Why am I writing this blog?

Euclid (Cleveland), Ohio, United States
Here I share the amazing spiritual journey I began on July 19, 2007. I received the diagnosis of a golf-ball-sized tumor on top of the left parietal lobe (motor functions) of my brain. I had severe symptoms all up and down the right side of my body and had received an MRI scan of my brain. In August 2007, I learned that my diagnosis was a Glioblastoma Multiforme (GBM). This is a common form of fast-growing brain cancer with a challenging prognosis. That's the external story about that moment in time. In the spiritual world I found (actually more like it found me) what I came to call the Fact-Based Spirit-Guided Path, and I began an amazing journey. After October of 2008, I lost the use of my right arm, and in early 2009, my cognitive abilities were struggling, and treatment options ended. My wife, Susanne, then began doing most of the blog postings, with my review and input whenever possible. I continued to apply the Fact-Based Spirit-Guided Path as the adventure continued. My soul then flew to the Kingdom of God on July 1, 2009. Thanks for your interest in my journey. Craig

Susanne's Perspective

During this entire journey, my wife, Susanne, had an entirely different kind of experience. Initially she added comments to some of my posts describing her experience of the moments I discussed and offerred perspectives on our relationship. In the latter stage of this journey, she is writing the blog, as I am no longer able to do so. I am truly delighted that she is doing so. Susanne and I work together as marriage educators/relationship coaches and she has written many books on preparing for and strengthening marriages so you can count on her comments to be insightful and poignant.

Saturday, May 31, 2008

Roller Coaster: May 23 to 30

We have felt like we were on an emotional roller coaster this week.
  •  We had a delightful weekend with Susanne’s mother, who headed back to Toronto On Wednesday, May 28.
  •  Wednesday afternoon, I had an MRI brain scan. It showed some significant changes since the one two months ago.
  •  That same afternoon, the surgeon reviewed the scans with us and called in the hematology-oncologist to review them, too. The surgeon’s opinion is that there are signs of tumor re-growing. YUCK! The oncologist was less pessimistic though.
  •  On Thursday, we reviewed the images with the radiology-oncologist, and his opinion is that the hole/cyst that was left after the tumor removal surgery last summer has simply collapsed, and the brain lobe has rearranged itself somewhat. The dead/unhealthy cells that were around the edge of the hole/cyst have now merged and changed shape. He doesn’t think there are signs of tumor re-growth present. YEAH!
  •  The radiology-oncologist was apologetic about us being put in the middle of the doctors’ differences of opinion. He indicated that normally the doctors confer together and decide on what information should be provided to the patient.
  •  The team will review the images at the Tumor Board inter-disciplinary team meeting next week and see if they can come to a unified conclusion. [We are, obviously, voting for the positive report! And, having one less hole in my head sounds like a good thing, right?!] .
  •  It is my fact-based spirit-guided opinion that the radiology-oncologist is more skilled at MRI interpretation and his interpretation is correct…no tumor re-growth evident.
  •  All three of the doctors concurred that there were signs of some further neurological impairment, particularly in my leg, and their recommendation to the neurologist is that I not return to driving at this time. YUCK!
  •  One of the outcomes of the brain moving around, or whatever is happening, is that I once again experienced some mild spasming/seizure activity, on Friday, in my right arm, right leg, and across my stomach muscles. Blessedly the doctors didn’t hospitalize me, but they have added a new anti-seizure drug to my array of pills (Dilantin). We’ll see how it works over the weekend, and then I see the seizure neurologist on Monday. Right now it is causing some dizziness and fatigue. So, my cane is back out for walking outside of the house.
  •  In the meantime, my bloodwork done on Wednesday shows many low counts, but it’s just healthy enough that the oncologist has approved chemo for next week. The doctors really want it to go forward.
  •  The spot on the top of my head continues to struggle with healing as well. It blistered up again last weekend and popped open. The MRI images almost look as if some of the cyst collapsing in the brain could have been part of the blistering and leaking on the surface. But, that’s speculation at the moment. We are still applying Bacitracin daily to ward off infection. And, there are no signs of infection present.
On the better news front, I was able to work 16 hours this week even with the medical trips and losing Monday to the Memorial Day holiday, we had dinner with my Aunt Jean on Friday, and Susanne finished a new book this week, Happy at Home, Happy at Work. We are continuing to be active in Toastmasters, in the community, and with friends and relatives. We are managing to do almost daily walks and frequent Chi Qong exercise routines, too.
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1 comment:

Anonymous said...

The rest of the story…

It was a delight having Mom here, especially while I was finishing up a book. She is good at proofreading! We got in some shopping and a couple of dinners out and just spent time together. She is a very easy houseguest, which I appreciate.

I’m excited to have a new book. This is the first one in a year, unusual for me. I’m glad Craig did well enough over the last few weeks that it was possible to get it done and off to the printer. Happy at Home, Happy at Work will be a new venture for our company. We are planning to sell the book to corporations instead of primarily through the retail market. It’s important to be raising my income to contribute more to our family coffers, and its our hope that this book is the start of that. I’ve been in training all spring to learn how. Part of the business model includes a portion of sales going to a charity, and we appreciate that.

And, the book went to the printer Wednesday morning and Craig’s next round of adventures began that afternoon! Whew! Tumor recurrence with Glioblastoma is very serious. There are some experimental measures that can fight it off, but it’s a tough road. We very much hope that the chemo has more time to work on preventing a recurrence. We are learning the value of second opinions during these experiences, though! But, such emotional wrenching from very low back up to hope again! By Thursday evening after Toastmasters, we just crashed into bed.

With Craig’s encouragement, I’ve written a list of all the issues, questions, and outstanding items in our life that need consultation and action. It will allow us to discuss family, home, and end of life issues when we are calm and not in a crisis moment. It was hard to write the list, but good to have it out of my head! The cancer support groups have helped us get to the point where discussing these issues can happen without it meaning that we are giving up the fight against the disease.

I was very grateful that the seizure activity was mild and did not mean hours in the ER. Not our favorite place to be! But, it’s also hard to have Craig on more medicine. While it helps him, it also impairs his functioning. So, now we wait to see what the scan at the end of June shows and hope it’s clearer to the doctors at that point what is going on in Craig’s brain. In the meantime, they are encouraging living as fully as possible, which is what we are trying our best to do.

May 31, 2008 at 11:41 AM

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