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Blood counts, recall and fatigue

7/27/2015

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I'm in my second cycle of the new oral drug treatment.  We know it is "doing its thing" because the excruciating pain in my lower back (I actually took narcotics to be able to sleep at night) is gone and I don't have to take any pain relief now.  Additionally, my tumor markers are dropping again.  This is an indication of a positive treatment response.

One of the side effects of this treatment, though, is a lowered white cell count.  For most people, the lowered count rebounds within a week, but it took ten days for me.  As time goes on, it may shorten to a week.  All this means is that I have ten days between cycles rather than seven.

I am halfway through radiation treatments to my left hip socket.  The goal of the radiation is to kill off the tumor that is covering 60% of surface of the femoral head.  This will allow new bone to grow and reduce the risk of a hip/femoral fracture.  A fracture could require a hip replacement ... something we most definitely want to avoid.  The medical team is very optimistic that the radiation will be just as successful as it was for my neck two-and-a-half years go.  (No surgery was required then, either, due to the outstanding response to the radiation treatments.)

I have no pain ... except in my throat!  This is not classic radiation recall (which is usually a skin reaction months after radiation treatments), but could be a mental response on my part.  The radiation to my neck/throat remains the most difficult part of my treatments (with toes being a big competition for the worst!) and I could simply be "remembering" that trauma simply walking into the radiation center.  Either that or the lowered white cell count and the stress in my life are just piling on.

Radiation fatigue is very real, yet hard to explain.  It's beyond a feeling of "I need a nap" and it's not the kind of fatigue that exercise will help.  I go to bed exhausted and I wake up exhausted.  My brain is exhausted and my heart is exhausted.  Everyday tasks seem overwhelming. 

I am well supported and I am quite comfortable just sitting down and not doing much whenever possible.  My children, though, have noticed and I reminded them that we've been through this twice before so they know it doesn't last.  Two more weeks of radiation and then approximately four weeks to get full energy back. 

I use the crutch when I'm in groups of people (a kid almost knocked me down in the library!) or when I'm walking on unfamiliar ground.  It's hoped that I can abandon it completely by the end of September, if not sooner.

My dad ... he's failing ... and I'm unable to put into words my emotions about everything that is going on.  I'll just say that no matter how old you are and no matter how old your parent is, it's never easy to say goodbye.

I'm still trudging through the book of Judges.  For those who are in contact with me and who follow me on Facebook, you know what a challenge this book has been.  I probably shouldn't dwell on it much more, given my current state of fatigue and crankiness.  (Seriously, sometimes I have difficulty pulling thoughts together!  It doesn't happen very often, but when it does, I'm left feeling quite confused.)

" ... and I will be with you even until the end of time."  (Matthew 28:20b, paraphrase)
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Lessons from a thousand funerals ...

7/15/2015

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I spend a lot of time thinking about death.  I don't think this makes me a morbid person.  I'm simply acutely aware that I am going to die.  While I am hopeful that my years left are many, it is a matter of absolute fact that I am going to die, most likely, sooner than most people my age.  Death is even more on my mind as my elderly dad is in the process of crossing the veil to the other side of eternity.

As a result, I read, I ponder, I pray, I yell, I question, I cry, I laugh, I observe, I judge, I fall, I fail, I get back up, I succeed, I hate, I love, I ... do it all.  I have far more questions than answers and I'm becoming more comfortable with not knowing.  This is hard for me as I'm a personality type that likes to be grounded in fact and knowledge.  But this fact remains ... in spite of the stories of "seeing the light," or "coming back from death," no one has died for any length of time and come back to tell us about what's on the other side.

We have resurrection stories ... the most famous (besides Jesus) being that of Lazarus.  I've always wondered, though, what was Lazarus' story of his death experience?  Did no one ask him what happened in those four days he was dead?  Did no one think those four days were worth recording?  Did he go into hiding because so many people were in awe of his newly risen, celebrity status?  We have no record of his second death.

Most people are uncomfortable talking about death.  Here in North America, we moved away from death being a natural part of life and made it a "sanitary" process that happens in hospitals.  The hospice movement is changing that and more and more people are choosing to die at home under comfort care.

Frank VanderZwan is a pastor at my church fellowship.  He conducted Art's and my wedding ceremony and he baptized our children.  He's well known, though, as "the funeral guy."  Frank is the one most called to conduct funerals, and has served at over 3,000 of them.

Frank was interviewed for a sermon on "Lessons from a Thousand Funerals" and the response was so overwhelming that he wrote a blog post for it.  I'm cutting and pasting the entire blog post so that you don't have to click elsewhere.  It's good stuff.

Lessons from 3K Funerals

After the message Lessons from a Thousand Funerals was given, there was much discussion.  So many people said  “I’ve been there.”  “Thank you for talking about this”  The phrase that seems to sum up most of the interactions is. “You don’t get over it, you get through it.”   

Given that there seemed to be a hunger to talk about this topic, we’ve summarized some of the key points that people find useful so that we can reflect and share as needed.

Be real.  

You may be young, you may be strong and healthy.  But given the 100% certainty that we are exiting this stage someday, it is worthwhile to acknowledge our transient state. Our view of death will dictate our view of life.   Somewhere in our brains, we have to start thinking about this. It will speak to the quality of our lives, the foundation of our lives. How we live day to day, has so much to do with acknowledging the fact we're going to die. There is so much value in life, and life is such a precious gift.

Be authentic.  

Don’t pretend its not happening.  If you are with someone facing their own mortality, they need real connections.   When the time is right, here are two questions I always think you can ask.  It can be hard to ask "Are you afraid?"  but people will welcome the chance to be honest and say "Yes." (It’s extremely rare when someone is not.)

Be bold.  

Having given the gift of talking honestly, it is a natural (if not easy) next step to say "Are you afraid of the process of what is going to happen before you die, or are you afraid of what is going to happen after you die?" The piece before death may not be something you can help with, but the other question is something that we do have insight into.

As noted in the message Sunday, John 14 provides a compelling vision of what comes after.  Jesus says, "Don't let your hearts be troubled." or in today’s vernacular, "Hey, guys, don't worry.  Don't let your hearts be troubled. Trust in God. Trust also in me. In my Father's house are many rooms. If it weren't so, I would have told you. I'm going there to prepare a place for you. If I go and prepare a place, I will come back and bring you with me that you also may be where I am.”

The image of a welcoming friend coming to walk with us into this new place can incredibly comforting no matter the previous faith journey of the person hearing this.

Be generous.  

When someone you love is dying (or finds out they are going to die) the most valuable thing you can give them is your time.  When we come alongside them, we show how much we value them.  Make the time to be there, to bring food, music… something you know they appreciate.

But another way you can generous is to know when to let go.  They need to know that you accept that they must, and give them your blessing to do so.  It may be the hardest thing for you to give.

In Summary

To be able to walk with someone at this time of their life is to stand on holy ground. To be there and to be open to the Spirit will show you miraculous things. For those who can see this as a way they can use their spiritual gifts, we do offer up the option of exploring Stephen’s Ministry.  

We wrap up this post with some wisdom from Sir Paul McCartney’s song The End of the End (written for George Harrison as Paul walked with him through his end.)

At the end of the end
It's the start of a journey to a much better place
And this wasn't bad
So a much better place would have to be special
No need to be sad

On the day that I die, I'd like jokes to be told
And stories of old to be rolled out like carpets
That children have played on and laid on
While listening to stories of old
At the end of the end

It's the start of a journey to a much better place
And a much better place would have to be special
No reason to cry

On the day that I die, I'd like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on and laid on
While listening to songs that were sung

At the end of the end

It's the start of a journey to a much better place
And a much better place would have to be special
No reason to cry, no need to be sad
At the end of the end

Amen.

Lessons from 3K Funerals.

Follow Frank on Instagram at @fvanderzwan


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Life can't be planned ...

7/13/2015

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My dad, in his early 20's.
I was writing this post ... and it was long and drawn out ... and I simply shut it down. 

It comes down to this.  We aren't in as much control as we think we are.

My husband, two teens and I just returned from a 12-day trip where we dealt with two cancelled flights, luggage that went ahead of us, an airline cancelling our entire trip (which was, fortunately able to be reinstated), multiple work-related issues popping up that required my husband to spend too many hours to address them, and most seriously, the dying process of my beloved 84-year-old dad.  He could hang on for weeks or months, or he could be gone tomorrow.

We just don't know.

We often go through life treating it as an if/then equation.  IF we do this, THEN this will happen.

It doesn't happen that way.  

I am so incredibly grateful for the life I have today.  However, I am reminded of the verse in James that says, "What is your life? For you are a mist that appears for a little time and then vanishes." (James 4:14b, English Standard Version).

In the realm of eternity, it really doesn't matter if I live 52+ years or if I live 84+ years like my dad.  We're both going to die.  I can make all the plans I want, but I have little control as to whether or not these plans will come to fruition.

While I'm still in the book of Judges in my Bible writing project, I can't help but think ahead to the book of Ecclesiastes: 

"Besides being wise himself, the Quester also taught others knowledge. He weighed, examined, and arranged many proverbs. The Quester did his best to find the right words and write the plain truth. 11 The words of the wise prod us to live well.

They’re like nails hammered home, holding life together.

They are given by God, the one Shepherd.


But regarding anything beyond this, dear friend, go easy. There’s no end to the publishing of books, and constant study wears you out so you’re no good for anything else. The last and final word is this:

Fear God.
Do what he tells you.

And that’s it. Eventually God will bring everything that we do out into the open and judge it according to its hidden intent, whether it’s good or evil." (Ecclesiastes 12:9-14, The Message).


And what does God tell me?  What does he require of me? 

"But he’s already made it plain how to live, what to do, what God is looking for in men and women.

It’s quite simple: Do what is fair and just to your neighbor,
 be compassionate and loyal in your love, And don’t take yourself too seriously -- take God seriously.  (Micah 6:8, The Message)


I am quite the moody gal ... grateful, but saddened; happy, yet mourning.  Such is the life that just can't be planned.





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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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