Monday, August 31, 2009

Pelotonia/Headed to NYC

The weekend flew by, and I didn't have time to blog like I had planned. The bike ride went great! Our four riders stuck together and finished the 50 mile ride in about 4 hours. They had great weather and were raving about how beautiful the ride was. Megan, Ethan, and I were up early and saw them on the course shortly after the ride began. It was great to see all of the riders go by; it was unbelievable how many riders were involved, and it was people of all ages and experience. There were people on fancy bikes, all decked out in cycling gear, and people on old-school bikes without gears. There were people riding on tandem bikes as well as recumbent bikes. Jack got some good pictures of Lance Armstrong as he rode past them before the start, all decked out in his Livestrong gear. We missed him on the course, because he had already flown past before we arrived at out post.

The event was run with amazing efficiency. When the riders finished there was a barbecue lunch waiting for them. Their bikes were loaded on trucks and buses transported the riders back to the starting area. No one in our group had any injuries or crashes, but they did see a few along the way. None looked serious except one, where a gentleman was taken away in an ambulance, although they say he looked like he was going to be okay.

They said the ride actually ended at 42 miles instead of 50. They were disappointed and so geared up to ride 50 that they just kept going and made it a 50 mile ride! Go Team!

Saturday night Kristin and Jack hosted us for a barbecue with some additional friends and family, and it was a great weekend. Good food, good fun, and a good fight against cancer!

We are now getting ready to head to the airport here in Columbus to fly to NY with the Corporate Angel Network once again. This time we will return home in the same day, so we will be back here in Columbus at about 9 pm. It will surely be another long day, but a day spent killing cancer!

Livestrong!

Friday, August 28, 2009

Pelotonia--Day 1

I am writing this blog from our hotel room in Columbus following the opening ceremonies of Pelotonia. I am trying to type quietly because Ethan is sleeping in the Pack & Play next to our bed. We had a long day travelling down here with Ethan, and getting to the event, but it was well worth it. Besides this being a great event, something else pretty amazing happened for us as well; we got to meet Lance Armstrong! Yes, you read that correctly, we met Lance Armstrong.

Megan and I found out yesterday from my family that I was on a list of individuals that might get an opportunity to meet him. While I have not heard the whole story, it sounds like my parents, Kristin, and Jack have put in a lot of time contacting the Pelotonia staff to share with them my story. In the end, someone felt my story was compelling enough to be one of ten individuals with the chance to meet Lance and have a photo taken with him. It wasn’t even confirmed until last night.

We were scheduled to volunteer at 6:00, but that was all changed when we were rescheduled to meet Lance at 6:15. Megan and I in our Livestrong shirts, and Ethan in his Livestrong onesie, had several photos taken with him. Ethan walked right up to the edge of the stage at the front of the empty auditorium where Lance was sitting, and began banging on the stage next to Lance. Ethan is comfortable being himself, no matter what the environment! Lance was very nice, spoke to me a little about my treatment, and complimented Ethan on his Livestrong onesie. It was a brief, special moment, and I am glad that I got to personally thank Lance for all that he has done to inspire and help those of us battling cancer.

Tonight’s opening ceremony was quite a show. Pelotonia has raised over 4 million dollars for cancer research, and 100% of those donations go to research. I am very grateful to the many people that have supported our family by donating to our team. We have now raised just over $12,000! Thank you so much! Lance spoke at the opening ceremonies, as did several other dignitaries, and the message was the same. We are going to beat cancer! I hope you all know that you are helping me beat cancer, and this weekend, we are making big strides to find the cure.

I will try to keep posting this weekend to keep you all updated on the activities down here. The riders will begin their ride at 7:30 in the morning, and we hope to be there to send them off.

Livestrong!!

Thursday, August 20, 2009

Wind in the Hair and Chasing Birds

At the end of another long and challenging week, once again it is Ethan that reminds us of the joys of this life.

We had a good trip to New York this week, but the travel and the chemo is exhausting. First we had an appointment on Friday in Ann Arbor to check my white blood cells. They were just slightly low, so I spent the weekend giving myself injections of Neupogen to build my counts back up. We drove down to Columbus on Sunday, and had another nice evening with my sister and her husband. We were then at the airport by 6 am Monday for another corporate flight to New York through Corporate Angels.

I cannot say enough about Corporate Angels, and the corporations that participate with this service. They are truly angels! Travelling 1200 miles for treatment every other week is exhausting no matter how you look at it. This service removes so many of the usual hassles of travel and allows us to focus on the treatment. It is great. We were at the hospital in NY by 10:00, a feat we could not have accomplished on our own.

Things ran much smoother this week, and we were done with treatment by about 4:00. We stayed in the city this time, at a place called The Miracle House. This is another organization that owns a few apartments that they make available to cancer patients for a very low fee. They are 3 bedroom and 2 bath apartments, and we had one to ourselves. On this trip, we were so tired, we just ordered a pizza and were in bed by 8:30.

The return trip was just as smooth as the last trip. My friend Seiji picked us up and drove us to the airport once again, and this time we had the pleasure of meeting his wife and 18 month old daughter. Thanks again Seiji!

I felt the effects of the chemo much sooner this time around. I still thankfully have not been sick, but I don't feel quite like myself. My stomach has been on edge and my neuropathy is increasing. With these drugs the neuorpathy is cold-induced, so I have to keep socks on my feet or the cold floor in the basement or bathroom can increase the numbness in my feet. It also can occur in the throat, so if I eat or drink anything cold my throat goes numb. It is a very odd feeling to say the least. It already seems to be subsiding, but I still am drinking warm milk and water. No more ice cream for me for awhile!

My tumor marker continues to go up, but it is too early in this treatment to determine what that means. Certainly if the cancer continues to grow, the tumor marker will rise. On the other hand, if the chemo is working, tumor cells will be dying, which may also cause the tumor marker to rise. It is a process called 'cell lysis', in which the tumor cells burst thereby releasing the tumor marker HCG. So we could see an initial rise in the tumor marker even if the chemo is working. We will have a better idea what is happening in a few weeks when I finish the first round of chemo and have another CT scan.

All in all I am feeling good. I am more tired than I was with the last infusion, and the side effects are more pronounced. It has been a long, challenging week because of this, as well as some other factors in my life. We have made it through the week though, and yesterday Ethan again reminded us to to enjoy the wind and God's creations. We took Ethan to the Lake Erie Metropark late in the afternoon yesterday. It was a windy day, so once again he found joy in the mere fact that the wind was lifting the hair up off of his head. A joy that I can no longer partake in, but I can share in Ethan's amusement. He ran throughout the park, chasing seagulls. He loves birds and squeals with glee as he runs towards them before the fly away. It was a beautiful afternoon by the lake.

I sat and watched Megan chase Ethan chasing the birds, and thought what a blessing to be able to enjoy moments like that. The world looked so vibrant; the blue of the lake and the sky, the green of the park, and the contrast of the white clouds zooming by in the gusting wind. There were ducks and geese playing in the water, martins beginning to buzz around feasting on the bugs, and seagulls both playing in the wind and running from my son. How many times have I taken all of that for granted. In the middle of this wonderful scene was Ethan, not worried about the challenges of the week, not thinking about what tomorrow may or may not bring, just totally enthralled in the moment. I doubt he had even thought about what to do if he caught one of the birds, he was just thrilled to be chasing after them.

I have written many times about living in the moment, and yet it is still a very difficult thing to do. Ethan keeps taking my hand and trying to lead me there, and I guess I will just keep trying to follow his lead. None of us may be able to stop the world from swirling around us, but maybe we can find ways to pause momentarily and enjoy the simple blessings of life in this beautiful world.

Livestrong!

Tuesday, August 11, 2009

We are doing Great!







We are all doing great, and having a good week at home. I have been feeling well since last Thursday. On Friday I felt pretty much back to normal, and am feeling great this week. It is nice to have a week at home without any trips to NYC, and with minimal appointments. I will get my blood checked on Friday in Ann Arbor to make sure my counts will allow me to have chemo on Monday in NY. I took the week off from running last week, but have gone twice this week.
Ethan is doing great, and ate his first corn-on-the-cob yesterday. He absolutely loved it! He continues to be very active and is beginning to eat us out of house and home. I don't know where he puts it all, but he is a bottomless pit.
We are using this week to relax a little bit, and to regroup after a couple of hectic weeks. We will be headed back to NY on Monday, and hope to fly with Corporate Angels again out of Columbus. We will find out on Thursday if they have a seat for us.
Until then, thank you for checking in on us and keeping us in your prayers.

Thursday, August 6, 2009

Happy Birthday Ethan! Happy Anniversary Matt!

(Of course, I always forget to upload pics in reverse order, so starting from the end of yesterday to the beginning of the day, here are pictures of Ethan's first birthday. Also, due to technical difficulties, the captions come first, followed by the photos.)

Ethan - oh, yeah, bring on the chocolate cake!

Janet - we tried REALLY hard, but Ethan just wasn't having any of his birthday hat! We think it's cute and we'll try again next year (we'll just add a 2!).

Gigi & Papa (Ethan's great grandparents), grandma & grandpa and Matt & I got together for an impromptu birthday celebration. Uncle Torren joined us for cake & opening presents. Nothing is ever set in stone around here anymore, as we just don't know how Matt will feel after chemo.

Ethan fell asleep before we could get a photo of him on the elephant. It's a tradition to get your photo taken on the statues at the Toledo Zoo.

Gigi, I'll carry your hat!

Our busy bee - Ethan loved getting up close & personal with the animals (goats, guinea fowl, bees, spiders, birds, etc.) at Nature's Neighborhood at the Toledo Zoo. Nature's Neighborhood is the zoo's new attraction - petting zoo & activity center for kids. I highly recommend it to the folks out there that have kids that would enjoy arts activities & getting close to animals. They have specific times for activities, so check it out early before your visit.

Finally, Ethan started out yesterday at breakfast eating a bowl of oatmeal, half of banana, 2 blueberry pancakes and juice. I think we're going to go broke feeding this kid!

To my Matthew, Happy Anniversary! There's no one else I would rather be with in a car, on a plane, on a bus, on the subway and in a coffee shop in about 3 hours than you! All my love, Megan









NYC, a Birthday, and an Anniversary.

Megan and I had a good trip to New York, but it was exhausting. The travel was very easy. We flew with Corporate Angels, an organization that matches cancer patients with empty seats on corporate flights. We flew out of Columbus, so we spent Sunday night at my sister's house. It was good to visit with them.

We arrived at the hangar in Columbus at 6 am Monday morning. We were on the plane at 6:30 and in the air by 6:40. There was no security or waiting in lines. We just walked out on the tarmac, up the steps, and picked a seat. They even served us breakfast, something that is now lacking on commercial flights. We landed in NJ at 8:00, fifteen minutes early, and about ten minutes later they had already dropped us off at the bus stop. We hopped on the bus to Manhattan, transferred to the subway, and were in a coffee house a block from Sloan Kettering by 9:30. It is hard to believe that we covered 600 miles of travel involving a plane, a van, a bus, and a subway, in just 3.5 hours!

The rest of the day was not as efficient. We arrived at SK at 10:30 for my 11:00 appointment. We were informed that the doctor was running behind because another patient of his that morning had to be admitted to the hospital for an emergency, and he had gone with her to the main hospital (which is a block and a half away). When he returned we gave him my pathology slides from St. Joe, which he then had to take back to the main hospital to review them. So after sitting there for 2.5 hours, we were finally taken back for our appointment. The doctor was very apologetic, and tired from running back and forth the the hospital. He spent some time with us going over the treatment and the treatment schedule. He answered all of our questions and examined me again. I had my blood drawn once again and everything looked good for the study. I just had to wait then to be registered for the study. They could not complete registration for the study until they had all my data, including the pathology slides and blood drawn that day. Normally registration takes 20-30 minutes, but of course that was not the case for me. It took them a couple hours, during which time we ate lunch. It sounded like since I was the first person participating in the study it took them longer to register everything in the computer. After registration is complete, then the pharmacy mixes the drugs, so we finally started chemo around 4:30/4:45. Chemo took 2 hours, as planned! It was pretty uneventful.

We left the clinic about 6 pm, and headed out to meet friends Jamie & Emily for dinner. We ate at a NY pub called PJ Clarke's that opened in 1844! It was a very cool place on 3rd Ave. at 55th Street. The food and atmosphere was great. We lost track of time a little bit, and had to beat feet to the subway to catch our 8:50 bus back to NJ (the next bus would have been at 9:50). We made it aboard with about a minute to spare. We actually met a friendly New Jersian on the bus whom helped us find our stop, and our shuttle to our hotel. Then we crashed!

We were up early Tuesday morning. Seiji joined us for breakfast at our hotel and then drove us to the airport. Again, we just walked right out and onto the plane. On the flight to NJ there were about 15 people on the plane, which seated 44. On the way back to Columbus, there were 5 of us, so it looks like our chances are pretty good that there will be empty seats for us in the future. It was amazing how hassle free the trip was, just very tiring.

We will be headed back in 2 weeks. We have our next 3 appointments schedule, all of them on Mondays. That will take care of the first round and the first appointment of round two. We will go to AA at the end of the weeks prior to appointments in NY to have my blood counts checked to make sure they are not too low. This will save us a trip to NY only to find out I can't have the chemo. After round 1 I will have a CT scan in AA and then may schedule a biopsy in NY prior to the start of round 2. If all goes well, we will continue with the biweekly trips to NY until the cancer is gone.

I am feeling good today. The last two days I have had a little uneasy stomach. I have not really felt sick, just not 100%. I did feel well enough to spend the day at the zoo yesterday for Ethan's birthday. He loved it! Ethan loves birds, and was fascinated by some of the exotic ones at the zoo. He also enjoyed petting the goats in the petting zoo and the fish in the aquarium.

Today we celebrate our fourth Anniversary. We have been resting this morning, but plan to go to a movie and dinner this afternoon. It has been a long week already, but we have much to be thankful for this week and this year. I am underway with a new treatment, that will hopefully be the final treatment. Ethan is a very healthy and happy one year old that engages the world more and more each day. He is starting to say a few garbled words, and is beginning to communicate. This last year has been a whirlwind created by the adversity of cancer and the joy of new parenthood. Megan nor I could have ever imagined what these first four years of marriage have brought us, but through it all she is my rock and my love. Our greatest blessing is one another, and no matter what the future years bring, we are stronger now than we ever have been and ready to take on whatever else lies ahead. We have also learned what a wonderful support system we have in all of you out there, and we thank you all for backing us, cheering us on, and carrying us at times as well. We have certainly learned a lot about one another, and a lot about life this past year. In this world, no matter what you face, you cannot make it alone. We are very lucky to have one another, and to have all of you to call family and friends.

Thanks a million!

Saturday, August 1, 2009

Open Letter to My Cancer

You are probably pretty proud of yourself; that you have withstood several rounds of chemo and nine months later you are still hanging on. Well guess what, I am still here too! In fact, I am stronger than I was 9 months ago. You may have felt me shaking you up a bit this morning. That's because I ran 2 miles. That's right, I walked 2 miles and ran 2 miles with my son.

You may want to take a look around, Cancer. What do you see? I'll tell you what you see. You see health. You see strength. You see heart, determination, a will to live, unending drive, and unwavering faith. Beyond that, what you can't see, is an army of my supporters just waiting for you to fall. WE have YOU surrounded, and WE are closing in. It is time to come out with your hands up. It is time to wave your white flag. Otherwise we are coming in with guns blazing. This is your final warning.

You may have survived the last nine months, but you are much smaller. I have not only survived, but I am stronger. We have you surrounded, and we will continue to close in like a boa constrictor until you give up or die. Know this Cancer, when you take your last breath, YOU will hear US roar.