My Brain Tumor

My Summer Staycation

2008-07-21T19:34:00.003-04:00

So, between gas prices, house projects, taxes, and having to find a new job, we haven't gotten out of town too much this summer...

We both stumbled (at different times) on poison ivy that was hiding in the hedge in the front yard. I now have a plan of attack, though, and was able to make a significant dent in it this week without ill effects despite the heat.

Michelle and I escaped to Ricketts Glen State Park early in the summer for a weekend and, more recently, we got to spend a long weekend on the Chesapeake Bay shore with family.

The picture is me all dressed up for a job interview. I had a few interviews and I've signed on with the privately-held company named Aria Systems in Media, PA as a 'Senior PHP Developer and Architect', starting in two weeks. This is a huge change for me and I'm sad to be leaving my free-wheelin' free-lancin' work with Lexalytics but I think it will be an excellent opportunity for growth.

If you are paying attention, you'll see that my right eye looks kinda strange in this picture. I'm not winking. I actually can't open my right eye entirely. This has been slowly getting worse over the summer and we got a special appointment with Dr. Rosenfeld three weeks ago. Two weeks ago I got an MRI and a spinal tap and it turns out there's some sort of growth in my orbit - this is what the doctors call the eye socket. This is unexpected news and as far as I'm concerned, completely bad.

I've spoken with Dr. Glass at Jefferson University Hospital and Dr. Judy at HUP and they both agreed that a biopsy is the next step because no one can tell if its a recurrence or something new. So, I went to the Scheie (pronounced 'Shay') Eye Institute today and five hours later, I have a biopsy scheduled for Wednesday, July 23.

The reason I'm going to a new facility and new surgeon instead of Dr. Judy is that Judy, skilled as he is, would have to go through my cranium in order to get to my eye. Dr. Roberta Gausus, orbital specialist, will biopsy and 'de-bulk' the growth (which she did not call a tumor, by the way) as an outpatient procedure, so I'll be in my own bed on Wednesday night. We should have the pathology report sometime next week.

Not Dead Yet

2008-03-03T10:23:00.004-05:00

Long time, no blog.

I am still alive and well and living in Philadelphia. Michelle and I bought a house in the northwestern reaches of the city and I'm busy with work trying to pay for it and working on it, trying to make it pay for itself.

The kittens are now a year old and have pretty much adjusted to their new home. They are not allowed outside here because our (larger) yard is not fenced in.

There's no baby news yet, thanks for asking.

I went to see Dr. Judy last week - he told me 'the tumor should be back by now - you should be dead.' But I'm not, so that's good. He feels I'm past the critical point - it's not over and never will be, but, statistically at least, I've gotten a lot farther than most. So take a quiet moment to consider those less fortunate. Thank you - now, let's party!

Milestone MRI

2007-08-06T10:09:00.002-04:00

A week ago, Monday, July 30, 2007, I had my first post-treatment MRI, which was clear. This means I've made it to 1 ½ years post-surgery without any sign of tumor. I haven't heard anyone mention the term 'remission' and I'm not sure that it's used for brain tumors, but I'm feeling some distance from having a tumor and this is great news for me. Dr. Rosenfeld wants to keep getting MRIs every two months for the first six months after treatment - that means through November 2007, then space them out to three months, and more. The catch is the insurance coverage. So far, so good for me, but she told me sometimes insurance refuses to pay and that ends up setting the schedule.

In other news, I've been working a lot this summer. We've had some short breaks and I was planning on doing a blacksmithing workshop right now, but I had to cancel because... last week was Michelle's big week for IVF and I needed to be around for that. I'll post any big news on the blog, of course, but things are looking good so far.

We're also seriously looking at houses to buy, which is very exciting. We're thinking pretty seriously about the Mount Airy neighborhood here in Philadelphia - larger houses with more space inside and out, quieter, tree-lined streets, and some very nice older architecture among other things make it very appealing. No offers made yet, but probably quite soon.

Michelle's show 'Disarray' for the Philly Fringe is coming up in early September - that means lots of work for her ( and a little for me as her 'technical director' ). September 2nd is also our first marriage anniversary, so we're going to get away for a day or two to celebrate.

Chemo is Over!

2007-06-18T19:57:00.000-04:00

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.

Penn Relay results

2007-04-26T22:08:00.000-04:00

I just thought I'd follow up with the official results of the Penn Relay Distance Classic 5K. My official time was 27:12 which, you'll see if you look closely, puts me 13th in my age group, which is still 30-39 for a few more years. Anyway, I'm proud of my run and I'm glad to see my time is improving...

Many months...

2007-04-22T21:52:00.000-04:00

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

2007-01-06T05:57:00.000-05:00

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.

Year's end, year's beginning

2006-12-31T20:20:00.000-05:00

Back in Philly for New Year's Eve, we spent the last week and a half in South Texas. To me, it is still a somewhat strange and foreign place, but to Michelle, it is home. The weather got progressively better while we were there. Christmas weekend we went to Michelle's parents' place about an hour north of Corpus Christi and stayed inside almost the whole time because of wind and rain. But the day we went to the gulf coast, pictured at right, it was quite nice, though still windy.

Because of the timing of work and everything, we declared Saturday the 24th our 'Christmas', or at least, our day of exchanging gifts and eating ridiculous amounts of food. No wait, the food part was all week. Anyway, it was a nice cozy family affair with lots of wrapping paper and spiked eggnog.

I took the opportunity of this vacation to learn to crochet. It may seem an odd endeavor, but my intention is to figure out something to do with the vast numbers of plastic bags that we've accumulated and can't figure out what to do with since they're not recyclable and we don't want to throw them away. My fiber-artist friend Janell delivered a crochet hook for me one early morning a few weeks ago then let me borrow a book about it - I still haven't had any success with the plastic, but I'm still learning the stitches for now anyway...

This is the end of the year, too, and what a year. I wouldn't have this blog if it weren't for the brain tumor, but looking back on it, it would have been a pretty incredible year anyway. For my own edification, I'll list a few things, not particularly brain tumor related, that stand out:

getting married
driving cross-country with my team from work (who also happen to be my friends)
visiting North Carolina - twice - and taking the train back once
getting a tour of the new Smithsonian Air and Space Museum from the Director
watching humpback whales (on our honeymoon, no less) off of Cape Cod
learning AJAX for reals
learning the foxtrot with my wife
riding a bicycle built for two with my wife on Martha's Vineyard

That's a good year. I started out 2006 thinking of stability and what I got turned my world upside-down. I'm starting out 2007 also thinking of stability - here's to the New Year.

Staying on chemo, enjoying winter

2006-12-16T11:44:00.000-05:00

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!

Change of pace

2006-12-04T20:27:00.000-05:00

This month, because of scheduling issues at the hospital, I end up with an extra week before I see the neurologist again. I think my body's a little confused by this since I felt like it (the body part of me) was getting all geared up for another massive dose of toxins by getting anxious about every little thing. This week's anxiety-driver: my manager suggested I find a thank-you gift for an associate who has been acting as an informal consultant on my recent assignment of designing and installing a software build-and-deploy system for our team. Go figure.

I think the anxiety crested on Saturday night when I was having trouble sleeping and then had a long, elaborate nightmare in which Michelle and I plotted and carried out someone's murder. I won't bore you with the ramblings of my subconscious, but I ended up doing the deed, being arrested, and humiliated. It was an awful feeling and after a little reflection saw that in my mind, I am the killer and the victim here. I am not sure what else to make of it but it was the most powerful dream I've had in a long time.

Winter has started to move in here in southeastern Pennsylvania and with the cold comes colds and flus and the like. I've been lucky so far, even with my suppressed immune system, but Michelle has been out for a few days. It seemed like she was on her way out of a cold today when it turned flu-ish, so I'm watching over her this evening.

I'm considering requesting a 'chemo vacation' or hiatus, at least, for a few months while I try to learn more about the leukemia risk associated with Temodar. I think my body could really use the break, especially during the winter and I'd like a clearer head in making my decisions about this.

Back Home

2006-11-26T21:31:00.000-05:00

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

2006-11-23T12:55:00.000-05:00

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

2006-11-14T22:08:00.000-05:00

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

2006-11-09T09:34:00.000-05:00

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

2006-11-05T11:51:00.000-05:00

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

2006-11-04T10:42:00.000-05:00

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.