The side effects of a brain tumour (blame it on the meds)

It’s 3:07 am on Friday morning October 28 and the drugs are definitely working. I can confirm that 100%. Not a big fan of the drugs. Dexamethasone is a powerful steroid medication essential in treatment of brain swelling and promotes healing, and is on the "WHO Model List of Essential Medicines" among the most important needed in a basic health care system. One of the side effects is euphoria, which is pretty good, but the next one on the list is depression, and the list of side effects is quite a long one. Dexamethasone is the reason why I placed the milk carton in the cupboard the other day. Dexamethasone is to blame for a lot of strange things going on around here these days, and my poor wife Kathryn will attest to that (oh by the way Kat sorry about the hammering in the bathroom the other night at 2:53 am).

It seems like I’m currently in “Wait Mode #2”. The first was a difficult 15 day wait between my surgery and finding out that the tumour removed was cancerous. Now, I await news from my doctor who will be arranging for all the tests to find out where the cancer exists in my body (the one found was likely a secondary tumour) and what the plan of action will be to fight it.

Well I guess on the bright side I could almost convince myself that I’m on some weird kind of vacation, high on a pretty interesting drug that seems to be bombarding me with creativity and ideas day and night, so should I just relax and enjoy this new found free alone time and try not to think about the reality of the situation? I’ve been wanting some free alone time for a while but must admit was not expecting to get it this way. I spent 5 solid days obsessively placing guitar hooks on my wall and turning my office into an office / jam room complete with amplifiers, drums, and my recording gear. I’m playing a lot of guitar and drums, and also getting heavily back into some volunteer video editing for 2 local organizations Bracelet of Hope and Stanley Stick Hockey Association.

But the most fascinating part of my experience so far has been the reaction of others to my situation . . .

The other day I went to Sears to purchase a new shaver, and while paying at the cashier, the cashier next to mine, a very attractive and refined looking middle-aged woman, noticed my 4 ½ inch gash which was partially covered as the stitches had just come out the other day (Dr. C ruined my Halloween costume). She asked me in a rather loud voice and very strong European accent what I had done to my head? I told her I had surgery. She continued and seemed to want to know more. I told her that I just recently had a brain tumour removed. She kept going so I kept going, and I just simply told her the truth - that the previous night (Sunday) I found out it was cancer. She asked me if I had children. I replied that I had two children ages 8 and 6. 

At this point I could feel eyes upon me. There were 3 other cashiers looking our way. There were about half a dozen people in the lineup also looking our way. Her voice seemed to get louder as we exchanged words and I feel like mine got softer, but somewhere along the way, mine started to get louder and by the end, she almost shouted words of encouragement at me and added that “I wish you all the best from the bottom of my heart” with both her hands clutching her heart and this look of genuine concern and compassion on her face.

I was really moved by this woman. I thanked her many times as I took my purchase to leave, and repeatedly shouted back to her my thanks and appreciation for her concern and thoughtfulness. People stared but I didn't care. I left Sears literally in tears. As I left the store into the mall, an elderly woman noticed and looked at me with some bewilderment as I still had some tears flowing so I mumbled “it’s the drugs . . .”.

I had another experience which proved to be quite different when I went to have breakfast on my own at the local Williams Fresh Café. I ran into a former business colleague who at first didn’t recognize me and in fact seemed to believe that I was the new prospect he was meeting at the café. After straightening that out, he asked me about the rather large bandage that I had on the side of my head which could be seen even though I wore a hat. I told him that I just recently had surgery to have a brain tumour removed. Just like the cashier at Sears, he "kept going" except that his “going” meant abruptly ending the conversation and making a quick get-away over to the far end of the café upon receiving my business card. I wasn’t offended at all. I understand that people have different ways of handling these situations, but I wasn’t sure whether to laugh or cry (ie: which Dexamethasone side effect will kick in here) when I received an email from him the very next day with Subject Line “Great Seeing You”:

“How fortuitous that we met yesterday. I hope all is well with you. If I can ever be of any assistance or offer advice for your business needs please let me know. If you know of others that can benefit from my services please feel free to pass this pdf on. Perhaps we could get together for a coffee the week of October 31?”.

Hmmmmm, should I actually take him up on the offer to have a coffee the week of October 31 and find out if he knows what a brain tumour is, and also perhaps inform him that cancer is not contagious? What the heck I have time on my hands and could use some new material for my next blog entry.

Some people just never know what to say at a funeral, for example. “Sorry for your loss” seems like an obvious thing to say, but I admit that until I lost my father a few years back, I didn’t really know what to say either. Having gone through it, though, makes it much easier because you can now relate to what the other person is feeling.

I think the same goes for this situation as well. I’ve noticed such a wide range of reactions to my current medical situation. I can’t speak for others, but in my case, I want to talk about it. I’m OK if you ask me about it. I want to learn more and hear stories of survival. I’m interested if you have a friend or family member who has gone through a similar experience. I appreciate it when people share their stories with me.

Also, when I say I’m “resting” at home, it doesn’t mean I’m lying around in bed all day in agony. Actually quite the contrary. I’m having a nice steady flow of neighbours and friends dropping by and although I don’t want to say it’s been great, I’m going to have to admit that it’s been great. My friends have really moved and inspired me, and I thank you all for that. I’ve said before that the support that both Kathryn and I feel is overwhelming and I just can’t stress that enough.

Each day on the news we read about tragedy, but it’s amazing that time and time again it’s the humanity and compassion of human beings that prevail and shine through.

Thank you, thank you, thank you – to all my amazing family and friends who are helping me get through this absolutely terrifying time. Yes, it’s terrifying and I’m scared. I love life and I want to live.