Brain cancer: Coping with a Glioblastoma diagnosis for my dear old dad.

At the beginning of July, my dad was diagnosed with a brain tumor. Specifically,  Glioblastoma (GBM),  which is an aggressive, terminal form of brain cancer.

Ugh.

In an effort to get him the best treatment, we've moved both my parents from Indiana to Virginia to live with us while he is treated at Johns Hopkins. My dad has been my mom's caregiver for the past three years, so that responsibility,  along with my dad's care, passes to my sister and me. My sister lives within a few miles of me, so between our two families, we will tackle this together.

We've spent the last two months knee deep in consultations, appointments,  and procedures.  On August 6th, my dad had brain surgery to remove as much of the tumor as possible, which, unfortunately, was followed by post-surgery complications. So instead of coming home in 3 days as expected, he was in the hospital for almost 2 weeks, followed by an unplanned 10-day stint in in-patient rehab. He was discharged last Tuesday, and came home to live with me and my family,

The deficits left behind, caused by the tumor, hemorrhaging, surgery, and post surgery complications, are significant.  He's having to relearn a lot, but he made a ton of progress in rehab. He still needs 24/7 care at present, due to mobility, vision, and cognitive impairments,  but I am happy to report that the first few days home, post surgery and rehab, have been successful. As you can imagine,  we have learned to take things one day at a time.

While the diagnosis has turned our whole world upside down, we are thankful to be spending time together. He is still "Dad", and is strong, can communicate pretty well, and is itching to begin at-home Physical, Occupational,  and Speech therapy. "Itching" may be a bit strong, but he is definitely interested in getting better!

I have learned so much since July - and have developed a new level of understanding and compassion for those dealing with cancer - as well as caregivers of any kind. I now fully appreciate the devotion and selflessness my dad demonstrated over the past 3 years, caring  for my mom. He set a wonderful example,  and I only strive to follow his lead.

Managing my own chronic illness while caregiving has brought its own challenges, and I am learning new strategies daily. My experience with lupus up to this point has been extremely helpful in tackling the world of cancer (think steroid side-effects, medication management, and medical jargon, just to name a few), so I try to focus on applying that knowledge to help my dad navigate his illness.  Finding purpose seems to be a key element for all involved. It's certainly much easier than trying to alter the diagnosis.

While I have no intention of hijacking this lupus blog and turning it into Cancer Caregiving 101, I am finding an extraordinary amount of crossover and relevancy between the two experiences that I'd love to share. I hope you'll come along for the ride. 

Look for upcoming posts from this caregiving Lupus chick soon. Patience and prayer have been essential, just as they were during those early days with lupus. Some things never change,  right?


Comments

Anonymous said…
I am so sorry your father and your family has to go through this trial. Sending some prayers your way.
Sara Gorman said…
Thank you so much. Prayers much appreciated!

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