Welcome to "Eyes on Mark"

January 2009

2010-01-08T05:26:00.002-05:00

Surgery for the radiation-induced cataract went well last month, with a slight improvement in vision -- thumbs up!!

Quick update

2008-11-15T20:04:00.001-05:00

Still on Avastin and the tumor's still shrinking...
We welcomed a baby girl this fall; this year's been a nice contrast to last!

Kale-licious!

2008-08-22T19:58:00.003-05:00

After some stinky attempts at steaming and sauteeing this wonder-food, I finally found a kale recipe worth sharing. The result: a serious treat!

"Kale chips"
Wash kale leaves and pat dry. Tear into pieces (1 stem might get 5 pieces or so) and place all pieces in a bowl. Add 1 Tablespoon red wine vinegar and 1 Tablespoon olive oil. Use hands to mix the leaves in the bowl. You can add additional seasoning here, but I did not.
Place the leaves on a lightly greased cookie sheet. Bake at 350 degrees for 20-25 minutes. Make sure the chips don't burn! When you pull them out of the oven, sprinkle with salt and enjoy!

Kale contains isothiocyanates that may suppress tumor growth and block the path of cancer-causing agents to their target. Plus it's filled with calcium that is easy for the body to absorb.

Hello again!

2008-07-14T17:20:00.003-05:00

It's been a while since we've written!! Mark is now on Avastin. In a nutshell, it should prevent (abnormal) blood vessel growth and slow down vision loss. Injections and evals are every 6 weeks as opposed to every few months with kenalog. We'll try several rounds of it before deciding whether to switch back to kenalog. After a year+, the tumor is still shrinking...much more slowly now of course, but shrinking still!!

Vitamin D

2008-04-19T06:10:00.001-05:00

Ever visited the dermatologist the day after a weekend of biking on the coast in beautiful sunny weather (after being cooped up through the winter)? You might get a conversation about vitamin D, and that’s not such a bad thing. Vitamin D promotes calcium absorption, maintains immune function and reduces inflammation. We know that sun exposure promotes vitamin D synthesis; however, one must be cautious to limit time under the warm rays. If you’re at the dermatologist regularly to check for melanoma, you will be told that a weekend cycling adventure under beautiful NC skies is not the doc’s idea of prudence.

But if I’m limiting my sun exposure, how to I make sure I’m getting enough vitamin D? Unfortunately, food labels probably won’t list vitamin D content unless they’ve been fortified with it (e.g., milk, OJ), and there are not many foods that naturally contain vitamin D. If you want to go au naturel, you’re best bet is a tablespoon of cod liver oil, which comes in with a whopping 1300+ IUs per serving. Yum. Salmon, mackerel and tuna are good choices too. Our multivitamins have 400 IUs, and the doctor recommended 1000 IUs per day.

Recent visit to PA

2008-03-31T18:37:00.002-05:00

We were in PA two weeks back for visits with Drs. Shields and Sato. Dr. Shields was very pleased with how the eye is healing. The tumor continues to shrink, though much more slowly now. Since most of our treatment decisions now are based on preserving vision, we were encouraged to have Shields' recommend continuing with our plan at Duke (instead of kenalog, we'll try avastin).

This day of appts was the most smooth yet -- surely due in part to efficiency in the drs offices, but we're also getting used to them! Hard to believe our one year CM diagnosis anniversary is just around the corner!!

For the OM folks out there, there are a lot of clinical trials going on right now in the field of choroidal melanoma. Dr. Sato mentioned protein tyrosine kinase inhibitor therapy showing some promise. There is a study in particular called "Sunitinib, Tamoxifen, and Cisplatin in Treating Patients With High-Risk Ocular Melanoma." (Disomy 3 may be an exclusion criteria). This study is for patients who have received treatment for OM but who are mets-free.

Follow-up at Duke

2008-03-02T18:53:00.003-05:00

Hi,

We recently had follow-up appts at Duke and UNC. The great news is that the X-rays and bloodwork were clean! The tumor is still shrinking (slowly), and the right eye got another dose of kenalog to help with the swelling of the retina.

Since Dr. Jared Gollob left Duke back in the fall, we have learned that Duke hired a new oncologist - Dr. Amy Abernathy. She was trained at Duke and then did research in Australia before coming back to Durham. Any CM patients familiar with her?

Off to PA in a few weeks to see Drs. Shields and Sato.

Video of Dr. Shields

2008-02-12T11:32:00.000-05:00

Here is a video of Dr. Carol Shields discussing the diagnosis of ocular melanomas. She is the doctor we see when we make our visits to Wills Eye Hospital in Philadelphia.

The blog has been quiet for a while, and that's how we like it :-) We visit with doctors at Duke next week and will be back in PA in March. We'll be sure to update then!

Bring on a NEW YEAR!

2007-12-20T20:52:00.001-05:00

Merry Christmas and Happy New Year! We are excited to spend a little time in the Windy (err, Snowy) City - visiting with family, shopping at the Kristkindlmarkt, walking the city streets, and enjoying being together.

We had a follow-up visit this week with our ophthalmologist at Duke. The pictures of the eye showed that there is no fluid behind the retina and no more blood around the tumor! The eye looked good and well-healed. Even though the vision in the right eye is improving, the OCT did show some swelling in the center of the retina. With a goal of trying to preserve the vision for as long as possible, we discussed several approaches with the doctor to help reduce the swelling. We decided on a dose of kenalog, a long-acting steriod. We'll go back in a few months, see how well it worked and plan from there.

Blessings to all this Christmastime,
Mark & Ashley

2007-12-10T21:04:00.000-05:00

Mark had an MRI in November and his liver looks GREAT! Thankfulness. We'll be over at Duke for a follow-up appointment before the holidays. Then you know we are ready to ring in a NEW year!!

Updates!!

2007-10-23T19:55:00.000-05:00

Hi, sorry we have been slow with the blogging. There must be some blog-term for that!

To clear up the last blog, "disomy (chromosome) 3" is good; that means there are two copies of this chromosome, which is normal.

We did meet with an oncologist (Dr. Sato) in Philadelphia during our most recent visit, and he recommended continued surveillance. For now, that means follow-up visits, blood tests and liver scans every six months, as well as annual dermatology visits.

So, life is good! We're both traveling a lot, recently celebrated our two-year anniversary, and are looking forward to the holidays.

Thanks for following! Cheers!
Your turtle-bloggers,
Mark and Ash

Some great news!

2007-09-18T08:27:00.000-05:00

Hi everyone. Thanks so much for your phone calls and emails over the past few days. Sorry we haven't been able to touch base with everyone, but your support is much appreciated.

We had a 6:30am appointment in Philly this morning. The genetic test results for chromosome 3 were normal (diploidy)! This indicates a better prognosis. Dr. Shields took time to answer all of our questions and again stressed the importance of keeping a strong immune system, staying active and eating well.

As far as the right eye goes, the scar looked good. A little fluid was still seen behind the retina--although a lot less than two months ago. The fluid is likely causing the flashes, micropsia and edema. We got the okay to ease off of the eye drops though.

So, it's been a great morning. We are thankful and feel like some anxiety has been lifted. Tomorrow we meet with the oncologist (Dr. Sato) for the first time (also in Philly).

Thanks again for all your support!

PET scan-tastic!

2007-09-08T21:20:00.000-05:00

Mark's PET scan last week was, as radiologists like to report, "unremarkable." To us that means "FANTASTIC!" No evidence that the cancer has spread. He's also getting more vision back -- We are eager for him to be off the drops, especially the dilating drop, for him to really gain use of his eye again.

We are getting our questions ready for our 4-month follow-up trip to Philly in about a week!! This is a two-day visit with several appointments. It's also when we will learn the pathology results. We still haven't received these in the mail, although we might before the trip. Results aside, I hope we come away with clarity about the decisions we will continue to make along this journey. Even routine surveillance is filled with issues like "what test(s)?" and "how often?"

We saw a documentary on TLC recently called 'Crazy, Sexy, Cancer.' It was filmed over four years by a 31 yr old filmmaker named Kris Carr who had been diagnosed with a rare cancer. I don't think it is set to air again, but she does have a website http://www.crazysexycancer.com/ and there is a link to the trailer. The show was featured in the news too. We definitely related to a lot of the feelings she expressed about being a young adult with cancer. I love how she signs her blog..."Peace, veggies, and lots of love." :-)

Relay for Life

2007-08-15T21:10:00.000-05:00

Here are some pictures from Relay for Life in California in July. Thank you, Jill and family.

Oh my!

2007-08-14T20:29:00.001-05:00

We took a vacation to Alaska recently.

Take a look at who decided to say hello!!!

Update - Duke Eye Center visit

2007-08-14T20:07:00.000-05:00

Hello all,

Thanks so much for your cards, prayers, books, phone calls, and visits!

We spent much of this morning at the Duke Eye Center. As you can imagine, it's a little more convenient to have a team of doctors close by, and we hope to have the PA and NC doctors share in Mark's treatment.

The first few hours of the visit were much like our trips to PA: visual acuity tests, photos of the inside of Mark's eye, and an ultrasound. Then we really got to sit and talk with our newest doctor, Dr. Prithvi Mruthyunjaya. He was pleased with how Mark's eye is healing. The tumor has regressed more since our July visit to PA (4.3mm to 4.0mm). The most wonderful pictures I saw were of Mark's retina; the fluid really seems to be dissipating nicely (He's been sleeping at a ~45 degree angle at night to encourage this). We spent a bit of time talking about stats and clinical trials, and as always, we have a little more reading to keep us busy until our Sept visit to PA. Anyway, we were really happy to finally meet Dr. Mruthyunjaya and have him as part of our team!!

Yes, we still cheer for the TarHeels.

Two-month follow-up

2007-07-18T20:28:00.000-05:00

Hi folks,

We had our two-month follow-up visit in Philadelphia yesterday. It was a long day. We had email access throughout the day, and it was encouraging to get well-wishes in between tests! Thank you!!

After several tests, we met with our doctor, Dr. Carol Shields. She let us know first that Mark’s left eye looks good and that it should remain unaffected by treatment. Then it was time to talk about the special eye.

The vision out of Mark's right eye remains poor. Optical coherence tomography (OCT) (performed earlier that day) showed that his retina has detached even more as a result of the fluid released by the tumor after treatment. In most cases, the fluid is absorbed by the walls of the eye; this is not the case for Mark, perhaps due to the large size of the tumor or his body not being able to keep up with the amount of fluid. We will wait it out and if/when the fluid decreases, his vision should improve.

They also did an ultrasound on his eye and took pictures of the inside of it. In two months, the tumor has shrunk from 9.0 to 4.3 mm in apical height. While it is good that the radiation worked, having the tumor regress so quickly may not be that good as rapid regression after radiation plaque therapy has been associated with more aggressive melanomas. However, the biopsy results were still pending--they will offer a more concrete answer to the nature of the melanoma.

If any cancer cells are circulating in his body, the doctor said a strong immune system is the best remedy at this stage. She encouraged us to keep eating our veggies! The fact that Mark is “young” and not a “couch-potato” are key right now. On our walk tonight, Mark noted how strong and healthy he feels. He’s been working with a trainer for several weeks now, and it’s amazing what he’s learned to really step-up his workout routine.

We have a lot of recommended reading to do before our visit in September, and this is something for which we are thankful. As rare as CM is, it can be very difficult to comb through and keep up with the literature, the key players, and the latest developments and therapies. We were given references to several studies relevant to where we are now with Mark’s CM as well as information on some of the latest immunotherapy drugs and clinical trials. We will be able to go back in September feeling a bit more informed. We were also encouraged to expand our team of specialists in PA and NC, and we began doing that today.

We thank you for being part of our support team too!!!

Eye cancer in the news

2007-07-18T19:22:00.000-05:00

Here is an article about Kyle Lograsso who was recently featured on HBO's 'Real Sports with Bryant Gumbel:' http://www.phillyburbs.com/pb-dyn/news/113-06052007-1357808.html .

Also, we hear that eye cancer will be a topic of discussion on the CBS Evening News with Katie Couric this Friday (7/20) at 6:30pm.

Lace 'em up!

2007-07-10T20:15:00.000-05:00

When we were in the first few weeks post-diagnosis, a doctor told me what we were experiencing was a 'trauma' and we may notice episodes of forgetfulness. We are about 2 months post-surgery, and although I took pages and pages of notes at every appointment and during every phone call, that's still one week I remember all so clearly!! Thankfully so, as it is nice to look back and see how far Mark has progressed in his healing process. His eye is still a bit swollen, and he's still using dilating and steroid drops. We had a cloudy, stormy day in Chapel Hill today, and that was a real treat for him! (It's tough for him to be out when it's so bright.)

The past few weeks have been exciting because we've started running again! We would usually ask about running at each doctor's appointment (When is it ok to start running again? Will it hurt the eye?), and we learned quickly that this was not a common question choroidal melanoma patients usually asked! So, the running shoes sat in the closet until about two weeks ago when Mark woke me early one morning and said "Ash, get your running shoes. Let's head outside for a run." WHOO-HOO! I'll admit, I was winded by the end of it, but it felt good! For those who don't know us well, running is such a part of us as a couple - how we got to know each other, how we plan mini-vacations, how we meet up with family and friends - and it just feels good to have that part of us back.

We recently had several friends in town from across the country (our first overnight houseguests since Mark's mom was here the week after surgery), and as much as I'm sure Mark loves his eyedrops and occasional Tylenol, friends are truly great medicine!! We had a ball!

This time next week, we will be in Philly for the 2-month follow-up visit. We'll keep you updated!

Cheers!

2007-06-24T19:27:00.001-05:00

How about a nice glass of carrot-beetroot-apple juice? :-)

Slooooooow healing

2007-06-24T17:17:00.000-05:00

Hey everyone,
Time for a new update. Although many of the days in my week appear to go by slowly---the weeks seem to be flying by. Not sure how or why that is.

My eye seems to be healing ever-so-slowly...or...I'm getting used to the condition it is stuck in. I think it is the former though. Although I can't read with it, I am able to see things when there's plenty of light, albeit what I do see is at a darker level than with my good eye. In the dark, everything is pretty much dark. I still have quite a severe case of double vision when I try to use both eyes at the same time (so I don't---I have a permanent wink going), but the physicians attribute this to the fluid being released from the tumor. After the eye "drains" this fluid, the double vision should go away. Doing anything in the direct sunlight remains a challenge. I am still doing daily dilating and steriod drops. Thus far the steroids are not helping my physique.

Here's to the start of another new week---bring it on!

No more headaches, but...

2007-06-13T15:49:00.000-05:00

Hi Everyone...it's been a while since we provided an update. Things here have been going ok. The headaches that Ashley reported on in her last post slowly subsided although I was still having some pain in and around the eye. I visited the UNC opthamolgist again yesterday and he prescribed a steroid and suggested another three weeks of drops (steroid and dilating). You may recall that I had stopped this regiment on Wed. June 6. He also suggested I visit Dr. Shields in Philadelphia again in the next 3-4 weeks. Apparently he observed more inflammation than normal although "everyone heals differently." That's something I hear and read a lot these days. So...last night after visiting the pharmacist, we started drops again. As expected, my eyes were very sensitive to daylight again today. Let me tell you, when the sun is shining, it is a real bear to be outside. Even though we are adding drops to only one of my eyes, the other eye seems connected to the treatment.

On a positive note, I have been able to make it to the gym again--and the exercise feels really good! This past weekend I even jogged a couple laps around the indoor track (not a big feat---18 laps around equals a mile), and walked several more. Perhaps the exercise will boost the healing process!

We're still doing great with our health food diet as well. It's really just lots of fruits and vegetables, flax seed, and lean meat, and avoiding foods with processed sugar. After recording everything that we ate for almost a week, I met with a nutritionist and she said that Ashley and I should be her poster-children for healthy eating. That made us laugh.

I have also been productive at work again!! Despite only working half days still, "we" were able to submit a grant to the NIH for continued funding of my group's research on glucose biosensors. Of course, this would not have happened without the assistance of a couple of my hard working graduate students and a very knowledgeable grants specialist (Laura) who is also my administrative support person.

So although I'm still dealing with this thing called 'CM' and it's ramifications, life is slowly moving forward. Peace.

Tuesday evening

2007-06-05T21:16:00.000-05:00

It’s a quiet evening at home tonight. This is Ashley, and Mark asked that I update you all on the latest with his special eye and life around here. It’s been one physically painful week and a half for Mark, that’s for sure. After learning that most people recover a little more quickly after surgery, Mark visited an eye specialist at UNC Hospitals yesterday who looked at his eye and compared it to the pictures before radiation therapy. We learned there is quite a bit of fluid around the tumor. To back-track a bit, this subretinal fluid is a common problem for people with choroidal melanoma, often causing detachment of the retina. I could see the fluid around the tumor in the ultrasound pictures taken during our initial visit with Dr. Shields in early May. Normally what happens is the fluid resorbs after the plaque radiation treatment. In Mark’s eye, the amount of fluid seems to have increased. Thinking Mark could be allergic to one of the medicines he’s using, the doctor prescribed an alternative for us to try.

A doctor from Dr. Shields’ office called this morning and noted that sometimes the amount of fluid around the tumor increases after radiation, and it would definitely be causing the migraines Mark is having. He will be seen at UNC again early next week. Aside from the headaches associated with the increased fluid, its persistence can lead to decreased vision. There are treatment options, but we’re praying it just mops itself up!!

We’ve also been busy the past two weeks researching what cancer cells like to eat and what foods keep them at bay. We plan to stay away from the former and gobble up the latter. Sounds simple enough, right? Honestly, there is so much information out there, and we are trying to digest (!) it all. It's definitely been interesting to learn more about what foods can help Mark’s body fight and heal. The first item we introduced to our diet was flaxseed. The American Society for Clinical Oncology recently held its annual meeting…Alternative therapies were acutally discussed, including the benefits of flaxseed! Some of our other “changes” hardly count as changes. I think we are just more aware of what we buy and where it's from. We love taking advantage of all of the farmers’ markets around town, and you may see us in the aisles at Whole Foods every now and then. My brother maintains a garden for patients at a hospital in Senegal as part of his service with the Peace Corps. He’s got a green thumb, that’s for sure! When he comes to visit next month, we’re going to see about starting our own little garden :-)

Oh, by the way, Oscar has enjoyed eating healthy too. His two new favorite “treats” are broccoli and celery!

Next up---JUNE!

2007-06-01T07:41:00.000-05:00

June June June! I have a feeling this will be a better month than May so please share my excitement. Woohooo!!!

First off, a Happy Birthday to my brother David who was born today (June 1). He is a high school chemistry teacher in Illinois and apparently each of his classes will be helping him celebrate! Dave--wish we could join you but please know we are celebrating with you in spirit and thinking of you.

I had a slight set back yesterday--my first migraine ever--right behind my special eye. And let me tell you I will remember the pain for months to come. I was very worried until the physician that I called at Wills Eye Hospital told me others have experienced similar pains during recovery and not to worry. He advised me to take two Tylenol and call him in the morning if it got any worse. Well...it's gone! Whew...{relief}. Nowadays, any change from what I perceive to be "equilibrium" gets me worrying--but I suspect that is normal and may lessen with time.

Despite not feeling so great, the day/month did end with a bang. Thanks to Dom and Sarah, we had an excellent homemade dinner last night that we didn't have to prepare! It was so nice not to have to think "hmmm...what should we make for dinner and will it require a trip to the grocery store..." Thanks Dom and Sarah.

Uncle Skip and Aunt Betty also sent us a wonderful breakfast package which included Aunt Betty's extremely tasty homemade granola. Thank you so much!! And Betty--you need to sell/market that granola.

Wishing everyone a happy and healthy June! Much love,
Mark

One month...

2007-05-30T08:31:00.001-05:00

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.

Now that's a good lookin' liver!

2007-05-22T20:50:00.000-05:00

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!

Weekend FUN!

2007-05-19T08:39:00.000-05:00

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...

2007-05-19T08:11:00.001-05:00

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.

An update from Chapel Hill

2007-05-16T19:52:00.000-05:00

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!

2007-05-16T19:47:00.000-05:00

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

Some Pictures

2007-05-16T19:39:00.000-05:00

About an hour after surgery

A few days later....

Some of Mark's cheerleaders!

Breakfast after the second surgery - yum!

Time to go HOME!

2007-05-15T19:56:00.001-05:00

We are HOME!!!!!

Reminders of you

2007-05-14T21:12:00.000-05:00

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!

2007-05-14T20:23:00.000-05:00

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

2007-05-14T19:34:00.000-05:00

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!! ;-)

Happy Mother's Day!!

2007-05-13T19:33:00.000-05:00

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!)

HALF WAY THROUGH!

2007-05-12T19:12:00.000-05:00

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!

Some days you need a hug.

2007-05-11T20:30:00.000-05:00

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.

Additional Contact Information

2007-05-10T16:02:00.000-05:00

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!!

2007-05-10T15:35:00.000-05:00

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.

Contact Information

2007-05-08T13:02:00.000-05:00

While Mark is receiving his radioactive plaque treatment, he is allowed to get out of bed and move about, but he has to stay in his hospital room. Each visitor is allowed to be in his room for a maximum of 3 hours per day.

Please help keep Mark company during his stay:

Cell Phone (Mark):
(919) 260-7451

Hospital Phone (Contact a Patient/Patient Information Phone):
215-955-6460 (7 a.m. to 10 p.m.)

Email:
mhs1970@yahoo.com
* Mark will not have internet service in his room, but Ashley will manage his account and bring him messages when she visits. You may also contact Ashley at ashley_schoenfisch@yahoo.com (that's an "underscore" in the address: ashley_schoenfisch).

Hospital Address:
Jefferson Hospital for Neuroscience
900 Walnut Street
Philadelphia, PA 19107

"Our goal is to save your life!"

2007-05-07T17:36:00.000-05:00

"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.

Discovery Channel's "Living with Cancer" TONIGHT

2007-05-06T11:31:00.000-05:00

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!

2007-05-06T11:07:00.000-05:00

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!!!)

"You have a tumor in your eye."

2007-05-05T17:48:00.000-05:00

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?

2007-05-05T17:28:00.000-05:00

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"

2007-05-05T17:22:00.000-05:00

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