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.