Chemo is Over!

I finished my last round of Temodar in May. I'm now a little over a month beyond my last chemo treatment and feeling really good. I'm running regularly, my hair has filled in pretty well, I'm working as full time as ever, and I'm enjoying summer once again.

I went to a Brain Tumor Society sponsored conference in New York last weekend and learned more about the present and future of treatment. It seems like targeted treatments (tumor-specific chemotherapy that target specific receptors in the tumor) are slowly seeping in to brain tumor treatment, but that surgery, radiation, and Temodar are still the best western medicine has to offer.

I found an interesting statistic that I'm trying to get more information on. Dr. Rose Lai, an epidemiologist from Columbia Univserity spoke briefly on the causes of brain tumors and mentioned that 17% of Acute Lymphocytic Leukemia (ALL) patients that received full brain radiation were later diagnosed with some sort of glioma. This seems like a very high number to me, so I want to find out about the data behind it. I'm also interested in meeting some of the other people out there in a similar situation.

Many months...

It's been quite a while since I've posted. Mostly that's because there's no real news in my life tumor-wise, and no news is good news. I've finished my 11th cycle of Temodar and in a few weeks will be on my last. After that, it's watch and wait.

Lots of non-cancer stuff has been going on in my life - I've been to California twice this year and will go again in the middle of May. It's been a combination of work and pleasure both times. I'm enjoying work and doing a lot of it these days. I've started to work with Tim on a project separate from Cisco and it's nice to have even this slight variation to my working situation.

Michelle and I recently adopted some kittens pictured here. Their names are Gilgamesh and Enkidu. Unlike the story, they are actually brothers and also unlike the story, they are kittens.

Spring is springing, finally. I've hung my hammock in the back and planted what I hope is to be a vegetable garden. The flowers got all confused between the winter being late in coming and later in going.

Today, April 22, I ran in the Penn Relay Distance Classic 5K. This was part of The Wellness Community's Strides for Hope team and I happily both made my fund-raising goal and improved on my 5K time from last fall by a full minute.

Michelle and I are working on getting a house and a baby. Neither have been very successful yet and both are somewhat complicated by the brain tumor and treatment. I think we will find the answers we need to these questions this year.

End of Cycle blues

I may have mentioned this already, but since about September 2006 I've begun to experience an unusual (for me) amount of anxiety towards the end of my monthly Temodar cycle. Today, January 6, 2007 is day 24 (out of 28) of my 7th cycle of Temodar. I've been sleeping peacefully each night this week and then tonight I'm wide awake at 3AM. I tried meditating for a while, got back in bed, but my mind was racing between all sorts of things that could go wrong in my life. All in all, this isn't so strange or awful, but it's so predictable that I can't help associating it with the Temodar cycle. When I had my one-week reprieve from the cycle last month I felt these feelings melt away almost immediately. I am looking forward to May and leaving Temodar behind.

Staying on chemo, enjoying winter

Currently on my 4th day of the 7th cycle of Temodar chemotherapy. Feel generally OK, a little fatigue, a little constipation, insides feeling kinds sludgy.

I spoke with my neurologist about 'pausing' chemo for a few months while I enjoyed my health during the winter. She didn't go for the 'taking a break' approach but said that 'it is not unreasonable to stop' the Temodar at six months, since that's the actual standard of treatment for glioma. She recommended continuing for another six months, however, because their trials with anaplastic (grade III) gliomas indicate that 12-14 months of Temodar is more effective for this type of tumor. She also said that she has several patients with similar tumors that are doing fine who stopped after 6 months of Temodar, so... She didn't have anything to add to the Temodar v. leukemia issue, only that 'all chemotherapy agents are toxic and have side effects', so... Well, Michelle and I discussed it and then called in Tim and Charlotte to confer Monday evening and I finally decided to continue with chemotherapy as the best path for my long term health despite the risks and discomfort.

In other news, I went camping in the Catskills with Tim and Eric last weekend - hopefully there will be pictures soon. It was the coldest few days of the winter so far, and within the first few hours of arriving, I was convinced I was not going to make it. But after warming up in the car for a while, I decided it was worth the adventure and we all ended up having a great time.

We camped near Notch Lake and hiked up Hunter Mountain on Saturday - in a little over 2 miles we went up about 1500 ft. Luckily, Tim voluntarily carried the food and a camping stove up the hill so we had hot noodle soup with salami and cheese in the lean-to near the peak, pictured above. By the time we came down, most of the ice we'd fretted over going up had melted away. We then demonstrated the depth of science that goes into making a Duraflame-style log by warming up to its amazing heat.

Sunday we packed up, stopped by Sweet Sue's in Phoenicia for breakfast - we were all amazed at the people with their down jackets on inside the restaurant at that point. After the two hour drive back to New York City, we went to the Russian baths on the Lower East Side to wash away two days worth of serious stink. Three days is not very long, but when its too cold to touch skin with water and sweat builds up from the hot sleeping bags and the hiking, well, we all felt much better and enjoyed each others company more afterwards.

This week, we leave for Texas for Christmas and such. We'll be staying at Michelle's mom's place in Corpus Christi. Since it got warmer again here, maybe it won't be such a big difference, but it will still be a nice change of pace. I'll probably write again from there... Happy Holidays and all!

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.