By mid-August of 2010 I was back to work a little bit, although it was slow going. I had lost quite a bit of momentum, and since my new business was still in the building phase, it took quite a while for me to get my mojo back.
Also about this time, some of my blood tests revealed that my hemoglobin levels had climbed up to a normal level. This was a relief because by this point I had begin switching over to vegetarianism, and veggies are always at risk of not getting enough iron in their diets. So far so good.
I've stuck with the vegetarian diet pretty well, although there has been the occasional salmon fillet or piece of chicken. I don't miss eating meat at all, although I do hanker for cheese once in a while. I've decided that I don't care what I eat, as long as it tastes good, and there are plenty of delicious things to eat for vegetarians. I really would like to go all the way to vegan, but it takes quite an effort (man, I have to learn how to cook) and I hope to get there gradually. I have to admit, it's pretty hard to get excited about Nutritional Yeast Flakes. To my delight, I even have got Madeline to enjoy a few of my favourite vegetarian dishes with me.
I continued to go to physio for the arm and shoulder problems and worked my way back to about 99% range of motion in my right shoulder, which is where most of the lasting effects were felt. This was a pretty good result. At an October 2001 visit to the neurologist, he speculated that my numbness symptoms might improve a little more but probably not by much.
As part of my therapy I was advised to do yoga, which at the beginning was really the only thing I could manage anyway, and now I'm hooked. It's so good for mind and body, and can be quite challenging physically. One of my workout videos talks about trying to find peacefulness and wisdom (while twisting yourself into some absurd pose), and we could all use a little more of that couldn't we?
I've had four oncologist appointments with Dr. D. Each time, they have done blood tests that showed a steady or decreasing rate of CEA levels, which are a key indicator for cancer patients, and especially those with gastrointestinal cancers. At one of these appointments my survival chance was officially pegged at 91%. I'll take it.
I had a special anniversary over the summer of 2011 when I had my second colonoscopy. Even more fun the second time around. The good news is the Dr. B found no evidence of anything unhealthy in there, not even a polyp, and I don't have to go back for another one for two years. On the downside, Dr. B couldn't actually inspect my entire passageway, because I now have a 'tortuous colon', which is the medical way of saying it has lots of twists and turns. This second colonoscopy was quite painful so I'm relieved I won't need one yearly.
I continue to have way more bathroom trips than I would like, but have adjusted now and it's not so bad. If having six or eight poops every day is the price I have to pay for staying alive, how can I complain? And I'm told that sometimes this situation improves very slowly over time, however based on my own feelings I think it's a good as it will get. I guess I'll have a lot more time for reading.
I am not taking any medication.
In the Spring of 2011, I participated in the Colon Cancer Walk in Burlington. I was thrilled to raise about $2,500, which put me near the top for the Burlington event and in the top 20 for the country. If you are one of my donors, please accept my sincere thanks. If you are not, you'll be hearing from me soon. I'll be surprised if I can match that amount again next year, so I decided to volunteer to be on the organizing committee for the 2012 walk. I had a laugh when I approached one of the ladies who ran this year's event. Her desperate 'YES!' when I offered to get involved alarmed me slightly. I intend to stay involved in raising funds and awareness for the rest of my life.
I've been asked how I'm feeling hundreds of times over the past year or so, as you can imagine, by friends and family and doctors and nurses. It's really very nice to be asked.
It's a pretty simple question but quite often it has a completely different meaning depending on who's asking.
I've had a lot of time to reflect on many things during this period, and I've spent a great deal of time thinking about not only this question, but the whole dynamic of being unwell and the way it changes (or doesn't change) the way others relate to you.
People tend to fall into one or more of these broad categories in terms of how they look at you or speak to you:
- Some people don't have much experience to draw on when dealing with someone who's ill, and I can see the apprehension in their faces. They are concerned but don't really know what to say.
- People are afraid to ask because maybe I don't want to talk about it. In my case, this wasn't true. I'll blab about myself all day long, but other cancer patients might not want to be open about it.
- Some avoid looking at you altogether or won't speak to you.
- Others look at you like you're already dead.
- Some don't know what to say, so they either say nothing or they say the wrong thing.
- Others have a sincere desire to know everything about what's happening to you.
Sometimes I would be asked how I was feeling, and I would say "I can't complain", and then launch into a litany of aches and pains or whatever, and I could see people's eyes glazing over. I was just getting the hang of this too. "I had five craps before breakfast this morning. You?", is probably not the response most people are expecting to "How are you today?"
At some point it occurred to me that "How are you feeling" is really just a substitute for "How's it going?" It's a greeting, even to a sick person, and the person asking doesn't want the real answer but asks the question as a courtesy. This isn't always true of course, but even so I realized that this one question probably has several meanings depending on who's asking.
I have prepared this helpful table to guide you through your next encounter with a sick person. Well, not any sick person, just me I guess.
|Actual question or statement||What you meant||What you should have said|
|How are you feeling? |
Are you feeling better?
|I want to express my concern for you but I don't really want to know any details, and I especially don't want to hear any bad or gross things.||I hope you're feeling better soon.|
|No discussion of my illness or sometimes even no eye contact.||I'm concerned for you but I don't know what to do or say. I'm afraid you don't want to talk about it and I'll upset you if I ask.||I hope you're feeling better soon.|
|You look great.||You look like shit.||You look like shit.|
The lingering thing, and if you remember, the thing that got me started with this blog in the first place, is the emotional and mental part of the healing. I haven't read a single book on the topic nor have I attended any support groups. I suppose I ought to do one or the other though. I have reached out into some online support groups, but in a way I feel out of place in them, because so many of the users in those groups have such huge problems compared to mine. In a way that is healing in itself because it demonstrates that I should be grateful for my outcome.
This brings me to one of the two remainders for me: feeling bad about feeling good.
It's a weird thing to feel guilty about being a cancer survivor. I can't explain it. I think I've done a decent job articulating my experience in the other areas up until now, but I'm kind of stumped on this one. Unfinished business I guess. I remember my first foray into a support group on a facebook page. Someone came on and made a statement or asked a question about something, and I cheerily chimed in about how great everything worked out for me, and 'chin up' and maybe they could have the same result and all that. The reply from this woman in her mid 20's came back that she had stage IV cancer and was having her third surgery and a bunch of punishing chemo and radiation treatments to boot. Wow, had I made a terrible error in judgement there. That was no place for a Pollyanna. A dear friend lost her father in law to cancer last year, and now it's stalking her mother in law and her own parents. Sheesh. The reality of how serious this is for other people and that not everyone was going to have a happy ending smacked me right between the eyes.
The second remainder, if you'll pardon the hackneyed imagery, is the grim reaper staring over my shoulder. The cancer can come back anytime, and it does for lots of people. Winning a second or third battle is a lot less likely. Of course, having had colon cancer is a major risk factor for having colon cancer again, Well, duh. This is where not having the clear linkage between cause and effect for colon cancer is really hard to swallow. Don't want lung cancer? Don't smoke. Easy-peasy. Not so with colon cancer, but I'm trying to change those few things I can; they might or might not make a difference. At least I will feel like I am doing something that I can control that might help. And besides, I could get hit by a bus tomorrow. So could you. You never know, and what's the point of stewing about it?
Am I a good person? Have I done anything useful with my life? I don't know but here's to second chances.
What does it all mean? Fucked if I know, but I'm glad I'm here to keep asking the question and surrounded by people who love me.
And so, after 18 months, litres of blood, pain killers and antibiotics, pain, hundreds of walks, dozens of doctor appointments, thousands of words and fifteen blog posts, that's how I'm feeling.
Pretty good, thanks.