What I Learned as a Cancer Caregiver

The following is a recount from a reader of this blog.  Cameron Von St. James found my blog on the internet and asked me to post his account in the hopes of helping others.  I think it is very uplifting.

What I Learned as a Cancer Caregiver  

by Cameron Von St. James

In 2005, I was thrilled to become a father for the first time. Lily was the light of our lives, and my wife, Heather, and I, were enjoying the challenges of being new parents. However, our world was shattered on November 21, 2005. I will never forget how it felt to learn that Heather had malignant pleural mesothelioma, a rare and extremely deadly form of cancer. Suddenly, instead of worrying about what to buy Lily for her first Christmas, we were worried about saving Heather's life.

Heather's world was shattered by her diagnosis, and my life changed completely as I became a caregiver for the first time. The doctor laid out several treatment options, but Heather was too shocked and terrified to answer.  I knew that she needed the best care possible if she were to have any chance of beating this terrible cancer.  Therefore, I told the doctor that we would seek treatment with a renowned mesothelioma specialist in Boston.  Thus began our long and difficult journey to eradicate cancer from our lives.

I was not prepared to become a caregiver to my wife. I loved her and wanted to support her, but the entire experience was overwhelming. I had to work to support us, while also providing constant care for both Heather and Lily. The amount of responsibility on my plate was overwhelming, and I quickly began to crumble under the pressure of it all.

If I could share something with other caregivers, I would emphasize the importance of learning to ask for help. I broke down numerous times because of the weight of my responsibilities. Thankfully, there were several people that stepped up to help in any way possible. I had to learn to rely on these people for help, and I also had to learn that I could not be strong all of the time. I did not want to break down around Heather, but I needed to be able to decompress and express my emotions at other times.  Our loving and generous community gave me the help that I needed, and allowed us to make it through.
It has now been seven years since Heather’s mesothelioma diagnosis, and I am thankful to report that she is cancer free today. Cancer changed all of our lives, but not all of the changes were bad. We each grew and learned about each other and ourselves in the process.  Heather and I are blessed to be able to share our message of help and support to other cancer patients and caregivers.  We hope that by sharing our experiences, we can help them in their own journeys to beat cancer.



And we keep moving on...

CT Scan Results are Good

I'm back at work full time now but on my first week back I got wiped out by the flu that my wife had.  I had to call in sick for two days.  Err...not off to a good start.  But, after a restful weekend, I feel much better.

A couple of weeks  ago I had a follow-up appointment to a Cat Scan of my chest and pelvis area.  This is all part of my five year health monitoring to ensure the cancer does not come back.  So, the results are good.  All healthy in the scanned areas and blood results are good.  I will now continue with follow-ups like that for the next five years.

I can now start playing again since the feeling has returned in my fingers.  I suck.

I have an 87% chance of surviving five years which is just the cancer term for surviving forever.  After five years they consider you cured so I'll take those odds as good odds.

Yep, one year ago I started down this unknown road of chemo/radiation every day for five weeks.

Then I rested up for surgery.  The surgery was big.  It took me two months after the surgery to be able to tie my own shoes.

Then I started adjuvant chemotherapy for six months.  I wasn't able to get out of bed for the first five days.  The chemotherapy was tiring and made me feel weird.  It had a series of strange side effects that I didn't escape until I finished it in late October.

Now I'm back at work and I don't have anywhere near the energy I had before I started down this road.  I've been napping quite a bit after my workdays and I've taken measures at work to minimize exhaustive activity. Aside from the flu, that's helped me quite a bit.

I was told it would take a year to a year and a half to regain my strength and now I'm starting to believe them.

I'm weak, my hair has thinned out dramatically but my waistband has gone the other way, I'm broke, devoid of holiday time and I will owe a lot in income tax coming up due to my reduced pay in 2012 being dished out sans tax removal.

In other words, I'm just happy to be here.  Thanks for reading.

END BLOG

Happy New Year (and belated Merry Christmas...)!!

2012 Santa with Maggie and Kate.  They were also happy with the 30 cms of snow.

 

Things have been going well with me and my return to work.  A top notch group of people to work with and taking a few days off at Christmas hasn't been all that bad either.  The last few days I have been feeling sore throat-free (finally) which is more than what I can say for the last six weeks.

In January I return to five days a week and full time by late January.  That's a good thing for me as I can continue with earning holidays (I have none), paying back my five weeks of borrowed sick days and actually saving for retirement and the kids' RESPs again.  Cancer sucks holidays and money out of you big time but if you survive it, you can rebuild it all.

Speaking of rebuilding it, 2012 has been a year of ups and downs.  One thing was my weight.  I porked up for radiation and chemo and didn't lose a pound.  I gained 10.  I had surgery  and lost 10 lbs.  I recovered from surgery and started chemo.  I lost another 10.  I'm all over the map.  Now I'm Fatty Patty (as Erinn's girlfriend will surely start calling me) since I've packed on 25 lbs.  I should be proud to be a cancer patient that actually came out heavier at the other end of the treatment.  I got Fat Pants for my birthday a few weeks ago.  I love them.  Oh well, Christmas is not the time to start dieting.

But I think January 1st is.

Merry Christmas and Happy New Year to everyone.

Back to Work!

Erinn's birthday was a couple of weeks ago.  For her birthday, I've returned to work.  It's great to be getting back to what a normal person does.  I never thought I'd want to go back to work but this is no way to take time off.  It also helps that I work with a fantastic group of people and they're a great pleasure to see again.

It's been a full year since this cancer ordeal began.  The big unknowns are all behind me.  The testing I ran through in November and December, the treatment plan laid out in late December and the fright of what lie ahead.  I was naive about colorectal cancer as I felt assured it couldn't kill me but I was also worried about what I might lose during the treatment process.  Well, Erinn's been following about three colorectal cancer blogs since we started down this path.  Unfortunately, one of the bloggers died a couple of weeks ago.  She was 35 with two young kids.  One of the other blogs, Doug 2.0, was a blog I started to read this summer on Erinn's recommendation.  He is similar to myself in that he's 40 years old, a lawyer (not me, but I'm a professional engineer so, yes, I can get sued by a lawyer) and he's very active.  Unfortunately, where I started was his entry was that a good friend from his colorectal cancer group died.  She was 40.

You see, the cancer can spread.  It's something I didn't realize.  Colorectal cancer in itself is treatable but if it spreads then it can be problematic.  Or a death sentence. I worry about a recurrence but I'll take assurance in that fact that if the cancer recurs in ten years, then medicine will be that much more advanced.

I spoke to a medical doctor last night.  I started road racing motorcycles only a couple of years before him.  Like myself, he's done a decade of fun weekends at the track and thrown in some national competition in there as well.  Also, like me, he's quitting now after some bad events happened at the track.  For me, I was administering first aid to someone at the track and it didn't end well.  I went home and sold everything.  A few months later I got cancer.

This doctor told me that risk is everywhere and many people die in mundane things like traffic accidents.  True, but racetrack involvement elevates risk and exposure to injury.  Of course, sometimes you eliminate that risk and put that phase of your life behind you and then you get cancer.  Getting cancer from cycling daily to work, eating a vegetarian diet, not smoking or drinking and eating lots of chocolate.

We're both glad we raced.

Now I'm going dirt biking.

Kate and Maggie are really excited about next summer.  So am I.

Chemo DUN!!!!!

I'm posing with Kate and Maggie all bundled up for Halloween.

Ahh, I just took my last chemo pills this morning.  I had asked the doctor if I could delay my last chemo by one week in an attempt to delay the side effects and the good Doctor Goodwin agreed (not to be confused with 7 time MotoGP motorcycle champion Valentino Rossi, simply known as THE Doctor).  It has worked. And, now that my chemo is done, my feet are just now starting to get sore.  Who cares, I'm done!

The last few weeks have gone well enough.  Before the weather cooled, I had a couple of weeks of pedalling 20 kms in the morning three times a week.  I've now moved indoors and I'm keeping up the cardio on the elliptical in the basement.  I'm afraid to try any weights as I'm overly cautious about ripping open my abdomen since I already have a hole in it.  That's what a hernia is and I have a large version.  The stoma nurses cautioned me on that so I have clear images of things going bad.  However, I'm going to start the weights soon at a  gentle pace cause it looks like next summer is my chance to finally start wakeboarding at the cottage.  My dad just bought a used powerboat and it came with a wakeboard and tubes for the kids.  Time to go back to waterskiing and finally try wakeboarding!

Sure, Katie's excited for dirt biking next summer but Maggie's really wound up!!

Nearing the End

I'm into my week off between pills.  On Wednesday, I'll start my last round of chemo pills.  This lowered dose got off to a good start.  I felt okay on Chemo 6 but the day after Chemo 6 ended I started feeling side effects.  I couldn't walk due to chemo pain in my feet.

And, oddly enough, I had bad effects near the end of my 14 days of pills on Chemo 7.  In fact, it continued for a few days after I stopped the chemo.  We had a great fall weekend at the cottage and I winterized it but the pain in my feet was so bad on the Sunday that I had to, once again, watch Erinn do all the cleaning and packing up while I lounged on the couch with my feet elevated.  I was okay to drive home but I couldn't walk or stand up once home so Erinn unpacked the car and put the kids to bed while I watched TV.  Hmm...maybe a sign of our life to come.  Except for the blazing pain in my feet, I could live with it.  Maybe I'll be faking it in the months and years ahead.

So, on Wednesday I see two doctors and I also have a Back to Work plan to get their approval on.  Funny, I haven't been harassed by my disability agent.  In fact, quite the opposite.  She ignores me.  I have called her about nine times in the last two weeks and I left about six messages for her to call me back.  By message three I just became verbose and spelled out my whole story since May about chemo problems and in subsequent messages I outlined when I want to go back to work and how long the transition to full time should be.  She finally e-mailed me the plan a few days ago.  I shouldn't be surprised.  She's only called me twice since January and I've left her about fifteen voicemails that she never responds to.  But now I finally have her e-mail address.  She still hasn't replied to my written questions but whatever.  Life will go on.  I guess I'm not the taxi driver with a sore neck on disability. 

Last night I was up till 4am with diarrhea.  Again.  I feel hung over this morning due to the lack of sleep.  It usually happens about once a week because of the chemo.  Last night there wasn't so much pain but usually when it happens, such as last week when I was sleeping peacefully, I get jarred awake by a searing, burning pain on my stomach.  Yes, ON my stomach.  Diarrhea often burns my skin so as it exits through my stoma I get an acid burn and it hurts like a motherf$#@&r.  I know diarrhea will be pretty rare once I'm done chemo but for now it's been pretty much every week since I started in May.  Half a year of fun.

What do you do when the KLR won't run?  Take the VFR.  I had planned on riding the K&P Trail near Calabogie all summer with a friend but my health sucked.  My feet were still in bad pain from the chemo but I was determined to go.  I took two Tylenols and headed out.  It actually ended up being a great day and sitting on the bike was fine.  Getting up and walking around hurt.  See Mom, motorcycles can be good for you!

Gerry demonstrates how to ride this without gravel tires or chemo pills.

Gerry and I did the K&P Trail just a few days ago.  As we left Ottawa, we stopped in to see a friend.  This shop owner used to sponsor me for motorcycle road racing for many years but I haven't seen him at all in my cancer year.  His healthy wife had a stroke.  They're both my age.  About 40 years old and fit with two young kids.  She just happened to walk out of the house when we were chatting with her husband.  It was great to see them both and she's on the mend.  She just got her driver's license back a few weeks ago.    Strange how things can show up and throw curve balls into life.

Homeward Bound!

Things have been good the last two weeks.  Yesterday I had an appointment with my Chemo doctor and she confirmed that I'll just stay on this lowered dose of Xeloda for my last two treatments.  This morning I downed the pills for the start of Chemo 7.  I took them on my bicycle ride as I picked them up at Shopper's Drug Mart on the start of a 20 km pedal this morning.  It felt good to be out as I've been lazy and not exercising but I vow to change that despite the cold, windy pedal this morning.  I can do that more often and I'll try for every second day now that my hands and feet don't hurt so much from the chemo.

So now, I have just over a month and a half left then I have to recover for a few weeks before I get booster shots to return to work.  I'm looking forward to returning to work part time and I hope it's in mid to late November.

The new normal is becoming okay.  I've been wearing slippers in the house all summer to make it softer on my painful feet.  I know the pain and numbness in my feet and hands will be a thing of the past once I stop the chemo and dealing with my colostomy has been frustrating at times but, on the whole, it's easy to forget I have one.  I just wish I didn't have one.  That's a permanent souvenir of this cancer but in view of the fact that a lot of people die of cancer, I'll consider myself lucky.

I keep getting e-mails from the Colorectal Cancer Support Group.  I only went to one meeting.  I didn't find it very helpful or cheery.  I was by far the youngest person there.  I may attend in the future but I think I'd rather go to Photography Club instead.  Or rewatch all the Rocky movies.  The obituaries from this Support Group have been flying in regularly and the one last week was for a 47 year old Colorectal patient.  Yikes.  I didn't meet any of the people who have passed away but it's a rip-off to bite the dust well before your time.  Lord knows I've raced motorcycles enough (eleven years) to make everyone around me think that I'll meet my maker at warp speed on the racetrack but I see a cancer recurrence as the big risk.  Plus, I've sold my racebike just last summer.  I told my wife I want to be the 2014 American Motorcross Champion.  She told me that as soon as I can beat one of those 12 year olds in a foot race then she'll buy me a dirt bike.  Hmm, so there's hope...

Ahh, the Orleans Sinkhole.  I have to document this...

On Sept 5th, 2012 a hole appeared in Highway 174 eastbound that feeds Orleans.  It swallowed this car and shut down the entire eastbound highway until Monday, Sept 17th.  That's the main artery that feeds Orleans.  When I was twelve, my buddy Mike and I walked about 2 kms inside the trunk sewer line that swallowed this car as we slithered behind the outlet grating at the Ottawa River.  I was tempted to return and liberate the battery and tires from this car since they were removing the car in pieces.  Mike now lives six doors down from me but I figured it would be no fun as adults and I'd probably catch scurvy in the sewer or we'd both get stuck trying to squeeze behind the grating as portly grown men and die a very undignified death.