05 March 2011

A staggering moment of many

What was he thinking? Was he thinking it sucked to be sick again? Was he afraid for his life? Did he think about dying? Upset, shocked, defeated most definitely. Was he worried about his kids? His wife? (In that order?) Did the numbers cross his mind? Numbers like 30%, the pieces of paper that were electric and rent bills, days of life lived, 1 year of marriage, 6 months of remission cross the desktop of his mind in a flash before his eyes? It's no wonder I balled my eyes out listening to "Seasons of Love" at the broadway performance of "Rent" in the city less than a month after his hospital release. It was our first post-hospital date. F-- rights: Measure your life in love.

He was only 23. He turned 24 in the hospital. Following the news we received that one fateful night, we didn't talk much. Dialogue was refrained and minimal for the most part. Maybe because we knew there wasn't much that could be said. Maybe because we were too scared to. It's hard to say, even after all this time. A lot was exchanged through knowing looks and reading body language. For the words that were exchanged, it was tactical communication--make sure arrangements were made and that we knew of our own arrangements. That's all.

After leaving the northern town we hardly had time to attach to, the 8-hour ride a blur, we sat in the hospital admissions waiting area. My father-in-law was there, I think my mother-in-law, and our two children. I was still nursing at the time and wondered when the baby would get hungry while praying that I could keep my toddler occupied. By miracle and by grace, she didn't fuss once. At least I don't remember if she did. I think we waited around 4 hours to get through admissions.

The last time we were there was the prior week, being led through a series of halls and waiting rooms before the critical moment of seeing the doctor. For the first time in a long time, I didn't have my girls under my arms while my mother-in-law held them and we followed the nurse into an exam room. It is a room I will never forget.

There was no point in dramatics, no point in questioning. The look on the doctor's face said it all. I wanted answers. I was thinking about my girls in the waiting room, the maddening inconvenience of it all, my poor husband whose legs were dangling over the exam table, desperately needing to throw blame somewhere. I was feeling an absolute loss of control over every single facet of my life. I felt the swelling of heat and anger rise in my throat, the urge to cry and then to scream because no amount of purging would release the knot in my chest, which I would learn was not to go away for a very long time. I opened my mouth to start the barrage, but something of a feeble muttering fell out instead. I was so surprised to hear how weak my own voice sounded.

Being the daughter of a nurse, I knew a fair share of technical vocabulary, how not to be a pushover, and that it was important to ask questions, but it didn't make a very solid bravado. Words and numbers and procedures blurred together. The doctor had done this before. He delivered each stage without sugarcoating the facts but knew that it was not the time to let his years of having to tell patients and families the same devastating news steel his interior and be removed from compassion.

Consultation. Hmph. That's a word for going to the boutique and getting the girl behind the counter to give you make-up suggestions. That's a word you use when you are building a house and considering a loan. It's a word that suggests advice and a choice to follow or agree to that advice, or not. What we got was not advice. It was a professional, life-threatening ultimatum.

We would take the challenge. We would be a family no matter what. And I would show him that he made the right choice in a wife. I ignored the thought that made me think of the damning, cruel twist of it all--of being married so young, being acosted by life so hard, and wishing to flee. I hunkered down, I found my resolve, choked my tears, and braced myself for war. I would cry later. I had a husband who needed me.

04 March 2011

The third time

Just a short time after the special area groups conference concluded and all the northern province teachers were back in class, the oncologist called. For the first time in our fledgling marriage, we were just getting settled into our first home, a small apartment. My husband's first year teaching school was off to a promising start. Our 18-month-old was adapting to being the older sister, and our baby girl was already displaying personality up the wazoo.

I came into the living room just in time to see his face change. I didn't know who was on the phone. A week had gone by since the conference and also his 6-month checkup. His doctor was in the city down south, but he had gotten his job in the north, so it became prudent to do both at the same time. I waited until he could talk.

I don't remember my exact reaction.

I just remember being angry. I remember crying. I remember there being a swirl, I couldn't get my thoughts together. I think I remember giving him a hug. I wanted to hold him more than anything.

I remember the fallen look on his face, the margin of defeat, as though a thief had just come and robbed him blind and then set his house on fire.

I remember storming back and forth, down the hall to the laundry room, making trips with our clothes, angrier every time I came back through our apartment door. It wasn't fair. I was angry. Hurt somehow. Confused. I tried to push my love through those screens to comfort my husband, give him support, but it was a thwarted, minimal endeavor when I just wanted to scream. I slammed the basket down harder every time I returned, throwing laundry into drawers or on the couch, some folded, some unfolded. Being a fairly health woman my whole life, I surprised myself by getting so worked up I felt major body ache while climbing into bed.

Then came the consultation, for which we had to travel back down south for, confirm the news with the oncologist, see a small presentation about the treatment and procedure they would do on my husband's cancer, and return home only to get hit with the reality that we would not be able to keep our apartment or even sublet it. At all. We had one week.

The treatment was to be in-hospital. Chemotherapies- yes, multiple -were going to be administered via a PICC line (what was that?) An autologus bone marrow transplant. T cells. Blood counts. IVs. Plasma. Visiting procedures. There was much information to take in. In the room where a few rectangle tables were pushed together to form a "U" in front of a television on a rollcart, the air was somber. All my mother-in-law and I could do was look at each other with a number bouncing off our heads: 30%. It was all the doctor could give us for success of cure. It was a number that hung in the air worse than second-hand smoke in a bar. We had a week to come back and get my husband moved into the cancer ward at Health Sciences.

Into people's basements, garages and school staffrooms went our stuff. All of our belongings were thrown into boxes. I could barely think straight. I hadn't even had time to think about post-partum anything, writing a budget for our new lives with new income, or get out of my poutine-eating, cookie-dough-eating slob self before being hurled into a world that meant entire uncertainty. Where would I live with my girls, what were the most important items to bring, what was I supposed to do? What would happen to our belongings? Why did I feel like we were refugees fleeing in fright?

My mother-in-law was not happy with my half-done packing job when she came up north to help us. The friends who ultimately agreed to take us in came to help, too. They also lived down south. After hundreds of trips up and down the stairs with boxes and furniture, a trip to the ER after my husband slipped on the stairs and busted a lamp into his palm, and a scoop of the girls, the place was empty.

28 February 2011

The raw things

So it's like this. No one will hear this. No one will read it. And if they do, they probably wouldn't care. But that's okay. This needs to be told.

When I was 20 years old, I got married. I got married to a man who was a real sweetheart. But he got cancer. I didn't know him for very long before getting married, so him getting diagnosed was a real shock and an even bigger tragedy. I had planned to spend the entire rest of my life getting to know him, having fun exploring the nitty-gritty hardships, and feeling like it was in our power to overcome anything. I had not expected such a hard test so soon, though, that much I can say.

My daughter was 18 months old when we got married. When my husband was my boyfriend, he was so sweet with my daughter, talking with her, playing games with her, and even babysitting her for free when I had to go to work. I had already known a lot of stress in my life by then, having been a single mother who could not afford to pay rent, so finding someone who was caring and loving of both me and my daughter was not only soothing, it was all I needed for proof that surely this man must be the one. She even called him "daddy" before I was ready for it!

He wrote me a poem once, using words like "starry night" and admitted that he loved me and my daughter, because she was an extension of me. Somewhere in the eight months from date number one to our law office vows, he wrote this poem and said a lot of nice things to me, which I'm sure he meant, but those were the only memories we'd have to work from after cancer...

We had already been preparing to move to Canada at the same time we learned his cancer had come back. Yes, he had been sick with it once before, in the July of that eight-month stint we called "dating," but it had been operated on and removed. This time, instead of the remaining testicle, the cancer "metastasized" into his lung.

He was treated, went into remission for a few months, then got it again. Only this time, this very third and awful time, the diagnosis was bad and we had just had our second daughter (for he considered my girl his first.)

It was bad. It was so bad. I can't even tell you how bad it was. So bad that after he went into remission and we got to resume our lives, I cried for months without tears inside my chest. I never tore any boxes down, for fear of settling into our new apartment too much. But funny thing, just when I thought I'd get to tell my story, no one listened, so I just learned to shut up about it.

I learned to shut up about many things. I learned to shut up because I learned no one gave a shit about what you did, they only cared about how things were going in their own lives. So I trained myself to not think about the aunt that took advantage of us while living with her, the constant prison I was in having no immigration status, having no friends nearby, no family, no car, and absolutely fuckall to do or to resource while my husband was in the hospital; because, you see, all those things happened when he was in the hospital, and more. No one knew how much I was suffering because no one called me and I didn't call anyone.

But I was supposed to be strong. No place and no time to be a ninny. I've just kind of always had the sense to know people weren't listening anymore, and I've just about never been surrounded by the kinds of people who would listen. I knew they didn't exist. No one had the capacity to understand how scared I was, how nervous, how sad, angry, trapped, stressed (oh my sweet Lord stressed), lonely, isolated, unforgiven, pressured, forgotten, lost, and stupefied I was. I was just expected to do... what? I don't know. I was expected to do or be something that meant understanding no one in the world would be there for me or come to my aid; and if I wasn't, no one surely told me. I was too overwhelmed to think. I was overwhelmed to a screaming degree ALL. The. Time.

Between Cancer No.1 and Cancer No.2, we got engaged, were in a horrible automobile accident (rollover), got married, went to Nevada for Christmas, found out I was pregnant, and moved to Canada.

Between Cancer No.2 and Cancer No.3, we lived off of his two, minimum-wage jobs in his dad's house, found him a teaching job up north, had our baby, moved 800 kilometers north with a 2-week old infant and two year old toddler, and just barely settled into our shoddy apartment.

The amount of time between our first date and Cancer No.3: 1 year, 8 months

While my husband was in the hospital for No.3, I lived in two places back down south because we had to give up our apartment for his hospitalization. In the first, it was with friends who had grown tired of my presence there and offered to kick me out. In the second, it was with my mother-in-law's brother and wife, who stabbed me with raising my rent every month and tried threatening to get my children taken away, talking to everyone under the sun about it before talking to me. Turns out she was baby crazy and a 'little' mentally unstable, but I didn't know that. All I knew is that she lived in the same city where my husband was laying in hospital and offered to let me and my girls live there. I have forgiven her, but I never talked to her again.

While I was trying to suffer this aunt to remain close to the girls' daddy, I was also at the hospital every day, watching our daily mix of "Northern Exposure," "Three's Company," and "Golden Girls" while making him toast, helping him sit up, watching nurses fix his lines, asking questions, learning about stem cells and T cells, and trying to make his room as un-hospital-like as possible. Also things I did: wake up on the cot in the middle of the night to the sound of him cough-gurgle-puking; accompany him to the lower floors to make sure his pants stayed up in the halls; wash his soiled pants; sponge-bathe; clean his PIC line; hold his hand; bring the girls occassionally; meet his cancer friends; brave the death ward every day for four, very long months; and watch him sleep.

Do you know the color of a person's skin after being chemoed to death? Yellow. Sometimes bluish. Splotchy. Gray. It's the color of life going away. His eyes were so dark and sunken that with the loss of his eyelashes, I could see the whites of his eyes almost all around the whole eye. He looked liked this almost immediately and I was terrified. This was the man I married? What?

Between the house of the aunt and my days at the hospital, my life was hell. How did I get so irreversibly stuck in the bowels of life? I was filled with resentment and desperation more and more each day. Luckily, my girls made me laugh and smile. They kept me going. I had to keep it together for them.

Resuming our lives to some capacity (by which I mean being a family of four in a home and my husband resuming his teaching job,) involved transition of living with his dad for a few months to remain close to the hospital. He was not allowed to be outdoors very long and not allowed to breath or be around freshly cut lawns because asparallagus was a mold that came from cut grass and could get trapped in his freshly chemoed-to-shit lungs. He could not move around too much or he would risk opening the sutures of his freshly removed lung lobe (the upper part, about 20% of his lungs). There was no cuddling.

I waited for him to see that I was right beside him, that we could figure things out, that I stayed beside him the whole time, but he didn't say anything. I was hoping he could tell me before we got back up north how much I meant to him. But he didn't, and I figured it was because he was so ill. Poor guy. I didn't want to be making wifely demands for affection just yet.

I waited some more. I waited for him to look at me in some moment of stillness and quiet and utter grateful, sweet words of appreciation. Words that would melt all of the pain from the whispers off his lips, but I would wait until he was feeling better.

I would be waiting a long time.

One morning, after we did get back north, I was sitting on the floor with my daughters, playing with them, relieved to the point of tears, to be in my own home, with my own things, safe. But the relief was to be short lived, because after the school year started, my husband came home with a pulled groin muscle that actually turned into 5 more years of playing wait-and-see of crumbling, deteriorating bone joints.

Nobody I know understands what it's like to live with and 80-year-old 26-year-old. As the doctors struggled to diagnose and subsequently replace the joints, which were full of dead bone tissue and grinding together bone-against-bone due to the steroids he was given in-hospital, we had to deal with about a million doctor appointments, 1600 kilometers a pop (sometimes by car, mostly, thankfully, by plane), and having to "say good-bye to Daddy" every 3 weeks or so at the airport.

Some people know that. Some don't. But no one has an ever-lovin' clue of what my life consisted of after he was finally confined to a wheel chair in a town where there was no, absolutely none, handicap-friendly buildings; having to take the wheelchair out of the trunk and put it back in to go anywhere plus two small children in carseats; building the muscle to lift the chair with him in it to avoid potholes in parking lots; having to squeeze past people when you just don't want to intrude in busy places, tiny restaurants, church; taking out the trash, chopping the wood, carrying the groceries in, doing the heavy lifting, getting the tots in the house, plus all of the rest of the work women in isolated northern towns do: cooking, cleaning, washing, folding, sorting, checking over school work, putting the children (my precious, precious daughters) to bed, getting them to brush their teeth; and making the occassional batch of actual, real, homemade, from-scratch bread just to make the house smell good.

I just wanted to be appreciated by the man I loved. Before there was the realization that we, too, were crumbling from the inside out, I did more than just talk about loyalty and devotion. I lived it.