backwards update.

Note from the author: I have been working on this blogpost draft off and on throughout November and December. I finally just said to myself, I need to publish this! As you will read, November was a whirlwind, and December and all of the holidays was a fun but busy time. If you want the short and sweet of this update in a sentence: After finding 3 new cancerous spots on my spin, my doctor wanted me to start chemotherapy immediately with radiation to shortly follow.

Thank you always for reading and praying for me!

November was a flash-flood of emotions, events, time. My writer water-words hope to hold and collect some of it in this glass mason jar of my blog so that you can see my heart, my hopes.

My parents, Josh and I went to the Cleveland Clinic late October. I now was off the clinical trial of Cabozantinib and in need of new treatment options. Nick, my oncologist, suggested we go to try to plea with Dr. A regarding a clinical trial and to get more insight and opinions of treatment options. Dr. A is a world-known Ewing’s Sarcoma expert and yet still a sweet older gentleman with a heart for patients. I arrived anxious and left hopeful. I was so impressed by the amount of care and concern the Cleveland Clinic had for me even though I wasn’t their patient. Josh and I left with a PowerPoint of scan images, medical journals, personalized notes regarding my treatment options all on a single flashdrive. A flashdrive of hope, of new found confidence, of plans and ideas. We may not have gotten onto the clinical trial like we had hoped, but I know I left feeling more optimistic and confident that there was more to do, there were more weapons and reasons to continue to fight.

Who knew we would be entering in battle again so soon? The following week, scans revealed that I needed to start treatment again, now. Three new tumorous spots appeared on my spine: one on my neck, one near my ribs, and another the tailbone. My Orion’s belt of tumors instead of stars. The Orion’s belt I look for in the winter sky, clear and bright, the hunter fighting unseen beasts in the sky. I too am fighting unseen beasts, but within me. Friday of that same week, my hunter-self is called to action. The need to fight again is now; get a new IV line in me and start a new chemotherapy all over again. So soon, so quickly, only a brief period of a few weeks rest between clinical trial and chemo.

At the recommendation of the Cleveland Clinic, I started Doxil, Vincristine and Zometa. Once again, all alien and foreign sounding bodies, or names of places in a teen dystopian novel.

I became a Zometa zombie, shuffling around the house, shivering with fevers and flu-like aches. And with a fever, comes a mandatory ER visit, an insistent plea by the doctors and nurses in order to make sure that my PICC line isn’t inflected. And that ER visit typically turns into an overnight hospital stay (which it did) and Josh having to calm me down around nurses and doctors with my medical frustrations. I am definitely not good at being a patient patient.

 

3 thoughts on “backwards update.

  1. I am holding you, Josh, and the rest of your steadfast family in my thoughts and prayers as you continue your courageous work fighting this beast. I love you 😘.

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