Friday, April 7, 2017

And now, I wait

I had my CT scan done yesterday.  The purpose of the CT scan was to look at the tumors since we started chemo, and to see how they are responding to the treatments.

In theory, this should be simple.  If the tumors have shrunk, I continue with chemo on Monday as scheduled.  If the tumors are larger, we look for another treatment.  If they are basically unchanged, I'm not sure what we will do.

But, the calendar is a confounder here.  I had my previous scan on election day - a day that will live in infamy for many reasons.  I was scheduled to have surgery in January, but two new tumors were found on the election day scan at the last minute.  That is, they were on the scan in November, but not found (small size) until January.  So, they canceled the surgery and sent me to chemo instead.  I assume those 2 tumors grew somewhat in those 2 months.

So, what if those tumors from election day grew somewhat until early January, and the chemo has been working since then?  It's possible the tumors will actually show up as bigger than in November, but the chemo might be working.  How do we determine if that is true?

If the tumors are smaller, it's easy.  But, if they are slightly bigger or the same size, we can't rule out that growth happened from early November until early January, and it's since been arrested by the chemo.  I honestly wish we'd done another CT scan at the start of chemo to have a better baseline.  Yes, my body has been subjected to a lot of radiation.  And, to that end, I think one more CT scan would have had more value than not doing it.  Radiation is not my biggest opponent when I have tumors growing in my abdomen.

So, I have to hope we get a definitive answer here, and not something that indicates the chemo "might" be working.  If it's working, I want to stick with it.  I hate it, but if it's working, I'd be stupid to change paths.

If it's clearly not working, we have to change to something else very quickly to try to arrest any ongoing growth.

And, if it's in the grey area, who knows what we will do?

Since my medical oncologist has left UVM Medical Center, I feel like coordination and communication (both internally at UVM and between UVM and Sloan Kettering) have taken a hit.  I'm not happy with the way info is being passed around, the way decisions are being made, with the doctors that I'm seeing (I'm seeing different doctors than I was told that I'd be seeing), and the complete lack of communication with MSKCC.

I think that it's likely time for me to step up, be louder and more demanding, and make sure the right people are involved in these decisions.  It's not enough to "like" the doctor.  I need a scientist who understands a lot of stuff that I don't understand, and I need that person to understand math, treatment options, and likely outcomes, rather than making me feel good during an appointment.

There comes a time in treatment where we have to be our own best advocates and that time is now.

I'm guessing that after I get the results (either later today or Monday), I am going to make a trip to MSKCC to discuss the results.  I need that half of my team in on this process.  I need to be sure that everyone is considering all of the options, and that everyone understands the implications of the 2-month treatment delay.

If I won't fight for myself, I can't really expect the other actors to do it all for me.

So, for now, I wait for the report.  And, after I have the report, I have a lot of people to coordinate with, so we know that we are doing the right thing at the right time for the right reason.

If someone was buying my company's software, they should have that same expectation of service, accuracy, and enthusiastic support from our side.  I need the same from my doctors right now.

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