Start of Phase 2 of Treatment

I am now beginning a concentrated high dose of oral chemotherapy (4 week cycle of 5 days taking the pills and 23 days with none for 6 months). My PLAN during this time is:

Prayer, meditation and visualization to::

1. Welcome the chemotherapy as a healing agent.:

2. Strengthen my immune system and support the white blood cells in continuing to surround and remove any remaining pieces of the cancerous cells and tumor.:

3. Encourage the red blood cell levels to increase and normalize.:

4. Keep my platelets at a healthy functioning level.:

5. Continue to strengthen all aspects of my mental, physical, emotional, and spiritual wellbeing.:

6. Claim my sacred self and worthiness to heal and live a healthy, purposeful life.:

7. Heal the nerve cells and related tissue throughout my body to minimize and eliminate neuropathy.:

8. Lessen fatigue and increase my ability to work more hours for my employer.:

Continue to eat nutritionally appropriate food, take helpful supplements, and participate in regular exercise to keep me strong and healthy.:

Hold as my goal effective and efficient healing with long-term survival and excellent quality of life.:

As I contemplate the initiation of this phase it occurs to me, with a reminder from Susanne, that it is not wise for me to get complacent about treatment because it has gone relatively easily so far. Some factors have contributed to this complacency::

1. The MRI scans continue to show no visible tumor growth.:

2. The doctor’s are very upbeat about my prognosis.:

3. The oncologist's comment that many people have more physical problems with the first phase, which I completed in November with few problems, than with the second phase that is upcoming. I can really see how this could be the case because I was receiving 165 mg/per day + radiation during the first phase and the dosage I will be taking now (300 mg/day) averages out to 54 mg/ day over the 4-week cycle without radiation.:

It is wise for me to remember that I still have a serious diagnosis and there is significant healing work for me to focus on in the coming months.

Weeks 5 and 6 of Break: December 13 to 29

On December 17, Susanne and I had a telephone consultation with Julie Walker, a medical intuitive in Chicago (Susanne’s third conversation with her and my second over the last year or so). Some of the things she indicated were:

o What we are doing is working and, surprisingly, the chemotherapy drug I am using appears to be a “perfect” match for my constitution and blood.

o I should slow down, watch my fatigue level, rest when called for, and don’t deplete my natural resources. Fatigue is actually a very positive message to my body and will help my immune system responses and strengthen my will to heal and live.

o The l-Glutamine and vitamin B-6 are the appropriate treatments for the neuropathy symptoms, and it will take time for my damaged nerves to heal.

o I could benefit from more antioxidants and green vegetables.

o I have work to do internally on accepting my worthiness to heal and live and affirming my purposes in life.

o Susanne and I can consider this journey as training for a sacred mission to help others.

From December 20 to 27 we were in Florida. The oncologist had agreed to delay the start of the next phase of treatment to allow this trip to happen.

The beginning of the week was in Orlando at the annual Baha'i Social and Economic Development Conference. We were invited to present 2 workshop sessions. One was entitled “Facilitating Marriage Education as an Individual in Your Community”. The other was entitled “Empowering Institutions to Build Strong Marriages”. The descriptions of these sessions can be found here. We had about 40 attendees at each session. I also performed my Three Tools of Healing presentation for about 30 people, which I really enjoyed doing. We intentionally did not go to the afternoon sessions and just relaxed at the pool, spent time with friends, and napped. However, the evening sessions were filled with uplifting musical presentations, which we did participate in with joy.

The second half of the week was in Ft. Lauderdale where we stayed with Susanne’s daughter, Jennifer and her husband Frank. They drove to Orlando to pick us up so that we didn’t have to rent a car and drive to their home. We celebrated Christmas with Frank’s family, which was fun. Christmas eve was a multi-course seafood dinner with the extended family, and Christmas day was opening piles of presents with the immediate family. Susanne and I also relaxed at the pool at Jennifer and Frank’s complex and spent an afternoon at Ft. Lauderdale beach. It felt wonderful to soak up the sun and enjoy the warmer temperatures.

The day after we returned from Florida we had an appointment with the oncologist to finish preparing for the initiation of the next phase of the treatment. This will be 5 days in a row out of a 28-day period of a higher dose of the same chemotherapy drug I took during the first phase of treatment (oral capsules of Temodar). A blood test showed that my white blood cells are recovering and that my platelet count is in good shape. However, my red blood cell (count, hematocrit, and hemoglobin) have continued to decline since the end of the first phase of treatment. Although the red blood cells are below the normal range, they are not into the anemic range so the doctor is not concerned about initiating the next phase of treatment on Monday, December 31. The red blood cells numbers being low would explain why I am continuing to feel fatigued, so we will continue to work on getting them back up. We have slacked off some on our exercising regime and some of the high-iron foods…so back to eating more green stuff! The doctor also indicated that, with the treatment regimen I am getting that many people have more physical problems with the first phase, which I completed in November with limited problems, than with the second phase that is upcoming.

We also met with the neurosurgeon’s nurse because I have been having some odd feelings around the incision. Turns out that some of the sutures, from the August surgery, were still in place. They were able to remove most of them but there are still some small pieces left, which we will keep watching. They saw no indication of infection or any other problems.

Although the neuropathy seems to be getting less, it’s still there. My understanding is that nerves take a long time to heal…so this will take some patience on my part.

We have cut back on taking pre-marriage/marriage coaching clients through the months of diagnosis, surgery, and treatment. With greater stability in my recovery, we decided to try coaching again. So, on the 29th, we began working with a couple who is exploring marrying one another. It felt great to be back making a difference in this way.

So…on to the next phase of treatment!! Keep in mind that the MRI scans continue to show no visible tumor but the doctors indicate that microscopic stuff could still be in there and will grow if untreated.

Week 4 of Break: December 4 to 12

We receieved the pathology report from Susanne’s surgery. It was benign…YEAH.

It was a week of visits with both the doctor’s responsible for my treatment as well as several alternative practitioners. As I noted in the previous post, on Monday December 3, I had my first MRI scan following the completion of the radiation treatment. The scan showed no visible tumor growth and the swelling in the brain continues to abate (YEAH!!). The primary lingering symptom I’ve been trying to get answers regarding is the neuropathy (more generic term for the numbness on my right side) symptoms. I received a variety of input on this:

• The radiation-oncologist had expected to see some sign of swelling from the radiation treatments that would explain the continuing neuropathy symptoms. Not seeing this, he was unable to explain them.
• The dietician at the Block Integrative Cancer Care Center provided a recommendation that I take l-Glutamine powder for sure, and potentially l-acetyl carnitine, alpha lipoic acid, and Vitamin B-6 supplements as well.
• My clinical dietician at Ireland Cancer Center (University Hospital) agreed that l-Glutamine would be strongly indicated.
• The hematology-oncologist indicated that it was unlikely that the neuropathy was from the chemotherapy and indicated that the Vitamin B-6 was a good idea.
• Our chiropractor adjusted me, which helped relieve some of the numbness in my back and legs.
• My sister, Nancy, did a session of orthobionomy on me, which immediately allowed me to feel full movement in all my right toes.
• I had a further session with my sister’s colleague Jeanie Anderson. She does both Total Body Modification and muscle testing of supplements, etc. Her guidance about the supplements was that I tested positive for needing the l-glutamine and Vitamin B-6 but not for the other two supplements. She also tested how well my neurotransmitters were working and identified two that needed to be re-balanced, which she did. She is also treating me for fungus and bacteria that she is indicating are interfering with my total wellness.
• The neurosurgeon indicated that the neuropathy was probably not so much cancer or radiation/chemo related but was more likely an outcome of the original brain surgery in July. He provided a referral to a neurologist to confirm this and see if there was anything further to do.
• The conclusion of all this is that, in regards to the neuropathy I am: 1) taking l-glutamine and Vitamin B-6, 2) seeing the recommended neurologist on Feb 7, and 3) visualizing reduction of the neuropathy symptoms.

To have the further session with Jeanie Anderson, we traveled back to Pennsylvania (about 2.5 hours drive) and stayed with my mother. This gave us the opportunity for much more quality time together than we had at Thanksgiving. We also had a quiet dinner and visit with my sister, which was good to do as well.

In addition to all the above medical visits, Susanne and I also got to the dentist. He said my gums and teeth are in better shape than they have ever seen them. Must be all that good nutrition! Or maybe the radiation and chemo zapped all the bad stuff :).

On December 11th, we took a break from medical stuff and participated in a book signing at the Crooked River bookstore in downtown Cleveland. The store set up a table for us in the mall next to the door for the store. It was a bit tiring, and we didn’t sell very many books, but we had a good time interacting with people and taught Character Quality Language to about 20 people.

Week 3 of Rest Break and Opportunity to be Care-Giver: November 28 to December 3

Susanne had been experiencing some abdominal pain over the last couple of months. She went to the doctors and they diagnosed a routine ovarian cyst with no action needed, but in the process found a polyp in her uterus, that is most likely benign. On November 28, she went into the hospital for out-patient surgery to have it removed. Within 45 minutes of going into the OR, the doctor came out to report to me that the procedure went as expected and there were no complications. Biopsy report is expected within a week of the surgery. Susanne was put under general anesthesia, with assistance from our friend, Ban Twaddell, who happens to work as a nurse-anesthetist at this hospital, so she needed to be in the recovery area for an hour or so afterwards. Because I am not yet permitted to drive, our friend, Janet Lyon, provided transportation. We actually went out to a parking lot the night before to see if I was physically/mentally capable of driving just in case Susanne needed me to urgently drive. I was pleased to find that I was. The reason I’m not permitted to drive it is that the leg spasms of July 17 were classified by the surgeon as seizure activity. Ohio State law imposes an automatic 6 month no driving restriction following last seizure activity. Prior to the end of the 6-month period (January 17) I will have a formal driving fitness test at the Rehabilitation Center.

I started into my care-giving opportunity by loading an MP3 player with some of Susanne’s favorite meditative music and the Long Healing Prayer (You’ll recall that I use a CD of this prayer during MRI scans and radiation treatments). It was wonderful to be able to care for her, as much as she’d allow, and prepare some of the meals over the next couple of days. A small recompense for all she’s been doing for me since July.

On Friday November 30, we attended a movie night at the Gathering Place. They showed the movie “The Big” with Tom Hanks as the lead character followed by discussion about how the movie related to our cancer situations. In the movie, a 12 year old boy makes a wish to “Become big”. Overnight he, externally, becomes an adult but on the inside remains a 12 year old. The discussion got into numerous areas but, for us, the richest conversation was after we got home. In the car, we began some discussion that posed questions for me that I requested time to ponder on before talking further. I immediately went to my personal journal and wrote the following: “Two questions loom large for me in the conversation with Susanne after watching “The Big”.

• 1. Is my perspective of my path, since diagnosis of the tumor, as a spiritual journey just a drug-induced escape? As I continue to reflect back, I see that I was truly guided, by what I’ve come to call the Fact-Based Spirit-Guided Path, to bring the Three Tools of Healing with me and ponder on putting it into practice before I had the first mg of steroids in my system. There is no question that the steroids eventually hooked onto that, elevated my excitement, created an edge and grandiosity that eventually diminished during the 3 week phase-out period after the surgery. The core spiritual experience is, however, solid and real. (Susanne’s comment, during the discussion, on our different journeys was that I was flying high on drugs and she was dealing with the extreme angst from the uncertainty of what was going to happen to me. My characterization has often been that I was in heaven and she was in hell. We have both agreed to refrain from using these characterizations in our conversations, as she views her path as spiritual as well…just very different.)
• 2. Am I in denial about there being elements of “ordeal” in this journey? What would it look like to experience the full range of emotions around what’s happening…I resolve to be more immediate in doing so and see what happens. It’s not all sweetness and light. I am scared that I’ll not succeed or that my quality of life will severely diminish.

Baha’is all over the world have been geographically grouped into Clusters as part of an effort to build neighborhood-based activities such as children’s classes, junior youth groups, spiritual study circles, and devotional meetings. On Saturday December 1, we attended a very uplifting gathering, called a Reflection Meeting, of the Baha’is in our Cluster.

On Sunday, December 2, we had a delightful visit with my very long time friends Stephanie and Dustin Dornbrook. We first met in 1971 and our children grew up together. Stephanie was diagnosed with pancreatic cancer over 2 years ago. The statistical survival prognosis for this form of cancer is even more challenging than for my diagnosis of Glioblastoma multiforme. Since her diagnosis she has survived to witness the marriage of her youngest child and the birth of her first grand-child. She was recently advised that the cancer has now spread as a mass behind her stomach and is inoperable. The prospect of losing my dear friend, Stephanie, in the near future, deeply saddens me.

On Monday December 3, I had my first MRI scan following the completion of the radiation treatment. The scan showed no tumor growth and the swelling in the brain continues to abate (YEAH!!). The radiation/oncologist indicated that he is baffled as to why my numbness is not abating but gradually increasing. He had decreased the steroid dosage last week and prescribed a phase-out dosage, because the drug was not reducing the symptoms. We meet with the hematology/oncologist on Thursday and have requested a referral to a neuro-oncologist. This hospital’s neuro-oncologist left earlier this year and has not yet been replaced. We are now seriously considering that the chemotherapy may be causing me some lingering symptoms.