Why am I writing this blog?

Euclid (Cleveland), Ohio, United States
Here I share the amazing spiritual journey I began on July 19, 2007. I received the diagnosis of a golf-ball-sized tumor on top of the left parietal lobe (motor functions) of my brain. I had severe symptoms all up and down the right side of my body and had received an MRI scan of my brain. In August 2007, I learned that my diagnosis was a Glioblastoma Multiforme (GBM). This is a common form of fast-growing brain cancer with a challenging prognosis. That's the external story about that moment in time. In the spiritual world I found (actually more like it found me) what I came to call the Fact-Based Spirit-Guided Path, and I began an amazing journey. After October of 2008, I lost the use of my right arm, and in early 2009, my cognitive abilities were struggling, and treatment options ended. My wife, Susanne, then began doing most of the blog postings, with my review and input whenever possible. I continued to apply the Fact-Based Spirit-Guided Path as the adventure continued. My soul then flew to the Kingdom of God on July 1, 2009. Thanks for your interest in my journey. Craig

Susanne's Perspective

During this entire journey, my wife, Susanne, had an entirely different kind of experience. Initially she added comments to some of my posts describing her experience of the moments I discussed and offerred perspectives on our relationship. In the latter stage of this journey, she is writing the blog, as I am no longer able to do so. I am truly delighted that she is doing so. Susanne and I work together as marriage educators/relationship coaches and she has written many books on preparing for and strengthening marriages so you can count on her comments to be insightful and poignant.

Sunday, September 30, 2007

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!

Saturday, September 29, 2007

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 8th 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.

Tuesday, September 25, 2007

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 19th 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!)

Wednesday, September 19, 2007

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.

Sunday, September 16, 2007

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.

Friday, September 14, 2007

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.

Saturday, September 8, 2007

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”.

Thursday, September 6, 2007

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.

Tuesday, September 4, 2007

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…

Saturday, September 1, 2007

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.