Livestrong Program at the YMCA

Today was a graduation day for me. I graduated from the LiveSTRONG program at the YMCA!

This free program is for cancer survivors. The whole family is able to enjoy the Y's amenities for those 3 months for free. Since it is a free program, the YMCA has annual fundraisers to help keep this program free. The Greater Louisville YMCA has several branches to choose from for the program. Fortunately, the Y closest to me had times that fit in with my schedule: every Tuesday/Thursday for 90 min in the morning.

The program is 12 weeks and focuses on cardio, strength, and flexibility. It starts where you are fitnesswise and works towards your goals.  Every cancer patient has their own unique journey and recovery story. This program helps address the weaker areas to "Recover Strong" as they have as the slogan on the back of the shirts. I was fortunate enough to be able to start the program a month after my surgery. Having only surgery and already a runner, I knew I was ok in the cardio area, but needed help in strength and in the flexibility - especially my neck area.

The first two times you meet with the Livestrong coordinator are pretty casual. You get to know one another, share your story, and  might be able to meet a few of the other participants. You also have pre-assessements that measure your resting HR, cardio during a 6 min walk with post HR check, balance test, some flexibility testing, and percent body fat.

Our typical meetups including waiting for everyone to arrive and then start some cardio. We all did 30 minutes, but this could be less if needed. We had treadmill, elliptical, cycling, and rowing to choose from each time. Once the cardio was over, we headed to the strength component. This was individually based. We all started with the machines that our coordinator help set up the right starting weights and correct positioning for the machine. As we moved along in the program, Kate, our coordinator, offered up some additional strength training exercises that would help meet our goal. I was interested in the free weights and TRX, so I was able to get some instructions and tips on that area to continue building my strength after the program. Once we finished strength training, we stretched. This is really where I made some great headway with the flexibility in my neck.

Kate was there to help, but it was really us that had to put in the effort and dedication to reach our goals. My goals were to be able to swim - which meant I had  my mobility back in my neck and to be a stronger runner than before. I have been able to swim a couple of times, so that goal was met. My neck is definitely sore after the swims, but I can do it. Based on my post assessments (the same as the pre-asessments), I am stronger than I was. I gained 4lbs of muscles. My 1 rep max on both my chest press and leg press both increased significantly. I can already tell a difference in my running on the trails. My arms feel stronger and my legs can endure longer.

I am thankful I was able to participate in such a great program. Yes, there were times I did not want to go, so it was nice to have someone to meet there excited to see you and how you were progressing. Meeting up with other cancer survivors and hearing their journeys was also inspiring.

If you or someone you know is a cancer survivor, make sure you find a Livestrong program or something similar to participate. My mom, a 5 year colon cancer survivor, participated in a similar program. She had it all during treatment: surgery, radiation, and chemo! Her program introduced her to a gym as she was never a gym goer and made her so much stronger. She continues to participate in regular classes now. If you have any questions or think I could help in some way, please shoot me a message. Going through cancer and recovery is not easy, but having an ever growing support group can only make you that much more stronger.

Running at Charlestown State Park

For the past 2 months, my running has pretty much consisted of Jefferson Memorial Forest, Creasy Mahan, or country roads by my house. These are all great training places for my upcoming trail race, but I missed checking out new places.  I was pretty excited when my trail running sister, Marian,  suggested exploring a new park recently to change it up a bit. I offered up Charlestown State Park in southern Indiana which is about a 40 minute drive for both of us. We could run all 7 trails for about 13 miles. Neither one of us have been there, so the decision was pretty easy to check it out.

We carpooled from Kentucky, traveling over the new toll bridge over the Ohio River. The bridge was just finished this past December and has made traveling to my home state of Indiana much easier for my family and I.

The park was pretty easy to find just off of 62 with a big sign out front. Since we visited during the slow season, it was free to get in the park. Otherwise, out-of-staters have to pay $9 and in-state is $7.
We grab a map at the gatehouse. The park was really easy to navigate with just one main road and signs with the trails on this main road.

We typically run with our hydration vests and fuels, but fortunately with all the trails being under 3 miles we were able to leave these in the car and hydrate after each trail. When we started running the temperature was 28 degrees, frozen ground,  so we did not have to worry about our water freezing with them in the car.

Here is a brief summary of the trails.
Trail 1: This trail is marked as a rugged 2.4m trail on the park map. The footing on here was rocky and rooty in some parts. There were some cool big rocks that the trail went through along with overlooks of the Fourteenmile Creek. My Garmin got about 2.3m with 285 elevation gain.

Trail 2: This trail is marked as a moderate 1.4m trail on the park map. This had some small waterfalls that were fun to see along the trail. We got about 1.3m with 135 elevation gain. Everything was very runnable on this trail.

Trail 5: This trail is marked as a moderate 1.2m trail. It is located in the campground area. There is a platform overlooking the creek that was beautiful to see. I can only imagine what it would look like in the spring with the spring flowers up. We got 1.7m with 148 elevation gain. It was all pretty runnable as well.

Trail 4: This trail is marked as a rugged 2.9m. This was probably my least favorite trail based on scenery. The views from the other trails were just a little bit better in my opinion. However, we were on a quest to run all the trails today and with the sun shining in our faces we kept going. It seemed if a trailed was marked rugged, it was usually because of some elevation gain as well as some tricky footing with rocks and roots. This trail came up as 2.7m with 276 elevation gain.

Trail 7: This trail is marked as an easy 0.9. It is called the Rose Island Loop Trail. We started our running watches really at Trail 3. About the first half mile was a paved, steep downhill leading to a Portersville Bridge across the Fourteenmile Creek to Rose Island. This was one of my favorite trails. Rose Island used to be home to an amusement park in the 1920s. However, with the Great Depression and the flood in 1937, it was damaged beyond repair. Signs were around this trail with pictures and stories about the amusement park. With part of Trail 3 on our watches, we came up with 1.5m  with 59 elevation gain.

Portersville Bridge to Rose Island

Rose Island sign

Remnants from where the dance hall was. There also remnants showing where the pool, cottage, hotel. dining hall were located.

One of my favorite views.

Trail 3: This trail is marked as a rugged 2.1 miles. It loops by Trail 7. Part of the trail is paved as mentioned above and the other part is on the trail. Parts of this trail were very rocky and the climb up/down could be slippery if it had been more wet. This trail came up 1.5 on our watches since we did not include the pavement portion that we included for Trail 7. This had 302 of elevation gain.

Trail 6: This trail is marked as a rugged 2.3miles located at the far end of the park along the Ohio River. It had a steep climb at the start with bigger rocks to climb through. Then we ran along the bluff overlooking the river seeing the Kentucky side of the river. We came across a bridge overlooking a waterfall that was beautiful, but no really good places that had an overlook to it. Once crossing the bridge we figured out that the Trail sign had been turned around so we turned it back and continued on a descent to run along the river. Once along the river, it was an easy, flat run back to the car. We got 2.3miles with 272 elevation gain for this trail on our GPS watch which was spot on.

Rocky climb up to the bluff.

The fun descent down to the Ohio River.

The waterfall with no good overlook to it.

This park would be great to bring the kids and a picnic or even go camping for a night or two. They did have two playgrounds and some open fields to fly kites, play ball or whatever else your family may enjoy. 

This is just what we needed as we head into taper week for our first ultra - a 60K.  I would not want to run there after a rain. As the morning warmed up and the ground thawed, there were some slick muddy spots along the trails. The climbs were easier than Jefferson Memorial Forest. We still got 13+ miles in with 1000+ elevation gain. Bonus, we got to see the Ohio River from the other side for a change. It did not even feel like a training run for me. It felt like I was just out exploring in the woods with a friend stopping to enjoy the journey along the way.

6 hour AR: Carter Caves

June 2016.

6 Hour Adventure Race.

Kidfree weekend getaway.

That is how we roll.

My husband and I signed up for my longest adventure race late last spring. This race is part of the 361 Unbridled Series. It is the first one in the 3 part series and the shortest of the three. The other two are an 8 hour and a 12 hour, both held at a Kentucky State park as well. The race consists of orienteering (navigation), paddling, running, and mountain biking. You are given a map with several points that your team needs to go find in the woods. You have 6 hours to find as many points as possible using any of those three modes of transportation with the map and a compass, but arrive to the finish line late and you get penalized. 

Depending on the race, you get the map with the points or you have to put the points on your own map. This race we had a map with them on it, plus we were allowed to use the park map with the trails on it. This was helpful for us. We placed to checkpoints on this map as well. 

We used the map the gave us plus the park map.

These races have a little bit of everything: running, paddling, biking, off-the trail exploring while hoping to not lose contact with the map plus strategy. If you are racing in teams, you want to play to everyone strengths. We are a strong running team as compared to mountain biking. We are better off leaving bikes at different points and then running. However on this race, the biking trails were also horse trails, so they were beat up. We actually did not use our bikes at all on this race. We canoed to different ends of the lake, parked our canoe and ran to several checkpoints.

Ryan portaging our canoe down a huge hill that we also had to carry up. Thanks to our friends, Salmons, for letting us borrow their lightweight canoe.

  Being out in the middle of nowhere, means there is specific gear you need to have with you to be safe. Each adventure race may have slightly different gear requirements. In this race, each person needed  headlamp with extra batteries, hydration, fuel, space blanket, whistle, and a sharpie. Each team needed a first aid kid, compass, fire starter, fully charged cell phone. For the bike portion, we needed a helmet, light, inner tube, patch kit, pump or CO2 cartridge, and bike tool. For the paddling section, we needed life vests and paddles. The longer the adventure races the more gear you need. 

Ryan getting our checkpoint. (See that fluorescent green person?)

Carter Caves was a great location for the race. It was our first time there and there were some spectacular views and arches to see. Near the end of the race, I was getting fatigued and things were all running together. As you tire, it gets harder to focus on the map to locate points. Fortunately, Ryan did the navigation. He would tell us our back stop and what we were looking for so as we ran we were looking for these things. Since I was getting tired, we headed back fairly early - 29 minutes to spare. We came in third place in our division. Not a bad showing for our first time in a 6 hour adventure race.

All packed up to head home.

361 and DINO both host 4 hour adventure races to try it out if you like in the Indiana and Kentucky area. There are several other groups that hosts these races if you just google for them. There are also orienteering clubs that can help teach you or improve your navigation skill as well. These races are usually just fun races that break up the monotony of having to follow a specific course in a running race. I definitely recommended giving it a try.

A natural bridge at Carter Caves

Run With the Amish 5k

Still playing catch-up on 2016 races while I am training for my 2017 races. How does time get away so fast?

My friend Emily and I at race packet pick up.

Prior to being diagnosed with salivary cancer, my friend Emily and I had signed up for a 5K in Ohio for a girls' weekend. My friend loves all things Amish, so Run with the Amish 5K was the perfect race.

The race was in West Union, Ohio in September 2016. We arrived Friday for the packet pickup at Miller's Bakery and Furniture store which is run by the Amish. It really is in the middle of nowhere so we made reservations at a nearby state park, Shawnee State Park. Unfortunately we did not have anytime to explore this park.

Race morning arrived and we made our 30 minute drive back over to Miller's Bakery and Furniture Store. This race was low key with no music playing at the beginning of the race which was unusual, but everyone friendly. This race also had 13.1 and 26.2 races associated with it. All of the races had zero cutoff times which is rare these days.

Our 5K race started after the other two races. We were just running for fun. Along the route we saw personal signs with everyone's names on them. There were so many personal touches throughout the race that was encouraging. The race scenery was stunning with rolling hills, farms, horses, long horns. Several of the water stops also had Amish families passing out the hydration and nutrition.

Found my name along the course.

The course was an out and back and easy to follow. A few hills, but nothing too challenging. All the finishers received homemade medals by the Amish children. And then treated to some homemade baked goods and chocolate milk.

Enjoying the finish line.

After the race we wonder around the grounds and checked out the stores. It was a fun getaway and well put on race. Unfortunately this race will not be put on again in 2017.

Part 3: My Cancer Story: Surgery, Recovery, Cancerfree

The night before my cancer surgery, I received the call from the hospital that instead of being there at 5:30am for surgery, I needed to be there at 10am. No big deal, but was looking forward to just waking up and leaving.

The morning of Tuesday, November 8 (which also happened to be a historical election day), I got up and showered, preparing for surgery. I received another call from the hospital asking how soon I could be there, there was a cancellation. In about 5-10 minutes, after that call, we were on our way to the hospital where they were waiting for me.

Before I know it, I am all prepped and ready for surgery. The surgery took 4-5 hours. They removed the superficial lobe of my parotid gland and about 10 lymph nodes from behind my ear. My head was wrapped up like a mummy. When I woke up, Ryan was there waiting. The nurses brought me some broth that was about the worst tasting stuff I had ever tasted. Fortunately, my friend, Marian, visited and brought me the best homemade chicken broth ever. The pain medicines did a great job. Marian, Ryan, and I just hung out for a few hours watching updates on the election. It was a great feeling to be on this side of the journey.

My husband by my side after surgery

 
I had one night stay in the hospital. The pain meds continued to keep me feeling good.  Something happens when you leave the comfort of the hospital. I do not remember much from the first four days of recovery. I remember feeling about the worst pain ever trying to swallow. Medicine was getting stuck in my throat. I had to build myself up to swallow - so drinking, eating was painful. I was either sleeping or trying to eat. My mother-in-law and aunt helped out the first few days of my recovery. I had no idea I would need two people. But between my 3 kids and myself, they were busy. They ran to the store several times, trying to find things that tasted good that I could keep down.

Then the worst day I have ever physically felt happened. I could not hold anything down in my stomach. My throat, my incision site throbbed. I could not keep pain meds down, antibiotics down, water, broth, anything. Finally, we realized it was the pain medicine causing the majority of my side effects. Once that cleared out of my body, I was able to feel human again. Unfortunately, it wasn't before I threw up  in front of my friends that were helping.

Through it all, I learned something. On the physically worst feeling day of my life, I saw so many of my friends and family that loved me. I was not alone. They had no idea what kind of shape I was in when they stopped by. But they offered helped that day which I accepted. Everyone offered something that they could do to help out and all my needs were taken care of as well as my family. What an amazing feeling! God is continuing to take care of all my needs before I even knew.

The worms aka stitches

About a week later, I returned back to my surgeon to get my stitches out. I had around 40. My daughter, age 4, said I had worms because how the stitches were done. Dr. Bumphous told us immediately that they were able to remove all the cancer. The margins were clear. I am cancerfree!
After we finished up at the doctor's office, my husband and I, plus my friend, Marian, joined us for  a celebratory lunch at the Troll Pub.

It never occurred to me that I would be getting a cancer free report. I was prepared to recover for a few weeks and then start radiation. Needless to say I was ecstatic to hear this news. I could now focus on a full recovery. I still had swelling, numbness, and limited movement in my neck. However, I had all this with my first 'minor' surgery a few months back. I knew I could get through it.

All the stitches removed

Three weeks after surgery, I went for my first run. It was tough, but it was a great start back into running. A month after my surgery, I revisited with my surgeon who congratulated me again and said my recovery was going great. I do not need to go see him again for another 6 months. Also 4 weeks after my surgery, I started the Livestrong Program at the YMCA. I still had limited movement in my neck, numbness, slight swelling, but making progress. The adventures in the Livestrong Program will be forthcoming in another post.

I just want to thank everyone for all their support and prayers through this cancer journey. Having gone through it, I am better prepared to give support and help to others which I look forward to doing, but pray that I do not have too. I do not want any of my family or friends to have to go through their own cancer journey.

I am currently less than a month away from my 'reventure' of my first ultra race. I recently ran an unsupported marathon with my friend, Marian, faster than I did my trail race last fall with similar elevation. Cancer was a small blip in my year last year. It sidelined me, but did not overtake me. More adventures are to come.

8 weeks post surgery. 16 trail miles in 10 degree temps with Marian.

Part 2 my cancer story: Mucoepidermoid carcinoma

After my ENT told me I had mucoepidermoid carcinoma - salivary cancer, I lost it. The tumor was attached to a muscle in my neck, it was fragile, and burst during the surgery. He told me this was not normal. The pathology did not have clean margins meaning I was just beginning my journey. He had already set me up with a oncology radiologist in the same building. He said he had already talked to the radiologist about my case and is expecting me. My ENT also told me he was surprised by the pathology. If he had known or thought it was cancer, he would have done the surgery differently. So. much. to. process. Before leaving the building I setup my appointment with the radiologist for the following Tuesday - the day after Labor Day.

Now I had to start spreading the unexpected news starting with a call to my husband in the car. The hardest call I have ever had to make. With today's technology, I still wanted to call my parents, brother, and best friends. Nothing like telling people you love, you have cancer. You can hear and feel the mood change drastically over the phone. Then contacting a few through texting as well when a phone call isn't going through....Knowing they are instantly right there with you in the cancer journey - supporting, praying was all I needed.

Then it hit me and research began. Salivary cancer is rare - less than 1% of all cancers diagnosed in US. My kind was the most common. A male in his 60s is most likely to get this kind of cancer.  There are lots of theories of what may cause this, but nothing conclusive. Radiation, however, can be a cause of head and neck cancer. Ironic isn't that radiation was the first thing recommended to me? I read that surgery and radiation is typically used to treat my type of cancer. chemo isn't a known treatment unless it is high grade salivary cancer. (info from Acs)

Armed with knowledge now, I knew I wanted to seek some other opinions. Not having grown up in the area or ever been in this position, I had no idea here to begin. So I began asking my fellow cross country coaches. One of them had worked with and was friends with an ENT surgeon (head and neck cancer experience) at U of L that he offered to contact for me. I was able to get an appointment with him the day after my radiation appointment. I thought I was all set!

From my initial appointment with Dr. Birkhead, the radiologist, I learned I was stage 1, low grade carcinoma. He recommended radiation of course. He mentioned a few side effects, but didn't worry about any long term effects. He said another surgery was not needed. After leaving there, radiation seemed pretty straightforward. I even got my mask ready that day! I also set up my PET scan for the following Monday.

mask for radiation

  The following day I met with Dr. Bumphous, the U of L ENT surgeon. It was a 2 hour wait because they worked us in and we ended up being their last patient of the day. He agreed that it was stage one. But didn't want to say what grade until he did another pathology. He recommended surgery on what he knew so far. He wanted to meet again after I had the PET scan and the results of the second pathology.

Finishing our trail marathon

The weekend after these meetings was my trail marathon in MN with my friends. Perfect timing. A fun weekend. (a blog post to follow in the near future about this race) I remember getting on the bus to head to the start line and the race volunteer came up to congratulate us and to be grateful for everything we have - including our health. That was a hard thing to swallow because I didn't feel like I did have my health. I was still running 26.2 miles with 5000+ elevation dealing with a knee injury, just recovered from 'minor' head and neck surgery - not having full mobility of my neck yet, and finding out I had cancer. It is all about perspective. I made it to the start line.

The race was great. I was not ready to stop running because then I knew I had the PET scan the day after I got back home.

I revisited all the specialists after my PET scan. The good news that the cancer was contained to that area. There was some activity in front and behind my ear indicating possible cancer. It wasn't conclusive because inflammation also shows up in these type of scans. These results did not change anything that the radiation dr had previously mentioned to me about treatment except expanding the radiation a little bit more to hit those areas that showed 'activity'. It was be 6-7 weeks of 5 days a week of treatment. I can start anyday. We did not want the chance of cancer coming back as it comes back meaner and more aggressive. With the results of the second pathology and the PET scan, the surgeon thought the cancer was intermediate grade. With this upgrade, he suggested radiation or surgery would both have the same result of eradicating the cancer.

UGH! Radiation vs. Surgery. We get to make the call. How do you do that? Radiation has lost of taste and long term effects: dry mouth affecting the teeth, possible cancer again. Surgery deals with the facial nerve. And if there isn't clear margins, radiation would have to happen anyways. We ended up getting a connection to a doctor at Dana Farber in Boston. We flew out there for two days one night. We were able to meet with a team: medical oncologist, radiation oncologist, and a ENT surgeon. They would help us make the decision. They said that the first surgery was not seen as an oncological surgery which is the first step in treating this type of cancer. Also I am still young enough to possible see side effects from radiation. With this information, I called Dr. Bumphous to scheduled my surgery for Nov. 8. 

Dana Farber in Boston