Tag Archives: Anchorage

Lost Lake Series: Surviving, Living, and Thriving with CF

Lost Lake Banner

When I decided to help fundraise for Cystic Fibrosis research through the Lost Lake Run, it was important to me to match some faces with the cause.  It’s one thing to raise money for a virtual cause, but quite a different experience to raise money for real people with lives, families, struggles, and goals.  One name that kept popping up in the Alaska CF sphere through my research was Sabrina Smith Walker, a local Anchorage runner who is both living with CF and active in the cause for spreading awareness as well as fundraising.  I asked her a few questions so she could tell her story about living with CF.

Donations to my Lost Lake Fundraiser are accepted here.

Donations to Sabrina’s Lost Lake Fundraiser are accepted here.

Vote to put Sabrina on the cover of Runner’s World magazine here!

 

Sabrina Smith Walker -  Cover model in the making!
Sabrina Smith Walker –
Cover model in the making!

How old were you when you were diagnosed? 

I was 4 years old when I was diagnosed, but I was born with Cystic Fibrosis. 

What was it like to grow up with CF? 

I was young when I was diagnosed with CF so I really didn’t know any different. I have memories of Dr’s visits. I remember my first hospitalization and trying to run away from the Dr. when he was trying to give me my first IV. I had an IV infiltrate during my first hospitalization and it left a scar on my left hand that I still have today. I have to take daily enzymes (5 with meals and 4 with snacks) to help me digest my food. When learning to swallow pills my parents would empty the pill contents into apple sauce and I would eat the apple sauce. 

I really didn’t know any different and I didn’t understand that I was following routines that were not normal to others until I got older. In elementary school, I would go to the nurse every day to do my nebulizers and receive postural drainage (a form of airway clearance).

Did you feel like you were different than other kids, or just a normal kid with some extra things to deal with from day to day? 

I didn’t understand I was different until I was older and realized that not everyone missed weeks of school for hospitalizations and not everyone took pills when they ate. 

In middle school I felt ashamed and embarrassed because it made me different, but I still ran x-country running and track and played volleyball. 

In high school I never mentioned my CF because I didn’t want to be seen as someone with limitations, I ran x-country and track. I could run a 6:05 mile in high school! 

I never felt normal because I was going to the Dr fairly often and I had to make room for all of my nebulizer treatments and airway clearance which took 2-3 hours every day. On top of it I wanted to hang out with friends and I competed in sports. I never made excuses for being tired and I really wanted to lead a “normal” life like all of my friends. 

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What are your interests now, and does CF create any limitations or opportunities for you?

As an adult with CF, I have learned a lot about myself as a person. I run and work out to stay healthy, I am accountable for my health. I have to be compliant with my medicines. This is my life and I am responsible for my health. 

I enjoy reading, hiking, traveling, I enjoy every moment with my husband and our two miniature dachshunds, I also cherish my friends and family. We have also been enjoying more bike rides because we bought a little trailer that our dachshunds can sit in and we tow them behind us!

This year I would like to learn how to ski.  

I would like to say that I would never let CF get in the way of my dreams or aspirations. I don’t ever want to make excuses for myself and say that I can’t do something because of CF. I can’t help the Dr’s appointments or the hospitalizations, but I can try my hardest to keep the hospitalization from happening. 

I went to college in Denver and received my bachelors in Elementary Education. I decided not to pursue that career because it was very hard to be around little kids who are sick all the time. I was always having lung infections and my last hospitalization was in 2011 when I was student teaching. 

How has running affected different aspects of your life and your management of CF?

Running is what keeps me alive! There is no better form of airway clearance for me. It gets the mucus moving and I can clear it out of my lungs. If I go for a 3 or 4 day break of no running or some form of exercise I can feel the difference in my lungs. The mucus builds up and it’s hard to breathe. I definitely huff and puff and cough junk up every time I run. 

It can be hard to find time to run because I work a full time job. The longer the race the more time is needed to train. I like to sign up for races because it gives me a goal to work towards and it holds me accountable for training. But I believe without running I would not be as healthy as I am so I make time to fit it in my schedule. 

How would you rate community awareness of CF, and how would increased awareness impact you? 

I would say that community awareness is so-so in Alaska. There are walks, garage sales, Shoot for the Cure, Lost Lake and probably other ways that bring the community together in Alaska to benefit Cystic Fibrosis. Those that personally know someone with Cystic Fibrosis are more inclined to participate in a CF related event. But if you asked most people who are running Lost Lake, they may not actually know what CF is and how much it affects a person who has it. 

More awareness could bring more fundraising opportunities to the table. The more fundraising and awareness that is available the closer we get to a cure. New and innovative medicines are made possible through donations.

What else would you like people to know about you and/or CF? 

I am 28 years old, I have CF and I am also a cancer survivor. I have been in remission from Non-Hodgkins Lymphoma for almost 9 years! I went through 4 months of CHOP-R chemotherapy and 1 month of radiation! 

I am grateful for each and every day that I am here on this earth!

A big thanks to Sabrina for sharing her story!  I’m so excited to be running Lost Lake next month in beautiful Seward, Alaska, and honored to be contributing to this worthy cause.  The outlook and quality of life for those living with CF is better every year thanks to increased awareness and fundraising efforts.  Please consider donating today!

Donations to my Lost Lake Fundraiser are accepted here.

Donations to Sabrina’s Lost Lake Fundraiser are accepted here.

Vote to put Sabrina on the cover of Runner’s World magazine here!

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Alaskan Winter Survival: Mission Almost Complete

Current season: Spring

Current conditions: Overcast, lightly snowing, 30* F.  Not very spring-like.

Current backyard view.
Current backyard view.

According to the calendar, we’ve officially survived our first winter in Alaska.  In recent weeks, we’ve had beautiful sunny days that last until after 9pm.  Many days have reached above 40*F, and the bears will be waking up soon.  Most of this is likely a tease, though.  Last year, the final snow day was May 18th, which gives us over a month to go until spring really breaks through.

Regardless, the worst of winter is behind us, and I feel triumphant about making it through unscathed and unshaken.  I didn’t do everything I wanted to over the winter, but I’m pretty sure I’ll get another chance.  Here is our winter overview:

Fireworks and carnival @ Fur Rondy
Fireworks @ Fur Rondy, February
Playing in the backyard
Playing in the backyard, December
Early winter sunset
Early winter sunset, December
Taekwondo lessons
Taekwondo lessons, December
Bowling.  Lots of bowling.
Bowling. Lots of bowling.
Christmas Tree lighting
Christmas Tree lighting, December
Urban wildlife viewing
Urban wildlife viewing, December
Snowshoeing
Snowshoeing, December
Snuggling...lots of snuggling
Snuggling
More snuggling
More snuggling
Little bit more snuggling
Little bit more snuggling
Skiing
Skiing @ Alyeska, February
Pony riding
Pony riding, January
Pony sledding
Pony sledding, January
Aces hockey game
Aces hockey game, January
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Ice skating attempts, January
Beach Lake
Beach Lake, February
Running...but not nearly as much as I'd have liked
Running…but not nearly as much as I’d have liked
Indoor soccer...always moving too fast for a clear shot!
Indoor soccer.  Always moving too fast for a clear shot!
Outdoor carnival in February.  Only in Alaska!
Outdoor carnival in February. Only in Alaska!
Snowmachining
Snowmachining, March
Truck trouble
Truck trouble, March
Iditarod
Iditarod, March
Birthday at Bouncin' Bears.  Yes, the cake is a Storm Trooper head.
Birthday at Bouncin’ Bears. Yes, the cake is a Storm Trooper head, April

That sums up our first winter in Alaska!  We were never bored; there was always plenty to do, both inside and outside.  We made new friends, saw new places, tried new things, and still have a list of what we have yet to do for next winter.  But when spring finally shows up, there will be no tears shed here.  Winter was good, but this summer will be epic.

2014 Checklist and New Year’s Day in Photos

We may be living in the last frontier, but we are still far removed from frontier living.  In lieu of resolutions for the new year, I instead made a checklist of things I’d like to accomplish in 2014, all centered around sustainable, local living:

1. Grow a garden – Last spring, John did some strategic Craigslisting, and traded a jackhammer he no longer needed for piles of redwood 2×12’s, which we made into planter boxes.  We lined the bottoms with gopher wire, filled them with dirt, and fertilized with worm castings.  I collected packets of heirloom seeds from Baker Creek Heirloom Seeds.  Spring just finished melting off the last of winter and…we decided to move to Alaska, so we had to scrap the whole project.  I’m looking forward to sweet redemption this year.

2. Shoot something and eat it – I grew up around hunting, but still have managed to know almost nothing about it.  Tags? Licenses? Permits?  I don’t even know where to start.  I’ve fired a 9mm and a .45 in a shooting range, and an M-16 with blanks, but that was about 10 years ago.  Despite the obstacles of ignorance and inexperience, I’m sure it can be done.  I should probably start making some local friends.

Once I navigate the legalities and subtleties of the hunting part, I’ll be thrilled to get on to the eating part.  I picked up a copy of “Cooking Alaskan” at a thrift store, and have perused such timeless recipes such as “Baked Seal Hindquarter”, “Moose Tongue Stew”, and “Ptarmigan and Dumplings”.  The only question now is which magical meat will end up in my pan?

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3. Catch more fish – This at least I have a start on, having caught my first Sockeye salmon last July.  I know I’ve barely scratched the surface of Alaskan fishing with those outings, however.  There is still charter fishing, fly fishing, and ice fishing among other fishing venues that I continue to know next to nothing about.  Again, friends in the know would be quite a boon.

4. Can – This should easy if my garden is remotely successful.  Anything that can be done in the kitchen is well within my comfort zone.  I tried to make blackberry jam once, and it completely bombed, but I came up quite short of the recipe’s called for amount of blackberries.  I’ll call that one a fluke.

5. Make soap – I bought a book on soapmaking in high school, undoubtably linked to the timing of Fight Club coming out on VHS.  I’ve dragged the book with me everywhere.  It’s time to make that dream a reality.

6. Go berry picking – For this kind of expedition to be fruitful (terrible pun intended), I not only need to make friends, but make friends that really like me.  The locations of berry picking spots in Alaska aren’t something that can be Googled.  They seem to be filed less in the category of ‘public information” and more so in ‘highly classified’.

To add some check marks to my list, I’ll need to put in some concentrated effort on planning, learning, and networking. It’s a good thing I gave myself the whole year.  Meanwhile, here is a photo recap of our New Year’s Day.

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John and Silas enjoyed some more downhill action…

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while Skye and I explored 4 miles of trails.  Here is what we saw:Image

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Anchorage’s Perfect Playground

Snow, snow, everywhere and…plenty of things to do with it.  Around here, snow is in no way an excuse to stay in.  Bikes, running shoes, and hiking boots don’t get a winter break.  Playgrounds and dog parks aren’t shut down, and actually stay reasonably busy.    A sled hill in the middle of town yesterday was as packed as a summertime water park.

For our Sunday afternoon fun, we had our sights set on covering some snowy terrain right in the middle of Anchorage.  The Hilltop Ski Area and Hillside Trail System are right next to each other off Abbott Rd., which has major shopping centers and malls just a few miles down.  We weren’t interested in any of those conveniences yesterday, but the proximity to town makes the area super fast and easy to access.

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Hilltop is a tiny ski park and perfect for beginners, our 4 1/2 year old little grommet being a prime example.  Silas’s first ski season was last year at Mt. Shasta, and he really picked up a lot.  John went with him yesterday and reported that after a first warm up run, it all came back to little Si.  We are certainly pleased to be able to raise two little skiers in Alaska.  Olympics 2026?  Maybe 2030?

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While Silas and John were playing with gravity’s pull, Skye and I were literally across the street in the Hillside Trail System.  The trail system provides miles and miles of wooded dirt trails in summer and groomed and lighted nordic and multi-use trails in winter.  With Skye back in the carrier, we snowshoed for about an hour.  Times like these are some of Skye’s best naps.

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When they say Multi-Use, they really mean it.  In the short window of time we were out, I crossed paths with examples of 5 of the 6 listed users.  I saw several people hiking or walking their dogs in regular boots, one skijorer, a pair of fat-tire cyclists, multiple nordic skiers, both skate and classic, and one runner with a waist leash for his dog.  It shouldn’t have been a surprise; with temps above 20 and partly sunny skies, it was an amazing day to be out.

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Overall, as a family we found a place that meets all our needs for getting out on the weekends.  Close, cheap, beautiful, and acres and acres of snow!  I think we’ll be coming here every weekend, all winter…at least until Silas is ready for Alyeska.

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The Drive – Part 3

On Tuesday, July 9th, we rose with the mission of finding a shower and washing some clothes.  We drove for a few hours through some incredibly beautiful and scenic territory.  The highway wound back and forth between British Columbia and Yukon Territory, so we were welcomed to both provinces in a morning.

After coming around a wide, sweeping turn, one of the most picturesque and charming views of the trip opened up.  Teslin Lake below us, so long the distant shores were invisible, was crossed by a megalithic bridge that lead to Teslin Village, a sweet little town where we didn’t at all mind spending the rest of our morning and early afternoon.  We pulled in to a lodge and RV park, and had all of our needs fulfilled.  Showers, laundry, pecan sweet rolls, and a couple of souvenir mugs we’ve used every day since.

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I went in to the little laundromat hoping for the best.  Everywhere we had been so far accepted American cash, but I assumed Canadian coin-op washing machines would be less than impressed with George Washington.  Luckily, I had $8 Canadian that had been change from our camp fee at Big Creek.  I needed some coins, and was grateful someone was in the office.  I handed him my $5, and felt remarkably the same as when I was a kindergartener buying something at the store.  “Here’s all the money I have…is it enough?”

“The machines take two quarters and two loonies,” the office manager explained.

Two what?!  I poked around at the coins in my hand.  Ah-ha!  The $1 coins had loons on the back.  Feeling like I’d just succeeded in interpreting hieroglyphics, I got our laundry started.

After naps for us all, feeling freshly showered, and with stacks of clean, folded laundry, we took off from Teslin and headed for our last campsite before crossing into Alaska.  Ready to not disrupt our low mileage day with too much driving, we settled in to Wolf Creek campground in the late afternoon.  This southern end of the Yukon is still far enough north that the daylight hours stretched very late into the evening, giving us plenty of reason to set up our slackline, take a walk to the camp playground, and take our time with our steaks and corn-on-the-cob.

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Wednesday, July 10th, we knew, was our Alaska day.   There would be no stopping for the night until we were securely in the 49th state.  Our first stop of the day was in Whitehorse, Yukon, for gas.  Whitehorse is now my quintessential BFE.  It was a busy little city, with things happening and going on, and looked like a fun place to visit, but it felt like it was on Mars, completely isolated from everything and anything else in the world.

Right outside of Whitehorse, we picked up our first and only hitchhiker of the trip.  John and I had discussed other potential hitchhikers, via walkie talkie, along the way, but Lucas was the lucky one.  We continued on through Otter Falls Cutoff, where we picked up some mugs and a bumper sticker declaring our success in navigating the Alaska Hiway, to Haines Junction.  We parted ways with Lucas there, as he was going into Alaska at the panhandle, headed to Haines.  The road turned northward and followed along a stretch of mountains whose profile matched what I’ve seen in every Alaska snowboarding video.  This seemed pretty reasonable, since they’re always going to Haines to ride.

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A gas and bathroom stop in Destruction Bay marked a significant transition in the road, and made us realize that the mugs and bumper sticker were purchased prematurely.  Imagine the worst road you’ve ever driven on, blow it up with dynamite, drive on what’s left, and you have an idea.  My understanding is that the expansion and contraction of the permafrost over the seasons makes the road impossible to keep smooth.  We were so rattled, shaken, and generally agitated, that we crossed the border back onto American soil and into Alaska completely unceremoniously, without even pausing for the photo-op at the Welcome to Alaska monument.

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Going through the border check here was quite a different experience than crossing into Canada had been.  After handing over our passport cards, the following inquisition ensued:

“Buy anything other than food and gas in Canada?”

“A few mugs.”

“Have a nice day!”

Nothing has ever made me feel more patriotic.  There’s something very comforting about returning “home”, being treated like an insider, even in a place I’ve never been.  The speed limits were posted in mph again; even though I had no problem with kph (as a trail runner, I’m acutely aware of just what 50k means, having done it on foot), I was more than happy to return to my default setting.

The next landmark was the city of Tok, but since it was getting late in the day and we were the most tired from driving as we had been any day, we turned left for Anchorage and our last campground of the trip.  The Porcupine Creek campground was barely our host; we stayed only long enough to sleep.

Thursday, July 11th was our final day, and we didn’t want to waste any time.  After breakfast in Glenallen, we made our final push down the Glenn Highway, and through the most spectacular views of the entire drive.  The highway followed along the northern border of the Wrangell-St. Elias National Park, and we were treated with the sight of mountain peaks and glaciers the entire way.  At one point I was impressed with a range of tall, snowy mountains, cloaked in clouds, until I realized the clouds were actually a range of taller, snowier mountains.  We hadn’t made much of a habit out of pulling over to take pictures during the trip, but we made up for it along this stretch.  Every time we thought we’d seen the most breathtaking sight, the next bend would produce a greater one.  One summit that was in the backdrop for a great portion of the day, Mt. Sanford, which loomed at an impressive 16,237 ft, was quite possibly the tallest mountain I’ve ever seen in person, and I’d never even heard of it.

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We made it into Anchorage by mid-afternoon.  The city felt like any other: traffic, Targets, and stoplights, with the exception of the ragged Chugach Mountains dominating the skyline instead of buildings.  The contrast neatly sums up our vision, our goals, and our purpose for the whole trip: the sacrifice of urban living to support and allow for our dream life in the mountains.

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