10 Years of Living with Leukemia

This month marks a big milestone … the 10th Anniversary of my leukemia & lymphoma diagnosis. I have decided that this is something to celebrate. After all, I am still here, still fighting, and still no closer to giving up on life—I have far too many things to still accomplish. So I decided I should see what anniversary year it is, and found that it is Tin. Perfect.

What better way to celebrate 10-years than with the Tin Man from the Wizard of Oz? After all, getting a cancer diagnosis is a lot like being swept up by a tornado and finding yourself in a strange land after dropping out of the sky. Then, before you can get your bearings and come up with a plan, you're surrounded by all sorts of people offering advice. If only you X or maybe if you Y … all well-meaning and helpful, but notice, NONE of the munchkins traveled the road with Dorothy. They couldn't. And this is not a road I'd wish on anyone else.

Don't worry, I'm not leaving out the Wicked Witch—SHE'S the cancer in this story. 🙂 So off you go on your journey to find the wizard, aka the magic combination of things to keep you as healthy as possible while living with the disease. You have no idea what's ahead, but have been told of treacherous country and winding, unsafe roads.

My Road:

I thought I'd take a few moments to recap my journey over the last 10 years.

  • July 2013 during a routine exam, diagnosed with leukemia, which had been caught at the very beginning stages and was told it would be a slow progression disease and I may not need chemo for 10-15 years.
  • October 2013 further diagnosis based on additional test of lymphoma hiding in the blood stream. Additionally, diagnosed with two sets of abnormalities that make my particular cancers very aggressive. Let's just call them the flying monkeys that swoop in and attack periodically.
  • November 2013 saw the start of my first set of chemo infusions, which lasted for a 6-month period.
  • May 2014—Full Remission
  • April 2016—Remission Ended 🙁 Begin watchful waiting something I do not do well.
  • October 2016—My blood values were out of whack, but the oncologist felt we should still watch and wait. So my general state of well-being kept deteriorating, fatigue levels increased, etc.
  • December 2016—After some difficulty fighting off a skin infection, and identification of some lymphoma nodules, the oncologist determined the cancer was becoming too aggressive, so it was time for treatment again … only this time it was a daily oral pill. WoooHoooo!!!
  • For everything in life, there seems to be some kind of trade off, and with taking a daily pill, the suppression of the immune system meant that while not having to go through chemo infusions, I did need to have infusions to boost my immune system regularly (about half the year each year)
  • January 2019—Hospitalized with Scarlet Fever, I had to come off the pill (due to the suppression of the immune system any time there is infection, you have to stop taking it). Since I had been on it for two years and was experiencing several side effects, we decided to keep me off it for awhile.
  • Remission only lasted 5 months and by October 2019, I was back in the chemo chair for infusions using a different protocol than the first time round.
  • March 2020—I had finished the chemo, but wound up in the hospital with what the doctors decided was chemo related infections. Let's just say they were awful enough I don't ever want to have to fight those off again.
  • August 2021—Visible lumps identified and new chemo course ordered … both oral and infusion. While one of the lumps went away as soon as I started the new protocol, the other didn't, so I finished the year off with radiation on top of chemo.
  • December 2021—Merry Christmas to me. I spent it in the hospital with double pneumonia caused by the chemo protocol.
  • 2022 to present—I've been keeping to myself, taking the oral targeted therapy and holding my own. Though I do have some cysts that are hanging around, they aren't growing and remain stable. So all is good.

Now back to why I'm celebrating this anniversary with the Tin Man. One of the things I've always loved about Baum's work is that those who helped Dorothy find her way had one thing they felt they lacked and wanted to see the wizard so they could gain it once again. The Lion wanted to be brave, the Scarecrow wanted brains, and the Tin Man wanted a heart. But as they journey forward, we see that the Lion IS brave, the Scarecrow IS smart, and the Tin Man had an abundance of love in the heart that in his eyes wasn't there.

For me, the Tin Man represents passion … finding the heart of your desires and keeping it alive. Even the times when he'd get rusted up (from crying over something) resonates with me. I have my passion in my writing work and focusing on that helps me get through my days. Yeah, some days are creaky, where I don't feel well, it hurts to move, and I have no spoons left. But when I write, it takes me away from all of that and keeps me plugging away toward a future when I hope someone will come up with an answer for the beast I live with day in and day out.

So while it may seem a bit odd to celebrate having cancer for 10 years, I'm celebrating the defeat of the Wicked Witch. One day, may she melt FOREVER.

Here's to the next 10 years because I plan to be here to celebrate it when it arrives.

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6 Comments on “10 Years of Living with Leukemia”

    1. Thanks!!!! I just take things one day at a time and keep myself busy. Having goals helps so much and I have way too much to get accomplished to stop now.

  1. Liana,
    Thank you. I never heard your entire story I agee, you are absolutely amazing and a gift to many teenagers.

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