I’m Back

5.26.22 All or Nothing

I remember when I was younger, the panic that would set in when I got behind on something.   Over the years whether it was a journal, a food diary, a daily gratitude log or recurring newsletters, the perfectionist in me wanted to set it aside if I couldn’t faithfully record every day, week or month as planned.

I have countless unfinished notebooks with the beginnings of something great, only to have been abandoned when the momentum was lost.  I’m writing this now to explain the disappearance of my blog posts.  The feelings continued, the confusion, questions and thoughts, but somehow by the time I went to post them, my mood had changed so drastically that they no longer felt authentic.  Now I have numerous posts about this surreal journey, all sitting on my desk top, unpublished because I’ve moved into a different space.  And because if I couldn’t do it right- all in order at the appropriate time, I ended up posting nothing.

Today I am recognizing that being present and honest is more important than perfection.  That showing up at all can be just as valuable as striving to maintain that existence day in and day out.  We can all try to be the best versions of ourselves every day, but can’t beat ourselves up or abandon that aim on the days that we’re not.

So yes, it would have been nice to have been posting, in chronological order, all of the observations I’ve written about over the last few months, but in an effort to accept my simply showing up and moving away from perfection, I am going to post them all now.  Read what you want, take what you will from them.  But thank you as always for the permission not to be perfect, and to exist somewhere in between the all or nothing.

4.25.22 The Last One Doesn’t Mean The End

My feelings about this last chemo treatment are so mixed… and confusing.  On the one hand, I feel celebratory!  This is 4 out of 4 and I still mostly look like me, mostly feel like me and truly feel like the hardest part is coming to an end.  But as my doctor reminded me this morning.  I’m not quite there yet.  This is still 25% of my treatment.  And the effects are cumulative which means this last one will probably be the hardest from which to rebound.  That of course doesn’t work in my mind, because it took me a week and two days to feel better last treatment, so I’m giving myself exactly a week and 3 days this time.

The harder part is recognizing that I could still lose hair.  That I will still feel lousy and I will still be dealing with the annoyance of the chemo fog.  It’s not like over and done.  I’m just ready to be back to being me- busy without limitations, alive without the major lows… but at the same time, I’m scared of not living up to my own expectations.  Of wanting to push faster and put this behind me and feeling disappointed and angry that I can’t… yet.

Can’t… yet… is a pretty powerful reminder.  Can’t is not forever.  Maybe just for right now. Not yet.

On facebook women posted pictures of themselves hitting a gong after their last round of chemo, in celebration of that triumphant final moment!

I was already anticipating the same feeling of success, exhilaration and relief!  Barry and I had a celebratory meal the night before, and I took several extra glances in the mirror at my full head of hair before I went to bed.

The next morning we had to be up early to get to Dana Farber by 8:30.  I gathered up my bag, still packed, ready and tucked under my desk where it has been stored for easy access these last 4 months, recognizing that I was doing my double check and adding snacks for the last time.  Cold cap, conditioner for making sure the cap doesn’t stick to my frozen hair, electric blanket, cold socks and gloves so I don’t get neuropathy, computer, and workout band for extra tightening over the cap.

My doctor is happy with my tests results- white blood cell count etc. but does point out the areas where I have lost hair and reminds me that I can continue to shed for an undetermined amount of time post final chemo.  (aka P.F.C)

As usual, the 5 1/2 hours pass quickly.  And when I am done, we disconnect from the Paxman machine, pack up my things and slowly ease the cap off my head.  For what I hope will be the last time ever. There is no gong when I leave.  No emotional goodbye.  I just pack up my stuff, head to the car and we drive home.

5.7.22 After

Chemo is over, but I’m still not done.  I still feel the side effects even though I’m so ready mentally to move on.

I am not patient.  I am not tolerant.  I am not always very kind.  I am judgmental and frustrated and quick to criticize.  If you know me, you might say this doesn’t sound like a very accurate description of who I am, but it has been how I regard myself lately.  I try to self-correct and remind myself that I would never speak to anyone else with such severity.  However I hold myself to a different standard and can only see my short comings at the moment.

My dear friend reminded me this morning, as I started to berate my body for being so slow, tired and out of shape, that it was in fact working really hard to process these chemo drugs and to keep everything functioning despite my cancer.  But right now I perceive my fatigue as laziness, and my body as an uncomfortable vessel.  The face that looks back at me in the mirror is unfamiliar, puffy and aged,  framed by dry, unruly frizz, that must be placed in a way to hide the lost hair along my hairline and the wiry grey that remains.

The past 6 weeks have not been easy.  The cumulative effects of the chemo have been harder to push through - the fatigue, the fog, the nausea and bouts of depression.  It’s as though my very existence has been put on pause, interrupted only by the moments and distractions strong enough to temporarily re-activate the play button of my life.