Caution – this one talks a bit about death …
Throughout the climb I found myself stopping in shaded corners to both catch my breath and cry. When I think about what is to come, I put on a brave face, but I still find myself crying at certain thoughts.
When I was first diagnosed, I was struck by how some things get clear. When we were creating our wills before we went on our Going East bike tour (http://goingeast.ca), I didn’t think I like the idea of my body being used for research. Now, I definitely want my body to be used for research or medical education. I think my time working with doctors and doing research has changed my opinion on this. I also have clarity as to where I’d like my ashes spread – over the molten lava on Hawaii’s big island. These are things that I couldn’t figure out before, but now just seem to make sense. They weren’t big decisions.
I also decided that I don’t really want to know my prognosis. Prognosis is a statistical measurement of your likelihood to survive. I don’t really care about that statistic, as the only measure that matters to me is me, and no statistic can tell me that.
Where statistics are handy is in deciding treatment options. When we know that two options have the same outcome (statistically) then it is truly a choice as to which feels right.
I got recommendation from the PAMF tumor board. They are recommending chemo first regardless of my HER2 status. Chemo would start within two weeks. They need to know HER2 status to figure out the chemo mix. It also takes about a week to get approvals from the insurance company. I think everyone thinks the HER2 will come back positive. Prior to any chemo I would need a sentinel node biopsy on both sides and to have a mediport installed (not sure installed it the right word … I called it a portal the other day … the idea is that they surgically insert a device that allows direct access to a vein for chemo and other medications that are given by IV – with a port I won’t need to get stuck every time someone needs to give me medication).
We meet with the oncologist and surgeon at Stanford for their recommendations on Monday. By then we should have the HER2 status. If it is positive, then I think everyone will agree that it is sentinel node biopsy followed by chemo.
HER2 is a bit of a mixed blessing. It is associated with increase morbidity, but the treatments for it have changed a lot. They have completely new regimes which are providing to be very effective (form what I understand) – so the morbidity statistic may be based on old treatments, and the new treatments haven’t caught up yet … not sure, will need to do some more research. Whatever the outcome, we shall adapt and move forward as it is the only direction to go!