The Accidental Junkie

This may make your hair stand on end or fall out. Whatever you would least like to happen to your hair, this will do it.

If you've been reading along from the beginning you may recall that I don't like to take medication unless it's really necessary. I'll suck it up with a headache or whatever, and even struggle through allergy season, without taking pills until I am really desperate. There have been a few times over the years when there's been no choice, and I have been on some prescription things for stomach troubles, but otherwise I like to think I am pretty clean.

You might also remember my terrible pain, numbness and loss of sensation in my arms that was never fully explained, and how I remain suspicious of the antibiotics I was put on.

It was during my sleuthing phase that I discovered that the Records department of the hospital would have a complete accounting of all the medication I was given while in the hospital. I had to personally visit the department and provide ID, and was allowed to review my records and make notes, but not make any copies, or if I wanted to it was going to be $80 or something. (Psst. I snuck photos of the pages with my phone. Screw the man!)

The standard blurb is that all pharmaceuticals come with some side effects, but that someone has decided the benefits outweigh the risks.

So anyway, I went in to the records department to find out just how much Cipro I was given but I was completely staggered by the variety and quantity of pharmaceuticals I ingested during twelve days. Of course, as I later realized, I didn't get Cipro until I left the hospital, but what I saw in my records still alarmed me.

Below is my edited transcription of the hospital records, starting on June 23 and working back to June 8, the day of my surgery, and encompassing both of my hospital stays.

Start	End	Medication	Dose	My comments
23/06		Herbals
		Ibuprofen	400 mg
22/06		Lorazepam	1 mg	Anti anxiety drug (Adivan)
		Sodium Chloride	10 ml
		Lactulose	30 ml	Laxative
19/06	29/06	Ceftriaxone in D5W	1 g	Antibiotic
	29/06	Metronidazole (Flagyl)	500 mg	Antibiotic. Adverse effects can include peripheral neuropathy (nerve damage), tingling/numbness in hands and feet. Listed by the US National Toxicology Program (NTP) as reasonably anticipated to be a human carcinogen.
		Dimenhydrinate (Gravol)	25-50 mg	Side effects include ringing in the ears
		KCL	1000 ml	A potassium supplement
10/06		Sodium Chloride	10 ml
	15/06	Morphine sulfate	2-4 mg	Pain relief
	15/06	Oxycodone	5 mg	A different pain reliever. WTF?
8/06	13/06	Acetominophen	650 mg	Tylenol
		Diclof/MISOP	50 mg	Side effects include ringing in the ears
		Dimenhydrinate (Gravol)	25-50 mg	As above
	12/06	Gabapentin	200 mg	For relief of neuropathic pain
	10/06	Ketorolac	15 mg	For pain relief. It is an NSAID (Not steroidal anti-inflammatory, same family as Ibuprofen)
	13/06	Morphine	150 mg
	13/06	Morphine sulfate	5-10 mg
	13/06	Naloxone		A special narcotic that reverses the effects of other narcotics
	9/06	Ondansetron	4 mg	Known to cause muscle stiffness/spasm
	13/06	"	"	"
	13/06	Oxycodone	5-10 mg
	13/06	Prochlorperazine	5-10 mg	Known to cause severe muscle stiffness as a rare serious side effect
		Enoxaparin	40 mg	A blood thinner. I think you get this so your blood doesn't clot as you're laying still for long periods after surgery.

I'm really aghast at being given possibly carcinogenic Flagyl as part of my cancer treatment. Are you fucking kidding me?

I also orally took Cipro, Flagyl and Tramadol (a pain killer) at home after I was discharged from the hospital a second time.

I'll tell you what bugs me the most. You know how when you get a prescription from the pharmacy, you get an information sheet explaining all about the drug and its possible side effects? And how you might even have a little chat with the pharmacist? Well, when you're in the hospital you get none of that. They give you whatever they deem necessary. I suppose all those forms I signed at some point gave them the authority to do this. Something about allowing the doctor to make whatever decision they feel is right based on my needs. So, before I was given antibiotics that obliterated bacteria in my digestive tract, including healthy ones, I was never told what I was being given or what the possible side effects might be. I did have a hospital pharmacist visit me once during my stay, but it was inconsequential, and to be honest, I don't remember much of the conversation.

And I've said it before, but when I was reporting all these weird pain and numbness problems, why didn't any nurse or doctor or the hospital pharmacist ask themselves if I was having a negative side effect and have me stop taking the drugs immediately? It's easy to read too much into it probably, but to me it seems as though there is a bias against questioning the pharmaceuticals, and also against reporting the problems and following up on them. They basically blew me off. If I'm right and my case is not unusual, just how 'rare' are these side effects anyway, if medical personnel don't take patient complaints seriously and/or escalate them? This is a pretty serious question, especially with antibiotics.

So where does that leave me? Well, I have some annoying numbness in parts of my body, some bad memories and a distrust that lingers. I had nearly a full year of physio to regain most of the use of my right arm and shoulder, and thank goodness Dale has 100% coverage on her benefits plan, or I'd be out a couple of thousand dollars. But I also am still here and didn't get an infection when blood was getting into my colon from outside, or when stuff got out of my colon into my abdominal cavity, so I suppose the risks did outweigh the benefits.

There are no easy answers, and I'm not even sure what all the questions are.

Modern medical science is wonderful and I have had the best possible outcome in my situation, but I hope I'm a little wiser.

If I learned anything, it's that you, and only you, are your own best advocate when navigating the health care system. I said in my first post this wasn't going to be an advice column but here goes anyway. Question everything, and don't stop asking questions if you don't understand. Don't accept medication until you know exactly what it is, what's it's supposed to do and not do, and what the side effects are.

The toughest lesson? Sometimes they don't know what's wrong or why. The human body is dazzlingly complex, and the doctors and nurses are just human beings and they don't know all the answers sometimes.

"So, how are you feeling?"

 In pretty short order I can now bring you almost to the present day (October 2011), because the big events got fewer and more spread out in time as my healing progressed. I'm going to keep writing after this to post about things that I think are important or to update you on my status, but this is really the conclusion of my story (so far anyway).

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.

Most of the time you can tell from someone's eyes how they are feeling when they talk to you, especially those who don't really know what to say. These ones are a little difficult to handle if you're sick. I really don't expect anyone to become emotionally invested in what's happening to me, but having someone not say anything to you at all is a little off-putting, and can make you think they don't care about you at all.

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? Or 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.

Cancer funding is broken

I started off thinking I was going to do a bunch of research and number crunching to see if my hunches about misallocated funds for cancer research and treatment were justifiable, but I quickly found someone had already done the work for me, and yes, my fears are well founded.

The reading here is kind of hard slogging and heavy on the statistics but this is pretty important stuff considering we will all be touched by cancer at some point. Bear with me.

I had what I guess you could call a fairly mild case of colon cancer, if there is such a thing, and as a result I really didn't need that much support after my surgery. Even so, I felt what I got was sorely lacking and I had to do a lot of fact finding on my own. I couldn't say how much of this is related to conditions with my doctors and hospital, or if it's more systemic.

But even to a casual observer, the public profile of say, breast cancer, is very high, while the profiles of the equally or more deadly colon, lung and pancreatic cancers are relatively low. Can you name the colour of the colon cancer ribbon? I couldn't.

None of my following arguments are meant to suggest that my cancer is more important than someone else's, but I believe we ought to be asking ourselves if all of our tax dollars and charitable donations are being spent in such a way as to benefit the most people, or those with the greatest hardships.

I found a report from Charity Intelligence Canada which confirmed many of my suspicions, not only about colon cancer specifically, but the whole cancer industry, as it is sometimes called. This report came out in April 2011 and is linked to here, in a CBC story and the actual report. If your life or a loved one's has been touched by cancer, this report is well worth a read. It's well written, rational and makes its points clearly.

http://www.cbc.ca/news/health/story/2011/04/25/cancer-charity-intelligence.html
http://www.charityintelligence.ca/pdfs/download.php?report=Ci_Cancer_Report_April_2011.pdf

Here's the killer quote from the whole report, in my opinion:

...oncologists and cancer researchers are generally of the belief that cancer, as a family of diseases, is unlikely to be “cured” in the way that infectious diseases such as polio and smallpox have been eradicated in the developed world.

The best we can hope for is to transform cancer from a disease that Canadians die from to one that they can prevent or live with as a chronic condition, while mitigating the hardships associated with being a cancer patient or survivor.  

In the way of our times, we are tempted to chase after nonsense and bullshit, in this case a 'cure', when such a thing is unrealistic. I go crazy every time I hear 'run for the cure' or whatever catchphrase is being bandied about.

The report has identified four cancers that are underfunded relative to their deadly impact on Canadians: pancreatic, stomach, lung and colorectal.

What follows are what I consider to be some highlights from the report.

We are making some progress. The death rate for cancers in Canada peaked at about 170/100,000 population in 1988 and has dropped to less than 140/100,000 in 2004, about the same level as the mid 50's.

Promising treatment drugs are sometimes not developed because they are unprofitable. This is not an attack on the pharmaceutical industry, but rather a suggestion that we should find a way to factor in the societal cost of cancer when making research decisions.

By many measures, Canada is a leader or punching well above its weight when it comes to cancer research, and also does the most cost effective cancer research.

This quote from the report is very telling:

Based on the primary drivers of reduction in Ci’s (Charity Intelligence) Top 10+ cancers, Charity Intelligence attributes the reduction in overall age-standardized cancer mortality rates between 1988 and 2004 as follows: 52% prevention, 25% screening and 23% treatment. 

Translation: Our progress on mortality is mostly due to prevention, not 'cures'. We don't need to cure cancer, we need to stop giving it to ourselves. The next big benefit is from screening, i.e. catching it early, then treatment.

If all cancers were diagnosed at the localized stage (i.e. in the organ where they originated and before they had spread to other parts of the body), cancer mortality rates could go down by as much as 48%.

These next two graphs made my jaw drop. They demonstrate pretty clearly that we need to take a new look at where the money is going. Take a look at lung and colorectal cancers in each graph:

 The knockout punch:

Collectively, pancreatic, stomach, lung, and colorectal cancers represent 46% of potential years of life lost to cancer in Canada. 
Yet, these four cancers collectively receive only 15% of cancer-specific research funding and 1.6% of cancer-specific charity funding.

Because of their high mortality rates, these cancers lack survivors to tell their stories and rally support.

Canadians donate 151 times more to breast cancer-specific charities per potential year of life lost than to the four most lethal cancers, combined.

Ci suggests that Canadian donors consider cancer funding decisions in terms of the lives each cancer takes away, to increase the number of lives saved.

Lots of facts and figures right? So what are you supposed to do?

Prevent.
Don't smoke. Watch your weight. Exercise more. Cut down on the booze a little. Eat a healthier diet. Educate yourself about cancer risk factors.

Screen.
Go to your doctor for regular physicals, at whatever frequency is recommended for your age. Educate yourself about cancer screening and report anything unusual, even the smallest thing, to your doctor. Hiding from your potential health problems is not tough or cool. It's dumb. And remember, it's not just about you, it's about you and everyone who cares about you.

Donate wisely.

Donate more.