Perhaps the most reassuring words spoken by Dr. Einhorn yesterday were the following: "There isn't a dark cloud hanging over you."
The trip to Indiana was well worth the expense. After an uneventful flight we checked in to the IU campus hotel which was directly across the street from the hospital/medical center where I had my appointment. We got up around 7 and put on our cold weather running gear, and first took a jogging tour of the campus (mostly to see where my appointment would be later that day) and the jogged into downtown. We read all of the historic/tourist signs we found downtown near the state house, then had breakfast at Patachou (home of the best cinnamon toast you'll ever have). After breakfast we did some more jogging/exploring around downtown, running through the historic canal towpath which was really nice, then jogging across the White River twice until we finally reached the hotel again. A pretty good distance, especially on a full stomach, probably in the 4-5 mile range round trip.
I showered and got dressed first (in a suit, of course) and while Julie was getting ready I took all of those medical documents, slides, and CDs I'd collected on Friday and Monday and walked them over to Dr. Einhorn's office. While my appointment wasn't until the early afternoon, I figured I'd drop them off earlier (it was about 11 am at this point) in case they could be reviewed before our appointment.
After that Julie & I met up and tried to make time pass as quickly as possible leading up to the appointment. It's hard not to let your imagination get the best of you as you watch the minutes tick by. "What if he says this?" "What if he says that?" You get the idea.
Last Friday after our meeting with the chemo nurse when we heard what chemo would be like and that Einhorn was interested in meeting with us, I immediately ordered a Kindle Fire tablet from Amazon. I prefer printed books, but at $200 the Kindle offered easy access to books (borrowing through Amazon & my local library) plus a decent tablet computer for the numerous Netflix and other on demand I'll be watching. The iPhone screen is so small comparatively, although it killed me to buy the Kindle when I know there will probably be a newer, bigger version out soon.
Anyway I mention that b/c I had received the Kindle before we left for Indy, and had borrowed several ebooks from the library for the trip. I tried to read to pass the time but my mind wouldn't concentrate. I'm not even sure what I was/am worried about or scared of. Not death (at this point), or of meeting the doctor, or even chemo (again, at this point). The unknown, I suppose, but even that doesn't sound right. But scared I was, sort of an empty scared feeling in the pit of my stomach.
About 30 minutes prior to the appointment we went up to the cancer center and checked in. From there another hour or so wait with other patients and family. Everyone is there for the same reason, someone has cancer. But no one looked like me (or Julie, for that matter). I know how this will sound initially but hear me out. Everyone looked sick, and old, and beat up. Whether the patient or the family, they all looked bad, terminal. Meanwhile Julie and I young(ish), healthy(ish), we're dressed up like we are going someplace special (because to us, we were).
Perhaps most importantly I don't feel sick. Throughout these last three cancer diagnosis(es?) I've never felt sick until I received treatment. Even the initial bump I felt on my testicle that started this whole mess never hurt, it was just a strange, pebble sized thing I could all of the sudden feel one day. Each time I've been diagnosed I've gone to see a doctor feeling 100%, only to have some treatment that knocks me down a bit and makes me feel like crap for a while. Reading back through the posts on this blog you can see my resolve failing a little from diagnosis to diagnosis. I still think I'm in a pretty good place, but this time is certainly harder than the last, and a hell of a lot harder than the time before that.
The doctor was running behind but we had no where to go and that was fine with us, aside from the growing tension I suppose. Julie had brought a notepad and we had written down a few questions to ask, but otherwise we just sat with me pretending to read and Julie looking at trashy celeb magazine.
Finally we got called back and I got the first (and only, really) bit of bad news. They took my vitals then had me take off my shoes and measured my height. 5 feet, 7.5 inches. 5'7.5"??? I begged the nurse to put down 5'8" but I don't think I convinced her.
Vitals all looked good (except for that stupid height) and then we were directed to an exam room and told the doctor would be with us shortly. 10 or 15 minutes in a youngish female doctor came in and said she was a fellow working with Einhorn and would do the initial exam, which would be followed by Einhorn. We went through the timeline of this entire process, starting with my discovering the lump through to our arrival in Indy. Lots of questions about how I reacted to various treatments, which I choose the ones I did, etc. That was followed by an exam of my remaining right testicle (always fun to drop your pants in front of strangers so they can touch your privates), and then we were again waiting for the doctor.
Not too long after the fellow left Dr. Einhorn came in, we did our introductions and then got down to business. He had a lot to tell us, so we basically let him speak without interruption unless he was looking for a response/asking a question. He was as nice, maybe nicer, than we had imagined. A very comforting presence, he might be the best in the world but he didn't rub it in your face. He knew our biggest concern was that there was something really wrong with me, different from other patients, and he did his best to reassure us. That's when he gave us the "no dark cloud" line above, and said that much like flipping a coin the statistics for recurrence were always the same, they don't build on each other from one treatment to the next. Just as you might flip a coin 5 times in a row and get heads, but on the 6th flip your odds are still 50/50. The same was true, he explained, with my cancer. There was a certain percentage chance that it would come back after surgery and that single carboplatin chemo (low, but a chance) and it did. And then the odds started over when cancer returned and I had radiation, low again but a chance it would come back.
I'd taken a circular route to get to the big guns treatment of BEP chemo, but that's where I was now. He all but guaranteed I would be cured by this. He said something like "you may not want to hear this because you might feel jinxed, but this is going to cure you. As a doctor I can never say 100%, but this is a medically close to 100% as you can ever come."
Undeterred we still asked "that's great, but we have to know: what if it does come back? Are there any treatment options left?" He reiterated that this would cure me, but that there would be some other options for treatment (survival chemo, I believe he called it) if it came back.
A lot of this was on Julie, I did pretty good right up until Dr. Einhorn came into the room. Then I had a bit of that deer-in-the-headlights thing going on. I tried to answer his questions but often had to look to Julie for help. I tried to explain to him near the end that I really appreciated him seeing us on short notice, and that it was really an honor to have him consulting on my case. I always hope people can tell when I'm being sincere about that, and I also like to think the love and support Julie and I have for each other comes through. I think it does, and that genuinely nice people feel better about helping you when you don't come off as a dick.
I'm not going a good job of describing just how pleasant and reassuring Dr. Einhorn was. This was a very expensive trip since it was booked just days before, but it was well worth the money. I told Dr. Einhorn we had one more question for him:
"If you were in Indy for just one night, where would you eat?"
"If you like steak," he said "you should to to St. Elmo, and you have to get the shrimp cocktail, it's a real experience."
We had already heard of the place from others so that solidified it. A Tuesday night, in downtown Indy, and the only reservation we could get was for 4:45. Since we'd skipped lunch and now had waves of emotions (and a release of all of that tension) 4:45 was ok with us. It was about 3:30 at this point so we headed downtown, stopped at a bar to try one of the local microbrew beers (Sun King's Osiris Pale Ale) then walked in for our 4:45 reservation.
Einhorn's recommendation didn't disappoint, and he was right the shrimp cocktail was an experience. I'm not sure it was a good one, but an experience none the less. Loaded with horseradish (look I love spicy food, I can practically chew on a piece of horseradish, but this was insane) it was so hot your sinuses and head were just throbbing with each bite. But the steaks and sides were great, and Julie & I were relieved and sometimes teary eyed. We kept commenting how strange it was to be relieved and excited, when I still have 3 months of hell coming up to receive the chemo. But we were relieved and excited.
When we got back to the hotel we packed and almost immediately went to sleep. About 3 hours later all that meat, salt, and wine caught up with me and woke me up for some water, and then I didn't got back to bed until almost 4. After the water had done it's thing, the reality of the upcoming treatment slipped into my mind and wouldn't let go. These next few nights leading up to Monday are probably going to be spent tossing and turning, heading out to the couch so I don't disturb Julie.
A miserably turbulent early morning flight from Indy back to DC, followed by a nap of a few hours with Bica, and I'm feeling ok again. The final follow up drs appointments this week and then 5 days of chemo starts Monday.