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Michelle and I have safely returned from our week of gluttony, consumerism, and celebration in middle America. It was actually a great visit with my family - the highlights being bowling with almost everybody on Thanksgiving/my birthday and karaoke for the 'youngsters' (me being the youngest at 35) on Friday followed by an after-midnight visit to the diner on the edge of Cleveland.

I'm hoping for a mostly uneventful week before plunging back into holiday madness. This is not likely, however, as there are some dire developments on the other side of my family. My mother lives with her oldest sister in a cottage at a senior care facility outside of Ephrata, about 80 miles from Philadelphia. My aunt's health has been failing and she was admitted to the hospital last weekend and was there through the entire week. We're not sure what all is going on, but it's possible that she had a stroke as she spent a few days acting very confused and disoriented, among other symptoms. She is currently improving but it's clear that she'll be need more intensive support than their current arrangement allows when she leaves the hospital.

My mother is neither interested in nor very capable of living by herself in their cottage for the long term. Her physical health is quite good, but she has been developing a dementia, most likely Alzheimer's, over the past decade or so. Ben and I, along with some of our cousins who are taking responsibility for our aunt's care, are trying to figure out the best arrangements for all concerned, so I think there will be some more difficult conversations and decisions this week.

Thanksgiving, birthday, Ohio, Temodar & leukemia

Today is my birthday which is also Thanksgiving this year. As usual, we are at my dad and step-mom's place in Lakewood, Ohio for most of the week. My brother Ben, his girlfriend Kate, and my step-sister Claudia are also here, filling, as best we can, their large house.

This last round of chemo went surprisingly smoothly as did the business trip to California. I'm working a lot less this week of course, especially since I can't connect to the Cisco VPN from my Dad's house. I'm using his AOL browser to make this entry and it's a strange experience for me.

On Monday, I had a consultation with Dr. Jon Glass of the Fox Chase Cancer Center in Philadelphia. I expected him to agree that my treatment was the standard of care and either I should stick with the 12 months or perhaps go for 18 months or two years. Unfortunately, what he said surprised me. He suggested that I consider stopping the Temodar immediately because there's evidence that those who take Temodar can end up getting ALL (Acute Lymphocytic Leukemia). This is the same leukemia I had 20 years ago, which was treated partially with the full brain radiation that probably caused the tumor I'm taking the Temodar for. It's a bizarre Catch-22 style circle of deadly cause and effect.

I had heard some talk of the Temodar-leukemia connection before but had put that off to 'the future'. I hadn't calculated in the fact that Temodar has only been in use for about 7 years, which means, well, the threat of that is closer than I'd thought. I don't think there's numbers associated with this risk, probably only anecdotal evidence and I don't know how seriously to take it. Dr. Glass's suggestion was that I might be at an elevated risk because of my history with the disease, but he didn't have much else to offer me except to 'watch and wait' or to try massive doses of Tamoxifen, a breast cancer drug that has shown some promise with brain tumors. This doesn't sound very good either.

So this information is on the back burner for me during our vacation. I'm waiting until we get home to do more research and contact my treatment 'team' about these ideas. Today, I will enjoy the chilly, sunny day, the food, and my family.

Halfway thru Chemo, biz trip in Cali

I finished my sixth cycle of Chemo on Sunday night and left for San Jose, California on Monday. This round went surprisingly well and I'm feeling pretty good already just 2 days afterwards. Even with the three-hours-delayed all-night flight to San Jose followed by the middle-of-the-night 12-passenger-van-is-the-only-vehicle-left car rental and drive through the drizzle to the hotel, I'm feeling pretty cozy in my room tonight.

I'm here in San Jose to meet some of the people I've been working with at Cisco face-to-face and get some things accomplished that have been difficult to do from across the continent. I have mostly been dreading this trip because of the jetlag, craziness and short time frame, but so far so good...

Quite a week

Well, most of this is not related to my health but it's been quite a week thus far.

First of all, everyone should know I lost my cell phone which means I might not have your phone number any more. I'm borrowing an old phone from a friend while I find the right phone for myself, so please do not call me in the next couple weeks thinking that I now have your number again because I'm not going to keep the phone I'm borrowing. The best would be to email me with your info if you think I don't have it.

Second, my friend with pancreatic cancer passed away on Tuesday morning. It's hardly a surprise and I'm glad that I got to see him resting peacefully on Sunday afternoon, but it is sad nonetheless that the world has lost another beautiful spirit like his. I will, unfortunately, miss the viewing and funeral next Tuesday because I'll be in California for work.

Next, this is a chemo week for me, so, well, I don't feel very good.

Last but not least, there was that whole election thing. I am cautiously optimistic about the changes and I feel like there's some room to breathe again.

That's enough for now.

Race for Hope - Philadelphia

Today, Sunday November 5, 2006, I ran in the Race for Hope, a fundraising event for The Brain Tumor Society here in Philly. 5 km is not very far to run, but since it's been a difficult year and I'm not much of a runner, I was pretty happy to make my time of 28 minutes, 25 seconds. It was a chilly but beautiful morning and we ran along the west side of the Schuylkill River.

I was glad for the chance to raise money for an organization that's been helpful to me and having a fitness goal of sorts has beeen motivating me to keep running this summer. On the other hand, these sort of events where 'survivors' are 'honored' makes me pretty uncomfortable. I know that people like to have a face to put to their cause and I get that, but I feel uncomfortable with either being looked at with pity or as a brave or strong 'survivor'. I'm not sure how else you can look at someone you don't know who is supposed to represent your cause.

In case you're thinking otherwise, I don't view myself (or, necessarily, any of the many other people I know living with cancer) as particularly brave or strong because, really, all most of us are doing is trying to continue to live, like, well, pretty much everybody else. While there's often pain and discomfort associated with both disease and treatment, everyone has pain and discomfort in their lives. How do you live with it?

What's going with me these days, cancer-wise, is continuing chemotherapy. This week I have my sixth cycle of Temodar. I take Temodar (temozolimide) in capsule form for 5 days, 400mg for four days, 340mg for the last day. The side effects are reduced white blood cells (I'm currently a little below normal) and platelets (currently OK). I've also experienced elevated levels of anxiety and fatigue the last days of chemo and the week afterwards.

Nausea is also a very common side effect, so I take 8mg of Zofran each morning I take the Temodar. However, constipation is a side effect of taking Zofran (not everyone seems to experience this), so I include an ever-evolving combination of yoga, herbal teas, and foods that assist elimination. This month, I've purchased Senna tablets as well since the feeling of sludge in my intestines has not really gone away all month.

My neurologist has told me that she recommends continuing Temodar for another 6 months after this cycle. I am considering a second opinion, but I'm guessing that the only difference will be the amount of time on Temodar. I'm getting MRIs every two months and the next will be on Monday, December 11.

More on my mind these days, however, are the conditions of a couple of friends. One is from my support group so I will not mention his name because of confidentiality issues. I can say he is living with pancreatic cancer and he is doing quite poorly - he has been in the hospital for four weeks and when he leaves, he will be in hospice care at home, which usually means he will be treated for pain only. The other is Louise Gillete who is closer to my age and condition - you can read her blog if you like. Her diagnosis is identical to mine, but her tumor is not entirely operable and she is facing a decision about a third operation to remove new growth. Louise has been a sort of mentor in living with a brain tumor for me, giving me valuable advice on treatment, nutrition, finding support, and legal issues.

My New Blog

By popular demand and a semi-latent exhibitionism, I'm starting a new brain tumor blog. News is not as prevalent (thank goodness) as it once was, so I hope to use the blog to reflect on some of my experience this year as well. Share and enjoy.