Friday, July 31, 2009

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...