Better Living Through Chemistry

One thing I have had to come to terms with is the fact that pills are keeping me alive. Many people think that I could control my cancer with diet, or herbal medicines or holistic approaches. Take cinnamon every day, or turmeric or epsom salt baths. Smoke weed. Exercise more, meditate, pray. And yes, okay, many of these things do help in certain ways but none of them will cure my cancer. Then someone will throw a story at me about some guy who was dying and then he smokes pot and gets cured. Believe it or not. I choose not to believe any of those miraculous cures. Why? Because those people are not me.

I know myself better than anyone else. Even better than the doctors who claim to know everything about my disease, when in fact, their knowledge is also limited by the cases they have dealt with in the past. I know what works and I don't need to be told by anyone who is not going through this how to better deal with it. Do people think I am not fighting as hard as I can? Those that know me will know that I am reading up on my medications, that I was never a pill taker before (last ditch effort to get rid of headaches) and that if I could I would do everything in my power to not take dozens of pills every day.

But the truth is, I have bone cancer, a very painful and widespread disease that will likely take my life in the next few years. Do I want that? Hell no. I'm trying my best to beat the odds and be around for many many years to come. However, right now, the pills I take are doing what I want them to do, keeping new lesions from forming in my bones, helping to strengthen my very confused and weak immune system, and keeping my spirits up because I am DOING something to actively NOT DIE.

One of the medications I take is a corticosteroid, dexamethasone. I take it once per week. Most people know that you are prescribed this medication to help your immune system to fight off a particularly stubborn illness or infection. It boosts your body to do what it needs to do. In my case, it is being given as a chemotherapy because it prevents myeloma cells from forming. So yes, I will take it.

But guess what, it has side effects. Like all medications, 'dex' is not perfect. Medications are purified chemicals, derived either from natural sources or laboratory-controlled chemical reactions. They are not naturally-produced inside the body so they will not perform the way a substance that is produced by my own body would perform. Even blood products, like immunoglobulins come from other people, so my body says 'foreigner' and tries to get rid of it. Although, some of it works. Enough for the researchers to say, hey this works and therefore keep recommending it as a treatment.

The side effects from dex are a headache that lasts just the first day, a hunger that comes and goes for two or three days, and two sleepless nights requiring a sleeping pill. I don't mind the side effects because I know that the bad cells are also having major headaches. They, I hope are dying so that I may live.

Other meds I take have side effects too but I deal with each one at as it presents itself and I justify them by not fighting against the side effects because that fights against my health. I work with the side effects so I can put the fight where it belongs, against the disease itself. I use all of the tools I've been given, the meds, the doctors, the chemo, the radiation, the positive attitude, the good friends and the support of my family, to fight this disease. So, even on my worst day, when I can barely get out of bed to pee, when food has to brought to me or I don't eat, when nothing tastes right and I have to take extra pain pills, I'm still winning the fight. How can I stay so positive, you may ask? Because I'm still breathing. Maybe not deeply and sometimes laboured, but I'm still breathing. And that's my miraculous cure.

Just Do It!

I'm fascinated with the documentary about Scientology with Leah Remini and it has given me insight into organized religion. Here's my thought: people spend too much time talking and listening to sermons than actually going outside of their comfort zone and DOING something useful. 

Every church is a cult, using guilt or other such negative reinforcement (like threats of spending eternity in hell), as a method of control. Anyone with questions or ideas that don't gel with the church are not welcome. Why? Because they challenge the notion that maybe there is something wrong with the way the church interprets the bible. And yes, it is an interpretation. 

But my biggest revelation is that people know what they are supposed to do in life to honour God. They need only go to church once to get their minds filled with how to be like Jesus. Then they should go out into the world and do it (or not, that's their choice). But to require themselves to continue to go every week to get the same message drilled into their heads week after week? What does that mean? Well, instead of going into the world and helping the poor, the debilitated, the sinful (if you will), they need constant reassurance that they are believing the right thing. Constant reminding of what they need to do to make the world a better place.

Well, I say spend less time quelling your anxiety and go out and be like God. Talk to an addict, go to a prison and pray with a convict, volunteer on a suicide hotline, donate clothes to the homeless, deliver food to children in 3rd world countries, take in a refugee. 

What? That's too much effort? Those things are uncomfortable? 

It's much easier to just spend an hour on a Sunday listening to what you should be doing instead of actually doing it, right? 

Yeah, I thought so.

Sometimes a Gall Stone is Just a Gall Stone

Once a person has been diagnosed with a cancer, any cancer, they live their life in fear of that cancer's return. Or worse, a new cancer that then spawns a new fear of the return of that cancer. I have had the return of my cancer already and believe me, it doesn't feel good. At all. That's because every time cancer returns, it changes your prognosis. You get put in a different category. The category of "maybe it's not under control" and "what will we do about this now". Because doctors really don't like it when your cancer comes back. It means the treatment they thought would cure your disease has not worked. And for the most part, there is no Plan B. So now we treat symptoms as they arise and we look for new cures that might come up as research into this awful disease continues.

Over the Labour Day weekend I had a severe pain in my abdomen that radiated through my left rib cage and around to my back. It was so severe that I couldn't settle down. I stood, paced, sat, lay down, stood up, paced and repeated. I took extra pain meds. Nothing worked. So off to the Emergency Room we went at six o'clock at night. All that went through my mind was, this is it. This is the day I find out that the cancer has overtaken me and it's game over. Every cancer survivor thinks this, I have no doubt. Every little pain, discomfort, pimple, palpitation, cramp, or otherwise, has us thinking that the big "C" has finally done its nasty turn and made us it's bitch.

At the hospital, the doctors and nurses wander around me with faces that say the end is near. I know I'm exaggerating but there really is a look in their eyes when you tell them you have an active cancer going on. It's hard to explain but it's like waiting for the other shoe to drop. They do bloodwork, take X-rays and watch as the colour returns to my face and my lips go from purple spots to pink and healthy (relatively) looking. No heart attack, they said (not that I was even thinking about my heart). No pulmonary embolism, they said. The pain was beginning to subside. Well, it could have been from the intravenous pain meds they gave me. But then they had to transfer me to another hospital for more tests. They decided that it could be a gall stone. WHAT???? Did I hear that right? I had been worrying and fretting over cancer and they declare my anxiety a non-entity. I was happy in a twisted sort of way, even though I had to stay in the hospital for two nights while they made sure my system cleared out the poisons from the passing of that nasty little stone.

No new cancer. Whew. Big whew. Sometimes a gall stone is just a gall stone.

The Recovery Curve

It is nearly two months since my stem cell transplant for multiple myeloma. I'm supposed to be recovering which, according to the doctors, should take roughly three months to regain a fully functional immune system and six months to a year to feel like 'my old self'. So how do I spend my days when the thing I'm supposed to be doing is 'recovering'? Therein lays the crux.

I'm mathematically inclined, as anyone who knows me well will tell you. I think linearly, I like numbers, I'm not half bad at Sudoku, and I can still remember equations that I memorized in high school. So, it's no wonder that I think of my recovery in terms of a dose response curve. It rises sharply then levels out then trails off slightly. Right now I expect I am on the sharply rising beginning of the curve, heading toward a levelling off, meaning that I expect to get a little better every day until I get to a point where I simply can't get any better. My physical limitations, dictated by my disease, will not let my curve rise any longer. It would be a great analogy of a recovery if it were true.

The problem is that I have setbacks on a semi-regular basis. Like today. I've been doing so well, going out with my family, friends, my partner. Getting groceries, making dinner, sweeping the floor. Doing simple tasks that anyone can do in their sleep. Today my pain caught up with me and laid me out in lavender.

I took my pills an hour early, at around 7:30pm because I was starting to feel the pain in my back getting intense. When that happens, I end up tensing up so the muscles around the broken vertebrae get sore too. I was sitting in my comfy chair in the living room and I couldn't get comfortable. So much for my comfy chair. Richard brought me my pills and I took them. They didn't kick in as fast as usual so we went upstairs so he could rub some Voltaren on my back. His warm hand felt good but he couldn't press at all without triggering spasms of pain. I rocked in the bed. I laid down. I sat up. I paced. I rocked. And I laid down again. Then I cried. There was nothing else to do.

Yes, my back hurt. But my ribs hurt too. They all felt broken. I took another breakthrough pill. Then I paced again. For some unexplainable reason, I wanted my pillow case changed. I became focussed on the fact that the pillowcase smelled stale and the only thing that would make me feel better was a fresh pillowcase. So Richard got one and again for no reason in particular, it felt better to have a clean pillowcase. I sat up, swung my legs over the edge of the bed and started to rock. I breathed deeply. The pain eased. I wanted to shout hurray. Within two minutes, I went from writhing in agony to being able to sit up with no pain. 

Where the heck am I on the curve now?

What they don't tell you about cancer.

There are several things they don't tell you about when you get/fight/beat/recover from cancer. For instance, chemotherapy wreaks havoc on your....wait for it....bowels. Yes, you will have diarrhea and constipation, sometimes on alternating days. Just when you think you need an extra stool softener you'll find yourself reaching for the Immodium. There may even be times when you will need Depends, just in case you pee yourself standing up. If your stomach muscles tense up even just a little, that good old sphincter that keeps in the pee will let loose. It's embarassing and can lead to extra loads of laundry. Believe me, you do not want to let your delicates sit for any length of time while still...er....damp. There's always the nausea, which the doctors have piles of medication to curb it with but that's really one of the more obvious side effects. These are the logical aspects of cancer given that chemotherapy does a number on your entire body. But there are a few other side effects that took me by surprise.

For starters, my skin became so sensitive. No matter where you touched me or how gently, the feeling was like a deep tissue massage. You know, the kind where you just want the masseuse to stop before you start crying from the pain. I would get a pedicure (something I felt helped me feel better about myself as well as a way to keep my feet clean and healthy) and when it came time for moisturizer to be rubbed into my calf muscles, I would just about hit the roof. And yet, the dry skin required moisturizer regularly just so it didn't look like my skin was falling off like a snake's. It was more than just the delicate touch that bothered me. My cats would regularly walk up my body and settle into my lap or on my stomach. But after treatment, those little kitty toes felt like I was being jabbed by a pool cue. Or worse, it reminded me of when I was about 6 years old and my grandfather, who was known as a man who didn't much like children, was visiting. Apparently I was talking too much, I tended to do that, and he said children should be seen and not heard while he jabbed his walking cane into my ribs.

My particular cancer affords me a few other side-effects such as a broken back, blood clots and the notion that I will never be cured and will have to live with this nasty disease for the rest of my shortened life. But there is one that really puzzled me.

That one side effect, the one that surprised me most, was when I realized I had cradle cap. That's right folks, cradle cap, like a baby. The thing about losing your hair is that for a while your head is soft and the hair wears off on your pillow slip (a lot of people suggest you get a silk pillow slip to avoid this shedding) but before the hair follicles are healed enough to grow actual hairs, your scalp goes through some changes. Mine developed a few sores, which ended up creating small patches of acute dryness. Now this became larger patches of dryness, which made my head start to snow. Not a full on blizzard, just some flurries now and then. Other cancer patients, having experienced the same issue, came up with home made remedies, rubbing almond oil on your scalp for two hours, soaking your head in peroxide, regular scalp massages to aid in blood flow, etc. The one that made sense to me was rubbing vitamin E cream on my scalp daily so that's what I did. Or what I have started to do. I'll let you know how it goes.

I don't expect that doctors will tell you everything about having cancer, that would take too long. But if you've read this blog you'll know that there is certainly more to it than nausea and piles of medication. You really do start your life over. Like a baby. With new hair, delicate skin, diapers and an inability to predict the consistency of your stool. Oh and the puking, which leads to eating things that are easy on your stomach like yogurt and Arrowroot cookies.

I guess the moral of the story is, when you get/fight/beat/recover from the nastiest disease you will probably ever have the misfortune of having, you will also have many side effects that make you laugh and cry. Having no hair makes me laugh. Cradle cap makes me cry.

This is what radiation therapy is all about.

They put you on a table like a fish about to be gutted on a narrow cutting board. There is no room for your arms so  they hang down, fins that don't fit nor have any purpose. Your head slips into a plastic form and they smooth your hair down, if you have any, so it doesn't get caught when they strap down your face. Your personalized plastic face frame is lowered down until every millimetre slides into place over your eyes, nose, cheeks and chin. 

You can't move. You can speak but only just enough to issue grunts of agreement, perhaps a barely understood word or two. 

'Are you comfortable?' 

'Mm hm'. 

'We're going to get started.'

'Okay'.

That means they are going to leave the room after they take their measurements. You've been tattooed with small dots that map benchmarks for the machine to be lined up over your body. One between the breasts, one anterior to the umbilicus, one on each hip marking the edge of each ilium. These are the marks that the giant machine will use to locate the areas requiring radiation.

The people leave, the patient remains, the machine begins to move. First it takes an x-ray, confirming the body's position. Then it moves into place for the first treatment, a low metallic drum beats as it stops and focuses on the target area. A hum and then a high pitched squeal as the radiation is released.

In her head she plays video games. Space Invaders, the aliens are cancer cells, the little ship is the radiation and it is taking shots at the cancer, killing some, maiming others but always destroying. 

The machine stops and the people return. They remove the mask and she can breathe easier, instead of through a mesh fog. They take more measurements and leave again. Treatment number  two in another area of the spine.

This time she plays Asteroids. Shooting more cancer cells, causing widespread destruction. They shatter into pieces and she grins as they die. Die cancer, die.

One more visit from the people, the patient remains still. Her arms are tired but they have put a strap over them to keep them secure or they would fall off the table and interfere with the movement of the machine. She opens her eyes as the people measure and she notices that she is up high, at least four and a half feet off the ground. The shortest nurse's chin barely clears the cutting board. She would never be able to gut a fish at this height.

The people leave and treatment number three begins. The radiation beam cuts a delicate path around the spinal cord. No margin for error here.

The woman decides to imagine something different. She fires a phaser at the cancer cells clinging to her bones and they dissolve with a blood-curdling scream. It feels good to kill. She launches hand grenades into the spaces the cancer has left in her and the explosions demolish every cancer cell inside the lytic lesions left behind by the cancer's digestive actions.

Suddenly it is over. The table lowers and the people return. She is human again. The only dissection performed was necessary and has left the host alive. But the cancer is dead and more cells will die as the radiation continues to interrupt their ability to reproduce. She is lifted from the table with slow, strong arms, the nurses are happy with their work. She is put  back together, no horses or King's men required, her hair put back into a pony tail,  her neck brace back on as a choking reminder that she is diseased, her clothes in place, glasses on face rather than a mask. No more mask, this is her own face.

And it is smiling.

Are you talkin' to me?

I've come across my share of rude people. I have held jobs in the service industry, albeit mostly in my youth, but it wasn't until recently that I realized just how much rudeness the average customer service worker must endure.

Last September I took a job, I'd go so far as to say my dream job, that requires some but not much face to face customer service. I do backup reception and happily deal with professors who are dropping off or picking up exams. Mostly I work with representatives from each academic unit, who in turn deal with the end user (faculty member or student) in their respective units. This is my full-time job and I love it. I pore over data on a computer half the time and for chunks of time I am hands on with mountains of paper. Again, I love it. Few people. Just numbers.

However, I also have a part-time job where service probably tops the list of what I deliver to the customer. Sure, they are renting a room for the night and I make sure they get what they need but my interaction with them should leave them feeling good about their decision to choose our hotel.

Most people are nice, many are dog tired from travelling and a few are downright grumpy. All of those I can handle and even justify. Hell, I've been tired and grumpy after driving for hours too and all I want is a clean hotel room with a soft bed so maybe I've been a bit short with the front desk staff myself. Now that I'm on the receiving end, I realize there's a lot I can take from customers like these. They are really good people at heart, I'm just catching them in a difficult moment in their lives. The bulk of travellers in the summer are on vacation so they are in a whole different league of happy (sometimes drunk) but are just as easy to understand and deal with as the tired traveller.

Now let's get to the heart of the matter. The asshole. There are a few and boy do they enjoy making a customer service worker earn their minimum wage. Every last living penny of it.

As a customer service agent, I realize that I must set aside my personal pet peeves so the fact that someone "forgets" to thank me for something I've gone the extra mile to provide bugs me but I let it go. I let a lot of things go. Assholes go the extra mile too and they let nothing go. They do things like peeing on a vehicle in the parking lot because they are too drunk to make it back to their room. Or blocking open a fire exit door to have a smoke outside because they don't want to go back to their room and get their key. Or using that slimeball charm on me to see if they can get more than they deserve. Slimeball charm has never worked on me. So when I ask someone to please let me do my job, the greasy grin on their face often disappears and the real asshole emerges. They get downright nasty. But I know my rights and I can smile all the while I'm telling them what's right and wrong.

Yesterday I found myself dealing with a professor who sounded a lot like the truck-peeing asshole I deal with at the hotel. And I found myself smiling and giving him a kind, respectful explanation of what I was able to do to assist him. He hung up the phone satisfied that he had put me in my place and I hung up the phone thinking exactly the same thing. He expected that since he wasn't getting his way, the minion must be incompetent. I explained to him my workload, priorities and that his request would be dealt with in as swift a manner as I was capable of...and he was welcome to contact my manager if he was unsatisfied with my answer. Of course, putting a manager between us often quells the storm of dissatisfaction. As long as they've been heard and feel they might have sped up the process by calling me, then all is well. After I hung up the phone, I went straight to the pile of paperwork that contained his "request" and swiftly moved it to the bottom of the pile, which is too bad because it was really really close to the top. But of course, now that I've had to take such a long phone call, I need to re-sort my priorities.

Oh and one last thought. The customer is NOT always right. In fact, the customer seldom understands the rules or is informed about the rules or has had the rules applied to them in the past so I have no problem explaining to them how things are going to be. And thanks to the assholes of this world, there are rules rules and more rules to follow. And I can always re-sort my priorities according to the rudeness level I'm forced to put up with.

Because if everyone was kind and respectful of one another we wouldn't need rules, would we?