The World Renown Johns Hopkins Hospital

Hello family, friends and passing gawkers! We are writing you after our first visit to the World Famous Johns Hopkins Medical Campus. Wow, soak that in for a minute.

As you must know by now we moved to the North East several months ago and had to give up a LOT for me to take a fantastic promotion. The bad part: Joan leaves her friends, the job she loves and an Oncologist with whom she had developed a deeply trusting relationship. But when telling Dr. Capone that we would be leaving Florida for Pennsylvania she hoped out loud that we would be able to get Joan into Johns Hopkins Cancer Center. It is like a Xanadu for cancer doctors or something. After an initial consultation (read the details in the post below) with literally one of the world's most respected experts in treatment and instruction into Joan's specific type of Lymphoma, we were really excited about the trip to JOHNS HOPKINS finally!

I should back up a bit and tell you what we have been doing since we moved into our new house back in March. It has been a terrific move so far! Joan and I have settled in famously into our new environment. Joan found the "Heritage Trails" near by. The trail runs from York to Baltimore, about 60 miles. It is a crushed quartz and granite path that runs immediately next to a train track that was laid in the mid 1800s . Trains can not really deal with much of a grade so the path is nice and flat and is blanketed with soaring old growth trees which provide ample shade and a pleasant distraction. While I struggle pumping my get-away-sticks Joan glides through the pretty old towns we pass through and has even taken to attaching a small trailer on the back of her bike. It is a hilarious contraption we torture our dog with by locking her inside. She is incredibly confused about where we are going and why it takes so long, but Joan and I certainly enjoy riding near the rails that carried Lincoln to his final resting place in Illinois after his untimely death.

We have also enjoyed our side trips to Gettysburg to visit the amazing Battlefield Park and have even taken our bikes there too. On our last trip to the quaint little town with the gruesome past I even met Ken Burns the famous documentarian. I also cried like a six year old girl on the first day of school after peddling up the hills where real men had died in the tens of thousands nearly 150 years earlier.

Just the week before Joan's appointments we went with most of Joan's family to Rocky Mountain National Park and climbed mountains and went on beautiful hikes looking for animals. We literally saw hundreds of Elk, Deer, Moose, Marmets, Prarie Dogs, Ground Hogs and so many, many of God's creatures. It was a great week made possible because only one of us has to work right now!

Living here has been fantastic.

Our first visit to Johns Hopkins was less overwhelming... We arrived the Alan and Joan requisite 45 minutes early and went right to our first stop. But when we got there the sole employee told us that we had to check in on a different floor first and obtain an ID card of a sort. No big deal as no one else was in the waiting room... Yet...

Long story short our thirty minute process to get the required card and get back upstairs put us behind about an hour somehow. We came back

into the same waiting room which had been empty one half hour earlier was now completely packed. We were at the back of the line. We waited for Joan's name to be called and finally she was brought to the back for her CT scan and PET scan.

Joan enjoying a refreshing and also radiologically visible contrast beverage

One fantastic thing about being at the world's most prominent cancer treatment center is that we were going to have her scans done and very shortly afterward have those scans analyzed by Joan's doctor within a couple of hours! This is a huge step forward after waiting for the results for a week in Orlando.



But after getting the scans done she then had blood work done (also to be immediately read by her oncologist) and waited for the doctor to call. That process was hilarious. In a room the size of a small grocery store or PA Driver License office we waited while random doors would fly open and produce a woman carrying a clipboard. This woman would shout a name and look around the room while often at the same time another woman would be doing the same near another door. It seemed incredibly poorly designed and worse still, there were many, many people in this room ahead of us... ugh...



Finally our turn came and after calling our name we were ushered into a tiny waiting room filled with all things Baltimore Ravens Purple (REALLY?). I also noticed that whomever had designed this world famous (though rapidly receding in reputation with ME) suffered from Chronomentrophobia. Seriously, they know that people are waiting FAR beyond their appointed times and it would be easier to find a clock on the wall at a casino than inside a waiting room at Johns Hopkins.



When we finally saw Dr. Swinnen, he spoke first to me and seemed to think that I was the patient rather than Joan. He acted confused for a minute and excused himself as he had left his chart in the next room. Upon returning he spoke only to Joan after clearly being reminded by the chart that JOAN was the one he had an appointment with. The appointment itself was less than exciting but resulted in the great news that Joan still does not need to have chemotherarpy. The scans that she had done just a couple of hours before were analyzed by a radiologist who specializes in cancer. In the report her lymph node sizes had remained pretty stable, but clearly Dr Swinnen did not remember any of her information from before. He acted like everything he told us was the first time we had ever heard it. He was disappointing. The news we got was not. He next appointment is six months away, literally next year. So Joan is still kicking Cancer's @$$!




In the meantime know that Joan and I are still doing great. She is not working for the first time since I met her in 1979! She worked as a Sophmore in High School and has had at least one job since then. But she will take virtually all of 2009 off to get aclimated into our new surroundings, enjoy seeing family and waiting for me to get home so we can hike a bike or hike trail somewhere.




Man, I can't WAIT till she gets a freaking job...

So Many New Things!

MAN! How am I going to deliver this update?

So, last time I updated the site I told you that I got promoted and that we would have to move. Well, since January I moved into an apartment in Pennsylvania, we sold our house in Orlando in just SIX DAYS, Joan (and Trixie and two birds) moved in with a friend's (Love ya Sara!) mom.

Joan's Last Day at T2

The Tables TURN!

THEN on weekdays I

would work and look at houses at night and every other week I would fly down to hang out with Joan in Florida. Ultimately we found and purchased a lovely home in PA (near the city of York) and we are settling in to our new lives among the farmers of Windsor Township. It is bucolic and in every way different than Florida.

But Joan has Cancer and all so we had to adjust also to a new Insurance Company and eventually find a new Doctor and schedule an appointment.

When we first told Joan's original Doctor, Stephanie Capone that we were moving to PA her face fairly lit up and she said almost immediately that her grand

est hope for Joan would be that she could get to go to John's Hopkins Oncology Center in Baltimore.

BALTIMORE?!

I have to assume that everyone reading this blog is familiar with Joan's nearly unhealthy passion for her Cleveland Browns Many of you are already aware of the fact that the city of Baltimore colluded with the Brown’s former owner, the currently dead Art Modell to steal the Browns from Cleveland. Modell wanted the people of Cleveland to buy him a new stadium at their expense even though they were already filling the 86,000 seat stadium every Sunday despite a poor team record in the final years. Watch Mike Ditka wrap up how the fans of the Browns were hosed in 1995.

Or watch it here http://www.youtube.com/watch?v=JFuN3-DbM9w

Of course most of you also know only a few short years after the Browns moved, and became the Baltimore Ravens they won a Super Bowl. All of this happened because the city of Baltimore and the finally dead Art Modell did not care how badly the Cleveland fans got screwed. They only cared about them selves.

Now we are hoping that the good doctors of Baltimore will accept Joan as a patient… Super…

When we moved to PA we knew that there would be many things that we would have to get used to. Joan now has two acres to mow instead of two passes with the mower. She had to relearn everything she knew about plants and planting them. It took us two months to get driver’s licenses and plates for Pennsylvania because of the AMAZINGLY complicated matrix of steps to get them. We also knew that we were close to the evil empires of the Recently fantastic Ravens and the Eternally fantastic Pittsburg Steelers.

Did I mention that my promotion was a really good one?

As you can see there were many adjustments for Joan to make. But clearly the mindset change required in creating a new relationship with a cancer doctor would be tough.

We were blessed to have Joan’s application to John’s Hopkins come back favorably, and we knew it. But there are so many new questions about a new doctor selected to advise treatment options on a disease with no cure. We had seen two other doctors

and they had WILDLY differing opinions. Where would the new guy fall?

Hopefully Joan and her doctor from Baltimore would have a better relationship than the Browns and the Ravens. Or the Browns fans and the Ravens fans for that matter. The Browns have been terrible against their most bitter rival, but the Ravens fans act like they hate Browns fans! After losing tons of games and quite literally our team to them, still Ravens fans are cruddy to Browns fans. Surely Joan’s doctor would not participate in this silly back and forth… We hoped.

The good news was that we got in and also that we were “assigned” to a doctor who is one of the most published specialists for the specific type of Joan’s Lymphoma! What a stroke of Luck! His name is Lode Swinnen, he is from Sweden and he is not only a Doctor of Oncology, but a Professor of Oncology at John’s Hopkins University and JH Continuing Medical Education, meaning he teaches people becoming Doctors and he teaches people who are already doctors! A Teacher and a Doctor and a Doctor Teacher! Sounded like we had scored!

So our first visit was good. It is difficult to report much more than that after only one visit. The doctor literally spent one hour and fifteen minutes just talking to us and looking at Joan’s file and mashing her various danger zones. He made us feel very good about her short term prognosis, but clouded the longer term for us. He was dead on with treatment recommendations with Joan’s first (and best) doctor Dr. Capone. He hates Chemo and does not recommend it until NOT doing it is dangerous. We like that.

So we made an appointment for new scans and an immediate follow up the same day as the scans (awesome new hospital!) for late July. Until then we wait and try and forget that Joan’s body has the potential to turn against her at any moment. Until then she busies herself with tons of yard work and other things around the house, taking side trips with me to places like Gettysburg near by (see below) and counting down the days until Football Season starts.

Joan Makes Cancer Her Bitch Again...

If you missed the title I will spare you the suspense now - Joan had another good appointment at the Oncologist today!

For those of you that do not remember or have not been to this site before, Joan had not been to her cancer doctor for five months, the longest she had ever been between appointments. Since then many things have changed in our lives and both of us were silently afraid that the added stress would show up in her CT scans. Not so, not this time.

Since Joan's last appointment I was chosen for a promotion to Regional Vice President for Cracker Barrel, an absolutely amazing opportunity. Unfortunately that meant that Joan would have to quit the job she loves at Universal Studios and has loved for over 13 years. It also meant that Joan would have to sell the home that she loves and that she spent so much time creating her three time award winning landscaping. And maybe most frightening of all, she would have to find a new Oncologist. One that she loved as much as Dr. Stephanie Capone.

For those of you that do not know Joan well, you may not know that we were High School Sweethearts which, quite frankly, worked largely to my favor because Joan hates change. I just got lucky and met her in the parking lot of the old Band Room at Nordonia High School in the summer of 1979. We actually went back there together this year just after her brother Jack found her old Pom Line Captian's coat (which she will proudly tell you fits just like it did back then.) Sure, but the vinyl on it is so old that it's cracked like a Pennsylvania highway... But on to better topics.

Added stress is of course bad for cancer patients. Of the top five most stressful things that can happen to an Adult American I was forcing Joan into TWO OF THEM - moving and buying a new home. And I was heaping on tons of stress so that I could be rewarded with a big promotion.

We were able to mull over the impact of the job and all of the other changes doing some really fun things like our annual pilgramage to Cleveland for the Apple Butter Festival in Butler, Ohio. Where we were joined by Joan's sister Kathy and Sister Laura and her husband Bill as well as our Hosts Jack and Chris Donnelly. We started the weekend by Joan and Laura and I running in a half marathon where Joan beat me by over one half a mile and Laura had to hold my hand and tell me when to breathe for seven miles. But I finished long before they cleared the track. They got a picture of me running but the ladies were too fast for the photogs I guess.

As we listened to Dr. Capone read the numbers we quickly realized that the news was good. There had been no growth of Joan's cancer in those five months with the exception of one single node which had grown moderately four MM which is less than this letter I appears on most of your screens. Fantastic news. Joan texted the news to her friends at work to which her friend Richie responded - You are making Cancer your Bitch! Funny stuff Rich... Apparently the Stress had not taken much of a toll on Joan's cancer.

Good thing too because there is still a lot to do... We took a break from our many volunteer duties, like raising cash for our church's Free Clinic by dressing up like guests on Fantasy Island and talking people into writing big checks - all in character. Me - a Rocker. Joan - a Brown's fan going to the Super Bowl to see the Browns win it all. (RIP Ricardo Montalban - even you could not face her to tell her that fantasy was totally out of even Mr. Rourke's abilities.)

Anyway, we had to take a break from the fun stuff to go look for a house. Which we did and we are very close to making an offer on a home (after seeing 24 in two days). We also may have set some kind of record for selling homes. We put our home on the market on January 5th in one of the nation's worst performing markets in the country - Orlando, Florida. There were 784 homes on the market the day we put ours in the mix. only 10% of the homes were not Bank Owned, Short Sales or Forclosures. We were told it would take 120 days to sell. It sold in six. In the last seven years Joan and I have sold two homes and they were on the market for a total of nine days before offers were agreed upon.

While looking for places to live we have also peaked into where Joan would go for her follow up appointments. Our Dr. fairly glowed in her assesments of the Oncologists in the Baltimore area just one hour from where we are looking to move. So we are optomisic about that too. It seems that although we have had to deal with many, many obstacles, God has always provided an answer.

So as we get ready to face all the new stuff involved in new homes, new cities and new friends we are encouraged to know that you all continue to pray for us. We speak of you often and as always Joan loves to read the comments that you leave on this web site (they do go right to her email!). And as much as we have been blessed with this last six months or so, as many miracles as we have been witness to, who can even guess what will happen next -

Is a Browns Super Bowl really too much to ask for? We don't think so...