life

Yes, I’m Tired of Cancer Updates Too.

Not my last port stick, but last time I’m hooked up to an IV tower. Yes, we all wear masks the whole time, now. Check out my total lack of eyelashes!

Disclaimer: I didn’t sleep until 5am today (3 whopping hours WOO) because I’m out of sleep aids for the steroid chemo day insomnia. This post is not perfectly happy, nor is it perfectly sad: it’s likely to ramble some and go off on weird road not taken tangents. My apologies for the tired writing. Feel free to take the overall message that I’m on a break now between chemo and radiation and skip the rest, if you’re a tl:dr person.

Yesterday was my last chemo treatment. I have some weird emotions about that, which was unexpected. I cried a while in my car after I left Oncology, both happy and not quite happy tears, since I AM cancer free (and have been since my lumpectomy last November) and I lost so much time in isolation from December through now. It’s been a difficult seven months.

Also, my Oncology doesn’t have a bell. They do a certificate everyone signs (which is lovely and like a congratulations yearbook page). The reason WHY they don’t have a bell, however, absolutely pissed me off. Apparently someone in MN (not at my Oncology group) made a big enough fuss about the bell being “unfair to people like his mother, who will have chemo for the rest of her life and never get to ring the bell” that he made national news. So…this man decided for everyone else going through cancer treatment, a treatment he didn’t go through himself, that celebrating the last chemo infusion is not appropriate expression of feelings. FUCK. YOU. DUDE. How about you don’t get to make that decision. How about until you’ve thrown up for days at a time, or had sores in your mouth that made it impossible to eat, or couldn’t walk up your goddamned stairs because your legs are too weak, or had all your hair fall out, or had to not touch or be near ANYONE for months on end because catching their cold could kill you, you don’t get a fucking say in HOW WE CELEBRATE BEING FINISHED.

OH BOY, do I have FEELINGS about this.

I’m SO. FUCKING. TIRED. of people (primarily men, but not always) thinking they know what it’s like to go through chemo because they’ve “seen/helped someone go through it” or because they’ve had some unrelated medical crisis. I know it’s an attempt at being helpful (usually) but it’s not the same as facing the possibility of dying from cancer now or in the future, or going through the actual hell of poisoning yourself for months in hopes that recurrence chance might be lowered. And this guy, whoever he was…well I sincerely hope he’s never in the chair himself and discovering his feelings about walking out of hell intact are silenced or deemed “inappropriate” by some jackass who’s never been through it. Yeah, I’m salty about it.

(Please note I GET that it might be awful for people who will always be on chemo to extend their life expectancy, and I think that should be addressed in the clinics with something, too.)

On a better note, last night I came home to a noisy boisterous car parade outside my house (appropriate social distancing celebration ruckus for my neighborhood), complete with 2 ceramic bells I got to ring and smash on my driveway. And I totally did, and it was WONDERFUL. I may have put some rage into that smash…they broke into many tiny pieces and all over the driveway. It was SO good.

I’m sure people are tired as hell of cancer-posts. I am, anyway. I do still have a few months of radiation appointments coming up, but the worst of this is now over and I have at least a three week break to grow my eyebrows and eyelashes back (I hope) and recover some. So, I did a little list of 12 Milestones of Chemo, sans any partridges or pear trees. I’m not a lyricist, obviously.

  • 12 weeks of taxol
  • 11 eyebrow hairs left
  • 10 tingly fingers…
  • 9 months of treatment
  • 8 weeks of weight loss
  • 7 I have no 7. Chemo brain.
  • 6 infusions alone (thanks covid)
  • 5 AWESOME nurses
  • 4 Red Devils
  • 3 lumpectomy scars
  • 2 trips to the ER
  • And a boob-box MRI

Yes I’m bad at writing songs. Not sorry.

The thing is, there are moments in a life that really do completely change a person’s outlook and priorities, making a distinct before/after line in the sand sort of shift. Some are positive gates to traverse (in no particular order): getting a first job, graduating high school, graduating college (if that’s the path taken), getting married, buying your first car, moving to a new city alone, having the first child (I presume that’s a major before/after change, but I don’t have kids so that really is an assumption), etc.

Other milestones are less awesome. Divorces, job losses, accidents, disasters, etc. You know what’s hit unexpectedly in your life that completely changed you forever: I could probably fill pages just with events.

Cancer is a death, even when you survive it. The person I was last year at this time is gone, and there is no going back. I have different priorities, different fears, doors that are now permanently closed to me, doors I don’t expect to ever open again. I learned new things, a lot of which is stuff I hope no one else has to find out.

  • I know how much physical pain I can take before I cry. Turns out I have a pretty high tolerance, but the shooting nerve pain is pretty awful, and nothing fixes it.
  • I know how much throwing up I can do before I get really REALLY angry at the universe and scream curses at the toilet in between heaves.
  • I know I can eat 5 lemon drops (because I can always taste those) before my mouth hurts from the acid and my face turns inside out from the sour.
  • I know what 7 months of seeing nearly no one is like. All you folks fussing about the weeks of stay at home orders are lucky it’s only been weeks. I have support, and I had visitors before Covid, but I also had a couple months there where I couldn’t be around anyone with any virus and many of my support peeps were really horrendously ill this winter/spring, and now with Covid I haven’t had anyone with me at Chemo or able to help in the house for a couple more months…so I did way more of this alone than anyone anticipated.
  • I know that life is incredibly short, and there is NO TIME to fuck around with the important things because there are no guarantees.
  • I know how much TV I can watch before it affects my mental health.
  • I know that ingesting yew as a poison would be one of the most horribly painful deaths out there, judging by the nerve pain that comes along with getting it as a chemo drug. No thanks. Longbows yes, poison no.
  • I know that I HAVE to finish the Banshee book this summer, and the book proposal I want to submit to Llewellyn Publishing, and the bazillion short stories that popped up while I was lying in bed too tired to move much. I’m working on those, and some will be published here (either snippets of chapters or full short stories, for the fun of it).
  • I know that oncology doctors and nurses are some of the coolest and most compassionate people I’ve ever met. And I will MISS them, even though I won’t miss the needle in my chest or the poison drips.

I’m missing a lot, I’m sure. I have more thinking to do on working out who I am now and who I want to be, since in a couple months I’ll be “post cancer” and hopefully have more energy to actually DO things instead of just THINKING about things (while I’m too tired to act). I know I won’t actually be considered a survivor and out of treatment until my radiation is done this summer. I hope I can have a real hug by the time that’s over, likely sometime mid-late July (I’ll should get the actual schedule tomorrow, I hope).

But being done with chemo means I’m over the worst of this shit, and I can’t wait to get my port removed, and I wonder if the hair coming back stark-white will stay that color.

That’s enough for today.

5 thoughts on “Yes, I’m Tired of Cancer Updates Too.

  1. You are one tough lady Jess. I read your whole post and am so impressed. You deserve to ring bells and when you can visit l have a big one out back for you to ring. I’ll text you a picture. It’s the bell that was on the swing pole. Love you to the moon and back. With great respect, Grandma

    Like

  2. I’m so happy that you’ve finished your treatments!! And you’re amazing and I love you. That’s really all – I just wanted to throw those words in your direction.
    I’m really hoping we can get out to there and see you sometime after all of everything has settled down.

    Like

  3. You’re a very determined strong woman Jess and you’ve given me a whole new perspective on what suffering truly is. I’m so happy for you that you’re done with chemo. Things will get better. I want to see you when this damn coronavirus is over and give you a big hug and tell you how much I love you. I’m proud of you for being strong thru this despite the suffering and loneliness. Your writings teach a lot about dealing with cancer and how terrible it is. I’ve been moved and enlightened. Thanks

    Like

  4. I am glad you got to ring a bell somewhere. I don’t understand why people take out their anger on others without thinking. See what you have been going through puts life being quarantined into perspective.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.