It’s September and I am tired.

It’s September and I’m tired.

Tired of talking about cancer.

Tired of wondering why me?

Tired of being strong.

Sick of being sick.

You might wonder where I’ve been all summer and what’s been going on. The answer is basically nothing. No revelations. No miracle cures. No answers. And I’m just tired of writing about it. I feel like there’s no hope sometimes and it’s exhausting to even think about.

Yesterday, I spoke with a dear friend of mine from the GIST community who’s teenage son was diagnosed the same month I was. She kept saying how strong and inspirational she thinks I am. I provided her the support and inspiration to find the purpose...to live on...because that’s what I do. That’s the role I play now in the GIST community when I agreed to be an advocate and publicly share my story.

But, I what I really wish I could tell her how depressed and lonely I am every day. How I can’t even find the purpose in living on or even a reason to get out of bed.

Since July, I’ve suffered with massive swelling in my feet. So swollen I couldn’t put shoes on. So painful that I had to crawl to the bathroom sometimes because taking a step was too difficult. Months of taking opioids to drift into a place of numbness, away from the reality I was a prisoner in my own home, unable to climb the stairs or go in the sun (back to that delightful sun allergy that leaves deep purple lesions all over my exposed skin). 

And yet, no doctor had a solution. Just to wait it out. It’s part of having cancer. That’s unacceptable to me. It’s unacceptable. It’s their job to come up with something else. And then something else, when plans A and B and C fail. All I have now is a minor addiction to dilaudid.

And so my summer passed by. I watched my friends drink frose, go to brunch, frolic at the pool on floats, and do all the things I wish I could still do. Not that they’d invite me anyways...haven’t heard from most of my “friends” in a very long time.

But I get it. I’m hard to love now. I’m not dependable. I’m not fun. I can barely hobble from my condo to my car. I’m only half alive physically. I’m dead inside. 

I spend most my days alone and most my evenings too, awake but not feeling well enough to do anything. I try to find things to do—learn Spanish, practice calligraphy, play with the kitties, journal, do household chores—but there are many hours in a day and walls start closing in. So I take my meds and go to sleep to pass the time (and because I’m constantly exhausted and my feet will have swollen into plump sausages by even small tasks like hanging my laundry).

Evening comes, John comes home. He’s exhausted from work but (because he’s a saint) immediately starts cooking dinner and doing the chores that were too hard for me to do. We eat together and watch TV for an hour before he has to head to his man cave to start his schoolwork. I’m so incredibly proud of him for what he’s achieved in his career and academics—I wouldn’t change it for anything and I know he’s doing it somewhat so we can live an even better life. So, let it be known there is zero blame on him for these feelings I have.

But soon, I’m alone again. Sometimes my mom comes to keep me company but she’s tired too from being up at 5am for work and spending her leisure time dealing with finding answers for my disease. Being terminally ill forces you to regress. I feel like a child, with everyone having to help me and take care of me all the time. I lost any agency over my physical body long ago. Now, I’ve lost my independence too. What else can cancer take away from me? 

I would do anything to have my 18 hour busy weekdays again. To have a career. To work overtime. To hit the gym and sweat out a long day. To feel sore muscles from the gym and beg my husband to massage my sore feet from a day in high heels. To be normal. Instead, it is 9pm and climb back in bed, take my meds, and wait for the morning to come. 

I guess the loneliness, the alive—but dead inside— is really my fault. Maybe I isolate myself. Maybe I’ve lost the purpose again. I should really work on that.