Making Up For Lost Joy


It is so interesting how time can either slowly slide by like soft-dripping honey (where you feel stuck in a long moment) or it can glide by in the blink of an eye. Time is such a funny thing, isn’t it?

For some reason it has been so hard for me to write this piece. I’ve sat down at my desk many times and have multiple drafts in my folder, yet I can’t seem to write anything that I feel really captures the last few weeks (months?).  Mostly I think I’ve been too physically tired and emotionally drained to really make much sense.  But I’ve been wanting to reach out and connect, since when I write I almost always feel a huge weight off my shoulders afterwards.  And I like feeling like you and I are linked in some way even though for some of us we’re just communicating through this blog.

One of the things that I know I said in one of those drafts was that I was sorry if I wasn’t in touch much after the last surgery. In fact, about a week and half afterwards a good friend of mine sent me a text:  “I don’t want to bother you if you are in pain or don’t feel like talking, but I’m worried and just want to make sure that the surgery went OK.”  Oh my gosh—had I forgotten to tell this dear friend that I was OK?  I felt horrible.  She was completely understanding but for me, it really put under a microscope just how out-of-it and exhausted I was.

The last surgery was a month ago, wow. It feels like longer. See there’s that time thing.  I want to start with the good news that still gives me goose bumps, which is that the surgery went well, and all of my doctors were very happy afterwards.  This time there were five lesions to get in the liver and they got ’em all, thank g-d!  Also thank you g-d/the universe/my guardian angels they did not see anything else while there.  I spent one night in the hospital and had a scan the next morning to confirm the results.  The second my surgeon entered the room to tell us this good news, Sean and I grabbed glances and hands and I immediately called my family to tell them (my parents were with SHL during the surgery and while I was in recovery, but SHL stayed overnight with me in the hospital).

A few days later as I was recovering at home, the pain got increasingly worse and I felt like I could not manage it on my own, so my Mom took me to the Emergency Room at the hospital where I had my surgery. No matter how long I’ve been intertwined in the medical system, there are still some things that I just can’t understand, like why it took so long for them to give me something for the pain once I got there (nurses kept coming in and out taking vitals and saying that they were waiting for the pharmacy?  It all seemed so absurd).

But then after scans my surgeon walked into the room (for those of you not entirely familiar with medical scenarios, to have your surgeon check in on you while in the ER is not just a given, but this guy is the bees knees) and he said with a smile, “Good news! It’s a kidney stone.”  This still makes me laugh when I think of it.  Now you may be thinking to yourselves, “On what planet is a kidney stone good news?” But even my Mom and I breathed a sigh of relief.  Though kidney stones can cause an excruciating amount of pain, I think that we all felt relieved that my pain was not cancer-related or internal bleeding after the surgery.  They finally were able to get me somewhat comfortable and kept me overnight for observation.

Thankfully I found out yesterday after an ultrasound and an x-ray that the kidney stone has indeed passed on its own!  Gooooo body!

Waking up the last week or two without any pain has been A-MAZING.  Not that I wish that any of you ever experience chronic pain or discomfort, but if you do, when you start to feel better it’s like the whole world is one of the kaleidoscopes you used to be enthralled with as a kid.  Everything takes on new colors and shapes (and even tastes when you finally get your appetite back) and everything just seems that much more beautiful through a new lens.  It’s definitely taking me some time to get back on my feet with my health and wellness, but I just put my FitBit back on and I am not only working on my physicality, I’m also working on being gentle with myself.  It has been a long road of anxiety around food and drink and cancer and exercise and one of my providers keeps urging me to be healthy, but to “Enjoy life!”  That may mean ice cream on a night like tonight, when it’s our first 80 degree day here in Boston.

So, I’ve written and re-written this part of the blog a million times.  Most of the times were filled with details of my exhaustion and difficulty getting out of bed in between surgeries; my fear and anxiety at the thought of the surgery ultimately not working.  But I don’t want to live there anymore; I want to live here, now.  I want to live for the days like today when I have the energy to walk and write and call friends and really be present in my own life.  It’s been a painful (physically and emotionally) time, but I got through it.

I have a lot of time to make up for, a lot of joy that was lost in these last few months, so if you see me sky-diving or bungee jumping or hopping on a last minute flight to Bali, don’t be surprised!  (OK, you got me:  More likely this is going to look like going out to dinner spur-of-the-moment, treating myself to a facial, or working hard on our upcoming Jimmy Fund Team Lozier Mini Golf Fundraiser!).

One of the things that has me living small at times is my magical thinking, but getting through these last few months with three surgeries in two months and 20 + doctors appointments and 10 + scans has me thinking:  What if you ask for something from the universe and instead of being punished, like you fear, you get what you want?  So here goes:

I get an immense amount of pleasure from living in the moment, but I am also planning for the future, whether there is a cure for this cancer or not.  Because to live any other way is not to live.   ♥