August 31, 1998
I'm writing this in Manhattan, during a short stay here with Shaz.  We're cat and apartment sitting for her sister and brother-in-law until tomorrow.  This has been just a three day trip, but a getaway nonetheless.  Usually when I come to New York, I struggle with the overstimulation of it all, but I don't seem to be having a problem with it this time around.  All the chaos is a welcome distraction from dwelling on the difficulties of the familiar. We came here Sunday, on my infamous third day after chemo, this being chemo number five.  As usual, it was not a good day, though the addition of a new drug to my arsenal seems to have eased my symptoms ever so slightly.  When I told my doc about my sleepless nights post-chemo, he prescribed Ativan, an anti-anxiety drug.  It did the trick and allowed me to sleep, and I think that has helped with the side effects this time around.  Every little bit helps at this point. 

My energy level has not allowed us to do a lot here, and one of the cool things about being in New York is that you don't have to go far to do and see a lot.  We can get great food delivered right to the apartment and have been doing just that for dinner each night!  We did go to Ellis Island today, which is something I've always wanted to check out.  Other than that, we've just been hanging out at the apartment and enjoying the view from the balcony here on the 16th floor.  Sitting on a concrete slab a couple hundred feet above the street, it's a world away from our quiet little house in Northampton.  Not only is there quite a view of the Upper East Side, but through a fortuitous gap between two tall buildings we have a clear shot of the Chrysler building, close enough to enjoy its art-deco profile, which reflects the sun during the day and lights up dazzingly at night.  I'm sure if you live here, the constant noise must fade into the background, but I hear every car horn, squeaking brake and bus engine roaring by.  It never ceases to amaze me how the noise here does not slacken at  night.  You can wake up at 3 AM and it sounds as
loud as the middle of the day.  It really is the city that never sleeps, and if you're not used to it, you might not ever sleep either.  So far closing the windows and
turning on the AC has kept the din to manageable levels.  I'm finding myself slightly amused that I'm really glad to be here.  Though I appreciate New York in a lot of ways, I usually feel ambivalent about coming here due to the overwhelmingness of it all.  However, as with many things, my illness seems to have brought out a new sense of appreciation in me.  It's a pretty cool place if you're in the right frame of mind.  Now I'll just have to return when my energy level is back to normal so I can paint the town a bit... 

Now that the Neupogen has allowed me to resume a semblance of a predictable schedule, I've been trying to get back on track with a number of areas of my life, including work.  It's continuing to be a struggle, however.  Just when I feel like I'm getting things rolling again, I usually get hit with chemo or some side effect of it that throws me off again.  It's frustrating and I'm having to learn to accept that things just aren't going to be "normal" again for me anytime soon.  This is an easy thing for people to tell me to accept, but until you actually have to do it in your own life, don't underestimate it.  I think many people get caught up in the philosophy that work is somehow this burden that we perform to get a paycheck and that it should be a cinch to just let it go for awhile.  I think anyone who believes this is really not thinking about what this kind of thing can mean for a person.  I'm sure some folks work for a paycheck only, but in reality, most of us derive a decent amount of our own self-worth from our jobs.  Having to cut back and not meet your own or other's expectations in our achievement-oriented world is not something to take lightly.  Having an understanding work environment helps tremendously, and I consider myself lucky to have that.  But the real struggle goes on within yourself.  Finding the balance between pushing yourself too hard and still doing what you can reasonably accomplish is difficult. 

This balance extends into many other areas of coping with a serious illness.  There are so many ways to second guess yourself, especially when you are surrounded by more information than you can possibly process.  I told my friend Katja that my reading list and stack of books to read on getting well is now so long that I will definitely have to get better since it will take at least another 50 years for me to read them all.  Exploring alternative and complementary type therapies over and above the chemo and radiation can be a minefield in and of itself.  Everyone has their own theory or pet remedy and trying to evaluate which might help me ends up being more of a crap shoot than a real rational inquiry.  Even researching studies doesn't help much since studies on alternative treatments are few and far between and those that do exist are often contradictory.  Of course, this doesn't mean I have given up on these treatments at all, but I'm still having a tough time figuring out how much to do and second guessing my decisions.  Anyone out there who struggles with being a control freak, I recommend you contract a scary illness so you can
learn to let go.  I'm still working on it myself. 

Meanwhile, time marches on and a mere week and three days from now I will be officially half done with chemo.  In some ways, it seems like it's gone suprisingly quickly, but more often it feels daunting that I still have so many to go.  I'm starting to develop a coping technique which consists of attempting to have an out of body experience for four days out of every fourteen.  If I'm lucky I can at least make it last for two hours during actual treatment.  Then I develop amnesia for the lovely ten days between treatment and the worst of its effects.  Then Shaz checks our Kleenex supply to be sure we have enough for my pre-treatment breakdown which has been occurring with regularity the night before treatment.  Then the cycle begins again.  One day at a time - it ain't just a bad 70's sitcom. 

It has come to my attention that some folks are concerned that my ramblings of late have been less positive in tone, and this has caused some level of concern that perhaps I'm not doing so well.  I don't quite know how to explain this, but in some ways I feel like I'm actually doing better with this more difficult attitude.  Those who know me know that the ray of sunshine routine is not my style to begin with, and that this does not mean I am really depressed or in some kind of downward spiral.  When you are dealing with truly difficult obstacles in your life, it's going to make you crabby.  It's going to make you angry, resentful, frustrated, sad and helpless at times.  It's better to accept and admit these inevitabilities then pretend everything is fine.  I still believe as strongly as ever that I will be in full remission by late winter and that I will make it there relatively intact.  I just plan to complain a lot on the way. 

Well, it's clear I'm in a rambling mood tonight, and since we're coming up on 12:30 AM, I guess it's time to wrap this up and get some much needed sleep. 
Goodnight and until next time, I leave you with my new favorite quote of the day... 

"It takes courage to be afraid." - Montaigne 

Carpe Diem 
12:29 AM 
   

 

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