surgery approaches

I am in the Cleveland area this week, staying with my father with the intent to get some time away from the everyday and spend time with him as I am able. It's a 'working vacation' since I am able to work remotely and need the vacation time for other things.

I was here for the Labor Day weekend and got to work on several projects around the house with my dad, which was very satisfying. I did manage to get us out of the house on Labor Day with a day trip to Cuyahoga Valley National Park. The rest of the week, I've mostly been working from my little attic/bedroom/office here as Autumn begins to stir.

Three weeks until surgery. I'm frightened but resolved. I listened to part of an NPR story this week, interviewing a neurosurgeon who was talking about risks with brain surgery and how some of his patients would say 'I have complete trust in you' and mean it. He pointed out, however, that he was human and small errors while working with the brain can have massive repercussions for the other party. This is not news to me, of course, but an unpleasant reminder. I'm convinced, however, that this surgery can buy me some quality time. Perhaps 'rent' is more appropriate.

I am gathering people to walk with me in the Philadelphia Race for Hope on Sunday, November 1 at the Philadelphia Art Museum. We will be celebrating my much cleaner scans and newly-regained ability to ambulate. Won't you join us? Sign up with Team PENN NEURO, if you please.

new surgery scheduled

A lot has happened since the last post.  I waited to post for a long time because there were unsettled issues with schedules and work and since I don't have much control over who reads the blog (and don't want to), I postponed.  Then things started settling out and I couldn't find the time.  Thanks to another chemo treatment, however, I am up later than I'd like to be and thought I'd spend my last minutes of consciousness updating this here blog.

So what is all this schedule nonsense of which he writes?  Since my last post, in April, there have been some important developments in my treatment.  I visited Carol Shields at Jefferson Hospital, recommended to me as the best eye doctor in Philly.  She thought I was getting the best care possible already at HUP but brought up an issue that had been lingering in the back of my mind : removing the eye, sometime in the future when other options have been exhausted.  

I returned to HUP with this idea and ended up speaking with Dr. Judy who had a different idea: another craniotomy, this time with the intention of removing tumor from the frontal bone and doing it as soon as possible.  He is hoping to remove all visible tumor which would put me in a much better position, to say the least.  That was a Tuesday towards the end of May.  Michelle and I mulled this one over but when my employer laid off about 1/4 of our staff on Thursday, I decided it was not the right time to ask for a month or more off of work.

Weeks passed, including one in which I was unable to get chemo because our new, less expensive, health insurance wasn't ready to cover me.  Despite the frustration of fighting with the health insurance company, that was the best I've felt all year.

Faced with the trade-off of losing my livelihood or risking my life, I've been cautious in making plans for this surgery.  Fortunately, my good luck has held out with regard to my tumor remaining stable through the last two chemo cycles.  In the meantime, we scheduled surgery for the last possible time we felt comfortable with it: September 28.

Also in the meantime, my Step-mother Ina passed away after a recurrence of lymphoma.  She died on July 4, Independence Day and Michelle and I joined the rest of her children and several others for a viewing on Sunday, July 5 in the Cleveland area.

a few items of note

This past week has been unexpectedly eventful in surprisingly personal ways. I'd like to take this space to describe some of these events as they pertain to the subject of this blog and add any reflections or connections that occur along the way.

Tuesday was the beginning of my third cycle of chemotherapy (Avastin + Irinotecan + the accoutrement). That means I've completed two cycles and I had my MRI to see how this is working. The mid-way scan ( at the beginning of March ) showed 'slight' growth in the tumor in the orbit. The reading was delayed a couple of days because, well I'm not sure. My neurologist, for all of her skills, is only learning to interpret the orbit scans. I'm not as good as it as she is. Anyway, she got the official report on Tuesday morning and called while I was in the chemo chair. The scans show the tumor is stable - this is the best news we've had in the cancer department in at least a year. Woo-hoo!

It means something is working. That, or the tumor has given up, which seems unlikely. It may well be the Avastin, that's why I'm taking it. That's the assumption and it means I'll be doing more laps on the chemo track.

Speaking of running, I ran in the Penn Relays 5K Distance Classic again this year. I can honestly say that chemo had a lot to do with my less-than-stellar 28 minute time, but I raised some money for The Wellness Community of Philadelphia and so it was worth it. The race started at 7:40 AM on Sunday morning.

After we came home, I showered, grabbed a power nap and then headed up to Brooklyn to see my friend Cordula. Cordula has been part of my nebulous 'other family' in New York for over a decade. She's an artist and, for a long time, a general contractor. She's a German who learned English in the Bronx. She has two lovely children who I've watched grow from knee-high to teenagers. I've worked for her when my luck was down and we've laughed together in good and bad times.

Some time after I was diagnosed with glioma in 2006, Cordula began having seizures and, eventually, she was diagnosed with GBM, the most aggressive form of glioma. She had two surgeries within the first year of diagnosis and was soon on a clinical trial which seemed to keep the tumor in check for a while.

When I saw her on Sunday, I knew it would be for the last time. Our mutual friend let me know that by the time she'd returned from another trip to Germany two weeks ago, she'd lost control of the right side of her body and there wasn't much time left. I sat with her on Sunday afternoon for an hour. She lay in bed the whole time, but at first she opened her eyes and she may have seen me - I found out later she'd just had her first dose of morphine. I put my hand on hers and she was awake and active enough to lift her hand and put it on mine.

She passed away on Earth Day 2009, Wednesday, March 22.

I can't really put these things together for myself. I am fearful of death and hearing that my own inevitable demise is stayed once again fills me with hope. Then there's the reality of living with chemo which is trying, at best. Then there's Cordula.

I've been saying lately that I'm tired of having cancer being the center of organization for my life, and it's true. I don't expect that to change any time soon, and probably never. This has been getting me down lately - hoping that there will be a time when I can get a break from needles and doctor's appointments. I'm working with these thoughts, feelings, and attitudes, trying to observe them and learn from my choices and reactions.

chemo ahoy!

I haven't updated my blog because work has been very demanding in the past two months and I haven't wanted to spend any additional time at a computer.

The MRI in January was bad news. The tumor continued to grow despite the Lomustine and so we're on to a combination of Avastin and CCNU, also called Irinotecan. I wonder if 'chemotherapy agent' is like 'secret agent' since have so many names...

I had my first infusion on Monday, 26 Jan and it went pretty well - first of all, I had company the entire time - thanks to Becky, Katie, Morgan, and Maggie for all spending some time with me that day. I definitely had to drag myself through the rest of that week, but instead of experiencing the side effects of the medications I was warned about, I experienced the side effects of the medications I was given to prevent the side effects of the chemotherapy. The irony amused me greatly, especially around 2 and 3 in the morning as Decadron kept me up for the first two nights after the infusion. :)

Surprisingly, the morning side of my double vision and much of the swelling in my right eye actually went away for a few days after the infusion. Michelle and I are guessing that this was also due to Decadron, since symptoms returned as Decadron wore off and I regained my sleep and bowel movements.

The next infusion is this Tuesday and then every other Tuesday as long as my blood counts are good or until something better comes along. A 'round' of this chemo is three treatments ( six weeks ) and I'll be getting an MRI at that interval as an update. There are a lot of questions I'm not answering here because no one has the answers. I think the basic approach at this point is to keep the tumor from growing for as long as possible and 'debulk' via surgical intervention when required.

pick your poison

So, surgery came and went as did a lot of great food through our kitchen. And the entire (original) Star Wars trilogy on DVD and the 2 1/2 hour documentary on the features disc.

My right eye is a little pudgy and I have some double vision when I wake up and late at night. I think I might still have some grogginess from the anesthesia. Other than the activity restrictions, though, I feel pretty much like my usual self and I'm headed into the office again tomorrow, a week after surgery.

So we saw Dr. Rosenfeld again yesterday to talk about chemotherapy. We arrived thinking that we're just going to discuss the schedule for Avastin, but were surprised to hear her talking about CCNU (or Lomustine) instead. Apparently, due to possible blood-related issues with Avastin, I wouldn't be allowed to start it for another 3 weeks and we are all interested in getting things moving along.

Much of the visit was taken up with discussing the various possible side effects of each chemotherapy agent in consideration. Lomustine is linked to some sort of terrible lung disease, but only after several months. The idea is to get me started on it and then see if there's an effect on the tumor - if so, maybe we'll stay with it, which means 'baseline' pulmonary tests, or maybe we'll still go with the also-side-effect-laden-but-not-as-deadly Avastin.

Lomustine is oral and we left with a prescription for two 100mg and one 20mg tablets and a warning that not all pharmacies are likely to carry it. This advise was proven true when I called the CVS across the street and the pharmacist told me "I have no idea what you're talking about." when I asked how long it would take to fill my order. We went to the pharmacy at the hospital and, while they knew about it, they didn't have the prescribed doses in stock either. We ended up picking up my prescription from them anyway, this morning, filled with 22 10mg tablets.

The dose is effective for 6 - 8 weeks. It's taken on an empty stomach a half-hour after Zofran (anti-nausea). I took the Zofran at about 3:15 this afternoon and the Lomustine a little before 4. I don't feel any nausea and I've been able to eat a little, but I feel a little woozy, truth be told.

If all goes well with the Lomustine, there won't be much to report until mid-January. Here's to an uneventful December and Happy New Year for everyone!

something old, something new

Two weeks ago, between the Philadelphia Phillies winning the World Series for the second time in history and the Democrats having a US President-Elect for the first time this millennium, I visited my neuro-oncologist. We told her the story of the last four months of consultations and tests, waiting and more waiting. Then she told us that, during that time, the tumor had grown back.

I can't describe the frustration and anger that both of us felt realizing that so much of the time doing what we thought was the right thing, chasing down records and medical professionals, was really wasted because I'm back where I was in July, only worse because the tumor may have spread to new territory.

Meaning, also, that I need surgery on my eye again. We've scheduled this with the same eye surgeon as last time, Dr. Gausas in ten days, on Wednesday, November 26, so I'll be recovering during Thanksgiving weekend.

Dr. Rosenfeld also talked about Dr. Fine's recommendations that we were still rather keen on. She told us that their recommendation against further radiation already took into consideration the possibility of proton beam therapy - but she said if someone else thought differently I should consider it. She said she would be willing to prescribe Procarbazine and CCNU but made it clear that she thought Dr. Fine may have glossed over the side effects of these drugs and that she still recommends Avastin post-surgery. At this point, we're going with her recommendations.

Another realization came out of this last meeting with Dr. Rosenfeld: no one we've talked to has dealt with a glioma that's spread to the orbit before. She told us that they don't know how the chemotherapy will work for me - the tumor is no longer in the brain, but it's still a brain tumor. While I'm going to pursue my treatment here, I'm going to try to find out if there's anyone out there that's seen something like this before and might have some relevant experience.

In about an hour, I'm joining Michelle and a group of people from our Buddhist meditation group for a prayer circle for healing. The people in this group have known me for less than a year but most of them have made exceptional efforts to support us in various ways during this time.

stumbling forward

No big news. Watching what is almost certainly the last game of the 2008 World Series which is happening in the chilly drizzle 15 miles south of this cozy spot on the sofa in front of the TV. What's with the towels?

I saw Dr. Lustig last week, my radiologist here in Philly. He was unsurprised to hear that no one so far thought that more radiation was a good idea for me. He seemed ambivalent about the possibility of proton beam radiation and pessimistic about actually being able to schedule treatment at Massachusetts General.

We all agreed that it's been too long and it's time to do something. Lustig recommended starting Temodar as soon as possible, after a baseline MRI. His office scheduled the MRI for me, this Thursday, October 30.

On the weekend, Michelle and I discussed this path some more. I'm still persuaded by Dr. Fine's reasnoning that the PC combination may be more effective for me and I'm interested in trying something new, but I'm not confident about the choice. This week, Michelle is in a week-long Butoh workshop so most of the phone calling is on me this week. I scheduled an appointment with my neurologist at HUP for Monday and I'm trying to find out from NIH if I can get Dr. Fine to prescribe the chemotherapy or at least advise me. In this uncoordinated way, we progress.