Mental Games and a Wee Chat

Posted on: Wed, 07/10/2019 - 13:00 By: akpratt
Sailing quote with a leaping dolphin and a sailboat.

I'm now 8 weeks into afatinib treatment. I have found it hard to distinguish between the mental effects of re-staging and the side effects of the new drug.

The re-staging came as a shock. I had thought that I was doing well. I certainly felt good. As I told many of you "If I didn't know I was sick, I wouldn't know I was sick." That's not true any more. Now I know I'm sick. Every little twinge and ache seems to be magnified. There have been minor depression issues at times.

Part of the process of starting the new drug, afatinib, was coming off tamoxifen as well as the durvalumab. There are some benefits. I don't wake up at night soaked in sweat anymore. No more hot flashes. There were some cognitive effects - memory and ability to concentrate - that lifted. I finished some web work that I had had pending for awhile and was convinced that was a result of clearer thinking.

Some of the side effects from afatinib are obvious and others are more subtle. I've been through a couple of treatment regimes now. Taking afatinib is different. There is a bit of rigmarole. I get 28 days supply at a time, packaged by week with an aluminum wrapper and desiccant because light and humidity can damage it. Like the synthyroid I have to take it on an empty stomach, so either an hour before I eat or three hours after. The other treatments up to now have been IV infusions someone else was giving to me. Now I take it myself. That is a mental challenge as I swallow the daily pill. I have to tell myself even though this is toxic poison, it is going to prolong my life. And down it has to go.

There were more mental challenges when the promised chemo rash broke out five or six days into treatment. Getting what looked like a bad breakout of acne affected my self esteem. I felt like people were staring at me, and given my propensity to dress casually, make judgments about me.  Very different from dealing with acne, it was. Don't squeeze. Don't use rubbing alcohol to try and dry it out.

Of course the sunburn that I got shortly after starting didn't help. Yes I was using sunscreen. but I've learned to reapply regularly when I'm out in the sun. And I use a wide brim hat. I could only apply the clinimycin/corticosteriod cream twice a day. However I discovered that keeping my face moisturized with a lotion was a major help. The rash and dry skin has cleared up now.

The self esteem issue was harder. First I had to admit to it. And then I realized that it made for really good jokes about being sixteen again. Everything from "Gonna hangout at the mall." to "I can't eat that. It will make me break out..." People were good about it too, telling me that it wasn't that noticeable. 


Now that the rash has cleared up, here is where my mind goes . Is it a good thing or a bad thing? Does it mean my body is getting used to the drug? Or does it mean that the drug isn't working any more? See? Strange questions indeed. And one that my doctor was able to put my mind at ease over. In his experience there is no correlation between side effects and effectiveness of the drug. Good news!

I'll come back to the mind and questions in a moment.

Another one of the side effects has been occasional heartburn. Tums and other antacids weren't touching it. When I called to check with the nurse and pharmacist as to whether I could take ranatidine (Zantac) or if it would interact with afatinib, the conversation was both very revealing and concerning. It was a bit of a shock when the nurse's first questions were checking that my "heartburn" wasn't a heart attack. Given my experience as a first aid attendant asking those same questions gave me some clue as to what she was thinking. One of the "mentioned in passing" side effects is that the drug can damage the heart. I was able to reassure her that it was truly just heartburn. After checking with both the oncologist and pharmacist I was given the go-ahead to use ranitidine to control it. But it was a wake-up call to the fact that this is a serious toxic drug that I'm taking even though it seems like such a tiny pill.

I was warned about fatigue. I'm sleeping eight and half to nine hours a night as well as a two hour nap most afternoons. And I've had a couple of days where I just got up, took my morning walk, ate breakfast and then went back to bed. Unusual for me and it makes it hard to plan to do anything. Funny too is when fatigue strikes or doesn't strike. I spent a day replacing the PCV (oil trap) system on my Volvo. By the book an eight hour job for an experienced mechanic. And that is what it took. At the end of the day I was exhausted - probably not even safe to drive home truth be told. I collapsed into bed expecting to spend the next day recovering but there was no fatigue. My hands were sore though from the unexpected work.

The mechanicing day was the day that I recognized some new cognitive effects. I'm used to being able to take things apart and then remember how to put them back together. And I couldn't. Without detailed instructions and the help of Del, I couldn't have done it. I would look at parts and bolts that I knew I had taken off and have no idea where they went and what was required to replace them. Scary.

I have had a few other indications of cognitive issues. I locked myself out of my apartment. That has only happened once before and at the time I blamed tamoxifen. I spent the day outside as I had no spare key and had to wait for my landlords to get home. Drinking from the garden faucet to stay hydrated and eating my new snow peas to stave off the hunger pangs. Now I have a spare key hidden near the front door. (As long as I remember where I hid it I'm good.)

Then there is the issue of web-work. After the initial burst of clarity it seems to have gone away again. While I can write and paint, settling in to work on web projects isn't happening. Part of it seems to be that I have to look up how to do everything. Things that I did almost in my sleep have become brutally time-consuming requiring concentration that I don't seem to have. Even writing this email seems to be taking longer than previous emails.

Lest I seem ungrateful let me tell you there have been some highlights. Drew and Lynne, Doug and Kim, and an old friend John Goertz were able to join me for the Relay for Life. This annual fundraiser for the Canadian Cancer Society turned out to be a mix of poignant and fun reminders of how deadly this cancer thing can be. Walking the survivor's lap to start the day and the luminary lap to end in the evening brought home the impact that cancer has. When we managed to convince the DJ to play "The Last Saskatchewan Pirate" by The Arrogant Worms ( ) we found out who in the crowd was from Saskatchewan. And there was the moment when I was trying to catch up to the long legged brothers of mine and realized that they were doing all the actions to the "Chicken Dance." Conversations about memories, about our disease, and Pratt family characteristics (stubbornness, workaholics, lack of planning) and a good time was had by all.

Speaking of planning, a few days later my sister Alison showed up. She had another commitment on the Relay weekend but decided to make the trek all the way out here anyway. We met in Hope and spent most of the day wandering around, talking, and enjoying the signage and chainsaw carvings. Thoroughly enjoyable and I'm glad that she and Barry made it out to the Wet Coast. Finally.

Several days later I got an unexpected text from Evan, my youngest son. He is spending the summer in Nanimo teaching Basic Infantry. He spent a night here on his way through to Vancouver Island so we caught up on how things have been going since Christmas when he was last here. We're looking forward to some camping weekends together when he gets organized.

One of the grief milestones that people often talk about are birthdays. Yvette's on June 30 was my first without her. With a little forethought it was a good day of remembering and celebrating our time together. I baked a birthday cake using a mix that she had picked up at "Deals Only" The frosting didn't come out very well but the rest was delicious. I started painting a card for her - still not finished - but that is the nature of our birthday celebrations. She always thought that they did Fourth of July celebrations just for her birthday and when we added Canada Day to the mix it just became a week of celebration.

I met with my oncologist yesterday (Tuesday) for a wee chat - as I put it when asking for prayer in church. This was more a visit to make sure that nothing major was going wrong. He encouraged me in a variety of different ways with lots of laughter and good humour. My next visit will be the one where we review a CT scan to see what is happening. After my description of the cognitive issues, he added a head CT scan to the mix. It has been a year since my last one. Both my breast cancer and my lung cancer can metastasize to the brain so this is to check on it. I don't have any of the major symptoms - headache, differing strength or balance issues so I'm not too worried about it - yet. After a bit of discussion we decided that the fatigue is probably due to the toxicity of the afatinib and not the thyroxine as those values continue to be stable.

The cancer journey at this point is a mental one. Lots of little issues that add up to a lot on my mind. My daily Bible study is taking me through the book of Joshua. Not a book that I have paid a lot of attention to in the past. But this is the moment that the Israelites have been waiting for. After wandering in the desert while they waited for Moses to die, they were eager to get to the new land. But they were intimidated by all the reports of challenges in the land. In many ways that is my journey at this point. I'm entering that phase of cancer treatment that many call the "new normal." The dramatic chemo/radiation treatments are over and there is a whole new series of little challenges to overcome.

In Joshua 1:3,4 God is speaking to Joshua and He puts it this way:

It’s all yours. All your life, no one will be able to hold out against you. In the same way I was with Moses, I’ll be with you. I won’t give up on you; I won’t leave you. Strength! Courage! (The Message)

I feel your support and encouragement. Whether it is gentle words in church or on the phone or in a card, I know that you are with me on my journey.

Thank you.