Blogging in B Minor

I know it’s been a while since Mark’s last post and we wanted to keep everyone up to date on his status. 

Mark was discharged from the hospital on July 2nd and we are all making adjustments to a new routine. 

As Mark mentioned in one of his earlier posts, after a lot of thought and prayer, we made the decision to retain at-home hospice services.  With the last MRI report revealing more new lesions and enhancement in such a short span of time, it made the decision to utilize hospice a little bit easier.  

Mark’s stability has been a growing concern in that the use of a cane was not giving him enough support.  He is now using a wheelchair to help him get around the home safely.  We are fairly home-bound due to his mobility issues, along with the tumor progression and how that limits him.  However, we have been enjoying friends and family visiting, helping and loving on us through this challenge.  His parents, who spend their summers in Oregon, have been here the last several weeks and plan to stay on as they offer tremendous support to not just Mark, but to our entire family.  In addition, Mark’s daughter Lauren, who lives in Southern California, was able to take a leave of absence from her job and has been staying with us, helping with Mark and the boys, running countless errands, doing lots of household chores and saying yes to every favor we ask of her! 

While we wouldn’t have wished for this journey ourselves, the outpouring of support from loved ones, family, friends, and even people who barely know us have comforted us beyond words, providing critical reminders that we are not alone on this path.  No, it isn’t what we would’ve chosen, but coming to a place of acceptance and the peace that brings with it is an immense blessing I couldn’t have foreseen.   

We can’t thank all of you enough for your continuous love, support and prayers. 

All our love,

Rachael (on behalf of Mark)

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A quick update – heading downtown shortly for my first avastin infusion in about 6 weeks.  We waited until we finished the 6 weeks of vaccine injections.  Tonight I will start on temodar for 21 days straight then a 7 day break. Then I’ll go back on for 21 days and so on. 

Please pray that this treatment slows growth and that it doesn’t impact my immune system too much.  You might recall that I did 8 rounds in 2007 and finally came off because my WBC was too low and wouldn’t recover.  Strength in numbers.  I sincerely appreciate it!

A dear friend gave this to Rachael and I.  I wanted to share it with everyone.  A great reminder!

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Are you passing through a testing.
Is your pillow wet with tears?
Do you wonder what the reason,
Why it seems God never hears?
 
Why it is you have no answer
To your oft-repeated plea,
Why the heaven still is leaden
As you wait on bended knee?
 
Do you wonder as you suffer,
Whether God does understand,
And if so, why He ignores you,
Fails to hold you in His Hand?
 
Do black doubts creep in, assail you,
Fears without, and fears within,
Till your brave heart almost falters
And gives way to deadly sin?
 
All God’s testings have a purpose-
Someday you will see the light.
All He asks is that you trust Him,
Walk by faith and not by sight.
 
Do not fear when doubts beset you,
Just remember-He is near;
He will never, never leave you,
He will always, always hear.
 
Faithful is He who has promised,
He will never let you fall,
Daily will the strength be given
Strength for each and strength for all.
 
He will gladly share pain with you,
He will gladly give you peace.
Till your tired and weary body
Finds its blessed, glad release.
 
When the darkened veil is lifted,
Then, dear heart, you’ll understand
Why it is you had to suffer,
Why you could not feel His hand
 
Giving strength when it was needed,
Giving power and peace within
Giving joy thru tears and trial,
Giving victory over sin.
 
So till then just keep on trusting,
Thru the sunshine and the rain,
Thru the tears and thru the heartaches,
Thru the smiles and thru the pain
 
Knowing that our Father watches,
Knowing daily strength He’ll give,
Victory for each passing hour,
This is life, so let us live!
 
- John E. Zoller

 

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I sure need to remember this. The last four or five days I have allowed myself to stray from stable ground into the unknown and dangerous territory called tomorrow. In addition, and equally dangerous, I’ve been thinking about the past, most notably my job, “how it used to be” and other aspects of life before brain cancer.

I have written a lot about how difficult different points of this journey can be. Those of you on this plight know from your own experience. I knew that this juncture would be difficult (leaving my career and adjusting to home full-time) but I admittedly under-estimated just how difficult it would be to leave my career in the past, keep my feet firmly planted in today and make a smooth transition.

To give you a view of some of what’s going on and what I’m praying about, I just really mourn the fact that all the work to reach that certain “position in life” is over or has seemingly culminated – at least in the environment I have enjoyed for so many years. If we are to reach our goals, all of your drive, perseverence, goal-setting and ability to capitalize on opportunities must come into sync and so much more. Only then will we reach various milestones. Moving to Sacramento was a significant milestone for us. Being close to family being our first objective, securing a position that was perfect for me and being blessed with the lifestyle we have been able to enjoy has been amazing. We were blessed in Orange County but being in Sacramento w/family is all we wanted for the kids. About nine months after we moved was when I was diagnosed and we wondered why. We all wonder why, don’t we? And then I accepted it and faced it and thought “why not?”

I slipped back into it. Over the last three days I once again wondered why. This is old ground! Why on earth am I churning through this again? These are the trappings of yesterday. If you’ve read my posts, you know why I can’t work just as much as I do and the reasons that I’m doing this – my aim is 100% correct – God and my family all know this. Yes, I was passionate about my career and this is a huge adjustment for me but it’s the road that God has placed me upon. But leaving it behind is…..hard.

You see, I know that living in the past veils today. It’s akin to putting on one of those old movies that has lines and squiggles and out of focus scenes in it that blur today’s experiences. This such a difficult concept in practice. Yesterday holds many wonderful memories and also trials and adversity. They are what shape us and how God has planned our lives. Worrying about tomorrow chips away at my trust in God and also veils today but in a very different way. If I’m in a vulnerable place, worrying about things like finances, my children and their education, their financial future, all realistic given my circumstances – I have placed it on my shoulders, not in God’s capable hands . God’s big enough for all of this. Don’t get me wrong. There is a very human component here. For me there is nothing wrong with mourning or grieving my career that I am forced to walk away from because of my health. However, when I begin to lean into those feelings and they seem to overtake my day, that is when I know I have been knocked off-center. I’m sure the barometer is different for everyone.

So where does this take me? It takes me full circle back to today. Living in today because it’s the day He has made and it’s what we have. It’s all any of us have whether we have leukemia, brain tumors, or perfectly healthy lives. After praying a lot one verse stood out:

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

This is about faith, hope, strength and continuing to push the best I can. The disease may be beating me physically but it can never take who I am, what I have accomplished and will accomplish together with God and the undying love I have for my wife, children, family and friends. It will never do that and cannot ever do that – to any of us.

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I’ve now completed my second week of using VP-16.  I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently.  With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea.  I wake up just not feeling good but it goes on into the afternoon.

I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe.  I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult  It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next.  My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight.  I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much.   The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon.  I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have!  I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today.  There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment.   I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go.  For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

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All the days ordained for me were written in your book before one of them came to be. (Psalm 139:16)

How many days does anyone have left?? I don’t know and no one does, except God. As many of us have learned through the Bible, He knows the exact number of years, days, hours and seconds that we will be here on earth.

This may not seem like a very uplifting topic. In fact, most people find the topic frightening. As the brain tumor survivor, I have grown to adapt to this thought and find a lot of comfort in knowing that God has a perfect plan for me.  I will not die a day sooner or live a day longer than what has already been planned by him from the start.  In knowing this, I am relieved of the fear of death and I can fully live the life that God has planned for me. This does not mean it’s easy.  After all we are only human.  However, I can move through this trial with the One who is intimately involved in my life.

God knows me! He knows everything about me. He watches over me and my family and has proven time and time again this all to be true. Right now, we are cautiously discussing the notion of my not working so that I can spend time with my children and family — time that I might not have later at least in higher functioning state. This is not a situation where I’m being negative. This is a situation where I’m talking to God and looking to God to provide answers. My wife and I are praying and I’m seeing a pastor who are talking about it. At work, I have started discussing some options but not a serious level. This is for later. But, God always has an interesting way of communicating. My boss at work told me that he really thought that time with my family would be important. I agree with him it is only the timing of it is key. I love what I do and I garner significant satisfaction from my career. My oncologist and physical therapist both said the same thing yesterday. Then, this morning when I went outside to leave, my neighbor across the street mentioned that he saw me leaving a little bit later in the morning. I just told him I was slowing down just a little bit. He told me “don’t work too hard” and I said I know and he said again don’t work too hard. This is how it always happens. Certain cues present themselves in over a period of time they stack up one way or another this will all be sorted out and the answers will come.

In praying about surgery versus chemotherapy, we are beginning to feel that surgery is not the right direction. They hit we would take in terms of quality of life would be significant. Not only for me but for my wife and my family. I’m a pretty independent person and don’t like to be dependent on other people and this would change all of that if I’m a hemiplegic. So why not spend this time as a higher functioning father and husband. Anyway a lot more to pray about and this decision is down the road but it’s something that needs to be thought about giving my symptoms.

“Such knowledge is too wonderful for me, too great for me to understand” (Psalm 139:6, NLT), but it won’t keep me from enjoying this day and praising the One who is in charge of it.

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As usual it’s the last minute shopping and wrapping for Christmas.  This is a great time of year but it’s also so busy.  In addition,  I started back on treatment using avastin and and valcyte.  As you know, I had to take some time and stop chemo treatment after my bout with the flu to give my marrow time to generate white blood cells.  The week before last I had a DCVax injection and last Friday I went in for an avastin infusion since my counts are back up.  I feel a lot better now that I’m back on treatment using multiple agents.  I have an MRI scheduled for January 8th.  At that point we will be able to more info regarding the small area of enhancement that was seen on the MRI taken while I was in the hospital.  You may recall that MRI report indicated that there was a small area subacute ischemia.  Put simply, this is conjecture on the part of the neuroradiologist but it could be either a small TIA  that occurred in the hospital or it could be tumor.

I have spent time in physical therapy focusing on both my leg and my left arm.   Slow progress but getting there  The same holds true with my left leg.  So, I’m doing as much as I can at this point in time.

A friend of mine pointed me to this interview with Ben Stein on CBS Sunday morning.  The interview actually took place in 2005 with Charles Osgood.   He had some very thought-provoking things to say that I think are very true.  I’m going to  paste majority of this below.  When you think about it what he says is so true.  I won’t provide any commentary because it’s really not necessary.   It speaks for itself.

Also, I wanted to let all of you know that I really appreciate all of the e-mails and comments that you have left on the blog that have encouraged me through this setback.  Even though I can’t respond to all of you know that I really appreciate the encouragement and prayers.

Wishing you all happy holidays

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Herewith at this happy time of year,
a few confessions from my beating heart:

I have no freaking clue who Nick and Jessica are. I see them on the cover of People and Us constantly when I am buying my dog biscuits and kitty litter. I often ask the checkers at the grocery stores. They never know who Nick and Jessica are either. Who are they? Will it change my life if I know who they are and why they have broken up? Why are they so important? I don’t know who Lindsay Lohan is, either, and I do not care at all about Tom Cruise’s wife.

Am I going to be called before a Senate committee and asked if I am a subversive? Maybe, but I just have no clue who Nick and Jessica are. Is this what it means to be no longer young. It’s not so bad.

Next confession: I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees Christmas trees. I don’t feel threatened. I don’t feel discriminated against. That’s what they are: Christmas trees. It doesn’t bother me a bit when people say, “Merry Christmas” to me. I don’t think they are slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we are all brothers and sisters celebrating this happy time of year. It doesn’t bother me at all that there is a manger scene on display at a key intersection near my beach house in Malibu. If people want a creche, it’s just as fine with me as is the Menorah a few hundred yards away.

I don’t like getting pushed around for being a Jew and I don’t think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can’t find it in the Constitution and I don’t like it being shoved down my throat.

Or maybe I can put it another way: where did the idea come from that we should worship Nick and Jessica and we aren’t allowed to worship God as we understand Him?

I guess that’s a sign that I’m getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we knew went to.

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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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I believe I forgot to mention this.  Our son Aidan’s class is sponsoring a child in Mexico who is in need.  So, all of the students are encouraged to bring in some money once a month – a dollar or so.  Aidan works for his allowance and he has a number of chores and positive behaviors that he focuses on to earn a weekly sum. 

About a week ago, one morning he came out and told me he wanted to give some money to his teacher for this child.  I said ok bud, what do you want to give?  Mind you he’s been saving for months and he’s accumulated about $90 at this point.  He looked at me and said “this”.  In his hand was a 10 dollar bill.  I smiled and said are you sure pal?  How about 2-3 dollars?  He said no.  I said “how about 5 dollars?”  No again.  He said he wanted to contribute (tithe) $10.00 because we have lots of things that he doesn’t.  For him, that was more than 10% of what he had saved over months.  It really made me think about things.  We send Aidan to private school but on top of that, I can’t say we tithe 10%.  Of course there are many other circumstances including our medical situation – but to see a child unselfishly give $10 to another child who he doesn’t know – only that he is in need was amazing and it really made me feel good.  He never once changed his mind nor regretted his decision afterward.

Aidan is a real inspiration…

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