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