I am here. Week 26/26. This is the week before I run a full marathon. I've trained for 25 weeks. 25! Looking back at my summer, every weekend involved finding a way to work in a long run - wherever I was - Montana, Phillips, Oshkosh... it didn't matter, but I had my running shoes and I ran. This is the hardest things I have trained for. Running is hard for me, and the training really took a lot of time. But I knew that going in, and was determined to make it happen. Once I cross that finish line on Saturday, I'll be able to cross it off my list.
Surviving Aplastic Anemia catapulted me into a life of constantly striving for adventure. After being told I was in remission, I started off with a big one -- hiking across the country with my mom in 2006. That epic journey took us nine months to complete and was titled, "Our Hike" for Bone Marrow Disease. This blog is record of those adventures that shaped my life... and beyond.
Tuesday, October 5, 2010
Marathon Prep
I am here. Week 26/26. This is the week before I run a full marathon. I've trained for 25 weeks. 25! Looking back at my summer, every weekend involved finding a way to work in a long run - wherever I was - Montana, Phillips, Oshkosh... it didn't matter, but I had my running shoes and I ran. This is the hardest things I have trained for. Running is hard for me, and the training really took a lot of time. But I knew that going in, and was determined to make it happen. Once I cross that finish line on Saturday, I'll be able to cross it off my list.
Friday, September 24, 2010
"Our Hike" for Bone Marrow Disease 2010
Another fundraiser has come and gone, and once again, we'd like to thank everyone involved in making it a great success. However you were involved... by making a donation online, hiking with us, donating raffle items, spreading the word and awareness or even just wishing us well - we thank you! We couldn't do it without our supporters, friends and family.
The event was held on Sept. 11, 2010 this year, and we raised over $1,600 to be sent to the Aplastic Anemia & MDS International Foundation! To date we have raised nearly $130,000 to raise awareness and to find a cure for these deadly bone marrow failure diseases. This is why we continue to hike every year. Every little bit adds up to a bigger amount - and in the end we can all feel like we've worked together to make an impact. We just hope to help save lives. We need more awareness so the correct diagnosis can be made. We need constant patient education materials so patients and their caregivers can get the support they need. Research dollars are also so very important for Bone Marrow disease... these diseases are too often mistaken for cancer... but they aren't! There are no cancer cells involved, which would be a good thing to hear from your doctor... but in the case of bone marrow diseases like Aplastic Anemia, that doesn't mean you're out of the woods by any means. It's not as well known as cancer -- so there aren't as many huge studies done, and there aren't as many widespread support groups out there.
I have a little side-story here about my diagnosis, and I've heard similar stories from other patients, as well. When my mom, dad and I were at the clinic with our hematologist and they told us that it wasn't cancer, or leukemia... there was a sigh of relief. Why wouldn't there be, right? Well, when the doctor then explained that the disease I had was more rare, and that he's only seen one other patient with Aplastic Anemia, we started to feel scared and confused again. Now what, right? Well, my hopes are that upon diagnosis, more patients will be able to say, "Oh, I've heard of that..." and even better yet, "I know someone that's survived that!" What a positive outlook that would start a newly diagnosed patient with!
So we just keep on plugging away. We hope that everyone that joined us this year will be back next year, and we hope if you weren't able to make it out that you can next year. In the big picture we might be a small group, but we sure are a tough one as we continue to hike each year!
As of right now, we plan on having the next event on September 10, 2011, but we might try to move the hike out a couple of weeks so that it's closer to peak fall color season. We will be sure to let everyone know if that time does change, but go ahead and mark your calendars for 9-10-11 for now. :)
We started out with registration at the Corner Connection where we gathered to start the hike. We raffled off two Gregory Daypacks this year for registered hikers - one ladies' and one men's. Ken one the men's and Brenda won the ladies' (Brenda is from Blue Door Consulting in Oshkosh and was a HUGE help with media when my mom and I hiked the ADT in 2006 - she was also someone I'd call if I needed cheering up - she's so bubbly and always picked me up when I was feeling down. She surprised us by showing up with her husband, Alex, to hike with us!)
We hit the road, going in the opposite direction as we have in past years. We started walking on Hwy. W for a short jaunt, then turned onto Skinner Creek Rd., which is a gravel country road lined with trees. It drizzled on us a little bit, and it was a enough for me to throw on a poncho, but it didn't last too long. It was just enough rain to give the woods some super-vibrant color.
Then we took a slight left onto White Birch Lane - still a gravel country road - then onto the Georgetown ATV trail. The trail narrows and gets prettier as you go. We all enjoyed the woods, and there was even a spatter of fall colors in the trees here and there.
When we finished the hike back at Corner Connection, they graciously held a meat raffle for us! So paddles went around, we drew tickets for some door prizes, and pigged out on a lunch special of pulled pork, chips and a bunch of goodies that family and friends made to share with the hikers (THANK YOU to those who made treats, too!!!).
I think several of us took a little nap before heading to Club 13 in Phillips for dinner, raffles and music. We started out with a yummy spaghetti dinner, then the DJ set up and played some music, and we started up some paddle raffles in between songs. We had a lot of baskets this year (THANK YOU to everyone who helped with baskets by donating items and helping put them together!).
After the music and raffles were done, some of us were headed out to the Phillips Fairgrounds where we had a group camp set up. Mike and Joan, the owners of Club 13, arranged a limo ride for those of us staying out there! That was an awesomely fun perk to camping! I can honestly say I've never had a limo ride to my tent before this!
Our night ended at camp with a nice campfire, a midnight snack of sweet corn on the fire, a ringing bell and some great conversation. Thanks to everyone for such a fun time. I already can't wait until next year. Again, we hope to make it bigger and better next year!
We'd like to send out a special thanks to The Corner Connection, Club 13, Mimi Seamens and the Sassy Quilter's, and Kens Carpets.
Thursday, September 23, 2010
Highlights from Summer 2010
Tuesday, May 25, 2010
Spring 2010
Adam with Dr. Reynolds after the graduation ceremonyAdam graduated from ITT Tech on March 26 with his Associates degree in Software Programming. It was a nice ceremony at the Tundra Lodge in Green Bay. We had a party planned back in Oshkosh after the ceremony was done, and since there was a group of friends waiting for us there, and karaoke booked and ready to play, Adam was in a hurry to jet out of there as soon as he had that diploma in his hand! It was funny. But it really was a nice ceremony... Adam graduated with a 4.0 GPA and Dr. Reynolds even told me that Adam was one of his best students... and that "he was so serious." Haha! That didn't surprise me! When he puts his mind to something, he totally takes it serious and does a great job. I'm so proud of him. ITT is already asking him to come back for his Bachelor's degree, but he needs some time off for a little bit. And ITT is quite expensive, too! So we're going to just ride the wave for a while and see where life takes us.
Adam's graduation party invitation pictureAs of now, in May, we're just getting ourselves back into a routine. I just finished up a semester of taking a couple of classes at our local tech. It was a busy semester for me with a lot of reading. I was really feeling burned out, so I'm really happy that classes are done for a while. Adam's been working a lot for Ryder, and pretty soon he'll start looking for something a little more "regular." That job works him some super-long hours -- and he's only a "casual, part-time driver." Some weeks he works 50 hours, so I don't know that I would consider that "part-time" or "casual," but it's a job. I just have this dream for him to be in a position where he can work somewhat "normal" hours and maybe have some vacation time to play around with. I pray that an opportunity that's a good fit pops up for us. But we've got vacation planned here soon, so we've been focusing on that for now. We'll worry about those bigger life responsibilities a little bit later on. :)
Adam's graduation was the highlight of our spring. That was a lot of fun and a long time coming. It was great to see him so proud of something that he worked so hard for!
In April we had a busy Easter with church. It went quick, but it was fun. April was also memorable for me because I had two outdoor trips that month. The first one was at a cabin near Escanaba, Michigan that Randall (from our backpacking meetup group) set up. It was this amazing little cabin up north. We basically had this entire small lake to ourselves. There was still a little snow on the ground, but that didn't matter one bit to us. We went for a dayhike on Saturday, ate some food, had some drinks, made some cake on the campfire from hollowed-out oranges, and grilled a bunch of meat... it was a great weekend.
Chocolate cake baked inside oranges over the campfire Two weekends after that one I head down to the Northern Unit of Kettle Moraine for another backpacking weekend that Randall set up. It was a rainy one, but still a good trip. I took lots of pictures with my new Olympus Tough camera - it's waterproof! It was fun to take it out for pictures without worrying about getting it wet. It worked great!
Rainy Kettle Moraine!It was close to Randall's birthday, so we bought him a cake and decorated it on the way down, and Rachel and Graham bought him a chef's hat and some awesomely bedazzled giant sunglasses. It was a fun surprise.
Randall sportin' the bedazzled sunglasses, chef hat and birthday cake.In May I was stressing out about finishing up my semester at FVTC. I had a busy schedule, my calendar got full until October and I was really having a hard time dealing with it all. I'm kind of torn because I have such a full calendar, but it's mostly all fun stuff that's going on. So I can't complain about it, really... I'm just kind of upset with myself for piling so much on. It's makes it difficult to be spontaneous. But... as I said, it's fun stuff, so I'm just gonna roll with it! Wait until my next entry when I write about June. Adam and I are vacationing, so we're really pumped about that!! And it's coming up FAST! Yippee!!
I just got back from our annual canoe trip in Phillips. It was less crazy this year, but sure relaxing. I got up there Friday night, set up and hung out by the fire. On Saturday we got up and paddled for about 5 hours, slowly down the South Fork of the Flambeau. We ate a lot and had a nice time Saturday night, then Sunday woke up with intentions of going out and playing in the water... but never made it out. We just sat around the fire for a few hours and relaxed. It was actually kind of nice to not HAVE to be anywhere. Then I stuck around Sunday night and my dad made some awesome steaks, Justin made some great garlic-mashed potatoes, and my mom had some garden salad she made up and grilled asparagus. Yummy!! Then I head back to Oshkosh late and slept in on Monday morning... rolled into work at about noon. It was the relaxed weekend I think I needed.
Now I'm ready for Memorial Day weekend - Adam and I are just using this 3 days to prepare for our 2 weeks driving out west. We are both just going through the daily motions until it comes time for us to just... run away for a little while!
GUS!! Here we come!!
Monday, May 17, 2010
"Empty my hands, fill up my heart"
"My hands like locks on cages of these dreams I can’t set free
But if I let these dreams die
If I lay down all my wounded pride
If I let these dreams die
Will I find, that letting go lets me come alive"
I think it just reminds me to stop worrying so much about not being able to live out every one of my dreams and remember that there's always that "one thing" that's so much better than anything I can even imagine. There's something so much bigger, so much better, and all these things I worry about are so little. Dreams really are something to bide our time here on earth. It keeps us busy and working towards something -- gives us something to do. But it's really okay if we don't check them all off of our list, because in the end, we'll be in the best place ever... sitting next to God in heaven.
It reminds me that life is good, but heaven is better. It makes me so happy, relaxed and just at ease to think about it. What a relieving feeling. I love my life, and there's so much more to look forward to!
The full lyrics to "Empty My Hands" by Tenth Avenue North
I’ve got voices in my head
And they are so strong
And I’m getting sick of this
Oh Lord, how long will I be haunted by the fear that I believe?
My hands like locks on cages of these dreams I can’t set free
But if I let these dreams die
If I lay down all my wounded pride
If I let these dreams die
Will I find, that letting go lets me come alive?
So empty my hands
Fill up my heart
Capture my mind with You
Oh, empty my hands
Fill up my heart
Capture my mind with You
With You
With You, Lord
‘Cause these voices speak instead
What’s right is wrong
And I’m giving into them
Oh please Lord, how long will I be held captive by the lies that I believe?
My heart’s in constant chaos
And it keeps me so deceived
But if I let these dreams die
If I could lay down my dark desire
‘Cause if I let these dreams die
Will I find, You brought me back to life?
So empty my hands
Fill up my heart
Capture my mind with You
Oh Lord, empty my hands
Fill up my heart
Capture my mind with You
With You
‘Cause my mind is like a building burning down
I need Your grace to keep me
Well keep me from the ground
My heart is just a prisoner of war
A slave to what it wants and to what I’m fighting for
So won’t You…
So empty my hands
Fill up my heart
Capture my mind with You
Oh, empty my hands
Fill up my heart
Capture my mind with You
With You
With You
I need You now
I need You now Lord
With You
With You
I need You now Lord
Tuesday, April 27, 2010
Catch-up entry! First few months of 2010.
My first few months of 2010 have been pretty amazing. I’m feeling really fortunate and blessed to have so many special people in my life and the opportunities to do some fun stuff. I’ve had quite a few outdoor weekends, some at home, and I’ve spent a lot of time with a lot of really great friends… and one amazing husband! It’s just been a really good year so far. I am one happy girl!!
My first camping weekend was the very last weekend in January in the Northern Unit of Kettle Moraine as part of a backpacking meetup that Randall put together. I don’t have any pictures from this trip because my camera took a poo on me, but we had a new hiker with us this weekend that took some video – Graham was new to our group, and for his first trip, he did amazingly well! Especially for being kind of a chilly, wintery weekend, he seemed very well prepared! After the hike he put together a really nice video, which I’ll post below.
I got there Friday in the early afternoon and parked at the Mauthe Lake Campground and hiked about 6 miles to meet the rest of the group at the shelter. It felt good to be out, but I did realize that my toes and knees weren’t completely healed from the Frozen Otter yet. But it wasn’t anything I couldn’t handle. When I got to the shelter there was a nice warm fire started already, and we made some food and had some drinks. The next day we hiked back towards Mauthe Lake campground and a little beyond to the next shelter. The trails were really solid with packed-down icy snow. It wasn’t necessarily slippery, just really hard. I brought my saucer sled, so I took that down a trail, and MAN! You really flew on that thing! Because the trails were so hard-packed down, there was almost no friction – it was scary-fun!! I almost hit a tree every time I went down – it was a rush!
Saturday night we had mexican and I made some tiramisu to pass around (which is messy and hard to make in the cold... and I know doesn't fit the mexican theme, but it just tastes good. :) I was sad to go, but I couldn’t stay overnight Saturday night because I wanted to be back in time for church the next morning. So I hung out around the fire until everyone was pretty much ready for bed, then I hit the trail back to my car. It was a good first trip of the year!
Thanks to Graham for putting together an awesome video!
February began a busy Lent season with church. We had Lent services on Wednesday nights, and we’d practice for choir after that. We were also at church on Sundays, and sometimes for both services because Adam leads the congregation during our later praise service, and he’s also part of the praise band. So he was always really busy working on all that and keeping the church's sound system in constant check! I did get a few chances to get together with our Pastor’s wife, Laurie, to do some flute duets. It was really fun to play with someone during the services. I also played my flute with a song our choir did on Easter Sunday, and it went really well. I really love all the people at church, and it really just makes me feel happy when I go. So Lent and Easter was busy, but left me feeling full for sure!
I also went on a girl’s weekend in Wisconsin Dells. It was a bit of a low-key weekend compared to last year’s trip, but it was really nice to get together with all the girls and just hang out and relax. We rented a condo as a group and drove down there on a Friday. We went out to dinner at a restaurant in the busy area we were staying in. It was one of those water park hotels, so there were kids running around everywhere! It was crazy! After dinner we went out on the town and didn’t get home until really late… and maybe had a few too many bevvies… but we sure had a blast! On Saturday morning we all woke up slowly and ended up sitting around the condo most of the day eating and watching TV movies -- with commercials. I don’t think I’ll ever like the movie “Notting Hill” after that weekend! I swear it was on for 5 hours! Sunday we woke up, packed up and head home. Oh, and Sarah and Heidi surprised us all with “Box Tour” t-shirts! That was really cool… and a really nice surprise! It was really fun having us all wear them when we went out. It was even more fun seeing people’s reaction to them… they would look at us like, “Does that say what I think it says?” :)
Here’s a photo that was taken of us girls at work for a staff favorite photo!
In the middle of March we had a meetup in Upper Michigan at a rustic cabin in the Porcupine Mountains wilderness area. We stayed at the Gitche Gummee cabin – it has no electricity and no running water, but it did have a stove inside that we could cook on and a pit toilet… (LOL -- after reading through this, I realized I made it sound like the pit toilet is on the stove or something... but since it made me actually laugh out loud, I had to leave it in! So, actually the pit toilet was a separate little thing outside! :) Our group normally goes backpacking, so this was living easy!! We had a lot of fun on this trip… our cabin was literally right across the road from Lake Superior, so we were able to walk out there at any time and enjoy the beach.

Lake Superior shoreline
I know that I had a severe case of cabin fever – what an ironic term since I cured it by having a cabin weekend – but I think everyone else was feeling kind of the same thing… we got up there Friday night and just kind of let loose. We ate, drank, laughed, hung out by the fire… I wore my new ginormous shades the whole weekend… it was a lot of fun. During the night Friday night I woke up (with my sunglasses still on) and realized my sleeping bag had fallen to the floor (I was on a top bunk). That wasn’t a big deal because I was sweating my BUTT off! It had to be over 100 degrees in that cabin – and I’m not even kidding!! I tried to get the window open that was by my head, but I couldn’t figure it out in the dark, and I was trying not to wake anyone. So I snuck down off of my bunk and head outside to the pit toilet. It felt amazing – was probably 32 degrees, but I didn’t care. When I walked back into the cabin I just started to laugh! It was so freakin’ hot in there you could hardly breathe! Then I realized that half of the other people in there were also awake from the heat – but everyone was trying to stay quiet hoping to not wake anyone up!! I walked around the cabin at that point and opened all the windows… then we were finally able to get a few zzz’s before the night was over.
Around the campfire Saturday nightSaturday morning we all woke up slowly and made some breakfast, then gathered our gear and went for a dayhike towards Lake of the Clouds. It ended up being about a 9-mile hike, and was just what we needed after a late night around the campfire. It was beautiful to see Lake of the Clouds off in the distance all covered in white ice and snow, still. The sun was shining and the sky was blue – it almost felt like spring, except that the wind still had that crisp wintery bite to it yet. But we were all just happy to be in the woods with each other! On Saturday afternoon, after our hike, we all head down to the beach to watch the sunset. We played some lawn darts and took some pictures, then head back across the road to the cabin where we ate some more and had another campfire. Sunday we just packed up, cleaned up, and head out. We all stopped at a brewpub in Minocqua for a hearty meal together before we all split ways.
Thanks to Graham again for another fun video! What a way to remember fun weekends!
I’ll do another couple of entries in a bit so I can do a little recap of April and to catch up on the highlight of March – Adam graduating from ITT Tech!
Thursday, April 22, 2010
Catch-up entry! Frozen Otter aftermath
Well, if you’ve visited my blog in the past, you know the last thing I wrote about was the Frozen Otter. That was a great experience, and today I am still seeing some of the aftermath from that. 64 miles is a long ways to go, and doing it in 22 hours really pushed my body passed its comfort zone – which is one of the reasons why I do it. After the race I got some nasty blistering underneath my toenails. They got really swollen and were very painful so I went to the clinic and had them drained (I know, yuk, right!?). I kept draining them for a few days and finally let them dry out on their own. After another week or so of babying them and applying a lot of triple antibiotic ointment to them on a daily basis, they hardened back up good as new – and they turned a pretty tie-dyed color! It looked like I was wearing some super-funky nail polish! I questioned each day whether or not they might fall off. Well, believe this – only ONE WEEK AGO I lost my first toenail from the Frozen Otter!! 3 months after the fact! It didn’t hurt either, so queezy tummies can subside. I know it’s hard to understand the thought of losing a toenail not being painful – this is the first one I’ve lost, so I know! Before this, whenever anyone mentioned it to me, I would cringe too. But seriously – an ingrown nail is waaay more painful than this was. I taped it up during my Wednesday treadmill run last week, and afterward I just very gently pulled the tape off – with no pain – then gently pulled the toenail off – with no pain. It was crazy-weird! My toe looks SO naked now… I was really getting used to the purple tie-dye look. But my left big toe is still that weird purple color, and so are a couple of my little toenails. I imagine those will fall off in time too, but I’m in no hurry. :)
In addition to the toenail thing, I’ve been dealing with another “Frozen Otter aftermath” experience in the past couple of months. About a week after the race my right knee was a little swollen – I mostly noticed it when I bent it sharply. A bulge would stick out on outside of my knee and it looked sort of deformed – and that was the only time I really felt any sort of pain. I applied some RICE therapy – Rest, Ice, Compression and Elevation (well, I didn’t do the compression part – so I did RIE instead). It didn’t seem to help. I took ibuprofin and that didn’t help, either. It wasn’t bothering me during my workouts too much. It really only bothered me during specific movements involving landing on a straight leg (like jumping jacks) in aerobic classes. I finally decided I better have it checked out. My doc took an x-ray and told me there was edema (swelling) in my knee. Well, I knew that! So she had an MRI scheduled. I had an appointment with an orthopedic doctor and told me the MRI results. I had a baker’s cyst on the back of me knee (this is why me knee looked all wacky when I bent it sharply). The baker’s cyst is pretty common – people can have them their whole lives and not even know it. It’s just a fluid-filled sack in the back of your knee. But my MRI showed the reason for the extra fluid was due to some cartilage wear on the inside of my kneecap. Doc said there’s like a little flap of cartiliage that’s being irritated and causing the extra fluid. The only way to cure that is to smooth it out with orthoscopic surgery, but I opted to try a cortizone shot first. I didn’t notice any effect from the shot until about a week later, and I’m happy to say right now that my knee feels almost back to 100%. I’ve decided I’m not going to even think about surgery until there’s a point when pain gets in the way of doing the things I love to do. I don’t want to start digging around in there until I have to.
So that’s that. The aftermath from the Frozen Otter. I’ll take it with a smile, too. I’m really proud of myself for finishing that sucker, it was an awesome experience, and I wouldn’t take it away to have perfect knees and fresh toenails. I know the consequences of my crazy-crazy… and I’m okay with it.
Well, I suppose that’s good for now. I’ll add a few more entries in a bit. I’ve got a couple of weekend camping/outdoorsy things to tell about – with some pictures! Adam graduated, and that’s super-awesome, I had a girl’s weekend getaway, a very busy Lent and Easter, and I’m getting very excited about a vacation that Adam and I are planning! So I’ll have a couple more updates coming.
Oh, and Happy Earth Day!













