If chemotherapy is my friend, then the boredom that comes with it enters into my life as an uninvited guest.
Living with chemotherapy’s mental downside is that you enter into treatment with too much time on your hands.
For me, filling long hours each day is more difficult than actually coping with a cancer diagnosis. I can now understand why some people purposely choose to work while in treatment; they’d go stir crazy otherwise.
My next door neighbor who is also in breast cancer treatments and is waiting to enter the world of chemo, mused the other morning that as professional women when we’re at work we think about all of the little projects we’d like to do if we had spare time on our hands.
With cancer we do have spare time on our hands, but it’s the kind of time that doesn’t lend itself to working on projects that have been left on the backburner. It’s hard to attend to the projects wish list when you’re recovering from surgery, attending a barrage of medical appointments and tests, and being kind to your body as it undergoes the shock of poison pulsing through it with chemotherapy.
My chemo is 18 weeks long. That means that I have 18 weeks to fill my time with. That’s a lot of time on my hands.
While awaiting surgery and feeling well, I attended to the “projects list” in my house. I had six weeks of waiting, and then several more after that once I recovered from surgery, while waiting for chemo. A lot of that time was also filled with planning our daughter’s wedding shower and helping with wedding plans. It’s pretty well wrapped up with the wedding less than two weeks away.
For me so far, the most difficult struggle is the lack of routine that comes with fighting cancer. Your loved ones and friends get up every day and go to work. They maintain their routines, social circles, and contact with the outside world. They come home feeling that they have accomplished something each day by being in the world or work and solving problems that need their skills, energy, and attention.
With chemo, you live alone each day. There is no routine because you don’t know how you’re going to feel. You spend many hours each day alone wondering how to occupy your time. You don’t have a plan for your day, so you don’t feel like you’ve accomplished anything.
You feel cutoff from people. It’s understandable. You’re told while undergoing treatment that you have to restrict your presence around crowds and public places because of the potential risk of germs and lowered immunity.
People want to respect that and know that you are needing to cope with your illness. They’re afraid to call because they fear you’re resting or sleeping and don’t want to intrude.
They also know that their contact with you can potentially pose serious health risks for you while undergoing chemo treatments. Chemo drugs can also be toxic to others around you for the first 48 hours, so the patient and those with them in this time have to take precautions to prevent those who do not need chemo from being exposed to it.
Some folks are scared to be around you because they don’t want the physical proof that you are not only sick with cancer, but getting sicker with chemo. They simply can’t deal with the mirror of someone else’s mortality being placed in front of them, which in turn forces them to look at their own mortality. A cancer diagnosis does not give you the option of when to hold the mirror of mortality in front of you, you hold that mirror in front of you daily.
I have always been a goal-oriented, driven Type A personality that did not have idle moments on my hands. In reflecting on my life, I’ve spent the last three decades building a career, working full time (except for brief breaks with childbirth and toddlers), raising a family, and running a household. There was little time available to develop hobbies, so I don’t really have any.
The one hobby I do have—sewing—can’t be done while I’m in chemo because I risk injury in using sharp scissors and needles and pins. Any break in skin with a cut, poke, or bruise can create a potentially serious infection because of lowered blood cells and platelets that come with chemo treatments.
I’m not a television watcher, never have been. Well-intentioned people around me say it’s now a good time to take up an interest in watching t.v. There’s a multitude of talk shows, soap operas, and reality shows. Not for me. My t.v. limit is a couple of hours max a day, and some of that is news.
Others say it’s the time to read all of the books you have always wanted to read and enjoy them. There are many books waiting to be read, but after a couple of hours of reading a day I no longer have much energy left to concentrate.
Still others say, “take up crossword puzzles, jigsaw puzzles or Sudoku.” Nope, not for me.
I’ve never been musical or play and instrument, so that option isn’t available to me. There is only so much daily surfing of the internet I can handle, maybe an hour (although I do spend a more time on the computer if friends and family send emails). Games generally need to be played with others who are at work while I am at home.
But the trained writer in me who has plied this trade in some form or other for over 30 years, feels pulled to pen a blog. My tech savvy kids suggested it knowing that their mother would need a therapeutic form of distraction. And, as a cancer survivor friend of mine has said, it’s good therapy for me. He’s right. It is a diversion and a time-occupier, which gives me a couple of hours per session to write this e-diary.
Admittedly, it’s neat to see who the blog’s readers and followers are and where they are coming from. There are readers literally from around the world from destinations in Canada, the U.S., Europe, and Asia. I never thought that this diary would reach to so many places, and would interest so many readers. It was set up as a tool to keep in touch with family and friends who expressed an interest in wanting to keep up to date with my cancer journey.
These same family and friend followers are also the ones who keep me grounded in not becoming overwhelmed by the living with cancer experience. I trust that as they read this, they may have ideas for me to occupy my time. I gratefully welcome their suggestions.
So I mosey on in this cancer journey searching to fill my time productively. I continue to fight the mental beast of coping with cancer with Strength, Courage, and Determination.
It’s Saturday, and I’m closing in on ending my first week of chemotherapy. I’m feeling much better since writing the last blog.
It feels like I was knocked down, but not knocked out, with my first flush of chemo. My energy’s rising. I feel like I could handle a 30-minute walk if I could count on the weather co-operating by briefly holding off the rain.
The light-headedness is gone. My body’s feeling warmer as my chemo-shocked central nervous system is working better to regulate its temperature. I’m only cold to the core first thing in the morning for a couple of hours until breakfast food converts to energy to warm me. Herbal teas help, but I do miss my morning java.
Somehow greeting the morning without a coffee is a missing piece to starting the day. But I know I can’t have coffee (I only drank one cup per day), black tea, colas and any other caffeinated beverages as they deplete fluids in my body that I’m trying to preserve to flush out the chemo.
My chemo nurse said the first three days are the worst in treatment. I concur.
My treatment was on Monday. I felt fairly normal for the first 36 hours. By Wednesday and Thursday I was sick and lethargic. I felt more out of sorts than sick. It was similar to but different than the flu, and not what I had expected.
Today, the treatment symptoms are becoming part of my new normal in living with cancer. I still have a dry mouth and my gums are getting sensitive with the required five times daily tooth brushing. The smell of food cooking still churns my stomach, so I’m limiting my exposure to kitchens and barbecue odors. Cold foods work best.
Chemo is also doing an interesting thing with my digestive tract. If you’ve ever been on a high dosage anti-inflammatory medicine and your stomach hurts and is upset, its similar to what it feels like with chemo. Except that this will go on for weeks versus a few days to treat an injury.
For the digestive upset, my medical oncology nurse recommended a minimum of two daily portions of yogurt to line the stomach against chemo irritation. It seems to work. I know when I need to have a yogurt snack, my stomach reminds me.
I now have a sense of taste and want to eat. But in these past two days, chemo again has changed how food tastes. Sweeter foods now taste more sweet (almost nauseating), acidy foods taste more acidic, and sour foods taste more sour. Bland foods seem to work best but have their limitations; coupled with my gluten intolerance, that takes me away from many comfort foods I’d like to have.
Chemo is teaching me all about new adventures in how to cook bland--blach! It’s similar to how I introduced bland foods to my kids when they were babies as they graduated from baby food to table food.
If this week’s reaction is a pattern in how my body accepts chemo treatments, and it should be according to my chemo nurse, then mentally and physically I know that the first three days are the worst. I can live with that, particularly now that I have gone through chemo this week.
Next week, with my lowest immunity in a chemo cycle arising, things may be different again in how I will feel. For now, yesterday and today are feel good days and I will take them as bonus gifts in this cancer journey.
The only other new, but not unexpected, symptom is the gradual loss of my hair. I can see small alleys on my scalp where the hair is starting to fall out. By the end of next week my chemo nurses tell me that the cocktail I’m on will have stripped me of all of my hair.
A bevy of caps and hats wait to be used to cover my head, keep it warm, and prevent heat loss and sunburn. My wig sits on its stand waiting for its debut, along with false eyebrows and eyelashes. Add these to my breast prosthesis and prosthetic bra, and I’m starting to feel like I’m cancer’s Bionic Woman of television folklore (circa 1976-78).
I continue on this cancer treatment journey as both the patient and the observer. I keep walking on this trail by moving forward with Strength, Courage, and Determination.