Blogging in B Minor

Max Lucado’s writings are amazing. He is just real and down to earth. The following is a great example. This is an excerpt from a devotional called “Yea, Though I Walk Through The Valley of the Shadow of Death”

John 14:1-3

Don’t let your heart be troubled
Trust in God, and trust in me. There are many rooms in my Father’s house. I would not tell you this if it were not true. I am going there to prepare a room for you. After, I wiil come back and take you to be with me so that you may be wher I am.

What kind of statement is that? Trust me with your death. When you face the tomb, don’t be troubled! You get the impression that to God the grave is a no-brainer. He speaks as casually as the mechanic who says to a worried customer, “sure, the enginevneeds an overhaul, but don’t worry, I can do it.”. For us it’s an ordeal. For him it’s no big deal.

We must trust God. We must trust not only that He does what is best but that he knows what us ahead.

Good stuff

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Yesterday was a tough day.  I won’t use names to protect the anonymity of the person involved, but someone who has been just an integral part of my treatment – more in the background but has just been an angel – took her own life over the weekend.  I received a call yesterday morning.  It was a shock to everyone.  She leaves behind a teenage son whom she left a note for before she carried out what I personally view as a very selfish, self-serving act.  It may be harsh to say, because I cared about her very much, but frankly that’s what it is – straight up.  She helped Rachael and I more than anyone will ever know.  I always knew that she was there for us if there was anything we needed. 

It was hard for me to feel sadness yesterday and I’m having a hard time feeling it today.  I’m angry and frustrated by what she has done.  It came as a total shock.  She had some trials in her life just as many of us do.  She had a few relationships that went sour, some depression and other things that I talked to her at length about over lunches.  She had become a friend over the years but I along with others, including her family, never saw this coming.  I tried to lead her to God but I know she is with Him now.  That is my perspective.  I know there are differing opinions when it comes to the 6th Commandment but none of us knows what happens when a soul leaves this earth.  She was a giving, loving person with a caring heart that would help anyone.  She helped countless brain tumor patients – hundreds including patients with other neurological ailments.  There is no doubt in my mind that she is there.  It’s so unfortunate that she helped so many yet placed herself last in line and chose a permanant solution to a temporary problem.  How important it is indeed to acknowledge in life what is temporal vs eternal.   

As brain tumor survivors and from my own perspective, I could throw in the towel and quit but I can’t even wrap my mind around it.  The apostle Paul faced total despair in Asia and could have given up many times, but he held on to God.  In retrospect, there was nothing that anyone could obviously do.  I spoke to her many times as did family members and I’m sure friends – just helping her through rough spots.

For those who are believers.  We must live steadfast with God and live in today.  I know I’ve said that over and over but it is so important to me and a cornerstone of my way of life today.  For non-believers – live in today!  Romans 8:5 says “For those who live according to the flesh have their outlook shaped by the things of the flesh.  But those who live according to the Spirit have their outlook shaped by the things of the Spirit”.  The situation itself is very sad but my thoughts and prayers are for her son who will have to live with this.  What she set in motion is set.  Prayers need to go out to him and her family now dealing with the wake of sorrow and grief left behind.  You see, there is no sorrow or grieving in heaven.  Heaven is perfect.  Here on earth, however, there is plenty of that to endure.  This is a huge trial that has been created and her son and others will have to carry this.  And, the other aspect that is sad is the opportunity to allow God to work through her with patients as she did so well is now gone.  She was great at what she did.

Please pray.  Even though I’m not using names, just pray for “Mark’s caring and helpful friend who was so instrumental in his treatment over the past 3 years – for her son and that he can garner strength and hope from God, that he can be led to God and find solace, faith and comfort and that this setback will not impact his life in such a way that he will be hindered in any way.”

Finally, one of her favorite songs on my River of Faith CD was Angels of the Night which is now so ironic and pretty eerie.  I’ll just close by putting the streaming audio clip here.

Angels of the Night

Rest in peace dear.  You’ll be missed but you’re gone way too soon…

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One additional bit of information – and uplifting for me so the timing was great.  For those of you that follow the blog, you’ll recall that a fellow blog reader (and brain tumor survivor) became inspired by River of Faith and the site.  She is heavily involved in her church and handles the woman’s conference every year.

She decided to call the Women’s Conference in October of 2008 “A River of Faith” and wanted each woman attending the conference to have a copy of the CD and a lyric sheet for the song River of Faith.  We worked out a special run of CDs and just made it happen.

Anyway, she was kind enough to share the backstory with me in terms of how all of this came about and I wanted to share this with you.  When I see my music and journey as a brain tumor survivor helping people, it is so satisfying and just reinforces how God is using me.  I’m just an instrument in this whole plan.

Here are her words:

I had been having terrible headaches, dizziness, and problems with my legs. I felt like my knees were going to buckle as I felt like I was losing control. An MRI of my brain showed a problem with the Pons area. This is not something that can be fixed. The options are that it may stay stable and not change, or it could begin to flare up and grow. If that should happen, then life as I know it now will change.  At this point things are stable.

The day we went to the doctor’s office I grabbed hold of the door and as I did I heard ‘ Princess and the Pea ‘  - right then I knew that my problem was something hidden deep inside and nothing could be done. It was like God was saying ‘ this problem was as small as a pea, but you are a Princess of the King ‘.  After receiving the news, I went back to work, yes, that same day as my manager was not about to offer to work that last few hours of the day for me.  When I got home I had a short conversation with my husband and then I sat at the computer surfing the internet wondering what to do and wondering about the next woman’s conference.  The questions in my mind were ‘ would I be around for another conference? Is this going to grow fast ? ‘ etc…

I have no idea how I came across your web site. The only answer I have for that is that God Himself put your site in front of me. I listened to your music and your song ” River of Faith “  stood out in bold and I knew right away that this was to be the theme for the next conference and that the conference would be my last one. I’ve had some pretty dark times, but I believe this may have been the darkest as I sat there wondering what was to become of my family. Your music is a reminder that we all live on a river that has all kinds of turbulence, but God guides us and He’s there even if we feel lost. It’s those times we surrender all and He can speak to us and use us.

A number of ladies have told me how much they like your songs. The songs really minister to them and no matter what their situation, your songs have spoken what they have felt and has made them realize it’s ok and to keep trusting God, no matter what. Others have become closer to God – they are reading His words more and praying more. Still others are not as angry or blaming in a situation – they remember your songs and  thank God for being with them and guiding them.

I would like to thank this reader for sharing this with me.  The feedback always inspires me and adds just a little bit extra to keep everything going.

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Just a quick post – I am in a much better place today.  I woke up during the night looking forward to work!  And, I do know that God is in the middle of this.  I appreciate the comments and emails very much.  I do know it’s normal and human to feel this way.  I screamed in the car after church on Sunday!  It actually felt good.  But, today I feel better.  It felt good to put on a suit and tie, dress shoes and head into my office – a great prank someone set up upon my arrival, etc. 

I have two appointments today – one with my neurologist to discuss my medication levels going back to the issue with Lamictal and the vertigo incident and the other with my neuro-oncologist to discuss to possibility of undergoing an Avastin infusion between now and when I start the vaccine which should be in the next week to two weeks.  However, this could be prudent given the wait time so that is our topic.

Again, thanks for all of the support.  It’s much appreciated…

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You guys are great!!  I can’t tell you how touched we are with your overwhelming support.  I have received so many emails from friends, blog readers, other brain tumor survivors and people who are just believers and want to let me and my family know that they have faith and hope in our future and this surgery.  How amazing people are. 

I have a group of friends from my childhood, guys that I have literally known since I was 3-4 years old and we have stayed in touch over the years.  All of them are behind me.  People in the Church.  A friend of mine, Jake Larson, who is the Senior Pastor at Arcade Church here in Sacramento – wrote such a nice piece on their site about my trial and asked the church to pray about this.  We have friends that are offering up meals, assistance – it is amazing and we are truly grateful to everyone.   Just a prayer is great, really.

 As of now, I’m done with work.  Yesterday in my office I had a very intense focal seizure.  My left leg was involved and it got really out of hand.  A co-worker, who happens to be a great friend of mine for many years was in the office and I called him in.  I took a few Ativan and did some deep breathing and after 10 or so minutes I got myself out but I was oh so close to dialing 911.  I could not have walked out of that place myself.  I was close to the seizure I had after my 2007 surgery.

So, the impact?  I am weak in my left leg – have a bit of a limp is all.  Well, we’ll take care of that on Wednesday!  One way or the other.  If it’s all worse, then I’ll rehab it back.

So, I’m just going to hang at home, spend some time with some friends having coffee, lunch.  My family is in town this weekend and I’ll basically just rest up for the surgery.

Thank you again for all of your support.  It all means more than you know…

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It’s been awhile since I have posted – I have really been enjoying this time.  As I have said, being off of chemotherapy is great.  We don’t know what the future holds but we pray for the best and complete healing, have faith in that but also pray for strength, peace and God’s plan for us, whatever that may be.

One of the many blog readers contacted me about 3 weeks ago and she shared with me that her church is having a women’s conference in October.  She had purchased my CD at some point and it really inspired her which always shows me that the way He has used me and worked through me for this album continues to touch people which is amazing to me.  Anyway, she told me that she wanted the conference is entitled “A River of Faith” and wanted to inquire about how we could work together to provide all attendees (100+ or so) a copy of the CD.   I’ve worked with her and I’m going to do a special run and we are going to get this done.  She’d like to include the lyrics for the title cut (River of Faith) in the program which is great and of course fine with me.  I’m sure she’ll let me know how the conference goes and again, it’s amazing how my ministry is touching people.

How time flies.  Keegan is crawling all over the place and is pulling himself in the crib.  Of course cabinet locks are installed everywhere al over again (new house when we moved here in 2006) so he’ll be walking soon.

Next MRI will be October 6th.  This will be an FMRI – Functional MRI – a bit different.   When I had surgery last year this technology did not exist – only something called BrainLab.  This technology is much precise.  It will show, down to a millimeter or less, how involved the tumor is with the motor strip.  And, since I will be asked to move specific areas of my body during the scan (shoulder, arm, hand, fingers, etc), it will show what areas of the tumor (again, down to a millimeter) are involved in the motor strip, thus showing what could potentially be debulked and possibly be removed utilizing GammaKnife which typically requires a 3-4 absence from normal activities.One more note – my ANC is still low – not sure if I mentioned this.  It’s around 1200.  It will take 6 months for my immune system to fully recover.  You might recall that it got down to 900 so it’s only increased but 300 points.  A normal persons ANC is 3000 or so I’m still getting sinus issues from time to time. This next scan will be interesting.  

That’s it for now! 

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If you ever think life’s trials are too big, the struggles we face are too great, take a look at this.

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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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