David having chemotherapy

(This is a really crappy picture that I took with my phone of David having chemotherapy in the fall of 2005. I never brought anything more than a phone camera with me into the clinic. It didn’t feel right to aim for “quality” pictures.)

I drove four cancer patients this morning because the Canadian Cancer Society is short of drivers right now. They’re always short, but there was such a demand on this particular day that the dispatcher practically begged me to drive. I first checked the weather forecast (because I don’t have snow tires), and mapped out all the addresses to see how many people I could take. My original number was five, but one patient’s appointment was either cancelled or she made alternative arrangements. Two of the remaining four patients were people I’d driven before, so I already knew where they lived. I set two alarms for this morning, and it took me an unusually long time (i.e., more than 30 seconds) to fall asleep because I was anxious I’d sleep past the four hours I’d had before the first hospital run.

I picked up Patient 1* at 6am. I knew I had the right house, I’d triple checked the number, I could see the lights on, but he wasn’t waiting outside like he said he would. I didn’t know what to do, so I waited. Then I knocked lightly. Then I phoned him. He said he was coming out. I can’t get annoyed — it’s his appointment after all, not mine. I’m just the driver. So I wait.

Eventually he emerged from the house, slowly but no more slowly than most of the other patients. I don’t have much time to get him to Princess Margaret Hospital but I try not to speed because I’ve already passed by one intersection accident nearby. During our conversation he admitted that he was dreading the MRI, really dreading it to the point where he was reluctant to leave the house. It wasn’t until I drove him home three hours later that he confessed just how much he’d been dreading it. He was in pain and had taken Tylenol to help him get through the appointment. At his previous MRI, they had to give him morphine.

Patient #2 actually lives very close to Patient #1 but I did not have the heart to combine their trips and take her to Mt. Sinai an hour and a half early. The appointment was already early (8:00), and I remember how badly she felt getting up early the last time I drove her. So I picked her up at 7:10 instead of 6:00, and she was very grateful. (They are always very, very grateful.)

I’d driven her before, so we continued our conversation sort of where we’d left off. I’m aware that I like to do this on purpose to promote the feeling that we aren’t having a one-off conversation, despite the fact that our connection is based purely on them being in treatment. I prefer a positive outlook, that they will recover and that we could bump into each other at the grocery store or on the street, even though drivers are trained to be discreet and avoid recognizing patients openly since people do not always disclose that they’re being treated in the first place.

Patient #2 is having chemo, so I’m dropping her off and not taking her home; chemo takes around five hours, depending on the drug and the drip rate. She’s the youngest patient of the day, and we chat about photography since she’s very interested in it. She thanked me again profusely when I dropped her off at Mt. Sinai shortly after 7:30.

Patient #3 lives in Etobicoke, but I was surprised at how little traffic there was during rush hour and arrived 15 minutes early. I found out later that she needed those 15 minutes — she was in a great deal of pain and was having other health issues plus side-effects from medication. I’d driven her last summer, but she was now using a cane and I noticed an alarming decline. She was also falling asleep in the car and had difficulty speaking.

I picked up Patient #4 enroute as she was having a procedure at Toronto Western Hospital earlier than Patient #3′s appointment at Princess Margaret. While in treatment, Patient #4 had slipped on ice and broke her shoulder, so she requested that I phone her enroute because it took her 10 minutes to put her coat on and tackle the stairs from her apartment. When I arrived, I was shocked to see a huge flight of wooden stairs at the back of the house that was the equivalent of at least three storeys. She told us in the car that she had to bribe taxi drivers to help her get her groceries up those stairs because she couldn’t carry anything with a broken shoulder, plus she was weak from the treatments.

After I dropped off Patient #4, I continued to Princess Margaret Hospital. Patient #3 was telling me something and in mid-sentence she stopped and clutched her mouth. I realized too late that I’d left the sick bags in the driver’s kit and it was in the back of the car. I was only a few streets away from PMH and she hung on while I grabbed napkins from the side door to give to her. I could tell she was doing her absolute best to ride the wave of nausea and not let it take over her. We made it to the hospital and she waited in the car while I found Patient #1, who was more than ready to go home after waiting for an hour and half after his MRI. He’d even set an alarm on his watch to wake himself up if he’d fallen asleep in the lobby. (I would’ve been none the wiser except that the alarm went off in the car.)

I’m relating these stories today in the hope that someone will read them and consider becoming a volunteer driver for the Canadian Cancer Society or any similar agency in your area that provides a driving program. I hope it’ll help people understand why the driving program exists and understand that public transit is not a viable option for many situations that cancer patients find themselves in while in treatment.

For example, rush hour: the TTC is packed and patients are, in many cases, too weak and slow to move quickly enough to keep up with the commuters. Their immune systems, which are already vulnerable and unable to ward off viruses and bacteria, can’t handle the exposure to the public and are highly sensitive to ordinary things like scents and food. I remember very clearly when David got food poisoning from eating spring rolls and it lasted for an entire month, during which he was constantly in the bathroom (I had to buy a padded toilet seat for him).

I know patients who take the TTC simply because they have to, and suffer for it. But for a driver to take even just one patient on one trip, that can make a difference in the patient’s overall health during a treatment cycle by not letting them be exposed to a multitude of illnesses. In my view, donating your time is more valuable than donating money, because it includes the human interaction in taking care of each other — non-patient to patient — that is lacking when making a monetary donation. People are skeptical about where funds are going these days, so my response to them is this: help people directly.

If you’re interested in knowing more about volunteer driving, do get in touch with me. I can pass along all the information you need to sign up.

* I feel guilty for using numbers rather than names, but I’m doing this for confidentiality

Possibly related posts:

1. Offering Myself Up For Cancer Research I spoke this morning to another research coordinator regarding a...
2. Gah. When my Ontario Health Insurance card became valid last week,...
3. More Bloodletting for Cancer Research Nokia 6682 It was a bit jarring to be back...

Terry Fox Memorial at CityPlace

The last three weekday walking days were on east-west routes north of here, so I was looking at my familiar southern route with fresh eyes today since it’s been nearly a week. I always notice the Terry Fox Memorial as I pass by this way, and as I happen to always go by on foot, I’m reminded of how enormous the challenge was for Terry Fox to run across the country with a prosthetic leg. I’m walking only a couple of hours on weekdays with two legs, I can only imagine the effort and pain it took to do this all day, day in, day out, one leg doing the work while swinging a muscle-less leg with every step. The enormity of this strikes me every time I pass by Terry Fox’s youthful face. He was an ordinary young man making extraordinary decisions and living them every single day, something any one of us can do.

I wish I could do the Terry Fox Run this year, but it happens to fall on the weekend I’m shooting a wedding up at Sauble Beach, where I’ll be stationed from Friday to Sunday. Maybe I’ll find a way to work in my own 1-person Terry Fox Run along Lake Huron! [Update: I just signed on for the Terry Fox Run in Port Elgin and set up a sponsorship page! Please sponsor me!]

by the CN Tower

One of the reasons why I drive cancer patients as a volunteer is because it puts me in a mindset of gratitude in the morning. I drive people of all ages, from all backgrounds, many are immigrants to this country and sometimes have no-one here to support them during treatment. I’ve driven men, women, teenagers, a boy as young as five years old. Cancer does not discriminate. It’s a sobering thought, but that patient in the passenger seat may be me one day.

graffiti under the Strachan Avenue bridge

One of the reasons why I’ve been doing all this walking is because I have to take my health more seriously. I’ll be 40 years old next year. If I don’t take care of myself, there is no-one to take care of me. If I want to continue doing what I’m doing — working, photographing, travelling, etc. — then I have to do everything I can to maintain good health, to stave off illness and injury and hopefully disease. Being sidelined, especially during wedding season, would be more than inconvenient, it would wreak havoc — I don’t want to imagine if it was more serious than that. Getting pneumonia last December was my wake-up call, and this summer I finally answered: I’m eating better, and I’m much more active than before.

Liberty Village

Possibly related posts:

1. Bullet The Blue Sky Ragged from today, it made my head grey. Walking home...
2. Wednesday By Cameraphone Cameraphone, yes — I forgot my camera, watch and iPod...
3. Random Wednesday Rants Oh Income Tax Refund, where art thou?!? (It’s been a...

Early this morning, Jack Layton, leader of the New Democratic Party and the Official Opposition in Canada, died of cancer. Whatever your politics, there is no denying Jack Layton loved Canada and worked tirelessly to make it a better place. On August 20, less than two days before his death, he addressed a letter to the whole country, including others with cancer.

http://www.ndp.ca/letter-to-canadians-from-jack-layton

I’ve posted some excerpts. Clicking on anything will link you to the whole letter.

Canada will miss you, Jack.

Possibly related posts:

1. Happy Birthday Canada! July 1 is Canada Day, but I wanted to post...
2. Cross-Canada Run Update I look at this video and I can’t help but...
3. National Gallery of Canada A couple of photos taken at the National Gallery of...

Possibly related posts:

1. Food You Love, But Doesn’t Love You Back In reading Tanya’s blog, I came across this reference to...
2. Doing My Part For Cancer Research I mentioned last month that I wanted to do more...
3. Offering Myself Up For Cancer Research I spoke this morning to another research coordinator regarding a...

I’ve been writing on the internet for a relatively long time. I still have my first (Yahoo Geocities) web pages archived from 10+ years ago, before I started writing my Blogspot website in 2002. Many people started blogs at some point or another and have since abandoned them, either because they lost interest and/or time for writing, or they do all their writing in Facebook. Not many people maintain personal blogs anymore, and those who write regularly (and well) are even more rare. Derek Miller was one of those rare gems who wrote both regularly and well on a broad number of topics. He was a self-admitted Geeky Guy, and being of the geeky persuasion myself, those are my favourite kind. Surely you’ve heard: the meek geek shall inherit the earth.

I don’t remember when I started reading Derek Miller‘s blog. I think it may have been while I was still living in Vancouver, since I have mutual acquaintances and the blogging/tech community in Vancouver is pretty close-knit. Everyone either knows each other, or knows of each other — at least by name. I also discovered at some point that we had an unusual connection: I met a friend and bandmate of Derek’s in the ’90s when I was living in Edinburgh, Scotland. I shared a flat on Morningside Road with four others, one of whom was Kirsten. Kirsten’s cousin Alistair was visiting from Vancouver, and he was the first Canadian I’d hung out with in a very long time. I remember him talking about being in a band, so you can imagine my surprise when from a series of links in Derek’s blog I found the connection to Alistair a good decade later.

I remember reading Derek’s website via links from other people’s websites, too. Like many blogs, including my own, it’s evolved over the years. I remember when it looked different, before it was on Movable Type. Derek’s writing reminded me of David‘s: clear and concise. I always wished writing could come as easily to me. I appreciate a well-crafted phrase probably more than the next person, and in this digital age of hyper-speed journalism a la HuffPo (where even the syllables in Huffington Post are shrunk down to two), I do appreciate words that are written out properly and articles that are well-researched, with depth and clarity. I linked to Derek’s photography posts because he broke down the technical jargon for non-technical people, and — let’s face it — he saved ME from writing it all out.

Writing isn’t my forte, but it’s something that is important to me so I continue to do it, as often as I can. I admire people who can write, and Derek was one of those people.

Derek was also one of those people who got cancer. It shocked me because he was diagnosed in 2007 at the same age as David, but with colorectal cancer. Suddenly I was reading his blog from a different perspective, and I was pulling for him with the awareness of a reader who is familiar with cancer treatment and its various side-effects and outcomes. I was hoping Derek would beat the odds.

The YouTube video above is Derek speaking at Gnomedex 2007 from his bed at home via video linkup, sidelined by the effects of treatment. He speaks about living with cancer, then fields questions from the conference attendees. 50 minutes may seem pretty long, but even across a video link, bedridden Derek is funny and upbeat, very open about sharing his cancer experience. I may be a captive audience already given the subject matter, but it was an informative and quick 50 minutes. Despite being a Geeky Guy who used technology in an advanced way, it’s clear from the video he wasn’t a hide-behind-the-screen type of personality — Derek was obviously easygoing, friendly, and enjoyed live human interactions. Cancer didn’t seem to get him down in the video, although the dark days were not shied away from in his blog. When things turned worse he didn’t make light of the impending situation, nor did he ever sink into maudlin territory. Derek faced his illness head-on.

For us, David’s cancer was so aggressive it left him with little time or energy to share much of his experience. The intensity of treatment robbed David of much chance to share anything. That’s probably why I was so drawn to Derek’s blog when he started writing about cancer: he was already accustomed to blogging and had more time to write about what he was going through. I imagine if David were in treatment for as long, that he would’ve had more opportunity to write about what he was thinking and feeling at the time, too. Derek addressed questions that I wished David’s friends could have had answers for back then, questions specific to his treatment. Derek also addressed the practical question of how much to share with the internet public and even his own family and friends.

Two months ago, Derek’s wife threw him a Living Wake, something I had (half-jokingly) planned with my friend Eliza all the way back in 1999, when everyone thought it was morbid. I’m glad Derek had a Living Wake, and proved our point: a wake is a party you wouldn’t otherwise be able to participate in, but shouldn’t miss!

Derek passed away on Tuesday, May 3, at home. Right now my thoughts turn to his wife and children and the rest of his family. (Like David, he was an only child.) I would read his wife Airdrie’s blog from time to time. I know what it’s like to be a caregiver. His father, who also has a blog, posted about his son’s passing and included an article written about Derek in the Vancouver Sun yesterday. There’s a huge outpouring of sadness from the various communities Derek was a part of, and there are articles all over the internet about his last post. There were so many hits to his website that it was shut down for a while, but it’s back up and will remain an archive.

Salon: “A blogger chronicles his own death” – May 5, 2011
Gawker – “A Writer’s Astounding Self-Obituary” – May 4, 2011
Daily Mail – May 6, 2011
CNN: Blogger announces own death after battle with cancer – May 8, 2011

Another reason why I had read Derek’s blog with such interest is that his last days ring very familiar with my own experience with David (especially when he lost his voice). I knew from Derek’s posts when the time was drawing near and it left me with a very strange feeling of dreaded certainty when the end would be. I knew that he would write his own last post, published posthumously.

Derek’s writing reflected our beliefs: neither David nor I were religious or believed in the afterlife. We were surrounded by people constantly quoting God and scriptures, but it fell on deaf ears — we didn’t believe any of it. David was a romantic at heart but ultimately he was an intellectual, a man of science; he wasn’t expecting to meet me on the “other side” or be my guardian angel, nor was I expecting him to appear to me in some other form to guide me. When I sat in the hospice room with David’s body after he took his final breaths and I watched his physical form change, I knew it wasn’t him anymore but neither did I think the David I knew in life was anywhere else.

Reading Derek’s ideas about life and his own death were much more relevant to my own thoughts and experiences and discussions with David than anything I’d read in a very long time. I thanked Derek for writing while he was alive, and now that he’s gone I thought I would thank him again, publicly, here. His blog has been an inspiration to me to write well, and keep writing, and I will continue to do so until I can’t anymore.

Rest in peace, Derek. You were a blogging luminary, and you made a big difference to many people.

Possibly related posts:

1. Words When we commit words to a page, we leave something...
2. Work Avoidance Behaviours My SFU coursework has had some stiff competition lately: 1....
3. The Week Thus Far I’ve been meaning to write up the rest of the...

The film score composer, Hans Zimmer, and “Stand Up To Cancer” song co-writer Ann Marie Calhoun conduct an orchestral interpretation of the “Stand Up To Cancer” anthem. I know there’s a pop version of this song, but I could barely get through it (yes, I must be getting older!).

http://www.standup2cancer.org/

If David had beaten his cancer, we would’ve celebrated our fifth anniversary today. Please, support cancer research and patient advocacy.

Possibly related posts:

1. Offering Myself Up For Cancer Research I spoke this morning to another research coordinator regarding a...
2. Phone Buddy I got a call from Washington, DC, today. It’s taken...
3. More Bloodletting for Cancer Research Nokia 6682 It was a bit jarring to be back...

It’s official — I am now a volunteer driver for the Canadian Cancer Society! It’s been a process, and this morning was the final step before I could start. Had a two-hour office training session this morning at 8am, then toured Sunnybrook Hospital, Princess Margaret Lodge, met the dispatchers, and over to Princess Margaret Hospital, all before I started my afternoon work at The Firm. I start driving patients next week, when I return from Boston.

Possibly related posts:

1. Tuesday Notes Another gorgeous sunset photo from the trip to Barbados —...
2. Offering Myself Up For Cancer Research I spoke this morning to another research coordinator regarding a...
3. Gearing Up for Today Had lots of sleep last night, so am feeling much...

As part of my participation in a University of Toronto research study a week ago about psychological health in women, I was given a resource list that I thought would benefit the greater Googling public in the Toronto area. I want to write more about this, but as usual I’m short on time so I’ll just post the list for now.

Distress Lines

Distress Centre of Toronto 24-hour crisis line: (416) 408-4357 (408-HELP)
http://www.torontodistresscentre.com/

Gerstein Centre Crisis Line: (416) 929-5200
http://www.gersteincentre.org/

Referral Services

Women’s Counselling, Education, and Referral Service: (416) 534-7501
- free service offering referrals to therapy
http://www.wcrec.org/

211 Community Connection
- information on government health and social services
- dial 211 or visit: http://www.211toronto.ca/

Low-cost or Free Counselling Services in Toronto

1. OISE/UT Counselling and Psychoeducational Clinic
   - individual psychotherapy with graduate students, runs Sep-May, sliding scale
   252 Bloor St. West, 7th Floor (Bloor/St. George)
   Tel: (416) 978-0620
2. Catholic Family Services
   - individual and group psychotherapy and wellness groups — sliding scale to no fee
   1155 Yonge St., Suite 200 (Yonge and Summerhill)
   Tel: (416) 921-1163 (they also have a location at Yonge and Finch)
3. Family Service Association
   - individual psychotherapy, sliding scale
   355 Church St. (Church and Gerrard)
   Tel: (416) 595-9618
4. Women’s Health in Women’s Hands
   - health services (and therapy) for women of colour in the Toronto area, no fee
   2 Carlton St., Suite 500 (College and Yonge)
   Tel: (416) 593-7655

Possibly related posts:

1. Group Therapy, Take One I spent all morning at a group bereavement session. The...
2. It’s Been a Long Day I FINALLY obtained a copy of the lease agreement today,...
3. Toronto: Yonge Street Am posting on the fly, here, so just a couple...

I also like the French version (there are subtitles in English as well):

I’m in one of the two teams (thus far) from The Brides’ Project doing this year’s Relay For Life to benefit the Canadian Cancer Society. I just set up my personal page:

http://convio.cancer.ca/goto/gailedwinfielding

Just like the previous two years we’re doing the overnight relay wearing “basement” gowns from The Brides’ Project, so stay tuned for more photos of us wearing the UGLIEST wedding dresses you’ve ever seen. Here’s the photoset from last year of Neesa and Natalia and I looking for our ultimate fugly gowns: [thumbnails] [slideshow]

Our team pages for The Brides’ Project are here:
The Brides’ Project
The Brides’ Project Too

Here’s a video of The Brides’ Project Team from 2008.

Relay For Life takes place at Forest Hill Memorial Park on Friday, June 11, from 7pm to 7am.

If you’ve never heard of Relay For Life, here’s the scoop:

Relay For Life is a 12 hour, non-competitive, overnight event. Teams of 10 people – family, friends, neighbours, co-workers – take turns walking around a track to raise funds to make cancer history.

The Canadian Cancer Society Relay For Life is more than just a fundraiser. It is an opportunity to get together with family and friends and celebrate cancer survivors, remember loved ones lost to cancer, and fight back in the hope of finding a cure for this terrible disease.

Relay is fun, fulfilling, and your participation gives strength to our mission to eradicate cancer. Walk with us in this inspirational 12-hour overnight event.

Last year Neesa and I were up all night long without a nap. At some point in the night, I think we lost our minds:

Natalia also had a wardrobe malfunction.

We’ll have a tent set up, plenty of snacks and drinks to keep us going, and it’ll be a lot of fun staying up all night together! If you can’t join us, we would love your sponsorship of any amount.

Possibly related posts:

1. Relay For Life 2009 — please sponsor me! I’m doing this year’s Relay For Life to benefit the...
2. Relay For Life 2009 I signed on as team captain of The Brides’ Project...
3. More Volunteering [Royal Botanical Gardens, Burlington, Ontario - April 2008] Last night...

Back in May 2008, I posted an appeal for people of Asian descent to sign up at local bone marrow registries on behalf of Carolyn Tam, who was fighting leukemia. Less than one year later, I sadly posted the news that Carolyn had passed away.

From the One Match website:

A person’s best chance of finding a matching donor is within his or her own ethnic group, it is important that the composition of OneMatch reflect Canada’s rich ethnic diversity. It is also important for the future of OneMatch to attract young donors.

The Asian population is not well-represented in the donor databases, creating a situation where it is difficult to find matches for Asians waiting to receive bone marrow transplants.

More than 20 Chinese patients in Canada are searching for a stem cell donor that can save their lives. People 17-50 years of age are needed to join OneMatch registry.

There is a National Chinese Stem Cell Drive taking place in Vancouver and Toronto on Saturday, March 27 from 11am-5pm. There are three locations in the Greater Toronto Area and one Greater Vancouver:

Markham: First Markham Place (Hwy 7/Woodbine)
Scarborough: Splendid China Mall (Kennedy Rd/Steeles Ave E.)
Toronto: Chinese Gospel Church (450 Dundas West/Spadina – Chinatown)
Richmond: Aberdeen Centre (No 3 Rd/Cambie Rd)

To find out more information, please visit www.chinesestemcell.ca or www.onematch.ca today! Registering as a stem cell donor is free.

Possibly related posts:

1. Carolyn Tam Update The bone marrow registry is still seeking a donor for...
2. Save Carolyn http://savecarolyn.com/ This is Carolyn Tam, who was diagnosed with leukemia...
3. Rest In Peace, Carolyn I’ve been sitting on this for a couple of days,...