Blinging Out my Legacy

Occasionally crafty mothering.
During the Sochi Olympics, I pulled out a crappy generic race medal I had and transformed it into a faux-Olympic medal for Merrick's kickass "Dress Like an Olympian Day" outfit I created for school. Rarely do I resemble one of those overachieving crafty moms, but if it involves a special outfit, I'm like a member of the A-Team for costume creators. I may fail him as the perfect mother he expects, but I will never fail him when it comes to dressing up in character.

Anyway, I'm not a huge runner of races, primarily because getting up super early to run with masses of people during typically cold hours lacks appeal to me. Especially considering I have to pay, use port-a-potty and they don't have gluten-free beer waiting for me at the end. But I have run a few, and I do have some medals stuffed away in a drawer.

As Merrick was admiring the medal I planned to use, he said: "Mom, you haven't run any races since you got sick, have you?"

Of course I hadn't. I hadn't run much at all. To think that there was that dividing line in his little mind - the before and after when it comes to my cancer. I realized then what that medal meant to a 6-year-old; to my 6-year-old, and it ignited a small fire in me.

And I must get morbid for a few paragraphs, so bear with me. As I spent those 5 uninterrupted minutes reflecting on race medals and Merrick, I thought about the powerful message they send to that innocent little kid. I could see he had a clear division in his head of before and after I got sick. Before I was sick I ran with him in a jogger, ran races and "won" these amazing medals. Now I'm just an uninspiring gym rat who clearly doesn't impress small children on her Spin bike. And my ability to stay on the elliptical for an entire hour of The Real Housewives of any city means nothing to him.

My legacy was now this tangible thing (race medals) that I think can be a future reminder to him of what his mom was capable of despite being sick.

What if I'm not here in 10 years when he's struggling through those teenage years? What if I can provide him with these shinny objects to look at and remind him of the small successes his mom had despite the evil opposition?

So I've decided to change my tune (and my morning attitude) and run for that race bling; to drink my coffee and go work on the physical legacy I can leave for him if the need arises. I want to give him a visual reminder of what I was able to do, so he can always know that you can overcome despite adversity - even if I'm not here to tell him.

And it helps that I feel even slightly victorious over cancer when I can use those lungs for something mighty, despite what's growing inside of them.

I've got 2 5Ks in the next few weeks. The upcoming Get Your Rear in Gear, and a virtual 5K that plucks at my geeky heart strings AND helps the cancer cause. And I think the race bling will make his nerdy little heart happy. Not sure what the summer will hold as I dive deep into the potent stuff again, but I'm on a mission that hopefully will never achieve its purpose.
Dress like an Olympian he did.


Caregiving Dads

Last summer, a week happened in our lives that lit a small fire in Kyle. A seed was created, but he just wasn't sure where to plant it. The simple phrase,"How can I serve you?" uttered by a friend turned out to be a spark that festered inside for close to a year now. He saw love in action. It is a story Kyle has shared when the opportunity presented itself; part of a passion stirring in him to do something more - to do as has been done for him.

In what started as a friend-of-a-friend connection upon his arrival in Minneapolis, Kyle met a fellow dad who was struggling to wear those many hats you're forced to wear when your wife has cancer. And as men can be known to do (or not do), they wear the hats without complaining, or without releasing the necessary burden that comes when your wife is very sick. I've written about the caregiver roll Kyle plays in our own family, and he's obviously not alone.

Then the opportunity to plant that seed emerged, a friendship was formed, a purpose was created and a group emerged.

Most people don't pay attention to the flight attendant giving safety instructions before a flight. We've heard it so many times and assume it will be second nature to us in the event of that crash landing.
And yet here we are on that plane, with the oxygen masks dangling before us and our children (or spouse/partner/parent) are sitting next to us.  

Did you remember to put the mask on yourself before putting it on your children like they told you? Have you ever thought about why they ask you to do it in that order?
As the caregiver, we have a lot on our shoulders. Add raising kids to the mix and we stand out as a very rare club that no one should ever have no join. We have that added responsibility of being super parents, and keeping life as normal as possible while our helpers are too sick to get out of bed. And in the midst of maintaining our careers and our families, we often forget to maintain ourselves.
We come together to share experiences that we can't share with anyone else.  We're not afraid to admit that we're struggling and that being a caregiver can be grueling. As group, we exist to serve caregivers who often forget to take care of themselves. Through this service, we hope to help each other become better leaders, better husbands, better partners, and better dads.  And our first priority is to get better at taking care of ourselves!

An impression was left, an impact was made, and the momentum was started.

Know a dad in the Twin Cities area who might benefit from the company of other men in the caregiver role? Kyle's new group might be just for those who rarely ask for help, but need it the most. 


4 Weeks and Clear Sidewalks

It's less than 4 weeks until Team Colon Cancer Chick hits the pavement for the Twin Cities Get Your Rear in Gear 5K.

And this chick and her 40 million breakable parts are finally allowed outside to run on those snow and ice-free sidewalks and trails.

It's time to hit the road and start getting these lungs breathing in something other than the musk of sweaty men and stale gym air. I gave my little lung tumors a run for their money (all puns intended) last weekend. And once treatment wraps ups this week and I can go back to a life without nausea drug-induced naps, I'll be out on this street again next weekend.

Think you're too young to join the team? Sign up as a youth participant.

Think you're too far away to join the team? Sign up as a virtual runner.

Think you're too out of shape? Sign up as a walker.

Think you're just not ready to leave your house? Make a team donation.


Six Rounds of Summer

I blurted out my plans for more of that full-on-chemo in my last blog, and left it at that. Such a tease!

And let me assure you that it didn't go unnoticed, so I guess I should elaborate.

I have been on continuous chemo for the last year, and this maintenance chemo hasn't come close to damaging my cancer cells and my body in that special way a full dose does. The one thing missing from the party, as so giftedly illustrated in my diagram, is that digestive-tract destroying drug irinotecan (The I in FOLFIRI). Holy GI tract, did I not miss it.

Since taking irinotecan off the table during the last 32 weeks, I've managed to grow some hair, heal my gut, have a normal white blood cell count and (almost) gain back the 20 pounds I lost. All were well needed by the time I wrapped that up last summer.

After my most recent CT scan and some thorough discussion with my doctor, I got the impression that all options were on the table, and he was content to keep on doing what I'm doing. The problem is that I'm not as comfortable with his definition of "stable" as he is, so to keep on keeping on just doesn't sit well will me. It seems a little passive. Sitting around "maintaining" until things grow too big for comfort or start impacting my quality of life is not cool.

Last summer, after my first 6 rounds of FOLFIRI, those little tumors should have been on the cover of People Magazine because they were half their size! There were blatant results and I was inspired to keep on pressing on for the next 6. In the mean time, by body (and all the above mentioned issues) started to up their game and I suffered to the bitter end.

After those last 6 rounds and my next CT scan, I'll admit I was disappointed to see everything remain the same. I thought I was well on my way to victory after leading at halftime. So why did my team fall apart in the second half?

My current doctor surmised that my body was just too weak and worn down by the chemo for it to be effective. It seemed I spent more time and effort combating my super low blood counts than actually fighting cancer. I've admitted time and time again to being a weak and weepy mess by the second half, so perhaps my physical and mental frailness made the chemo ineffective? Who knows.

But what we do know is that it did work and worked well for the first 6 rounds.

So that's my approach again this summer. Just 6 rounds. Just enough for my body to retain some hair, some weight and some normal bathroom habits.

The idea behind maintenance chemo is to give the body a break and let it recover while "maintaining" tumors where they are. And that's what I've done. For some, this maintenance can only last long enough for they blood counts to rise and they body to rest. But for me, I've been able to do it these last 7 months with relative stability, and if my doctor had his way, continue doing it for many months to come.

And why this summer? As sad as it is to say, it will be much easier to deal with it while Merrick is out of school. As unfair as it sounds, having him home to help me will be a big deal, and not having to get up to go to the bus stop will help. I'm not expecting him to fill in for me, but he can help keep me on the couch for all the superficial tasks that a mom inevitably gets called to do the minute she sits down. And I think I've become a seasoned pro at this whole feeling-sick-all-the-time-yet-still-remaining-mildly-functional-while-wearing-mascara-and-lip-gloss. It won't be easy, but I can only hope that it will be worth it.