Media spotlight on Glioblastoma: May 12 to 22

Other than continuing to be pretty tired, things were quiet for me, on the medical front, until the news surfaced about US Senator Ted Kennedy’s brain tumor. As the facts started to come out, it quickly became clear that his tumor type and location was very similar to mine (malignant glioma in the left parietal lobe)…with headlines screaming out at me about his awful prognosis of surviving only a short time. This was a challenge to my serenity around my own survival prognosis.

As the further information became public, it became very clear that a huge difference in his case vs. mine is that his tumor is, apparently, not in an operable location and mine was. What this meant, for me, was that the surgeon was able to remove all visible tumor and the continuation into radiation and chemotherapy, at the recommendation of the doctors, was to take of any tumor matter that was not visible. As of my last MRI in April (8 months after surgery), there is still no visible tumor. I am due for another MRI on May 28.

My son, David, has now reached the conclusion of his chemotherapy for brain cancer and his MRI scans are also clear of visible tumor. His tumor was also located in an operable location, and all visible tumor matter was surgically removed.

There were some wonderful family events over the last week or so:

1. My oldest daughter, Michelle, and her almost 4-year-old daughter, Karida, came to town to bring a friend from Dayton to Cleveland for medical treatment. We had arranged to meet them and David, his wife Christina, and 1 year old son, Aidan. Unbeknownst to us my youngest daughter, Leah, was in Dayton from Washington visiting her sister and surprised us by showing up at lunch, too. It was a wonderful having all three of my children and my two grandchildren together at the same time.

2. Over the weekend we drove to Pennsylvania to stay with my mother. We also saw my sister and her family. We went to church with my mother, and I thanked the congregation for their many prayers for my son and I and gave them an update on how we were doing.

3. My mother-in-law, Kay, arrived on the 22nd to stay a few days.

Unfortunately, I’ve now come down with a cold/cough/virus that has had me miss some work this week. My immune system isn’t fighting off germs like it used to.

Third Round of Chemotherapy: May 3 to May 11

For the first time since last summer, Susanne was able to leave me alone for the weekend. She went to a women’s spiritual retreat in Michigan. I managed my food, rides, and got some home and yard projects done, too.

I ‘ve now completed the third (of six) rounds of chemotherapy. I went to work Monday through Thursday. I’ve pretty well established a routine for the weeks that I take the chemotherapy pills. I lay down for a nap after lunch, take the anti-nausea drug about 1-1/2 hours later, then listen to one of the guided imagery/hypnosis tapes, and then take the pills about 2 hours after eating.

The surgeon did a head check on me on Wednesday…all stable at the moment.

My energy level was pretty good until Friday morning, when I woke up very tired. I didn’t go in to work. Chemo now seems to be messing with the speed of my digestive system…like slowing it way down. Food and pills weren’t helping, so the oncologist prescribed Lactulose. I took one dose and within 2 hours the speed had reversed and was then in high gear. It kind of went back and forth for most of the weekend…boy was that fun.

We are checking out health insurance options for Susanne now that we are on our own for premiums (my part-time hours won’t let the company pay for our coverage). For now, we will just pay the company directly for coverage and it will normalize when I’m back on full-time hours by this fall. It’s a hit to our monthly expenses, but we are figuring out how to make it work. It may be cheaper for Susanne to be on her own policy.

Backtracking a bit in time…We were at the Gathering Place for a memorial service for our dear friend Stephanie Dornbrook on April 27, which was very sad to be at. We also attended both the Cancer Support Group and Spirituality groups this week and found both to be very nourishing and nurturing.

Also backtracking a bit, on the 28th I saw holistic practitioner Ken Koles for an appointment. The primary areas of focus were releasing old emotions from childhood stored in the muscles and mind that appeared to be interfering with healing, and cranio-sacral work to help with the flow of energy from my brain to my body. The sadness from the memorial lifted and my mood generally since the session with Ken has been much uplifted. My balance improved, too.

I was pretty tired through most of the weekend but I did muster enough energy for Susanne and I to celebrate Mother’s Day and go to a local theatre production, on Sunday, of a 1940’s era play called “Born Yesterday” (Garson Kanin). It was fun.We were overdue for a date!

Back on Track: April 15 to May 2

Got a bit behind in updating the blog. Sorry about that!

I did see the infectious disease specialist:

 Based on the test results and his observations, he sees no reason to assume that there is a bone infection and wants Susanne to watch for surface infection and re-culture it if there continues to be signs.

 He prescribed no treatment, either IV or oral antibiotics, and asked that I see him again in 10 days for follow up. If there are further signs of infection, he thinks oral antibiotics would be better than the IV ones.

I also had the follow up visit at which point he indicated that he saw no need for antibiotics and I should continue with the chemotherapy treatments. This is excellent news!

I saw the oncologist and the next round of chemotherapy is scheduled to start May 5. He was interested to hear that 3 different intuitive healing type folks that I’ve seen in the last several months find that the chemotherapy drug, Temodar, that I’m using shows to be beneficial to me. This is very unusual...but who ever said I was normal.

Fatigue continues to be a constant challenge. My sense is that the fatique is more a result of the increased dosage of the anti-seizure medication than the chemotherapy drug. I’ve not had the energy to get up and go to the YMCA in the mornings with Susanne. On days without medical appointments or treatments, I’m pushing through about 3-4 hours of work in the morning, coming home very tired, eating lunch, and then sleeping a couple of hours. Usually I have enough ability to then concentrate for another 1-2 hours of work. Susanne and I are still consistently going for a walk, which helps to keep my red blood cell counts up. Our evening activities have decreased, although being home is then allowing us to watch old I Love Lucy TV videos, which consistently make us laugh. Great for stress relief and healing!

Chemo Restart and Further Challenges: April 7 to 14

 The Chemotherapy was finally restarted Monday April 7, after a two-month hold due to the infection that was operated on at the end of January.

 My body was depleted from two weeks of a cough and cold, so I immediately had nausea challenges. So, even though I didn’t need it before, I used anti-nausea medication with each chemo dose this time.

 My energy level was strong enough that I worked my normal half day on Monday, Tuesday, and Wednesday. I was really dragging by Thursday so only went into the office for a couple of hours. On Friday and Saturday, I spent most of the day in bed. By Sunday, my energy was recovering and was pretty good on Monday.

 Unfortunately a further episode with infection on my healed incision cropped up over the weekend. We consulted with the Neurosurgical residentwho was on call. We expressed a high degree of reluctance to come into the ER, given the just completed round of chemo and my depleted immune system. He agreed, provided us with maintenance instructions, and indicated that we should contact the Neurosurgeon first thing Monday morning.

 When we contacted the Neurosurgeon, he immediately made time in his schedule for us. He examined the wound and expressed concern that the infection might be in the bone since it keeps coming back. He took a culture of it and bloodwork. I’ve been referred to an infectious disease specialist (that’s what they call the folks that administer the antibiotics at this hospital), and we'll see him on Friday morning. The Neurosurgeon indicated that further surgery may be indicated, too.

Prayers would be welcome for outcome of the testing and remedying the infection.

End of Waiting: March 20 to April 6

Progress on the medical front:

• Another MRI was done March 31, which showed little change since the Feb. 28 one. The oncologist indicated that this means the shadow showing up on the MRI is likely radiation after-effects NOT tumor re-growth….YEAH!
• The Neurosurgeon indicated that the January incision is finally healed and took out the last of the stitches.
• The oncologist also took blood work and indicated that the chemotherapy could restart on April 7.
• The steroids have now stopped, so the wired feeling (see previous post) is gone. I’m feeling tired and foggy a lot now, which I’m attributing to the anti-seizure medication.
• We met with a counselor at The Gathering Place when my tension and anxiety peaked, and we have started back attending more of the weekly support groups there.
• Also had very good sessions with the medical intuitive and Chi-Gong healers that we have seen before. The medical intuitive scanned my whole body and found no cancer colonies (tumors) anywhere. She did however note some stray cancer cells are at times appearing in both the left hemisphere of my brain and pancreas. We are doing all that we can to enhance the health of my pancreas as a result. As part of that, she also indicated that I should stay away from sugar and use agave as a sweetener and continue to keep up my protein intake, particularly from non-meat sources. She also indicated that the particular chemotherapy drug I am using, Temodar, is well suited for me and that I will benefit from using it.

As a wonderful ending to all this waiting/uncertainty, Susanne and I spent 3 days at the Mind Body Wellness Center attending an ECaP (Exceptional Cancer Patients) retreat. It was a marvelous and refreshing time. Good for getting us mentally and emotionally back on track. I found it particularly refreshing to be with other cancer patients that share the positive/spiritual perspective I’ve chosen to take regarding this journey. The high point for me was the closing ceremony where we each chose photos that spoke to us of our journey. The two photos in the middle are the ones Susanne and I chose.

We also participated in an annual event called Black Marriage Day. This is a national event that features the renewal of wedding vows. Close friends of ours were sponsoring the first time this has been held in Cleveland. It was a very uplifting and moving event, and Susanne and I participated in the vow renewal with the other couples. We also had a Marriage Transformation booth.

Further Waiting: March 10 to 19

The last few weeks has been an exercise in patience, to say the least. The doctors are not sure if the seizure activity was an after-effect of the radiation or indication of tumor re-growth. Because the surgery from January is still not finished healing, the chemotherapy cannot be restarted yet. The healing is slow because my scalp is fragile from the radiation treatments and there was abscess activity underneath the incision. And not being able to drive and arranging rides again.….grrrr!

We saw the surgeon March 19. There were still 4 stitches left in place. He removed 2 of them and is confident that he can remove the final stitches in 2 weeks (on April 2) and release my treatment to the oncologist. This would mean that the chemotherapy could resume on April 7. The surgeon also had a blood sample taken for analysis and ordered an MRI for March 31. He indicated that the oncologist would use the MRI in deciding the chemotherapy dosage. It is becoming clear to us that there is increasing concern that tumor re- growth may be occurring, which would not be good news. As we understand it at this phase of the treatment, MRIs are done normally every 3 months. The MRI the week of March 31 will be the third in a 6-week period. The bloodwork shows that finally my white and red blood cell counts are rebounding. My platelet count is dropping, though, so the doctors will carefully watch that.!

With the increased level of steroids and anti-seizure medication, I’ve been feeling wired (up a fair amount in the middle of the night and somewhat hyper), tired (I’m taking more naps), and foggy (I have some difficulty thinking clearly and staying focused on what I’m doing). I discussed this with the surgeon and he prescribed a ramp-down dose of the steroids to get me back off them. The dosage on the anti-seizure drug cannot be changed, and I understand it has fewer side effects than other drug choices.!

On March 11 I visited a new surgeon, who unfortunately confirmed that I’ve got an inguinal hernia that will need surgery. It’s not an emergency at the moment, so it will be delayed so that chemotherapy can re-start. It’s uncomfortable and I have to be careful about lifting and moving. God is certainly testing me with loss of independence!!

On the family side of things, we held a joyous first birthday party for my grandson Aidan, who is a bouncy, happy, healthy 24-pounder. My 3-1/2 year old granddaughter Karida came to town from Dayton with her parents (Michelle & Hooman) for the weekend, and my other daughter (Leah) drove in from Washington, DC and stayed until Wednesday. It was a wonderful time. Leah set up her massage table and worked on many family members, including Susanne and me.!

On the friend side of things, I was able to attend the second session of the Reflections on the Life of the Spirit course at our home, yay! The focus this week was on honesty and truthfulness. That evening (the night before the birthday party) we hosted 25 friends for a dinner (with help!). They were mostly people who have been sharing the Bahá’í Faith with interested people in Greater Cleveland along with our arriving family members. We also attended the monthly Spirituality Group at The Gathering Place, which was a wonderful sharing and meditative session.

In and Out Out of the Hospital...again: February 28 to March 9

I returned home on Monday March 3...YEAH!

I was connected to an EEG for 2 days, that also captured video footage of me. That was a lot of fun…not! I was trapped in the bed most of the time as a result. A new much higher dosage of anti-seizure medication (Keppra), that I’ve been on a low dosage of since the second surgery in August, was found to apparently eliminate all the seizure activity. It has also apparently significantly reduced the long-term numbness I've had in the right leg and foot. They finally removed the leads on Sunday but wanted me to stay an additional day for further observation, medication adjustments, and an additional MRI.

The seizure-specialist neurologist was initially puzzled at my seizures, because I showed some ability to control them with visualization and touch, something that is very unusual for seizures. The EEG definitely showed seizure activity, however. The conclusion was that the activity was very focused in the area where the tumor was removed and largely occurring in sensory areas rather than motor areas. He termed them “sensory seizures”. He has decided that I should not drive for the next two-three months and then be re-evaluated. He wants to be sure that I am stabilized and not in danger of losing control of leg and arm movements, something that could be hazardous behind the wheel. So, while not unexpected, it's a disappointment (actually I’m pretty annoyed and frustrated!). I’ve really enjoyed driving again the last six weeks. It’s very hard to repeatedly lose my independence.

It is not clear whether the root cause of the seizure activity is swelling from the radiation, cell/nerve damage resulting from the radiation, or tumor re-growth. Without surgery, it’s not possible to be absolutely certain. Just part of the nature of this condition. The doctors have prescribed a low dose of steroids to bring the swelling down. Another MRI will be done in a few weeks to monitor the situation.

I began noticing a few days after discharge that the leg numbness was coming back. We recalled that the same pattern had occurred with the January hospitalization and discharge. Susanne observed that a common thread between the two occurrences was that, while I was in the hospital, I was not taking the vitamins and supplements, just the prescription drugs. We first thought that I should go off all the vitamins and supplements, see if the numbness went away, and then step-by-step reintroduce them. Then Susanne had a better thought. About a year and half ago she experienced Vitamin B6 overdose which had symptoms of numbness. I’ve been taking a fairly high dose of Vitamin B6 since December at the doctors’ recommendation to attempt to reduce the neuropathy/numbness symptoms. We decided to see what happened if I just stopped the B6…amazingly the numbness was substantially reduced within less than a day. That vitamin is now off my chart. This stuff can just get so complicated when one same substance can both reduce and cause numbness!!!

I reached a major milestone at Toastmasters this week. The first sequence is completing 10 prepared speeches with specific objectives for each. I presented my 10th speech entitled It’s Your Choice. The objective was to inspire. It was clear from the audience reaction that I had done so. It was great fun.

While I was hooked up the EEG equipment, on Saturday, Susanne started a wonderful weekly study group on a book called “Reflections on the Life of the Spirit”. I felt like I was there in spirit, maybe in an enhanced way from the EEG leads all over my head…who knows. I plan to be at future ones in person!