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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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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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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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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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.

Site Search Tags: brain tumor, chemotherapy, god, my story, oncologist, temodar, tumor

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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…

Site Search Tags: brain tumor, chemotherapy, mri, seizure, gbm

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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

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I’m definitely back on track now and it’s such a relief. This weekend was the best weekend I have had in over 6 weeks. It was great because I felt more more myself than I have in so long – even while I was going through radiation and chemotherapy concurrently. Of course I had the break in-between the initial treatment of 4 weeks but second to that, I’m feeling good now. I think I’m becoming more acclimated to the Temodar as well. All in all this is moving in a positive direction. I’m doing a few things that I’ll document here that I think are helping:

Chemotherapy

1. In the evening, I eat dinner around 5 or 5:30pm. This allows me to have something else around 7:00pm if I want – a snack, grapes or the like. Yes, I cheat sometimes and have sweets. Sugar is not good for tumors but at the same time, I’m going to live my life and not shackle myself.
2. I don’t eat anything after 7:00pm. This allows 2 hours to elapse prior the the start of chemo. At around 9:00pm, I take Zofran, an anti-nausea medication that is used to combat the primary side effect of Temodar which is nausea. I take it with plenty of water – 8-12oz.
3. After the Zofran has been given 30 minutes to be absorbed, I take the Temodar and I go to bed.

Rest

Rest and pacing myself is important. On the weekends, I try to take at least an hour nap at some point during the day. At this point, as of today, I can do some things although I’m gaining my stamina back from going through this period of radiation side effects. Over this weekend, I ran errands, I went to the mall, I planted plants out in front of the house and did other things which was fine. When I’m working, I backed off a bit after my surgery. Before surgery, I hammered away 10 hours a day, sometimes 11 or 12. I had to pull back on that. Basically, listening to my body. Rest is important.

Diet and Food

This is my challenge. Sticking to the right foods is hard, particularly when I am really hungry. Eating fish all of the time can be, in a word, boring! So, I am trying to find different and interesting ways to cook it. I have also never been a vegetable eater! Not so healthy!! I eat them but not like I should. My physicals always come out great as does my complete blood work but I need to do better in this area. So, if you read the documentation I put together in the Library section of the site here and if you read any book and Cooking for Cancer, vegetables are important.

The main point and what is important is to eat smaller meals throughout the day. Not to eat a big breakfast, big lunch, big dinner. Snack on things and this seems to help me. Smaller portions. It’s harder to do but it helps.

Water

I drink a lot more water than I used to do. Chemotherapy dehydrates you. I have water with me wherever I go. I drink 6-8 12oz glasses a day if not more. I get a dry mouth all the time. What also helps is sugar-free gum. I chew a lot of this – it helps quench your thirst a bit and just helps with this taste you get in your mouth that is tied to chemo – can’t explain it but it helps.

Supplements

Protect Healthy Cells

Remember, chemotherapy kills cells in your body. The goal of course is to kill the cancer cells in your body (brain tumor) but unlike radiation therapy, chemotherapy doesn’t differentiate between “good cells” (healthy) and “bad cells” (cancerous) cells. Therefore, the following list contains supplements to help protect healthy cells

1. Coenzyme Q10 – may protect the heart muscle from toxic drugs such as Temodar.
2. Antioxidant nutrients – Vitamin C, selenium, mix tocopherols and mixed carotenes – as part of an antioxidant supplement to provide protection from the free radicals used to kill cancer cells (friendly fire). These should be taken only after treatment starts, when cancer cells are vulnerable
3. Green tea contains strong antioxidants, and its tannins may prevent matastasis.
   Brew yourself a cup or two every day.

To Prevent or Slow Metastasis

In brain tumor patients, metastasis is not as much of an issue as it is with other types of cancer. The likelihood of a brain tumor metastasizing to another area of the body outside of the central nervous system is quite low. However, it could spread to the spine or another area of the brain. Therefore, these supplements are designed to prevent or slow metastasis based on my research.

1. The oil in fish has EPA and DHA, which decrease cancer cells’ ability to stick to blood vessels when they try to escape. During treatment, get these fats from fish, not supplements. I have used supplements here – mainly flaxseed capsules because I have trouble eating fish all the time. Again, you’ll have to judge for yourself and do what you can do. I’m in the process of moving more fish into my diet using different preparations.
2. Eat plenty of fiber-rich foods to keep blood sugar levels even. This will help to “starve” the glucose‐hungry cancer cells. Again, sugar is a problem. I cheat from time to time – it’s not easy to cut out all sugar from your diet. Try it. Look at the labels on everything. The key here is to try and minimize it. My oncologist told me a story that made me feel better. Two patients. One of them was “good” but lived his/her life – had some foods sometimes that were sweet – cheated here and there as it were. Another patient had a husband that cracked down – NO sugar, ever. She loooooved chocolate but it was not to be found in the house. The patient who is living life and letting go a bit is still here – the other one isn’t. Does this mean anything? I don’t know. But it’s something that I thought about. Does it mean that we go out and pound a Halloween-sized bag of M&Ms?! Well, I never did before! But the answer is obviously a resounding no.
3. Decrease polyunsaturated fats, which can increase inflammation.

This post ended up being longer than I had planned! If you don’t have a brain tumor I lost you a long time ago. For those that do, I hope this is helpful in some way.

Hope those of you in the US enjoyed your Thanksgiving Holiday…and for everyone else, hope that you are well…

Site Search Tags: chemo tips, chemotherapy, brain tumor, brain tumor resources, my story, temodar, nutrition, diet

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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.

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I’m glad the holidays are here and I just finished the first week on in chemo #2 on Wednesday night so last night I slept much better – yesterday I felt better and today I’m feeling pretty good actually. I don’t have to go back on until next Thursday night so I know I will enjoy Thanksgiving dinner! I’m going to see this through to the end of this second cycle. At that point, I’ll see what the next step is based on how I feel. Again, the standard of care is the 5-day pulse. What I am doing by being on a regimen of 7-days on / 7-days off repeated twice monthly is somewhat experimental. There are studies based on small sample sizes that show increased survival rates – the studies out there are based on taking it every day. That just isn’t in the cards for me and that is clear based on my struggles here.   We decided to half-way in between.   Normal survival rates for a Grade 3 Oligoastrocytoma are 3-5 years.  Temodar on a daily regimen based on these studies (small sample sizes < 500 patients) and in GBM patients only resulted in doubling their survival rate – 6-10 years if extrapolated to a Grade 3.  It’s a bit of a stretch because again, the study was focused on Grade 4 GBM patients.  Further digressing, Grade 4 and Grade 3 gliomas are typically treated the same – with malignant therapies.  So we settled in between.  If this isn’t something that will square up with my desired quality of life, we will decide if I need to go to a 5-day pulse after weighing everything out.

I’m still trying to eat as best as I can – I call it more pushing the food in – food hasn’t tasted that great. I’m going out to dinner on Saturday night and I’m hoping that by being off for a few days it will be nice. Haven’t been out to dinner for a few months – have to try it out though. I’m also going to start juicing I think. I was talking to a friend and her son went through cancer treatment and they did a lot of juicing for him – the gist of what she was saying is when you feel as lousy as you can feel while on chemo and you don’t feel like eating, you can juice and drink the equivalent of 2 or 3 apples quite easily whereas you would never accomplish the same by way of eating. Anyway, I appreciated her input and enjoyed catching up with her.

Some comments were deleted from the blog for some reason. Not a big deal but I noticed one I posted recently had an issue. Anyway, if you notice anything off just email me.

That’s it for now…

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