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, September 1, 2007

Back in the Hospital

Unfortunately by Monday morning the incision was looking no better and I was having constant headaches so, at the recommendation of our GP, we headed back to the Emergency Room Monday morning…rats!!! Once again we learned that being a patient means having patience…nine hours there before they got me into a room on the neurological ward, a lot of it without food or medicine. Actually, it was a bit strange to be set up in one of the rooms on the ward that my son stayed in back in March for his tumor removal.

I had noted in my post for August 24, “I promised Susanne that if I was feeling sad or depressed or had any other negative emotions that I would share them with her and not just deny them. One of the concerns she’s expressed about the fact-based spirit-guided path is that, from her perspective, it appears to be an avoidance of any emotions besides happiness.” Well she got to hear me being not so happy and accepting of what was going on…particularly fasting for 24 hours and then discomfort and pain after the surgery, since they tightened my scalp up even more. The first approach of pain medications was not working either. I was also pretty straightforward with most of the folks that called me: I was grumpy! It was very different going through surgery and recovery without steroids influencing the experience too. Wednesday night they changed the pain-meds so by Thursday morning I was feeling better and was discharged Thursday afternoon.

It was interesting to note that, for this follow-up surgery they shaved a larger area and it’s now very clear that the letter “C” for “Craig” is carved on my head and will be the shape of the scar that is left. You may not want to look at this picture if the sight of blood makes you queasy. In this second surgery, they had to pull my scalp in even tighter so the pain is more present than from the initial surgery. Of course, I’m also not on steroids. After the initial surgery, I needed only an occasional Tylenol. This time, I need real pain medication. The first one they started me on didn’t work so they had to switch to an alternative (Darviset). I’m continuing to take it, as needed, and trying to keep the intervals as long as possible.

There were several things that got cancelled due to this further hospital adventure. By the way, I’ve had people comment on my use of the word adventure vs. adversity or ordeal. What I’m seeing is that the choice of the word used to describe something like this contributes to how it occurs. I am consciously choosing to call the further hospital stay and the further treatments called for by the pathology report “further adventures” instead of more adversity or ordeal. And…it was a challenge when this adventure cancelled these plans for the week:

  1. I was to participate in a Euclid City Diversity Team meeting on Tuesday morning.
  2. Our first cancer support group sessions for patients and family members at The Gathering Place were to happen on Tuesday evening.
  3. I had placed a call to a hot air balloon ride provider over the weekend for us to be doing a dawn ride on Thursday or Friday.
  4. We were to have a devotional prayer meeting at our home Wednesday evening where friends were coming to pray with us for healing.
  5. I was to participate in a Toastmaster’s contest on Thursday.
  6. My first “Three Tools of Healing” dramatic presentation was to be Friday, August 31 at Barbara Baumgartner’s home. I was really looking forward to this and had already purchased a wireless microphone to plug into her sound system. Up until Thursday morning, when it became clear to us that the IV infusions every 12 hours were going to be time consuming, we were still considering this a go. The first “Three Tools of Healing” dramatic presentation is now going to be Saturday, September 8 at Emma Jackson’s.
  7. I had to miss three of my outpatient rehabilitation sessions when they were just getting fully going.

I was very disappointed to miss these activities. It is important to me to be leading as normal a life as I can while I’m healing.

2 comments:

Anonymous said...

The rest of the story…

My role in the hospital and medical world right now is very much one of simply being Craig’s wife. I have little identity beyond that. In the emergency room, I make sure that communications about him to medical personnel are complete, as Craig sometimes forgets a few of the details. I wander out of the room once in awhile to make sure someone is paying attention to what’s next for him (it was very busy in there). I ask the questions…are you sure he can’t have any food? Could he have something for pain? Why isn’t he getting antibiotics? I try to leave occasionally to get a meal and take a break…of course that’s always when the resident or doctor shows up!

On the ward, again I’m support team…working with the social worker, nurse, and doctors to make sure all is going smoothly. I ask the key questions – are you sure he should have a pneumonia shot now when he’s just had a fever and is about to go home? (After they checked…the answer was no…and it had been inches from going into his arm.)

In all of these activities, I’ve become Mrs. Farnsworth. As part of my divorce 10 years ago I chose a new name for myself. I researched last names and chose Alexander (It means “helper of mankind” and matches the first member of the Baha’i Faith in Hawaii, Agnes Alexander. I was impressed with her ability to live her life in alignment with God’s will.) I started using my full first name (Susanne) instead of the nickname “Sue”. I also chose a middle name, which I’d never had: Mariella. I then spent a year changing my name throughout all aspects of my life and setting myself up as a freelance writer with this new name as my byline. When Craig and I married, all of this was just complete, so we agreed I wouldn’t change my name to Farnsworth after marrying. In this current circumstance it’s simpler and fine for me to answer to “Mrs. Farnsworth,” and it connects me to Craig, which is a good thing. And…it also feels a little like who I am is becoming invisible at times.

We’ve been talking about the blessings from this hospital revisit and surgery. Craig wasn’t seeing any! It’s giving us the time to breathe and actually look sensibly at all the treatment options there are. I think it was good for Craig to experience a more usual post-surgical recovery experience so he had that as a balanced perspective with the first time. That will help him as he talks about the experience and also when he evaluates treatment options and their potential outcomes. It’s helping him understand better what he needs to do to keep areas like this clean and free of infection. And, it was full of more reminders to practice detachment from how we think things should go. I suspect that will be useful going forward. The Baha’i wedding vow that each of us said is, “We will all, verily, abide by the Will of God.” I keep repeating it to myself.

Anonymous said...

Dear Craig,

I don't believe I've ever known anyone before who was personally monogrammed other than by tattoos. Dare to be different!

Seriously, I hope you're feeling better WITHOUT headaches. Stay strong.

Lynne