PPRAC – Part 2

The van ride from Palmerton, PA to Burlington, VT was uncomfortable. I don’t like riding in vans, sometimes I get car sick… especially when I haven’t eaten anything. Plus, there was a non stop downpour the entire way. I would have preferred getting on the charter bus but the van had all of our friends in it. Well, actually, I barely knew most of them. There were ten of us and most of them were very advanced and experienced cyclists, friends of my brother and Elk. It was fun getting to know them better and we told jokes most of the way there.

We arrived in Burlington before the bus so we were able to stop at a brew pub for our pre-dinner. My awesome coach had instructed me to eat as much possible for the 48 hours prior to the ride. (yes!) They had cask conditioned ales. I had one. I wanted two. I wanted three. I wanted to pretend I was on a normal vacation where you have lazy mornings. Instead, my stomach filled with dread. I thought about the drive up. It took something like 6 hours on the highway. How on earth was I going to ride my bike all the way back home??? I allowed myself one beer and sipped water while everyone else (the experienced cyclists) drank their second.

Next, we made our way to the Burlington YMCA, aka our home for the night. I pulled out my new mattress and my new bins and built a little fort against the wall. Elk decided to sleep upstairs on a track that went around the gym. I was too afraid I’d roll off so I stayed downstairs with all the other people while Elk slept on the track with the bikes.

At dinner, donated by the VFW (I think) we had some yummy spaghetti and salads. We got to know each other. All of the newbies stood up and spoke about why we were there. A few folks got teary. When it was my turn, I mentioned my friend Sean Patrick and oops, I started to cry a little. Elk was next, he spilled the beans that he was there for me because I was a two time cancer survivor. It was emotional for sure. Then came the news…. we had to get up and out of the gym by 6am to start our day. I decided to take ½ sleeping pill at 6:30pm to ensure I was rested. Our first day was to be 93 miles. I was in bed and asleep by 9:30.

Waking up was not so easy, but it never is for me. I don’t like the mornings but we had to be out before the YMCA members streamed in for their 6am yoga class. (Really, why do people go to yoga that early? I mean, come on!) We rode through town looking for coffee. Everyone stopped at Starbucks. Yuck. We searched until we found Dunkin Donuts. This made Ekj and I the last to pull out of town. Not an ideal situation since we'd likely be the slowest riders.

I was nervous but started to settle in.

The roads were absolutely beautiful. I remember passing a field of sunflowers. Gentle rolling ribbons of road.

Eric Loch, who is in charge of setting the route and developing the cue, sheets is a very talented man. The roads were nearly car free and very smooth. It was easier than I thought. I felt great! Elk and I teamed up with Maurice, the co-founder of Dirt Rag who was not in any way interested in racing along. In fact, Maurice is a very interesting guy, more on that later.

When we were about 70 miles in we passed a beautiful lake. It was hot. A beautiful day to jump in a lake I thought. And when we saw there was a beach we couldn’t resist! We pulled off and jumped in!

Well, we waded in... we decided it best not to ride the next 30+ miles in wet shorts.

Unfortunately, we did not realize that our support crew was keeping such close tabs on us. We got them worried sick… when we were at the beach they couldn’t find us. They ended up driving up and down the roads looking for us. I felt terrible but learned my lesson.

The last leg of the ride into NY state included a ferry ride!

That night at dinner (spaghetti donated by the lions club or the elks club or maybe it was the American legion? I LOVE spaghetti and could eat it every night!) We learned that everyone was shocked at how easy the route was. I had thought it was very challenging and started to feel nervous again -I dreaded their definition of "hard". I learned that more hills were in store. Still, I was proud of myself, 93 miles was my longest ride ever. Plus, I also logged my fastest speed… 42.7 mph. Elk and I set up the tent and slept outside. My right knee ached. I took some Alieeve and pretended it didn’t.

The next day I was still feeling pretty strong. I ate a big solid breakfast, donated by another righteous cancer hating group of folks. This time I know it was the Elk's club because I took a picture of Elk under the Elk clock.

It was also goofy jersey day (obviously).

I hopped on my bike with Stacy ahead of most of the crew. We knew they’d catch up with us. At mile 3 I noticed a toilet on the side of the road. I was a little bit ahead of Stacy. I knew she’d pass me if I used the toilet but figured I should be able to catch her if I did my business quickly. I caught her around mile 4 where I saw her stretching on the side of the road. I remembered from the meeting the night before that a hill was coming up real quick. The cue sheet said something like “nice down hill in five miles”… I took that to mean that we were about to get on a five mile horrible up hill.

I was right.

I didn’t want to lose any momentum so I kept pedaling. The hill was no joke. I felt pretty good, well, except for that ache in my right knee that I was ignoring. I even passed someone. As I rode up behind Bill Moses, one of the toughest dudes I’d ever met in my life. I saw the young man’s picture on his back. I became overcome with emotion. Each day Bill rode with a different picture on his back, dedicating that day’s ride to someone who had been affected with cancer. Bill also chooses to ride in gym trunks and a cotton T-shirt. For those of you who don’t know, cyclists wear those funny tight shorts for a reason… because they are padded! To wear gym shorts six days in a row for nearly 100 miles a day is absolutely insane. But Bill is one strong dude.

Oh, and I should mention that Bill is scheduled to have knee replacement surgery in November. That means that his knees are shot. Bill did this entire ride in extreme pain. His determination was inspiring for sure.

Back to the five mile hill... Around mile 4 of that hill I felt a push… it was my brother. He pushed me as he rode by in a pack with the fast people. I felt his support and I jumped onto the back wheel of his buddy Dave.

Soon we were at the top with our support crew, Taylor and Trisha. Dave and Jeff flew down the other side. I decided to wait for Stacy, Maurice and Elk. I was super stoked that I was able to ride that big hill. I was also really happy that everyone was saying that this was more like a real PPRAC ride. I had been worried that people were going to say it was too easy again…

Elk and I rode the rest of the route together. I think this was my worst day. It was a short mileage day so I thought I’d be back early enough to go swimming at the lake near our final destination. We weren't. Lunch was about fifteen miles further than we thought it was going to be. We were the last ones to show up. That is hard on the spirit. After lunch was a false flat in a head wind for what seemed like forever. I had been asked to speak about my experience with cancer at one of the evenings’ meetings. This is when I wrote my speech.

When we arrived to the middle school I found all of the regular super fit fast people in the Ryder truck that followed us with our gear. We had a real nice system set up. Since we stayed at schools, we used the inside of the unpacked Ryder truck like a bar… though most nights I didn’t drink more than a sip of beer. I jumped in the truck and nearly cried as I iced both of my knees. I was in some serious pain and there was no ignoring it at this point. My right knee felt like it was made of shards of glass held together by thorns. My left knee felt similar. My brother signed me up for a massage.

This was the day my father joined us. My dad worked support for the rest of the event.

For dinner we had pizza. I knew I was going to speak after someone named Dennis. Dennis is a 67 year old who signed up for this ride -which absolutely amazed me. He spoke about when he was diagnosed with Lymphoma 9 years ago. He was probably the best public speaker I’d heard in a long long time. Everyone shed some tears. He quoted Churchill! He got a standing ovation. Next it was my turn. I forgot everything I was going to say but I knew I wanted to get it over with so I didn’t have to think about it any more. I think my speech was ok. I forgot all of my jokes though. I like to be funny but I think I made everyone cry even more. That's a drag.

We spent a lot of nights on this ride talking about cancer and crying. I didn't like that part. I know it is important to think about the reason we are all riding. It makes it more meaningful. I just hated being reminded about how deadly this disease is.

PPRAC Ride - The Prelogue.

It's been about a month since I returned from the 540 mile Pennsylvania Perimeter Ride Against Cancer (PPRAC). And I'm still not sure I have the words to articulate the experience.

Before August 3rd, my longest bike ride was 80 miles, and that was only once... the week before. Prior to that 80 miles, the longest I had gone was 50. To say I was nervous about this ride was an understatement.

I decided to do the ride two years ago when I met my parents and sister-in-law at a church in Palmerton, PA to greet my brother as he rolled in on two wheels from Erie, PA. There was a big dinner and a ceremony. In typical little sister fashion, I wanted to try what my brother had just done. At that time, though I was in great condition from climbing, I wasn't riding the bike much other than my 2 mile daily commute to work. I didn't even have a road bike.

I committed and got a bike. Last summer I even completed one of the various charity rides from Philadelphia to the shore. 67 miles. Flat, but straight into head-wind. It was so hard and my knees hurt for two days. I did learn some lessons on that ride. 1. Avoid people who have Lockheed Martin jerseys on and tri-bars.(they want to run you over) 2. Training and preparing will make my knees hurt less which will make me much less miserable. 3. I also learned the powers of drafting and Elk, my husband, has a very steady wheel. Drafting is when you ride right behind someone else's wheel and reduce your effort by about 30%. But you've got to be sure to get behind someone who is very steady, if they make a jerky move and you touch their wheels, you are going down.

I knew that I needed to start training. My plan was to do some mountain biking in the winter and longer road rides as the weather permitted. Then I got the news I'd need surgery. Then I got the news that cancer was back and I'd need chemo. Then I got the news that I would likely never get better. Then I got the news that was a mistake and my cancer was an early stage and I'd likely get better, they think --- they never really saw this before. Ugh.

The good news is that I knew that I'd only have 6 treatments of chemo and that would be finished in January. I did really well during chemo in 2005, treatments would keep me down for a week but I was able to rock climb nearly every day on the two weeks between my treatments.

I didn't finish chemo treatments until March. And I couldn't do much during treatments other than knit. It was much rougher this time.

But--- the good news is that I FINISHED. And I got a clean bill of health in May.

I spent the few months riding as much as I could... but between work and rainy weather it wasn't as much as I would have liked. Plus, just because chemo stops doesn't mean that I'm back to 100%. My energy levels were low to say the least.

There were times when I'd ride my bike and I'd be in so much pain. I'd be exhausted. I'd look at my odometer and see that I had only gone 40 miles. I'd burst into tears. How would I do 100 miles a day! I spent a few days seriously considering dropping out. I wondered if the folks who already donated to my fundraising page would be disappointed in me. I thought about going to the ceremony at the end of the ride, did I want to be a spectator or did I want to be a participant. I realized that being a participant, even if I didn't finish the whole ride, would be much much better than standing on the side lines. Determined, I wiped away my tears.

In June I got myself a coach. We knew we had a lot of work to do with a limited time to do it in. He wrote up plans for me every week. I don't think I could have done the ride without Chris Mayhew. Thanks Chris!

Soon enough, it was August and my brother's family was back from Belgium. Here is a picture of all of us before we got into the van for the 6 hour drive up to Burlington, VT. We're going to ride our bikes back? That's insane! I did what I do best in stressful situations and I knit myself a hat on the ride up to VT.

This photo was taken in Palmerton, PA before we left. The four adults all rode our bikes. My dad who is not in the photo joined us in the support vehicle.

There is no place like home.

Well, it's been a few weeks since I've last posted.

The surgery went well. Unfortunately, they did find ovarian cancer again in my right ovary. The surgery was very thorough and included full staging procedures. I now have no reproductive organs which is very sad. But I can't spend too much time sad about it, looking on the bright side, I don't have a cancerous tumor inside me either.

I was in the hospital for three days and then recovered quickly at home. Ten days after surgery I was walking around my neighborhood and really feeling like I could do almost anything (with lots of naps in between.) My plan was to spend the next week working on getting things together before I start chemo on 10/14. Unfortunately, that plan didn't work out too well.

Since I was feeling good, I decided to cook dinner on Monday night. The doctor's all had told me to eat normally when they released me from the hospital ten days earlier. Sadly, they didn't explain to me that my idea normal and their idea of normal were two different things. That Monday, I made roasted cauliflower as a main dish, roasted carrots as a side dish and we had zucchini bread for dessert. I had no idea these are some of the hardest foods for a person to digest. I had no idea I should be eating more mild foods.

Apparently, during the staging process in surgery they inspected my intestines very carefully. This means that they took them out of my body and ran them (think like you are flaking a climbing rope to see if there are any kinks, knots, or soft spots-- they doing that to my intestines as they looked for tumors). No one told me that this can cause adhesions, obstructions, swelling and a general rebellion of the intestines. No one told me that I should be mindful of my sensitive intestine when I chose foods to eat.

I became violently ill and spent the past four days in the hospital getting re-hydrated.

The experience was nothing short of awful. I am not used to being so sick for so long. The worst part was that each day, they thought I'd be able to go home but then I couldn't. I'd get my hopes up and then become very sad. The time in the hospital was very dark for me. Fortunately, they finally let me home today. Already, I'm feeling so much better. I can do things like cook myself rice rather than have a plate of spaghetti and meatballs put in front of me as my first meal in 36 hours. (Was the hospital trying to kill me?) Plus, just breathing fresh air is helpful. Yes, I know it is Philadelphia air, but at least it isn't a controlled climate!

The best part is that I'm going to be able to attend my brother's family's going away party tomorrow night. They are moving to Belgium at the end of November so they are having a huge blow out. They expect 140 people to attend. The party is at their house. They got a band (bluegrass), a moon bounce for the kids (and adults) and a mobile bathroom! There will be a ton of relatives who I hardly ever get to see. During my lengthy stay in the hospital I was envisioning having relatives from out of town stop by to see me in the hospital on their way to my brother's. This thought depressed me so much. But the good news is, I'll be at the party! I probably won't have a beer and will pack my own dinner, but I can still be at the party!
Then on Sunday, I get to go to my friend Anj and Sue's wedding. This is something I'd been looking forward to for nearly a year. I'm so glad I don't have to miss it.

So, it's been an exciting week of sitting in the hospital bed watching the hours slip away. I'm exhausted from the experience so I'll close here saying there is no place like home.

Soon I will post about my prognosis and treatment plan for the cancer. As far as cancer goes, I couldn't have a better situation. So it is good news.

Climb 4 Life - HERA FOUNDATION 2008.

I raised $10,076 dollars!

For photos please go here...

A few days after I heard that I needed surgery I left for Utah to participate in the 7th annual HERA Foundation's Climb 4 Life event.

The HERA Foundation is dedicated to raising money for funding cutting edge research, awareness campaigns and community patient programs for ovarian cancer. I've been an Ambassador for the HERA Foundation for the past year or so.

And so it began ...again.

Earlier in the summer I started to have symptoms of cancer recurrence. Mostly the symptoms were bloating and feeling full and pains in my side. I went to the doctor. Turns out my CA125s went up to 33.

You probably never heard of a CA125 test. It isn’t a good test and it is not used for the general public. It could go up for benign conditions (such as pms) and conversely it could fall within the ‘normal’ range while someone has stage four cancer. That said, in my past experience with ovarian cancer back in 2005, the marker seemed to be a good indicator. It was 3904 before I had my surgery, it was 75 before I started chemo and hovered in the 20s for the next three years.

When it jumped to 33, my doctor wasn’t “particularly concerned” but it was worth an ultrasound since it had never gone that high before. The ultrasound showed two small cysts that looked normal. The bigger one was 2.5 cm. It is normal for women to get cysts regularly. Cysts become concerning when they are complex (blood flow, threads of tissue) vs. simple (clear). These small cysts weren’t “particularly concerning.” The doctor said to come back in two months.

Two weeks later I called the doctor’s office and complained of more symptoms. She told me that everything came back normal and to give it two months as the doctor said.

I thought about what she said. I thought about my diet. Could my recent problems be indigestion? I had been eating nuts every day. Every time I get a little nervous about recurrence, I start eating healthy food. I wondered if this change in diet maybe caused more symptoms that I confused with cancer?

About a week after that, I decided I was crazy to put my instincts on the back burner. I had an old photocopy of a blood work order and decided I’d use it. What was the worst that could happen? The insurance would refuse to pay for it since the doctor didn’t order it?? Well if that was the case I decided I could deal with the $350. I consulted with one of my mentors, Sean Patrick, the founder of the HERA Foundation. I came to the conclusion that I needed to listen to the advice I so often give women in my work with the HERA. I took that old bloodwork order and went for my CA125.

It came back at 55. It had gone up 22 points in four weeks. 22 is a normal level for me. It doubled from my normal level. I dropped the phone when the nurse called. I hated that number. 55. Even worse, I couldn’t get that annoying Sammy Hagar song out of my head... “Gonna write me up for 125, Post my face Wanted Dead or Alive. Take my license and all that jive... I can’t drive 55!” It was an awful day.

The nurse sent me for a CT scan and an appointment with the gyn-oncologist the following week.

The CT scan revealed that the mass on my right ovary had grown to 6cm. It looks contained. It could very well be a benign condition. No one will know for sure until surgery.

Surgery is scheduled for September 24th 2008.