What You Might Not Know...
It hurts not knowing what to say. ~ Prakhar Sahay
In the four-plus months I've been fighting this beast, I have had a tremendous amount of support. The thanks I give for all of you does not come close to how my heart swells to know there are so many pulling for me. A number of my friends have thanked me for being so honest in writing my feelings because it helps them know what someone going through this experiences. I write it for myself to remember, but I also write it to let others know they are not alone.
For years, I heard many stories of how cancer patients reacted to the diagnosis, to the pain, to the treatment. One wanted to throw himself into the middle of a heavily trafficked road, how another wanted to run screaming down the street, how another stopped talking. There were times that my mother, a 35+ year breast cancer survivor, would irritate me by bringing up her fear of recurrence. The feelings are not cries for attention. Stumbling through this journey has given me the insight to understand all that; I have been there.
Chemo treatments are not hard in and of themselves. A phlebotomist checks your blood count to make sure it's high enough for you to have the infusion. If your white count is low, you have to delay treatment until the oncologist can build the count up. I'm not sure about every cancer patient, but I do know that those of us with breast cancer get to wear the Neulasta injector after the infusion. Neulasta works against to chemo to build the white cells that the chemo is suppressing.
Most people who have had Neulasta treatment will tell you it is a necessary evil. The bone pain that accompanies it is debilitating. Interestingly, Claritin (the allergy drug) alleviates a lot of the pain associated with the Neulasta treatment. The nurses had forgotten to mention that to me after my first infusion, and there were times I thought about running into traffic to stop the pain.
Fatigue is another side effect of the chemo drugs. As someone who is constantly on the move, I find this one of the most difficult things to combat. Getting comfortable is not easy, and resting is not easy. For five or six days following the first two infusions, I did not sleep more than 15-20 minutes at anytime of the day or night. The suggested melatonin had little effect on me, so I begged for something before this infusion. We'll see how well Lunesta helps tonight.
Food & Food Safety
I'm very lucky in that I have severe nausea, but I have not lost my lunch, as it were. I have lost most of my taste buds, as do most chemo patients. I can taste if something is sweet, but I cannot tell you what flavor it is. Salty or savory foods are mere textures to me. I don't want to eat meat or anything that has cream or milk in it. It is very weird to have just the sensation of texture without an identifying taste.
After the first infusion, all I wanted were fresh vegetables, pasta, toast, and watermelon. I drank ginger ale, tea, and lemonade. My tastes changed with the second infusion. I could not stand ginger ale, tea, or lemonade, so I drank Bai, flavored waters, and smoothies that I made myself. I did not want toast, so for most meals, I had either lentil soup, hard-boiled eggs, or mashed potatoes and some little protein that I forced myself to eat.
Since the third infusion, I want nothing. I tried lentil soup last night and threw it out. I ate watermelon and made a smoothie this morning, but they taste like nothing. I'm roasting butternut squash as I write this in hopes that I can eat it.
Interestingly, though, there are many things that chemo patients are not supposed to eat. Fresh fruit and vegetables top the list because bacteria and chemicals can affect the low immune system. I have to thoroughly clean any fruit or vegetable before I can eat it. Also included in the "no-no" list are:
• Lunch meats or hot dogs unless they are thoroughly cooked and hot
• Soft cheeses made with unpasteurized milk (goat, Brie, bleu, )
• Pre-washed salads and slaws unless you rinse them again
• Meats that are not well-done (no pink)
• Deli foods, uncured salami or bacon
• Blemished fruits and vegetables
• Smoked fish, sushi, sashimi, and even some cooked fish (due to high level of mercury)
• Soft-boiled, over-easy, or poached eggs
• Raw sprouts
I'll be honest and admit that nothing appeals to me right now.
You may remember how stressed I was about losing my hair. It didn't take long for me to gain a new appreciation of not having to fuss every morning. I like having the option of wearing a cap or wig when I go out. Since I got over the learning curve with putting on the wigs, I'm happy that I don't have to use a blow dryer and curling iron.
Speaking of going out, I can't. The nurses have told me to avoid people at all costs....do not let anyone in the house, and do not go into any places where there are groups gathered. Until my blood counts come back next week, my ventures out include only the doctor and the pharmacy. I know we are all stuck, in some way or another, in a stay-at-home mode. Imagine, however, that the highlight of your week is a five-minute trip to pharmacy.
There are many times as I go through this that I do not want to talk...even to Mike. If I don't feel well, I just don't have the energy to say much. People who call or write will tell me they don't know what to say. That's okay. Just talk about anything. If I'm in the mood to talk, I probably don't want to talk about what's going on.
Mike tells me that if he has to shelter at home, he's glad he has to do it with me....And then he adds that I'm not very entertaining lately.
It's a good thing he's a good nurse.