*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