The Education of a Caregiver: An Introduction to Caregiving

by Nancy Hoey, caregiver on February 3, 2011

Editor’s Note: The following blog is an ongoing series, titled “The Education of a Caregiver,” written by Nancy Hoey, caregiver to Mike Hoey, a Stage IV metastatic Kidney Cancer survivor.

An Introduction to Caregiving

Back in late 2003, Mike’s routine yearly chest x-ray showed a “spot” that hadn’t been there before.  Immediately, our minds went to places it had never gone before – at first “good” places (or the lesser of two evils) in the hopes that somehow this “spot” is going to be good news, not bad.  We instantly thought of (grabbed onto really) “Valley Fever” which is an ailment somewhat limited to California’s San Joaquin Valley.  And it is a disease that affects people in farming and similar occupations more than someone who works in an office.  Since Mike taught Agriculture at the local community college and he spent some time working with commodities like fruit trees, grapes and other agricultural type products, we could see (we wanted to see) a very real possibility that this was going to be Valley Fever. Valley Fever isn’t fun but it’s a walk in the park compared to renal cell that has metastasized in the lungs.

As this new journey began to unfold in front of us (and definitely not a journey we wanted to take) and as we struggled to separate the good choices from the bad choices, Mike began going through a multitude of medical exams, scans, x-rays, blood tests, stress tests, biopsies, etc.; and I began what seemed like an endless search of the internet in the hopes that someone out there had walked this walk before and had recorded it for those of us about to follow.  At the time – early 2004 – I don’t think too many people were into “blogging” – at least not like it is done today.  I kept a daily journal back then of what we were doing, what we were experiencing and feeling in the hopes that it would help me get through the day-to-day stuff.  I also wanted this to be a diary for our children to read someday – especially if we didn’t get our happily ever after – I wanted our adult daughter and son to know how hard their dad fought to stay with us and how much he loved them.

Mike was very preoccupied with all of the procedures that he had to endure, so a lot of the questions that needed to be answered, the information that needed to be gathered and sorted and organized, fell to me to handle.

At that time, I was still very unsophisticated and untrained in using the computer and getting the most out of what it had to offer us.   I spent endless hours trying to find out if there was something better than the HD IL-2 that was being offered. Via this new super highway of information, I “went” to Canada, to Europe, to Asia and to South America in the hopes I could find a researcher or foundation that was on the brink of making history with a new formula. Along the way, I accidentally stumbled across what would now definitely qualify as a “Blog” kept by a man named Tom Brazaitis.  At that time, Mr. Brazaitis was also a popular journalist for a newspaper in the Midwest and after he was diagnosed with kidney cancer in 2000, he invited “us” to come along and share his ride.  It wasn’t an easy blog for me to read because we were living parallel lives at the time.  Tom was an excellent writer who chronicled his disease with intelligence and wit.  He was also very articulate and very well informed.  Tom passed away in 2004 and his “blog”, unfortunately, went with him a short time later.

As I read and kept up with the entries that Tom was making in his journal about kidney cancer, I realized that we were mirroring the places and things that Tom had experienced.  His storytelling was brutally honest and he didn’t try to sugar coat anything.  He told it just like it was and at times it was very hard to read.  In fact, Mike never read any of what Tom wrote.  He has let me do all of the gathering and then I would read or tell him what I thought he can handle.

2 Responses to “The Education of a Caregiver: An Introduction to Caregiving”

  1. March 20, 2011 at 3:18 pm, Education of a Caregiver: Kidney Cancer, IL-2 and Facing the Monster Together | ACKC said:

    […] Installment Two: An Introduction to Caregiving […]

    Reply

  2. April 17, 2011 at 3:28 am, Louise Mooney said:

    Thank you for writing,we too have been at this journey for a bit, just over 9yrs since my husband’s kidney was taken out but we had it easier than you, I so respect the work you have done for your husband and now the work for all of us as we try to support our loved one.

    The difference of starting this journey at 2003, our doctor was the advocate that we should be on close watch, first every 6 mo then growths show up, taking out his adrenal gland at year 6 , and subsequent growths over the coming years, we called it the wackaball approach to fighting cancer.

    Fast forward, we are on week one of sutent, after 3 years of wackaball, Now we have had too many returns to the stomach so we have started the next chapter with the chemo pills.

    Are there blogs that stand out to help with the side effects? They can be very frightening. Thank you for sharing your wisdom.

    Reply

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