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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Beginning last Thursday, I started experiencing flu-like symptoms. I did the best I could to get myself on my feet again io until last night (Sunday) but ended up going to Sutter Roseville Medical Center and was admitted. After being unable to ingest oral meds, let alone the limited food and fluid intake, this was the right call. Among other concerns I had was my inability to keep down oral anti-convulsants and the risk of seizures.

I was finally in a room at midnight. The good news – CT scan appears stable!! I would have ordered an MRI because there are no other comparison CT scans but it gave us a sufficient look.

My aim is suppotive care here. This is likely a virus. So, hydration, get food back into my system, meds back on-boardand basically get the car running again are all part of the plan

More to come. This will come to pass. Have to solve the ptoblem

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We still pray daily for healing and we all pray for what we believe is the best plan in life for us.  However, no one really knows.  Do you?  I don’t.  What I do know is we all have purpose and because I am faced with this, my focus lately has been on finding ways to pass on memories and ideals to my family.  Videos for the boys will be great of course.  This is my first idea though and will be the gift that keeps giving.

I’ve not resigned myself to death here!  So don’t get the wrong idea.  I’ve dusted off my pants and am ready for whatever is next but what I have is now and I’m getting this done. 

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First off, here’s a freaky image!  I want to be this next Halloween!  This look at brain anatomy  is somewhere on my blog but I thought it would be worthwhile to include it in another post.

This really explains the delicacy of the primary motor cortex which is exactly where the two tumors I have are located. The original tumor that was first discovered in January 2007 has primarily affected the area at the top – functions such as the arm, trunk and foot. The second tumor that was just discovered several weeks ago has significantly affected my hand and arm which makes sense if you look at this on MRI.

This diagram is blown out into other diagrams. For example you can find a diagram that just focuses on the face. It’s amazing.

In terms of Gamma knife, the swelling in my forehead has subsided.  It basically drops down from your forehead to your eyes and then into your cheeks.  At one point it was just above my eyebrows and Rachael said I looked like a Vulcan!  I did! It was like a huge ridge that went from one side of my face to the other.  My good looks were just starting though. Next, it dropped into my eyes and I look like I got punched out in a bar. Woo hoo! A cancer patient brawing in bars.  I walked out into the family room one morning and my son Aidan looked at me and said “you look different dad – have you looked in the mirror?”  Nice.    Alas, it’s gone

I’ve had the normal nausea associated with taking VP 16 but Zofran really helps with that. Still a bit fatigued but that is much better. Over the weekend I was pretty tired but I expected to be.  Tomorrow I’ll be going in to me with my neuro oncologist followed by another Avastin infusion.  I’ll go in for physical therapy.

With the fun stuff, we are looking at a number of options for get-aways. A few local options such as Carmel, Monterey, and other destinations on California’s central coast are convenient. We’re planning a trip right now with Aidan but were not sure where. It’s a trip that will be just for the three of us since Keegan is two and Rachael, Aidan and I have never done this before. There’s a cool safari trip that we can do overnight - you take a jeep trip through a large open area – giraffes bow down and you can touch them and there are a lot of other animals.  Then you can stay overnight in a cabin that has netting and canvas so you can hear the animals at night.  I will take lots of pictures.

God bless

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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

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After spending a lot of time looking at all of the various aspects of leaving my career, whether temporarily or permanently, we have made a decision that it’s time to walk away — at least for now.  At this point, the notion of returning doesn’t seem like an option.

When I look at what’s really important in life it boils down to several things, the core of which are God and my family, it’s a pretty simple decision. It was long ago that I had spreadsheets put together that estimated the impact of not working. We pored over information and did the due diligence required to understand how this would affect us back in 2007 (of course you all know by now how freaking organized I am!). Now that I’m using dictation software it is a lot easier to post to my blog but my deficits have increased. The essence of my decision is balancing my condition against how long I work. 

Basically, there is no way I’m going to grind this out and have no energy left to spend quality time with my family.  There are trips to take, memories to cherish and a lot more to do. I know that God is not done with me yet but no one sits at the end of their life and wishes that they would’ve worked more (as a good friend of mine put it).  It’s a hard concept to absorb if you aren’t in my position.  I never thought this way before I was faced with this but I do now.  It takes me an additional 30 to 45 minutes in the morning to get ready, driving to work with a bad left arm is concerning and not fun and generally it all makes sense.  I’m just at a jumping off point.

Don’t get me wrong. It is bittersweet. I have been very blessed in that I love what I do and gain a lot of satisfaction through my job. I wake up every morning looking forward to going to work and thrive in that environment but as much as I love it I have to walk away. Some of the guys that have relocated to work for me I have worked with for 20 years. No, it’s not that I won’t see them anymore but I just won’t be working with them on a professional level and that is what is bittersweet. Everyone that I work with.  My friends and I will still be having plenty of football parties and other get-togethers though!  Driving an organization, creating strategies, managing large projects, the politics of it all (yes, even the politics!) – I’ll miss it but I’m 110% sure that this is the right decision. I’m actually looking forward to this. I can now focus on my health and most importantly my family and treatment. At the core of all this is of course our relationship with God.

If there is one thing I’ve learned through all of this it’s that we all have trials in life. Call them problems if you’d like. If you aren’t in the middle of a problem now you are than other one to solve soon or you just came out of the problem.  They build endurance and character.   No one knows why trials of this magnitude occur. Why do young children have cancer? I don’t think any of us can answer those questions but what I do know is that the next life in eternity is a great place. There is no sorrow or grief. No worries but getting to a perfect place requires living in an imperfect place that is essentially a long lesson in humlity. I don’t know about you, but humility is something that is a lifelong piece of work!

So January 31 it is! We are now brainstorming on things we want to do sooner as opposed to later. We’d like to take some trips with the kids but certainly some without.

In terms of treatment I started  VP-16. I’m using this in conjunction with all of the other treatments that I’ve mentioned including the experimental vaccine that I started last April. Because the last MRIs showed increased enhancement we have collapsed the window of time between each MRI to 30 days from 60 days. I’ll be due for another MRI at the beginning of February and will see where we sit. I want to stay with anyone drugs for too long.  Additionally, I want to start pulling the vaccine off the shelf and use it.  The hope is that we can stabilize the growth that has taken place which at this point is small but I’ve become symptomatic, the most conspicuous of which is in my left arm.

Lastly, one request from all the readers. Because I’m having to dictate now due to my inability to type fast it’s increasingly difficult to respond to e-mails that come in rather than comments that are posted to the blog and attached to each post. Therefore, please know that I appreciate every e-mail that comes in and will certainly try to respond but well wishes, prayers and additional information that all of you wonderful people have been supporting me with are much easier to manage if they can be posted to the blog and the comments area. I hope this doesn’t sound selfish because I am so blessed to have so many who care and support me it’s just that I don’t like to receive such supportive e-mails and not respond. If they are posted in comments that are attached to a post in the blog I can respond to all of them at once in the form of a comment attached to the end.

I will provide more information once I have some changes in treatment.

God bless,

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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand.  This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days.  Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection.  I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well. 

Yesterday morning I had an MRI.  This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin.  This is an IV-based chemo that has similar side effects as temodar.  I will continue with DC VAX, Valcyte, and now carboplatin.  Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body.  If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple.  However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take.  I will have input from neurosurgical point of view later and we will start putting the picture together.

It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can.  After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime.  Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual.  I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan).  Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.

I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.

Best to all of you.

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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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