my analytical mind

I've been thinking alot about our life since Eileen's diagnosis.  Actually been reading her blog, sort of reliving all the trips and turns.  It's been super helpful to have that document of that aspect of our lives...even before she passed away.  I don't have the best memory all the time, and I really rely on little cues to help me connect the dots.  Her journey (I hate using that term, but for lack of a better word....) had so many hills and valleys, curves and straights, that I'll admit that at one time I had forgotten the whole brain tumor incident.  Maybe that has a lot to do with my own defense mechanisms- I know it was traumatic for Eileen, but for me as well.  She often told me that she felt things were actually worse for me, having to watch a loved one in pain.  I'd always set her straight but I still appreciated her view.  It was hard for sure...sometimes more than others.  Seeing her in the worst pain imaginable in the ER was really horrible.  I still can't believe how she could handle stuff so well, even when it was clear that anyone else would have been either throwing things or screaming uncontrollably or passing out.  Whenever someone told her how strong and brave she was, she'd always get a little bent and respond that she was just doing what she had to do, and you would do the same in the situation.  She was so wrong!  I would crumble!  Hell, I'd still be talking about the first MRI if I were her....I'm a complete wuss by comparison.  She seriously didn't think she was all that special on that front, but all I know is that she really was incredibly strong and brave, and strangely incapable of realizing it for herself.

So another aspect of re-reading the blog is that I keep analyzing all the forks in the road....did we make the right choices here or there?  I know what you're thinking....don't beat myself up.  I get it, I know I can't change anything and I need to be at peace with how things went.  Don't get me wrong, I really am not beating myself up, it's just part of how I'm working through this loss.  All told, I think we did an awesome job given what we were dealing with and I don't have many regrets.  I do have some though, but even those regrets are only regrets now that I have hindsight.  At the time, we seriously did everything right at every fork.  What are my regrets?  Well, a couple biggies are how the whole hospice thing went.  I wish we would have shopped around, done a little research on how hospice works, and what hospice organizations were available to us.  Despite our troubles with hospice, we still made it work....mostly by force of Eileen's tenacity to advocate for herself.  Related, I definitely would have hired our own doctor right from the get-go.  Prior to her diagnosis, Eileen was a healthy young woman so she didn't actually have a primary care physician.  She had gotten one just prior to the diagnosis but she didn't really have a relationship with that doctor.  We didn't know that this particular hospice has what they call a medical director who oversees all the RN's who actually do all the legwork with the patients.  The hospice medical director does all their "doctoring" over the phone.  That sets up a scenario where this amorphous doctor whom you've never met, never even had a conversation with, is making major medical decisions for you.  Bad scene.  Had Eileen had her own doctor, that doctor would be in the mix to help make decisions.  We got a private hospice doctor after our realization of how fucked up the system was and I regret that we didn't do it from day one.  It changed everything....her care, our attitude, our plan.

This next thing isn't really a regret, I guess, more of what I'd do differently if there was such a thing as a magical do-over.  (well....if there was magic involved, I'd be talking about some other things here too, obviously...).  Keep in mind I'm not a doctor or anything...but I feel like I'm a pretty good problem solver, so this sorta makes sense to me given my limited understanding of the complexities of cancer.  Hindsight being what it is, I think it could have helped to start intrathecal herceptin right after she had the first brain tumor and craniotomy.  Again....not even an option at the time since intrathecal herceptin isn't an approved treatment currently.  After the craniotomy, she had partial brain radiation, and then whole brain radiation after the recurrence.  I really think intrathecal herceptin treatments could have kept things at bay better (or more completely) than the radiation.  Herceptin is a targeted therapy that works with HER2+ cancers (Eileen's particular type of cancer).  It had worked effectively for her everywhere else in her body, but it doesn't cross the blood brain barrier.  I hope that intrathecal herceptin is successful for other folks in the future.  (I know it's in clinical trials now.)

Speaking of drugs, Eileen had a pretty sizable stash of a drug called Tykerb left over.  I found it recently while going through stuff in the house.  Tykerb worked amazingly well for Eileen...it quite literally melted some of the breast tumors she had.  This is the drug she used as part of a clinical trial.  When the brain tumor showed up (god damn blood brain barrier!!), it disqualified her from the clinical trial, so she ended up with lots of unused pills.  Previously, I had disposed of a TON of unused meds, but it was all the more typical/normal stuff.  Tykerb on the other hand, well, that shit is gold if your cancer is like Eileen's cancer was.  I just couldn't bring myself to dispose of it...I hoped that it could get donated to someone in need, if possible, knowing that it's incredibly expensive.  I'm not sure it's even possible to donate prescription meds, but my hunch is that in this case (tykerb) it might be doable.  I sent an email or two and heard back from one of E's oncologist nurses who said she could take it in case someone with lesser means (bad insurance or bad happenstance etc...) could use it.  I brought it over to UCSF today.  The trip over the bridge was full of memories and emotions.

It seemed like such a great idea to just drop it off instead of mailing it, but as soon as I walked into the hospital I knew I made a bad decision.  Looking around the breast cancer center waiting room at everyone, all of them with heavy stories, all of them looking for hope and cure...it was hard.  It reminded me of the fight we fought for so long, and seeing all those lovely folks fighting the same fight, and knowing how our fight ended....I couldn't even look  up.  I felt so sorry, and so empathetic.  I wanted to hug everyone and look them in the eye and say "I get it....I know what you're up against and I know how fucked it is..." but I'm not the guy to do that right now.  Luckily I was only there for a few brief minutes before I slinked away down the back stairway.  I scooted across the street to the NY style deli and had a sandwich, remembering how much E liked their egg and cheese bagel with ham because it reminded her of being back east.

I found a hundred syringes in the bottom of the bathroom vanity...likely (finally) the last of the medical supplies I need to donate.  If I remember correctly, that giant box of syringes is some more evidence of Eileen's moxy- the pharmacy only had larger guage needles at the time (more difficult and painful to inject) so she took it upon herself to order some online instead of waiting 2 more weeks for the others to arrive.  Sure, the others would have been paid for by insurance, but she was unwilling to endure even more stupid pain if she could avoid it, and her attitude was that $30 was worth it to solve the problem quickly and easily.  I have countless stories where Eileen's pragmatism and desire to make things work smoothly won out over bureaucracy and stupidity.  She was so good at looking at a stupid situation and figuring out the easiest/fastest way to get things accomplished.  There's a place down the road that takes unused medical supply donations on Thursdays, so the timing was right.  It feels good to have donated the Tykerb and syringes.

I've been keeping busy, putzing around the house and keeping Red occupied.  On Sunday, Red and I did one of Eileen and my favorite hikes in the Marin headlands.  Another "first" to navigate, but I did ok.  I know I could more easily avoid these emotion-charged activities, but I don't think that avoidance is always the healthiest way to heal.  Now, I can go there again and remember of all the nice times we had there.

I surprised myself this morning by actually going for a run (jog, technically).  It's been quite a while, and while I still don't have a handle on my stress eating, I have in fact been exercising a fair amount via long dog walks and hikes in the Oakland hills.  It's good to have Red.

Another nice diversion; I jammed with some friends from work on Tuesday night.  Just prior to the shit hitting the fan with Eileen's illness, I had pulled the trigger on purchasing an acoustic drum kit (as opposed to the electronic variety I have).  Eileen was very encouraging of me getting the kit because she saw how drumming helped me to "blank out" and relieve stress.   I received the shiny new kit in the mail right about the time that she entered hospice, so needless to say, I essentially put that in storage until recently.  As an aside, she HATED the finish I chose (silver sparkle)!  She thought I was crazy.  Here's a photo of it set up in one of the screening rooms at Pixar.  Sweet lookin' kit, right?

My brother Dave is scheduled to arrive on Saturday for a week.  I'll be happy to have him here and it's going to be so fun showing him around the Bay Area....he's never been!