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, January 5, 2008

Week 1 of Second Phase of Treatment: December 30 to January 5

The 5 days in a row of a higher dose chemotherapy began on Monday the 31st. In the previous post I was commenting about the importance of not getting complacent as I move into this next phase of treatment. That was very true. As the week went on, my fatigue level increased, calling for more frequent naps, and my nausea increased and appetite decreased, limiting my ability to eat some foods and decreasing the quantity I could be comfortable with.

In parallel with this has been increasing discomfort/pain around one end of the incision on my head (from July/August surgeries). We saw Dr. Sloan, the surgeon, on Thursday. He examined it, and offered his view that there was a 99% chance all was fine. However, at our insistence, he moved up the date of the next MRI scan from February 4 to January 8th. The nurse also requested some additional blood work, which showed improved cell counts over the week before and nothing of serious concern. However, the swollen spot on my head changed rapidly on Friday, with a blister forming over the area by evening. By this morning, it had burst. As Susanne was cleaning it up, she observed pus coming out. We contacted the doctor and were advised to come down to the ER to be seen. Dr. Sloan’s resident-on-call indicated that it looked as if an abscess had formed around a suture (stitch) that was not smoothly dissolving from the August surgery. He was confident there did not seem to be any leaking of fluid from the brain cavity. I see it as my hard head not letting go of the sutures, as it should...need to practice some more detachment like Susanne! He prescribed antibiotics and indicated that I should Dr. Sloan on Wednesday after the MRI on Tuesday..

Also going on this week, is the deteriorating condition of my dear friend Stephanie Dornbrook. On Tuesday, her daughter, Mara, sent the following message:.

“My mother's health has been steadily decreasing over the past days. I would like to request prayers for her, as her soul prepares for its journey to the next world. I would also like to request No visits, No food, No phone calls as our family spends our moments privately with our mother. Thank you for all of your love, support and prayers. With great affection, Mara Dornbrook Fojas”

3 comments:

Anonymous said...

The rest of the story….

It’s been a calm, peaceful week. I’m still working on settling down the antibodies that are still actively attacking my left eye, but the auto-immune activity is decreasing.

I looked at the 2008 work goals I set and decided I needed to finish a project I began a year ago: reorganizing our office area to better support the current work. It has been both positive physical effort and an act of self-discipline to reorganize the filing system, box up old materials, and handle all the piles on my office floor and desktop! As I see the progress, I’m feeling more empowered with moving forward. And, I’m glad to have unearthed a few missing items!

Running in parallel with taking control of my office area has been sorting out what I have control over with Craig’s health this week and what I don’t. Changing his diet is improving his blood counts…although he continues to growse about “green gook”. The chemo this week affected what food he could tolerate and the quantity he could eat though, so each meal was an adventure in adjustment. It helped that he had minimal nausea.

Every few hours all week I checked what was happening with Craig’s head. I am glad the surgeon was willing to schedule an MRI to check more deeply what is occurring. When the blister formed, I began to imagine bad scenarios… I laid out a sterile gauze pad in case it burst. Then, I managed to pray and sleep well, trusting that we would deal with whatever occurred. It ended up bursting while we both slept unaware! While it was difficult to spend the morning at the emergency room, I’m also relieved that it appears potentially less serious than we thought it might be. A reminder once again how important it is to wait for the facts before responding.

I spent part of the afternoon doing price comparison among pharmacies, as our health insurance has changed and we will be paying cash for prescriptions until our deductible is met. I found out in the process just how expensive chemo is! For 15 pills (Craig’s dose for a week) the cost ranged from $2300 to $2700! Between that and the ER trip this morning, our deductible looks like it will be met by February!

I’m going back and forth between praying for Stephanie and her family and trying to pretend it’s not happening. Then I imagine it’s us…and go back into denial.

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Susan said...

Craig, thanks for your comment on my blog. Hopefully in the near future we will all understand the relationship of nutrition/supplements to our healing. It seems best to just choose a path and while we're on it, try not to see too many other choices. For me, this causes great stress, which I am trying to avoid ... but something deep inside me says: you are what you eat. Ah, I need to practice detachment too.
My prayers for you both,
susan