Blogging in B Minor

I am nearing the end of my first cycle of chemotherapy (1 cycle = 1 month). Although this hasn’t been as hard as some people have experienced, it has definitely not been a cakewalk. I have continued to work which of course is important but I have just been really tired and have felt that same flu sort of underlying feeling. I am on the 7-days on / 7-days off cycle so each month is split – I’m on chemotherapy for half of the month.

My dilemma is that during week 1 I really didn’t feel great but it was manageable. Week 2 (which was an “off” week) was not good – this was the week that everything hit me – I had chills and other symptoms that were more reminiscent of a cold. Now I’m in week 3 and I don’t feel that great. It’s really been a struggle this week to get to work and to be “up” when I get home. I want to be there for Aidan, help out with dinner – all of the responsibilities with the routine in the evening and it’s hard when you feel so energy-sapped. I complete the 2nd week “on” tomorrow night so I’m anxious to see how the 4th week will be which will be an off week. If I don’t feel so great. that will be 4 weeks of feeling under par.

What does this mean? I’m not sure just yet because I know the positives associated with the Temodar. I also know that quality of life is extremely important to me and my family. In the other column is the statistics associated with longevity. So the question for me is how long will I maintain the dose before I experience a diminished return. If it’s six months, do you gut it out? Will I adapt to it and will these symptoms lessen? Lots to think about.

For now, I’m focused on getting through the first cycle and then meeting with my medical oncologist and talking over this first cycle, looking at my counts and how I fared and what the strategy is moving forward – the immediate strategy for cycle 2.

We’ll see what happens…

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This is just another example of how sometimes the world’s most amazing creativity can be born out of the most tragic of times. This is an amazing performance that you have to watch – it’s about 7 minutes long so take your time and watch it to the end. It’s worth it.

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Quick Post – I received the dictation yesterday and Dr. Mitchel Berger agrees that the tumor appears to be quite stable and at this point the therapy using Temodar for the 6-month period which is the standard of care is the best course of action with scans every 60-90 days. He didn’t have any other observations other than to continue to watch this very closely. That is great news of course to have them concur with the findings on this end. Dr. Berger didn’t feel that it was even necessary to have the tissue analyzed by the UCSF pathology lab. It was a good report.

I’ve been fighting a flu or something – I had the chills over the weekend and a fluctuating temperature so I did a battery of lab work because if I have anything going on it could delay my next round of chemo due to begin Thursday night. I should have results back shortly. I’m starting to feel better but the weekend wasn’t so great. It’s harder to fight things off when your cell counts are down to begin with.

Other than that things are good. I’m just moving forward with the program. I’ve played some music and actually have the music for a song in the bag – it has been for 2-3 weeks and I mentioned it in another post. It’s more of a rocker but I haven’t had any time to write lyrics let alone cut vocal tracks. I’m not too worried about it though. My priorities are a little different at the moment!

Site Search Tags: brain tumor, chemotherapy, mri, pathology, chemo, temodar

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Well, just a quick note because I am crashing on two ativan tablets but I had the longest focal seizure tonight that I have had since the severe seizure I had 6 days after surgery. It was confined to my left leg as the mild one I had at the office back 4 weeks ago was but this one spanned 30 minutes. I took an ativan about 10 mins into it and then another 10 minutes later. I spoke with my neurologist and we could have taken the commando approach and gone to the hospital but it wasn’t severe enough in my estimation to do that.

It is frustrating! Your brain is sending signals to your leg to stop the movement and its ignored. Of course there is the anxiety with regard to what this could all mean.  I didn’t have any for several months and now two within a month.  You turn it over.  We prayed about it. We didn’t pray for strength – for courage or faith in Him. We prayed that God reign down upon us, that He was here that He surrounded us and comforted us – that He was with us and wrapped his arms around us – boldly moved forward with us in resolving this and as a result, gave us comfort and strength.

John 16:33 Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.

Will write more tomorrow. No word today from UCSF. I’m sure I will talk w/them tomorrow. Time to crash!

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For some reason I hit a wall yesterday. I’m not sure why but it is eerily reminiscent of the way I felt on several occasions while going through radiation and taking daily chemo. I feel fatigued and have just a general malaise. It’s hard to describe. It feels like you have a flu but not so bad that you have to lie in bed all day? That’s the best way to describe it. Perhaps delayed radiation effects but based on my discussion tonight it’s more chemo-related. This is the tough part – as long as these side-effects are few and far between, I’m okay with them. If they started becoming more consistent, I’d have to start evaluating them in terms of quality of life. What return are we getting from the Temodar – by taking it for six months vs. how it’s impacting my life because for the 2-3 day period this hits me, it’s unpleasant enjoying life is not easy to do. Anyway, it’s not an issue now so I can fortunately table all of that. For now, I’m just pushing through this short period and maintaining life as normally as I can. No calling in sick for this guy!

The UCSF film review will take place tomorrow and although I shouldn’t be anxious about it I do have some anxiety. The last time I spoke with Dr. Berger I was quite surprised – I expected him to concur with the Tumor Board here in Sacramento and of course he had a dissenting opinion and before I knew it I was having brain surgery. I do not think anything like that will be happening tomorrow at all! Surgery as I now know leads to hemiplegia, however, if he sees growth where others have not I have a new ballgame on my hands. I will post results when I have time.

I met with my oncologist today. It was a positive meeting for the most part. We discussed the current course of treatment and future strategy – perhaps adding another chemotherapy drug and taking a cocktail approach. There is a theory that you attack primary brain tumors by throwing a combination of drugs at them to more or less keep them guessing to keep it in simple terms. There are drawbacks in terms of side effects though. One issue is that you trade one evil for another, such as Leukemia. Chemotherapy drugs can result in a secondary cancer in some cases. This may not happen, and if it does may not happen until down the line but it could. What choice does one have really? We talked about the merits of continuing the current course longer than six months. There are studies related to how effective the drug can be after six months.

All in all, it was a good discussion. I will get a CBC at the end of the fourth week and if my blood work looks okay, I will start on my second cycle.

It’s late (yeah, 9:45pm is late for me!) so I’m going to bed. Well, if you have to take chemotherapy pills you just take them and go to sleep as soon as you can! It’s something you adapt to…

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I haven’t written for a few days – it’s been quite busy and I’ve been getting used to this new program. The first few days were a bit trying. The good news for me is that the dose hasn’t resulted in the nausea I was concerned about. I have a lot of what I will describe as tightening in my stomach area – it happens right after I take this drug, almost immediately. That continues all night and into the next day but tends to subside in the afternoon. The more difficult side effect is fatigue and I’ve talked about that before – it’s a very common side effect. Finally, dry mouth – it’s more of a nuisance. I just drink a lot of water for this.

The second item is I have sent my entire case, again, to the UCSF Brain Tumor Center. Dr. Mitchel Berger is the Chair of the UCSF brain tumor program and I have a lot of trust in him in terms of being a strong sounding board. He was instrumental and THE key in my decision to move forward with surgery in June. He will be reviewing my MRI scans from October 1st and comparing them against scans done 6/26, 5/18 and 1/18. He will also take a look at some dictation including the operative report from June 29th. I essentially want to see if he is in agreement with the assessment of the Neuroradiologists here that we have no change in the tumor and it’s stable. Last time we went down this road, we had Neuroradiologists here at the Neuroscience Institute that felt there was insignificant growth and that surgery was not the right call and Dr. Berger strongly disagreed. Dr. Peter Black at Harvard agreed with Dr. Berger. I had surgery. I expect that this will not be a repeat of that situation but I am a huge advocate of 2nd and 3rd opinions so I are going through the same due diligence. Again, you are your own advocate so you have to do these types of things. You cannot just take doctor’s assessment and accept it and move on. Had I done that back in May, I would have just been having an MRI in September and perhaps having surgery now! 5 months would have passed and who knows what could have occurred. I have treated this now so I cannot stress enough that if you are dealing with a brain tumor, please get 2nd and 3rd opinions. It doesn’t matter how good the doctor is – we are all human and doctors make mistakes.

With all of this, I am just remaining positive. I know why I am doing this and I am just sticking with the program. It’s chemotherapy, the side effects are unpleasant but I have to live with them. Most important of all – I have to and want to live and enjoy my life. Therefore, I need to forget about the chemotherapy from the standpoint of negative side effects and how they may effect my life and how I feel. I am accepting and grateful for what this is doing for me, that I can continue to be here and enjoy my life – and through the grace of God I can extend my life long enough so I can avail myself to a cure for this disease. In the meantime, I will enjoy my family and everything that life has to offer. This is the essence of what I am striving for every day. And I’m not perfect. None of us are but I’m enjoying my life as best I can and trying not to be distracted by this tumor. Sometimes it’s hard – just the other day I sat in my son’s room and this trial got to me. I saw one of those picture strips you get done at the fair of he and I – it says “Best Friends” and it’s 6 pictures on a 2″ wide by 6″ long card. We made silly faces in each picture – you know, tongues sticking out and just silly stuff. It got to me. Just thinking about the future. Things like this are hard sometimes. But I am now at a point where I can also look at something like this and realize that we will have so many more times like this to look forward to!

That’s all for now on the treatment front.

Site Search Tags: temodar, chemotherapy, faith, God, brain tumor

Best,

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There was a great message this weekend at church. Isn’t it amazing how many times things are right on target with where you are at a particular time? My wife and I were just talking about trials in life and how they build endurance and character – and how we’ve certainly had enough of that in the last year so as far as we’re concerned, a break would be ok with us! Between my situation and her high risk pregnancy complicated with bedrest followed by an emergency c-section 13 days after my brain surgery – well, let’s just say we think we’re doing ok in the endurance department! However, it’s sometimes hard to see why things are placed in your life, particularly when they can take your life. That is what I have struggled with over and over again.

What does scripture say about trials? Endurance? Well, after talking all about this with Rachael on Saturday night, there was the message on Sunday – the Book of James which essentially describes what maturity means. Going back to endurance, the following verses come back to mind which were part of a document I put together back early on (see http://www.markmillermusic.org/blog/2007/06/21/verses-to-know/):

James 1:2-4 2 Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. 3 For when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything. The message was great – it began by describing what maturity isn’t: age, appearance, achievement and academics and that God says maturity is determined by attitude.

It’s interesting getting some background. James was a relunctant believer. He didn’t believe at first and Jesus challenged him. James did become a believer later. He was likely the oldest of Christ’s brothers and sisters since he heads the list in Mathew 13:55.

Why did James write?

• It was written to comfort Christians undergoing trials – testings and penalties which were already coming because of their Christian faith.
• It was written to help Christians walk through TOUGH times.
• It was written to help Christians walk through TEMPTING times
• James wrote to encourage believers to take their walk with God seriously.

The next part of the message was all focused on the 5 marks of maturity:

1. A mature person is positive under pressure (James 1:2-4; James 1:12)
2. A mature person is sensitive to people – James 2:8 (see also James 2:1-6, James 2:14-16)
3. A mature person has mastered self-control – James 3:2 (see also James 3:3-11; James 1:26)
4. A mature person is a peacemaker, not a troublemaker – James 4:1
   1. Sources of conflict are selfishness and judging
5. A mature person is hopeful when troubled – James 5:7, James 5:11, James 5:16

Isn’t this enlightening? I am certainly being tested under items 1, 3 and 5 above. I believe the above makes anyone think because it is difficult for people to practice these traits consistently – I know it is for me. I struggle with them all of the time. And finally, how can the Book of James be broken down ? Our pastor broke it down as follows:

1. Wisdom: The foundation of spiritual growth
2. Faith: The substance of spiritual growth
3. Self-Control: The lifestyle of spiritual growth
4. Humility: The attitude of spiritual growth
5. Hopeful Prayer: The evidence of spiritual growth

This book and the verses contained within it were helpful to me particularly when this all started in my life – and they continue to be and will always be. Anyway, I thought I would share some detail behind this message because it was really fantastic. And, every once in awhile a message hits home and this one really did exactly that.

Site Search Tags: bible, christian, christian-resources, faith, god, verses

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It’s late so this is going to be very quick. Yet another change in the chemotherapy but this is how it is in the world of brain tumor treatment. I had a final set of research studies reviewed today and consensus is to move forward with a 7-day on, 7-day off, 7-day on, 7-day off program using Temodar to complete one cycle. The dose will be double the dose I was taking during the 6 week therapy post-surgery – 295 milligrams. I will be taking Zofran to control nausea and taking Bactram to prevent pneumocystis which is rare but can be life threatening if it develops. As before, I’ll just go in every Friday for a CBC to make sure my blood work all looks ok. It will be of paramount importance to stick to the diet plan. I have a plan that is documented in the Resource Library that is specifically developed to boost your immune system and fight against these problems plus fight brain tumors.

So, tomorrow night I will start the regimen. I have some trepidation about the dose but I also am keeping in mind that when I was on chemo before I was also undergoing concurrent radiation therapy. I will see how this goes.

That’s it for now…

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I don’t know about you, but we are bad about off-loading pictures from our digital camera. We typically do a pretty good job but over the past 6 months as you might imagine it hasn’t exactly been a huge priority. We got around to at least dumping them off and getting them up on to Shutterfly so we can get them ordered. There are some that we really wanted including when Keegan was born.

Anyway, there are a few that I thought I’d post out here that I really love. Along with many things in life, I look at so many things differently and some of these pictures just stood out so I took these out of the bunch and wanted to put them on the blog, not only for everyone to see but so I could go back and just look at them from time to time whenever I’d like to.

Site Search Tags: personal, pictures, keegan, aidan, rachael

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Quick post – I talked to my medical oncologist and we are reconsidering our approach with the pulse therapy. I mentioned in my previous post that we were moving forward with Temodar – 5 days on per month and the remainder of each month I would be off the medication. There is some research that has been uncovered that indicates that patient’s survival rates have increased by being on a daily dose of Temodar indefinitely (at least through 6 month checkpoints to see status) as opposed to the current standard of care which is the 5-day pulse therapy. There was a study done in Europe that involved patients with high-grade gliomas. These patients had glioblastoma multiforme tumors. Of these patients, half were given the 5-day pulse therapy and half were given the daily dose. Those given a daily dose instead of the 5-day pulse increased their survival rate two-fold.

The sample was small – it involved only 100 or so patients. However, the results speak for themselves and when you are dealing with what I am dealing with, you will try certain things regardless – within reason. I am in the process of switching things up. The trade-off of course is quality of life but I handled the daily dose ok before. The concern will be long-term. My white cell count may dip pretty low. WBC is what helps your body fight infection. My red cell count may also fall – red blood cells carry oxygen and nutrients to all areas of the body. The other concern is platelets. Platelets help blood to clot. They are found in the blood flowing through your blood vessels. Platelets also line the inside of the blood vessels. When low blood platelet count is present, this layer thins and tiny drops of blood can leak through the spaces made when this layer thins, causing red dots on the skin called petechiae which leads to increase bruising, bleeding from the nose, gums, etc. The gist of all of it is that everything needs to be managed but certainly these are not risks that are reason enough to not do it! Double the survival rate, at least based on this small study? You have to move forward.

I haven’t seen this research before and I’ve dug a lot of holes and searched high and low. This is new and obviously oncologists have access to research banks that we just do not. I’m very grateful I have an oncologist that is on top of this and doesn’t just move forward with the “standard of care” and floats these types of approaches in front of me.

Site Search Tags: glioma, chemotherapy, tumor, onlocology, temodar, gbm

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