My first round of chemotherapy really ended on June 22. The regimen was set up in three-week cycles. The first week is a big blast of cisplatin and epirubicin, with fluorouracil (5FU) administered via a battery-operated pump that I carried with me everywhere. I was generally in the infusion chair for about 5-6 hours on those days. On the other two weeks, I just went in for pump changes. They removed the old pump, de-accessed my port (removed the needle), re-accessed my port (put in a fresh needle) and attach the new pump. The most unpleasant part is putting in the fresh needle. It looks like a massive thumb tack (3/4” long) but it’s not so bad if you take a deep breath before they insert it and let it out as they put it in. The oncology nurses are such experts at making this as painless as possible.
I had some roadblocks along the way. I developed anemia, which is not uncommon in cancer patients on chemotherapy, and my blood cell counts got very low. In fact, my red blood cell count got dangerously low in February. My blood pressure was around 80 over 40 at times and my hemoglobin count was down to 4.0. Normally, they transfuse after you get below 8.0. I became extremely pale, weak, and I was apt to pass out. I became so weak that I couldn’t walk unassisted. It turns out I had ulcers and internal bleeding. If I had gone on much longer with the bleeding, I might not be here typing this blog entry. On a few other occasions, my white blood cell count was low enough for me to take a few chemo “holidays” where I didn’t even wear the pump. Again, that’s not uncommon in cancer patients on chemotherapy. They watch white blood cell counts carefully — I have blood drawn every week — to avoid neutropenia.
I had my share of side effects. I did start losing my hair about three or four weeks into chemo. I shaved it off and was surprised that I had a nicely shaped head. Even so, I never got used to the bald look and hated looking in mirrors. I felt like I looked too freakish even though everyone else assured me that I looked fine. Nausea came and went and wasn’t always tied to food intake. When I have nausea, I have dry heaves and make horrible retching sounds that sound like I’m about to die. My hair has started to come back and I have a decent amount on top now. The color is the same but my hair is very fine-textured and light. I had my first haircut recently to get my fluff shaped. My fingernails and toenails are awful looking. They are almost paper-thin and tear easily. The skin on my hands gets extremely dry and starts to peel and crack. Heavy lotion is my friend. I’ve noticed that I’m not quite as sharp as I used to be; that’s probably chemo brain. I’m often tired, so I take naps on weekends and sleep late. I also have a tremendous amount of gas. The gas build-up goes on and on if my body hasn’t found a way to release it. When it builds up, I have pains in my upper chest and upper back. (Of course, that could also be the gallstones talking.) Lately, I’ve started having nausea attacks where I don’t bring up anything but gas. I just dry heave and belch like crazy. It’s miserable, but I always feel much better afterwards. I’ve had to go off of soda, and I miss it occasionally. Sometimes an ice-cold Coca-Cola sounds like heaven on earth. The problem is that I have enough gas anyway with the chemo and any carbonated beverage makes it much worse. To reduce the gas, I use warm drinks, Gas-X, or Maalox. Fortunately, I like chamomile tea, and it’s good for reducing gas and bloating. Another issue that has come up fairly recently is increased numbness in my fingers and toes. I have a small touch of peripheral neuropathy anyway, but it seems to have gotten worse over the last several weeks.
Fortunately, none of my side effects have really been debilitating, even though mouth sores and mucousitis seriously suck. I’ve found some products that help with the side effects. Biotene makes a great line of products to help combat dry mouth. I’ve also found a wonderful toothpaste that doesn’t contain SLS. SLS stands for Sodium Lauryl Sulfate and it’s added to many personal hygiene products. While for most people, it’s a harmless additive to toothpaste, it’s been known to increase the risk of canker sores in others. Chemo patients don’t need any help getting canker sores, so finding an SLS-free toothpaste is a must. The brand I use is called Verve and it freshens, whitens, and doesn’t irritate the lining of your mouth. I’ve also found a good mouth rinse called Rincinol from G.U.M.. It tastes faintly of licorice, but I’ve found it very soothing to rinse with after brushing. For the canker sores themselves, I dab the sores with hydrogen peroxide and I use a product called Canker-Rid that I found on Amazon. It sets the canker sores on fire, but it does help dry them up. It stains terribly, so keep an eye on it when you put it on a cotton swab.
When I had the pump, I was really never completely alone. I always had Pumpy with me, churning away. It made noise occasionally and beeped when it ran out of chemo medicine. The only real inconvenience with the pump is showering. I can do it, but I can’t do it as I’d like to do it. On my chemo holidays, it was wonderful to soak in a long bath or take a long shower without worrying about keeping my lines dry.
Swallowing issues are more of a symptom of esophageal cancer instead of being tied to the chemotherapy. The chemo does tend to keep swallowing issues somewhat at bay, though still I have them occasionally. My esophageal tumor is at the juncture where the esophagus meets the stomach, and sometimes food can get stuck there. It’s very uncomfortable when it happens. Not only do you feel the tightness there, but you start producing some very thick mucous. This is your body’s response to having something stuck in your esophagus. To try to avoid this, I have to remember to eat slowly and take small bites. Any meal with me tends to run long, and fortunately my friends and family are patient with me. That’s why I often eat lunch at my desk because I can take small bites and focus on work. I can’t eat things that have a lot of bread. I never have rolls at dinner now. Pasta and pizza have to be chosen carefully. I can’t tuck into a large plate of spaghetti and meatballs anymore — or at least for a while. Smaller pieces of pasta are usually better, such as tortellini or gnocchi. Pizza has to be thin crust. Interestingly, crunchy food works very well for me. I can put away the chips and crackers! Salads are awesome choices for me, generally. They have to be eaten slowly and carefully anyway. My oncologist has warned me that I may have to go on a feeding tube at some point, but I want to put that choice off as long as I can handle food and drink orally. Going on a feeding tube is such a major life change and I can’t completely wrap my mind around it. I’ve read about people who have been on feeding tubes for years.
What is the good that has happened, I can hear you ask. Well, I’m still here, for one thing and I’m more or less in one piece. I’ve lost about 35-40 pounds and it’s nice not having to carry around that extra weight. I would have rather lost it another way than cancer, but weight loss is weight loss. (Fortunately, the weight loss has slowed down.) I still get up every morning and aside from my hospital stay, I’ve missed very little work. Having a normal routine has become very important for me. I’ve also learned to accept help, and fortunately I’ve received a lot of it from my family and friends. My parents have been such a great help by sitting with me at chemo treatments and watching over me when I was at my sickest. That took some of the pressure off my spouse and I know he appreciated it. My husband has been a rock, though I know he worries terribly. My work family has been such a source of happiness and support; some of them are oncology nurses, and I can get answers to questions by simply tip-toeing across the hall.