And that’s just off the top of your head

We’ve learned the hard way there are people who have no idea that what they say to cancer patients and their support systems is inappropriate. Andrea published a brilliant post about this, I See Dread, People, and I’d like to offer a refresher with five helpful hints of my own.

AT TIME OF DIAGNOSIS: Upon learning about the diagnosis, be supportive and keep your own horror stories about the disease (or any other less than positive stories) to yourself.

HELP: If you offer help, be specific — for example, ask when you can have the kids over for a play date or offer to send a meal over on a specific day (bonus: ask about any food alergies, nutritional needs and dietary restrictions).

DURING TREATMENT: Check in during the treatment process and renew (or offer new) specific offers of help. Make it known you’re thinking about the person and their family.

AT MILESTONES: When a milestone has been achieved, be a part of the moment by celebrating with the person and their family. Something like, “Congratulations!” is a very good start. You can freestyle that by acknowledging the difficult journey it’s been for the person to get to that point and how thrilled you are for the person that they’ve made it to this milestone. “Be there.”

SHOW GENUINE INTEREST: If you know the person has a blog, follow it. It’s a great place to stay up to date and even leave messages of support and positive thoughts at regular intervals. It’s also a great tool to know when help is needed the most. If you know the person has a blog, catch up before you contact them. It shows you care and their health and journey is important to you.

This just in…

The spring/summer edition of the Ottawa Regional Cancer Foundation‘s magazine, Courage, is now available. It features an article Andrea was invited to contribute about the head shaving party we had for her in December (page 24).

If you’re new to this site, having discovered it in Courage, welcome! We hope you make your voice heard by sharing your thoughts and experiences as comments on our blog.

By the way… this isn’t the first time Andrea and our WeCanRebuildHer.com website have been in the news. Andrea contributed to the Ottawa Citizen‘s Miracles on Ice edition of the Saturday Observer (Feb. 6, 2010, section B) with a piece about skating on the Rideau Canal during chemo (page B3).

Medical body art

A few months before I met Andrea, I had plans to get a tattoo. I worked with an artist to come up with a design I liked though circumstances prevented me from actually getting the tattoo. Over the years I’ve often talked about Andrea and myself getting matching tattoos to represent our family. Andrea was never interested and joked that I could get one during my mid-life crisis.

I turn 40 next month. I haven’t gotten a tattoo nor do I have any plans to get one. Today, Andrea entered the world of body art when she got five tattoos. Wow! Talk about going the other direction.

Andrea’s five blue pinpoint-sized tattoos are part of a complicated laser-alignment procedure in preparation for her radiation treatments. The alignment ensures that the radiation can be properly targeted during each of the thirty treatments while limiting exposure of Andrea’s lungs and ribs to high intensity x-rays. Apparently a large screaming eagle wouldn’t have been appropriate.

DINNER OUT

We went out for dinner as a family for the first time since November, tonight. We met our author/illustrator friend Lee Edward Fodi at The Wild Oat — yet another in an expected long series of life celebrations now that Andrea’s recovered from her chemo.

A celebratory night out

Out of concern for Andrea’s health, particularly due to immune compromise during Andrea’s chemo, we haven’t gone out for dinner in about five months. That means Christmas, our anniversary, Valentine’s Day, etc… they were all at-home celebrations.

Tonight, that changed.

My parents took us to celebrate our 11th wedding anniversary and the end of Andrea’s chemo. We had a fabulous dinner at Saint-O in Ottawa’s east end. It was a meal and celebration worth the wait, and the first of what I expect to be a lifetime of celebrations.

It was particularly fitting to celebrate with my parents. They’ve been nothing short of amazing to us since Andrea’s diagnosis. They canceled a winter in Florida and kept themselves available to us at all times. The list of things they’ve done for us is long and impressive. Thank you, so much, Mom and Dad!

It felt great to be at a restaurant with Andrea (and my parents). I’ll never understand how Andrea soldiered through chemo the way she did. I’m amazingly proud of and inspired by her.

Stories about real people

I’m working on a project in my day job for which I’m looking to familiarize myself with amazing people-cancer stories — true milestones in the story about people and cancer from the past 30 years that have the same impact as the story of Terry Fox.

So, I posted the question to Twitter earlier today, “Besides Terry Fox, what milestone people-cancer stories do you recall from the last 30 years?”

Linda Mills replied with this amazing story about Alex’s Lemonade Stand Foundation

Put our heads down and power through

Now that chemo’s over and Andrea’s nearly completed her full recovery cycle (which means she’s about a week away from being able to be out in public without an elevated risk to her health), we can start thinking about the next stage of her cancer treatment… radiation.

We love Andrea’s radio-oncologist. He’s an incredibly nice and patient man. We experienced a remarkable trait of his during our consult with him last week; even though he may know where we’re going with a particular thought or question, he waits until we’ve finished speaking before responding. He doesn’t jump to conclusions or feel it necessary to cut short our thoughts.

Andrea will have a CT scan in the next few weeks. During that appointment, a technician will mark the two locations at which the radiation treatment will be directed. This ensures the treatment is always directed at the same spot.

Beginning in May, Andrea will have radiation treatments each weekday for six weeks. Despite the frequency and duration, radiation seems much less scary to me than did chemo. There are no meds, and no physically- or emotionally-crippling side effects.

We’ve been told to expect Andrea to feel fatigued over the course of the treatment as her body works to regenerate cells that are being killed off each day (just as it got the regeneration process underway from the previous round). We’ve also been told to expect that Andrea will present sunburn-like skin irritations and discolouration beginning in the treatment area around week four of the program.

After she powers through radiation, Andrea will begin hormone therapy. Given what we’ve been through, that’s not as far off in the future as it sounds.

Ring that Bell – a documentary celebrating Andrea’s last chemo

We created a short documentary video celebrating Andrea’s last fast track bloodwork appointment and breast cancer chemotherapy treatment. The video includes reflections on the six months that got us where we are, the chemo process and the jarring “klunk” of The Bell of Hope.

This is not an April Fool

In December, 18 weeks seemed like an eternity. Now it’s April and we increasingly talk about stages — particularly the most scary stages — of our journey in the past tense.

Cancer treatment comes with a lot of stresses, uncertainties and decisions which make any period in the future a scary place to be heading. When I think about my concerns waiting for Andrea’s MRI and then for the results, I’m instantly transported to where my mind was and the feelings I was experiencing at that time. The same is true of her surgery and awaiting the pathology results which we repeated for a second surgery. There was also the cardiac scan and bone scan.

Chemo has always been the beast that scared me the most. Today, chemo will deliver its last strike and in a few weeks we’ll be able to speak about this stage in the past tense.

I think I’ll celebrate with a big ice cream.

Welcome spring

About the only thing that crossed my mind about this spring in September was the sickening feeling of a new cycle of seasons without Andrea. It was the period of limbo between Andrea discovering the lump on August 30 and when we received the diagnosis on October 6 and I had very secular knowledge of cancer at the time, not having learned that breast cancer has a significant survival rate (85-90% after five years).

The mysterious lump in her right breast caused daymares, sleepless nights and the occasional emotional breakdown. I oscillated between hope and despair, regularly unable to shake the fear of impending loneliness.

After only two days, this spring is already the most invigorating and rewarding one I’ve ever experienced. It means even more to me than ever to wake up to the sound of birds and the sight of buds on the trees, the feeling of fresh air and the realization that we’re almost through the worst part of Andrea’s treatment. Most importantly, I’m enjoying the amplified feeling of gratitude that Andrea’s so strong and healthy, and more beautiful than ever. We’re going to grow old together.

Welcome spring. I’m happy to reconnect with you.

For whom the bell will toll

When we first learned that chemo was a certainty as part of Andrea’s breast cancer treatment program, it quickly became the beast I feared — more so than the three surgeries Andrea had and the radiation and hormone therapy that still lie ahead. The fear kept me up at night for weeks.

It seems almost impossible now to believe that Andrea has only one more round of chemotherapy to go. It feels in many ways as though we’re about to slay the beast with a final lunge.

Which brings us to the parade and the bell of hope.

We first learned about the parade during Andrea’s second chemo. We observed a small group of nurses fussing over a seated chemo patient opposite Andrea. When the patient stood up and started walking away, the nurses fell in behind and clapped as the patient made his final journey out of the chemo clinic. It was an emotionally uplifting moment.

To date, however, we have not heard the ringing of the bell of hope, an honour afforded to chemo patients who have completed all of their chemo treatments.

The bell hangs on the wall above an embroidered poem by a cancer survivor. It’s a poem of fear, love, strength and hope. It’s inspiring, as is the idea of ringing the bell. Which makes me wonder why we’ve heard a few parades and never the bell.

When Andrea gets up to leave the chemo clinic for the last time in the afternoon of April 1, I want everyone to hear that bell. To me, the bell isn’t just about Andrea soldiering through one of the most difficult physical and emotional beatings medicine can throw at a person, it’s about honouring everyone who’s been through this process and thanking the loved ones and support networks that stand by them. It’s about celebrating the courage and strength of the patient.

There’s still the potential of a rough recovery from this round, though we’re hopeful that a new side-effects management plan will make the recovery process for this round better than the last. Then, in three week’s time, that bell will sing its song for the chemotherapy unit and everyone in it. It will be sweet music and I’ll be there with every piece of technology I can carry to capture the moment, preserve it and share it.

And if I’m allowed to ring the bell as a supporter, every fibre of my being will go into ringing that bell for everyone who has been and will be through this process — the patients, loved ones, friends and the amazing volunteers, pharmacists and nurses.

I just hope the anticipation doesn’t keep me up at night.

CANCER to fight cancer

I’ve been meaning to do this post for the last few days. Alas, it took being alone in a hotel room in Calgary to finally get around to making good on the idea.

If you walk into our local Kardish bulk and health food store, chances are you’ll be greeted by Ryan, a young staff member who’s immersed himself in learning about healthy eating and the medicinal value of various natural foods, spices and supplements. His greetings are chipper and his service is enthusiastic, usually coming with a detailed explanation of how I happened to select the best version of the product I’m purchasing.

In my most recent visit, Ryan told me about his cancer fighting acronym — CANCER.

  • C – vitamin C
  • A – beta carotene (pro-vitamin A)
  • N – niacin (vitamin B3)
  • C – chlorophyll
  • E – pancreatic enzymes
  • R – red clover (and other red veggies including beets)

Ryan explained that a cancer fighting diet includes all of the above and he plans to include this and other advice in a book he hopes to write — a book that will include recipes for healthy smoothies.

You can follow Ryan’s blog about healthy eating, inspiration and his new bachelor pad at ryansleigh.com.

Virtually reconnecting

Under normal circumstances, Andrea and I would be in Toronto this weekend to attend the fourth PodCamp Toronto (PCTO2010), a social media “unconference”. It’s one of two annual events we make a point of being a part of at which we reconnect with longtime social media friends, make new ones and get exposed to new ideas about connecting and engaging with people online.

These are not normal circumstances.

Andrea underwent her fourth chemo treatment yesterday. That’s right! We’re two-thirds through her chemo program. By the way, she’s doing amazingly well. Throughout most of this process, Andrea has exercised, walked, skated, baked, cooked and even organized our house. I thank my lucky stars each day that she’s doing so well.

It’s difficult for us that we can’t be with our friends or our daughters this weekend. We really need this time to recover from chemo, rest and take care of ourselves. At the same time, it’s nice that the PCTO speaking sessions and panels are all live streamed on the Internet. Andrea and I have been watching the sessions and even participating by exchanging Twitter messages with our friends at the conference.

Something that’s particularly special is our friend Daniele Rossi has been running around collecting good wishes for Andrea and posting them online under the name JustOneMoreVibe (I love it!). It’s really nice to hear our friends’ voices even if we can’t be there with them.

If only we could virtually be at the social events, too.

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.

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.

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.