April 2018

Wednesday, May 21, 2014

Ten Years of Aprils--guest blogger

I'm in an online support group for adults who speak English with ependymomas and those in our lives. Recently, Jeremy shared this powerful post, and he said I could share it with you. (The link at the bottom is to Pearl Jam's performance of "Just Breathe." It's lovely, too.) Here's Jeremy's post:


O Fortuna!
It has been ten years. I do not participate often, but I am always watching this list. 

At 19, I was diagnosed; March 23, 2005 with a three inch ependymoma spanning L2-L3 [in his spine] only caught due to symptoms caused by a large cyst constricting nerve endings. I thought I had an apendicitis and went to the ER with severe lower abdominal pain radiating into the legs. They identified gallstones and thought I might be faking it. I had my gallbladder removed (gallstones) and the surgeon, who doubted a connection to the symptoms, sent me for an MRI that identified the ependymoma. I had an excellent neurosurgeon (Martin Lazar at Medical City Dallas) that performed surgery March 25, 2005 followed by 4 days in the ICU and 5 days inpatient care. My birthday is April 9. I have developed a very ambivalent stance on my birth month. It represents both the celebration of my life and stands as a reminder of how finite and fragile that life truly is. Due to the timing, my birthday is a solemn indicator that it is time for my next MRI.

 A scan on April 7, 2007 revealed a 4mm  “area of enhancement” at T3 and and an additional two 2-3mm tumors at L4-L5. This lead to eight months of radiation and one and a half years of Temodar. Doing the math; this year was MRI 31 (full spine and brain ~4hrs in a machine ea.). Thankfully, there have been no changes since the scans pre-treatment 2007. I have two herniated disks (overdoing it after a laminectomy) and three identified tumors. The tumor at T3 was not actually identified until after treatment and was not included in the irradiated area. After all of this, the only thing I can complain about is mild, persistent back pain and lack of surface sensation on a large, and not insignificant, part of my inner right thigh. 

During this spring, April 23, 2010, my mother, who was my only parent and caregiver, was diagnosed with a Cholangiocarcinoma (cancer of the epithelial cells of the bile ducts leading to the liver) that was caught after spreading to the full liver and surrounding lymph nodes. She did well handling aggressive chemo and radiation of associated bone cancer until April 28, 2011 when I checked her into the ER with what was later identified as a staph infection in the circulatory system (she had been on injectable blood thinners for a pulmonary embolism which is the most likely culprit.) She passed away peacefully at home surrounded by loved ones June 10, 2011, three days after being sent home on hospice.

This April ~ 25th. My 89 year old grandfather was admitted with edema caused by kidney malfunction/failure. I have been with him constantly as both a loved one and experienced patient advocate in the weeks since.

To all patients and care givers,

You are not alone.

It is both a burden and a far too heavy badge of courage and fortitude, reserved for a select few that experience what we have. The only way out is through, how ever that plays out, and who ever your are at the end; Know that you are loved and know that we are here with you.

“Adapt yourself to the things among which your lot has been cast,
And love sincerely the fellow creatures with whom destiny has ordained that you shall live”
— Marcus Aurelius

Jeremy at 29yo,
ten years and counting


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