Blogging in B Minor

Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

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I finished up the first week back on chemotherapy last night and overall it went very well.  As I mentioned, I think my body wasn’t ready for it on the first night but by night 2 and 3 I was pretty well in sync with my system again – nothing to eat after 7pm, zofran at 8:30 or 9pm and then chemo treatement starts at 9:30pm as I go to sleep.  So overall I’m really happy with the way it went coming off of a 5-week layoff.  I’m also feeling good energy-wise.  I have some of the typical chemo-related fatigue but I don’t feel like I did before when my counts were so low – it was more or less just walking around feeling like I had a bad cold constantly and wanting to sleep! 

So another week on after taking a one week break and round 8 will be history.  If all goes well and I don’t have to pause my therapy for any other reasons, I will be completely done by November.  I will be taking a break for a week or so at the end of August for a vacation up to Victoria, British Columbia.  No, I’m not such a die-hard that I plan to be popping chemo pills as I gaze out of the hotel window taking in a nice view of the Empress hotel and Victoria harbor!  Speaking of vacations, that will be nice and we also have some friends who have a place at Northstar in Lake Tahoe.  She’s great and has been consistently “reminding me” to get up there so that is something that is in the plans too.  After last year and being tied to the house with a 2-mile rubber-band, it’s nice to think about these things and actually plan them out.

I’ll post again over the weekend – I hope everyone is having a good week and again, thank you for all of your continued support…

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Ok, it’s been a year now. 1 year since brain tumor surgery. It was 1 year ago this morning I was packing into the car after getting virtually zero sleep and heading down to the hospital with my wife to undergo my craniotomy in an attempt to resect what we now know to be a grade 3 mixed glioma. Wow – 1 year! Since then, I’ve undergone 6 weeks of radiation, 8 rounds of chemotherapy using Temodar, 2 PET scans, and countless MRIs. After all of this – I have stability. I still may have 100% of the tumor in my brain but I have no growth and have have achieved stability through radiation and chemo. For that I am grateful to God.

What I am also grateful for is that we had the ability and foresight to jump on this. If you go all the way back in my blog (if you haven’t been a reader), I was on a “watch and wait” recommended strategy and the short of it is I probably would have been watching and waiting, perhaps all the way up until now had it not been for the opinions of two other outstanding neurosurgeons who indicated this was a far more serious situation in their view.  Therefore, it could have been a scenario in which I had a grade 3 malignant glioma that would have been percolating in my brain as I stood by on this “watch and wait” strategy, assuming I remained asymptomatic and MRI scans were stable.  However, 2nd and 3rd opinions avoided that.  And, there were no wrongs done here. My medical care is the best I can get. My neurosurgeon, Dr. Edie Zusman is amazing.   This was a neuro-radiologist call and they simply felt it was a low-grade tumor.  It wasn’t.   Bouncing my case off of others like Dr. Mitchel Berger at UCSF and Dr. Peter Black at Mass General has been a Godsend and was a key tenet of my strategy.

I am just grateful to everyone in my life that has been there for me and for my family over the past year. This has been the most difficult year of my entire life, hands down. And, for everyone that has supported me, my family in any way at all – thank you.

As you know I’m off chemo for now – we’ll find out what’s next up this week. Again, thank you so much for all of your support.

Ok, in closing, turn up your speakers a touch and check this guy out! Hey, I’m a year out from this so I had to include some comedy in this post. For those of you who are not familiar with the band U2 and Bono, you won’t get it but most of you are. Hilarious.

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Here is a 50 minute video presented by the Central New Jersey Brain Tumor Support Group.  These are brain tumor survivors who deal with the same circumstances we do if you too are facing a brain tumor diagnosis.  They share their stories and these are very positive stories – people who are facing grade 3 and 4 brain tumors who are getting along well.  I would encourage you to watch this.

It is amazing if you haven’t ever been around other survivors or formed relationships with others how there is this common zeal for life.  We have a different perspective, now.  I have talked about this before.  It’s not that I didn’t appreciate life before – I just look at life differently and I live every day more fully.  Put simply, when your life is placed in jeapardy and could be taken from you, your perspective is rearranged for you a little bit.  And, in my view, that’s not exactly a bad thing.  There is positive in all of this.

It’s about looking forward.  You can’t get stuck and stay in one place – be stagnant and dwell on the diagnosis for example.  Ever try to sit on a bike without going forward?  Doesn’t work – it falls over.  We have to move forward.  The survivors on this video are all moving forward.  Check it out.

 http://video.google.com/videoplay?docid=3738959408302608292

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Some good information should be available on Monday from UCSF.  For those of you that are not aware, The University of California, San Francisco has a Brain Tumor Center and it is one of the best in the country – certainly on par with Duke, Mass General, UCLA and others. Dr. Mitchel Berger, the head of the Department of Neurosurgery is performing a film review of my most recent set of MRIs which is something I have done on a number of occassions.  You may recall that he along with Dr. Peter Black at Mass General both agreed that I should have surgery back last June which was contrary to the opinion I was given here at the brain tumor center.  I have relied upon Dr. Berger ever sense from a radiological perspective to interpret my scans to ensure I have this second checkpoint.

In addition, I have been on the phone with the UCSF Department of Neuro-Oncology.  I am seeking another opinion with regard to my go-forward chemotherapy strategy.  For this case review, I have sent them just about everything.  MRI films, pathology, operative reports, 1p19q gene deletion test results, recent lab work, recent dictations from my Neuro-Oncology appointments, etc.  This review will allow me to have another opinion now that I have finished the 6 months of pulse therapy using Temodar which is the standard of care.  After 6 months, there isn’t a lot of information in terms of the right course to take – do you stay on chemo?  How long?  The same type?  Lots of questions.  Some with brain tumors may not know that in many cases you can contact brain tumor centers and facilitate these types of reviews with some footwork and organization.  It is WELL worth the effort and logistical challenges. 

So, on Monday or Tuesday of next week I should have opinions / impressions related to my scans (growth, stable, etc.) – and the verdict here has been stable all along and back in October of last year Dr. Berger concurred that all was quite stable.  I will also have the complete case review from a Neuro-Oncology perspective which will provide me with great information moving forward.

I was able to get some information through some connections from Dr. Jonathan Finlay who is at UCLA.  His response, to me, was shocking – he said the standard is to stop at 1 year which is consistent with my understanding but that he personally has his pediatric and adult patients continue INDEFINITELY as long as they have residual tumor present on MRI.  Wow.  Long term risks such as leukemia come into play with these drugs but I’m sure he views the long terms as the lesser of two evils so-to-speak, particularly if you’re dealing with grade 4 tumors.  So, we’ll see what UCSF says.

More to come next week.

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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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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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The preliminary MRI report came in and the brain tumor is unchanged and stable! This is great news for me. As I’ve mentioned before, shrinking a grade 3 tumor is unlikely so management is the realistic goal. If I can have scans over and over again that are stable and unchanged, that would be a blessing. I have been asymptomatic and things have been moving along nicely. This obviously makes moving into the holidays that much better!!

Secondly, I am getting over this awful cold. It’s been one of the worst ever but that is, in large part, due to my embattled immune system. My wife and son got over what I believe was this same cold in 48 hours. It’s taken me close to a week and this is the first day I’ve felt half-way decent. It’s just part of what I have to fight against. However, I met with my oncologist and we are going to postpone my chemotherapy until Monday night. I was to start last night but I need to have a few more days to get my body back into decent shape.

The meeting with my oncologist was fine. There was nothing eventful that came out of that. We talked a bit more about everything and future approaches but in light of how I’m responding so far to Temodar, we’ll stay the course continue with our plan.

I appreciate all the thoughts and prayers. All of us with brain tumors kind of band together around MRI time, don’t we! It’s a great kinship we have and I appreciate the prayers.

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