Blogging in B Minor

I wanted to take time out during this busy time to wish everyone visiting Happy Holidays and a very Happy New Year! For me it was an interesting time. For one, I mentioned before that it was this time last year that I had the small focal seizure that eventually led to my diagnosis. Secondly, a lot of what we did was the same which of course was great! So everything coupled together was eerily similar.

We are also praying a lot right now for Rachael’s grandmother. She was in the hospital up until Sunday with severe anemia and after a lot of tests she has been diagnosed with colon cancer. She is 86 years old but is the most wonderful person. She experienced a stroke back 6 years ago and she just never complains about anything – a truly amazing person. So we could use your prayers for her – that she can be comforted by Him as she steps through this trial in her life and find peace and strength.

Our time with family was good and we hope that yours was as well. I don’t know what 2008 holds and as I mentioned in my post on the 19th, staying in today in key. However, I am upbeat! I still have a cold that is no doubt attributed to my chemo-induced immunosuppression but it is what it is. I can’t change that but there is a lot of strength I can draw from everyone around me and through prayer which has been a mainstay.

Happy Holidays!

Subscribe by Email RSS Subscription

I believe one of the most difficult aspects of being a brain tumor survivor is in staying in today – one of the coping mechanisms if you will. In time, it’s not so much of a coping mechanism. This may be true for any of us in just living life but it becomes increasingly more important if you’ve been diagnosed with any terminal disease. Many of us may have lived our lives this way prior to being diagnosed with a brain tumor. I certainly tried to practice this. The fact is, none of us know what tomorrow holds. All of our days our numbered, it’s just that I’ve been given a number to some extent – at least I’ve been given “parameters” based on statistical analysis involving large numbers of brain tumor patients over a long period of time. Is there validity to these statistics? Sure. Do they apply to me as an individual? Not really.

I’m writing this post because it’s easy to get caught up in the frenzy of “statistics” and I do it from time to time. I read something this morning that sent me in that direction for a brief time. So, I felt it was a good idea to post this for anyone that finds themself doing this as well as a reminder for myself. Regardless of what anyone says, what any resource you read says, you are a statistic of one at the end of the day. For my particular tumor, a grade III oligoastrocytoma (which is a grade III, or malignant glioma), I know people who are 10 years out from diagnosis. Statistics say that shouldn’t be. So, the way an individual responds to treatment is different from person to person. It’s important to realize that and if I find myself wading into the pool of survival rates, I stop myself. The only reason I have is to be responsible and plan for my family (have things in order, such as life insurance, pension plans and the like) – then I am done.

Digressing to the opening topic, staying in today is the key strategy. How easy it is for any of us to travel into tomorrow, next week, next month or even a year or two from now. I can’t go there. And when I do that, I’m not enjoying what there is to enjoy today. I’m preoccupied with tomorrow, I can’t enjoy my wife and children, what today holds and I’m simply not present. The way I look at it is if I’m focused on the past I’m probably regretful about something and I can’t change it. If I’m focused on the future I’m most likely worried and anxious about something and that day hasn’t even come yet! However, if I’m focused on today I can enjoy it, I have influence over my circumstances with God’s guidance and everything is as it should be. Certainly what complicates this and makes this much more difficult is living with a brain tumor. Sometimes you feel like you have a ticking time bomb that can make your life go sideways at any time. Therefore, it’s easy to slip into that flawed thinking that takes you into the future. However, for me (being a cognitive guy!) I refocus and try to stay in today, where I should be and can be comfortable.

Subscribe by Email RSS Subscription

It has been really nice receiving emails from so many people finding my site. It feels good to give back. I’m at a point in this journey where I can give back now that I have gone through surgery, radiation w/concurrent chemo and am now on pulse therapy going into cycle #3. More significant, as I have found out looking back, is what you go through emotionally and spiritually. I have writtten that my album, River of Faith, is all about that – the songwriting took me from struggling with my circumstances to ultimately accepting them, surrendering and having faith and knowing that God’s plan will carry me through. Being able to share this testimony, even at this point with others who contact me, feels good.

I have received emails from people recently diagnosed and just beginning – people wanting to know what it’s like. I have received emails from folks having a hard time coping and just reaching out to someone else that shares their circumstances. I have communicated with solution seekers like myself – wanting to find information, research documents – whatever it may be to enhance the treatment plan. And, I have received emails from people who just are happy to find my site. You know how good that makes me feel? For a guy who just put up a site about his music – markmillermusic.org – and then added a little /blog to it which evolved into a platform to about primary brain tumors – it’s great. And for me, giving back and helping other people helps me.

On the personal front, things have been pretty good here. I’m still good in terms of being out of the radiation side effects that I was feeling up until mid-November. I do have a pretty bad cold right now which isn’t good when you are on chemo – I need to talk to my neuro-oncologist and find out if we still start up again on Thursday or not. My blood work has been great all along but typically if you have a cold or flu, it’s questionable whether or not you postpone until you are a bit better. We’ll see.

I’m due for an MRI – it’s a 60 day check. This will be the second that I will have had post radiation/chemo over that 6 week period. It should be much clearer than the first. Obviously, the key again is management and to see if it is stable. I have some anxiety but it’s in God’s hands. What can I do? Not much. I’ve prayed and followed the treatment plan! So, that is that. I’ll get into the tube as it were and we’ll see how things are.

That’s it for now but all the emails are great. I’m glad you find the site and information helpful.

Site Search Tags: chemo, radiation, brain tumor, temodar, mri, God

Subscribe by Email RSS Subscription

After feeling awful for the better part of 5 weeks, I am finally feeling better! On Thursday I was really starting to feel somewhat normal – it was a day after coming off of a week on chemotherapy so I wasn’t sure if it was tied to that or not. Of course, the last week on transitioning into a week off had no effect – I spent that weekend completely out of commission. So, I had a good weekend and actually went out for a nice dinner on Saturday night, food tasted good, I had energy and I’m not sure what to think it’s been so long but I will take it. On Sunday I played soccer in the backyard with Aidan. Saturday he and I went and picked up plants and some other items. Completely different situation…

I really have to believe at this point that this is radiation recall. How I am feeling now is more reminiscent of how I felt before on Temodar while going through the 6 weeks of radiation. I had three occasions while going through radiation that I felt this same bad feeling that I have felt over the past 5 weeks but the episodes only lasted for several days. Therefore the radiation recall theory really makes sense. I start up again on chemotherapy for a week on Thursday night so I will certainly be able to judge a lot more come the following week.

I cannot explain how good it feels to feel normal. To be disinterested in food and even have water taste bad is the most frustrating and awful experience but it comes with this. I didn’t like it but I also had to look at it as best I could positively. I don’t think I would have been able to go past the 8 week mark without moving to a 5-day pulse chemo regimen – but as it turned out that would make no difference. This is also unpredictable. I could have other radiation symptoms return – at 6 months, a year. It’s unpredictable but now I have experienced this and know what to look for.

I’m looking forward to the Thanksgiving Holiday. I’m just going to spend a quiet holiday with family. I have a lot to be thankful for. I’m blessed with many things and as our pastor has said so many times, if you have change in your pocket, a place to live and food on your table you are wealthier than 99% of the world’s population. How we can forget as we are a product of what society has created so often.

At the moment, I’m very thankful I am feeling good and we have some normalcy in life.

Subscribe by Email RSS Subscription

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.

Subscribe by Email RSS Subscription

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

Subscribe by Email RSS Subscription

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

Subscribe by Email RSS Subscription

One step backward! Isn’t that the way life seems to be sometimes? Well, I haven’t had a focal seizure for nearly 2 months now and I was at work today in a meeting and my left leg started to twitch. At first I didn’t think much of it – after all, all of my focal seizures have been confined to my left shoulder and arm. However, it was familiar to me and it got my attention. After a minute had gone by, I decided to walk out and go to my office for a few minutes and I had a slight limp – for a few steps – mainly due to the weakness that had developed. So, it was definitely happening. I just sat down and relaxed and within five minutes it had passed. It’s important to turn this stuff over. It’s important, again, to stay right here in today. Yes, I wonder what it means and contacted my doctors. My Radiation Oncologist believes it’s a breakthrough seizure. I wanted to know if he would surmise if this was indicative of growth, brain swelling as a result of radiation therapy (even though I experienced zero symptoms of this during radiation treatment) or if this was not related to it at all. He said it could be – that the radiation collectively over the 6 weeks could have irritated it. After all, it is fully involved in the primary motor cortex.

I spoke to my Medical Oncologist and she is much more conservative. She says regardless, I need to be careful driving – what might happen if I see flashing lights, a sudden collision occurs in front of me, etc. Fact is, this is my left side. My right leg/foot controls my car. She is very conservative as I said. It may get more difficult far down the line but I’m not there yet – and I refuse to put myself that far into the future yet I’m also not someone who, as anyone who has read my blog knows, buries my head in the sand. So I’ll meet with my Neurologist who is managing the seizures and we’ll talk about modifying the anti-seizure meds which is what was discussed by telephone today. The bottom line? I’m doing everything I need to do – the footwork as it were beginning with prayer. No, you don’t overreact but as I’ve said before, you have to be on top of this stuff. I personally log it all. Why? Doctors ask – they need to know and I want them to know. I don’t want to respond to that question (when was your last seizure) by saying “I think it was around 3 weeks ago but I don’t know.”

My immediate fear was the tumor is evolving. Why else would I have a seizure out of nowhere?? Well, again, dismissed. I can’t go there – that is why I am a Believer. I can turn this over to God and not carry this on my shoulders. I’m not alone here. I can’t dwell on this and look at the future and the tumor, is it evolving etc. It’s about staying in today and enjoying today. It is what it is. I have an MRI on October 1st. On October 1st I will see the film and deal with that question. Today is September 22nd and I have talked to my doctors. For the rest of today I am going to enjoy my family. I am going to play Candyland with my son. I am going to read him a Batman book before he goes to bed. I’m going to give him a bath and put a tupperware container at one end of the bath and plastic balls at the other and tell him he’s got 5 shots to make a basket and if he does he’s the champion of the world! That’s what I’m going to do….

Subscribe by Email RSS Subscription