(By Wes Clark - he wrote this a couple of years ago and has been cancer-free since May of 2006. This article is about him going through chemotherapy).

Before you start, I strongly recommend listening to, “Little Acorns” by The White Stripes. On dexamethazone, you might cry like a pansy like I do — but man is it a great song. I don’t think they were writing about Cancer - but it’s hard not to feel an incredibly personal connection to that song… for me. It’s the cheesy sampled intro from what sounds like a religious call-in-show that puts the entire song into perspective, so you really have to hear it over just reading the lyrics.

To me this is boring, but I think somehow I may be helping somebody out a little that has been diagnosed with Cancer and is awaiting treatment. For the most part, my daily life has been very easy. In a conversation I had Friday with another Cancer patient on her last chemo-therapy treatment — I got a glimpse of what life is like for people on their way out ; hopefully healthy and Cancer Free.

She had all the usual complaints I would have, Cisplatin - which is actually Platinum they inject you with to kill tumours - leaves a horrible taste in your mouth. How horrible it is depends on your concept of the world, myself ; I never really made the effort to complain about it but of course, you have to complain about something and being alive isn’t worth being upset about. It’s kind of funny, in retrospect what I’ve overlooked as side-effects of the chemotherapy. Everybody wants to know how you feel, to see if you have any problems and I’m always saying, “Fine…” like, “Why are you asking?”. It takes effort for me to think, “Well, I get pimple break-outs and I had a small sore in my mouth that goes away at the end of each session and my poop is a little hard without the stool softeners and I have a bad taste in my mouth for a few days after week one, and I get a little emotional but it passes almost instantly and I’ve had no nausea”. These are things I have to consciously consider and recite to myself if anybody asks because… to be honest, I’ve felt worse in life. I expected to feel like I had the flu 24 hours a day at best ; I feel like I have it easy.

She is on dexamethazone as well and it sounds like the emotions of anger and sadness and super sensitivity aren’t just something I’m experiencing on my own, they are in fact drug induced. Which is good because I started bawling for all of, I shit you not, 10 seconds today while driving over to meet my buddy for some late night driving and story-telling. It ends about as quick as it starts and in the end you’re left asking yourself…. “what the hell am I upset about? Oh …. it’s the drugs”. It’s a very strange concept, most people don’t cry for no reason. Sometimes, we may think we do, and then we realize there’s often a deeper, more unsettling reason trying to surface. I’m quite sure for the first time, I’m getting emotional about nothing, as if a switch is triggered that says, ‘Crying Neurons FIRE!’ and then robots come out and have a laser-beam fight and god looks down and laughs at you for being such a pawn to his little dexamethazone induced misconceptions of the world. In a way it’s kind of entertaining and strange.

But for people just finding out they have to undergo chemotherapy, I think the only important thing I can tell them is ; it’s not so bad anymore. That’s all I know, all around the board - no matter what your ailment, it would have been MUCH worse years ago. I have a fairly easy time with it, not because I have a positive attitude but because I went in expecting the worst and came out saying, “Hey… this makes me feel kind of crappy, I’m going to get some sleep”. And that’s about it. Forget the bigger problems like, “I have cancer” and look at the day-to-day stuff you have to do and the tiny problems you experience, Chemotherapy becomes a simple routine like getting a flu shot that makes you feel kind of bad. Personally, I see that as a major upside to the stereotype of vomiting and shitting and being half on this edge of death from the day you start treatment until your final prognosis.

I don’t know a lot about Cancer, aside from what I have - but I get the impression no matter your situation, your life will improve and your drastic situation will become much easier to deal with and manage once you start the routine and know what’s coming up from day to day. I wish I could make it easier for someone who is about to undergo the uncertainty and fear, but I can’t. The best I can do is show you some photos of where I laze around for five hours a day on my solid week of Chemo.

This is me on my bed. You just walk in and pick a bed while they mix up your chemo drugs at the pharmacy. It’s pretty laid back. You can see I have an IV already being covered up by the sleeve ; you just leave with that in your arm and it saves you tonnes of getting poked by needles everyday.

Not wanting to take a picture of anybody in the room, I managed to get a good shot of the beds and layout at the Juravinski Cancer Centre in Hamilton. This is where I’m being treated. Normally these beds aren’t all full, but often there is a few people on each side of the room. This is from the bed I always choose looking off to the left. Once you get there, you actually feel like you’re just putting in a day at the office. You bring some food, a book or watch TV - which they have their… and you just relax, make small talk with the nurses. It’s amazing what becomes normal when you’re really forced into a bad situation, but at the same time, it’s so easy to deal with things that seem normal. The attitude and the one-on-one approach they take at this particular Cancer centre is INCREDIBLY comforting, but comforting in a consistant, “We’re treating you, what do you need, how are you doing? We know who you are, we know you’re going to do well” kind of way. You can’t help but do ‘well’ relative to your situation, otherwise - you wouldn’t be getting treated.

I mean that in a positive way as well, they don’t just drug you up with ‘hope’ you’ll do better, the drugs actually work today. If you can’t be cured then you’re living with a degenerative disease that is much better than many I can think of ; HIV, Multiple Sclerosis, paralysis. There really are worse things in life. Honestly though, it’s not my place to say that. I’ve only considered what could be worse but my prognosis is still very good. In a way I feel very strange talking about Cancer having seen so many people going through so much more because it was caught later, or in a worse spot, or it’s a harder form of cancer to beat.

This is the big scary, “IV” Pump that connects up to your arm. They hang up some saline solution, fill it with anti-emetic drugs (drugs that prevent nausea) plus whatever else you’re on (STEROIDS!) and make sure you’re hydrated properly. Then they hang the chemo drugs and it all goes through the same tube into your arm. I’ve honestly slept through an entire treatment and woke up finished. It’s not so disheartening, in fact, you come to enjoy the loud beeping this pump makes when it’s done it’s injections - because then you know how much longer is left, and you can say to yourself, “I’m down another bag…. 3 more and I’m done the day, 4 more days and I’m done the week”. And get as elaborate with that mathematical focus towards the final treatment as you like.

Posted: May 30th, 2008 under Cancer.
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A play by play explanation

(This article is by Wes Clark, my guy and cancer survivor. This article was written when he was diagnosed a few years ago - after chemo and surgery, he has been cancer free for two years now; I’ve merely cleaned it up for spelling and grammar).

The Cancer I have is Germ Cell Cancer in my mediastinum which is in my chest, behind my breastbone. The tumour was discovered as one large mass although it is actually comprised of multiple tumour types. Any tumour over a certain size (and I’m not sure what that size is) is comprised of multiple forms of the same cancer.

As of now, Sept. 5 2005 - I personally believe the tumour is dead. This type of cancer creates tumours that give off hormones, or what they call ‘Tumour Markers’. They are identical to the hormones released in a woman during pregnancy - so I can accurately say, “I’ve been pregnant”. My boobies didn’t grow though :(.
Those two hormones are referred to as AFP (Alpha Fetal Protein) and hCG. My AFP Levels pre-treatment were 3496 and hCG was 356. Ridiculously high tumour marker levels. I would have tested positive on any pregnancy test. After only one session they dropped to approximately 1000 and 100 respectively. Before Session 3 the hCG was immeasurably low or non-existent and AFP was at 40. Normal for a male is less than 10.

The standard treatment is 4 Sessions of Chemotherapy. Each Session is 3 weeks in total. In week 1, I get 5 hours of injections through an IV for 5 days (Monday to Friday). In Week Two I get a single injection, in week three I get a single injection and an end-of-week x-ray plus full blood tests to track the progress of that Session.

I also get a blood test every Monday. Every Monday I also receive a Bleomycin injection. In the first week everyday I receive Etoposide and Cisplatin (which is platinum). The total amount varies from person to person and is based on the doctors assessment plus their total body surface area. Mine is approximately 2 square meters which is kind of large. I receive Dexamethazone (a steroid) and Granisitron (anti-emetic drug to prevent nausea) everyday I receive Cisplatin and for an additional three days after receiving my last cisplatin injection. That’s a lot of drugs!

I also get severely constipated from the injections so I have a stool softener and ‘Senecal’ - a laxative to take as needed. The Cisplatin attacks fast growing cells in my entire body, so it causes nausea (although I haven’t had nausea with one exception) and can cause diarrhea (which I’ve had) from degrading the intestinal lining. That’s right, it both constipates me and makes me shit liquid.

I was also receiving Stimitil (prochlorperizine), another anti-emetic drug. I had a side effect that I really disliked (lock-jaw) and had experienced no nausea at all - so that drug was discontinued.

Out of all of these drugs, the number of side effects you could experience are phenomenal. Just to give you an idea, Stimitil alone has a list of 16 known side-effects categorized by how common or likely they are to be experienced. Lock Jaw, which I experienced - isn’t listed. Although similar side effects are.

Generally speaking, that is — talking about my own experiences going through chemotherapy verses what you would experience going through chemotherapy on the same drugs and same treatment schedule isn’t going to lay it all out for you. If anything you will have a very different experience depending on:

• The randomness of drug interaction with you personally
• The exact drugs and quantities of drugs you’ll be on
• How well you react to those drugs

Unfortunately Chemotherapy and how exactly it will affect you is a big unknown. The bottom line is a) Germ Cell Cancer is highly treatable compared to other forms of cancer and b) If you’re prepared to experience what I’ve experienced, you’ll be on the right track when instead you experience something slightly different or who knows, maybe you’ll win the lottery and go through my experience to the letter.

Generally speaking I’ve had a ridiculously easy time with Cancer, but here’s a time line of the side-effects I’ve personally experienced:

Session 1:

• Tired at random, but less tired than before beginning Chemo - the Hormones were really fucking with me pre-treatment
• Unbelievable appetite, food tasted incredible
• Horrible taste in my mouth from Cisplatin, I know what platinum tastes like.
• Bleomycin made my phlegm taste like plastic for a couple days after injection
• Constipation - I was constipated before treatment and during. The laxatives really came in handy.
• Slightly Confused after: Bleomycin injections on Monday.
• Lock Jaw: Result of Stimitil. I would be talking and then have to stop, move my jaw around so I could remember how to use it and begin talking again.
• Pain in my ribs - I would wake up with serious pain in my ribs, more than likely not a drug side-effect but a result of the tumour shrinking in my chest. Pain disappeared within 20 seconds
• Tingling in my testicles - Dexamethazone when injected and when I took the pills appeared to cause a really mild version of ‘blue-balls’ lasting for 5 to 10 minutes. Did not always cause this, appeared to occur randomly.
• Hair-Loss: Lost my pubic hair first Sunday after the solid first week of injections. Hair on my head began falling out the following Monday night. Hair left on head was easy to pull out, but felt like bristles in my head when touched.
• Red Face - Dexamethazone caused my face to look red
• Mood Swings - Dexamethazone plus who knows what else caused me to have severe mood swings at random. At first I thought I was mad for valid reasons but later learned to spot when the mood swings were drug induced
• Pressure in my chest - report any pressure in your own chest to your doctor, but with me the tumour shrinking could be felt. It just felt like someone lightly pressing on my breast-bone.
• Sleeplessness from Dexamethazone
• Pimple break-outs that would go away before end of session

Session 2:

• Tired at Random, particularly on Saturday and Sunday the weekend before the end of session
• Unbelievable Appetite, food tasted incredible
• Cisplatin caused gross platinum taste in my mouth
• Bleomycin made my phlegm taste like plastic
• Constipation
• Severe Diarrhea - I was told to take Immodium and the initial dose solved the problem immediately
• Hip Pain: I experienced pain in both hips, symmetrically for one day. It just came on and then disappeared. Had trouble walking, only took an Extra Strength Tylenol to relieve the pain.
• Less frequent and less severe rib pain disappearing quickly
• A Bruise Appeared on my left index finger middle-knuckle. It actually appeared to be two bruises side by side. The bruises turned into a hardened callus. My doctor could not explain it, I don’t remember hurting my hand at all.
• Mood swings became shorter lived - I could get angry or cry but only for 5 to 10 seconds before realizing I wasn’t really angry or sad. Started warning people after a 5 second outburst that I was angry from the drugs and I needed another couple minutes to calm down. This worked well to preserve my relationships.
• Sleeplessness from Dexamethazone
• Severe fever of 39.4 three hours after second Bleomycin injection, two extra strength Tylenol cured the fever

Session 3:

• Confusion after Bleomycin Injections.
• Sleeplessness from Dexamethazone
• Unbelievable appetite
• Bad taste was less severe after Cisplatin and Bleomycin
• Mood Swings from Dexamethasone were very easy to recognize and for the most part were much less frequent. Crying for only a couple seconds at a time was common, but I often cried over things I liked such as ‘little acorns’ by the white stripes or when I heard ‘don’t fear the reaper’.
• Pressure on my chest more severe plus a very strange feeling of ‘bubbling’. An image of a piece of coral rock with bubbles coming out of it and chunks breaking off kept going through my head, over and over the Monday after my solid week of injections. Could not sleep. Really grossed me out - woke up with …
• Pain in my ankles - turned into …
• Severe pain in my knees, plus lighter pain in my elbows, ankles and wrists. Explained to be gout-like-symptoms as a result of tumour break-up. A very good sign, but the worst pain I’ve ever experienced in my life. Had to take Neproxin, Prednasone and Perkocets for a full day and a half. Pain recurred less severe in small amounts at later days.
• Pimple Break-Outs
• Painful Thumb-Nails: For the first time, both my thumb-nails feel bruised like I hit them with a hammer or something. No other fingers hurt - no visible bruises.
• Perkocets [oxycocet]
  • Don’t believe the hype! Perkocets were fun for about two hours, then they made me severely emotional and I felt genuinely depressed while on them and for a full day after I discontinued taking them. I cried a lot. The next day - felt fine.
  • The combination of Perkocets, Prednasone and Neproxin — or maybe just one of them, made me vomit what must have been at least five litres of liquid and chinese food noodles I had been acquiring for the entire day I was on these new anti-gout-like-symptom drugs.
• Severe Tiredness: The weekend before my last week of this session (which is where I am as of writing this)

I hope I didn’t miss any, but this staggering list of side-effects are written by someone that feels they’ve had a really really easy time with Chemotherapy. That’s the truth, almost nothing on this list with the exception of what I’ve endured this session was really even a big distraction to my life. I’ve had the chance to do tonnes of things I couldn’t do working a 9 to 5 and I got to combat the bad taste in my mouth by eating. How awesome is that? Be like the squirrel girl, be like the squirrel.

Posted: May 11th, 2008 under Cancer.
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I didn’t go through the fight. My body wasn’t under attack. But I have felt every blow, every hard step, and every emotional feeling that you could possibly feel along the way. My guy always is saying it must be much harder for me than it is for him, but I really beg to differ.

When he first got on the cancer support chatrooms, he discovered that a lot of significant others/wives/husbands/whatevers leave their partners after finding out that they have cancer. I have to say that this could possibly be the most horrid thing about the human race that I have found out this year. To even imagine leaving someone who is just about to go through the worst experience of their life, unless of course the relationship is dead anyway, has to be the most insensitive shit I have ever heard. I was watching a documentary on Freud the other day and at the end of his life with cancer, he preferred the company of dogs to the company of people. I have to say I agree if people like this even exist!

That being said, it hasn’t been an easy experience. The one thing I took away from Lance Armstrong’s book on his personal battle with testicular cancer is the sentence “Cancer can do one of two things to a relationship. It can bring you closer together, or drive you further apart”. We have often repeated this saying to each other in jest because it just sounds so fromage-ridden. However, it is true that we have grown much closer together (of course Lance Armstrong ditched Kit and started banging Sheryl Crow – I have assured Doug that if he does that to me I will kill him, making all of the cancer-curing a moot point! Violent? Yes.)

We have definitely grown closer together throughout this whole ordeal. Through the dark times when we didn’t know if his tumour was resectable, which would have dramatically increased the odds of his death, I often caught myself wondering what life would be like without him. The answer I kept coming back to was “what life?”. I couldn’t imagine it. I didn’t want to either. I just kept on going with the attitude that we had the best medical professionals possible working on his case, we didn’t live in the US so we weren’t doomed to bankruptcy from the health care bills, and he was happy and taking on the world even through his fight. He just had the best attitude ever. He didn’t stop doing things because of the cancer (although working in and training for a trade was limited by his treatment) and he just lived life to its fullest.

Right now he is in the ICU at St. Joseph’s hospital recovering from the surgery, which did leave him with the loss of his left phrenic nerve, but most importantly ensured the loss of his cancer. Every day he focuses on making his breathing better, and I have told him this is his only priority now. I will handle everything else. Of course, handling everything else has its own stresses, but they are minor when I am faced with the fact that I will be with this man for a long, and healthy life. There will be no funerals until it is really time for them.

How does this affect my work? It has allowed me to put problems in perspective. Unfortunately the stress level has upped my “BS Meter” to the point of no tolerance, but this hasn’t exactly been a bad thing. In fact, I think everyone should develop their “BS Meter” to that lofty height wherever they work – it takes a lot of stress out of every area of your life when you call bullshit when you smell it.

My biggest personal struggle outside of this has been quitting smoking. I enjoyed it casually when drinking or occasionally after work (and I told everyone at work that I quit so they wouldn’t know I was as stupid as I look – I just didn’t need the – you guessed it – bullshit) and of course that immediately ramped up to ½ pack a day level with the stresses of this year. You would think quitting smoking for your boyfriend who will have breathing problems would be a given – try doing it when you are under this much stress. The patch helps, but I have days where I would gladly rip my eyes out of my head as well.

For those of you living with spouses who have cancer, all the advice I can give is just act normal. Go about your lives like you usually would, because this fosters an upbeat and positive attitude that will really help your spouse get through their recovery period. Watch funny movies like “Napoleon Dynamite” and “The Producers” (original Mel Brooks – if your spouse is a guy, he will VERY much appreciate the Olga-go-to-work scene), and anything with Jack Black. Keep the depressing shit out of your life. Cut out the negative people around you and only hang with the people who are upbeat and just as willing to take this just as normally as you. Make crass jokes like “Oh, what, does he have cancer?” when a work colleague calls in sick. Sick humour is really fun right now.

That being said, there are financial problems to consider. Your spouse will be out of steady work for a long time. They need to focus on their treatment and recovery, and working WILL get in the way of that. Most employers will not give a crap that you are having a downer day due to the previous day’s treatment of high dose chemotherapy. Your spouse will be tired a lot of the time and will not be able to handle regular household chores. You will have to take out the garbage, make dinner, do all of the dishes, and be freaking happy about it. The way I look at it, I can crash and burn when this is all over, but while it is going on I have to be there for my guy. That is the most important thing right now and you can never forget it.

Family and friends will help during this time of need. They will cook for you, have you over to their homes for dinner, lend you money (and for everyone who did this, thanks, and you know you will get it back) and generally be there for you. For people like me who have done everything for myself, this is sometimes a little hard to take, but you have to keep in mind that it is only a temporary condition and you will be able to repay these people threefold when you are in a better position.

Our lifestyle change was kind of hard as when we met, we were both making good money, had low living expenses, and could generally do whatever the heck we wanted. Over the last year, our credit ratings and lifestyle have certainly taken a hit, but we know we will be able to get everything back on track in no time. Life is good again, and this whole experience has showed me just how important it is to build up a nest egg and buy insurance.

That is another thing. If you live in Ontario, EI benefits only cover you for so long. After EI runs out, short-term disability kicks in and it can take up to 4 months to apply. There is essentially NO SAFETY NET for long-term disease recovery periods in Ontario. None. My recommendation for everyone who reads this article is run, do not walk, to your nearest possible insurance provider and make sure you get yourself a disability policy that covers recovery periods from long term care. We are currently living on my income alone and while that is feasible, it is hard and would have been made better if we had an insurance policy to cover this sort of thing. Student loans, car payments and so on are not forgiven for these periods and they still need to be paid.

Enough tangents – Doug is cancer free and ready to post his next batch of crazy antics on the internet any day now. I can’t wait to have him home, and I love him with all of my heart.

[Note – this was written 2 years ago when Doug was still in the hospital – he’s been cancer free ever since]

Posted: April 25th, 2008 under Cancer.
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