leuk arrives

We were in Vancouver, staying with Damian and Steph. I was desperate to find a dog. I'd been searching the SPCA sites looking for that perfect mutt... but they're weren't any. I turned to the classifieds, fell in love with the idea of a basset hound. Long ears check. They looked dopey and slow, droopy eyes, probably couldn't walk far. I was definitely searching for low energy. I found a few puppies left from a recent litter... Sure, I thought, drive out to the trailer park in Surrey, it's just near the border - that'll fit into our day of medical apppointments just fine. It was out of the question. I actually cried in frustration patially because medical appointments again ruled our life and partially because no one seemed to understand that I really did love the idea of a basset. He can't jump, he can't swim, he can't get in and out of cars... and they showed me videos to prove it. hmmm... maybe they were right, but in the moment I didn't like them very much for it.

Time for the back-up plan. Maybe a golden retriever? And so, I found one that very day, in Nanaimo nonetheless. The last of the litter, unclaimed by the family that thought they would take him home. I emailed and the they told me another family was taking him. I could call after 6:00 to make sure he was gone. I hate the phone, but I called anyway. "They decided to go to Disneyland instead" she said. What's wrong with this dog I thought. "Oh, um... we were on our way back to Nanaimo, on the ferry.... Can we come and see him?" I asked. "We really are interested." I'd only seen one picture, the little guy looked like a ball of fluff. In the picture he was trying to break into a milk bones canister. He's not going to be trouble at all. "We can go stright from the ferry be there at 8?" She asked if we wanted to go home instead... "taking a ferry makes for a long day". She's right. David looked tired. Making a dog decision after a long day probably wasn't a good idea. It killed me but I agreed on 6:00 the next day. I was skeptical. What if someone took him? I confirmed by email. 'We are really interested', I repeated. I pretty much stared at the picture all day, looked for other puppies in the area. There weren't any. This was going to be our chance. I tried to be nonchalant with David. "We're just going to look" (yeah right). "We won't make a decision tonight." "We're not going to take him if the environment is not clean or if we get a bad feeling."

We arrived. right on time. There were kids playing outside. The house and yard were clean. She had a golden retreiver statue on the landing outside the door. She appeared to like dogs. Seemed like a good start. We were led through a series of halls in the basement to the downstairs kitchen, and three bouncy wiggling puppies were released. All rolling around and playful and cute as anything I had ever seen before. "Which one?" I ask. "The big one is the only one left. It's a male." I tried hard to think of additional intelligent questions to ask. But I had nothing. I might have asked about the parents, about food, about exercise but the answers may have well have been in greek - I wasn't listening. My eyes darted between the puppy and David. I wanted to know what David thought. I caught his eye... "Do you want him?" "Yeah, do you?" "Yeah." No decisions (yeah right). He was going to be ours. It may have been the best moment of the year, maybe my life... We rushed to the nearest bank machine and were back within minutes. Trade. Money for puppy. As I carried him out of the house I wondered where to put him in the truck. Behind the seat? in the back? My lap seemed as good a place as any. The tiny bundle of fur settling in, making himself comfortable, as we barreled down the road towards home. I was in love. "What should we call him?" I asked. The response. "Leuk." There was no debate, no other option presented. Leuk it was. Bringer of light, we've needed you.

Of course the intial excitement wore off pretty quickly as the reality set in. This little dude was a lot of work, he ate everything (still does) wasn't house trained, chased the cat (still does), ate the drywall, our shoes and bit everything with his sharp little dagger teeth. For weeks I was setting my alarm for every two hours to get up with him in the night. Funny though, it was cool and crisp and the sky was clear for those two weeks. Unusual for December. I secretly loved those moments standing outside looking at the stars watching the moon creep across the sky in two hour lime laspe. I had him housebroken, all but a few accidents, in about two weeks. I only stepped in shit on the floor in the bedroom once. I learned my lesson. Puppy whines. Let him out, don't roll over and bury your head in the pillow. We made it through his baby teeth with the furniture intact, and the little mutt became our constant companion. We quickly slipped into a comfortable routine, I'd leave for work in the morning, the cat and dog siezing the opportunity to occupy my spot in the bed. The three of them dozing the morning away, getting up slowly, drinking coffee and playing on the computer, an occasional excusion, a car ride to the store. Our happy little family. 

the elephant

There's an elephant in the room. I'm not really sure how it got there. As far as I can tell the walls are intact, there is no evidence of how he may have gained entrance to our house, or more specifically, the 'living' room. Nonetheless, there he is lounging in the corner, staring at us, big sad elephant eyes and that trunk always searching for a peanut that may have strayed under the couch or somewhere just out of his reach. He's made it clear that he's never leaving. For awhile I tried to just ignore him, but he's big, and he demands time and space.

His name is Leukemia. He's part of our lives. And now, after some initial resistance, mainly on my part, he goes everywhere with us. You see our dear Leukemia never thought twice about entering our life, and from that day he arrived unanounced in the living room, he never even attempted to leave. He didn't try to squeeze out the window, didn't knock out a wall in a mad attempt to break free. I on the other hand, did everything to try and get him to budge. I tried to lure him outside with his favorite, a big chunk of cheese, but he was dedicated to staying. I even tried to hide him in the corner, cover him in a big sheet and pretend he was some weird art project or statue to be revelaed during some special event at a later date. I even tried to get mad at him but no one wants to yell at an elephant. Those eyes just look sadder and sadder and that's not fun.

So in the end I decided to accept him, treat him with respect. Give him attention even, as long as, eventually he would leave in the night just as silently as he arrived. And the life we had before would return. I took the blink of his eyes as a sign of agreement. And so now we live with an elephant.

Actually, it's not so bad for me. The crafty beast has an uncanny ability to seperate his shadow from himself. I get the shadow following me around. David unfortunately gets the full elephant. It's funny to look behind you and see an elephant's shadow trodding along behind. I usually only have to take a quick glance back to see him, or rather, his shadow, lurking in the shadows, just out of sight, slowly sneaking up behind me to better hear a conversation or see what I am doing. This may be a bit creepy a big looming shadowy thing slinking along behind you, or me rather. But I can assure you it's not. He even comes in handy sometimes, an excuse for a shy me to escape from a conversation. Oh, I have to go, the elephant needs attention. He's kind of like a kid, full of spirit and energy and he just can't help following me. It's what he does.

Of course David doesn't have it so easy. Leukemia is all his flesh and bone is the big ball at the end of a somewhat imaginary chain that had been fused permanently to David's leg, correction, to David's soul and being.

Imagine going to the store. It's such an ordeal. It goes something like this:

David: Do you want to go to the store?
Cindy: Sure, do we have to bring Leukemia?
David: Yeah, he's tired today though.
Cindy: That's ok, I'll get the peanuts, you get your shoes on and I'll coax him to the door.

David opens the door, and, as it happens Leukemia bounds out and we have to chase him around calling his name trying to get him back under control.

David: You got him?
Cindy: Yeah I got him.
David: Don't let him go.
Cindy: Don't worry, he's not going anywhere. Get the back of the car open, I'll shove him in.

And away we go smashed into a car that clearly should not be transporting and elephant. David and I in the front with our seats arranged as far forward as possible to give our elephant just a few extra inches of space. Leukemia, oblivious to our efforts to make him more comfortable, extendeds his trunk out the back window, the speed of the car creating a breeze that causes this rediculous appendage to flap in the wind as we speed down the highway.

And so we continue this way accepting the beast into our lives. And now that I've finally stopped resisiting his exisitance, life has become easier. At least for now, while he's behaving. In fact, I can't imagine a day without him, although I do enjoy the days that he spends snoozing in the corner or looking out the window, occupying as little space as possible. Not that I can say I'm in love with the idea of him, or ever will be. But in the meantime I've decided to accept, and if possible, enjoy. After all, how many people get to live with an elephant?

*update*



Leuk and the elephant



On december 4th we brought home a wiggling ball of fur and clumsiness. He does really live in our living room, and digs holes in the back yard. He makes us laugh and sing and dance in the kitchen. He is named after 'the elephant'. His name is Leuk. And as dark and big and heavy and Leukemia is, Leuk is the opposite. Leuk and Leukemia have become good friends. And we're ok with that. In fact, this makes me smile. I watch them tear around the house chasing each other, falling over each other, pretnding to hate each other, then later curling up on the couch together and I realize life goes on, and that we're all just doing the best that we can with what we have.

Interestingly, soon after Leuk arrived he received three gifts. All were stuffed, two squeaked, one had a red hat... all were elephants. The bearers of the gifts did not know of our live-in elephant. So, I have to wonder... is there relevance to this coincidence? I'll leave that to you to decide.

*update* we're home!

Hi everyone,

It's been a few months since my last update... In this case, no news is good news. David's doing well... and to our surprise - we're home! It's been a whirlwind and it's taken us some time to figure out which way is up - but we're getting there. David's getting stronger slowly. Results from recent blood, bone marrow biopsies and CT scans indicate that things are progressing in the right direction. A new (to us) young doctor was assigned David's case in early October and he was dedicated to getting us home... He pulled David's hickman line (IV to heart) loaded him up with prescriptions, arranged for bloodwork to be done in Nanaimo... so here we are. Living in our own house. What a concept.

As for the future... well... we're in search of a more 'normal' life, and feel we're getting closer. Assuming David remains stable, he'll return to Vancouver monthly for specialist appointments, but weekly blood work will be done in Nanaimo to make sure all is well. David still has a long road ahead - he's got a drug store selection of meds to take every day and the docs are keeping him immunosupressed to prevent rejection of his new immune system. His plans - lots of hanging out at home (no renos though - dust bad). I, on the other hand, am going back to work finally.

I know many of you have written to us recently... we're sorry for not getting back to you sooner. We love you and thank you for continuing to send us good wishes. Arriving home was a little tougher than expected - I think we both needed some time to process everything that's happened in the last 9 months - how is it that it could be November again? Anyway, we're looking forward to seeing and talking to you all soon.

All the best, with love,

Cindy and David (and our cat Mins - who is home with us too!)

*update* the ride continues

Hi boys and girls,

Sorry for the gap in updates. David and I took a 'vacation' from email. Back now.



Spider killing outfit.



So, long time no update... I wish I could say we were home and having fun... but not yet. David's dealing with a few complications so we're still living in Vancouver full-time. The complexities of the bone marrow tranplant and medication side effects are overwhelming, to say the least. We did go home for one night a few weeks ago but were called back to the hospital the next day due to a virus they picked up in this bloodwork. He's fighting hard, we're staying positive, but it's a slow road. The meds for the virus are affecting his new immune system so he's very low energy and immunosuppressed these days. Car rides are about as much activity as he can take - and even that's a stretch some days. I thought we were going to be allowed off the roller coaster for awhile but the ride continues. I'm getting dizzy.

On a positive note, we did have a great day at home when we were there. David relaxed and played on the computer and listened to music, and I tackled all jobs realted to dirt or dust. David's banned from lawn mowing for awhile (all vegetation, dirt and dust is off limits) so I tackled (tentatively at first) the fields of dandelions... by the end of the task I vowed to replace at least the hilly parts of the lawn with non mowables by next summer so that I can take the extreme out of lawn mowing. I always wondered why it took so long for David to mow the lawn... The garage got a bit more organized, and I managed to kill some monster spider beasts with a baseball bat which was a huge accomplishment (for me). I've also become a barber and a dressing change nurse and am working on becoming a low-fat-low-carb chef. Some of my skills could use improvement - but its a start.

We're staying pretty local these days and keeping to ourselves so that David can 'conserve energy' and protect his immune system. I know we haven't visited with many of you for awhile, but you're all close to our hearts.

Love,

Cindy (and David)

*update* going as planned





David, face scarred from GVHD.


Hi Everyone,

David tells me to tell you all that everything is going as planned :)

Ok, but really, it's been a bit of a challenge. The mucositis cleared up and now David's been hit by graft versus host disease. I`m not going to pretend that I really know what this means, and I`m not going to get into the unpleasant details but the best way to describe it is that everything in his body wants out. He lost 4 kg in liquid waste over past few days. They did start him on steriods yesterday with some improvement today, but one day at a time, we can`t speculate what tomorrow`s going to bring.

The bonus in all this is that David was moved to a private room. Better view, better light, more room - quieter. If you used to call him at his old extension number - he won`t be there. New extension at VGH is 60645 - but it's not hooked up yet. Maybe tomorrow? Or whenever the phone guy makes his rounds.

New room has sunset views over Kits and English Bay. I like much better.

Talk to you all soon,

Cindy





View from the 15th Floor.



*update* mucositis continues

Hi folks,

Not much to report - been much of the same for the last week or so. David is still battling severe mucositis - apparently similar to trying to swallow rasor blade shards. He's started to see a small improvement over the last few days and was even able to swallow a bit of jello for lunch yesterday, of course now he's suffering for the effort. He's dropped the morphine level down slightly as well and is starting to spend a bit more time awake during the day and asleep at night. He's still very tired though - not very interactive. Still continuing with blood and platlet tranfusions, as needed, almost daily. Had some unusual liver numbers pop up, but the doctors seem to have things under control - I think they switched a bunch of meds, but it's hard to keep track. Highlight of the week - we had lots of fun watching the first disc of the newest season of Weeds a few nights ago.

More to follow - when there's more to report.

Love, Cindy

david cries

When I walked into the hospital this morning there were 7 lines running into David and they added 2 more throughout the day. He looked like he was attached to a Christmas tree by the time I left. Anti-nausea, anti-rejection, immune suppression, TPN lipids, TPN proteins, a blood thinner, morphine and fluids were pumped into him all day. And at night anti-fungal, anti-biotics were added to the mix. All this goes in, nothing comes out, except, today, a whole lot of mucous, but not enough to balance, so they add lasics to draw it back out of his cells and into his bladder. On the other side of the bed suction tubes ran into a big bucket so that he could suck the saliva out of his mouth to avoid swallowing and tearing his throat into a further pulp. Mucositis hit him hard today. And at 8 when Evelyn started her shift he cried. I think in relief that she was going to take care of him, make him feel better, even if she could be a little cold, a little tough. She was the best.

I’m home now and I need to eat. My cinnamon bun of 12 hours ago seems far away, and the scone of 6 hours ago seems just as distant. The microwave beeped about 4 minutes ago. I need to eat.

tired of being sick, sick of being tired

I left the hospital at 10 to 10. The mere effort of standing caused shots of electricity through my head. My head ached and it felt like the glands in my throat were going to follow close behind. "I’m going home. I need one more night of good sleep. I’ll sleep here soon. I need to feel better." David nodded in agreement. I felt guilty – I wanted to stay – I wanted to just be near him for a night. But I couldn’t risk getting sicker again. I was just on the tail end of a bout with strep throat and still wasn’t 100 percent. I remember having step when I was a kid a bunch of times. I was maybe 15, 16. I would sleep for weeks, eat almost nothing and avoid orange juice (one of my teenage staples) for about a month. I figured I must be more invincible now, but less than a week after it started I was still feeling rough.

I headed toward the visitor elevators on my way out, knowing that there wouldn’t be anyone using them at this hour. The service elevators, my normal route, would be slower. I got on trying to be a visitor, or trying to look like one. But it never worked. For some reason I was easily mistaken for a hospital worker. Maybe the backpack stuffed full of my daily necessities gave it away. They probably think I have work clothes and lunch packed away. I often got questioned in the elevator. Mostly directions. "What floor is the exit? Where’s the cafeteria? How do I get to Broadway? I need to find emergency." I was always polite with my answers. And when questioned, do I work here? My answer. Always. "No." Without elaboration. On a particularly bad morning one day I was on my way back from Tim Hortons and the fellow beside me, balancing one coffee on top of another, waiting for the light to change so we could cross Broadway asked if I was headed to the hospital. "Yes." "Oh, me too." And then he launched into his story. "My son was in an accident, he’s being released today. I’m bringing him a coffee." And so on. He paused at some point, glanced at me and slowed his pace. "Do you work in the hospital?" Standard answer. "No." "Oh, visiting?" "Yes. My husband has leukemia." I’m not sure if it was my tone, or the shock of my answer, but that shut him up. He scurried away moments later wishing me luck.

As I walked to my car in the timid night air I thought about the update email I had written earlier. I hadn’t wanted to send it. I knew my tone wasn’t quite right. A bit sadder, a little more defeated this week. I cringed at the number of people that would forward it around at work tomorrow morning. I always tried to be as nonchalant as I could, add a bit of humor here and there. Some personal info, but not too much. I didn’t like the idea of people knowing me through my writing, and, maybe more concerning, my tragedy. But I knew it was needed, appreciated even maybe. It was human nature. Curiosity, I mean, and to care, most people care. Like when you crane you neck to see if the people in the car accident are all right. It’s ok to wonder, to gawk, otherwise… Are you really human? Or completely disconnected? So the update emails continue. I just try not to think about all the strangers reading them and hope that when I see them again, or meet them for the first time that they won’t pretend to know me. Also, I hope they keep all their stories about their aunts, cousins, friends that battled cancer to themselves. I know you think you know, or want to pretend you know how it feels but every situation is different, and it’s not like I don’t care. But do you know how many people have told me their stories in an effort to relate? I usually listen politely, they don’t know how big time this cancer were dealing with is. And honestly, I’m glad they don’t have a clue.

*update* day 11 post transplant

Hi guys,

Day 11 now. Just waiting for the last dose of methyl trexate immune suppressant. Although we were hoping to avoid it - David has been hit hard by mucositis (expected side effect). He was put on IV TPN (total parenteral nutrition) yesterday because he can't swallow anything. He's also on a morphine pump to reduce the pain in his throat and mouth. He's not talking much, and very tired from being up during the night with pain. He's also disappointed that there's no tennis on TV - I think he's had golf overdose.

I've attached a picture of his tree of life, which has grown considerably in the last week. In the picutre he's getting a blood transfusion, lipids, protein, anti-rejection, morphine, anti-nausea, a blood thinner and fluid. All this flows into his central lines through the blue pumps that regulate the flow.

I'm finally back at the hospital after a week on my own with the couch. My strep throat is clearing up with the help of antibiotics. Other than being tired, I'm finally recovering and feeling better.

That's it for now. It's been a long week.

Cindy 

how is life at home?

How is life at home? An innocent question sent by email. I spared them my answer saving it in the drafts rather than sending it at 4 am. I rewrote something more polite the next day... here's what I wanted to say:

How’s life at home? ... Lonely. I’m scared. I miss seeing David. Over the phone I hear him getting sicker and it’s killing me. The closer we get to day 14 the more terrified I am. I think about home all the time but it feels so far away, so distant, so forgotten. I’m tired of talking to people, tired of emailing people, and of tired of trying to sound positive and strong. I feel broken, lost. I don’t feel like going swimming or for a walk or for lunch with anyone there’s something too forced about it. I’m so fucking tired of being fake. I’ll know I'll feel better in the morning, the nights are just so long.

*update* day 5 post transplant

Hi everyone,

Things are going as well as can be expected so far. David has had two of the four doses of anti-rejection chemotherapy drugs without too many side effects. He has developed a mystery rash, but it's not getting better or worse, so we're hoping it will just start to get better soon. He's been able to eat a bit, primarily eggo waffles and maple syrup. A good staple. We may try to add kraft dinner onto the list as well. His food prefernces are similar to a seven year olds these days, but the doctors tell us that's ok and that he needs to get as much in as possible, even if it's just a bite or two. Vegetables and whole grains, um no. His [white blood] count is at almost zero now which means he's got virtually no immune system (desired effect of the chemo and radiation). Actually, all his counts are dropping and as a result he had a hemoglobin transfusion on Friday to boost him up a bit for the weekend.

Other interesting news, I, finally, after 5 months, have a cold, which means no hospital for me. This afternoon I dropped off a supply of food and gave David a wave from across the hospital room before retreating back to the couch. I feel like I could sleep for days, but I'm really hoping to be back at the hospital tomorrow.

Lots of love,

Cindy

not my life

I woke up with the immediate thought that a piece of me was missing. When I opened my eyes and looked around at the unfamiliar surroundings I had recently adopted as my mine, I realized why. This was not my life. This was not what I had planned. I closed my eyes forced myself to fall back into the covers, to hide, just for a few more minutes. I drifted asleep, waking about an hour later with the same feeling. I hoped to shake it, but knew I couldn’t. It was always with me, like a shadow, echoing my every move. Just below the surface ready to remind me that this was not me, not us. That we belonged somewhere else, that this was temporary. And with the feeling, a hope so strong inside me that I believed it. I got out of bed for it. I lived, ate, and drank that hope, that belief.

I pulled myself out of bed. I had overslet again. Doomed to wander this day in a sleepy haze. I took an extra-long shower in hopes to shake the cloud of sleep and in uncharacteristic move, I grabbed a sponge and cleaning solution and scrubbed the shower, the toilet, the sink and the mirror. I looked at my work with satisfaction. Something I could control. It was afternoon already and I had hoped that my mad cleaning binge may have bought my body enough time heal my sore scratchy throat and increasingly annoying headache. No such luck. I wouldn’t be able to go to the hospital today. This terrified me, and relieved me at the same time. I needed a day to recover to regroup to find myself again. But my life was the hospital and David and the thought of not seeing either was agonizing. I called David and told him quietly that my throat was sore. "You can’t come" he said. "You shouldn’t." "I know" I answered. "But I want to." "We can’t risk it." "I know." I went anyway. Trudged the four blocks from my safe haven parking spot near 18th Ave, on the secret block with the missing 'Residents Only' parking sign. I felt awful, tired, sluggish and disconnected. I washed my hands extra carefully before entering the ward and entered David’s room, standing as far away from him as possible. He was sitting in the old blue vinyl lounger, re-working his CV on the computer. "I’m not feeling well" I said. "You look like a ghost." "Yeah, I know. I’m going to get you food. Then I’m leaving."

I picked up a random assortment of food items from the Safeway nearby. Eggo waffles, children’s yogurt, string cheese sticks, oreos, juice boxes and an apple for David. Soup, broccoli and two bananas for me. The bags were heavier than I had hoped but the trip was enjoyable, somewhat. When I got back to the hospital I labeled each item carefully and positioned them in the patient fridge. "You’re good, everything’s in the fridge and freezer. Make sure you eat. I love you. I’ll call you later."

I walked back up Laurel in a fog unknowingly passing my car on the way. I look confused at the next corner and then remembered I had parked in a block closer to the hospital today. I headed back towards it, slightly defeated, but happy to find it. When I arrived at my pseudo home I dropped the bags on the kitchen counter, quickly threw the broccoli and soup in the fridge and headed to the couch. Two uninspiring movies later I was ready to move and went for a walk. I called David three times. The last time he said he had a fever starting. My heart sunk. Damn I thought. I had almost convinced myself that this maybe, just maybe could be a smooth ride. Please?

where is home?

I merged onto the freeway. Exhausted. Headed west, home, or to what I considered home for the night anyway. Dark ominous clouds hung low, but ahead clinging to the last of the daylight, the weather was clearing. Vancouver shone in the distance. I was drawn towards its aura. I took note of the time, displayed in digital orange from the car stereo console. 10:05. Still light outside, barely. It’s the longest day of the year I thought. Is that possible? Yes.

I put on my glasses as I was changing lanes and suddenly it was as if the world in front of me jumped to attention. The blurry snaking line of red lights ahead were suddenly distinguishable as belonging to individual vehicles. I started to notice the crisp edges of everything. It felt as if I had just pulled my head out of a fog. Everything suddenly looked more beautiful. The colors more vibrant.

I thought about the four house keys on my every growing keychain, wondering which I should use tonight. But the lure of the city and driving to the edge of the cloud bank became a necessity, racing against darkness. I reached the hospital just as darkness truly decended. I had passed the clouds, entered the aura, and felt the energy of the hospital drawing near. I pulled up to the side entrance, smoothly parked in a spot only steps from the door and thought to myself, 'Rock star parking', as I headed upstairs.

I thought quickly about my day. I’d taken the wrong exit off the freeway, forgotten my jacket in three different locations, and decided that my car was now slightly askew, likely due to to my collision with a bump, not a bump, more like a sunk on 18th a few days ago.

After my stop at the hospital I drove by the south side, looking up and counting over and down to David’s window. Just to assure myself that I knew where he was. I had stopped in the middle of 16th Ave to do this, just able to make out the windows in the darkness through a number of large leafy trees. A car approached from behind and I finished my counting, convincing myself that I he would be okay for the night. I drove back towards East Vancouver, carefully avoiding the bog ridden lumpy asphalt on 18th and reminding myself to check my tire tomorrow, in the daylight. I wondered why streets were allowed to become so convoluted, wasn’t someone paying taxes to upkeep our roads? I guess when you build a city over a rainforest, you’re bound to hit a few lumps and bumps in the plan. The middle East side was one of those lumps. Streets so damaged by sinking pavement that it looked like they might crack at any moment and swallow up a car, pedestrian, or innocent biker. In fact, I swore I saw the beginnings of a gaping hole on 18th, just before I sent my car sailing directly into a low dip in the street. But I won’t go back to look. The idea of something, or nothing, being below the street, a dark netherworld, was too much to comprehend.

I drove by the first of my housing options, not stopping and hardly slowing down. Not tonight I told myself. It’s okay not to go tonight. I turned the car around in a slow but deliberate u-turn and about 2 minutes later I had arrived at my final destination. I turned off the car, sat back for a minute and sighed. Home. The chain link fence gate squeaked its familiar creak, welcoming me as I passed through. I let myself in the back door. Dropped my bag in the kitchen, kicked off my shoes, glanced at the overdue milk left out on the counter and the empty ketchup bottle still tilted upside down, just in case I wanted to coax out the last drops. My clothes were becoming increasingly scattered on the floor, the couch, slung over the chair in the living room, but I didn’t care. I grabbed two single serving madarin orange jello cups, and parked myself in front of the computer with an oversized spoon. 'Where are the normal size spoons?', I thought, quickly dismissing the idea of a search for such an item, savoring the coolness as I swallowed each spoonful. I sucked the juice slowly out of the fruit bits that had sunk to the bottom before shredding them with my teeth. I sat down, my shoulders turned inward with exhaustion and closed my eyes, basking in the silence. I could sleep now. For days. I hesitated, not wanting to go to bed for fear of not sleeping, or worse, of sleeping and trapped in nightmare after nightmare without escape. Or even worse to wake up from a nightmare, alone in the nightmare of my reality. My eyes stung with tiredness as I debated my next move. I rubbed my eyes hard trying to squeeze the images of the day out to replace them with sleep and peace.

This is home.

*update* transplant complete

Weird tunnel to radiation.

Hi Folks,

Transplant is complete! David saw the helicopter carrying his new cells land at about 8:10 in the evening at Canadian Blood Services on Oak Street and the cells were here at the hospital and flowing by about 9:00, ahead of schedule. Dave and Heidi were with us for emotional support, which was really good because although it was just like a blood transfusion we were nervous and excited. David's heartbeat hit about 115, I'm sure mine was up there as well. All went smoothly. We were all in awe with our medical system and the coordiation that it takes to make a tranplant like this happen.

So, now we wait. David starts anti-rejection chemotherapy this evening which is expected to make him quite sick potentially. He'll get a dose on day 1, 3, 8 and 11. We're on day 1 now. In 14 days we might expect to see the donor cells making blood, but this is approximate. We're prepared for a rough road in the next few weeks. One day at a time.

The tranplant. Life, literally tranfusing in.

We want to thank everyone for the emails, phone calls and visits in the past few days. Don and Peggy you made our morning yesterday - thanks. And collegues from VIU and MOE, we miss you, and thanks for your messages of encouragement and support. All positive vibes mean so much to us and make us feel like we're not alone. More updates to come.

Love you guys,

Cindy

*update* matching donor, back in the hospital

Hi Everyone,

To all those that haven’t yet heard the news – the transplant team found David a matching donor! We’re very happy, but also very scared... Things are moving fast. David was readmitted on Thursday after a barrage of pre-transplant exams and tests that were scheduled over the past few weeks – all of which he passed. His hair started to re-grow last week and he (was) feeling quite good overall.

Although we weren’t able to get back to Nanaimo for more than 48 hours due to an unrelenting series of medical tests/check-ups treatments etc, we did manage to get away for a few days to reflect on everything. We returned to a full house – 7 members of David’s family flew in from Quebec and my aunt and uncle from Ontario. With overwhelming support from friends and family we were married on Saturday. The day meant more to us than we (I) could have ever expected. There were so many people that came together to make it happen – I don’t even know where to start. It was beautiful, fun, emotional, unpredictable and fit our style perfectly. We may have made a few of you cry, but pretty sure we also made you laugh (yes we switched our rings to the ‘correct’ hands)...

Beautiful day.

 



Dinner out. We escaped on the first night.

 We sent off the last of the family on Tuesday and packed in medical appointment after medical appointment, often two a day, all last week. Thursday was a rough day - three (rather stressful) appointments followed by scheduled afternoon re-admission to the hospital. By lunch we realized we had underestimated the emotional upset of returning to the hospital but we made it (thanks Damian) and were even allowed out for dinner on the first night which was a welcome surprise.

So right now, David’s on day 3 of 3 days of pre-transplant chemo. He’s just started to gain weight (fluid) and has short bouts of nausea. The real challenge is keeping sane, being mentally prepared, and keeping the positive thoughts flowing (we need you guys, and thanks for all the support!). The chemo will be followed by 3 days of TBI (sounds better than ‘total body radiation’ which is just plain scary). The donor will provide marrow on the last day of TBI (June 17th) and the fresh marrow will be escorted in person by a transplant coordinator and directly transplanted into David in as little time as possible. Right now he’s being pumped full of precautionary mediations to minimize damage caused by the chemo, the radiation, the transplant.


First night back. Really, do I have to do this?

If you want to, please call or email. It’s an emotional time, but we don’t want to get stuck in our heads, we want to hear from you. We'll do the best we can to explain what's going on. We ask, if possible, for you not to ask lots of questions about the procedures, the drugs – it’s very complicated, overwhelming and very difficult to discuss – if you want to know more, try the BMT website: http://www.leukemiabmtprogram.com/ . The doctors and staff we are surrounded by are experts in all of this - we’re just along for the ride. Bar down, arms up, eyes closed and screaming the whole way. We just want to smile, laugh if we can – hear about your normal lives – we’ll deal with ours one day at a time.

We can be reached at the hospital or email. Sorry if we can’t talk when you call, or don’t answer if you email. We appreciate every word. We expect things to go quickly in the next few days/weeks. I will keep you up to date with emails more often than I have been.

*update* 6 transfusions

Hi folks,

I'm about two weeks overdue on the update. Sorry about that! Rest assured all is well. Time has been flying... in fact May long weekend just snuck by us. No, we weren't in Oregon surfing... next year :) We are still in Vancouver going to the hospital every other day and haven't been able to get back home yet - maybe soon though! In the past two weeks David's had about 6 transfusions (3 platelet and 3 hemoglobin). Pretty standard, except that he's developed a reaction to platelets. Nothing serious, just means he's pumped full of benadryl before the transfusion - makes him very sleepy which is pretty funny. Good news is that David's blood counts are starting to maitain themselves, which means no more transfusions for awhile. His immune system is starting to hold it's own and there is less risk of infection these days.

Had a bit of a scare with a toothache last week that prompted an urgent CT scan and trip to the dentist. Teeth are good, just a few swollen lymph nodes which prompted another round of antibiotics. Seems like it was an infection because the antibiotics look like they are doing the job.

Tomorrow brings another bone marrow biopsy and then... who knows. We're still waiting on news for a bone marrow match. Send in your DNA samples people!

Love you guys,

Cindy

PS (from David) Yes, this is really the life I am living right now. Kind of crazy, isn't it?

PS (from Cindy) Can I go home now?

PS (from Minou) Maaa-wowww?

*update* 5 donuts

Hi guys,

It's Sunday afternoon again... is this the weekend? I'm at the hospital in the leukemia computer room and David's a few doors down getting a platlet transfusion. This week was fairly uneventful overall. David's bood counts have been dropping all week which was expected (David created a model to predict his counts - surprise, surprise). As a result David's energy level has been very low and he's not able to get out much. A hemoglobin transfusion on Friday afternoon has perked him up considerably (amazing what blood can do) and he was even able to get out to see his UBC folks at Spanish Banks on Friday evening for a BBQ. A nice change after spending too much time sitting and thinking (a tough week mentally for both of us). He's still feeling pretty good today, although he did mention this morning that his bones felt dead - which I guess is true at the moment. Although we expected the appetite to disappear by now, David's dedicated to trying to maintain his weight. I just left him alone with 5 doughnuts... bet they're gone already.

Not much else to report. Expecting more of the same this week - David's immune system hit rock bottom today and he started a precautionary round of anti-biotic horse pills - so crossed fingers for no infections. We're not sure what comes next - for now trapped in Vancouver - dreaming of home.

Cindy

*update* 2nd round of chemo

Hi Folks,

I thought it might be time to set up email updates to let you know how David's doing. We are finding it very difficult to call/email/see everyone we'd like to and we don't want to leave you wondering how we are doing. I'm hoping to keep up with this update about once a week, but we'll see how it goes. Some of you I talked to recently, so this is kind of a review, but at least we'll all be on the same page from here out. For those of you out of the loop - we haven't forgotten about you! and we appreicate all the messages that keep coming even though we haven't reponded to say thanks.



Trip to the eye specialist to keep him from going blind.

 David's going through his second round of chemo now. They call it reconsolidation therapy. After a number of very difficult moments (stomach and eye infections, fevers, weight loss) during the first round, it was difficult to agree to a second but we know it's for the best. A second round is actually good news - it means the first round did the trick - David is considered in temporary remission now and if all goes well a bone marrow transplant will be in his future.

As for his current round, we expect the chemo to really kick in over the next week. He's currently on outpatient status which is great because it means he's not trapped in the hospital overnight and he can eat normal real food that doesn't look like it's been pre-digested (hospital food's not going to make anyone 'better'). We hope that he'll be able to stay on outpatient status for the full cycle (6 days chemo, 30 days no immune system, 7 days of bone marrow recovery) which will mean daily trips to the hospital for blood, medications, tests etc. If he starts to show sign of infection they'll take him back in - we're hoping to avoid this, but we know it might not be possible. Right now he's doing ok - a bit nauseated, slowly losing his appetite, napping a lot, but still up and around, walking when he can, playing a little rock band now and then :)

As for our last few weeks - David recovered well from round 1 of chemo and we were able to go home together for the first time since we left in January. We were home for almost a week and it was wonderful (ok, there were 3 trips back to VGH in that week, but we didn't mind). David relaxed and I desperately tried to get the yard and house into a more manageable 'away' state. I may just have to embrace blackberry jam this year. We even had Easter dinner at home in Nanaimo with my family, and David's mom flew in at the last minute as well. We definitely weren't expecting to have time at home so we were very happy that the doctors could rearrange David's treatment for a few days so that we could get a break. Mentally the trip back helped us a lot and we now feel like we have the energy to keep going.

So, a rough couple of months to say the least - but we're doing ok. We're very happy to have each other and we know that what we're going though will make us stronger eventually. Until then, thanks to all of you guys for pulling us through :)

Time for a glass of wine in the sun...

Cindy (and David)

*update* easter



View from ferry of UBC/Kits.

Hi guys,

Just wanted to send an update - we kind of lost touch for a while. David's out of the hosptial and doing really well. He was released somewhat unexpectedly just before Easter and we jumped at the doctor's offer to rearrange David's treatment so that we could go home for Easter weekend. David's mom flew in and my sis, brother-in-law and parents joined us in Nanaimo. We really needed to go home for a bit and it turned out to be a great weekend. David felt better and better every day and even regained his appetite. After watching someone struggle to keep anything in for so long, watching him eat and enjoy food was pretty good. Slept in our own bed, woke up to homemade coffee and battled the already out of control yard - what more could we ask for. We enjoyed every minute. David even pushed around the lawn mower a bit, which seem to entertain everyone - I think his mom took 14 pictures of the 'event'.   

Since Easter we've been able to go back to Nanaimo again and spend a few almost normal days. Apparently it's hockey playoff time which kept David busy while project blackberry obliteration and project repaint bathroom occupied my time. The time at home has been a bit bittersweet because David's next round of chemo starts tomorrow - so that means 40 days in Vancouver - 6 days of chemo and about 30 days of monitoring and blood tranfusions. We're hoping the yard doesn't swallow the house up in that time :)

David asked me last night if we were prepared for battle - and I think we are - another round of chemo is hard to think about, but we know it's for the best. David's despertley trying to pack on the pounds (most recently a Big Mac, McChicken, large fries, chocolate milkshake - and I think it was 11 am), but the effort is futile, the chemo will likely cause even more weight loss. Back to meal replacment drinks and toast probably. Good news is that the doctors are going to try and keep him on outpatient status for the chemo, so this would mean daily trips to VGH rather than 24 hours a day trapped in VGH. It'll be hard without the constant care of the hospital, but we hope that David will remain infection free through this round.

After this round we expect a bone marrow transplant will be necessary in mid-June. They are still struggling to find a donor - if you are interested go to www.onematch.ca - but you ca't just be tested to match David - you have to be willing to give to any Jo'shmo. It's a crazy thing - you get a big q-tip thing in the mail - rub it on your cheek - return it in the mail - then into the database you go. They don't even take a blood sample. (I'm not pushing this on anyone, but I get asked lots of questions about how people can sign up to be matched with David)  

Ok, that's it for now. Ski season's over, our cat's disowned us, and we got stuck in a classic Vancouver traffic detour for an hour today - but it doesn't matter. My new skis can wait till next year, the cat will love us again when we feed him and while everyone else in the traffic mess freaked out did u-turns, we enjoyed the sun, commented on how pretty the trees looked and laughed at this crazy world.

Hope to see you, talk to you, email you soon,

Cindy (and David)    

*update* new look

Hi guys,

Thought you'd enjoy a picutre of the new David. Newly out of isolation and now accepting visitors!

If you want to stop by please do. Still at VGH. Still on the 15th floor. Room 460. Phone 604-875-5400 ext 60645. Don't be shy, David's still David. Just a smaller, tireder version.

A few visitng requests:

- If you feel even a bit sick please don't visit. His immune system is still at zero.
- Don't be too shocked - David looks like Gandhi.
- Please keep visits short. 5-10 minutes is more than enough to exhaust the poor boy.
- And, if you can, try to keep the questions about what's next for David to a minimum. As you can imagine, repeating the same thing to friends, family and coworkers is exhausting.

To help with my last request and because I know everyone is curious and concerned, I'll share with you guys everything we know about 'the plan'. Apparently David's treatment is analygous to removing weeds from your front lawn (doctor's analogy, not mine). Anyway, pretend his bone marrow grows grass normally, and that the leukemia is weeds. The chemo is pesticide. So basically the chemo has done it's job and killed the weeds and the grass. Now we are waiting for the grass to grow back, hopefully without weeds. If David's bone marrow produces grass, no weeds, David's in remission.

If he gets to a stage of remission the docs will consider a bone marrow transplant, but that's not on the table yet. We did find out a few days ago that David's brother is not a match, so the doctors are currently searching for an unrelated donor. When I say this I usually get a bunch of questions about getting tested to see if you are a match - it's probably pretty unlikely - but if you are interested go onematch.ca for more info. The site has a lot of info on bone marrow donation, and no, you can't be tested specifically for David. If you decide to go through with it you have to be okay with the idea of some stranger walking around with a bit of your DNA, if you ever match someone.

Protected from everything on the way to the eye doctor.

So bottom line, right now we just have to wait and be patient. Keep sane in this crazy hospital and try to get some weight back on David.

In the meantime we appreciate all the support, positive thoughts, messages, emails, videos, picutres, phone calls that you've sent our way. We read and are enertained by everything, we just haven't been able to respond and thank you all yet!

Cindy

*update* 1st round of chemo



While he still has hair.

First, sorry for the delay in updates. I appreciate the privacy that everyone has given us. This has been a difficult month. As you may be aware, David was rediagnosed with acute luekemia and was treated with an intense 6 day round of chemotherapy 5 weeks ago. The chemotherapy hit David hard and wiped out his immune system, as expected. As a result he unfortunately picked up very serious stomach, eye and skin infections which he has been battling for the past three weeks. They are starting to clear up and he's feeling a bit better now, but he's still very weak. He's started to eat a bit in the past few days, but he's lost about 30 pounds, plus his hair. Considering what's he's been through, his spirit is still strong.

His immune system is still extremely low, but the doctors expect it to recovery slowly. Once his immune system recovers a bit, he may get a small break from the hospital. After so long in the hospital, you can imagine how much he is looking forward to a few breaths of fresh air.

I'm sure there are lots of questions about what's next. We wish we knew. Becasue of the great deal of uncertainty, we really don't know what the future holds right now. Although David had chemo, the battle is far from over. We are currently waiting to see if the luekemia will return. If it doesn't he may be a candidate for bone marrow transplant. Right now we're focusing on day to day battles trying to make sure David gets sleep, eats a bit and walks a few steps.

Thinking of everyone in the office and thanks to those that have emailed. We read everything, we just haven't been up to responding recently.

Hope to see everyone soon,

Cindy

Fresh air. Out there.

the nightmare

Usually I wake up in time. You know the time... when you wake up seconds before it happens. But not tonight. I am awake now, really awake, drenched in sweat, one of his old t-shirts I sleep in clinging to my damp skin. The clock bears 5:40 in that echo of electric green. I can make out basic shapes in the room. A pile of dirty laundry overflowing from the basket. The fish tank, long forgotten but somehow still inhabited with three tiny fish that seem to thrive in the self-sustaining ecosystem I created for them, or more acurately, that they created for themselves. The house is still but not silent. From the bedroom I can barely make out the whirr of the cat fountain that I never remember to fill and that the cat refuses to drink out of anyway. Outside the wind nudges the house, teasing it to lean. I pull the blankets closer around me and flip myself over to the other side of the bed. Reach my arm out to feel for the cat. He's there curled in his bed beside my bed. I'm not alone. I curse the clock. This always seems to happen around 5:40. Too early to get up and too late to salvage a good sleep. I toss and turn finally giving in and getting up to pee. The inky dark of the lowest part of the night seeps into the house, into my bones. I get nervous and rush back to the safety of the warm blankets. Curled under the covers I remember my nightmare. He's gone. And I am here. I stare desperately at the clock... 5:42. The minutes slowing as my life seems to disappear out from beneath me. I don't want to remember anymore.

what's for lunch?

It’s two days later.

An interruption. Spell your name? D-A-V-I-D G-A-U-M-O-N-T hyphen G-U-A-Y. Birthdate? Septembertenthnineteenseventytwo. Ok.

One nurse leaves and the I glance over to watch the other attach a bag of what I think looks like orange juice –orange juice with pulp- to David’s plastic and metal tree of medical equipment . The tree of life? I guess so, kind of. Plump bags are hung like ripe fruit for the picking. A mysterious blend of nectar draining perpetually into his veins to be distributed by his heart. The orange juice obviously isn’t juice, but instead the sticky bits of the blood. I glace up at the write on run off calendar on the wall and notice today’s numbers. The platelets were at 7 this morning. So he needs them



Finally the nosebleed stops.

 I flash back to a month ago when he endured a 6 hour nosebleed. They transfused platlets into him for 4 hours before the bleeding finally stopped and the garbage bin full of bloody soaked gauze and Kleenex stopped increasing in size. That was the first time in my life that I thought I might pass out. The blood just wouldn’t stop and the second David released the latest gauze from his nose a stream of blood would escape making it’s way efficiently down his chin, chasing gravity.




One of many uneaten hospital dinners

A few minutes ago I set off on a journey to select something for lunch that my stomach would accept. I toured around the cafeteria, poked at a few of the sandwiches and debated the option of a tuna salad sandwich with grapes and walnuts. I scanned the ingredients. Tuna, grapes, cherry tomatoes, hard boiled eggs. Wait a second, hard boiled eggs? In a tuna sandwich, with grapes and tomatoes. Um, I don’t think so. Notice I didn’t even comment on the walnuts. Some things just aren’t worth the effort to try and decipher. I continued my search cringing at the idea biting into a sandwich with such ingredients. I stopped briefly at the pre-packaged sushi wondering if the trend towards using brown rice instead of white would catch on. Come on, really, if brown rice sushi makes you feel better about yourself you’ve got bigger issues in life that you should probably be dealing with.

So my options are limited. I walked briskly past the pad thai – only denying it because it was too big, too much food, and I liked it so much I’s eat it all and feel sick for the rest of the day. The Chinese stir fry received the same pass for the same reason and the grill special looked greasy and unappetizing as usual. So, in mid-stride I did an about face. Pushed the up button on the elevator and escaped back into the room. I had a triscuit and consider eating cheesecake that Paul dropped off yesterday for lunch. But I won’t. Bet it would taste great though.

vancouver on pause

Out the window, in the distance I notice a sign. Sandman. It’s green. Beckoning. But I’ve never noticed it before. In my head a phrase repeats. Mr. Sandman take me away. I beg you to. Take me, take us away.

It’s 3am. I’m sitting, perched really, on the edge of the bed, my eyes blurred with sleep. Outside the city seems to be on pause. Still. Shiny and sparkling in the darkness. I search for signs of life, movement, but nothing, not even a car on one of the many bridges that connect a peninsulated downtown to the rest of the world. The city on pause for a moment – a strange thought. While beside me David writhes in sickness. He’s vomiting now.

Still.

I reach over and put my hand on his shoulder and silently encourage my arm to move, to rub his back, to provide him with some sort of comfort. As I whisper – it will be ok – I realize these words seem false and lifeless, but I have to believe, I want him to believe. I say it again. This time to convince myself.

He’s sitting on the opposite side of the bed from me, doubled over, a cytotoxic bucket clutched in his hands. From my vantage point his shoulders blades protrude precariously from beneath the hospital gown. I as I will my arm down his back I can’t help but notice the skin stretched so thinly over ever rib and bone. I resist the urge to run, to throw up, myself. I feel sorry for him, not because he’s sick, not even because he’s violently vomiting in front of me, but because I know he despises the idea of throwing up. The man that never throws up struggling to keep his insides from being expelled into a bucket of toxic waste. This is our reality now. The life we left behind seems distant, a memory too painful to engage. We’ve been here for two months now. Or has it been two years? I’m not sure. Time moves differently here. Moments that I used to categorize into minutes and days used to all line up in a row. But now it’s like moving through time in a haze. Like I show I saw once on driving in the fog. Apparently it’s difficult to judge your speed when your brain can’t disseminate passing objects. Trees, houses, invisible, coated and camouflaged under a wet blanket made up of billions of tiny suspended droplets of water. You rush forward blindly into whiteness with no sense of when you might reach your destination and what you could be missing on the way.

*update* acute leukemia

Hi Folks,

Things are no going well for us. David's disease has rapidly progressed to acute leukemia. He starts chemo today for 6 days. They're going to try and knock the disease down a bit - if it works there may be more options to think about, but right now it's too hard to think any farther than the next 6 days. I know lots of people are wondering how he's doing. I wish I had better news.

His spirits are ok. We're coping ok. We're trying to make the best of every moment, but it's very difficult.

We request no visitors or phone calls. I will not be providing update emails would prefer that a mass email is not send out. I will answer individual emails when I can.

Cindy 

*update* back in hospital

David was admitted back into the hospital on Tuesday morning. It's been a rough couple of days. Lots of tests without answers. He's in surgery now for a lymph node biopsy. We're still hoping the latest is all related to a severe infection that will resolve itself with time.

Trying hard to be positive, but it's more difficult this time. We're also keeping a bit more to ourselves right now - trying not to spread the word that David's back in the hospital - of course this means we have less support - which is harder, but we'll manage. We miss home a lot these days.

*update* released

Hi guys,

I'm a bit behind with updates but I wanted everyone to know that David was released from the hospital late last week. He's doing well considering - still very weak, has lost a lot of weight, but says he's feeling better every day. Although we are happy to be free of the hospital, David must remain close to VHG as the doctors will continue to monitor his condition very closely as an outpatient (we're staying at a friend's place about 6 blocks from the hospital). We understand that there is still a lot of uncertainty with respect to the future, and this will be something that we will have to learn to cope with. For now we're going to focus on the short term - over the next few days we will wait to see if David's blood levels will stabilize in response to the drug treatment. If all goes well and David's treatment is effective we hope to be able to return home soon - I wish I could be more specific with a date, but we still need to plan day by day right now.

Miss you guys, but I might see you soon - if we stay in Vancouver for a few more weeks I might start to work from Surrey...

Thanks again for all the support, emails etc. it means so much to us, even though we haven't had the time to respond like we would have liked to. Hope to talk to you and see you all soon,

Cindy


Team Puffy in Van