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I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day.
- E. B. White

At Peace

My Story, Support 20 Comments »

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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Current Status

Blog, Medical Updates 16 Comments »

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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Cancer Can Be a Gift?

Chemotherapy, Inspiration, Nutrition 2 Comments »

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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MRI

MRI, Medical Updates 3 Comments »

I completely forgot to provide an update regarding my MRI! It was good news. No new lesions and the areas that were enhancing in the last two scans have diminished in this scan. Everything else is stable. Less mass effect (swelling). I also haven’t had any seizures for the past several weeks.

Aside from severe shoulder pain due to left-side weakness and the typical Temodar quirks I’m doing ok. I just think the cumulative effects of radiation (which includes the two gamma knife treatments that boosted my original dose of 60Gy of radiation by 22 Gy and 16Gy respectively) have just caught up to me a bit – radiation recall as it were but I am blessed. I am 3 years out from my diagnosis and for that I am grateful

Sometimes I think we all just get immersed in treatment to a deeper degree out of necessity. For me those deeper dives if you will are difficult when they come in sucession as they have over the past few months. I know for you other survivors reading you can relate to this and “get it”.

I also know that, for the most part, dark clouds clear in time and the sun breaks through again. It may be brief but it might just be enough at that time to keep me rolling.

To those I haven’t been able to get back with yet, I’m sorry! Especially Ben!! I will be in touch.

God bless,

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UC Davis Talk

UC Davis 1 Comment »

As memtioned, I gave a presentation at the May Meeting of the UC Davis Brain Tumor Group. The subject was using iPhone apps to help manage treatment. The following videos capture the presentation if you care to watch. There is a 10 min limit with youtube so I cut it up into 3 segments – approximately 5-8 mins long each.

Also, keep in mind this is far from a professional film production! I had a podium, a PowerPoint presentation being projected on to a large screen and no mic. One annoyance is there are times when I move out of the picture to clarify items on the slides but the camera doesn’t follow – it would have been too disruptive to do so. The objective was to connect and present the information, not film it. Nonetheless, you’ll still glean most everything as if you were there.

More to come!

UC Davis Brain Tumor Talk Part 1 of 3

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UC Davis Brain Tumor Talk Part 2 of 3

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UC Davis Brain Tumor Talk Part 3 of 3

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MRI Results – April 20 2010

Medical Updates 7 Comments »

I spoke with my neuro-oncologist last night after leaving a message for her. I always ask for a CD with all of the images and know enough to be dangerous. I certainly know enough to catch certain things and I called her after seeing a particular area that looked like a new tumor.

Two new tumors! Sheesh. Come on now. When it rains it pours. When it pours, get a larger umbrella, right? Still. VERY disheartening and disappointing – Rach and I had a tough night.

There is progression with what was a small area to what is now a lesion measuring 4.5 cm by 3.1 cm by 4.6 cm. Particularly troubling to me is that there is increased involvement of the left corpus callosum. If it jumps to the left hemisphere then I can start having deficits on the right side of my body.

This behavior, not to sound unemotional and all clinical, is typical of an aggressive glioblastoma so we haven’t ever buried our heads in the sand regarding the potential reality here. However, there is a ton of fight here, it’s one day at a time and none of us are ever alone in this.

I personally walk with God. How people go about it is a personal choice. For me God is in the middle of everything – the air we breathe. He decides when it’s time. Until then, each day is a gift to spend time judiciously with my kids, family, friends and doing things that are fun! Next is a new search for trials/treatments for recurrent GBM. Starting back on Avastin in the meantime. Going in tommorow to talk strategy.

Here’s an image of the MRI. I made some notes to point out a few things related to one of the new lesions. Just click the image below to blow it up. The large area is the original tumor site. There is progression as it has recurred and grown in size based on what I know right now. I will have much more concise info tommorow

More to come. Prayers are appreciated – especially for the kids.

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Combinatorial Therapy Allows Viruses to Destroy Tumors

Brain Tumor Treatment, Research No Comments »

Web address:
     http://www.sciencedaily.com/releases/2010/04/
     100401173713.htm
 

Combinatorial Therapy Allows Viruses to Destroy Tumors

ScienceDaily (Apr. 1, 2010) — For several years, researchers have been developing a new approach to treating cancer that uses viruses to infect and kill cancer cells while leaving normal cells unharmed. Recent data have indicated that this approach, which is known as oncolytic virotherapy, has potential.

Now, Richard Vile and colleagues, at the Mayo Clinic, Rochester, have found that this approach can be combined with a standard clinical therapy to provide substantial regression and cure of tumors in mice, leading them to suggest that this combinatorial approach could be of tremendous benefit in the clinic.

Tumors that grow to a certain size need to form new blood vessels if they are to continuing growing and spread to other sites. One of the molecules that controls this new blood vessel growth, VEGF, is the target of drugs used to treat several forms of cancer. In this study, the authors found that modulating VEGF signaling, for example by transiently stopping anti-VEGF therapy in mice harboring cancer cells expressing high levels of VEGF, allowed the cells that line tumor blood vessels to be targeted and killed by viruses.

Importantly, as this approach targets the cells lining tumor blood vessels, rather than specific types of tumor cells, the authors suggest that this combinatorial approach to therapy could be used to treat a wide range of cancers.

The research appears in the Journal of Clinical Investigation.

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CNN Article – Brain Tumor Vaccines

Brain Tumor Vaccines, Press No Comments »

This is a little late but I was reminded of this today and meant to post it when I first read it.

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