guess it's liquid diet time to keep up the protein. The shot at the ER goes smoothly this morning and yes they had the meds there waiting. Back home, I spend the rest of the morning, repotting flowers to set around the house. As I've noted, the warm weather does wonders for making one feel better about being able to do something useful. I also run a couple of store errands, to get things to send with Lisa, when she goes off working next week. A lazy, hazy afternoon spent doing nothing much. Hang out in lounger, watching some basketball and hockey. Lisa and I go visit one daughter, for an apartment decoration update, and stay for Chinese dinner. They forget to bring the rice with the meal, upsetting the other 2, but my taste is shot so it doesn't bother me. Good food, bad food, I just keep swallowing until I can't anymore. Spend the balance of the evening and night wrapped up in a quilt, pretty much sleeping the rest of the day away.

EPILOGUE

As I’m sure you noticed, I did not complete my diary through the entire second round of the ‘Big Drip’. There were a couple of reasons for that. One is that as you go deeper into a round of chemo, the effects start to build up and you start to slow down. Second was that I continued to work and that required a lot of driving/travel and heavy lifting. With that extra burden and the chemo fatigue building up I just did not have the energy or time to do it all.

I will summarize the rest of that trail and give a rundown in general terms. I got through the first part of the trial and halfway through the second part, when the checking CT scan showed the large tumor growing again. So that was it, I was out of the trial.

Now, a rundown of the side effects. I never did lose my fingernails. However, my toe nails were another matter. I never lost the entire nail but they became pretty much dead and chipped off constantly. During this chemo I did learn how toxic these potions are. Every time they gave me a ‘Big Drip’ it would leave a dead line across my nails. The fatigue buildup was noticeable and got tougher as we moved alone. I had to curtail some activities but was able t , at least, keep working. There were also a few days when I just got laid low and didn’t do much, but not that many and next day it was gone. The rash, steroid redness, hair fallout, no beard growth all continued, but were minor irritants.

The one major complication was numbness in my fingers and feet. Again it slowly built up and hit its peak in the middle of round two. My fingertips became very numb and a determent because of my work as a watch/jewelry repairer. It was a chore and took extra concentration and at least twice the time to finish something. To this day, the bottoms of my feet still have a residue of numbness from the chemo. It subsided from its worst but I would estimate I lost half the feeling in the soles of my feet. Enough to know that some feeling is gone.

So that is it. I must caution that everyone reacts differently to medications. Also I was in very good shape and I have an iron stomach.. I had other chemotherapy’s after this one and effects were about the same except for Gleevac which did a number on me. But that’s another story for another time.