Reflections on the First Anniversary of Diagnosis/Surgery: July 20 to 27

It’s now, amazingly, been one year since my tumor-removal surgery, so I’m reflecting on this period of time.

When I began the blog, I described what I was experiencing as an “amazing spiritual journey” that I’d “come to call the Fact-Based Spirit-Guided Path.”

• Does this still feel as true now as it did a year ago? YES. My understandings around the Fact-Based Spirit-Guided Path have grown, developed, and been modified to a certain extent. But, my core feeling is that July 19, 2007 at about 2:00 p.m., when I got the diagnosis, is a moment in time that I will forever recognize as a spiritual transformation of my very being.
• How has my thinking about this Path been modified? A key piece of the modification has been in realizing how difficult it is for many to grasp and apply the “Fact-Based” portion of the Path. Maybe it’s the scientist/engineer in me that allowed me to immediately grasp the importance of focusing on the fact of the diagnosis without descending into severe anxiety. My college degree is Physics and my work career of the last 25 years has been in R&D, Product Management, and technical sales, so I’m pretty darned good at sorting out the essential information. However, I have also struggled at times with anxiety when the facts have been unclear due to limitations in medical equipment or misinformation.
• How did the Spiritual Journey unfold from July 19? The first was my being Spirit-Guided to calmly prepare for the hospital stay and leave home with the picture of my wife and grandkids and the “Three Tools of Healing” poster. It felt Spirit-Guided to me to make lots of personal connections with friends and family prior to surgery and then to recover from the tumor removal with a high level of tranquility, yet fully determined to walk normally again. It was almost 4 weeks after the surgery that we got the official pathology report. By that time, I was fully ramped down from the high level of steroids that they put me on pre-surgery to reduce brain swelling and was able to continue on the Path. My conviction of being a participant vs a passenger in the surgery and treatment have strengthened throughout the process.
• What was next and how did I apply the Path? The researching phase was next, which began with a message out to friends and family seeking well-researched conventional medicine treatments and well-researched alternative or complimentary medicine and healing methods. I wanted the means of maintaining personal wellbeing and the strength of the body’s immune system while undergoing the conventional medicine option. I was clear that I wanted to avoid receiving alternative approaches that were only anecdotally-supported (for example, this worked for someone…). These, to me, bordered on pseudo-science (no research demonstrating effectiveness).This was a very powerful distinction to have articulated and I have continued to find it useful.

As part of the researching, we traveled to the Block Integrative Cancer Care Center in Chicago in September 2007 and came home loaded with both medical and complimentary information and recommendations. Susanne and I consulted to determine what our plan would actually be, and I felt Spirit-Guided in selecting what recommendations to use or not.

• Where did I go from there? In large part motivated by the book “Love, Medicine, and Miracles”, I gained further affirmation of the power of visualization work and the importance of being an active participant in the treatment process. I created specific plans around each of the 3 phases of treatment: 1) Six weeks of radiation/chemotherapy, 2) A six-week rest break, and 3) Long-term chemotherapy. For each of these phases, I worked with a hypnotherapist, who created sessions that I tape recorded and listen to frequently, and which reinforce the current plan.

• Do I still have thoughts/plans of setting up a means of teaching people about how to apply this Path in their lives? I do. I initially thought it would be quite easy to accomplish but, now I know it’s going to take a fair amount of work to structure the program, and I may need a collaborator. I’ve put this on hold to focus finishing my treatment and getting on with life.

So the journey continues!!!

During this week, there were several wonderful opportunities to share my journey:

1. Deb Wood, the reporter for the U.S. Bahá’í Website that did an article on my journey in November, interviewed me again and posted an update.

2. Susanne and I were interviewed by Ted Henry, a local TV news anchor, for a 2.5-minute segment about spirituality and cancer. It will air on the Friday 6 p.m. news sometime soon.

3. We had dinner with a couple who shared with us their 5-year journey responding to a glioblastoma tumor the husband experienced.

4. My long-time friend Chris Ruhe came to town with his voice and guitar, along with John and Joe Rafalak as drummer and saxophonist, and did a house concert at our place on Friday, July 25. Long-time friend Dan Twaddell, a jazz musician living and studying in Columbus, also came and played saxaphone and flute. It was great to have our home filled with friends, music, and good food!

Annnnnnd, there were no medical incidents or seizure activity for the entire week!!!! YEAH! My eldest daughter, Michelle, and her husband, Hooman, also celebrated their 10^th wedding anniversary!

Peaceful Week: July 13 to July 19

Medically it was relatively peaceful week. - I started the week with a Holistic Healing/Acupuncture session, which was an excellent way to rebalance after the chemotherapy drugs and seizures from the previous week. - I only had one mild seizure episode and that was at the end of a day where I had probably pushed a little too hard at work. The management of my company asked me to give a presentation twice during the day to all the employees about the Market Development work I am doing. Part of the reason for this was that they wanted the rest of the employees to see that I was back and actively involved. I was very pleased to do the presentations, as I enjoy that, but it was draining. I skipped Toastmasters that night and stayed home to rest and worked from home the next day. The Tuesday night support group at the Gathering Place was pretty intense. Because a couple of the participants were being confronted with it, there was extensive discussion about quality of life versus continuing to take treatments that were not working and causing pain and other side effects. It became clear to me that many of the males, and the group is running about 50% or more male, are unfamiliar with doing anything besides what the doctors prescribe and toughing it out otherwise. Most of the females clearly have other resources upon which they are drawing. I reached out by telephone to one of the guys who was in particular distress. I shared, more fully than I had so far, about the aspects of the complementary treatment approaches I’ve been using and followed up with this email message to everyone in the group: “I got a sense last night that providing you with some of the details around the complementary treatments I am doing might be of interest: - As soon as I got the diagnosis that the removed tumor (all visible in one piece YEAH) was a Glioblastoma Grade IV we launched into research mode. - I quickly became aware of the Block Integrative Cancer Care center Block Integrative Cancer Care Center in Chicago. We contacted them for the first available appointment. - I went there with 2 objectives: Second opinion on what my local docs were recommending (they concurred) Recommendations on complementary aspects (we got a whole lot of stuff) - They also prescribed a range of vitamins and supplements. - I have found it useful to have the dosages and usefulness or not-usefulness evaluated periodically by a holistic healer that uses a muscle testing technique to evaluate both the individual and entire complement of drugs and supplements. I do NOT modify the prescription drug dosages based on this but do adjust the vitamins and supplements. This is the current regimen. - I had immediately shifted into strong prayer, meditation, and visualization prior to the surgery and honestly felt as a participant in the surgery. I kept it going and found the book Love, Medicine and Miracles by Bernie Seigel to be very informative. I would be more than happy to talk about this with anyone that feels the need for more. Blessings on all your journeys. See you next week. Craig” With being more public about the holistic healing/acupuncture stuff I’m doing I got to thinking a fair amount about why I see validity in this. What I’ve come to as a response to the question “How can you believe this stuff” is: 1. I have a degree in Physics and work experience in engineering. 2. The engineer in me obviously wants to measure, touch, feel, etc. the truth. 3. The physicist in me recognizes that, as we explore deeper and deeper into the sub-atomic realm, things shift from being material to energy as the basic building blocks of what we experience, at the macro-level as material. 4. If we build an understanding of the human body back up from there, the material aspects that western medical science measures and analyzes emerges but so does space for energy-based aspects that western medical science does not have the tools, yet, to measure….many eastern medical practices have been tapping into this for centuries. 5. The medical doctors keep commenting on how strong and healthy I am, and we clearly see the response in my health and bloodwork from the nutritional intake and supplements I’m doing. We also had a delightful visit with Susanne’s brother and his wife, who drove down from Toronto. Friends Stephanie and Steve came for lunch on Saturday and brought a picnic lunch, so that was fun, too.

Titanium Antenna!!: July 5 to July 12

The annoying hard bump on my scalp, that we’ve been reporting to the Neurosurgeon since the January wound infection surgery, finally got diagnosed. I’d been telling him that it felt like there was a pebble underneath my scalp. Early this week, it broke through the scalp and was clearly a piece of metal. He took one look at it and immediately knew what it was.

When I had the initial surgery in July 2007 they, obviously, had to cut a piece of the skull bone out so that they could remove the tumor. To reattach the skull bone piece to the rest of the skull, they use tabs and small screws that are made of the metal Titanium, because it is invisible on MRI scans.

Apparently when they did the surgery in January, they were probing around under the scalp to remove infection and apparently the probe got caught on the end of one of the tabs and bent it upwards. What I have now is a 1/4” high piece of Titanium protruding from my scalp. So, Susanne and I have been joking about it being an antenna and wondering what signals I’ll pick up. Not only that, this antenna is attached to what I’ve come to think of as the trapdoor for my 7th or head Chakra. How cool is that!

However, the downside is that at some point it will need to be surgically corrected. The surgeon said it may wait until surgery is required for some other reason or, once I’m through with chemo and my blood counts have recovered, I’ll have a further operation to fix the problem. It’s actually kind of annoying when I’m washing or combing my hair, and my rings easily catch on it. The surgeon said he’s never had this problem occur before, and was somewhat embarrassed and apologetic. I like being unique, but maybe not when it causes further surgery?! We also saw the radiology-oncologist the same day, who simply reported that he’s not seeing anything going on to be concerned about at the moment.

During or just after Round 5 of the chemo (July 7 to 11) I had two mild-seizure events. Each time, I took a single dose of the prescribed Clonazepam and the activity subsided quickly. The one episode was Tuesday, July 8, so I was unable to work much that day. The other was Saturday afternoon July 12, shortly after I’d taken a long hot bath in Dead Sea Salts. Actually, the circumstances of both of these felt to me to be of a releasing nature not of a stress-induced nature. However, each one that happens makes the point to me that driving is postponed, once again. It’s very frustrating! My sister has borrowed my truck for the summer, but I’d love to have it back and be behind the wheel!

In addition to the medical stuff, we:

1. Had a delightful boat and swimming outing on Lake Erie with our friends Rebecca Li and David Stickler on Sunday, July 6th.
2. Attended a wonderful but intense session of the Spirituality Group at the Gathering Place. The focus was on using chanting to spiritually focus and lower stress. So far, on weeks when we have met with this monthly group on a Thursday we have skipped our normal support groups on Tuesday. We both felt the need to be there this time…

Major Lesson Learned: June 23 to July 4

On June 23 and 24, I had 3 episodes of the right-side spasming (mild seizures). The Neurologist prescribed Clonazepam that I am to use on a short-term, as needed basis. I took 3 doses and then stopped. I was too tired to work much on both the 24th and 25th. If I take a dose as I begin to feel an episode coming on, I may only need 1 dose. I have only had 1 instance of that occurring, since, on July 1st.

Because of the roller coaster ride in May, which left some doubt as to whether the tumor might be recurring, I had another MRI scan done on June 26. The oncologist reviewed it with us the same day, because I was to start the next round of chemo the following week. Well, he looked at it and saw what he interpreted as being evidence of tumor re-growth (YUCK). He 1) postponed the next round of chemo as he and the other doctors would need to consider shifting to a more aggressive treatment or a clinical trial, and 2) indicated that a full review of the imaging would be completed by the following Wednesday at the weekly Tumor Board meeting. He promised to call as soon as the meeting was over. This was really pretty depressing to us and to the few people we shared the information with. I was also angry that this was happening, as I have remained convinced that the cancer was all removed last summer. Susanne and I left his office and stopped by the lakeshore to process our emotions and concerns. We decided not to do a broadcast message or blog posting, however, until after the Wednesday meeting so we could share the treatment options along with the expected bad news.

You can imagine the elation (and consternation!) we experienced when the doctor called on Wednesday and told us there had been an error made with the MRI…too much contrast was injected (I think of it as an over-exposed negative) which caused formations that weren’t tumor to look like tumor. It looked much worse than last month’s scan. So, the end result was good news, but it was another emotional roller-coaster ride….yikes!

We have now requested, for subsequent MRIs, that they wait to give us results until all the doctors have reviewed the images and have a consensus agreement. The oncologist agreed that this would be a good procedure to follow for all patients. Given Susanne’s strong interest in identifying an issue and accomplishing systemic change to prevent the issue from reoccurring, she was delighted with his willingness to consider this change.

Due to the brain swelling the doctors keep seeing on my MRI’s and the decrease in right side functioning I’m experiencing, as well as the increased seizure activity, the oncologist has put me back on steroids. While we don’t like some of the side effects, I am already noticing an increase in mobility. And, I do like the side effect of increased energy! I’m also now scheduled to begin round 5 of the chemo on July 7-11.

In the midst of this roller coaster ride, we proceeded with our plans to travel to Dayton for our granddaughter Karida’s 4th Birthday party. We obviously had to share the news with the gathered family but stressed that we would have final word on Wednesday. We put that behind us as best we could and had a wonderful time:

1. Karida spent 1 night and much of the next day with us at our hotel.

2. Finally got a picture of Michelle, Karida, and, Hooman..

3. Also got a picture of my son, David with both Karida and his son Aidan

4. Here’s some other photos of the party.

It just so happened that Michelle was planning to drive to Cleveland anyway on Wednesday to do a car swap with David. She and I had a delightful lunch together and she stayed for the doctor call. The three of us went out for a celebration dinner before she headed home.

On Monday evening, June 30, Susanne and I attended a special presentation at The Gathering Place focused on brain tumors. The presenters were from The Cleveland Clinic. We learned a lot about why it is so complex to treat these tumors. We were also encouraged by meeting someone who is a 5-year survivor of glioblastoma. He and his wife both looked very well!