Roller Coaster: May 23 to 30

We have felt like we were on an emotional roller coaster this week.

•  We had a delightful weekend with Susanne’s mother, who headed back to Toronto On Wednesday, May 28.
•  Wednesday afternoon, I had an MRI brain scan. It showed some significant changes since the one two months ago.
•  That same afternoon, the surgeon reviewed the scans with us and called in the hematology-oncologist to review them, too. The surgeon’s opinion is that there are signs of tumor re-growing. YUCK! The oncologist was less pessimistic though.
•  On Thursday, we reviewed the images with the radiology-oncologist, and his opinion is that the hole/cyst that was left after the tumor removal surgery last summer has simply collapsed, and the brain lobe has rearranged itself somewhat. The dead/unhealthy cells that were around the edge of the hole/cyst have now merged and changed shape. He doesn’t think there are signs of tumor re-growth present. YEAH!
•  The radiology-oncologist was apologetic about us being put in the middle of the doctors’ differences of opinion. He indicated that normally the doctors confer together and decide on what information should be provided to the patient.
•  The team will review the images at the Tumor Board inter-disciplinary team meeting next week and see if they can come to a unified conclusion. [We are, obviously, voting for the positive report! And, having one less hole in my head sounds like a good thing, right?!] .
•  It is my fact-based spirit-guided opinion that the radiology-oncologist is more skilled at MRI interpretation and his interpretation is correct…no tumor re-growth evident.
•  All three of the doctors concurred that there were signs of some further neurological impairment, particularly in my leg, and their recommendation to the neurologist is that I not return to driving at this time. YUCK!
•  One of the outcomes of the brain moving around, or whatever is happening, is that I once again experienced some mild spasming/seizure activity, on Friday, in my right arm, right leg, and across my stomach muscles. Blessedly the doctors didn’t hospitalize me, but they have added a new anti-seizure drug to my array of pills (Dilantin). We’ll see how it works over the weekend, and then I see the seizure neurologist on Monday. Right now it is causing some dizziness and fatigue. So, my cane is back out for walking outside of the house.
•  In the meantime, my bloodwork done on Wednesday shows many low counts, but it’s just healthy enough that the oncologist has approved chemo for next week. The doctors really want it to go forward.
•  The spot on the top of my head continues to struggle with healing as well. It blistered up again last weekend and popped open. The MRI images almost look as if some of the cyst collapsing in the brain could have been part of the blistering and leaking on the surface. But, that’s speculation at the moment. We are still applying Bacitracin daily to ward off infection. And, there are no signs of infection present.

On the better news front, I was able to work 16 hours this week even with the medical trips and losing Monday to the Memorial Day holiday, we had dinner with my Aunt Jean on Friday, and Susanne finished a new book this week, Happy at Home, Happy at Work. We are continuing to be active in Toastmasters, in the community, and with friends and relatives. We are managing to do almost daily walks and frequent Chi Qong exercise routines, too.

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!