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.