Thursday, 9 June 2016

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?

Monday, 16 May 2016

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.

Thursday, 24 September 2015

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.

Wednesday, 27 May 2015

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?

Monday, 23 March 2015

The Lent Diary - Mar 23

Bubbles.

I love bubbles. Admit it, you love bubbles too. I love bubble baths, bubble gum, soap bubbles floating across the sky, tiny bubbles in champagne, the bubbles that cause milk to froth for a latte or a meringue, the bubbles that form on a baby's lips when they discover the tricks they can do with their own spit. Bubbles are kind of awesome.

One of the best bubbles is the bubble of excitement that forms in your chest when you know you're onto something fantastic in your life. The kind of bubble that makes you feel like your heart is jiggling like jello on a spoon held by a giggling child. Like when Indiana Jones realized that his nemesis was digging for the ark of the covenant in the wrong place because his staff was too long.

The most amazing thing about an excitement bubble is the ability to spread the excitement around.

I have that bubble now. And I can't wait to share it with everyone. But good things come to those who wait. So in about a month I'll be able to talk about it. Until then, enjoy the bubbles you have in your life and if you're lucky enough to have a bubble in your chest that jiggles when you laugh, you are truly blessed.

Thursday, 19 March 2015

The Lent Diary - Mar 19

Fear is innate.

There is a certain fear that comes with the survival instinct and another fear that comes in times when all we stand to lose is our reputation.

I recall many years ago (nearly 30 to be exact), I was asleep in a waterbed at a friend's house. In the middle of the night, said friend woke me because she heard a sound. The dog, who was sleeping peacefully beside me woke with a start and began barking at the shadows. Me, I fled. Fight or flight? I fled. I scrambled across the bed to get away from the danger, terrified, afraid for my life. It took me years to find the humour in the fact that you can't easily launch yourself out of a waterbed. I liken it to Fred Flintstone's legs going a mile a minute but his body not moving at all and a xylophone beating out the tune of his feet spinning in mid-air.

It's true that fear is a driving force in most people's lives. We are afraid to say what's on our minds and when we do find the visceral fortitude to speak out, we tend to water down the issue that's been brewing at the back of our minds so it is palatable to those around us, fearful of the judgement to come should it not be well received. Sometimes that fear leads to a better understanding of the issue in our own minds. Other times, it's just a cop out, blaming fear for holding us back.

Last night, I was driving home just after midnight and as I pulled off the 401 and turned onto Montreal Street, a large puff of smoke ran across the road about 100 yards ahead. It stopped part way across and looked right into my headlights and that's when I could see it was a wolf. A very large, grey wolf with a black head, puffy tail and long, white legs. I slowed the car and the wolf dipped his head as if taunting me to charge at him. Then he pushed off with his horse-like legs and disappeared up someone's driveway and into the night.

My heart was racing and the bottoms of my feet tingled. I was ready to bolt from fear for my life, just like the night I tried to leap out of a waterbed. The wolf, on the other hand, seemed not to fear the two tons of vehicle headed his way as much as he feared that I saw him. Out of his element. In the urban jungle rather than the forest where he belonged. He feared me seeing him not as a fearsome predator but as a hungry, garbage-eating critter no different than a rat or raccoon.

I felt the survivalist's fear, he felt the fear of losing face. If only he knew how privileged I felt having seen him at all. And maybe that's what I need to keep in mind the next time I fear speaking my mind, just let yourself be seen at all. Like the wolf, you don't know what people really think of you and it might not be that bad.

Monday, 16 March 2015

The Lent Diary - Mar 16

Menopause sucks.

I don't think anyone would disagree with me. Young people only know the concept and I can't imagine it's a pleasing thought. Men, especially the partners of women going through menopause, would absolutely agree. And we women, well, we know it.

I had become secure in the knowledge that my ovaries had quit and that my poor body had finally done its last turn at trying to get me pregnant. And I was not unhappy with that situation. Months passed where I felt as though I no longer synched with every woman around me. Every 28 days I did a little happy dance because lo and behold I did not have to make a trip to the drug store or clip coupons for an essential item that our government deems "not essential" and therefore taxes up the wazoo.

My wazoo finally had a rest.

That is, until Saturday. Too much information, you say? Well, nobody talks about this. Nobody. My doctor barely talks to me about this. Then again, she's more than 20 years away from having to worry about it herself. This is just a fact of life, like the ones they tried to teach us in "health" class. The thing is, this is a fact women need to know but men don't really need and/or care to know anything about. Unless they need and/or care about the woman/women in their lives.

So, take it from me.

Menopause sucks.