Textual Healing at PodCamp Toronto 2010

We’re really disappointed that we won’t be able to attend PodCamp Toronto this year. It’s always a great event at which to learn, meet new people and reconnect with our friends. However, with Andrea in chemotherapy right now, we have to sit this one out.

The good news is that we’ll be able to follow the event from the comfort of our home and we’ve been invited to deliver a session via video Skype. Our session is called Textual Healing: The use of social media for narrative therapy, connection and support.

Here’s how our session is described:

Communities can exist for many reasons, but one of the most striking recent examples is the support community that has arisen around Canadian social media fixtures Andrea Ross and Mark Blevis, as together they work to make Andrea a breast cancer Survivor.

Their place of wellness on the web, WeCanRebuildHer.com, and the community that has gathered there is “something that’s good for them”, their supporters and for others in similar situations.

In this presentation, Andrea and Mark will join PodCamp Toronto via live Skype video from Ottawa to share their use of social media as a key tool in Andrea’s strategy to survive and thrive and will offer their top tips for healing and sharing in a digital world.

If you’re going to be in Toronto on the weekend of February 20-21, 2010, we recommend you register for and attend PCTO2010.

I’ll be in the hospital bar

The challenge of having a naturally positive attitude is the tendency to take for granted that things will always be smooth. It can be extremely sobering when you get a shot across the bow to remind you that, particularly where chemotherapy is concerned, you’re tinkering with the complex and delicate systems of the human body.

Today, we recognized that shot.

Even though Andrea’s receiving Neulasta injections (which help stimulate white blood cell production), subjecting herself to practical elements of an alkaline diet, jogging and exercising daily, avoiding (as much as possible) contact with people outside our immediate family, getting plenty of sleep and receiving regular energy treatments, her white blood cell and neutrophil counts have dropped significantly. Thankfully all is well and chemo number three proceeded as scheduled. However, it was a revelation that we may yet face setbacks in Andrea’s chemo program.

It was also a shock to consider what the situation might be like if the above list wasn’t true. Those thoughts rattled Andrea. We actually took a picture of Andrea in an unsettled state and had hoped to use it for this post since it was just as relevant a moment as any of our happy moments are. Unfortunately, it seems my iPhone had different plans as it chewed the photo up and spit it out when we weren’t looking.

This is where having a naturally positive outlook is particularly important.

Andrea and I talked about what the counts mean and we agreed that the counts are high enough and Andrea strong enough that she’s remained healthy to date. We also realized how lucky we are that we’re able to get Neulasta and that Andrea’s commitment to exercise and good health has played a key role in protecting her from even lower counts so far.

I’m reminded of another belief I have which I sometimes forget: celebrate every victory, no matter how small. This simple approach sustains motivation and focus, and keeps away challenges that have the potential to overtake me. With that in mind, I’ll refocus my attention from finishing the sixth treatment as scheduled on April 2, to making sure Andrea stays healthy and can proceed with chemo number four as scheduled.

SMS? Really?

This is a question that comes up occassionally.

Yes. Really. Andrea really SMS’d me to let me know the biopsy results when she received them on October 6. You can see it for yourself in the image of this post.

SMS is just one of the many ways Andrea and I stay connected. On October 6th, it allowed Andrea to keep me up to date in real time as she spoke with her physician.

The sequence happened like this.

I was working in my home office when the phone rang. It was Andrea’s physician. We had been anxiously awaiting the results since the biopsy on September 29. Of course, the doctor wouldn’t tell me the results over the phone. So, I gave her Andrea’s cell number.

That led to the SMS I sent to Andrea at 1:34 p.m. “Dr. M……. calling you right now!!!”

It took a few minutes for Dr. M to make the call. It was 1:55 p.m. when I received the message “It’s cancer”.

Ordinary is the new extraordinary

As part of the process of rationalizing something for myself, I’d like to tell you about a few people we know.

The Ottawa Hospital Cancer Centre and Chemotherapy Clinic have some amazing volunteers. Patricia and Dave, in particular, come to mind. When they greet you, you feel like you’re someone and you’ve arrived someplace you want to be. They happily escort you wherever you need to be and answer any questions you have. They’re just happy to do that for you; never mind that you may be stressed or feeling physically or emotionally crappy. They can turn around your attitude, feelings and outlook. If you ask them, though, Patricia and Dave will tell you they’re “just volunteers” and love helping out.

Most parents in Ottawa know or know of Little Ray. He’s the co-founder of Little Ray’s Reptile Adventure, a reptile zoo in the south end of the city. His collection includes abandoned pets from owners who had no clue what they were getting into, and he has even received wild reptiles that were rescued and in some cases confiscated by the authorities.

Besides his zoo and its amazing demonstrations, parties and eco-education programs, Little Ray is regularly invited into schools, conducts home-based birthday parties and exhibits in fairs all over the place. His passion for animals, education programs and life is completely infectious. Over lunch with Little Ray yesterday, I was caught up in how he can make you excited to learn and enjoy life. If you ask Little Ray, he’s “just living his dream”.

Meanwhile, Little Ray carried on about how inspired he is by our website and our transparency as we share Andrea’s journey to becoming a breast cancer survivor (see Little Ray’s blog post about being inspired by us).

For a good chunk of our journey, many people have remarked to Andrea and me how inspiring we are. Besides Little Ray, I received three emails with that message yesterday. I generally have difficulty understanding and accepting that idea. And then, when I consider how we view Patricia, Dave, Little Ray and many other people in our lives, I realize that ordinary may be the new extraordinary.

Difficult Decisions

Being decisive is hard, especially when new information causes you to constantly revisit, rethink and even reverse your decisions. That’s par for the course when you’re dealing with something like cancer-related surgery.

We’ve had our audio recorders running during a good chunk of our journey. This includes conversations and telephone calls as we considered which of either a lumpectomy or bilateral mastectomy was the best course of action.

It was interesting distilling three hours of recorded conversations to this 10 minute story, and particularly surprising to think this process dates back three months already (this audio was recorded leading up to Andrea’s first surgery, October 26, 2009).

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The Supporter Experience #3: Applause

Today was Andrea’s second chemotherapy session. As always, she was a champ. I sometimes wonder how I would fair in the same situation.

Today, as I watched Andrea’s medicine bags drain I clued in to a celebratory atmosphere just opposite where we were sitting. It was a gathering of nurses making a happy fuss over someone as they were disconnecting all of the tubes; disconnecting for the last time as it turns out. Then there was a procession of nurses clapping and hooting as they followed the patient down the hallway of clinic for what will hopefully be their last visit there.

My focus for chemotherapy is to keep our heads down and power through. If we can keep Andrea healthy, she can remain on schedule and we can listen to the nurses cheer her on as we leave the chemo clinic for the last time on April 2.

The supporter experience #2: sleep

Perhaps my biggest and most consistent struggle since Andrea first discovered the lump in her right breast has been sleep. For a good chunk of September and almost all of October I was relieved if I could get four hours of sleep a night and thrilled if three hours came in one shot.

I did my best to not train my body into that pattern. I was more likely to lie in bed, restless and frustrated — yet still so as not to bother Andrea — than do something entertaining or productive. On the rare occasion I’d read a book or go to my computer and mindlessly surf for a few hours. The fact is, I had so many things on my mind that I wouldn’t remember much of what I did in those waking hours anyway.

Where at one time my sleepless nights were because of my concerns over Andrea’s health, our family and household, being unable to sleep became the ironic additional reason I couldn’t sleep.

And so it was that I would get by each day on a diminishing hours of sleep. Eventually, at the encouragement of my mother and her physician friend, I asked my family doctor for a prescription for Trazadone. I took it for three nights before I gave up on it and let my insomnia run its course.

I think it was mid-November before I was able to get a decent sleep. Since then I’ve also taken the occasional weekend nap knowing the role of sleep for staying healthy and effective for my family. The holidays were particularly nice for that.

Photo: Me, exhausted during a train ride to Quebec City, 2 days after Andrea’s diagnosis.

The supporter experience #1: don’t panic

Don’t Panic. Those are the insightful words that grace the cover of The Hitchhiker’s Guide to the Galaxy, the fictitious guide in the earthly book by Douglas Adams. I’ve tried to live by those words for most of my adult life. When our home was broken into in September 2006; don’t panic. When United Airlines lost our luggage last Christmas; don’t panic. When I discovered I didn’t have my wallet with me when I was at the grocery checkout a couple of months ago; don’t panic.

As the loved one and primary support of someone diagnosed with cancer, don’t panic is a golden rule. Throughout the process you will hear a variety of cancer experiences from people all too willing to share whether you want them to or not, whether they understand the impacts of their stories or not. Surgeons, oncologists, nurses and anaesthetists will use words you’ve never hear before and will talk about side effects and will likely allude to long term impacts from treatments.

You may even have an experience like we had a week after Andrea’s breast cancer diagnosis. Andrea’s dentist found a cyst in her mouth and suggested it be biopsied. Thankfully it turned out to be nothing (Andrea must have bitten the inside of her cheek). However, for four stressful hours, we dealt with the possibility that the cancer wasn’t confined to Andrea’s breast.

Don’t panic.

Being the primary support means you need to be rational and calm. New language, information and ideas need to considered as part of the whole and you need to remain coherent when throwing in the towel seems the logical thing to do. It’s completely okay to be emotional so long as you don’t let your emotions interfere with being an advocate for your partner, communicating with your medical team and making sound decisions.

I’ll talk more about emotions as I share more of my supporter experience.

Thanksgiving in Quebec City

Two days after Andrea was diagnosed with breast cancer, we took the train for a much needed four day vacation in Quebec City. It was Canadian Thanksgiving weekend.

Listen in as Lucy and Bayla order our lunch in French, we share what we’re thankful for and the sounds of street musicians in the heart of Quebec City.

Head shaving party

It was 3 a.m. on the second day of her first chemo cycle and Andrea still couldn’t get to sleep. So she occupied herself with plans for shaving her head before her hair falls out — a certainty with breast cancer chemo. That’s when she pitched her idea to me (I was also awake). Inspired by a cancer blogger who lives in our neighbourhood (See going bald), Andrea suggested we invite a number of our family and friends over for munchies, drinks, cake and the opportunity to be a part of her head shaving experience.

That party happened last night (view photos). And with it, comes the launch of this website, WeCanRebuildHer.com.

We invite you to follow our journey to making Andrea a breast cancer survivor. We’ll blog our experiences and thoughts and share audio, video and photographs of the process — from diagnosis on Oct. 6  to Survivor.

Opening theme prepared by John Meadows. Closing song, Session, by the Robert Farrell Band.

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