Thursday, June 07, 2012

A Little Less Hazy

   There was a haze over the city when I got up early this morning and peeked through the curtains of the hotel room.  I was up just after sunrise because, A) I couldn't sleep and B) I knew I had an important appointment that I had to make sure the family and me were awake and prepared for.
   We had driven up to Pittsburgh, PA from Nashville, TN to visit a doctor that specializes in pseudomyxoma peritonei treatment.  He is one of the top dogs in a dog pen of only 17 or so special dogs in the country.  We had decided to make a small vacation out of it since we were not going to get much in the way of a vacation this year due to me taking so much time off for my surgeries.  And, in pure Jenkins' fashion, we have made a pure adventure of the trip.
   But this morning was a different feeling.  It was really something which I had been waiting for since we found out about all this stuff going on.  I didn't necessarily think that we would have any definitive diagnosis just by traveling up here.  What I did know though, and Kari had agreed, was that we would have spoken to the best doc we could about the situation, and that in and of itself would be worth the trip. In the back of my mind, I knew what Dr. Bartlett (the specialist) was going to say.  But I kept an open mind, and proceeded with my morning with an air of excitement that we could possibly have some answers after our appointment.
   Kari and Wren and I were walking up to the Hillman Cancer Center at UPMC a full 30 minutes before the appointment.  (My Mom had driven up from Virginia, and she took care of River in our hotel room during the appointment.)  When we got there we were greeted at the main entrance, given a welcome packet of information, and given a tour of the patient library.  Then a welcome employee took us upstairs to the office we would be seeing Dr. Bartlett in.  After a few signatures and a set of vitals, we were put in an unassuming exam room.  Only after a minute or so, we were visited by a nurse that I had spoken on the phone with previously.  She just wanted to stop in, check on me and see if we needed anything.  She also said she had sat in on their morning meeting as they went over my case.  Then Dr. Bartlett's P.A., Heather, came in the room and went over our case with us to make sure they had all the details down, and then did an exam.  She stepped out and then after another minute stepped back in with Dr. Bartlett.
   Dr. Bartlett, an unassuming, quiet spoken, middle aged guy, with a friendly but dare I say "doctorish" disposition sat down in the chair in front of me.  He began to explain the process of pseudomyxoma peritonei to us.  I had read much of what he said already in research articles, but later Kari would tell me that what he said was very informative and helped her make some sense of the disease.  He told me that there was truly no way of knowing whether or not I would eventually get pseudomyxoma.  He said that some people get it and that others get lucky and don't.  The only way of knowing was to continue a watch and wait process, by getting MRI scans every 6 months for two years, and then every year, for 10 years.  If, after 10 years, the scans are clear, then I can stop getting scans because even if I did have the disease it would be so slow growing that I would not have to deal with it in my lifetime.  If, sometime in that 10 years the disease shows up on a scan, then they would go in, do a cytoreductive surgery along with a Heated Introperitoneal Chemotherapy treatment, and hopefully that should be enough to take care of the disease.  Pretty straight forward.  He also wrote a prescription for tumor marker tests along with the MRI scans to check for any change in that field.
   I knew, through all of my research, that this was what he was going to say.  And for the first hour or so, I was sort of in a funk, only because secretly I had hoped that we were going to get a much clearer answer that would break through this wall of unknown that we were bumping into the last few months.  But after some thought and talking it through with Kari, I knew that the advice from Dr. Bartlett was just what the doctor ordered.  It was a definitive, confident answer to the direction we should go from here.  It wasn't a "well, I think this should be fine", or a "I don't normally do this, but since you are asking I'll order these scans for you" type of answer.  It was a "we want you to do this" and that was it.
   We are still swimming the sea of the unknown with this stuff.  But I tell you, after today, the shoreline is a little less far off.  The haze has begun to burn off and we are pointed in the right direction confidently for a change.

   Tomorrow we are leaving Pittsburgh and headed back to Nashville.  It will feel good to get back into the swing of things and have a direction, a set plan, a plotted course.  And while us Jenkins' are never free  from change and life's craziness, it will feel more like an adventure again, instead of a ship lost without a sail.

Kari insisted upon taking a photo of me with the Doc and the P.A. because they were part of our vacation.

“Only those are fit to live who do not fear to die; and none are fit to die who have shrunk from the joy of life and the duty of life. Both life and death are parts of the same Great Adventure.”  Theodore Roosevelt


Todd said...

Sending lots of positive energy your way, Jenkins crew.

Todd Lewis

Martha T. said...

Glad you made the trip and talked to a top dog! Love your outlook on the future, as well as the Teddy Roosevelt quote!!

Beth said...
This comment has been removed by the author.
Beth said...

Ryan and Kari, I am soooooo glad to know that you have a clear plan going forward. And I want to thank you for sharing your beautiful story so openly and honestly. The love of your family, especially during this part of your journey, is truly inspiring. Sending love to each of you ... lots of healing love and light!!