First Descents – JacksonHole, Wyoming 2015

It has been a real long time since I have written anything here, but this past week I’ve had one of the best times of my life!

I was able to go on a trip with the First Descents, which is an amazing organization that gives young adult cancer fighters/survivors/thrivers a chance to spend a week learning a new sport and having an adventure. The different options for the trips are kayaking, surfing, and rock climbing. Since I’ve canoed so much in my life, I figured kayaking wouldn’t be too much of a difference (I was WAY wrong).

I left early morning on Thursday and after a couple of plane rides, arrived at the Jackson Hole airport. Literally landing right next to the mountains, is absolutely beautiful. We were instructed to just find the others in the program at the airport and then we’d be picked up. We were able to meet up fairly easily, and then not too long after, our ride was there! We got picked up by one of our camp mom volunteers and one of the program directors. We were informed right away that we would all be receiving nicknames that we would be called by all week, and we needed to start to get to know each other so we could name everyone. We hopped in the van with the camp mom volunteer, and headed into downtown Jackson. We all grabbed lunch and got to know each other. We also got the opportunity to walk around the down town a bit. After that, we headed to the ranch and got a tour of the whole place. It was great! Definitely brought be back to church camp back in the day. We spent the afternoon hanging out and getting to know each other. We had a delicious dinner and our first campfire talk to end the first night.

On the second day, we headed out to Rendezvous water sports store to get all of our gear. We were all sized up for a wetsuit, kayak skirt, booties, splash jacket, helmet, and life jacket. After we got all of our gear, we headed out to a remote lake where we did a lot of skill building lessons. We were thrown into being turned upside down under the water, contained in the kayak with the skirt. So for someone with some mild claustrophobia, it was a little terrifying. The guides were right next to us the whole time and would flip us back over right away, but they wanted us to be comfortable with the feeling. Then we learned how to “wet exit” where we pulled the strap on the skirts to get out of the kayak… upside down in the water! It was terrifying the first few times, but they wanted us to do a few to make sure we were comfortable. After lunch, we went out on the lake and they taught us all the different strokes and how to move with your kayak – tilting with the way your boat was turning, staying loose in the hips, and all the other good stuff. After learning all that stuff, we headed back to the ranch where we had time to hang out before another delicious dinner. Followed again with a campfire talk, where we were all asked the same question and answered if we wanted to. They also gave out awards that were re-gifted each day. The first award was the “On the Water” Award, given to the person who totally rocked it on the water. The next award was the “Off the Water” Award, given to someone who was amazing off the water, typically being a helpful hand to everyone. The last award was the “Sunshine” Award given to someone who was a bright light of sunshine the whole day. After campfire, we all headed to bed, after a long day on the water.

The third day was our first day going down the Snake River. This was totally nerve wracking for me. I seemed to just get progressively nervous the whole week because I knew how much more difficult it was going to be. During this day, we spent a lot of time on pretty calm water. We learned to get in and out of eddies, which are these calm areas of the river, after a block in the water. The hard part about them, is the water trying to get in. It’s super swirly and you can dump over in it pretty easily if you don’t tilt into the turn. It’s crazy! It’s the same type of difficulty to get out of the eddies as well. There’s a lot of technique to it. We went through some small rapids that seemed really crazy at the time, but really weren’t. We learned how to find the “v” in the water line and go “Hey diddle diddle, right down the middle” as they would say. It’s was a long day on the water, but it was awesome. Once again we came back to the ranch and had some free time before dinner and campfire.

Day four was supposedly our day off, but we actually did a lot! We went to The Grand Teton Mountains and Jenny Lake. We took a boat across the lake and hiked up to a waterfall. The whole thing was beautiful. We had lunch at the waterfall before walking back down to the lake. While waiting for the boat back, we saw 2 moose in the wild! It was awesome!! After we got back across the lake, we headed to downtown Jackson and got to spend some time around there. We didn’t take too much time there because there was a small group of us that wanted to head to a hot springs. It was amazing! So beautiful! After the hot spring we went back to the ranch for another great dinner and campfire.

Day five was back on the water. We rode down the Hoback River, down to where it meets up with the Snake we rode on day 3. The Hoback River was way lower and had a lot of rocks, which made it a more technical ride. We had a lot of moving back and forth across the river, trying to dodge things. Once we met up with the Snake River, we went through some of the same Rapids from the day before and they seems so much less intimidating. It’s amazing how much things can change in a day or two. After the end of this day, we again went back to hang out at the ranch. During this hangout, we hung out around the pool, watching some of our guides do kayak tricks in the pool at the ranch. It was so much fun watching that! They’re super talented! We again had an amazing dinner and campfire. This day I was awarded the “On the Water” award. Everyone had been calling me the dark horse because I was usually quiet but supposedly killing it in the kayak. I definitely didn’t believe that, because I was absolutely terrified the entire time, but I was happy to accept it!

Day six was our last day on the water. We rode down the Snake River again but this part was called The Grand Canyon of the Snake, which basically interrupts to being huge rapid to go through. I was completely terrified in the morning and talked to the staff about just riding in the great big raft. They were very encouraging and said they believed I could make it through the day in my kayak with always having the option to switch sometime throughout the day, if I needed. I did pretty good through the whole day, until right before lunch. I went through these huge waves and then flipped under water right afterwards in the swirly part at the bottom. I was totally freaked out after that. I almost rammed into a rock at the end but one of the guides was able to save before I did! I definitely debated changing boats after that, but ended up staying in my kayak. But luckily one of the guides offered to stay right by my side the whole time which was great. During the rest of the big rapids, he was right by my side, even hanging on to me at some parts. Which was a great help. I was absolutely exhausted by the end so I definitely appreciated it. We did a couple of cool things this day. One was our “Graduation Rapid Ride” where we went down the rapid all by ourself and didn’t have any guides by us to guide us. It was such a great feeling to go through the whole thing safely and on your own. It was amazing. We also all grabbed onto each other rafts to form a flower shape. In that shape we went down a rapid together. It was so cool. Then we were all done with our trips down the river! Then again, went back to the ranch to hang out, have an amazing dinner, have our campfire time, and watch a slideshow of our whole week taken my our photographer. It was the perfect way to end the week.

Then this morning we all just hung around for awhile before heading downtown to shop for a bit. Then we all headed to the airport to leave each other. It was such an amazing experience. First Descents has created different ceremonies we did throughout the week which were amazing as well. Everyone came together so fast and by the end of the week everyone felt like family!

We did have some scary experiences during the trip. One of our participants had to leave as she had severe pain from another brain tumor. It was such a scary experience which really shook us all up, but in a way brought us all together faster, I think. We all are just hoping for the best for her and were thinking of her all week.

All in all, this week was amazing (if you couldn’t tell already). I had strong thoughts of leaving after all the scariness happened. I figured I had already spent two days doing the activity and got want I needed out of the experience. But I am SO glad that I stayed. I would have been so disappointed with myself if I had left. It was just wonderful and I am so thankful for the opportunity.

Just for fun, here are the nicknames of everyone on the trip:

Program directors:
Patch
Coach
Huckleberry

Chefs:
Antelope
Chamomile

Photographer:
Token

Camp Moms:
Pickles
Jams
Moose
Cheese
Jump

River Guides:
Speed Monkey
Wild Thing
Call Me
Brown Claw
Doobie

Participants:
Rummi
Lotus
Boat Drinks
Cobalt
Tie Dye
Shotgun
Hungry
Smooth Moves “Smoves”
Bandit
Eye Candy
Doc
Chemo Sabi

Getting along with the rest of my life

Today I had an appointment with my home oncologist. I got to see almost all the ladies that helped me along the way 🙂

The only things I have coming after this appointment is another meeting with him after I have my scan at Mayo on June 5th. I also have to have a pulmonary function test and an echocardiogram so they can see how my heart and lungs are doing after the chemo.

At the end of my appointment, my doctor asked what my plan was now, and I said I didn’t really have one. He asked, “Getting along with the rest of your life?” I replied, “Exactly”

It’s been awhile!

Since I’ve last updated, I’ve had my 6 and 9 month check ups and BOTH WERE CLEAR!

Over the summer I went to a couple weddings, traveled to the south twice, and to chicago a few times. My brother got married and with that I got a new brother and a new niece and 2 new nephews! Also a few weeks ago, my sister in law had a little girl! So over the summer I went from one niece to 3 nieces and 2 nephews!

Now I’m starting to look for jobs and get back into that. All in all, everything is wonderful!

Here’s how my radiation has been going

So I’ve been here in Rochester since March 17th. I’ve been going to my radiation appointments daily, and they’re not going too bad! My first day here they explained to me that I will only be doing two weeks of radiation because the difference between doing more damage than good could have been high. Since I’d be getting radiation on my chest and neck area, it could cause damage later in life my heart, lungs, and possibly cause breast cancer later in life. So they decided to do only two weeks instead of three.

I had my first appointment Monday and that one took a little bit longer than usual. For every appointment I have to get two x-rays taken and a CT scan done before they can even start doing the radiation. Those are to ensure that I am in the same exact position every time I get treatment. That usually takes about 15 or 20 minutes and then the actual treatment takes about 20 minutes as well. The radiation machine has to go past me four times and I have to hold my breath every time it shoots the radiation at me. It takes about three breath holds every time it goes past me so I have to hold my breath about 12 times for each treatment, not including the x-ray and CT scan. It isn’t too bad but you do have to stay very very still during the whole time which can be tiring. Most days my appointments have been about 45 minutes long.

Every week I’ve met with the doctor and the nurse to just talk about my current symptoms and if I’m having any troubles with the treatments. Possible side effects have been sore throat, reddening of skin, or tiredness. I’ve only really had a sore throat the past couple days and have kind of felt tired but nothing terrible.

While I’ve been here I’ve also been meeting with the breast center to talk about my future with that. Starting when I’m 32 or 34 I’ll have to start getting yearly mammograms which is about 10 years earlier then a normal person. I’ll also have to get an MRI done every year as well so, every six months I’ll be getting sort some sort of scan done.

While I’ve been here, my friends Nicole came to visit and also my grandparents Virgil and Phyllis came to visit. It was great to have them all here and help make the time go fast. I also went home on the weekend which helped a lot.

Tomorrow is my last radiation treatment and I’ll be going home on Saturday morning. One neat thing that you get to do at your last treatment is ring a bell in the waiting room and everyone applauds for you. Once I’m done with the things tomorrow, I will be done with everything until I have my three month appointment which will probably be in June. It seems so surreal to be almost done with this!

Day 45 check

So my doctor had wanted to see me around 45 days after my transplant. She was out of the office that week, so it was about 60 days after treatment when I met with them. We left at 6AM Wednesday morning. I wasn’t allowed to eat or drink before getting my blood drawn so I wanted to get there early so I could eat. Then I couldn’t eat 4 hours before my PET scan, so we had a 1.5 hour time where I could actually eat some food. So my first day there I got my blood drawn, a chest x-ray, and a PET scan. 

Then Thursday I had an appointment in the morning with my transplant doctor. She came in and right away told us that my scan was NEGATIVE for cancer! So that is great! She checked me out all over and we talked about a bunch of things. We started to talk about radiation but I had an appointment with the Radiation Oncologist, so we didn’t know much with her. 

At 12:45 we met with the radiation oncologist. It took quite a while for him to come in, but he was looking through all my scans. He explained everything and we decided that I will be doing my radiation at Mayo. It will be 3 weeks long, so it’s not that bad. 

With the radiation, they have to do a simulation and CT Scan 3-4 days before starting the treatment, so they have enough time to create your radiation plan. So since they knew we were going home yesterday, so they tried to get me in yesterday to do all of that. And they were able to! 

So right after that appointment I had to go get an IV placed, then I came back to the radiation offices. Then I spent about an hour laying while they created my pillow for every time, practiced breathing, did three different CT scans. I got three little dot tattoos, and have marks on my stomach where they will put a box that help them watch my breathing. But now I am all set up for radiation and I will be able to start on March 17th! It will be for three consecutive weeks, going everyday Monday-Friday. Only 15 times, no big deal! 

Here’s pictures of my tattoo (little black dot in the middle) and marks on my tummy!

I’m home!!

I’m home, just in time for a blizzard! But it is awfully nice to be home and know I don’t have to go out to do anything! I’m also fully engrafted and I don’t have to go back to anything at Mayo until March 5th. Until then I’m going to see my oncologist and primary care doctor here so that they can see where I’m at and talk with them, just in case I have any issues. Other than that I will just be resting!