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!

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Tags:  cancer , Christian Resources , personal , prayer

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.

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Tags:  Brain Tumor , Brain Tumor Resources , Christian , Christian Resources , God , My Story

I was saddened to learn that Dan Fogelberg, one of my favorite, if not most favorite and inspirational songwriters had passed away this morning at 6:00am. He fought a brave 3-year battle with prostate cancer. Dan Fogelberg, in my opinion, was one of the best “storytellers” of our time. His songs, such as Same Auld Lang Syne, Longer, Heart Hotels and many others were written in a way that songwriters can only hope to write one day - and he did it in a way that seemed so effortless.

I remember when I heard the news back in 2004 that he had been diagnosed with advanced prostate cancer and I was taken aback. Prostate cancer is a preventable disease (at least early detection is possible and thus, a strong chance of treating and beating it is possible) and he wasted no time in writing a very strongly worded “sermon” as he indicated on his home page at Dan Fogelberg.com that urged every man to stay on top of this and get a DRE and PSA test every year. On his birthday in 2005 I believe it was, he wrote a letter to his fans that was posted on his web site but after that there was no word from him or on his condition. I knew that he had moved back to Maine where he owned a home.

His primary residence to that point had been a sprawling ranch in Colorado called Mountain Bird Ranch. He named the ranch Mountain Bird after his last name - Fogel meaning Mountain and Berg meaning Bird. I noticed the estate went up for sale in 2005. Here are some pictures - the studio picture is beautiful - he recorded a lot here apparently - it’s sad to me to look at this.

I was able to see Dan live in 1991 and unfortunately that was the only time. He was to tour in 2004 and canceled the tour due to his diagnosis. He will be missed but his music lives on.

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Tags:  Dan Fogelberg , Music , Other Artists , songwriting

The message at church over the weekend was really good.  Of course most of the messages are great but they always have a way of hitting home.  Considering the summer we had, this was particularly meaningful and applicable even in reflecting back.  The title was “Strength for the Storms of Life” and of course covered an type of storm you might encounter in your life.  For us, I thought about everything we had been through over the summer with the emergency circumstances surrounding the birth of Keegan, my brain tumor diagnosis and subsequent surgery, the first months of having a newborn in the house in the midst of recovering from surgery with Rachael having to carry the load - it was storm neither of could have ever prepared for.

Aside from this, generally speaking, the message spoke of causes of storms in our lives - particularly those caused by our own actions, others, the natural order of the cosmos or by evil.  The message began by noting John 4:46-54 (A family in the midst of a storm).  What do we do when our world caves in?  How do we endure?  How do we stay steady in a storm?

The message moved into the solution.  People who handle storms well have developed two keys.  First, they have a faith that is real.  Hebrews 12:2  says to fix your eyes on the Lord, don’t focus on yourself or your own pain.  Also, James 5:13 says pray.  Obviously important!  Secondly, the message said that people who handle storms well have friends and family that are true.  Ecclesiastes 4:9-10 says that two are better than 1 - if you fall down, a friend helps you up.  They do this in a way that respects you, without selfish motives.

The message was delivered by a member of the congregation and he was a great speaker.  He went on the say that in a crisis there are two components - a component of “danger” and a component of “opportunity”.  I understood this and it really resonated with me.  I look at my own brain cancer in this way.  I could crawl into a hole and crumble over this, think my life is over and just check out.  Or, I can look at this as I am - take advantage of life.  It hasn’t been easy, and I’m still working on it, but I’m not crawling into a hole!

Anyway, the message was really good.  You never know what you will hear at church but it’s always something that you can take with you and apply.

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Tags:  Bible , Christian , Church

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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Tags:  Brain Tumor , chemotherapy , God , MRI , My Story , Oncologist , Temodar , tumor

It’s time for my 60 day check so I will have an MRI tomorrow morning at 8:00am. As per usual, I’ll hand-carry the films for an 11am meeting with my neurosurgeon and oncologist so we can discuss the outcome. I have some anxiety but as I’ve said before and believe in my heart, it’s all in God’s hands. There is nothing outside of everything I am doing that can change the outcome. I think it’s only human, however, to have anxiety about it. This will be a clearer view than before. The MRI on October 1st was right after 6 weeks of daily chemotherapy and 5 day a week radiation. Even though we are certain there was no enhancement (the tumor was quite stable), it is still difficult at that stage to get a clear picture of what is going on what with everything that area of the brain had been subjected to in a short period of time - surgery, radiation, chemo, etc. This MRI, although I have been through chemo treatment for 2 cycles, will be clearer.

The cold I have had has turned into a really bad cold. I was home yesterday and today. One of the worst colds I have had in a long time. I’m not sure if it’s because it is truly a bad cold or if it’s because my immune system is weaker because of the cancer and chemotherapy and as a result it’s hitting me hard. Maybe both. Nonetheless, when I see my oncologist tomorrow she may delay the start of my third cycle - we will see. A young boy was here on Saturday to play with my son and after he was here for about 10 minutes I knew I may be in for it - he had kleenex and was wiping his nose. We have told people and I am careful about exposure. I kept my distance, Lysol’d the door knobs and everything when he left! Well, it was to no avail. So, I’ll get through it but it’s something else to deal with when you are going through chemotherapy.

The last thing that has been just a bit strange lately is this sense of deja vu’ I have been feeling It was Christmastime last year that all of this started. At this time last year, everything was seemingly normal although we all know this was in my brain and I didn’t know it yet. It was the Wednesday before Xmas when I had the symptoms that we determined later to be a seizure - numbness in my left hand and wrist, a slight droop in the left side of my mouth. That is all I ever presented with - but it led to this diagnosis and I’m glad it did. If I didn’t have those symptoms this would have just grown unknowingly in my brain and knowing everything I do now, and the type of tumor this is and how it evolves, I would have likely been diagnosed with a glioblastoma multforme by the time it was detected which is what happens in the majority of the cases. So, the Holidays are a bit different for me now but are still a happy time to spend with family. I’m not the type to let an event or circumstances over shadow things.

That’s it for now. I’ll post results of the MRI on Friday or over the weekend depending on when I have time and what they are. I appreciate everyone’s support…

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Tags:  Brain Tumor , chemotherapy , GBM , MRI , oligoastrocytoma , Oncologist , Radiation Therapy , seizure , Temodar

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.

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Tags:  Brain Tumor , chemotherapy , God , MRI , My Story , Radiation Therapy , Temodar