Neither here nor there

Neither here nor there, but where?  Not complaining, just explaining! This struck me when I saw two photos recently.  One from when I was very ill, but starting to improve after two months on crizotinib (targeted therapy drug for ROS1+ lung cancer).  The second, looking quite healthy, taken recently in the beautifully painted walkway, the Bridge of Hope that connects Dana-Farber with Brigham and Women’s.

It’s weird – this state of limbo (not the “place “Limbo!) that we Stage IV lung cancer patients live in.  It’s just so different from my mindset or life in general before cancer.  You see, lucky stage IV cancer patients are informed their disease cannot be cured, but can be treated, thus prolonging their life. (Some may just be told that it’s time to get their affairs in order.)  In my case when I initially asked if I could take my first targeted therapy drug crizotinib forever, my oncologist thought I meant that I thought I would now go on to live a normal life and die of old age at 100 as planned. So she felt obligated to say no and went on to say that some patients had extended their lives by more than a year on this drug.  (I know someone that just celebrated six years on crizotinib!)  Also in my case though, and I’d guess most, just to know you might be given the time you need to think about all the things you should have already done to prepare for the inevitable gives you hope.  Hope = Time, but does Time = Hope?  Probably. I’ll think about that.

But as I said, “It’s weird.”  I mean, really.  People thought I was a goner for sure two years and four months ago. I looked like I was and everyone knows the stats are dismal for Stage IV lung cancer.  And here I am now looking quite healthy.  I wonder what people think – cured? Nope, I wish.  Do you do like the song says and “live like you were dying”?  What’s that look like anyway?  I wouldn’t want to live the way I was during the few months we thought I was dying.  Now if it means do all the things on your life list – well, now that would be great if one is physically able to.  What’d we do?  Got two Nigerian Dwarf goats (complete with a barn at home and at camp), modified Camp Gramma by having a mom there to help Gramma, and tried to get back to a normal life.  Eventually I stopped teaching to focus on my health.  Not on my life list, not even the goats.  Alpacas were though.  I’m so glad we got our goats!  They are just wonderful, fun, loving, and very entertaining.  Alpacas are much more work.

Another weird thing – clothes.  I was just starting to replace things from the fire when I got sick.  Now I don’t want to invest a lot in things I either won’t be able to use or won’t get good use of.  Silly?  Maybe.  (For example instead of replacing my Marmot down jacket I bought a White Sierra one that will keep me warm for the short time I’m out in the cold.)  And then there’s the fact that since radiation I can’t stand certain clothes.  Or that when my tummy bloats I just want my comfy pants.  I’ve solved pretty much all of it by buying a few of a few things that are comfortable and presentable enough, and have no metal so I can wear them around and even to appointments and leave them on for scans.  Footwear is a challenge.  Still working on that.  Weird, right?  Being challenged by knowing what to buy for footwear when you’ve been wearing the same size shoe for 50 years? Whether it is meds or cancer, my feet are not what they were, and that’s weird.

Yup, weird.  Like being stuck.  Feeling ready to get back to really living, but not feeling quite well enough to.  Just when you think you know what this life can look like, something changes. I know that happens from time to time for everyone, but it is a way of life for Stage IV lung cancer patients.  And all the while life goes on normally around you as it should be and as you want for it to.

There are more examples, but you get the point. Neither here in the present fully, nor there in my past where I lived fully for 58 years.  Not really knowing how to think about the future (except to be hopeful), living for the present, but differently.  Yet I am grateful to be here, to have hope, to be able to enjoy the everyday every day.  I’ve had so many firsts since my diagnosis  – I think I’m more aware of them now. A recent first is watching a family of fox kits.  But I’ve had many others.  Things that being given the gift of time, the gift of being able to be home, and the gift of being “well enough” have made possible.   Some people, many really, with this disease are not so lucky as to be able to ponder its weirdness or to be given this gift of time.  And yes, TIME=HOPE.  Always, always have hope.

Oh, yes!  I have checked something off my life list that I bet I never would have if cancer hadn’t shifted my focus.  I’m in the midst of publishing a children’s book that I wrote in 1991.   Very fun to think about.  Written in my past life, being illustrated (not by me – ha!) in the present, it will be ready in the future!

Here I am enjoying the everyday every day with Dan and the family, and feeling ever so hopeful about the future.

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