Round 13 Complete

Just got back to SF from LA this afternoon after completing a 24 hour infusion of my latest treatment drug, Yondelis.  The is the second dose of this drug which means that before I go for my next round I get "scans".  Specifically, I will get a CT scan of my chest to monitor the activity of the tumors in my lungs.  The outcome of these scans will determine if this drug is working, and I continue on it, or if it not working and we need to find another option.

Scans are a tough part of this process.  There is a lot of apprehension, as you would expect, before each one and I have had bad scan results before - in January, April, July, and September of this year.  Each account showed signs of growth and/or new tumors in my lungs.

After the actual scan I have to wait for the doctor to meet with me and deliver the news.  In my head, before meeting with him it always goes the same way.  He walks in with a mystical look on his face and sits me down in a serious manner.  Then says something to the affect of, "I've never seen this before!  What have you been doing?!  The tumors are gone!"  I play out that scenario or something similar over and over in my head as if I can manifest the outcome...however unlikely it may me.  I have to hope, and  pray, and visualize, and pull any positivity I can for the best.....and at the same time prepare for the worst.  My experiences so far haven't been as I had hoped.  I shed some tears, take some time to think, pull myself together, and get ready for the next step.  There is a lot I cannot control in this  journey, but I can control my positivity, what I put in my body, and how I treat my body.  That is what I must focus on!

With these scans, and the determination of my future less than 3 weeks away I have to prepare for my next options.  Again, the hope, the goal, the dream is that this chemo is working to shrink the tumors and we will continue to administer this drug.  But, if does not give the desired outcome we have to move to another option.  With that, I have a few weeks to plan the next option.

The options as I see them now are this (again, only if the current treatment is not working):

1) The clinic where I am being treated now is suggesting moving to Ifosfimide.  I have been on this drug before and although we don't have data to attribute shrinkage (there are more applicable scientific terms, but we're gonna go with shrinkage) to this drug, it did at least stave off any tumor growth while I was on it.  It is a tough one, a 14 day cycle (I did 7 day inpatient treatments for 4 rounds at Stanford that may have been the most physically difficult part of this journey so far), lots of fatigue, sickness, etc.  Not fun

2) I am applying for another trial at the National Institute of Health in Maryland.  This trial is said to have had good results so far.  Trial acceptance is based on some blood sampling looking for certain proteins and some other stuff I don't quite understand.  I completed the blood tests this week and if I fit the criteria this too may be an option

3) I am also researching surgical options.  I wanna get these F&%*$&ing things outta there.  This option is dependent on a Thorasic surgeon's thoughts on success of the surgery and willingness to do it. I have some surgeons that I am reaching out to to explore this option further.  All would prefer to see some systemic results - that is to say control or shrinkage (it's just a weird word) from the chemo prior to surgery.

4) Weed oil, alkaline diet, ketogenic diet, massive amounts of LSD, I have no idea,  There is a lot of alternative treatment out there and it is all an option at this point.  Know of anything good??

That's the medical update.  Let's get back to the fun stuff!  I have a few weeks off!!  I will be pretty down the next few days, but planning out options for more adventure time.  Still looking at a Lake Tahoe paddle board trip if the weather looks right.  Otherwise, learning to kite board, getting my skydiving certification (I want to throw on one of those squirrel suits), lots of options.  Ski season will be starting soon and my adventures will become very winter focused at that time.  If you have any ideas let me know!!!

More fun to come soon!!

"Survival depends on utility, but it also depends on joy, for joy is the organism telling itself that it is all right" - Deep Survival by Laurence Gonzales

If by any chance you don't know how to reach me....
jamieschou1@gmail.com