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.

First 2 weeks of Break: November 13 to 27

It has wonderful to not be going to the hospital every weekday for radiation or taking the chemo every day. The following is a summary of my condition during radiation and my current condition.

• Mild to moderate level of fatigue and some reduction in higher-level cognition skills and focus. I was able to resume part-time work during the first week of treatment and worked approximately 10 hours per week each week during treatment. I am gradually increasing the amount of work time since the end of the treatment period.
• Almost no nausea throughout the course of the treatment, with no anti-nausea medication (Zofran) needed. It appeared to be highly beneficial to take the Temodar two hours after eating rather than one hour before. With the absence of nausea, I was able to significantly follow the dietary plan that was prepared for me by the Block Integrative Cancer Center in Chicago in September.
• Some hair loss, which has provided me the opportunity to sport a beret, which I am enjoying!
• Little if any scalp burning and minimal itching. I have been applying straight aloe juice to my head a couple of times a day. I have been washing my hair daily with a chemical-free organic shampoo (both Aubrey Organics products).
• No seizure or spasming activity is occurring.
• Numbness on the right side of body (primarily foot and leg) increased somewhat in severity as radiation progressed. These were the initial symptoms I experienced prior to the tumor diagnosis. The numbness had remained at a very low level through the post surgery recovery. Dr. Einstein attributed the numbness to some brain inflammation and prescribed 2 mg daily of Dexamethasone. The numbness has continued to increase, and is manifesting up my right side as well so Dr Einstein increased the Dexamethasone to 4 mg for the next week. This is to be re-evaluated when I meet with Dr. Nock on Dec 6.

We decided to graph my blood test results during and prior to treatment. We started doing this after we saw that the red blood cell and hematocrit levels from the first week after treatment began were below the “normal range”. When we went back and graphed all the blood tests we had we noted that these had been low since the surgery. We voiced our concern that nothing had been said to us about this so that appropriate steps could be taken to enter treatment in the best possible condition.

• White and red blood cell counts remained at or above the levels measured prior to the initiation of treatment. We attribute this to a combination of prayer, visualization, exercise, and nutritional support that included iron and Vitamin C rich foods.
• The white blood cell and neutrophil counts dropped drastically in the blood test at the conclusion of treatment. This is attributed to the chemotherapy. I am being cautious around people with colds and flu, have strengthened my visualization around rebuilding these key elements of my blood, and increased my intake of antioxidants. The next blood test will be Dec 6.
• The blood platelet count dropped dramatically during treatment weeks 4, 5, and 6. When Dr. Nock’s office advised us on 11/6 that the count was at an initial concern level (<100),>

On the 13th, I had second hypnotherapy session, with Dan Clark, to reinforce the plan for this rest period, that I described in the previous post. Once again, this was recorded and I listen to it each day as I am going to sleep. He wove into it the bird in flight image, that I also described in the previous post. I also described for Dan the Bahá’í Holy places in and near Haifa, Israel and he used those extensively in the session. I would be more than happy to send an MP3 file of the session to anyone who would like to hear it. Send me a message at craig@marriagetransformation.com. I have created a photo montage of the bird in flight over the Holy Places that I use as a meditation focus, Dan is also an energy healer, so I also requested that he do what he could about the numbness. When I got home, I soaked in the bathtub with Dead Sea Salts. When I woke the next morning, the numbness was the lowest it had been since prior to the start of radiation treatment. I began carefully not using the cane and, even though the numbness has gone back up again, I still feel confident in walking without the cane. Along with going to my sister’s for Thanksgiving (more on that below) I had a healing session with Jeanie Anderson a colleague of hers. My sister is also a healing practitioner specializing in ortho-bionomy. It was a wonderful session with Jeanie that, among other things, helped us refine the supplement plan for this phase of the treatment. Other activities during this period were:

• On the 14th, my daughter, Michelle and granddaughter, Karida, made a quick trip to Cleveland from Dayton. They were driving a friend to Cleveland for a medical treatment. We had nice lunch with them.
• On the 15th, we attended the Spirituality Group at the Gathering Place. I continue to find it nourishing to be able to share the spiritual perspectives I’ve gained on this journey and hear from others.
• On the 18th, we participated in an Interfaith Thanksgiving service at the local Methodist Church. We had helped setup the service working with the Presbyterian minister. Since last years service had basically consisted of Christian and Bahá’í, she asked if we could assist by recruiting representatives of other faith traditions. Susanne took on the challenge and added Buddhist, Hindu, Muslim, Jewish, Sufi, and Native American. She and Bob Horn offered readings from the Bahá’í scriptures and I played my Native American flute as a lead in to the Native American presentation. Before doing so I indicated that I was playing the flute “In recognition of the fact that most Native Americans see little to be thankful for in the coming of the Europeans to North American”. Between that statement and the preceding offering, it actually seemed to have a profound impact on the content and spirit of his presentation. His presentation was followed by a prayer, from the Presbyterian minister, oriented towards reconciliation, etc.
• On the 20th, we attended a Devotional Meeting at a friend’s house that was focused on Thankfulness. It was a wonderful lead in to the Thanksgiving season.
• The entire Thanksgiving Day was marvelous. All of my 3 children (with spouses/boyfriend) and 2 grandchildren, my sister’s 3 children and 1 grandchild, and our mother had a wonderful meal and time together at my sister’s in Butler, PA.
• On Friday, we brought our 3-1/2 year old granddaughter, Karida, home with us for her first stay with us alone. It was so much fun to have her with us! We had a great time reading books together and she and Nanna explored a pomegranate. A childhood friend of my daughter’s, Mercy (Alucho) Jenkins, has a child, Aria, who is the same age as Karida. We got Aria and Karida together and took them to lake farmpark where they got to milk a cow.
• On Sunday we drove to Columbus to return Karida to her parents, who live in Dayton. We had the special bounty of spending the night, in Columbus, with friends of mine since college, Andy and Shelly Rezin. Shelly and I declared ourselves as Baha’is at nearly the same time, during fall term of our freshman year. My apologies for the length of this post…..there was so much good stuff going on that I didn’t find time to break the period up into smaller chunks.

Final Week of Treatment: November 4 to November 12

November 12 was my last day of the Low Level Chemo/Radiation treatment…yeah!!! We took pictures with both the radiation technicians and Dr Einstein and his nurse Kathy. Dr Einstein indicated that I had done extremely well through this phase of treatment.

I reviewed with him the visualization points I plan to use during the upcoming 6-week resting period that will be followed by higher level chemotherapy beginning in early January. What we came up with was prayer, meditation and visualization to:

1. Soothe and heal the normal brain cells that may have been inflamed or damaged by the radiation

2. Prevent any further radiation necrosis (death of healthy brain cells)

3.Encourage cancer cells to recognize that their DNA is now damaged and die

4.Recall the radiation and chemotherapy as healing energy

5.Support the white blood cells in continuing to surround and remove any remaining pieces of the tumor

6. Strengthen all aspects of my mental, physical, emotional, and spiritual wellbeing in preparation for the high-dose chemotherapy in January

Dr. Einstein had been at a medical conference recently and shared with us that they now have 4-year survival rate data for the new combination chemo/radiation protocol I have just completed vs. the previous treatment of radiation alone. He indicated that the 4-year survival rate has been shown to increase from 3% to 15%. He assured me that, as far he was concerned, I was clearly in the 15% group that would live at least 4 years or more.

An MRI scan will be done in early December and there will be check-up visits with each of the 3 doctors (neurosurgeon, oncologist, and radiologist).

Other interesting events of this week are as follows:

1. Once again had lunch with my son. Getting together with him has been wonderful for me.
2. Traveled to Michigan for an uplifting, inspirational meeting of Bahá’ís from Indiana, Ohio, and Michigan on Saturday. Many Cleveland folks chose to make it a long same-day drive. In order to not overtax my energy, we chose to drive up Friday afternoon, have dinner with our friends, Cheryl and Wade Schuette, with whom we celebrated my 56th birthday, stay overnight, and return home mid-afternoon on Saturday, instead of staying for the whole day. During the meeting, I was inspired to develop a call/response song and taught it to some of the other people. The “call” part is “Learning in action”. The “response” part is “The more we do, the more we learn.” “Learning in action” is part of the culture of the Baha’i community, and Susanne and I also adopted it as the slogan for the Marriage Transformation Project.
3. I had been interviewed by a reporter from the Bahá’í National Center for a story to go on their website. It was posted.
4. During my meditation time on Sunday, I was inspired with a new image of how I’m seeing the application of the Three Tools of Healing (Medical Treatment, Prayer, Joy & Laughter) to my journey.
1. The image is of a bird in flight.
2. The body of the bird is the Medical Treatment.
3. One wing is prayer, meditation, and visualization.
4. The other wing is nutrition, supplements, and exercise.
5. Joy & laughter creates an uplift of wind under the wings.

It’s raising my spirits each time I envision this image!

Craig's Diet

Craig has mentioned his diet often enough that people are asking me to post some particulars!

We began with a diet from the Block Center for Integrative Cancer Care up in Evanston (Chicago), Illinois, where we visited in September. Some of their advice has become part of our routine, and some of it we have set aside or supplemented/adjusted in consultation with the dietician at University Hospital. Please keep in mind that diet is often very individual – people have illnesses, allergies, and tastes that vary, so please don’t just adopt our diet, particularly if you have cancer, without consulting with a certified dietician or other professional. Note: For the most part, I’m eating exactly what Craig is…and it’s helping me stay healthy as his caregiver!

It is also important to note that Craig’s ability to follow this diet has been significantly linked to his ability to avoid being nauseous during the chemotherapy and radiation. He was on pills, not IV chemo and was allowed to take it two hours after eating. Not taking it on a totally empty stomach helped. Visualization and prayer were also key assistants.

Major parts of the diet we are following:

* Choosing organic food whenever possible, especially fruits and vegetables

* Using whole grains and whole grain products (oats, rice, wheat, quinoa, millet, barley, flax)

* Increased intake of vegetables, including onion and garlic (we have recently cut back on garlic due to Craig’s bloodtests – it is an anti-coagulant); tomatoes daily

* 4 to 5 servings of fruits per day

* Approx. 100 grams of protein daily, particularly plant-based sources (lentils, beans, seitan, whey, soy (limited), white chicken, some fish, tree nuts—cashews, pecans, walnuts, pine—and seeds (sunflower, pepitas/pumpkin seeds), organic eggs (no peanuts or peanut butter or red meats); we do a protein shake for breakfast most mornings along with our food

* Sprouted/whole grain bread

* Limited fat intake; no margarine, very little butter; little olive oil

* Limited fruit juice

* Very limited dairy products; using rice, soy, almond, and oat milk substitutes

* Green tea (recommended to drink 2-3 cups daily; Craig is only drinking 1 and I’m drinking none)

* Very limited sugar intake; using Agave and Stevia or nothing; little honey

Parts we are not following:

* Wild/freshwater/coldwater fish (has been very difficult to obtain)

* Sea vegetables (we tried them but really don’t like the taste!)

When we realized that Craig’s red blood cell/hemoglobin/hematocrit counts were low, the nutritionist at University Hospital helped us to figure out what counted as iron-rich foods. She told us that for the iron to absorb, we needed to then accompany the food with something containing Vitamin C. So, the iron-rich foods that we increased were:

* eggs, pumpkin seeds, lentils, walnuts, parsley, spinach, sweet potatoes, raisins, oranges, and blackstrap molasses

For the Vitamin C, we include citrus fruit, tomatoes, peppers, berries, cantaloupe, or leafy greens.

When Craig’s platelet count dropped, I began to get a bit frustrated…there does not appear to be any nutritional recommendations to increase platelet count. Platelets are formed in the bone marrow and stored in the spleen. Those are both kept healthy by exactly the foods already in Craig’s diet! Weight-bearing exercise also helps the bones/marrow stay healthy, so we are walking. And, I’m doing an energy flow on Craig (Jin Shin Jytusu) that could help the spleen release more platelets. This challenge is more up to prayer and Craig’s visualization though. The decrease in his chemo amount and the chemo ending on Nov. 12^th will help too.

Susanne

Blood Platelet Alert

We got the results of my weekly blood test results this morning.

• My red blood cells are going back up in a healthy direction with diet, visualization, and prayer (still a bit below normal, but not worrisome).
• My white blood cells are in good shape too.
• However, my platelets (the part of the blood that makes clotting happen normally) have decided to act up in response to the chemo and drop to a level that caused a bit of an alarm reaction at the doctor's office this morning (Normal is 150-450 and he was at 95). The doctor lowered my amount of chemotherapy medication in response for this final week of radiation/chemo. And I am supposed to stay away from sharp knives! When the count gets low, it is harder for bleeding to stop promptly.

Your continued prayers and positive thoughts focused on keeping my body in balance in response to are treatment are appreciated.

Treatment Week 5: October 27 to November 3

I’ve gone through 24 of the radiation treatments with 6 to go…YEAH!!! The fatigue continues, so I’m napping a bit more. On Friday (November 2) the radiation technicians shifted, as planned, to a more focused targeting of the same amount of radiation on the immediate tumor area. They call this a boost. When the doctor explained what this was about during last week’s meeting, I offered the suggestion that it might be useful, to the piece of mind of the patient, that they refer to this as a focus and not a boost. The boost to me implies that they are increasing the level of radiation exposure. He agreed my wording was better!

The doctor had also advised, early in our discussions, that the pre-surgery symptoms might well return as the radiation progresses and the brain swells in response and that this should not be taken as cause for concern that the tumor was re-growing. The day after the more focused radiation began, I did start to feel more of the right side numbness symptoms. I’m continuing to take anti-seizure medication (Keppra) and doing visualization to avoid seizures, too. I am also adding to my visualization a soothing action to the affected area. I also started doing foot and whole body baths with Dead Sea Salts.

Other high points of the week were:

1. Susanne and I went to a Mexican restaurant for dinner. This is a family run place so is much closer to the authentic Mexican cuisine, that I’ve gotten acquainted with on my previous frequent business trips to Mexico, than many of the so-called Mexican restaurants that are around. For instance, they make their own taco chips on site…YUM! We thoroughly enjoyed the food and the time together away from home.
2. I was taken to the Sunday morning breakfast by Rick Eastburn. He owns a Pontiac Solstice convertible so, even though the weather was bit cool, he had the top down as it was a sunny day, with passenger compartment head on. We had a great time driving down the freeway, fast enough for a thrill. It was good to see the regular gang that comes to this breakfast.
3. Due to the hair loss, I wanted a hat that was a cut above the baseball cap or knit wool that was the extent of my hat wardrobe. We found a place in downtown Cleveland that sells nothing but men’s hats, The Mad Hatter, and went there after treatment on Monday. The clerk suggested several possibilities that we looked at. I tried them all on and got Susanne’s opinion. What I settled on was a brown beret. It’s been fun wearing it around, and I’ve gotten many compliments on how good it looks on me and teasing about looking like a French artist.
4. On Thursday I offered the Invocation at the Toastmaster’s meeting. The topic was Equality of Men and Women so I read “" The world in the past has been ruled by force, and man has dominated over woman by reason of his more forceful and aggressive qualities both of body and mind. But the balance is already shifting; force is losing its dominance, and mental alertness, intuition, and the spiritual qualities of love and service, in which woman is strong, are gaining ascendancy. Hence the new age will be an age less masculine and more permeated with the feminine ideals, or, to speak more exactly, will be an age in which the masculine and feminine elements of civilization will be more evenly balanced." (‘Abdu’l-Bahá: The Compilation of Compilations, Vol. II, “Women”, p. 369)
5. Friday I led the meditation class, that John and Laurie Cunningham hosted at their home twice a month. Our friends Vanessa Mullins and Joyce Ashman joined us. The class was in three parts. First we read and discussed the Bahá’í Writings that are interspersed between “Medical Treatment, Prayer, Joy& Laughter” on the Three Tools of Healing poster . Second, I shared the journey of prayer, meditation, and visualization that I have been on since I first got the diagnosis of the tumor. I indicated that the work I was doing pre-surgery was from limited knowledge and much more being guided by the Spirit. After leaving the hospital, I was given a copy of "Love, Medicine, and Miracles" by Dr. Bernie Siegel. I read some extracts from it and indicated that it had profound impact on furthering the journey as I was heading into the cancer treatment. Third, for the meditation exercise, I played CDs of The Long Healing Prayer and a guided imagery by Belleruth Naperstek. I had a wonderful time doing this and many of the participants commented that they really liked it.
6. We were invited to a surprise birthday party for our friend Louise Mosher. The party was right around the corner from my son, David’s apartment, so we stopped in for a visit with he and his wife and grandson Aidan. It was a wonderful visit. He shared with us that he had a great time attending a Halloween costume party dressed up as Uncle Fester from the Addam's Family. He dressed up his ear to ear surgery scar in doing so. He and I came up with next Tuesday as another lunch date! The party was people from various areas of Louise’s friends, we know her through Landmark Education, so it was a nice opportunity to both meet some new people and see some old friends.

Treatment Week 4: October 22 to 26

I was somewhat more fatigued this week and not quite as mentally sharp, but I have confidence that this will pass. Susanne has been doing such a terrific job with my nutrition and supplements that all the blood cell counts are staying stable from week to week. Apparently chemotherapy can often severely depress these, which is why they are checked each week. My wife is so wonderful!

The high point of the week was finally to have time with my son, David, on Friday that I have been looking forward to since August. We had many events occur in the meantime, including my second surgery, his second surgery, etc. I was dropped off at his house, by Matt Dunlop, who drove me to my radiation appointment. Dave and I went down the street to have lunch together. We shared with each other how the cancer and treatment process has been going for us and talked of many other things, particularly our relationship. It felt good to just be with my son!! We then went back to the apartment, where he lives with his wife and son, and Susanne came to pick me up. We all spent more time together, watching television and talking.

We had a frank conversation with the oncologist about the overall treatment plan as described in the September 19/20 blog posting. I noted that the September 20 MRI scan indicated that the swelling (edema) was significantly reduced and that there was no visible evidence of tumor re-growth. The plan is for another MRI scan to be done a month after the current phase of treatment ends on November 12. I asked if that MRI still showed no visible evidence of tumor re-growth, was the second phase of higher level chemotherapy, scheduled to start January 2, still indicated. He was very clear that the MRI would not be conclusive about the state of the cancer, and research indicates that the chemo will be necessary! I was disappointed, but I can accept the value of the fact-based clinical research behind his position. It is possible that chemo may not have to go the full 12 months as forecast, however. Originally the second phase would have been scheduled to start December 17. In order to allow us to go to Florida from December 20 to 27 (to speak at a conference and visit my step-daughter, Jennifer and her husband) unimpeded by the chemotherapy he had previously agreed that the start date could be moved back with no negative impact.

Had my final session of physical therapy. They indicate that my right front shin muscle is now fully functional. They provided a set of exercises that I should continue doing. It’s wonderful to have full use of my right foot back. However, I do still use a cane for some additional safety as I continue to experience numbness in the foot and leg.

I am continuing to work part-time at my job, mostly from home, which feels good. Since the daily chemo/radiation treatments take up most of the morning, and I’m needing to nap each afternoon, it is seeming like 8 hours or so a week is the best I can do. I hope to ramp that up to at least 16 hours a week after November 12, when radiation ends.

October 18 to 21

This was a very spiritual period.

On Thursday October 18, we attended another session of the Spirituality Group at the Gathering Place. I take great joy in sharing about the spiritual PLAN (as described above) I have chosen and hear what others are doing. This group is very receptive to this kind of conversation.

We had been invited, by my dear friend Debbie Boyd-Tressler, to attend a Healing Retreat, this weekend, which was being put on by the local Sufi community. The Sufis can be considered as a mystically oriented tradition from Islam that arose, in Iran, shortly after the revelation of the Holy Quran. The Americanized version of it seems to take a very universalistic approach to all of the world’s religions. Part of the retreat included an “Informal Universal Worship Service” where they read from and honored the scriptures of most of the world’s major religions. We shared some of Bahá’u’lláh’s “Seven Valleys and Four Valleys” that was revealed for the Sufis and also taught them a song. It was well received. It was very easy to share about the Bahá’í Faith, which was great fun.

My primary reason for attending this retreat was to gather as much spiritual energy around healing as I could. The timing was perfect, as I’ve now completed 3 of 6 weeks of the chemo/radiation regime. The weather was perfect, and the trees changing to autumn colors were gorgeous. The meeting room we used at Camp Asbury in Hiram had large windows and was surrounded with balcony and colorful trees very close in. I felt encircled in love and healing energy and wrote my second poem since leaving the hospital in August:

Autumn Trees

Flowing drifting floating.

Gentle waves reach over me.

Encircling me in light.

Encircling me in healing.

The energy of life abounds.

The power of love transforms.

I feel connected to all of this…as a lesson to absorb.

The gentle breeze filters through the swaying trees caressing them with love.

A reminder of God’s eternal love available at all times.

10/20/07

Hiram, Ohio

Sufi Healing Retreat

October 11 to 17

I’m approaching the mid-point of the 6 weeks of chemo/radiation and feel that the PLAN (as described above) is working well. My side-effects have been minimal:

• I am losing some hair on the top and left side of my head where the radiation is focusing. This is an inconvenience due to the frequency of cleaning the bathtub and vanity sink strainers but doesn’t really bother me.
• I am experiencing some fatigue, so I take somewhat more frequent naps.
• Over the weekend, I did experience some headaches and a touch of queasiness.
• The numbness in my right leg increased and extended beyond the foot and lower leg (where I’ve had numbness since being discharged from the hospital and going into rehabilitation for my front shin muscle). I brought this to Dr. Einstein’s attention. He indicated that this was likely due to swelling resulting from the radiation and provided a prescription for a low level dosage (2 mg daily) of steroids to control the swelling. I’ve now taken them for 2 days and the numbness is decreasing.

The radiation therapists continue to indicate that they enjoy the Long Healing Prayer that I play during the sessions. I’ve also started alternating this CD (male voice) with a recording of Christina Quinn (female voice) singing the same prayer. I sometimes now ask the therapist if she wants to hear the male or female voice.

Having various friends drive me to the radiation sessions has been a delightful opportunity to get to know them better and vice versa. I am providing each of them with a copy of the Three Tools of Healing poster, which has elicited some good conversation.

In addition to participating in the International Gliogene study, coordinated at MD Anderson Cancer Clinic at the University of Texas, mentioned in an earlier post we also had an appointment on Octobr 16^th with Genetic Cancer Specialists at our hospital. The intent is to get guidance on potential brain tumor risks and general cancer risks for the rest of our close family members. (You may recall that my son, David also has a brain tumor diagnosed in March.) The genetic assessment was a very interesting process. We had prepared a detailed family health/cancer history in spreadsheet formats, for both my son and I. The doctors reviewed them in detail and developed a very intricately annotated family tree drawing. They also asked a zillion other questions and did an overall examination of my skin, eyes, ears, and mouth. Now they will gather key data from the medical records of some family members of interest to them, including David.

During this week we also had the bounty of my mother-in-law, Kay Muttart, visiting us. She drives down from Toronto about twice a year and it is always a delight to see her. Because she’s an avid baseball fan, we watched the beginnings of two of the American League Championship Series exciting games between Cleveland and Boston. We’re delighted to see Cleveland doing so well…it’s a real boost for civic morale. (And, yes to family members who know we don’t watch TV, we got reception and could fairly clearly see the action and nothing bad happened to us from turning the TV on! J) Whenever Mom comes down, she and Susanne go into “shop ‘til you drop” mode and we enjoy eating out together.

I continued to successfully work part-time and have really enjoyed being back among my colleagues. I am planning to work as much as I am able to, around medical appointments, fatigue, etc. It’s making me happy seeing Susanne back to working part-time too.

I had my second to the last Physical Therapy session. They are clearly pleased with how well my right front shin muscle is performing and keep coming up with more and more challenging activities to continue the strengthening and test mobility and stability. One more session next week and that will be it. I plan to get a prescription from the neurosurgeon to return in December or January for certification of my ability to return to driving. You may recall, that the July 17 spasms in my leg were interpreted as seizure…thus no driving, per Ohio State Law, for 6 months seizure-free. I’m now half way to the 6-month date of January 17…YEAH!

October 6 to 10

Susanne’s brother Daved and his wife Arpi visited for the weekend from Toronto. They came with the intent of helping as much as possible and they sure did. Arpi cooked various dishes that are in the freezer for future use and assisted with various other needed activities, such as working with Susanne to get all the plants back inside for the winter. Daved and I got a lot of outdoor fall clean-up work done.

In preparation for our Monday meeting with the Radiologist and his nurse, we developed an additional set of questions for the nurse to ask me each week. She agreed to include them in the chart and update them each week…We’ve come to the conclusion that the medical staff is really getting to think that we’re not the average patient team…but that’s OK with us! Case Western Reserve University, which is associated with the hospital, is actually the birthplace of Appreciative Inquiry. It’s a method of looking for what’s going right instead of what’s going wrong. We just wanted a dose of that in my weekly checkup! We also provided Dr. Einstein and nurse Kathy Fox with a great cartoon about brain surgery that friend Martha Maclachlan mailed to us. So, we supplied some laughter this week too.

We received the first week’s blood test results on Tuesday. They showed my red blood cell/hemoglogin/hematocrit counts lower than the normal range, which we automatically attributed to the chemotherapy. The red blood cells being low would readily explain the tiredness I’m experiencing, because the red blood cells transport oxygen throughout the body. Susanne contacted our assigned hospital nutritionist Kim Ortega and was advised that the best thing to do for this situation was to increase my intake of iron and vitamin C, which we are now doing. The next day, however, we obtained the blood test results from before the chemotherapy began and back into August, and in fact, my numbers this week have improved over last week, not declined! It’s frustrating to discover that apparently my red blood cell counts have been low for quite awhile and no one told us. We will now reconstruct and graph my blood test results from the last year and watch them going forward weekly to observe trends. This was a good example of being careful about drawing conclusions without all the FACTS! In reflecting on all the foods that Arpi fixed over the weekend, they were high in both iron and vitamin C, so that may be where the improvement came from. But, we’ll keep fact-finding and observing what occurs…

First Week of Treatment Completed: October 2 to 5

I’ve now completed 1 week of radiation treatment along with low-dose chemotherapy and have found the routine, described in the October 1 post to be very sustainable and supportive. Some highlights of this period are:

1. I am having little, if any, side effects so far. The only thing I’m noticing is that I’m tiring fairly easily so I don’t push myself…I just take a nap when I get tired.

2. The schedule of drivers for transportation filled up nicely and it’s been a wonderful opportunity to get to know some friends and neighbors better as we make the journey to and from the hospital (about 30 minutes each way).

3. The radiology techs have commented that they really enjoy the Long Healing Prayer CD that I’m playing each day.

4. At the conclusion of each radiation treatment, my face kind of looks like a Spiderman mask from the imprint of the mask that holds my head still and guides the technicians where to radiate.

5. I worked at my job 8 hours throughout the week. Part of that was from home, but Wednesday afternoon I worked 3 hours at the office. It felt very good to be with my colleagues again for the first time since July.

6. My son and I have been invited to participate in an international study to better understand any hereditary links involved with brain tumors. All the participants have two brain tumors in the family. The family health/cancer history we have already been assembling in preparation for a genetic counseling session coming up in November will be useful for these researchers as well. Their goal is to discover a genetic marker that can be detectable through blood tests so that brain tumors can be more readily detected in the future.

Treatment Starts: Monday, October 1

The first treatment was smooth and uneventful. I have developed what I think will generally be my morning routine around the 6 weeks of chemo/radiation treatments:

1. Eat breakfast before 8 AM to allow 2 hours, per pharmacist recommendation, before taking the chemo pill.
2. Listen to the 1/2 hour tape from my hypno-therapy session starting at about 9:30 AM to get me fully connected with my “PLAN”.
3. Take the chemo pill at 10 AM welcoming it to do its healing work. When we had originally spoken to the oncologist about the timing relative to the radiation treatment, he indicated that it did not matter. When Susanne pointed out research literature that indicated the optimal timing was 1 hour prior to the radiation, they agreed, and we may have helped with refining what they will be recommending to future Glioblastoma patients.
4. Depart for the hospital for 11 AM radiation appointment.
5. During the radiation treatment have the beautiful musical rendition of the "Long Healing Prayer" from the Writings of the Bahá’í Faith playing. I had neglected to mention during the post on preparation for radiology begins that I had played this CD during the MRI and the technician was so taken with it that she asked permission to make a copy. The site I’ve linked to above contains a free download of the music and shows the words. The artist, Allen Tyrone Johnson, also has audio gift cards available.

Each Monday, there will be a meeting with Dr. Einstein, the radiologist, and his nurse, Kathy. Susanne will be my driver that day to participate. The nurse basically goes through a set of questions to determine if any side effects are present. After she left, we reflected on how problem-oriented the questions are and that there are none to determine what positive state I’m in. We are now devising an alternate list of questions for her to ask me (the doctor has approved us working on this list), and we’ll post it next week when they are final. We had an excellent discussion with Dr. Einstein:

1. I explained to him that I am doing visualization work to support the radiation treatment and that seeing exactly where they are targeting would be useful to me. He showed us a detailed mapping of my head and showed exactly where they are targeting. This targeting is based on analysis of all the MRI images taken over the last few weeks, including back to prior to the surgery so that it takes into account the full extent of possible cancer penetration. Based on these images, we agreed upon where I would be visualizing a layer of my white blood cells forming to surround it and remove the cancer cells.
2. We inquired about the results of the MRI scan that was taken on September 20. He indicated that the swelling (edema) was significantly reduced and that there was no visible evidence of tumor re-growth. These are both very good pieces of news. You will recall that my visualization, prior to the surgery, was building a cocoon around the tumor so they could remove it in one piece. They/we were successful, so I’m not 100% convinced that there is anything left in there. The doctors have repeatedly assured me that, given the nature of the tumor, there are microscopic tumor particles that, at this point, would not show up on the MRI. Untreated, these will quickly grow into another tumor.
3. He was very pleased with the progress on regaining the use of my right foot. He was very interested in Susanne’s theory about the role of the non-prescription anti-flammatory called Wobenzym I’ve been taking for my sprained ankle and asked what it was. He indicated that continuing to take it during radiation would be acceptable. Because it appears to have reduced brain swelling, it may reduce the future need for steroids (yay!).
4. We discussed care of my scalp and hair. The standard recommendations for products to use to protect both don’t make the best sense to us, so he has agreed that we can use alternative products instead of theirs. It’s amazing to us that cancer patients are given/encouraged to use substances containing petroleum byproducts, formaldehyde, various chemicals, and products that promote itching.
5. At the end of our meeting, he complimented us on the proactive, positive attitude with which we are approaching the treatment and to keep it up. We told him that it was our understanding that more “difficult” and questioning patients tend to live longer. That prompted a good laugh!

Today was the first day I was able to work since July 19^th, and I put in a productive 3 hours catching up on my email and getting organized to get back in the saddle. Felt good!

September 30

We had a relaxed day. We actually slept in fairly late and Susanne made a delightful healthy pancake breakfast (with nuts and fruit in the batter). I made a few phone calls and have the schedule of drivers for transporting me to the daily radiation treatments nearly full…Susanne was surprised and pleased at how easy it was to find people available and willing. I also went outside for a nice chat with my 2 neighbors, Frank and Howie. Howie will be one of the drivers.

In the afternoon, we took a field trip to Patterson’s Fruit Farm and got apples and low-sugar preserves. Susanne and Janet Lyon will be making applesauce (low-sugar variety) on Tuesday. There are many trails at this farm so we walked a fair distance with some significant hills. At the bottom near a pond we laid on the grass and soaked up the sunshine. I had my cane but did not wear the shoe with the brace. I did just fine, which was very confirming. We splurged, dietarily speaking, and had hot, freshly popped kettle corn and iced cider…a combination we have agreed will be an annual event.

I had the final IV infusion (yeah!!!) and I am now coordinating the removal of the PICC line from the vein in my arm and chest.

September 27 to 29

On Thursday, September 27 we attended the Spirituality Group at the Gathering Place. It was refreshing to find a cancer patient/caregiver group that was focused on open discussion of the spiritual aspects of dealing with cancer. It began with a meditation about walking on a path through the woods with the autumn leaves falling and then a request that we share what the symbolism of letting go like the leaves meant to us. We felt very welcome, as newcomers, and shared extensively about our journey, which the group welcomed warmly. At this point, it’s a monthly session, and I’ve already made a recommendation to the Program Director that it be more frequent.

On Friday, September 28 we:

1. Had a visit from the Visiting Nurse who changed the dressing on my PICC Line, which has been used for the last month to administer antibiotics. We had hoped that the PICC line was going to be removed but that will happen next week.

2. Met my great-aunt, Jean Taber, for a delightful lunch at the Cleveland Museum of Natural History. She is a long-time patron of the museum.

3. Had a final preparatory visit to the radiation oncology department at the hospital.

4. Visited the family physician to get a pneumonia shot. The doctors are focused on ensuring that I don’t become sick from non-cancer illnesses as the radiation and chemo affect my immune system. The oncologist has also prescribed an antibiotic that I’m to take daily for the next 15 months.

5. Watched the delightful movie, “The Last Mimzy”. Although on the surface this looks like a children’s movie it is really more than that and quite delightful. One of the co-stars, Rainn Wilson, is a member of the Bahá’í Faith.

On Saturday, September 29 Nik Tressler and I had breakfast together and took care of a number of errands I needed to do. Other than that, the day was wide open for Susanne and I to attend to whatever we chose to do…nice to have an open day! We spent a brief time sharing our fears about what is about to happen, but mostly focused on powerfully going forward. One of the milestones from the last few days is the encouragement from the physical therapists to begin walking without my foot/leg brace. We did our first neighborhood walk that way, and I’m happy to report that the numbness in my foot is receding!

September 21 to 26

Over the weekend (September 22/23) we drove to Louisville, Kentucky, with Nik and Debbie Tressler to witness the wedding of Naomi Parsley. We have known Naomi since she was a small child, as her parents Dan and Judy have been dear friends to both Susanne and I for many years. It brought tears to my eyes seeing Dan walk Naomi down the aisle. During the drive down and back (about 6 hours each way) we had a wonderful time talking with Nik and Debbie. They have been close friends of mine for 30+ years but really only acquaintances to Susanne until we married. This was our first road trip together with them. Again, it was great to be empowered to travel in spite of needing to work around the twice-daily IV infusions.

Monday afternoon (September 24) we met my mother and cousin, Ann, and her partner Pat for lunch. My mother was in town visiting a long time friend and my cousin was in the area visiting her mother, who is in a nursing home in Oberlin. It was a delightful and needed break from ongoing medical appointments.

I got back into the swing of some of my civic activities, which felt good:

1. For the local Bahá’í community, I am part of a team that coordinates local activities. The group met Monday evening, and I was able to participate for the first time since June.

2. I also serve on a committee for the city of Euclid that is working to promote the positive aspects of city, particularly the racial diversity. The committee met Tuesday morning, and I was also able to participate for the first time in several months. The committee is planning a major public meeting for October 20.

3. Our local neighborhood association met Tuesday evening. They had sent me a fruit basket when I was in rehab, and the president had prepared several dinners for us. They were pleased to see me. I encouraged them all to attend the October 20 meeting.

On Tuesday (September 25), I had my final pre-radiation/chemo bloodwork and checkup done, and Dr. Nock declared me to be in fine shape. He also willingly worked with us in looking forward and scheduling treatment around leaving Thanksgiving open to be with family and part of December open to travel to Florida to speak at a conference in Orlando and follow that with a family visit with Susanne’s daughter Jennifer in Ft. Lauderdale and her relatives for Christmas.

Wednesday evening (September 26) I experienced my first hypnotherapy session that was structured to support the plan I describe on this post. This was done by my good friend Dan Clark, who provided the Energy Healing session described on this post. The National Institute of Health (NIH) recommends this type of treatment to assist people to eliminate or reduce side effects from treatment, and I expanded its use to also create powerful healing and cancer elimination during treatment.

This is a good to time for an update on the facts from the Fact-Based Spirit-Guided Path I have been on since July 19:

• You may recall that the incision became infected, so further surgery to clean out the infection was carried out on August 28 (Susanne and my 8^th wedding anniversary). The surgeon deemed the wound to be fully healed and infection-free on September 26. This allows radiation to begin.
• Preparation for radiation and chemotherapy have been completed and treatment will begin on October 1. This is a picture of me in my radiation mask. There will be 2 phases to the treatment:

1. A 6 week period of combined radiation and low level chemotherapy, which have been found to be the most effective for my Glioblastoma Multiforme diagnosis. The radiation will require trips to the hospital Monday through Friday for an 11 AM treatment of about 15 minutes duration. The chemotherapy will be a pill that I take 7 days a weak an hour before the radiation or at the same time on weekends.
2. A 12 month period of a week per month of a stronger dose of the same chemotherapy drug.

• You may also recall that, following the initial surgery, the front shin muscle (anterior tibialis) for my right foot was unable to function. This resulted in a condition called “drop foot” because I could not raise my foot as I walked. The rehabilitation therapy, home exercises, and an anti-inflammatory herbal remedy (started when I sprained the right ankle on September 6) have successfully restored nearly full movement to that muscle. The right leg is still weak, however, so therapy and exercises are continuing.
• The doctor’s have cleared me to return to work on a part-time basis. I am developing a plan with my supervisor to work, largely from home, as I feel able to do so around medical appointments and treatment.

Preparation for Radiology Begins September 19 to 20

We had our first meeting with the Radiologist, Dr. Einstein on September 19 and preparatory work got underway on September 20:

1. He explained that the radiation portion of the treatment would be over a 6-1/2 week period of time with brief radiation exposures 5 days per week and a low level daily dosage of the chemotherapy drug Temazolamide (Temodar) (7 days a week). This concurrent treatment has been found to be the most effective for treating glioblastoma. This will be followed by a 12-month period of 1 week taking high-dosage chemotherapy and 3 weeks off of the chemotherapy.
2. I came away from the meeting with a high degree of confidence in Dr. Einstein and am ready to get the treatment underway.
3. Before the actual treatments can begin, the surgeon has to give final approval that the incision is completely healed and the IV antibiotics can be stopped. That appointment with the surgeon is set for Wednesday, September 26.
4. Dr. Einstein indicated that the target date for initiation of treatment is October 1 if the surgeon gives his approval. Preparatory work got underway on September 20 with a further MRI scan and the fabrication of a custom mask that will be used to immobilize my head and target the radiation.

We met with the Clinical Dietician, Kim Ortega. She was very knowledgeable and enthusiastic about working with us to provide the best possible dietary plan. She was aware of Dr. Block and was interested to see his recommendations.

We also met with the social worker, Jamie Hein. We had a wide-ranging discussion with her that covered issues such as available services, contingency planning, as well as mine and Susanne’s emotional and spiritual well-being. She also advised us that Metro General Hospital has a support group for individuals with brain tumors and their care-givers. However, it only meets every few weeks, so we will likely continue other support services as well.

I am continuing with my own personal preparation, with the foundation being spiritual (prayer, meditation, and visualization). Each day, I feel more and more empowered and ready to proceed with the treatment. We held a devotional meeting at our home on the 19^th focused on healing that assisted the process as well. A friend from Michigan, Cheryll Shuette, brought us dinner before the meeting, stayed for the readings and prayers, and provided French Silk pie for dessert for all of us! (Okay, so it wasn’t on the dietician’s list, but it sure was good!)

Ups and Downs September 17 to 18

This was a couple days of Ups and Downs so I’ll share them that way.

UPs

My youngest daughter, Leah, came to visit from Washington, DC. Highlights:

1. She and I spent most of the day on the 17th together…talking, laughing, and sharing what’s going on with us. We went for a walk on Mentor Headlands beach and worked together to get a large UPS shipment prepared and over to the UPS depot.
2. She gave both Susanne and I wonderful massages. She’s just graduated from massage therapy school and passed her national boards so she really knows what she’s doing.
3. She learned how to do my IV connections, which helped free up Susanne from that a bit. And thrilled her to learn something that was part of her Dad’s healthcare.
4. Susanne took the opportunity of Leah being here to retreat to some friends’ home for the better part of a day of vacation. They also made one of their cars available to her as well, which was wonderful.
5. She and Susanne had a wonderful time working together making homemade soup from chicken broth.

I attended my second support group session at the Gathering Place. I’m doing more listening than talking at this point, but am finding the varying experiences useful to hear about.

DOWNs

1. On the 18th, the last piece of my head incision was not looking right to Susanne so we made a trip to the hospital for the nurse to look at it. They found a last lingering piece of suture in place that they removed. We decided this was not a crisis…just a brief urgency…and the suture letting us know it was time to come out so the incision could finish healing.
2. My son David had been having severe headache reactions to the chemotherapy he started a couple weeks ago. When his left eye swelled up, his wife took him to the hospital. He was admitted and immediately went into surgery because they detected a blood clot near his former tumor removal site. He went into surgery late afternoon and was in recovery by about 6:30 PM. At this point, indications are that he came through the surgery well.

September 12 to 16

Since returning from Chicago, I’ve been reading Dr. Bernie Seigel’s "Love, Medicine and Miracles" and have found it to be profoundly useful in guiding my perspective on how to approach the cancer treatment and support activities. Dr. Seigel was a surgeon who came to understand that there is much more to healing than drugs and surgery. He indicates that “The state of the mind changes the state of the body through the central nervous system, the endocrine system, and the immune system…We must learn to give patients the option to participate in recovery from any type of disease”. I find this approach to be very consistent with the Fact-Based Spirit-Guided Path. Much of the focus of his work is with cancer patients and he has established an organization called Exceptional Cancer Patients ECaP that I’m interested in exploring. He indicates “the most important thing is to pick a therapy you believe in and proceed with a positive attitude.” One of the initial activities he recommends doing is making a drawing of yourself, your treatment, your disease and your white blood cells eliminating the disease. I did so and showed a side view of my head with the location where the tumor was removed shown. I depicted the last little pieces of the tumor as red squiggly lines and outlined my plan as follows:

1. Prayer, meditation and visualization to support the white blood cells in creating a barrier around the last little pieces of the tumor and any pieces of it that may have infiltrated the brain beyond the solid tumor (I was visualizing building a cocoon around the tumor during the preparation for the surgery) and invite them to entirely leave my body and minimize or eliminate any potential side effects of the radiation and chemotherapy.
2. Continue to eat good food, take supplements, and participate in exercise to keep me strong and healthy and minimize/eliminate the side effects of the radiation and chemotherapy.
3. Welcome radiation and chemotherapy to neutralize the tumor pieces so that they can be carried away by the white blood cells.
4. Hold as my goal effective and efficient healing with long-term survival and excellent quality of life.

A friend of Susanne’s sent her a wonderful quote that I really like:

"Really life is like riding a wave. If you are a negative thinker, you will only stay at the bottom of that wave. If you think in terms of success, you will ride that wave all the way to the shore and enjoy the marvelous experience. Really, we all have the same difficulties. It is just the way one chooses to handle them that determines how high you are on that wave." - Allen Steble

I learned of a blog written by a women named Krista in Plano, TX who was also diagnosed with GBM (Glioblastoma Multiforme) 21 months ago. I have found it to be very interesting reading her story.

The stitches, from the second surgery, were removed and most of the incision looks to be in excellent shape. There is one corner that is still somewhat problematic and a nurse will look at it again this coming Wednesday.

I have also started to get some additional degree of upward movement in my right foot. This had plateaued for the last several weeks. We have a theory that the anti-inflammatory stuff I started taking, when I sprained the ankle last week, may have contributed to this improvement. Whatever it was, I’m pleased.