My Cancer Journey 5

Written in 2010, about chemotherapy. Hopefully this will help someone facing a decision about chemo.

The decision to do chemotherapy was not made lightly. Having watched other people go through it, I knew it would not be without negative repercussions. Chemotherapy works, basically, by putting chemicals in your body that are supposed to attack the cancer cells. Unfortunately, it sometimes gets confused and attacks other cells as well, especially those in skin, hair, and nerve endings, hence the frequent side effects of hair loss and nerve damage. I knew that it could weaken other areas in my body, possibly making them more susceptible to other problems. So I started reading about ways to build up my system. Again, advice poured in, usually unsolicited. I was shocked at the number of people who felt compelled to share their friends' or relatives' chemo horror stories, and frustrated with the ones who called to ask me how and why I made the decision. The oncology education nurses at St. John's were very kind and helpful. I had two appointments to discuss how chemotherapy would be administered and what to expect. I was then scheduled for surgery to implant a port which would be accessed for the treatments in order to avoid stress on the veins in my arms.

That port turned out to be the worst part of the whole cancer experience, making colon surgery seem like a walk in the park. All my doctors, and some other former cancer patients, reassured me that it wouldn't be a big deal, so I checked into the one-day surgery unit not expecting it to be one. I was wrong. I woke up in horrible pain, with a huge lump in the right side of my upper chest about two inches below my collar bone. I had lost 25 pounds, remember? That thing stuck out like a hard-boiled egg. It had required two incisions, and they hurt. Phil was there, waiting to take me home, and then the fun really began: As we were driving home, his blood sugar, suddenly and inexplicably, plummeted. In my medicated, post-surgery state, I had to help him maneuver the car off the road and then take over driving. I managed to get us to a Subway where we had an early lunch, but by that time, the pain was almost unbearable. Back at home, I took more medicine and tried to sleep. That night, I woke up several times crying from the pain. I simply could not stand the pressure of that thing. It hurt every time I moved my arm or took a deep breath. Phil called the ER and got a prescription for stronger medicine. In a few days, the pain subsided enough for me to function, but I absolutely hated that thing. It stuck out; it was in the way; it hurt every time something touched it, including lingerie straps and the weight of my coat (it was January); and the stitches refused to heal properly. Both doctors reassured me that I would get used to it. I had to go back in to the oncology nurses a week later to have it cleaned and accessed, and was then scheduled for my first infusion, thinking that six months was going to be a long time indeed. I was even more discouraged when I was informed that after spending the morning at the hospital for the infusion, I would have to go home with a bag taped to me to continue a slow drip of chemicals, spend the night that way, and have a home health nurse show up in a couple of days to take the whole mess out. At the first infusion appointment, I was taken into the triage area. I'll say this for St. John's: They tried to make it as cheerful and comfortable as possible. Quality recliners, flowers, quiet areas to read. I was all hooked up and ready to go, when my doctor came in and told me that there was an emergency shortage of one of the medications in my infusion. She was researching the problem, which seemed to be with the lab that produced the medicine, and was refiguring a different protocol for me. Apparently the limited supply of the medication was being channeled to Stage IV and Stage V patients, who needed chemo to kill inoperable tumors or shrink large ones enough to do surgery. My doctor said I could just go home for that day until she researched the best protocol for me. The next day, Dr. Raju called to say that she felt that an oral chemotherapy would be the best solution for me. It would not work as quickly, but the effect would be cumulative and over the six months would be statistically just as good. It did, however, cost $1600 for a three-week supply, of which I would need several. And my CHM membership was at a level that didn't cover medicine outside the hospital stay. Wow, I thought. That must be some powerful stuff. Fortunately, I qualified for a grant to cover the cost. I started the medicine. Over the next few weeks, several things happened. One, I began to feel some side effects. I had decided early on to get my hair cut short, so that 1) it would be less likely to fall out, without as much help from gravity, and 2) it would be easy to take care of. I liked the short hair and was pleased that it did not fall out, but my scalp did feel funny. I also suffered nerve damage in my hands and feet. They were red and inflamed. Few shoes were comfortable--thick white cotton socks with sandals were about it. Wow, I thought, I'm stylin' now. And my part time job required picking up products in grocery stores to scan them and enter information into a computer. I couldn't work very fast because I couldn't feel the products and was afraid of dropping them. (Since I worked on a time/#of scans basis, I decided that my dwindling paycheck wasn't worth it and finally quit.) I also think some brain cells got fried. My brain took longer to load information, and then would suddenly lose it without warning. One particularly distressing incident occurred at church, on a day when Brian was not there to lead worship and I was leading from the piano (which, fortunately, I could still play without pain.) I had a list, and a plan, but then the pastor came up onto the platform with a last-minute change, and I lost it totally--couldn't remember a thing about what I needed to do. So embarrassing. Another time, I was ordering a sandwich at a restaurant when I just went blank, with no idea what I wanted or how to order it. And my fumbling fingers had trouble picking up change, pencils, etc. In some ways, it would have been easier if I had lost my hair or had other obvious problems. Instead, since I looked fairly normal, it wasn't obvious that I was a chemo patient and I think people just thought I wasn't very bright.... The wonderful thing about oral chemo, though, was that after about two rounds of it, my doctor felt I was doing just fine on it and decided to remove my infusion port. Hallelujah! I was so excited I could hardly wait for the removal surgery. So, I had two $4,000 surgeries to insert and remove a $1,500 piece of plastic that I didn't use........oh, well. I did learn something from all that: I learned to be sympathetic with people who depend on one of those things, for kidney dialysis or something, to stay alive. (Actually, in talking with other people, I did find that while most people don't have much trouble with those ports, a few other people, usually skinny ones, hated them as just as much as I did.) Since I knew I would be tearing down some of my body cells, I had been researching ways to build up my system. Again, it seemed like everyone had a suggestion. I researched product after product. Many of them I couldn't afford, but some I feel were very beneficial and in fact I still use them. One was mangosteen. I was introduced to it by Donnie Clark, a drywall subcontractor for our business. I really could feel the difference: I had more energy and I slept better, which is HUGE for a chemo patient. I sometimes still use mangosteen, either as juice or in a capsule. Another beneficial product is raw honey. In addition to its obvious use as a natural and nutritious sweetener to replace unhealthy refined sugars, I found that it also increased my energy levels and helped me sleep. It also lived up to its reputation as an infection fighter and allergy preventative. During all my chemo, I didn't take particular precaution to avoid sick people (not that I'm recommending that, but I just didn't want to worry about it!), but I didn't even get a cold! I still use large amounts of raw honey. And I cut back on meat to go easy on my smaller colon, ate very few sweets, and ate lots of fruits and veggies. Even with these healthy practices, though, by the end of April, I started to question whether I had reached a point of diminishing returns with the chemo. The body can only stand so much assault. I decided to finish the current round and stop about two months early. Within about two weeks after finishing, I began to feel better, but it took several months until I felt normal. I still have trouble gripping things (tight jar lids, etc.), and I think some of the brain cells disappeared forever. I still have to think carefully and rely more on lists and memory aids than I used to, although I have benefitted from ginkgo biloba and eating lots of blueberries. My advice to people who ask me about chemo for themselves or for their friends, is, "Please don't ask me." Everyone is different. Anyone in a cancer situation needs to do thorough research and pray for guidance. I hope what I've written may be helpful, but don't consider it to be advice about what you or anyone else should do. If you're confronting cancer, just know that God can give you guidance and peace, no matter what.