Wednesday, May 30, 2007

One month...

Hi everyone. This is Mark and this will be my first entry on the blog that I wish didn't have to exist. I hope to take on a more active role keeping you up to date with what's going on. First, a BIG thank you for your endless support and prayers. Every message, email, phone call, and card has been extremely helpful. Please know that your love has played a huge role in helping us get through this month, and I am extremely grateful--and humbled.

A special thanks to Ashley too, whose "blogging" has been so eloquent that I've procrastinated taking part as I seriously doubt my entries can match hers.

Today marks one month since the diagnosis. I still vividly remember the physician asking me if I had any family in the waiting room and automatically thinking to myself "that's an odd thing for him to ask--the worst it could be is a detached retina, right?!--common, give it to me." Boy was I wrong! I now know firsthand that life is full of the unexpected at times. (And I should have answered him "no, can I come back later?")

As I look back, the month is mostly a blur and seems to have flashed by at warp speed. However, there are some very distinct days/events that seem forever imprinted in my memory: the day of the diagnosis, the immediate days following where Ash and I spent countless hours in our kitchen on two computers trying to learn all we could about choroidal melanoma, the day Anne took us to the airport to fly to Philadelphia, having dinner with my parents the night before surgery#1, checking into the hospital, days 2-5 in the hospital, and yesterday.

Yesterday was my first trek back to the office. As some of you know, my office and labs were moved into a brand new building this past December. Immediately after moving I experienced a renewed passion about work that I attribute partly to my new space designed especially for my research group.

Due to the regiment of daily drops and ointment and their associated side effects (fatigue, a non-functioning right eye, headaches, etc.), my goal was to ease into my previous life by working half days this week. My first "half day" was strange to say the least. Everything was there exactly how I had left it. Aside from a few extra voice mails and a small stack of junk mail, one could hardly notice that I had been away. In fact, a few people that I bumped into during the day asked how my vacation was--assuming that Ashley and I must have been in Europe or someplace exotic. "I wish!" I kept thinking as I informed them otherwise. But the hardest part was just sitting alone in my office and replaying the distinct days of the month. The things I would normally do and work on just didn't seem important or worth starting up again. So instead I cleaned, and started to throw away things of little value. Fortunately, it was soon 5:00pm--my self-imposed time to go home--otherwise I might have thrown away everything. I hope these feelings soon change and I find my passion again; I miss it.

Well, here's to one not so very fun month. Shoo. Go away. Be gone.

Tuesday, May 22, 2007

Now that's a good lookin' liver!

Hi folks! We received great results today at our morning visit with the doctor. The MRI of Mark's liver showed no evidence of metastasis! Our prayer times have been filled with praises! We'll definitely be sleeping a little more soundly tonight.

Life continues to inch toward normal - our "new normal" - as Mark heals and strengthens. I am hearing things from him these days like "I feel like going on a long run" and "I'm going to go water my grass again." (Don't fret; he knows he's only allowed to do the latter!) To those of you who have spent some time in our home, you'll be happy to know we are even back to our normal routine of reading the newspaper during morning breakfast and tackling the crossword puzzle in the evening!

Saturday, May 19, 2007

Weekend FUN!

Our Saturdays usually involve logging miles on a distance run or tackling a new mountain biking trail....I think this Saturday will be spent fitting Mark for some polycarbonate lens goggles! I know you all love his new Thomas Jefferson Hospital shades, but we wouldn't want them to get damaged on the trail ;-)

We are enjoying having Mark's mom in town to keep Mark company during the day and help out with the chores. Oscar enjoys having her here as well; he gets to take lots of long walks in the neighborhood thanks to Annie!!

On the medical front, Mark had an MRI (liver) yesterday, and we should receive those results in a few days. His eye is looking so much better!! He can see a little bit out of the bottom of it, and he is able to keep it open for more than just a few seconds at a time.

The way you all love and encourage us does not go without prayerful praise and thanksgiving. We are so humbled by your prayers, cards, phone calls, visits, emails, flowers, hot meals, and yummy treats. May we be examples to others of the goodness with which you've showered us.

A month ago...

Would you believe that a month ago today we were at the Grand Canyon ready to celebrate Mark's birthday?! We were unaware of the news we would later receive, but I look back at this weekend - our conversations, our prayers, our actions - and know we were already being humbled and strengthened.


Wednesday, May 16, 2007

An update from Chapel Hill

Hi everyone. We are so happy to be home!!! (We were too tired last night to update the blog with anything other than the fact that we were happy to be home.) Anyway, surgery yesterday went smoothly. I (Ashley) arrived at the hospital a little before 6am, luggage in hand. I helped Mark prep for surgery, and he was taken down around 7:30am. By 9am, he was back in the room (!), a bit drowsy but alert enough to eat some hospital breakfast (haha - that means he was NOT very alert). We begged the nurses to let us stay an extra week, but they sent us on our way to be seen again by Dr. Carol Shields. After a final thumbs up from the doctor, we headed for home.

We arrived in Chapel Hill to TWO moms waiting for us with lots of hugs. Mark's mom is staying with us for a week to help with Mark's care, chores, and Oscar while I enjoy being able to return to work. Mark enjoyed being outside a bit today - taking short walks and watering the grass (and yes, the grass he planted a few weeks ago came in beautifully!) His patch was removed tonight, and he'll be using several eye medicines over the next 3 weeks to help his eye heal.

After a long stay far from home, we have yet to decide who enjoys sleeping in our own bed more, Mark or me...or Oscar! Goodnight!

The BEST Picture!

Waiting for a taxi outside of the Wills Eye Hospital
(Mark likes his new shades!)

Some Pictures

About an hour after surgery



















A few days later....



















Some of Mark's cheerleaders!










Breakfast after the second surgery - yum!



















Time to go HOME!

Tuesday, May 15, 2007

We are HOME!!!!!

Monday, May 14, 2007

Reminders of you

I have been reminded of many of you in unique ways during our visit. You have been with me during my stay whether you knew it or not! My favorite restaurant is Jean's (sounds the same), and I pass Pompeii's and Jay's each time I walk to the hospital. There is an inn called Uncle's, many "well-named" churches (St. Mary's, St. John's, St. Joseph's, St. Anne's....even a Christ Church) and some historic sites offering me a reminder of you (Betsy Ross House, Todd House). I met folks involved with Relay for Life at the 5K. I walked on Cherry Street and Moravian Ave. I asked directions only once (Friday evening); the woman I asked was curious about where I was from. I told her and she smiled, saying she really wants to go to UNC-Chapel Hill.

Thank you, friends. Daily reminders of you have been so encouraging to me.

One more day!

Our lovely stay in PA is coming to a close. This afternoon marked two weeks since Mark's tumor was found, and what a challenging two weeks it has been. We are thrilled to be going home soon. Mark paced the room in excitement during much of my visit tonight. It was so great to see him on two feet! His blood pressure returned to normal (!) late this afternoon; it has not been that way in two weeks.

Tomorrow will be another early morning. I hope to be at the hospital by 6am. We'll go through the same routine as before (pre-op, holding, surgery, post-op), but this time I can't be with him because of the radiation. I plan to pack things up in the hospital room for our trip home while he's in surgery. We'll head back to Wills after surgery for a follow-up appointment there, and then we'll be on our merry way!

The next few months will be filled with more appointments and lots of learning. We also look forward to returning to "normal" with work, weekend bike rides (with goggles now), dinners with friends, and lots of hugs!

Bathroom Humor

Something funny happened during our afternoon visit today. Two men in suits walked into Mark's room with clipboards to "check the bathroom." I should take a picture of Mark's bathroom before we leave. I brought all of our bathroom things from home (towels, soap, bathmat, shampoo, etc) to make Mark's stay a little bit cozier. It's not obnoxious, I promise, but it was one of the tips I liked from Amanda Hill's guide. Let's just say these men don't see a bathroom like this very often!! They were definitely confused by what they saw. I could hear them whispering..."is that a Jefferson towel?"..."That's a different bathmat"..."Hmm, I don't know how it all got here." They would have left Mark's room if we didn't stop them to tell them we brought things from home. Immediately they become concerned that we didn't like the towels Jefferson offered! (Sorry gentlemen, but nothing can compare to the feeling of home!) We politely said we appreciated their concern, but we wanted to bring a little bit of "home" with us to PA. I honestly think this was the first time they'd run into this situation.

I guess I'm glad I didn't bring sheets from home for Mark's hospital bed. I think we would have been the talk of the floor!! ;-)

Sunday, May 13, 2007

Happy Mother's Day!!

I got off to a running start early this morning...literally. I decided to run (yeah, it's been a while) in the Susan G. Komen Philadelphia Race for the Cure. It was the only race in the area that I could find, and I really needed some stress relief after the past two weeks. When I was waiting in the start corral, I saw a news helicopter overhead. I quickly called up Mark on my cell phone and told him to turn on the news. They were highlighting the race, and he could see all of the runners getting ready to start!!! Even though we couldn't be at the race together, it was nice knowing he could catch a glimpse of the event on TV.

(Guess what I found during the race at 21st and Market?? A TRADER JOE'S! I am not kidding. I called Mark (again) right there in the middle of the race. I've also learned that there is a Whole Foods around here. Don't get me wrong, I LOVED the Reading Terminal Market, but if Wills Eye Hospital is going to be our home-away-from-home, I've got to get to know this city.)

In the early afternoon, Suzanne Parker and Steve Miller (Suzanne's fiance) drove from Emmaus, PA to spend some time with Mark and me. Their visit really picked up our spirits (Thanks you two!!). Suz and Steve are getting married in two weeks, and we will be back in Pennsylvania then for their wedding.

So, here's the scoop on our good patient: Mark is still having pain in his eye, and being cooped up all day is obviously physically and emotionally taxing. Thankfully, his appetite is still good, and he said that he walked the length of his room a few times today.

It definitely frustrates me to see Mark hurting and not be able to hold his hand or give him a hug. I can't change his physical environment or give answers to all of his questions either. I'm really happy I can be here in Philadelphia, though. Some visits we just sit, 6 feet away :-), with our eyes closed and find comfort and healing in knowing the other is there. Your calls and emails have been a huge source of comfort to us as well.

I can't sign off before wishing ANNIE and ANNE a HAPPY MOTHER'S DAY!
We love you! We look forward to seeing you later this week.













(And to my Oscar: Thank you for the lovely morning serenade!)

Saturday, May 12, 2007

HALF WAY THROUGH!

Six o'clock this evening marked the half-way point of Mark's hospital stay. We celebrated with pizza and a movie (and tylenol and ice packs, of course!). There's a rain delay at Darlington, so we couldn't share a "Let's go racin' boys!" cheer before I left the hospital tonight.

Mark is doing very well. He is able to open his right eye just a bit now, so it seems the ice packs are working. He was much more mobile when I visited today, and his appetite is great.

I explored a bit of the city early this morning. My dad told me about a place called Reading Terminal Market (http://www.readingterminalmarket.org/), and it's a must-see the next time you're in Philly. It's like a farmers' market: fresh fruits (blueberries for Mark), veggies, meats and breads as well as flowers and handcrafts. Many of the merchants are Amish, and it was common to see the Amish children working alongside their parents.

Mark wanted me to say (again) how much everyone's support means to him during this time. Likewise from me. The emails and blog messages are so encouraging and bring smiles to our faces. Thank you!

Friday, May 11, 2007

Some days you need a hug.

Some days you just need a hug (but you have a radioactive plaque in your eye and have to stay 6 feet away from everyone!)

Hi. It's Friday night. How is Mark? He's doing as well as any marathon-running, lawn-mowing, dog-walking, city-exploring, adventure-seeking 37-year-old guy stuck in a hospital room!! :-) He's tolerating the pain well, and he's been sitting up in bed a bit more. His left eye is tired from doing all the work, but I'm sure it will find strength to catch some Darlington Raceway action this weekend.

Mark's parents headed back to Chicago today, and I have been exploring the city on my way to and from the hospital. I've been looking for local races and found out that the Komen Race for the Cure is here on Sunday - how about that!

Your prayers and kind words continue to encourage us.

Thursday, May 10, 2007

Additional Contact Information

Several of you have asked about how to send things to Mark.

His hospital address is:
Jefferson Hospital for Neuroscience
900 Walnut Street, ROOM 715
Philadelphia, PA 19107

WAY TO GO, MARK!!

Hello everyone. This is Ashley typing now. I am very pleased to let you know that everything went so smoothly today. Our Mark is such a trooper!!

We arrived at the hospital around 6:15 am. We waited a while before being called to the pre-op area, and Mark headed into the operating room around 10:30am. His parents, Annie and Eric, are in town too, and we were all able to be with him through pre-op. While he was in surgery, we tried to make his hospital room a little cozy with pictures, books, etc.

Surgery was quick (~30 minutes), and Mark was wheeled up to his room around noon after some time in post-op. He was in great spirits! He doesn't remember the surgery at all, and his pain was minimal all afternoon. He was very hungry, though, and he ate every bite of his hospital lunch. (Rosa: He is already enjoying your care package treats too!! Thank you!)

He does, of course, have a HUGE patch over his eye (two actually, and the outer patch is made of lead). Several times each day, the nurses remove the patches and place a small bag of ice over his eyelid to help decrease the swelling.

We spoke with the surgical team around 1pm. The lead surgeon, Dr. Carol Shields, said that the tumor was contained, and there were no complications during surgery. They are planning to keep him in the hospital one extra day because they want to make sure the tumor cells are really affected by this radiation. We now plan to return to Chapel Hill on Tuesday evening.

What a trooper!!! I'll continue to keep you posted.

Monday, May 7, 2007

"Our goal is to save your life!"

"Our goal is to save your life!" Now those are the words we like to hear. We were so very pleased with the professionalism, passion, and expertise we encountered today at the Wills Eye Hospital. The visit confirmed that Mark has a tumor in his right eye and it needs to be exterminated. We have decided to go forward with radioactive plaque surgery in Philadelphia THIS WEEK. If all goes as planned, Mark will be in the hospital from 6:30am Thursday (May 10) through early afternoon Monday (May 14). Before the radiactive plaque is implanted/started, they will do a fine needle biopsy of the tumor to collect a few melanoma cells for further testing. This will allow for the determination of how aggressive the melanoma is. We thank you all for your prayers and encouragement.

Sunday, May 6, 2007

Discovery Channel's "Living with Cancer" TONIGHT

Tonight (Sunday, May 6) at 8pm ET, "Living with Cancer" premiers on the Discovery Channel.
http://dsc.discovery.com/convergence/koppel/koppel.html

Heading to Philadelphia!

We're off to Philly for our appointment at the Wills Eye Hospital!



(This picture was taken before the start of our Grand Canyon hike on April 20th - Mark's birthday! It was BEAUTIFUL!!!)

Saturday, May 5, 2007

"You have a tumor in your eye."

Several people have asked what led up to those frightening words on April 30. Here's how our journey began:

Early in 2007, Mark noticed that his right eye muscles were twitching. He had LASIK eye surgery in 2001 but had not had any problems since then. In late March, he scheduled an appointment with his optometrist. Everything appeared normal based on the eye exam, and the twitching was attributed to stress/lack of sleep. A week later, the twitching stopped.

Shortly after, Mark noticed he was having difficulty seeing clearly. Objects up close and far away were just fine, but things in between were cloudy. Toward the end of April, he returned to the same optometrist who did notice that his visual field was off. An appointment was scheduled with a specialist for mid-May.

Those of you who know Mark, say it with us "mid-May?!!?!?! Yeah, right!" So, three days after his second appointment with the optometrist, he was seen by a specialist. They noted a partially detached retina and “cells.” Mark was referred to an ophthalmology clinic.

Three days later (on Monday, April 30) Mark met with two ophthalmologists who specialize in oncology. Independent ultrasounds found a tumor in Mark's right eye - "choroidal melanoma." The tumor measured in at 7.5mm high and 12mm at the base, which classifies it as a medium-to-large sized tumor. He had blood drawn and a chest x-ray done to check for metastasis to the liver and lungs, respectively.

And so our world was a bit shaken. "Why us?" "Why now?" Upon hearing the news at work, I (Ashley) immediately drove to be with Mark. We spent that afternoon and evening comforting each other and contacting our families and church. The pathology results came back late that evening, with no evidence of metastasis in the liver/lungs.

We spent the next several days on the phone and in appointments with many doctors in NC. We are awaiting an all-day appointment on Monday, May 7 at the Wills Eye Hospital in Philadelphia, PA.

What is Choroidal Melanoma?

Choroidal melanoma is a type of eye cancer. It's the most common primary ocular cancer in adults, affecting about 6 in 1 million adults each year. It is malignant, which means it could spread to other parts of the body, typically the liver or lungs. Various methods can be used to treat the eye, and the choice of method is often based on visual acuity in the affected eye, patient age, and the tumor size and location. Two common treatments are plaque brachytherapy (radiation) or enucleation (removal of the affected eye).

Here are some websites that might be helpful:
http://seeacure.blogspot.com (See articles under "Eye Cancer for Beginners")
http://www.jhu.edu/wctb/coms/booklet/book2.htm
http://www.malignantmelanomainfo.com

Welcome to "Eyes on Mark"

Dear Family and Friends,

Into the blogging world we go! Hopefully this website will allow you to keep your "eyes on Mark" and his progress as the months roll by. Warm thanks to all of you who have showered us this past week with your love, prayers, advice, hugs and acts of kindness.

Much love,
Mark and Ashley