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.