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Music washes away from the soul the dust of everyday life.
- Berthold Auerbach

Hospital Saga

Complications, Medical Updates 7 Comments »

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 to ER

Chemotherapy, Complications No Comments »

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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Hospitalized

Complications, Medications, Nutrition 4 Comments »

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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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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Talking to Kids About Cancer

Family, My Story No Comments »

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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