30th post. 1:50

Six weeks of radiation=30 sessions…5 days a week.  42 days straight of concurrent  chemo with said radiation.  This is what the first stage Standard of Care looks like for malignant gliomas like mine.

Again, my treatment is basically mandated, unquestioned, for one reason.  My age.  I am in my 50’s.  I don’t act like it, I don’t feel like it…but admittedly, I probably look like it.  I haven’t got the courage to “reduce the smiles lines or brow lines”, “enhance” or “bring back” that plump youthful skin I once had.

We are not embarking on this because I am fighting for my life.  I am not.  We are trying to extend the time before tumor regrowth.  Untreated the research says 3-5 years.  Treated it is 5-8 years.  My doctors are trying and believe they can, not guarantee me, but with a high degree of confidence, push out the regrowth 10, 15 maybe 20 years.  That is a great motivator when you are feeling like you’ve been shot with a tranquilizer gun due to radiation.

However, after a few days in on proton radiation treatment, we’ve had a little wrench thrown into our plan.  The gist of it is, that my full genome sequencing which is being done concurrent to treatment, won’t be complete for three more weeks.  And this for  “rush” results.  That is how difficult and sophisticated this is. Genome sequencing is the future of cancer treatment.  It is AMAZING.

It is also ridiculously expensive.

However, my family has an obscenely high amount of cancer cases on both sides of my family.  My mom said to my husband Will about 6 months ago something like , “I don’t know where this comes from.  I know Tom (my dad) and his family have had cancer…maybe it comes from that, I just don’t know?”.  Will and I started to laugh and I said “mom do you know how long it takes me to fill out these forms each time….when I have to go over paternal and maternal sides and list all the cancers.  Each time the medical person be it a nurse, or a scribe or a doctor all marvel in disbelief…it’s like everyone in our whole family for at least two generations has been hit with it!”

So hah, hah…funny.  However, what isn’t funny…is that the majority of the cancers my family has had,  are all in the same genome cluster.  Which means, I might have, as could members of my family, one of several syndromes – like Lynch, that would change the risk of the radiation I am currently doing.

There is a 1 in 50 chance that the radiation could mutate what was otherwise a completely harmless, healthy cell and turn it into a cancer.  This would be a radiation induced malignancy.

My father use to say “I would rather be born lucky than smart”.  I couldn’t agree more.  Both of us have always been lucky.  A 1 in 50 possibility works for me.  I could no sooner pull a specific card out of a full deck if I wanted to…so we started.

That is when the geneticists and the scientists from Fred Hutch and U of W (I love them both so much) said, wait a minute…we should screen for these Syndromes…she looks like she could definitely have one of these mutations.

Nothing you can do about that.  You are born with it.  However, the key thing to know is that if I do in fact have one of these Syndromes my chance of the radiation mutating one of my healthy cells and turning it into a radiation induced malignancy goes to 1 in 5.

It’s still better than 1:2 or 1:3…but I have been to Vegas and I have bet on worse odds…and now I am betting, potentially, with my life.  That is what I would call a high stakes game.  Ironically, we are doing this to push out a regrowth to 20 years.  Now if I have this Syndrome, I have a 1 in 5 chance I am going to create a whole new cancer…soon.

Will thinks I should stop treatment.  Doctor says I can stop for two days, that is it.  Otherwise it screws up the treatment.  Plus, all the research says you need to begin treatment within six weeks of craniotomy to have the best results (fewer cancer cells that have been left over to cause trouble before getting zapped).

I decide to continue but now I have to find a way to get an indicator on the real possibility of these Syndromes they are concerned about.

Enter my friend Megan.  Well, again, as the luckiest girl I know, Megan happens to work for a ridiculously cool start up (at the time) biotech company called Arivale.  Brain child of renowned biotech engineer, Dr. Lee Hood.

I joined Arivale when they started taking clients.  Who wouldn’t want to know ways to improve their wellness, ensure they were doing all they could for their heart, their body, inflammation, diet.  They do full panels with blood draws your Internist or family doctor won’t do because it is way too expensive.  But knowledge is power.  If you have high blood pressure – WHY do you have it.  If you have high cholesterol – WHY?  And don’t say its just genetic…it’s not.  Arivale digs deeper into the data to find out markers and things you can change to create a healthier life and reduce ailments like high blood pressure…or a million other things.

We were having dinner one evening and I was telling her about this problem and the fact I had only two days to decide whether to risk it and keep going, or stop entirely.

A very long story short…there are angels who are brilliant scientists that work at Arivale.  I was given enough data to decide with about 99% confidence to continue my treatment, and that I would find out most likely I do not have these Syndromes.

Two weeks later my full genome sequencing came back negative.  I mean, they found stuff I don’t like having for sure, but no syndrome.  My odds are back at 1:50.

I am good with that.