Virginia
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||April 19, 2007 at 11:56pm|email it|2153 reads
 

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voice_in_dc
April 20, 2007 at 12:01am
I will pray for you...after I finish crying for you...
Pamela Michelle
April 20, 2007 at 12:01am
oh honey - please feel this hug - God puts that need in us, too feel another human's love and touch - it's ok and you are not alone as hard as you are trying to be alone, it's not gonna work - i am here and so is GOD darling - i know exactly how you feel. 
Mike n Laura
April 20, 2007 at 6:40am
well, yes, it will be ok, for you. but i completely understand the need for physical hugs. to say God's embrace can take the place of that would be ignoring one of the primary purposes of human relationships. and arms. my heart is broken for you, and i'm writing your names down on my prayer list now......  (thanks for sharing with the community, that took bravery and strength)
Kathy
April 20, 2007 at 11:21am

Dear Virginia, that's what is lacking in on-line communities - real human touch!  Realize that this message contains as real a hug as I can give from a distance!  What's great about on-line, communities, though, is the ability to pull together and pray for each other, no matter where we are physically.  I am praying for you, Virginia, as are these others, and I make a pact with you as one runner (on a much smaller scale) to another:  My 5K race tomorrow morning, I dedicate to the two of you, and you will be my prayer as I run.  May God wrap His arms around you and give you Peace.   

Virginia
April 20, 2007 at 12:45pm

Thanks everyone for praying.  While I'm still tearful I do feel much more at peace this morning.  As part of my usual workout on Friday my neighbor and I go to an indoor waterpark and walk in the "river"  Today he was exhausted and I was just feeling fragile.  So instead of fighting our way against the current for 2 miles we mostly walked with it..and floated.  Make me think of "Healing Water" and "Water of Life" the water was so soothing and comforting...had it been suffused with God rather than chlorine ... well I can't even imagine how much better that would have felt.

(((Voice)))  Thank you  I promise to make it a David day.

 SSTTR - I think loneliness, well being alone,  has been the hardest part of this journey.  Most of the time Bill's immune system is barely functioning so we have to isolate ourselves physically from freinds and family.  The hardest thing I've ever had to do was say "Please don't touch me" or "Please don't come over" when in reality those are exactly the things I DO want.

Mike n Laura - I sometimes think arms are the most important thing God gave us.

KAthy - 5Ks are NOT smaller scale!  I LOVE marathons, the distance just suits my body and my spirit.  I've done 2 5Ks in my life and you couldn't pay me enough to do another. LOL  I've a great deal of resect for people who do them a lot.  Takes 5K just for me to find my groove and loosen up so the whole of a short race is hideous for me!  Thank you so much for the prayers!

Now I better get some work done before I go play hookie.  I'll post an update as soon as we know more.

 

AngiePangie
April 20, 2007 at 1:12pm
praying for you sister
PastorDan
April 20, 2007 at 1:29pm

Virginia, reading about your training regimen reminds me of I Kings 19 when Elijah gets news that he's unable to cope with... He takes off running, until he can run no longer:

19:5 And stretching himself on the earth, he went to sleep under the broom-plant; but an angel, touching him, said to him, Get up and have some food. 19:6 And looking up, he saw by his head a cake cooked on the stones and a bottle of water. So he took food and drink and went to sleep again. 19:7 And the angel of the Lord came again a second time, and touching him said, Get up and have some food, or the journey will be overmuch for your strength. 19:8 So he got up and took food and drink, and in the strength of that food he went on for forty days and nights, to Horeb, the mountain of God.

 

A friend just stopped through my office and we prayed together that you and Bill would experience God's presence, protection, and provision (Sorry--I'm a pastor and sometimes these things just slip out!) just as tangibly as Elijah did in those days.  When you find yourself saying, "Enough of this, God!" (v.5 The Message) may you find His angels standing watch over you and Bill so that you can be renewed. In the simple act of reaching out, may you find that God is placing all that you need near to hand. May all this serve to remind you that your God is remembering you and watching over you. In Him, may you find that the journey is not "overmuch for your strength." 

And finally (still thinking of Elijah), when you come to the end of your race may you find yourself in God's most tangilble Presence, experiencing His grace and encouragement, and receiving a fresh commission for what lies ahead.

Cathy
April 20, 2007 at 1:37pm

Virgina,

I don't know what to say.  You are in my prayers and we all love you very much.  

Carebear
April 20, 2007 at 2:18pm

There's this scene in the movie Signs (we watched part of it on Sunday).. where the dad (played by Gibson) watched his son suffer an asthma attack.  They're hiding in the basement so they can't get to the medicine.  So he holds his son in front of him, close to his chest and he tells him to "breathe with me".  While the son is gasping for air, and unable to get oxygen into his lungs, the dad continues to breath deeply in and out.  "Breathe with me", "Feel my chest".. slowly but surely their breathing becomes one and the asthma attack is over. 

I totally thought of this scene when I read what you are going through.. the Father is holding you and stabilizing each breath that you have.  You are breathing with Him and it will be okay.  

Jonathan Thomas
April 20, 2007 at 5:15pm

Virginia, I am grateful that you have let us experience your tenderness and vulnerability. It is all too rare these days, and I find these occassions like healing balm for me. I will not say I know how you feel, I'm sorry, or I'll pray for you. These are very nice things to say, but they would not be from the sincerity of my heart.

I was raised with a mentally unstable and violent mother who cause grave physical harm to me, in that I still carry the scars with me, physical and otherwise. For whatever reason, I was singled out at the focus of her deranged violence. I have never known my father's name. My step-father lived with us, but only passively. He refused to get involved in my life in any real capacity because of the agreement he made with my mother when they married (they both had 5 children and wanted to discipline their own children in their own style without interference).

I grew up without a father and an emotionally out of control violent mother. I started running around and getting high at 14, spending most of my time alone. I trusted nobody and liked even fewer. I lived my entire life like this until I met Charlie James, Assistant Pastor at our small church here in Houston.

Immediately he took me under his wing, being about 40 years my senior. He began to school me in relationships, mainly of the heavenly sort, with lots of prayer, meditation, and devout obedience that reaps abundant joy. He spent every spare minute with me, coaching, counseling, guiding, caring, listening. Charlie James changed me from an angry and frightened boy into a man that could enter adult friendships and begin business success.

One year after we met we were in his home eating dinner. I just took a bit of mashed potatoes and gravy and looked up at him. And I nearly dropped my fork. I almost choked on the food as I tried to bite back a sudden sob that demanded release.

The Spirit warned me right that minute that Charlie James was about to die. He was in poor health, sure, but he was still strong as a mule and energetic, and would do anything for anyone, ministering to everyone he encountered, even store clerks and drive through workers. After an entire fatherless life I have found a man that was strong enough to be a Dad to me, and he was going to die soon.

I WAS SO FREAKIN ANGRY.

And scared.

And hurt.

And suddenly, shockingly alone.

I quickly tried to recover my composure. When he asked me what was wrong, I just motioned like I swallowed wrong, without response. But it was too late. His wife was eye-balling me. She knew too.

So my prayer changed. I began to pray, "Lord when you come to get him, please make sure he has a friend with him, make it sudden and not prolonged." One very long year later, I was with him when he breathed his last.

And it was final.

I was alone.

I've never met another man like Charlie, and now I expect I never will. I still think of him often with tears and smiles. I still need my Dad.

I will cry out for you. I will cry out like the children of Israel while they were in Egypt. I will cry out with my heart, until I have the Master's ear. And then I will whisper my desire for you.

Vicki Thomas
April 20, 2007 at 8:21pm

Virginia, due to Jonathan's comments, my heart is full and I am choking back the tears...Charlie James was my late husband. He lived that one last year after suffering his second episode of congested heart failure.

In some small way, I think I can relate to you, or perhaps not…

During that year, I was desperately holding on to my loved one with heart and hands, while at the same time grabbing God by the lapels and screaming at him with emotions that defy words. My heart was so heavy and so hurt, that there was no chasm deep enough to swallow up the pain…all I could do was gasp for air, again and again and again. Tears, day and night spilled without relief: in the bathroom at work, in the quiet dark of our bedroom, in the middle of traffic, in front of friends and strangers alike. Pride had left, and joy disappeared in melted puddles at my feet.

My mind reeled between what is known as faith and what it isn’t, and getting lost somewhere in-between. Confused, dazed, and drained, within myself I gave up on what I was supposed to be or do or say or feel. I just didn’t know how to make things be the way there were before I heard the doctor’s report that offered such a hopeless future.

At times, I felt as though I was squeezing the life out of God for my every breath. I was living as though life and death were merely a twisted, macabre dance of some unknown reality I’d never seen before, and I couldn’t untangle the two no matter how hard I tried. I was consumed with grief yet my husband was still alive. Those who knew me thought I was the one who was dying.

Where was God in all of this? Locked away in the numbness of my soul, He patiently waited for the precise moment when his comfort could penetrate the blackness of my miserable pain with the warmth of His healing forgiveness and trusting love. He understood my heartache, my helplessness, my fears, my anger, my hatred, my denial, my grief, my isolation, my defiance, my confusion…my surrender. He forgave it all and offered me his lovingkindness and tenderness of compassion. He listened, he waited, then waited again, he was faithful…he offered himself to me again, and again, and again, until grace found a way for me to receive his comforting peace in what is now, most precious to me, his loving presence.

At that time I had known the Lord for about twenty-seven years. But not the way I know him now. I cannot pretend to know what God’s will is for you and your husband. Nor do I have the words that will encourage you to great victories and dazzling testimonies, but I do have the prayers to whisper that you won’t miss the moments you will treasure for the rest of your life, no matter what happens, now or in the times to come.

I do now understand, that no matter how hard and fragile these times may be, no matter how long or how short the moments, each loving breath of life we have to share right now is all any of has, no matter what we think or refuse or chose to believe. Our only immortality is in Christ, and it is in him that we live.

My heartfelt prayers go out to you with thanksgiving and joy for the strength and courage you have today to share your burden with us, that we may lift you up before the face of God and place you and your loved ones in his tender care, trusting him for goodness and mercy to follow you all the days of your lives and for you all to dwell in the house of the Lord forever.
voice_in_dc
April 21, 2007 at 12:57am

Virginia,

Thank you for sharing one of the deepest moments of your life...deepest from the sense that it opened a window into your heart and made you oh so vulnerable to everyone.  As I read through your original comments and all the responses again, I cry out to Jesus.  I cry out in joy and thanksgiving that today there is a way that our heart's desires can be shared with brothers and sisters around the world and a passionate cry of prayer is sung out before the Lord for one who is in need.

After reading the things above, may I ask you one more question?  You mentioned one person who is walking through this with you.  Tell us about some of the others. I just read Carebear's blog on the good Samaritan. Who are some of those people in your life?  Help us love you and support you by telling us more.

If Pastor Dan's analogy to Elijah holds, it sounds like you are in the journey mentioned in verse 7.  We all know what the doctors say and they mean well - usually.  We know what the Word says...He has a plan for us, He is the same yesterday, today, and forever...He will never leave us. He holds us in His arms and says "breathe with me".  Just know that we are His body...that chest He holds you close to...and we breathe with you...every breath...one breath at a time.

Keep us posted Virginia, and we will keep you and Bill in prayer.

AngiePangie
April 21, 2007 at 4:28am

Virginia, I keep coming back to this blog.  Rereading...praying...rereading...praying.  Your friends here on mychurch are pouring out their hearts.  They are revealing their weaknesses - past and present.  They are able to use their tragedy to testify and remind you and others of the things in which our God can see us through.   What I keep reading and the Lord keeps saying is - agree with Virginia.  She cannot do this, she does not have the strength, she cannot breathe...without Me!

He wants you to know that although you are not strong enough...He is.

You cannot do this...He can AND will!

You cannot breathe...He will breathe through you and become the air you need.

I know that in the last few days and in the days to come, you will feel like " I can't...". 

"Don't...", let Him!  Let Him be everything He is through you right now.  He can do everything from helping you to breathe to scooping you up into His arms, when your legs get weak.  Others will be looking to you wondering how you are even functioning.  You will humbly and honestly tell them "It's a God-thing".

Virginia, your church family all over this nation (and perhaps through the world) are calling out to the King of Kings for supernatural strength, healing, and wisdom to come forth in you and your husband's family.  We love you sister - Angie

PastorDan
April 21, 2007 at 6:32am
3:16 All scripture is inspired by God... 

Virginia, have you ever had someone speak to you while standing so close that you could feel their breath?  The image in the Greek here is of God breathing out his Word in just that way...  May you feel this breath of God, this closeness, as the Holy Spirit leans in to speak reminders of God's presence and love and strength in the days ahead.

Toni
April 21, 2007 at 7:15am

Hi Virginia, I am putting you in my prayer book, we have prayer every sunday evening at my house, and we will pray for you, I have lost my mother in law 3 yrs ago to brain cancer and lost my father in law back in Dec. for intestinal cancer. Our thoughts and prayers are with you.

Toni <>< 

Virginia
April 21, 2007 at 7:39am

Well, today we know exactly as much about what is going to be happening in regards to Bill's chemo as we did yesterday.  Apparently there was a communication break down at the oncology clinic and the nurse who was suposed to be prepared to "educate" us was not.  All she could tell us was that she knew nothing about the drug or how it was given, and that in fact it had never been used by any of the doctors at the clinic before.  She was cheery and relaxed "We'll figure it out and someone will call you Monday."  I nearly came unglued...that long to just sit and wonder what is going to be happening to your life?  I HATE THAT!!!! 

 But I didn't scream or cry.  I whispered tiny prayers "Oh please God" and had "Just breathe" echoing in my head.  That's all I did, breathe.  As we left there I was determined to not cry until our normal Friday dinner date was over.  Especially since it will likely be our last one for a while. As we left the hospital parking lot my neighbor sent a text message to my phone asking if we were at dinner yet and could they join us.  Having the two of them with us created (as usual) a very merry meal.  It was a huge blessing to us both.

Pastor Dan - I don't think I've ever said "Enough of this God!" (If I did, would he stop?)LOL  Although I readily admit to screaming "Show me the *&^^ map!! I want to see where this ends!"  He never does, and later I'm glad for that.  I'm a little warped in that I find the hardest times in life reassuring.  Hard is what God promises us in THIS life...the bible tells us that over and over...none of this is supposed to be easy.  During times like this is when I feel my faith in God the MOST...I can't iamgine trying to get through any of this without him.

((((Jonathan)))) My childhood was very much like yours.  I was blessed to have the man who was my "Dad" always in the background teaching me there were better ways to live throughout that time and on until he died (also of a blood cancer) when I was 29 years old.  You are right, they are shoes no one else can fill.  Their presence remains in our hearts forever.

Vicki - No matter how you lose your spouse, the loss is the same.  I will cherish your prayers. Waiting and watching, knowing it coming is a horrible blessing.  A blessing because we know how precious every moment is and we don't waste them.  Our marriage is far better now that it ever was before Bill was diagnosed. Horrible because you can't avoid what's coming, and you know it. Often when we speak for the Leukemia Society we encounter people who talk about how devastating it is to be diagnosed "out of the blue" and suddenly be fighting for your life.  I know it is, it was that way with my uncle..the day he was diagnosed he was told he had 2 months and nothing could be done.  He fought hard and won 2 1/2 years.  He and others seem lucky to me...while it's a crisis, at least there is something to be done.  The only possible cure for Bill will be straight from God.  For his type of leukemia there are not yet any cures...only desparate attempts to delay death in the hope that a cure will be found.  It's not an experience I would wish on anyone.

Voice - My Good Samaritans? LOL  They are many!

Mike & Gene my next door neighbors...who are actually the world's greatest neighbors.  They show up every time there is a need.  A meal, a ride to dr appts when Bill is too sick to drive (I can no longer drive due to eye problems), taking me to church, bible study, whatever when Bill can't, even taking out the trash or picking up groceries.  Provide a place to escape and cry.  The bring huge amounts of laughter into our lives...and because they both work in small offices and are rarely around kids the are "safe" in terms of risking bringing home any illnesses Bill might catch.

The ladies from my book club who keep my brain engaged and ensure there is always something I need to be paying attention to...if only in order to have something to say at book club.

My two other online families who prayer unceasingly.

Bob (one of the Pastors at my church) and his wife Donalyn who always have hugs and just the right thing to say.  Love just glows from their smiles and reminds me even in the worst moments that God is there too.

Ladies from my church like Linda and Christie who offer meals or time to escape are much loved and appreciated even though I haven't needed to take them up on it.

My best friend, Deb, who cheers me on in building my new business, running, losing weight, everything...she believes in me with her whole heart and is always ready to listen and pray.

Carl, who prays, stands ready to fly up and hold my hand when needed.  And who plan for turning my volunteer work into a business is now creating a solid safety net for after Bill dies. Now I can work at something I am passionate about without losing a signle moment with my husband.

Dawn, who when I most needed to release of being able to run stepped in and replaced my broken treadmill with a $7000. dream machine.  Every day it brings a smile to my face and reminds me not only that God sends gifts in the most amazing ways, but of how important it is to remind people that God loves them.  I can't run a single step without being reminded I am heald tightly in God's hands.

Vicki, friend and local Team in Training (TnT)manager whose endless smiles brighten my heart and who provides us with opportunities to use this time in our lives to make a real difference to others.

The whole local TnT team who laugh, pray, and cry with us...who send cards and emails that make my husband keep fighting. Each is raising thousands of dollars for research by running marathons or doing triathlons...  Remember the song that goes "How lovely on the mountains are the feet of him..."?  These people have the most amazingly beautiful feet!

Even the anonymous folks on the prayer chain at FCC (and the not so anonymous ones) who said "We want more!" "WRITE, encourage other people" "Use that gift" who ultimately were responsible for bringing me here. 

God has surrounded me with love.

Angie - God HAS to be the one doing this...all I can do each day is look around, make note of where Christ left a path and take the first step.  If it were just ME doing this I'd have quit a long time ago.  I'm lazy, hate chaos and uncertainty, and have an intense phobia of hospitals...ROTFLMAO!!!  Only God would have chosen me for this journey, and only he can get me to the finish line.  I may scream a lot, but I will also always get up and take that first step so that he can jump in and do the rest.

It's time for me to hit the treadmill.  Miles to go before I rest today.  The it's off to Super Suppers to stock the freezer so in the coming weeks I won't have to worry about shopping or preparing meals if things get to be too much.

Thank you all for being prayer warriors!

 

voice_in_dc
April 21, 2007 at 11:24pm
Thanks for the update Virginia.  In many ways you are a very rich lady.  You are certainly a blessing to me. Please keep posting and letting us know how things proceed.
Virginia
April 23, 2007 at 11:42pm

Today finds us both emotionally exhausted ... and still waiting.

We, I, spent a long time researching it over the weekend and have faxed a list of questions to the clinic. Still no answers. The doctor has proposed a different dosing schedule than is in most of the literature I came across. Turns out that the new schedule is part of a phase 2 (definition - looks good let's try it on humans) clinical trial. That aspect makes it a bit scarier.

From other patients posting online the most frequent side effect of this drug is rapid acute neutropenia requiring hospitalization. Hmm...yeah even more scary.

I couldn't find ANY reports from patients who'd used this drug and gotten better. Everything I saw there was either no change, or the person died. Can you say terrified?

"God has a plan"  Do you have any idea how hard it is to smile and be nice when people say that?? It's as bad as people reassuring you a deceased loved one is "in a better place." Doesn't make anything one bit better. Shocked someone in church Sunday. They looked like I'd hit them with a 2x4 when they said "God will take care of everything" and I replied "That doesn't mean I have to be happy about the way He does it."Why don't people just say things like "Hey I know this has to royally suck, if you want to scream and cry go right ahead!"? Why do we Christians act as if God's plans are never supposed to be painful?

It's like after my first marathon when I was forcing myself to stand and watch for my friends to finish while my knee got ever bigger and blacker. Everyone kept saying things like "Next time" or "It doesn't matter" made me feel like I didn't have the right to be upset. Then my best friend Deb came running up, hugged me, and said "It's OK to feel like $#!* about this!" That was such a relief!!

I just want to be scared and feel like $#!* about this without any more people telling me I shouldn't, or that somehow my faith is broken if I do. I'd say my faith is growing by leaps and bounds BECAUSE I can feel like this, and still pray and sing praises, still say I love God and trust him.

 I'm taking things one minute at a time.

Voice - I am indeed a very rich lady. As painful as this period in my life is, I never stop being aware of all the blessings God has heaped upon us. I just wish it were somebody else's turn for a while. (Yeah, I know that's an awful thing to wish.)

Virginia

voice_in_dc
April 24, 2007 at 12:02am

Virginia,

People say those things because they don't know what to say.  In many cases it isn't that they are trying to patronize - they are just at a loss for words and they really, really want to say something.  I only ask that you don't discredit them because of their ignorance if their heart is in the right place. I do like your response, though....yeah, God is going to take care of everything because He is still on the throne, but, right now, you aren't liking it a whole heck of a lot. I can only imagine Stephen saying the same thing as he was being stoned...holding his head in his hands and wondering where God was at that time in his life when he needed him most.

I won't say that I understand what you are going through - I don't. I can feel your hurt, your pain, your cry...and I wish I was there to cry with you, share a up of coffee, and throw things. That is what we would do...get some old glass jars, pretend they were cancer cells, and we would shatter each and every one of them. I know it wouldn't help the situation at all, but it sure would feel good.

One minute at a time...your strength is there...He doesn't promise us tomorrow, but He has given us today. Do everything you can, then stand, Virginia. Stand firm, stomp your feet, declare your god and understand your weakness, for in your weakness, He is glorified, and you are drawn ever closer.

Jonathan Thomas
April 24, 2007 at 4:35am

Virginia, being paraplegic means I constantly deal with incontinence, which can be downright humiliating at times. The stress from the constant ongoing problems mount up like toothpicks until one day you realize there is a mountain of them you must carry. I used to complain about these aggrevations by begging God for a break, just one week. Everyone gets a vacation from work, and if being paralyzed isn't work, then I don't know what is.

Then something in me changed. Now I yell and scream. Aaaaaaaaaaaaarrrrrrrr! THIS TOTALLY FREAKIN SUCKS!!!!!!!!!! I've come to the place that I can express my emotion without sin or blame, but just allow myself to vent off the pressure. Now instead of hauling around a large mountain of toothpicks, I burn up the mound while the fire can still be easily contained.

I used to scream "It isn't fair!" until I came to the full working knowledge that life and especially the Christian life, simply isn't fair. It is unfair. Now I have resigned myself to the paralysis until the day God heals. But it doesn't mean I don't have difficult days. And on those days, I'm gonna be angry, tearful, and humiliated. And I'm going to deal with it, praise God, and keep right on going.

So you hang in there, Virginia. You are allowed to hurt and scream and cry if want. I'm with Voice, grab some breakables and start hurling. Scream your heart out. And when you're done, you will find Christ standing beside you, as He is always. He's not afraid of your emotion. 

Mike n Laura
April 24, 2007 at 5:36am

Virginia, really wish I could lend you my shoulder right now. My heart really goes out to you. I probably wouldn't say ""God will take care of everything", or anything trite sounding, because I've known people who got really offended by that. But then, honestly I probably wouldn't say anything, b/c like DC said, I wouldn't know what to say. I swear that doesn't mean I don't care!!!!!

Jonathan, you are right, the Christian life, and God, aren't fair. I've tried 1,000 different ways to teach my kids not to expect Him to be fair, b/c if they expect that then one day they will likely become disillusioned and depart from Him. Besides, what's fair about Jesus' death? Life is all about finding the joy in the midst of pain. Virginia, we continue to pray for you.....  (mike)

Virginia
April 26, 2007 at 7:14am

LOL 

Voice - I've no doubt in my mind that Stephen was thinking "Oh yeah...GREAT plan!" :)

Jonathan - Nice to know I'm not the only one who screams at God from time t time.  Many of the Christians I encounter act horrified at the idea anyone would yell at God.  I figure he is big guy, he can take anything I can dish out.

Mike - Silent hugs work for me :)

OK, I'm cheating this morning and for now just posting what I mailed to friends and family this morning.  I'll post more later.

Well I hope all this waiting for news hasn't driven you as batty as it has Bill & me. 
Yesterday we finally received answer to all the questions the proposed new chemo raised.  The doctor's answer was in effect, figure it out yourself. LOL A 19 page fax with all the studies done to date on the drug Bill will be given!  A bit more information than I wanted but I plunged in and read them all while getting my hair done yesterday.  It was very sobering, as if this journey hadn't been sobering enough already.  Ended up sitting in the salon crying.  Think I freaked out the hairdresser.
Reading them really brought home how rare a disease this is.  Most of the studies included less than 100 patients...one only had 14!  We'd known it was hard to research this type of leukemia simply because there aren't enough patients to study.  But actually seeing how small the numbers are was stunning.
Bottom line?  This chemo truly is the last, best, hope.  It's still only a shot in the dark with less than 50% of the patients showing any kind of response to it.  Only about 17% having a "compete response" (meaning normalized blood counts for at least 2 months).  Most didn't sustain their results more than a few months.  With each repeated treatment percentages of responses dropped. Initially those studied treated with the drug averaged living 340 days...those in the control group not receiving the drug 219.  "Not statistically significant" a difference according to the doctors.  Later studies dropped those number to 6 months and 5.3 months.
Obviously that began some serious discussions here last night. In the end Bill has decided to move forward with the treatment and pray for a miracle.  At one point he looked at me and asked how long I've understood his life expectancy.  He looked shocked when I said, "Six years, from a few days after you were diagnosed." He said until now he's really believed all this was "harmless" and that nothing could happen to him.
This chemo will be very dangerous, I can't even frame what I'd like you to pray for this time.  We begin Monday. 
voice_in_dc
April 26, 2007 at 9:03am

Virginia, sobering indeed. Hard to know how to pray...

Lord, I pray that you give Virginia your strength to walk through this with Bill - whatever the outcome. Please, Lord, make the bond between them so secure, so strong, that they walk in unison through it all.  Father, the thing I pray for most today is that Virginia and Bill have your peace.  None of us can understand the "whys" of all of this, so please, Lord, give them that peace that surpasses our understanding.  I pray that all involved have your wisdom. Wisdom beyond what the numbers show and studies have found. Also, I ask that you protect Bill. Even if his life is for another 5 months or 5 years, protect his system from all outside influences.  Today, we stand beside Virginia and Bill and declare Romans 8:28 in pure faith, for we can not see it ourselves.  In Jesus name we pray...

Kathy
April 26, 2007 at 7:47pm
Virginia, thank you for your updates.  I prayed for you and Bill throughout my race Saturday, and am praying for you still.  May you feel the hugs your MyChurch family is sending you!
Sue
April 26, 2007 at 8:30pm

Virginia,  There is so much already said, and I haven't had the chance to read this entire page, but please know that I am praying for you and your husband.  I am so sorry that you have to go through all of this.  I can't imagine what you are going through.

Lord,   Please send you healing touch and peace during this most difficult time.  Please "hug" Virginia like she has never been hugged before.  Please grant the doctors wisdom and direct their hands as they treat her husband.  Please cause the treatments to be effective and grant him more time and less suffering.  Please releave the pain that Virginia and her husband are going through.  Let them know, in the way only You can...that You are there and You are carrying them during this time.  In Jesus Name, Amen

Stef
April 28, 2007 at 8:58am

Thou tellest my wanderings: put thou my tears into thy bottle: are they not in thy book?

When I cry unto thee, then shall mine enemies turn back: this I know; for God is for me.     Psalm 56:8,9

tellest-(heb.)-to score w/a mark as a tally or record.

wanderings (heb.)-exile

God knows, God understands, He sees your tears, He is keeping count of them and is putting them in a bottle He has just for you, it's been written!

I will be praying for you and your husband.

Your sister in Christ, Stef :)

 

Kell4Jesus
April 28, 2007 at 9:09am

Virginia;

I feel as though I know you through your posts now.  My heart is crying out for you and your husband and all that you are going through.  All the prayers above I am in complete agreement with.  I have had my struggles and I know that in the midst of them when I really just wanted to be held by someone that understood, they would say "God has a plan..."  "All things happen for a reason..."  I understand your frustration fully.  I just want you to know that I am praying for you and your husband during this time, and that's all I will say.  I have read your words as though you were speaking them, so I pray that you can feel that you have lot's of people surrounding you just listening to you when you need to vent.  God bless you Virginia.

Dennis_oldHowe
April 29, 2007 at 12:32pm

Virginia,

I started to write something, then saw the verse from 1Thessalonians, below the box. All I can do to encourage our build you up is to say I will pray, and cry myself. When my son was injured in December I found that I really and truely ran out of prayers. If it wasn't for all the faithful of God who prayed for me i could not have made it through. rRest under the blanket of those prayers, they will be there when you run out.

Dennis

Virginia
April 30, 2007 at 12:07am

It's hard to believe its only been three days since I last posted.  Feels much longer.  Every day I've planned to come in here and not only give an update, but get to my regular blogging.  It was just too much.  Between coping with my own life, my new business, trying to keep my promise to help my nieghbor paint and floor his new home and pack up his old, and then my friend Amy passing away early Friday morning, well my cyber world was the easiest thing to set aside. 

Tonight I've whittled the 170 emails in my inbox to 27 and will finish responding in the morning.  I've shuffled Bill back off to bed and now have a little room just for myself.  So here we go.

Got frustrated Friday when once again the nurse assigned to educate us said "Oh, I haven't had a chance to really look at any info yet."  I didn't cry, but I honestly don't remember if I was even remotely polite when educating her since I had actually studied everything myself before hand.  I did point out that it shouldn't be acceptable to her to ever say thigns like that to patients.  They need to staff to at least appear well informed because they are literally being trusted with people's lives and gicing the impression it isn't important is not ok.  Afterwards we made our weekly visit to Barnes & Noble...Bill and I are both voracious readers.  I was thrilled to find that my favorite author for purely escapist reading had a new book out!  I'd thought I'd have to tote one of her old ones with me all week.  Instead I'll be relishing the new one.  Then we had a peaceful dinner at our favorite restaurant.

Saturday we dropped off our car to have the winter tires taken off.  When we picked it up we got the news it needs over $1000 of work on the brakes.  That was the tipping point.  We were going to do some repairs to it and wait until after all the chemo to try and find another car.  Now in the midst of everything else we'll be hunting for a reliable used car.  I'm not looking forward to that. 

Today Bill was too tired and weak to go to church.  He slept almost 20 hours today.  Was really nice to spend some time with him this evening.  I'm glad I tootled off to my church this morning!  While I didn't have the heart to stand and sing with everyone I held the words in my head and prayed.  Bob was preaching today and provided great blog fodder!  But you'll have to check my next entry for that. :)

One of our tasks Friday was meeting with the finance person at the oncology clinic.  Our "co-pay" for this chemo is $1500 a week.  We've filed with several groups that provide financial assistance for chemotherapy.  Please be praying that comes through.  We are still paying for his last chemo!

I've had several comments from friends lately that struck me as funny.  Not laughable, just odd really.  I don't understand why it seems amazing that I just keep walking through all this.  Doesn't really seem to be a choice to me.  God gives you a path, it's walk or sit on your butt feeling sorry for yourself...which doesn't change the path one bit.  I only ever take the first step and then say "OK God, your turn."  I figure that first step in faith is really the one that matters. 

The other comment was about how open I am with the emotional part of this and letting people know what is happening.  How could you not?!  If you don't tell people what's happening, what's in your heart, how can they be there for you??  I'm way too much of a weinie to not share all this.  If I bottled it up I'd explode.

Voice - Despite everything it was actually a very peaceful weekend.  We found lots to smile about.

Kathy - Thanks!  Guess what?!?  I got into the Goofy's MArathon & a half!!!  WOOHOOOOOO Thought I wouldn't get it this year because it was sold out.  But when I went looking for hotel info I found a marathon tour company and had bought a whole block of entries for people who book their rooms through them.  Now I'm twice as excited about training for that event. Two days, two races, THREE medals! LOL  Got to love that.

Sue - Please don't be sorry.  As hard as this path is, and as much as I hate it at times, I am NOT sorry God put me on it.  If this is what it takes for me to make manifest the glory of God then this is exactly where I want to be.  I may wish, often, for a peaceful oasis or a time out, but ultimately I'm glad that God knows my faith is big enough for the challenge.

Stef - I'm betting at this point God is yelling "Oh GREAT!  It's Virginia...BRING THE BIG BOTTLE!" ROTFLOL

Kell - I had a great break from that frustration when Donalynn (my pastor Bob's wife) sent me an email that opened "This SUCKS and I am so sad!"  Today in church Bob said he had loved it when he'd seen what she sent and that people needed to really think about what they say because phrases like "God has a plan..." just don't even fit some situations. 

Dennis - yeah, sometimes you do run out of prayers.  Mine get really short at those times "OK God" or "Please God"  I know He knows everything else in my heart, even when I can find no words to set it free.

OK, I'm off to a new entry to write more cheerful things.  I'll post again tomorrow and let you know how the first day of chemo goes.

 

Virginia

 

voice_in_dc
April 30, 2007 at 4:48am
Thanks Virginia! Appreciate you keeping us posted.
Kathy
April 30, 2007 at 6:07am
Praying for you today.
Kell4Jesus
May 01, 2007 at 3:11am

Virginia and Bill; I am praying for you and God's blessings to be upon you today and throughout the week.  In Jesus Name Amen.

 

Virginia
May 01, 2007 at 10:41pm

Thank you for the prayers!  Please keep them coming.  Bill is exhausted, but so far actually feeling pretty good.  Enough so that he spontaneously wanted to go out to dinner tonight!  It was a wonderful break for us both and lightened our hearts a great deal.

I'm trying not to feel like I'm waiting for the other shoe to drop.  When he had chemo the last time time the effects of it built over time.  As if the first doses are such a shock the body doesn't react, then does as time goes on and it tries to fight the chemicals.  For now I am just intensely thankful he feels good.  I'll take all the sleeping over throwing up any day!

Two days down, three to go...then a three week break.

Virginia

Carebear
May 01, 2007 at 11:07pm
What a wonderful update to hear.. God bless you both Virginia and Bill.
voice_in_dc
May 02, 2007 at 5:46am
Appreciate the update Viginia. Glad you had a chance for dinner with Bill.  Keep us posted. We'll keep praying.
PastorDan
May 02, 2007 at 8:24am
Still praying, Virgina.
voice_in_dc
May 03, 2007 at 6:02pm
Praying Virginia and Bill are doing well...
Virginia
May 04, 2007 at 5:19pm

Posting live from the ever so fabulous chemo clinic. my sweetie is moving away next tome. LOL Things continue to go smoothly with exhaustion being the worst side effect. Thankfully today the got the IV in easily between labwork and chemo yesterday study they poked him 7 times. The backs of his hands are solid black and blue and puffy. Makes my heart ache.

Last night Bill gathered enough strength to go speak at a recruitment meeting for Team in Training. I was so proud of him. I managed not to sob, but only because I refused to speak myself. I just knew I couldn't without completely losing my grip.

Next time.

voice_in_dc
May 04, 2007 at 6:02pm
Thanks for the update Virginia. You are both strong in the Lord!
Virginia
May 08, 2007 at 9:31pm

Hello everyone!

Bill and I have just returned from speaking at another Team in Training recruitment meeting. Never ceases to amaze me how different he is when speaking.  In his work before we married he routine spoke before thousands but I never saw him in action until last year when he began doing this.  I love watching him.

We finished out the week of chemo Friday with only minor side effects, so far so good!  We meet with his oncologist this coming Friday late in the afternoon.  Judging by his latest blood counts I'm guessing he'll end up confined to home.  Please be praying for us, home is great until you can't leave it LOL then its aggravating and claustrophobic.  Bill also seems to be developing an infection which could be very dangerous.  Please pray for a quick resolution.

We do have some praise reports!  Saturday we were able to locate a reliable used car in the price range we could afford.  Then when we got there learned that overnight the price had been lowered by $1000.  As arrangements dragged on I asked if they couldn't speed up a little explaining Bill was undergoing chemo and was getting very tired.  The guy stared at me a few minutes then said he had the owner's preapproval to sell the car for even $500 less and gave us the very bottom price! $1500 staying in the bank is a HUGE help to us right now.  That $1500 is what we have to pay as our "co-pay" for each week of treatment!  (Hopefully we'll hear soon from some of the assistance programs we applied to for help) 

Praise also that the side effects from last week do not seem to be lingering.  Bill is still tired, but nothing else. Praise too that this seasons local Team in Training members are almost finished with the season (races in June) and the team retained 93 members! That means well over $180,000 raised for the Leukemia Society!! GO TEAM GO!

Things are quiet for now...and I rejoice in that.

Virginia

Virginia
May 11, 2007 at 7:05pm
As I sit here I feel like crying. It's not even good crying, it's spoiled brat kind of crying.  Why?  We just came from an appointment with Bill's oncologist.  His blood counts took a drastic fall this week and he is now basically confined to home.  He can't go anywhere there will be more than 2-3 other people.  What he can eat is also restricted.  Only well done meats...for the man who likes rare/raw only.  Only canned fruits and veggies. He can have thick skinned fresh fruits as long as he doesn't touch the peel, I have to peel them and then set them on a plate for him. Fruits and veggies and his mainstays so this just makes him crazy.

I'd really been looking forward to attending the monthly ladies brunch tomorrow morning.  I am craving that contact!  Instead I will be speaking for the Leukemia Society in Bill's place, then spending the rest of the day at the hospital with him while he gets blood transfusions.

Tonight I have to find homes for all my plants since he can't even be around the ones that flower.  Worst of all?  Now that beautiful spring days make having the windows open a blessing...we have to close them.  At a minimum this will be life for the next two weeks.  If it's like his last chemo it will be like this for the next 6 months.

Please be praying.  Staying home is one thing ... not having a choice about it makes tempers shorter.  Pray too that all will go well with the transfusions tomorrow ...and that there is blood available.  Bill has weird rare blood type that sometimes results in delays when trying to get blood for him.

Blessed Be
Virginia
voice_in_dc
May 11, 2007 at 7:39pm
Virginia, thank you so much for the update. Praise be to God for blessing you with the car!
Staying home has to be the pits - especially just as the weather is getting good enough to be going out more, but hang in there - hopefully it will only be for a couple of weeks. I know that is easy for me to say because you are the one having to walk it out.

And, yes, I am keeping you and Bill in prayer on a daily basis as others are on this site.  Every time you share, the burden seems so great. I marvel at your ability to walk through the day, one day at a time, one step at a time...I am sure it can't be easy.

Be sure to take some "me" time...even if it is just an hour or so.  You still need it. I know Bill needs you, too, but you need your time, if only a small fraction of time. It is time when you can hear from God.  That is my way of saying "take care".
Dennis_oldHowe
May 11, 2007 at 9:35pm
Virginia,
Just to let you know I'm remembering you often.
Dennis
Jeremy Crouch
May 11, 2007 at 9:49pm