Blogging in B Minor

One of the most difficult aspects I have faced as a brain tumor survivor is making decisions around how to treat my tumor. In the beginning, there are a million different alternatives thrown in your face. I empathize with people starting this journey because it’s difficult. What do you believe? Who do you believe? Everyone has an opinion and most all of them come from extremely intelligent, highly educated professionals. Do you opt for a clinical trial right off the bat? You could, and it could be the one that makes the difference. It could also be a trial that fails. Or, do you opt for a treatment that has proven success – even if that success doesn’t sound appealing?

With any brain tumor you want to CURE this thing right off the bat. You want to knock it out. You want to employ a treatment modality that has the highest likelihood of doing the job. At the same time, you don’t want to kill yourself in the process! Tough situation. For me, it came down to a simple decision. There is a ton of research taking place – new discoveries are happening each year. I decided this was about utilizing a modality that would extend my life out as long as possible so trials that are now in Phase I or even Phase II could be proven out. If my tumor shows ANY growth, I will avail myself to these treatments but for now, I am adhering to the tried and true treatment that UCSF, Harvard, Duke, MD Anderson and many other experts have recommended in my case – and that was IMRT radiation for 5 weeks with concurrent Temodar and then 6 months of Temodar on an alternating weekly schedule. I am finishing my 6th cycle now. I will continue until 1 year and then stop, unless there is shrinkage in which case I will continue. If there is growth, then it’s time to look at trials and other “cocktails” and go off the beaten path. There is a Neurosurgeon at MD Anderson in Houston, Texas that found himself with a grade 4 GBM – he was faced with all of this. Guess what he chose to do? Radiation and Temodar. He has a wife, children and everything to live for just like anyone else.

We can all over-analyze this. I did. But in the end, for me, it was about going with tried and true methods that had the best percentages of extending my life out, increasing my survival rate and attempting to ensure that I’m here when even better treatments are available. The problem with clinical trials is that many of them require that you’ve had no prior treatment – if you’ve already been on Temodar, for example, you aren’t eligible for the trial. However, if you have recurrent growth, then you can jump back on. That’s my own personal strategy. But initially, I’m driving the car that has been manufactured for 40 years and has an engine that I know won’t die for awhile.  Of course this is a terrible analogy with regard to Temodar, because it, too, was a clinical trial just a few years ago and was found to be extremely effective fighting grade 4 astrocytomas (aka GBMs).  Researchers subsequently determined that this chemotherapy was effective fighting grade 3 astrocytomas and oligoastrocytomas.  This is just one man’s opinion, of course!

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Last night was most interesting. I was very tired and went to bed at 9pm. I took my dose of Zofran (anti-nausea medication) around that time as per usual and then…..I drifted off to sleep! I typically take the Temodar dose about 1/2 hour after the Zofran. In 9 months this has never happened. Aidan is sick right now so around 1am he was having a coughing fit and it woke me up. I honestly hadn’t even realized I didn’t take my chemotherapy medication. I took some cough medicine into Aidan and when I came back to bed I jiggled the medicine cup I put on my nightstand when I go to bed and all the pills were still there. So I took them. What I learned was that the anti-nausea medication absolutely works! I had taken it 4 hours prior instead of 1/2 hour and I slept horribly, felt my stomach tightening up a bit and just didn’t feel that great. It wasn’t seriously bad but I could feel the effects. This morning, when I got up I didn’t feel good. I immediately took another Zofran (which I never have to do in the AM) and ate something and now I’m feeling fine.

Anyway, no huge problem but you live and you learn. For me, taking this when I’m sleeping is key. I sleep pretty hard even though I wake up a few times a night. So long as I take the anti-nausea medication 1/2 to 1 hour prior to the chemo, things are good. I’ll be trying to 5-day here in about 2 weeks so I’m sure it will be bit tougher but I will just take Zofran 3x per day instead of just once at night which I’m doing now.

It’s supposed to rain all weekend here – we had a storm here in January with wind gusts up to 60mph. Since Sacramento is the tree capitol of the world second only to Paris, France, it was a mess. The storm on Saturday is expected to have gusts reaching 70mph so I’m sure there will be a lot of downed trees and limbs. Nonetheless Rachael and I are going to a restaurant called The Waterboy on Saturday night. It’s supposed to be really good and we’re trying to get out with some regularity. We need to.

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It’s been awhile since I’ve posted – mostly because I’ve just been busy this week with the kids and obligations. Next week is going to be very busy. I have an appointment with my neurologist and oncologist. I haven’t had a simple partial seizure for awhile though which is great news! So, my medication levels with regard to Lamictal and Topamax, the two anti-seizure medications I take to control them seem to be adequate.

Aidan and I had a really fun time last Saturday and I have posted some pictures here. I have posted before about how he earns “tokens” when he exhibits certain behaviors we are wanting to instill in him such as listening the first time, picking up his toys, praying by himself, etc. Once he reaches 10 tokens, he gets to have a reward which is not material in nature. So, he chose ice skating! There is a great rink not too far from our house. They have two NHL regulation sized rinks and on Saturday mornings they have public skates from 10-noon. It is hilarious seeing all the kids skate around with the “walker-like” devices. These are a great invention – they are similar to walkers people who are older use but slide on the ice and allow the kids to get used to the feel of the ice. Aidan was tentative at first but he is fearless so after about 5 minutes he was trying to skate fast, spinning in circles and wanted to race me. He is so funny – he will try anything at all. Of course he wanted to try it without the walker so I skated away from him several times – about 5 or 10 feet and he would fall. Not wanting to be seen in that position he would try to get up really fast and fall again! I told him to just slow down and helped up off the ice and back to the wall. It was so fun though – he and I just had a great time. He had such a good time that he wants to do that for his next “reward”. We of course do things outside of the reward system but we set up some special things like this as motivation. The tokens he earns are cool colorful magnets that he gets to put on a board in rows next to magnets that have labels with the behaviors written on them.

So how fun! It was a great example for us of spending quality time together. These are the moments that I really cherish and again, it wasn’t that I didn’t before but as a brain tumor survivor they take on a different meaning. Honestly, none of us really knows how much time we have left but I do know that I have a serious health condition. Brain cancer is not something that you survive into your 70s and 80s! So, I take each moment like this and soak it up. What a great day we had!

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Well, I have decided that when I am finished with cycle #5, I am going to try the 5-day chemo regimen. With this schedule, I will take Temodar for 5 days and then be off of the drug for effectively 23 days each month. I mentioned in a number of posts back in the October time-frame or so that the reason I was on this 7-day alternating week schedule was due to the improved survival rate. There are studies that indicate this is true, particularly when taking the drug every day at a lower dose as I did concurrently with radiation therapy post-surgery. However, I opted for a 7-day alternating schedule because I just couldn’t deal with being on the drug 24/7/365 so-to-speak. As the cumulative effect has developed, however, it’s become more difficult to recover each week on the 7-day.

It’s a difficult, strange new land to navigate – full of decisions to make and everyone has a different opinion. There is no doubt that the radiation and Temodar as the chemo of choice and used concurrently were right on target. The questions are the regimen and secondly how long. Some people take this drug for 2 years. The “standard of care” is 6 months. My oncologist is probably going to recommend 1 year. So, if you have stable MRIs through a year, obviously coming off of the drug is a little bit unnerving. However, there are long term side effects to taking this drug – such as Leukemia. One thing is for certain, based on research and discussions I have had, it doesn’t appear there is any benefit to using Temodar beyond 24 months.

In 2 weeks I will sit down with my Oncologist and discuss this but I’m definitely going to try the 5-day. It will be about 100mg more per day – 400mg instead of 300mg. I’ve tolerated it well so we’ll see how it goes but the goal is to have more quality time each month with my family. It’s not terrible and I make it through ok but if I can improve it, particularly given the little data re: survival rates and the significant data backing up the 5-day, that would be great. Additionally, I have done the alternating regimen for nearly 6-months so I feel good about that.

Site Search Tags: brain tumor, brain tumor research, cancer, chemotherapy, glioma, gbm, my story, oncologist, oligoastrocytoma, radiation therapy, radiation, temodar, tumor

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In discussing my scans with my oncologist, there were no revelations of course. However, I did get into a lengthy discussion about the 6-month decision point. I also talked with her about my fatigue and we discussed some options. At the 6-month mark, I will likely stick with Temodar for another 6 months. At one year, I would come off of chemotherapy altogether and then just watch it and see what happens. This is all assuming there is no growth detected and that I continue to be asymptomatic. If there is growth, then other options would be brought to bear. After a year of Temodar, the effectiveness of the drug is really called into question when balanced against the effects it has on one’s body. There are people that are on there 20th, 25th or even 30 some odd cycle of Temodar but my oncologist really believes this is far beyond the drug’s ability to be effective.

In terms of fatigue, she suggested I could try the 5-day a month chemo – it does fly in the face of what I’ve been doing in terms of studies that have shown increased survival rates when taking the drug every day (I opted every other week due to my lifestyle and families’ needs) but nonetheless, it was placed on the table. There is also a regimen of 21 days on – she said most don’t even realize you are on it. I can try both but I’m in a routine and am not sure I want to. The 21 day is definitely not something I want to do. The 5 day increases the dose from 295mg to 400mg – not sure how that would be. Fellow survivors that I know who are on that regimen have varied success – some are just fine with it, some have some issues with stomach aches/tightness and others have very bad nausea. I have done fine with Temodar so I may be ok but I might stick it out.

Today was a good day – we packed a picnic and went to the park. Keegan was happy on the blanket and Aidan enjoyed himself. For Rachael and I it was good to get out and enjoy some time – the weather here is unseasonably warm – in the high 60s so that makes it perfect for an outing like this. Seeing Aidan grow is amazing. He has no fear. He’s going down steep hills on his Razor and picks up such high speeds that it makes me nervous! He starts wobbling and correcting his steering and I’m just ready for a major wreck but he pulls it off every time. He’s fallen but he always gets up and dusts off his pants and keeps going

It was a good day.

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Stable disease! I feel so blessed to have had multiple imaging studies now showing a stable tumor. Needless to say we are very happy. I don’t know why but I was a bit more anxious about this one. I prayed about it and turned it over but I must have held on to it more than I typically do. So, all is well and I have entered cycle #5 of 6 as of last night. The first few days make me tired and the first several days afterward are the same – in between is alright. As I have mentioned, the end of cycle 6 (the six month mark) is key and I will have some big decisions to make.

If you have ever wondered what an MRI report looks like, I have posted it below – just click on the “See photo in full size” and it will pull the report up in a new window. I have cut out all of the personal info for obvious reasons but for those of you who are starting on the journey, it will give you an idea of what to expect. All of the reports provide a history, the type of examination conducted, what the current study is compared to (if you have had previous studies – this is to gauge any growth or change), the techniques used as part of the study, the findings and the final impression (basically a summary). The technique used and the findings are highly technical. The technique really refers to the types of scans used (e.g. sagittal (also known as median) plane is an X-Z plane, perpendicular to the ground, which separates left from right) and if a contrast agent is used such as Gadolinum (Gadolinium-enhanced tissues and fluids appear extremely bright on what are called “T1-weighted images”). This provides high sensitivity for detection of vascular tissues in tumors and permits assessment of brain perfusion. Finally, the impression is really the most important part of the report. In my case with this report – “stable right posterior frontal abnormality consistent with cerebral tumor.” Stable. After reading reports like this for over a year I know how to read them!

So, my next MRI will be at the beginning of April and this will be the same time I will finish the 6-month regimen of Temodar – “the standard of care”. Decision time. That’s all for now. Thanks to all for your prayers, well wishes and good thoughts – we know they all help so much!

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It’s been a bit more difficult to get to the blog with so much going on. Work has been really busy for me which is a good thing! I’ve been really busy – in fact, this is busier than things have been for quite a long while. I’m just about finished with a song. I know I have said this for awhile now! I have a few that are in the bag musically but I just didn’t feel it. I think I’ve talked about my digital graveyard before? It’s a place where songs go that just don’t seem to go anywhere. Sometimes they are just chord progressions and other times, as in two cases here, they were fully produced pieces with drums, bass, strings, guitars, grand piano, etc. etc. and I just didn’t feel like they were going anywhere for me. Perhaps it was going through treatment? It doesn’t exactly put you in a hugely creative mood, however, songwriting isn’t something you can force – either a song comes or it doesn’t.

Well, I do really like the sound and feel of the one I’m chipping away at now. The music is nearly finished so the grinding part will start with lyrics and vocals. For many songwriters and me included, it’s the hardest part. A songwriter once said “my favorite part of writing a song is the beginning and the end” and it’s so true! You are inspired in the beginning and once you are done it’s a great feeling to sit back and listen to a finished piece (providing you didn’t cut corners and slam it out), but the grind can be tough. Anyway, when it’s done I will post it here.

So I’m still dragging with fatigue. Seems that each week I come off chemo it takes 3-4 days to feel sort of normal again. It’s just the cumulative effect I think. Not much that can be done that I already am not doing with regard to diet, supplements and the like. I finished cycle 4 as of the end of this week (I’m off chemo this week which is the last week in this cycle) so I’ll begin cycle 5/6 on Monday. Once I get done with 6 I’ll have decisions to make. It will be a difficult proposition for sure. Many of the other drugs are as or even more harsh than Temodar – and discussion centers around adding one in addition to Temodar possibly. Of course one option going off of chemo completely and seeing where we go. Lots of options and we will deal with that when the day comes.

My next MRI is this coming Monday so I could use your prayers. So far, all of them have come back stable – praying for the same or better results here as well. I am tracking this serially every 60 days and my last MRI was at the beginning of December.

Our small group is going through a GREAT study right now on living the life you always dreamed of living. The book that we are reading is amazing. I was reading it last night and the author was telling a story about giving his kids a bath and how his daugther is just filled with joy for no reason at all – she’s a little kid and every moment of the day, for the most part, is joyous. He said that when she is filled with so much joy that words cannot express how much joy she feels, she just dances around in circles. They call it the dee dah day dance because she is so filled with joy that she has had a dee dah day. He goes on to say that one night he gave her a bath and when she got out of the bath she was doing this dance and he’s asking her to come over to dry her off and she’s laughing, dancing and he’s saying come over here – hurry, I need to get you dry – and he starts getting frustrated because she’s twirling, running away and doing this dance and finally with a more stern voice he says “please come over here, we need to hurry and I need to dry you off”. Then he said that she asked the most profound question: “Why?” The point he made and what struck me is that our lives are lived by timetables, when is the next meeting, where do we have to be, what is next, what happened last, etc. and as a result, we miss out on the joy of now. He said that after she asked that question, he got up and did the dee dah day dance with her and they just took their time. What a concept huh? For me, I have done this exact thing with my son in the bath – we need to hurry, it’s time for bed, gotta get out, blah blah blah.

Anyway, this is a great study for us. Again, I could use your prayers for Monday and by all means please continue to email any requests you have.

Best,

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Each day brings new experiences and today was really great. It’s the national MLK observance and I spent the better part of the day with my son. We went to the park and took along our skateboards and skated around together. I picked a board up about 3 months after my surgery, probably against my better judgment, and decided to get back into it so we could skate together. It’s great! I skated all the time growing up in Huntington Beach, California. It’s surf city – we ran around at the beach and that’s what we did – rode our boards, body surfed (I wasn’t a surfer), layed on the sand and had fun. So it’s a nice time for he and I. We ran some errands after that – some clothes shopping which of course he doesn’t care for and then we went to lunch together.

I decided to do a pretty fun craft with him today. I have been saving these crayon pictures he’s drawn for several years. Some of them are great! So I told him that we should do something with some of them so we went to a local craft shop and bought some frames, mattes and so forth. His room is all blue and red with dark woods so we matched them all up of course. We found some of this work – on yellow paper and such and started to frame his pictures. We finished one and it was time for his “quiet time” but he’s so proud of his work! His framed work sitting up on his dresser – what could make you feel more proud as a 5-year old kid? I felt great about doing this with him and it’s something I’ve been thinking about for awhile.

As for me, I’m doing alright but it’s been more difficult lately with headaches and I”m not sure what to attribute them to, if anything. My professional life has been a bit more stressful in terms of projects starting to wind up and so forth but nothing I haven’t dealt with many times before. The headaches aren’t bad but the pain can come up quite suddenly. When I get up from sitting or laying down I get a sharp pain on the right side of my head. This has been going on for at least 3 weeks now and hasn’t subsided for more than a day at any given time. Of course I sometimes let my mind wander, then rein it back in. I have another MRI coming up after the 1st of Feb. I’m in the middle of cycle #4 – I start tonight for 7 days, then I’ll be off and that will end the cycle. We’ve talked about the decision point at 6 months but I’ll start thinking seriously about that and research it at about 5 1/2 months.

That’s it for now.

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