Chicago September 9 to 11

On Sunday we traveled to Chicago for our visit to the Block Integrative Medical Center in Evanston, Illinois.

Around the visit, a number of other events took place:

1. Before departing on our flight at 12:30 PM, Rick Eastburn picked us up and took us to the Sunday morning breakfast. This is the same folks that brought breakfast to our house on August 12. It was a wonderful time. Rick then drove us to the airport.
2. We had dinner with my good friend, Yael Wurmfeld, on Sunday. I have known Yael since 1974 when she and I and my first wife all became close friends at Green Acre Bahá’í School. Yael has gone through numerous very serious illnesses in the last 20 years but continues to have a very positive outlook on life.
3. We visited and prayed at the Baha'i House of Worship in Wilmette on Monday afternoon. We also saw our friend Jessica Gaines, who currently works there.
4. We also stopped by the Bahá’í National Center to pick up our good friend Vicki Carl for dinner on Monday. Vicki and I went to college together and both accepted the Bahá’í Faith in 1970/71. Susanne and Vicki have been good friends since the early 1980’s.

Because of my leg brace/cane, I qualified for wheel chair assistance at the airport, which made the security delay significantly less and eased the journey to the gate. It was kind of fun to get wheeled around. We stayed with Dave and Dixie Rouleau, Bahá’í friends in Evanston. That was a blessing, as it made it easy to keep doing my IV’s.

We were at the Block Center from 10 AM to 3:30 PM on Monday and then from 9 AM to 1 PM on Tuesday. During that time, we had a series of meetings:

1. Two different medical doctors met with us and indicated that they agreed with the conventional treatment protocol outlined on Friday by my oncologist. They also said that additional effectiveness could be obtained by diet, supplements, exercise, and attention to emotional/spiritual needs.
2. They took blood samples in order to tailor supplements to my body chemistry. Also part of this testing is saliva samples to be taken at 3 specific times during a 24 hour period.
3. We were given an initial list of recommended supplements that will be fine-tuned when the blood work and saliva testing is complete. We opted to purchase some of the supplements and do some further research on others. We are also reviewing the recommended supplements with our oncologist.
4. A dietician met with us and oriented us to a recommended diet, which is a fairly rigorous mostly vegetarian diet.
5. A physical therapist met with us and provided guidance regarding the ankle sprain from last week and an exercise regimen to further strengthen my right leg.
6. A psychologist met with us to explore our emotional/spiritual state and needs.

All in all, it was a very full couple of days and we are still processing what we heard. Our friend (and part-time Marriage Transformation worker) Joyce Ashman picked us up at the airport.

Saturday September 8

Saturday night was my first opportunity to share the “Three Tools of Healing” dramatic presentation with a group of people. Every Saturday night, Emma Jackson hosts a Fireside (informal meeting for discussion about the Bahá’í Faith) at her home. I was the speaker this week. Although the space was a little crowded for how I’ve envisioned doing the presentation, it went very well. Based on several conversations I had afterwards, hearts were touched.

September 5, 6 and 7

On Thursday I was walking around upstairs without the brace, carrying my IV pole, Susanne was talking to me, and I kept walking, so I got a bit distracted, didn’t lift my leg high enough, and fell down. Thankfully not down the stairs! I sprained my right ankle and bent the IV pole up pretty bad. I had the folks at rehab that afternoon check the ankle. They didn’t see any major reason for concern, but we temporarily shifted the therapy focus from the ankle to the rest of my right leg, which is also weak, to give the ankle a rest. It was recommended that I return to using the brace to give the ankle a rest. I was able to straighten out the IV pole so that it is both usable and still collapses for transport.

At rehab, they also did a reassessment of my progress. They noted good progress in regaining strength in my right leg and my mobility skills.

On Thursday we went to Toastmasters and I gave a prepared speech. What I chose to do was entitled “Tips for the Patient and Patient-Visitor”. Obviously this was based out of the Fact-Based Spirit-Guided Path and was very well received. What I pointed out was that, for the patient it is critical that they get clear on and stayed focused on the facts regarding their particular situation. This could call for in-depth conversation with the doctor. The facts can be an assistance to reducing/avoiding worry, anxiety, and specultation and help the patient to be open to the loving support that visitors would bring. For the patient -visitor, there are several tips:

• Before entering the patients room, stop and clear away any of the frustrations of your daily life.
• Create a space for loving support for the patient.
• Listen to what the patient has to say and respond accordingly.
• Attempt to ascertain the emotional level the patient is at and, if possible match that.
• If you are able to do anything to elevate that level a little bit, do so.
• Help the patient to get clear on what the facts are about their situation.
• Do not bring in information regarding negative experiences others may have had with similar diagnosis.

We finalized plans to be at the Block Integrative Medical Center in Evanston, IL on September 10 and 11. They do extensive work with integrating conventional treatment with alternative and dietary aspects of healing.

On Friday, we had our first meeting with the Oncologist Dr. Nock. We shared our overall approach as follows:

• Looking to establish partnership with and between the doctors providing treatment
• Not owning that I have cancer but acknowledging a diagnosis of Glioblastoma (see post for Sept 3/4) and that there is treatment indicated as a result.
• Choosing not to focus on the dismal survival statistics for Glioblastoma but looking for the best approach for long-term quality of life.
• Coordination with alternative medicine and diet for maintaining strength and immune system integrity.

We found his attitude to be very positive and honest, and he was very supportive of our approach. He indicated that he would be pleased to be in communication with Dr. Block to coordinate their recommendations. He explained the proposed treatment as follows:

• The first phase of the treatment would be radiation combined with a chemotherapy that has been found to be the most effective with Glioblastoma (Temazolimide/Temador).
• There will be a break of about 1 month.
• This will be followed by 1 year of the chemotherapy drug taken 1 week per month

Our next step is meeting with the radiologist Dr. Einstein on September 19. We will meet with Dr. Nock again on September 20 to review the recommendations from Dr. Block and Dr. Einstein and do preliminary bloodwork. Drs. Einstein and Nock are the same doctors with whom my son is working.

Our friends John and Laurie Cunningham have been hosting a meditation session at their home on the 1st and 3rd Friday evening of each month. We decided to attend and it was a wonderful time focused on the theme of “unity”.

Monday September 3 and Tuesday September 4

The leakage of blood and other fluid from the head incision continued throughout Monday and during the night, much to Susanne’s consternation. The home visiting nurse instructed her to put a thick pad on my head and tie it with a strip of gauze tied under my chin. Quite a fashion statement! Tuesday morning we called the hospital and got an appointment to see the surgical nurse. She looked at the incision, noted the presence of some cysts that she pressed on to discharge what she called serosanguinous fluid (containing purulent and bloody material), called in one of the residents for an opinion, and they concluded that there was no infection and that we need not be concerned. Within a couple of hours, all drainage had stopped. This was all a huge relief.

The nurse also indicated that I would be on the intravenous antibiotics for a minimum of 4 weeks (darn!!) and that initial discussion with the oncologist should take place soon. She was surprised that we had not already had this conversation because the Dr Sloan had already advised the oncologist, Dr. Einstein of my case. I was also advised that I could resume the out-patient rehab work and that they would be faxing the necessary paperwork.

On Tuesday, I returned to outpatient rehab and had another vigorous session focused on the right front shin muscle and increasing the overall strength of the right leg. I’m walking around the house without either the cane or foot/leg brace though. I just have to be careful to lift up my foot high enough that it doesn’t drag. I wear the brace and take my cane out of the house…although I keep forgetting about the cane and walking off without it when we are out.

I keep reflecting on how to approach this experience, and I’m consciously choosing to speak of having a diagnosis of Glioblastoma instead of stating that I “have” Glioblastoma or “have” cancer. The “have” becomes owning it, which can lead to being obsessed with or consumed by its presence. Having a diagnosis is a statement of fact that contains no ownership but is also not denial. I must acknowledge Hedy Schleifer for making this distinction clear to me in “Sacred Choices-Hedy’s Story of her Cellular Challenge with Breast Cancer” by Judie Chiappone [Note: She has great marriage-support materials too!].

On Tuesday evening, for the first time we attended the support groups (one for the patient and the other for family members) at the Gathering Place. In my introduction, I used the diagnosis vs. ownership terminology and it was immediately meaningful to many of the group members. I indicated to Susanne that it was a very good group, and I will find it to be a good place to find support in the future as things get tough. Susanne observed that in the last 6 weeks, I’ve gone through brain surgery, been diagnosed with Glioblastoma, returned to the hospital for repeat surgery due to infection, lost my driving privileges for 6 months, and my near-term potential for returning to work is low. Given all that, she was very surprised that I didn’t see reason for needing support right now. I agreed that I’d look at that and see what made sense to me for next week.

Friday August 31 to Sunday September 2

Over the past 3 days, we’ve had several visitors and in between, launched into extensive reading of the cancer treatment resources and planning what we’re going to do. In addition, the twice daily IV infusions are now going smoothly with my handling all the setup procedures and Susanne doing the attaching, the purge syringes, and the IV connections to the PICC tube that was installed.

On Friday, Ruth Twaddell came by and did several errands and prepared a wonderful dinner for us. On Saturday, her husband Ban came by and washed, vacuumed, and waxed our car. We feel so blessed to have such wonderful friends.

On Sunday, my mother, sister, and brother-in-law came from Pennsylvania. They brought lunch, and we spent about 4 hours together.

1. My mother really needed to see me to assure herself that I was OK. One of the resources we had obtained was a large document entitled the “Moss Report on Adult Brain Cancer”. I found the introductory letter so positive and inspiring that I read part of it to her and gave her a copy. It became clear in talking with my mother that there was confusion and extra consternation in the family about the Stage/Grade of my diagnosis. What the doctors have indicated is that my diagnosis is a Grade IV tumor, based on the high level of cancerous activity in what was removed. They also indicated that classification of Stage, where Stage IV means that cancers have often metastasized, or spread to other organs or throughout the body, does NOT apply my type of brain tumor.
2. My sister is a healing arts practitioner (homeopathy, ortho-bionomy) so we had extensive conversation with her about the researching we were doing.
3. My brother-in-law likes to be active, so he gladly fixed our guestroom door so it closes and trimmed a tree for us..

In the researching/planning we did the following:

1. As you can imagine, we have accumulated a large amount of information from various people. We reviewed all of it and created classifications of 1) Diet, 2) Complimentary Alternative Medicine (CAM), and 3) General Glioblastoma. This helped to bring some order to an overwhelming pile of paper.
2. We purchased the Moss Report for Glioblastome Multiforme, as mentioned above. This is a 500 page report that summarizes and evaluates the conventional treatment approaches as well as the alternative treatment and support approaches.
3. We had a conversation with Susanne’s long-time friend, Brenda Maxwell Zagrafov, who is a family physician and incorporates a significant amount of alternative medicines in her practice. A key understanding I came away from this conversation with is a critical proviso when looking at research reports from conventional and alternative sources. Her observation is that all conventional research results will be stated in the most conservative manner possible and will generally also make very clear the side effects and warnings. The alternative research results will not necessarily be under such constraints and are generally far less researched. This came up because some of our initial reading was making us very leery of the conventional approaches. Brenda’s view is that in the future the natural approaches will be dominant, but for now in our imperfect world, often the best treatments available are difficult ones, such as chemotherapy and radiation. And…whatever we can do to pair alternative and nutritional care with these, is wonderful.
4. We scheduled a 2-day visit at the Block Integrative Medical Center in Evanston, IL We expect to get second opinion from them on the appropriate treatment as well as guidance on the supplemental/dietary approach to use.

Unfortunately, shortly before bed my incision sprung a leak of sorts, putting Susanne into more intense nursing mode than she was prepared for. The saga of challenges with my head continues…

Back in the Hospital

Unfortunately by Monday morning the incision was looking no better and I was having constant headaches so, at the recommendation of our GP, we headed back to the Emergency Room Monday morning…rats!!! Once again we learned that being a patient means having patience…nine hours there before they got me into a room on the neurological ward, a lot of it without food or medicine. Actually, it was a bit strange to be set up in one of the rooms on the ward that my son stayed in back in March for his tumor removal.

I had noted in my post for August 24, “I promised Susanne that if I was feeling sad or depressed or had any other negative emotions that I would share them with her and not just deny them. One of the concerns she’s expressed about the fact-based spirit-guided path is that, from her perspective, it appears to be an avoidance of any emotions besides happiness.” Well she got to hear me being not so happy and accepting of what was going on…particularly fasting for 24 hours and then discomfort and pain after the surgery, since they tightened my scalp up even more. The first approach of pain medications was not working either. I was also pretty straightforward with most of the folks that called me: I was grumpy! It was very different going through surgery and recovery without steroids influencing the experience too. Wednesday night they changed the pain-meds so by Thursday morning I was feeling better and was discharged Thursday afternoon.

It was interesting to note that, for this follow-up surgery they shaved a larger area and it’s now very clear that the letter “C” for “Craig” is carved on my head and will be the shape of the scar that is left. You may not want to look at this picture if the sight of blood makes you queasy. In this second surgery, they had to pull my scalp in even tighter so the pain is more present than from the initial surgery. Of course, I’m also not on steroids. After the initial surgery, I needed only an occasional Tylenol. This time, I need real pain medication. The first one they started me on didn’t work so they had to switch to an alternative (Darviset). I’m continuing to take it, as needed, and trying to keep the intervals as long as possible.

There were several things that got cancelled due to this further hospital adventure. By the way, I’ve had people comment on my use of the word adventure vs. adversity or ordeal. What I’m seeing is that the choice of the word used to describe something like this contributes to how it occurs. I am consciously choosing to call the further hospital stay and the further treatments called for by the pathology report “further adventures” instead of more adversity or ordeal. And…it was a challenge when this adventure cancelled these plans for the week:

1. I was to participate in a Euclid City Diversity Team meeting on Tuesday morning.
2. Our first cancer support group sessions for patients and family members at The Gathering Place were to happen on Tuesday evening.
3. I had placed a call to a hot air balloon ride provider over the weekend for us to be doing a dawn ride on Thursday or Friday.
4. We were to have a devotional prayer meeting at our home Wednesday evening where friends were coming to pray with us for healing.
5. I was to participate in a Toastmaster’s contest on Thursday.
6. My first “Three Tools of Healing” dramatic presentation was to be Friday, August 31 at Barbara Baumgartner’s home. I was really looking forward to this and had already purchased a wireless microphone to plug into her sound system. Up until Thursday morning, when it became clear to us that the IV infusions every 12 hours were going to be time consuming, we were still considering this a go. The first “Three Tools of Healing” dramatic presentation is now going to be Saturday, September 8 at Emma Jackson’s.
7. I had to miss three of my outpatient rehabilitation sessions when they were just getting fully going.

I was very disappointed to miss these activities. It is important to me to be leading as normal a life as I can while I’m healing.

Saturday August 25 and Sunday August 26

My daughter Michelle and her husband Hooman and 3-year-old daughter Karida arrived late Friday night for the weekend. We spent the weekend mostly relaxing, talking with them, and playing with Karida. Although they have visited often, this visit seemed to have an underlying layer of concern about David and I. It was a wonderful and appreciated visit. Michelle and I spoke about the potential for getting genetic cancer counseling for her and Leah.

For Saturday lunch we went to Chagrin Falls to have lunch with my great-aunt, Jean Taber, and also visited with Ruth Twaddell. In preparing for dinner, Karida and I had a wonderful time peeling corn for dinner.

On Sunday my son David, Christina, and Aidan came over for awhile. Lots of kid talk and playing and a photo of the two grandchildren with their parents.

Throughout the weekend, I was trying to be very conscious of Susanne’s comment from the day before that I “was still going faster (movement and speech sometimes) than before the surgery.” I did see examples of this am making a commitment to myself that I will work to be much more clear and deliberate in my movements and speech. That’s where I really want to be.