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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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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Sorry I haven’t posted for a while. This has been one of the most difficult weeks we’ve had in a long time. As you may have seen by my prayer request, Rachael threw her back out last Friday. She has slowly gotten better but is just now starting to get back into the swing of things.
Thank God for family and friends. I have said time and time again that at the end of the day what really matters is family and friends. Have you ever really stopped to think about what truly matters in life? Certainly after a diagnosis like this I have had many questions including what really matters. Frankly, we don’t need all the things we have. We are blessed to have a nice home, transportation, food to feed our family, good schools and other essentials that many people in the world just do not have. I still remember when Pastor Rick Warren at Saddleback church in Southern California said “if you have a roof over your head, food in your refrigerator and a checking account you are wealthier than 98% of the world”. This is a fact. So when things go sideways, like this week when Rachael was out of commission and I’ve been out of commission in terms of being a major contributor to our household I really try to remember this.
This morning I’m feeling the full effects of the first-round of chemotherapy hitting me. Up till this point it’s been pretty easy. And by all other accounts I’m doing just fine so I’m very grateful. I’m just extremely tired. Hard to get from place to place, give myself organized, etc. I find that when the chemotherapy starts stacking up my mental acuity is impacted in this adds to the fatigue. Between cognitive endurance and simple physical endurance with the issues I have with shoulder and leg etc. I guess I hit that wall.
But guess what? I have hit so many walls in the last three years fighting brain cancer that I can’t begin to remember them all so this is no different. I have to put 1 foot in front of the other. Sometimes, I just think about my kids and I do it for them – not only to be here but to show them not to give up. Of course they’ll realize this now but they will later and that’s important to me.
I will finish this round, my first-round, tomorrow and then I’ll have next week off during which I’ll have an MRI. Then I will begin round two and will keep going from there. The MRI will give us good information as to whether I should stay on my current chemotherapy regimen which is the Avastin every two weeks and Temodar every day for 21 days a month. If the MRI isn’t moving in the right direction we may switch out Temodar another IV-based chemo or perhaps an oral search as VP-16. As always I’ll post results here.
We are praying that Rachael will continue to get better. I think it’s been tough for the kids too, particularly Aidan. He had a real serious talk with me last night and wondered if mom was it be okay he started drawing parallels to the problems I’m having with my shoulder and leg and I could see where he was going. I told him that mom just picked something up and hurt her back a little bit, she’s going to be better and that my shoulder and leg problems are from my brain tumor – that mom doesn’t have one. A huge look of relief appeared on his face. He said he was fearful something was happening to her. I felt so much for him. Just shows how much kids take in and you just dont know how they will process everything. He’s doing better today!
When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up –the flames will not consume you.” Is. 43:2 (LB)
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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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After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:
The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.
I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.
For now that’s it.
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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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Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?
For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.
In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.
I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.
Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.
Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.
More soon…
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Many of you may be wondering why I’ve been MIA for the last few weeks. Well, I’ve been in the hospital. What began as a serious flu for several days resulted in a week’s long hospital stay with my white blood cell count plunging to a low of 0.8 – considered without a doubt neutropenic. As a point of reference, the normal range is 4.0 to 12.0. I was isolated and a good 25 bags of IV antibiotics were pumped into my system via IV. It was NOT fun! It’s all flu related. The flu this year is harsh to say the least. I’m taking a bit more time off so my body can catch up but wanted to put up a post so everyone isn’t in the dark. I have others that will stand in in the future if necessary if something comes up and time gets away too much.
I’m planning to get back to normal life next week if the counts are there. Sitting around is not fun!
More to come when I have more energy…
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