Thursday, May 10, 2012

You Have to be This Tall to Ride

The last few months have been an emotional roller coaster. Up and down, up and down. I guess I shouldn't have had all that cotton candy before getting on. Now I'm a little queezy. Here is an update from the last few weeks;
Relief: After our appointment with the rare cancer doc at Vanderbilt, we felt a sense of relief. It was so good to speak with someone in person who spoke the language of this cancer. Up until that point, the doctors we had met with in person didn't know much about PMP, and what they did know, if anything, was old information that was not up to date with the latest knowledge on the disease.
Sinking Feeling: In that meeting, when the oncologist shook my hand and said "looks like we're going to be best friends for the rest of your life", I couldn't help but to give an audible "ugh...".
Confusion: I cannot express to you the amount of confusion I have felt throughout this whole process. Sometime after my meeting with the rare cancer doc here in town, I got a call from the specialist in Pittsburgh asking me to get a CT scan as soon as possible and send it to them. They already had my pathology slides, but wouldn't give me any information regarding what they found or did not find. Was this routine? Did they find something in my path slides? Why the push to get a CT right now?
Anger: A few days later I was able to get in and see my family doctor. He would have to schedule the CT scan for me so that insurance would approve it. As I sat there and described to him the events of the last few months he feverishly typed it all into his laptop. Then, upon finishing, and taking a few minutes to look up some information, he leaned back in his chair and said "sh*t, that surgeon really screwed up didn't he?!" After his decidedly caustic comment he went ahead and scheduled a CT scan.
At the CT scan later that same day, the radiologist working with me was discussing the entire ordeal with me. When I told her what had happened to start this cascade of events, she asked who the haphazard surgeon was. It just so happened that she worked with the negligent surgeon for most of her career as a nurse at the hospital. When she heard his name, she gave me a look as if to say "it's not surprising this happened." She asked if he was going to pay for all of the tests and possible treatment. I told her we were still trying to figure things out. These were her words; "well, I'm not a litigious person, but if it were me, I'd sue his pants off."
Needless to say I have felt some array of the feelings associated with anger recently.
Joy: The day after my CT scan, I had a follow up appointment with the surgeon who finished my hemicolectomy. I was quite giddy before the meeting because I knew I would be cleared to lift and eat normal and return to a more regular state of being. Sure enough he did, and I was slightly celebratory in the exam room.
Fear: Then, after announcing my transfer to a state of eating and working Pre-surgery, he pulled up my CT scan from the day before. He quietly scrolled through it, and then hovered over a section. He pointed at it and said "this is what the specialists will be looking at." The floor dropped out from under me. He showed me a spot of medium gray material in a sea of gray. He said that the spot is what mucin looks like on a CT scan, but that it could also just be inflammation.
Kari and I left the appointment in some sort of shock. Left hanging, wondering whether that light gray blob was the mucus we do not want, or simply inflammation. My gut (no pun intended) tells me that it is simply inflammation. That afternoon I mailed my scans to the specialist in Pittsburgh. Later that evening, I received an email from the specialist asking me to make an appointment to come in to their office to meet with them.
Anticipation: Yesterday I called and made an appointment with Dr David Bartlett at UPMC in the Hillman Cancer Center in Pittsburgh. Kari, the boys, and I will be traveling up there. We have decided to turn it into a little road trip, and have some fun with it. I am guessing and hoping that the visit will simply be a consult. A "you are now my patient and I can now officially review your records" type of visit. It will cost some money to make the trip, but Kari and I decided that even if it turns out to be a 10 minute, shake hands, and get your insurance information, visit, it will be worth it to know that one of the top doctors in this type of cancer is on our side and screening my records for any sign of this nasty stuff.
The loop de loop: On any good roller coaster, there is a big final loop to throw your stomach in knots and empty your pockets of any loose change you might have after spending your family fortune on a hot dog and soda from the snack bar.
This experience has been no different. Kari and I sat on the couch after the boys were asleep and talked. I tried to describe all the emotions I was feeling. Emotions towards a negligent doctor who has changed the course of my health. Emotions towards a set of doctors who blew off my risk because they are only partially educated about the full extent of this disease. Emotions towards doctors who have been helpful and knowledgable about PMP and who have and continue to help me out. Feelings of judgement for being worried about a cancer that I am only at risk for and have not been truly diagnosed with yet. For people telling me to stop researching because it wasn't helping anything. For myself, for wondering if I am overreacting or worried over nothing. I could go on and on. Up and down, up and down.
I keep getting on the computer and looking at my latest CT scan. I have only the slightest idea what I am looking at. It only works to perpetuate the roller coaster. Putting both of my boys to sleep tonight. Giving River a hug and hearing him say "I love you Daddy" in his three year old voice. Getting ready to lay Wren down and seeing him give a big smile through his sleepy eyes as I place him in the crib. All of it goes into the experience of the ride.
Here's the thing about roller coasters though, and is a key point to take away from this post. The ride up to the top is always longer than the ride down to the bottom. It is slower, and gives you a time to catch your breath, check out the scenery. The ride down is always quick. It can be exhilarating, or it can make you want to scream and puke. It all depends on if you fear the drop or not. And when the ride is all over, and the train of little fiberglass carts with shoddy safety mechanisms pulls into the main station, you have ended up somewhere in the middle. Somewhere between the highs and lows. A place that lets you know you could do it all over again, but this time you would try to enjoy it more instead of locking your eyes shut and hoping you don't lose your 7 dollar hot dog...

1 comment:

Martha T. said...

Thanks for the update! And remember, people will give you all kinds of advice (solicited and not), but you do what you feel you need to do in this situation. Continuing to send good thoughts your way!!