The First Chemo

Three weeks after that first diagnosis in the ER, chemo was slated to start: Monday, Oct. 12th, Columbus Day. Tony took me up to the Infusion Center at Sunkin's office, right next to St. Peter's Hospital, for my 11 a.m. appointment. We had just settled in -- me in an oversized recliner, Tony in a visitor's chair -- when the power went out. We waited and waited. To my surprise, they didn't have a generator for this doctor's building, which also houses a radiation treatment center. After about half an hour, a manager came through to tell the staff that the big construction project right next door was evidently the culprit and it would take the power company hours to restore service. So they drew my blood for the needed tests and then sent me home, to return the next day. Pretty anticlimactic.
Mara arrived that evening, having bought a one-way ticket from Austin, TX. She shut off the power at her apartment, left her car in a friend's garage, and came home open-ended -- with her cookbooks, favorite knife and a few other kitchen implements -- ready to cook up a storm.
So when we returned for the chemo the next day, Mara joined us. There I was in the recliner surrounded by family. The chemo itself was quite uneventful, through the port. We read and chatted. I ate a sandwich from a tray they brought around.
We brought fruit-flavored ice pops with us for me to suck on. An oncologist friend whose wife had had chemo for breast cancer suggested keeping one in my mouth the whole time I was getting the chemo as a way of preventing mouth sores -- to keep the mouth so cold it was not hospitable to the chemo. But after the second pop had melted in my mouth in about 30 seconds, we realized this wasn't going to work. The nurse was able to supply a cup of ice chips instead, and showed Mara where to refill it as needed.
The first night, I woke up every hour with my mouth so dry that it was stuck together. It wasn't like any dry mouth from sleeping with it open that I had ever had. It felt like the chemo must just suck up all the body's hydration.
Which no doubt explains why I go back the next day for a couple of hours of IV fluids, as well as the immune-boosting shot.
By Day 3 I felt pretty punk. I have never felt such exhaustion in my life. I wasn't sleepy during the day, just too exhausted to get out of bed, or talk on the phone, or do much of anything but lie in bed.
I wasn't nauseous, thanks to all the anti-nausea drugs they had pumped into me before, during & immediately after the chemo. But everything tasted metallic (my tongue was heavily coated) and all my normally favorite foods were not at all appealing. In order to be able to sip water, we put a drop of lemon juice into it. Otherwise, it tasted too metallic to drink.
I have never been so un-hungry in my life. I'd take two bites of something and feel totally full. I learned to eat -- a little -- even though I was not at all hungry. Same with drinking, and yet theoretically, I was supposed to drink 64 oz. a day of fluids. No way!
Day 3 & 4 were the worst, and then very, very slowly, the side effects started recede. Tony got a lobster dinner for us on Day 5. I was worried I wouldn't be able to eat it, but I was able to enjoy a small serving (and to finish the leftovers over the next several days). In about a week, my appetite and sense of taste returned, but I still felt really tired.
The visit with the P.A. at Sunkin's office on Day 8 to go over the blood test I had the day before and to discuss how it was going went fine. The blood work was good, and the P.A. just urged me to push myself as much as possible. Easy for her to say, but of course, she is right. The scale showed only a loss of two pounds.
After about two weeks, I was able to go for short walks, and I've extended the distance over the next week.
Now, as I am two days away from the second chemo, I have a full appetite, which I have been trying to take advantage of, to try to put a little weight on, knowing what is coming. But even now, I don't have my normal energy level. I still need to rest some, and I still go to bed early.
I guess we'll all get used to the rhythm of the chemo. Mara & Tony were amazing when I was so totally laid up. They waited on me hand and foot, being sure I always had something to drink and offering a wide variety of foods every couple of hours. I cannot imagine how someone who lives alone could cope. I couldn't get my sorry ass out of bed.
Then, once I had recovered sufficiently to make it into the kitchen, what was once my kitchen, I found a very different kitchen. Plastic containers were not put away. Foods were in different places in the pantry. Some of my spices were moved from one location to another. Any person who rules their own kitchen will appreciate how disconcerting this all was. Mara and Tony both run the kitchen very differently than I do. So we laughed some about it. They knew I was better when I got down on the floor and worked in the cabinet putting away all the containers, matching tops, etc. But mostly, I continued to leave kitchen duty to them. After all, Mara in particular was doing such a fabulous job, there was no reason to return and take over. She is in her glory in the kitchen. The more complicated the dish, the more she enjoys making it.
As for the dramatically reduced energy level, one day on the phone Ellie said how frustrated I must be, knowing normally what a busy life I lead, one that requires lots of energy. But I realized that my world has already shrunk dramatically, that one is only frustrated by a lack of energy if you have a lot to do. And I had already taken a lot off the table. I resigned from the Fair board, a move I was already planning in August, having nothing to do with cancer, but I pushed up the resignation. I advised the Bounty board that I would be stepping back. So my days were now free to lie on my bed, answer e-mails from friends, talk with family when I felt up to it, and read. Visitors seemed way too much. I have a great pile of books for the first time in several years, for now I really have reading time.
Hamilton came home for the weekend. I was glad he came when I was feeling my best, so I could enjoy his visit. He is planning to return around Thanksgiving with his bride. The problem is, I have another chemo two days before Thanksgiving, so I'm not likely to enjoy much turkey. Rob & Ellie and their girls will come up the weekend before for a Thanksgiving dinner, and Chris, Gwen & their boys will all come too.
It's been great to see Casey & CJ, my grandsons who live a mile away. They can't come the week after chemo, because of the surpressed immune system, but once we are past that point and the blood work shows a normal white count, they can come. They came over last night to show me their fabulous Halloween costumes before they went out trick or treating. It's a joy.
Jayson flies in tonight from the mountains of Colorado -- for a two-week stay. He hasn't been home that long in over a dozen years, since his college days. He tried to fly home two weekends ago, but got stuck at the Denver airport when not one but two planes he was scheduled to fly out on were grounded with mechanical trouble. Sixteen hours after he'd left home, he finally rented a car and drove the four-plus hours home to Crested Butte, having missed the last flight home by hours and hours. It was the day from hell. So I have my fingers crossed. At the moment, he is in the Denver airport with a several-hours layover. He called to say three other United flights are delayed due to mechanical problems. I'm burning candes.