Serendipity

Serendipity means a "happy accident" or "pleasant surprise"; specifically, the accident of finding something good or useful while not specifically searching for it. The word has been voted one of the ten English words hardest to translate in June 2004 by a British translation company.[1] However, due to its sociological use, the word has been exported into many other languages.[2] Julius H. Comroe once described serendipity as : to look for a needle in a haystack and get out of it with the farmer's daughter.[3]

So as the readers should know I've tried really hard to plan things out; stay a few steps ahead of the action taking place; get all the information up front so I can manage my care plan (since it was made clear there wasn't really one person in charge ...). On our first visit to St. Louis, we spoke with the surgeon, the medical oncologist, a plastics specialist, and the radiation oncologist. When we spoke with the radiation folks I asked them about the difference between the newer more focused (shorter duration) radiation treatment and the more common 6-8 week course of radiation. We discussed the development of the new technology, what made people candidates for one or the other, etc. Although the oncologist couldn't say for sure until later, he said based on what they knew at the time (small tumor, etc) I could be a candidate for the shorter course.

After this trip but before surgery I spoke with all of the offices again and asked a range of follow up questions -- including how long do you have to wait after surgery to do chemo (or radiation if we didn't do chemo)? And how long after chemo can you start radiation? I had been told ( I thought) that you had to do radiation AFTER chemo if you were going to do chemo.

Since we hadn't figured out the chemo part of it... After surgery I was focused on working on the chemo question; and figured radiation was on hold until that question was resolved.

So because of the kerfluffle caused by Jackie... I wound up with an appointment schedule this trip to see Dr. Naughton (medical oncologist) without really having a reason to see him. His nurse Paula and I discussed skipping it... But then she and I were both "eh, you're gonna be there anyway..."

So this is what I found out at my visit with Dr. Naughton:

1. He was pleasantly surprised to see I was not gene positive ( he totally thought based on my initial biopsy that I would be).

2. He was happy to see that the tumor was smaller than originally thought (apparently those millimeters really matter!), and that the lymph nodes were clear.

3. He was pleasantly surprised to note that they downgraded the grade number from 3 to 2. I made sure he knew it cuz I was sure this would be a significant deal.

4. He did say, when asked by me, that all of these things DID change his position of recommending chemo at this point; but it would now hinge on the oncotype results.

5. Oncotype results are given in a number not a yes or no. If it comes back as low single digits chemo is off the table!!!!! If it comes back as doUble digits - chemo is recommended. If its high single digits, we'll have to make a decision.

6. He wants to make sure he treats me to give me the greatest chance of cancer free life but does not want to provide treatment that is unnecessary or overkill.

7. On Thursday next week we would know the results and he would call me (usually they require an in person meeting but he was ok doing it on the phone due to where I lived).

At some point he asked about radiation and I mentioned that Dr. Zobari thought I might be a candidate for the short course. At that point he became a bit concerned and let me know there was a window to do the short course and it was done usually prior to chemo?!?! What? Huh?

He said he would call him, and that if Dr. Z wanted to move forward -- to go with it -- and if they did chemo then it would be after. So effing confusing...

We checked out, we had lunch, we went to the train station. [we had an amazing lunch, so good that I didn't take a single photo. Seriously the food was just that good. ] thanks to the Courtney for providing chauffeur services!

Got to the train station and realized I had a call from unknown a.k.a. Some Dr.s office ( or my friend Dan). It was Dr. Zobari's nurse, Melissa. They had a "simulation appointment available tomorrow morning if I wanted it.". This is the ct scan they do in advance of radiation to determine what kind and exact placement of the radiation-- a practice run with everything but the actual radiation. So we are at the station with a train leaving in 2 hours... And we need to decide if to stay or go...

Call Melissa back, she's not at desk; jump through hoops to get human to help, she pages Melissa who's with a pt. no response -- she says she'll have her call as soon as she's done. Thad calls hotel, yes there's a room available will hold it. I talk to ticketing yes we can switch tickets if we need to, currently there's space on tomorrow's train. T says I should call back and book the appt, we can cancel if Melissa says we can do it later next month. Call to book the appt. Melissa answers... Says yes there's a window, 6 weeks from surgery which means 4 weeks for the simulation. If we don't do it now, we should do it within a week. We decide to stay.

Switch tickets, get taxi back to hotel. If things didn't happen as they had, including Jackie being a bitch and kerfuffling my appt I may have missed my window. It's one thing if they medically decide I'm not a candidate. It's another if I missed the short course cuz of stupid communication error.

Tomorrow I go and get the simulation (10am pretesting, 11am simulation, done by noon). Thanks to my bosses and T's for being so understanding -- and thanks to the family for flowing with the jumps and jerks of this process.

Maybe I'll have short course radiation and NO chemo... A girl can dream.

 

 

 

 

 

 

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