Friday, July 23, 2010 @ 10:30 am.
Bayside Community Church (High School Building)
8171 Sierra College Blvd., Granite Bay, CA 95746

*Reception immediately following (also located at Bayside).

In lieu of flowers, an education fund has been created for Aidan and Keegan. 

Donations may be mailed to: R W Baird & Co. Inc., 300 University Ave. #200, Sacramento, CA 95825 (payable to Rachael Miller FBO Aidan and Keegan Miller Education Fund).

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It is with profound sadness that I’m writing this post. Mark lost his battle with brain cancer Saturday night around midnight. He died peacefully in his sleep, surrounded by family. We will all remember Mark in our way, as he reached so many people in so many areas of his life. He was a father, son, husband, brother, musician, and friend. Many of us don’t know how we will go on without him, but our comfort is that we know where he is and who he is with.

His ultimate decline was quite rapid. A little over a month ago he had several emergency room visits that were seemingly unrelated, from flu-like symptoms to severe swelling in his hand. An MRI revealed that several new tumors had grown in less than two weeks. He was walking with a cane a little over two weeks ago, and then he was in a wheel chair. These last several days he was confined to his bed. We made the decision about three weeks ago to stop aggressive treatment and utilize hospice with comfort care. He was able to be at home with family and friends in that time without having to worry about hospital visits.

Mark’s first symptom was numbness in his left side over Christmas 2006. We initially thought it was a stroke. It was later revealed to be a Grade 3 brain tumor near his motor strip. In October 2008, it degenerated to a Grade 4 glioblastoma. Since the initial diagnosis Mark had two surgeries, a full course of radiation therapy, two radiosurgery treatments with GammaKnife, multiple courses of Temodar and Avastin, and the brain tumor vaccine DCVax.

Tragically, Mark’s mother Jo passed away on Sunday. His parents had been in town for several weeks to spend time with and care for Mark.  His mother had been in good health, and this was incredibly unexpected. Just as Mark was leaving us, Jo hugged her son, paid her final respects, and within minutes she was rushed to the hospital for what appeared to be stroke-like symptoms.  The CT scan revealed she suffered a massive brain bleed and lost consciousness in a matter of minutes.  It became apparent to the neurosurgeon, along with the neuro-radiologist that the bleed was inoperable and untreatable.  Jo passed away at 1:00 in the afternoon just thirteen hours after Mark lost his battle with cancer.

It is impossible to make any sense of this tragedy. Mark was just 42 and left behind two young children. Keegan just turned 3 and Aidan will be 8 in a month. It is natural to wonder for all of us where God is in these events. How can God allow a man to be taken with a wife and two children, and take his mother the very next day? I’m not sure there is an answer, but where I saw God the most was in Mark himself. Mark’s faith had been profoundly transformed over these last three and a half years, and he had become a man convinced of God’s love and grace, even more so than before he was diagnosed with a fatal brain tumor. And though he left us far too soon, when Mark’s time came, his faith brought him Home.  In the middle of these seemingly senseless losses, we can only take comfort in knowing that Mark and Jo are in heaven together, surrounded by God’s immeasurable glory, grace, and love.

I want to thank all of you who have loved and supported Mark and myself through this difficult time. I know he reached so many of you through this blog, and you all meant so much to him. He was posting just one week ago, typing with one hand on his iPhone when he could barely move. He wanted to share every bit of his experience with all of you. You have all become like his extended family, and it brought Mark tremendous comfort and joy that he was able to learn from and help so many of you. You will not be forgotten.

Goodbye Mark and Jo. We love you and miss you.

Mark’s Memorial Service will be:

Friday, July 23, 2010 @ 10:30 am.
Bayside Community Church (High School Building)
8171 Sierra College Blvd., Granite Bay, CA 95746

In lieu of flowers, an education fund for Aidan and Keegan is being created.  Details to follow.

Blessings,

Rachael

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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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Well!, we made the move to palliative care beginning this week so visiitiing is limited and will be coordinated w/my wife. If you know Rachael just call or Email. I will have other contact info here soon.

Medically, I’m very comfortable!! I had a seizure abd apparatently the left side of my body was as firm as a board – a seizure, Enjoying family and friends!!

Her’s to life!!!

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Long time no blog post! Well, I’ve been busy with more challenges so I’m going to do my best to share the latest developments regarding my recent health setbacks. I may not have correct dates, etc. correct but they aren’t important and my apologies if some of the info is redundant with the content in a few previous posts but I’m winging it.

I fell at home on Tuesday the 15th and really smacked one of my ribs pretty good as they hit the edge of the desk in our home office. I’ve been experiencing some staggering and other issues that can all be traced to tumor growth, brain swelling and new started having some slurred speech too which has gotten much better now that I’ve started steroids to reduce brain swelling. This MRI showed growth and brain swelling (edema)

I had another MRI last Sunday, June 28th. (just 11 days from the previous scan).

The report was difficult to read – once was enough. Four new lesions were discovered. This has led us to a decision to stop treatment and bring in hospice. My life has evolved into what would now be futile attempts to treat a disease that has run its course into a life. Many of my days have been spent, lately, in PT, hospitals, labs, etc

My body and prayer is telling me the fight is done and its time to shed myself in of this fight after three years, 12 or so rounds of chemo , the experimental DCVax treatment that gave me 10 months of recurrence-free living, 2 brain surgeries, multiple recurrence 2 gamma knife treatments, etc.

It’s been a tough 3 years – options have run out but I’m ok and am at peace with my entire situation. It’s run its course. It’s time to just be comfortable.

The fact is, I’m going to heaven soon where there is no pain, sorrow or grief- only perfection, only eternal joy, happiness and as my son Aidan said the other night I will be able to do things like throw the ball to Dakota, our black lab we had to put down a few years ago. Oh and he wanted to know if I’d leave iPhone behind for him. LOL!!!

From a medical standpoint, I certainly will not look back with any regret that I didn’t seek out and utilize all treatments that God has made available to man. The only treatments I steered away from were those that would result in complete paralysis of the left side of my body or harsh chemotherapy treatments, waste away and my appearance so drastically that I would be a shell of myself. I didn’t want my kids to witness that nor was I willing to beat my body up like this. It’s a very personal decision.

From a medical perspective my doctors projection say 2-4 months but only the Lord knows. Stats are stats – I’ve written about how aggressive this disease can be.

The boys are very resilient. I’ve had some difficult discussions w/Aidan lately, but he seems to have an understanding of where I will be, which is an immense comfort.

Ok I get emotional just writing. Discharged today! Can’t wait!

One day at at at time… enjoying my family each and every day and praying that the kids and Rachael will be given the strength and peace to walk through the final steps of this journey knowing that they have the love of af of God and that for Rachael that she isn’t distracted with future issues such as finances, getting along later, impact on the kids. etc. These things will all come together.

Hebrews 11:1

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Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

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Back at ER. I woke up this AM to find my left hand extremely swollen. This presents the threat of blood clots so I will likely have an ultrasound of my hand. More challenges – where they stop no one knows. But as life throws challenges at is we xontinue to solde problems, obw T. More llatee.

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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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I hope everyone is fighting the good fight and pressing on!

As difficult as cancer can be in so many ways, its hard to see how anything positive can possibly be yielded by such a monster. But there are gifts, and I’ve written about those many times. Lately though, I’ve had a difficult time eating. Eating and ensuring I have enough fluids in my system so my kidneys are not working overtime is essential. If you are on Avastin your fluid intake must be increased significantly.

All of you, caregivers witnessing this aspect of treatment and those of you experiencing it, know the toll it can take on the body. I have felt weak, tired, and sometimes just tired of feeling tired! This cycle is hard. So what pulls us out of the vicious cycle? For me it has to be divine intervention (prayer/meditation) and trying to focus on what is good in life. How blessed we are and have been. I’ve written about simple gratitude lists. In the end, for me it can be as simple as that. It’s not about stuff, position, status, who you know, and the list goes on. We become much more acutely aware of what is truly important in our lives and more appreciative.

Second, I start digging for inspiration. I have to go into action even if its on my own. Other people can’t do it for you. It is vital to have support! But I also know that sometimes, even when I’m down I have to walk. So inspiration…

Case in point – I happened to remember a few inspirational discussions/speeches by the late, former White House Press Secretary Tony Snow. You may recall he battled colon cancer until his death in 2008.

I could not come remotely close to expressing in words what I’m going to share with you below when Chritianity Today approached him back in 2007. I think most of us have been through and shared many of the thoughts, questions and ideals that Tony describes but he laid it out so eloquently I had to share it.

This picked me up today. I hope you find it as inspirational as I do!
______

Blessings arrive in unexpected packages—in my case, cancer.

Those of us with potentially fatal diseases—and there are millions in America today—find ourselves in the odd position of coping with our mortality while trying to fathom God’s will. Although it would be the height of presumption to declare with confidence What It All Means, Scripture provides powerful hints and consolations.

The first is that we shouldn’t spend too much time trying to answer the why questions: Why me? Why must people suffer? Why can’t someone else get sick? We can’t answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer.

I don’t know why I have cancer, and I don’t much care. It is what it is—a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out.

But despite this—because of it—God offers the possibility of salvation and grace. We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face.

Second, we need to get past the anxiety. The mere thought of dying can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere.

To regain footing, remember that we were born not into death, but into life—and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many nonbelieving hearts—an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live—fully, richly, exuberantly—no matter how their days may be numbered.

Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease—smooth, even trails as far as the eye can see—but God likes to go off-road. He provokes us with twists and turns. He places us in predicaments that seem to defy our endurance and comprehension—and yet don’t. By his love and grace, we persevere. The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise.

‘You Have Been Called’

Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet; a loved one holds your hand at the side. “It’s cancer,” the healer announces.

The natural reaction is to turn to God and ask him to serve as a cosmic Santa. “Dear God, make it all go away. Make everything simpler.” But another voice whispers: “You have been called.” Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter—and has dragged into insignificance the banal concerns that occupy our “normal time.”

There’s another kind of response, although usually short-lived—an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tinny, and placed before us the challenge of important questions.

The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing though the known world and contemplating trips to what must have seemed the antipodes (Spain), shaking the dust from his sandals, worrying not about tomorrow, but only about the moment.

There’s nothing wilder than a life of humble virtue—for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do.

Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf.

We get repeated chances to learn that life is not about us—that we acquire purpose and satisfaction by sharing in God’s love for others. Sickness gets us partway there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two people’s worries and fears.

“Learning How to Live”

Most of us have watched friends as they drifted toward God’s arms not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love.

I sat by my best friend’s bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was a humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. “I’m going to try to beat [this cancer],” he told me several months before he died. “But if I don’t, I’ll see you on the other side.”

His gift was to remind everyone around him that even though God doesn’t promise us tomorrow, he does promise us eternity—filled with life and love we cannot comprehend—and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms.

Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don’t matter so that we might devote our remaining days to things that do?

When our faith flags, He throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it.

It is hard to describe, but there are times when suddenly the hairs on the back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know: Others have chosen, when talking to the Author of all creation, to lift us up—to speak of us!

This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God.

What is man that Thou art mindful of him? We don’t know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us, each and every day, lies in the same safe and impregnable place—in the hollow of God’s hand.

- Tony Snow

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Chaysse. a regular reader here left a comment about how hard it is passing the kids along to others all the time – constant treatment.  This was in response to my post “Update” on the 26th.  I wanted to ellaborate further. 

The fact is, a brain tumor changes the lives of everyone around that person –  some changes of which can be very positive.  On the other hand, because of the demands placed on your time and schedule, we’ve had a lot of shuffling around of our children to grandparents and multiple sitters over the course of the last 3 years, particularly around critical events.  We feel bad about it, just as Charysse said, but for us we know that these are the steps we need to take at this time.  You can wonder where God is in this? Our lives feel out of control – driven by events outside of our control.   You start drowning.  And I watch Rachael sink sometimes.  Everyone deals with it including children, but in a completely different way.  For me, this is so important…

I remember that we’ve been through deep valleys and storms before and the sun came back out.  If I can drive Rachael to the hospital at midnight 2 weeks after my first brain surgery which resulted in an emergency c-section (Keegan’s birth) I can keep going.   If I can do 5 weeks of radiation on my lunch hour M-F and go back to work along with chemo and just roll  - I can do this.  If I can endure another surgery and 2 gamma knife treatments boosting my net radiation dose to 103 Gy – all of this and Rachael and I are still here with God by our sides – we know that lots of appointments is a small annoyance really!  I get down – we do – and I try to remember these things and what is GOOD in life. 

I’m here.  I can throw a nerf football to my son, sitting down!  

We can feel lonely and on an island and focus on the future, gloom and doom or stay in today and share that optimism with those around us.  That’s a challenge for me lately with chroic shoulder/rotator cuff problems – another annoyance in the grand scheme. 

We all have thought, “no one can understand what it’s like to feel this way, be diagnosed with something like this, to take these drugs (fill in the blank) - to have my life.” 

Oh but we can.  All to varying degrees.  No one in the world is alone. 

No question, this stinks!! And there is no denying the range of emotions felt, for everyone touched by this diagnosis. With children it’s even more difficult.  As adults we have so much empathy because they don’t fully understand why everything is happening.  There is such a fine balance between over-communicating and striking fear into a child about the illness vs simply talking at their level, mostly driven by their cues.

Children formulate ideas so differently.  I have learned the following.  These are only my personal views: 

1. Beware of applying the complexity of my emotions and logic to my children.  For example, Aidan has asked me flat out, “Could you die from this dad?”  I told him yes but that we have great doctors and good medicine and right now dad is doing ok.  I asked him how he felt and he said it scared him.  We talked for a bit longer.  He took that and moved right on to another subject related to school.  There was the cue.  To my adult mind looking through his eyes, I’m terrified, full of anxiety, sad, etc and I could misplace those feelings by allowing them to lead me down a an unnecessary discussion about fear, for example when he may not feel any at all.  However after injecting my own fear into it all I will have certainly instilled some degree of fear in him.  All kids are different of course and with Aidan I think we have a good balance,  If my condition worsens, we talk about it.  Good thread for comments here…
2. Follow the cues – let them lead.   I have found when the questions are answered and Aidan is satisfied he let’s me know as described above.   Same applies in raising questions.  Aidan and I have “talk time” every night.  It’s then that I simply check in and ask how he is and if there is anything important he needs to talk about.  He’s a great kid – he has been honest with me about “sneaking candy” during rest time in these moments!  He and I are very close.  The tough discussions happen at these times.  Questions like,”Will your tumor ever go away?”,   “You’ve been in the hospital 6 times (I’ve been counting), does that mean you will die sooner than other people?”, ”How long do you think you will live”?  Tough questions feom a 7-year old.  

Can you imagine had we not had this time and he didn’t feel he had an outlet??   To be left as a child with these kinds of questions to grapple with is what I believe would be the ultimate failing.  Rachael and I have done our best with God’s lead to provide a comfortable, trusting space for Aidan tolet it out and be as inquisitive as he finds necessary. 

It’s easier said than done.  Communication….Open Up…Follow-Up…

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