An open letter to the 'sorrowful' this Christmas:

It starts in October. We get ready for the "Hap-Happiest season of all," Christmas. The music starts playing, the ads start running, the sales flyers start coming. We put out the manger scene showing a serene and beautiful Mary hovering over a peaceful and snug baby Jesus, the animals looking on reverently. We talk about the great news of Christ’s birth, how we all should be feeling such joy and peace this time of year. And if you're not a Christian, it's just the joy and peace of the season itself.  We're all supposed to be like the little Who's in Whoville, holding hands, singing.  Presents, fellowship, happy, happy, merry, merry!!

But what if you’re not feeling the hap-happiest this Christmas? What if circumstances of your life can’t simply be covered by wrapping paper and swallowed down with the glazed ham? Is there a place at Christmas-time for sadness? Is there a place at Christmas-time for lamenting? Is there a place at Christmas-time for uncertainty?

Is it possible that the good news of Jesus’ birth has been reduced by society (and even the Church) to a “Joy to the World” cliche? Is this all there is to the Christmas story--joy and happiness?  I don't know about you, but when I think of Christmas being “the most wonderful time of year” it only succeeds in causing a struggling person to feel alienated during this season. Is it any wonder that depression increases almost two-fold during the holiday months?

But I wonder what would happen if we not only emphasized the “good” parts of the Jesus story, but also the parts that aren't so “good.” 

 Allow me to present to you some words and terms from the scriptures surrounding the birth of Christ that you won’t hear sung about this Christmas: 

Fear

Betrayal 

Divorce 

Escape 

Murder

Think about (really put yourself there!) what Mary went through when her family and friends found out she was pregnant—before she was married. 

 Think about what Joseph must’ve felt when he learned of Mary’s “betrayal.” 

 Consider the fear of being in labor with no place to birth your child. Allow me to be bold and speculate that Mary probably felt terrible about having to place God’s son in a feeding trough. 

 Imagine smelling donkey dung while you attempt to nurse your firstborn child. 

 Imagine the fear you’d feel fleeing your country because a political figure wants your child dead. 

 And imagine being a parent in Bethlehem, watching your toddler boy be slaughtered because of one man’s narcissistic obsession with power. Somehow, O Little Town of Bethlehem just doesn't seem like the right song…..

I don’t point to these scriptures because these are what should be emphasized about Christ’s birth, not at all. Emphasizing either extreme is best avoided, of course. But don’t we do a disservice to the Sovereignty of God when we fail to look at the whole story, the story that shows a whole gamete of human emotion? 

 For me, the Christmas story is ultimately about God’s sovereignty. How He orchestrated the events of Christ’s birth just perfectly, just how He wanted them. How he used Herod’s obsessive power grab, Mary’s fear, Joseph’s divorce plans, and a stinky manger, to bring about the most beautiful event in human history. We can read these few verses hundreds of years later and see the beauty of God’s sovereign plan. But for some of us, we need the whole story. We need the pain, the fear, the uncertainty, the heartbreak. We need it because we desperately need to see a God who works through them, designing something beautiful.

So if you’re not feeling like doing the jingle bell rock this year, don’t despair, God is with you. He may have you riding a donkey while you’re nine months pregnant, only to give birth later in a stinky barn with only your clueless husband to help you, but He is with you, rest assured, and He is weaving something glorious.

Merry Christmas, Hanukkah, Kwanzaa, Festivus, or whatever you celebrate this time of year. 

May the peace of God rest with you. 

Love, Kristin

Kevin is still suffering some ill-effects of the GVHD in his stomach/intestines that started a couple weeks ago.  He is on more medications now to manage it, but those meds have some nasty, unpleasant side effects.  
I wish we had a concrete and reliable measure of how much cancer killing is going on, but really, that test is the PET scan, and he can only have those every few months.  So not knowing what is truly happening inside of Kev's body is very daunting.  
He is going to work everyday, and in his typical style, battling his way through this like the badass that he is.  I'm so thankful for him and his strength.   
We're still waiting for some good news to confirm that along with this GVHD, we're getting some cancer killing done.  In the meantime, we wait.......

Go along with me on this one, and imagine this:

You're on a boat, in the middle of the night, with your friends.  The wind is buffeting the waves against your small boat, and you can feel the terrifying power of nature as you are rocked this way and that.  You desperately need to get to the other side of the lake because you're meeting your friend there, and he is waiting for you, depending on you.  
Something on the water catches your eye, and, shielding your eyes against the spray of the waves,  you see someone coming.  And this someone has not taken a boat, but actually appears to be walking on top of the water.  As the figure comes closer, you see your boat-mates pointing, their faces full of terror.  You cannot believe it--a ghost!  
But then the apparition speaks, and you realize with equal parts awe and fear that it is your friend, whom you were supposed to be meeting on shore.  
Overcome with faith, you ask if you can step onto the water with him.  He holds out his hand to you, gesturing you forward.  Boldly, you step onto the cold water.  Amazingly, you do not sink, as you take careful and cautious steps forward, toward your trusted friend.  But suddenly the brutal wind sends a large wave crashing against you, and you stumble, almost falling over.  You're sure that the water can hold you standing, but can it hold the weight of you falling?  You feel water starting to close around you and cry out for help.  Your friend is immediately there, pulling you up and back into the boat.  Terrified, you look at your friend for comfort, but he only asks you why you doubted him.  Doubt him?  You think.  It was the water I doubted.  
Hearing your own heavy breath, you realize, suddenly, that everything has gone quiet.  The wind is gone.  Your boat-mates are on their knees, weeping in praise.  This man has controlled the natural elements of this world.  With stunning clarity, you realize that doubting the water was, indeed, doubting your friend, Jesus.  

I sometimes visualize myself actually in the scenarios described in the scriptures.  It reveals to me what my true, natural tendencies are, and helps me to further understand what Jesus asks of those who those who trust Him.  The stunning thing about the above story (which is Matthew 14: 22-33) is how much faith Jesus asks us to have.  Peter was faithful enough to ask to come out onto the water, but that wasn't enough.  He had to have faith that, through Jesus, he could withstand the elements of the most unforgiving part of this world:  nature.

I want faith like that.

When I see the physical struggles that Kevin faces everyday, I feel the water coming around me.
When I read the statistics about myeloma, I feel the water coming around me.
When I see the blood tests, I feel the water coming around me.
When I see the symptoms not improving fast enough, I feel the water coming around me.

But He's looking at me, gesturing me forward, into trusting His sovereignty, his rule over all of the elements.  That he will never allow evil for evil's sake, only for our ultimate good.

Keep the faith.  Love you all,
Kristin

A few days ago, Kev began experiencing some mild to moderate digestive symptoms.  This isn't anything new, he has had these symptoms before, but this time they did not resolve like they have previously.  Instead, the symptoms worsened.
Everyone pretty much assumed it was GVHD (Graft versus Host Disease) since we knew the digestive system is a common area for this to hit, but the doctor still had to run a slew of tests to rule out infections and viruses. 
The outcome was as we expected, GVHD of the duodenum, lower, and upper intestines. 

The bad news:  The GVHD is moderately severe and needs to be put under control.  Right now his intestines aren't absorbing nutrients from food to the level they should be, so he needs to get supplements directly to his bloodstream.  A low level steroid that just coats the digestive tract isn't cutting the mustard, so he started systemic steroids in order lower the donor cells immune response. 

The good news:  The donor cells are identifying foreign substances.  This also includes--you guessed it--cancer cells.  We already see a decrease in the size of the skin plasmacytomas and one of the larger ones has actually disappeared.  This is with no other treatment! 

The "so-so" news:  We want immune response, but we don't want it to this level.  Killing cancer is great, but it has to happen at a level that doesn't kill Kev (pardon the frankness).  The inability to digest food would eventually lead to a poor outcome, obviously, so we are waiting to see how he responds to the steroids.  Hopefully they will be enough and he doesn't have to go back on serious immune-suppressants, since these would also put a halt on the level of cancer killing we're getting now.  It's a dance of the worst kind, but we're happy something is happening. 

Despite all these happenings, the doc decided to go ahead with the radiation to the affected spinal nerve in his lower back.  I'm not sure this is the best move, personally, since the radiation will go through his bowels--that are already irritated--and irritate them more.  But I'm not the doctor and they feel it's still a proactive move. 
I'm not sure at this point if we are going to go ahead still with the chemo (which is planned following the completion of radiation), it may depend on the status of the GVHD, I don't know yet. 

People are asking us if this is "good or bad."  Honestly, I think the scale tips more toward the good side, but I'll be more ready to shout that out once I see this GVHD resolve to a manageable level.  It has already improved moderately but not to the point that we can reasonably live with.

Focus the prayers around continuing to get the immune response but with a reasonable level of GVHD symptoms.  Pray that the doctors make wise decisions and that we receive continued strength and renewed hope.   We're weary, very weary. 

Someone posed the hypothetical to me recently, "so why do we believe?"  It caught me off guard when the answer I've always given: "because of the hope we have," didn't seem to capture it this time, although it is true.
A few days went by before a more comprehensive answer came:  Because I'm fully known.  He knows me truly, fully, deeply.  It is the deepest level of intimacy, completely filling and overflowing what was once a void.

How beautiful.  How amazing. 

Thanks for sticking with us.  We love you all.

Kristin

It has been determined by the doctors that Kev needs some additional chemo and radiation in order to make the fight more fair for the donor cells.  I will bullet point recent developments and the subsequent plan.

• Kev's skin GVHD has largely resolved so the docs were concerned that perhaps he was losing chimerism (the level of donor engraftment).  Test showed, however, that he is still fully engrafted, so no further donor cells will be given at this time.
• The skin plasmacytomas are not shrinking fast enough, if at all, at this time.
• An MRI showed cancer involvement in a nerve in his lower back.

Plan:

• Receive an OP chemo called Pomalidomide (technically it's immunotherapy, not chemo, since it works to boost the immune system's response to cancer cells).
• Start radiation on the nerve area that shows cancer involvement.
• Remove as much cancer as possible so the donor cells have a fair shot at working.  

The allo transplant is NOT deemed a failure just because we are undergoing additional treatment.  Ideal circumstances would've had Kev in a complete remission prior to the allo, allowing time for engraftment and immune response if/when the cancer returns.  In our case, we didn't have this, so we need to fight along with the donor cells.  

We are still fighting!!  There are still options on the table, including some chemo agents that haven't been released yet.  Kev continues to fight for his life like a gladiator and I thank God that he has made Kev so tough and resilient.  Someone without these qualities may not have made it this far.  

I am weary of this battle, as I so "subtly" indicated in my poem a few weeks ago ;-).  But a wise person recently reminded me of these words, spoken by Jesus:  if your enemy strikes your right cheek, give him your left also (Matt 5:39).  

When circumstances threaten to make me step away, I vow to make myself vulnerable again, as this is what Jesus asks of me.  It is very challenging, but if I cannot live my faith out now, under these circumstances, then what am I doing here?  NOW is the time that God has called us to, and NOW is the time that His strength shall be revealed.  

Lord, make me a vessel of your Word.  Take away my strength so others can see who truly has it.  If it is your will, please heal Kevin completely and in a way that leaves no doubt of who truly holds the power.  Take away the worldly sources that provide false hope, so that my hope rests solely in you.

Amen.

Love you all.

Kristin

We continue to fight on.  Due to the roller coaster ride of blood levels, Kev and I have decided that we are no longer going to put any faith and power in these numbers.  We have found that, quickly, they can become a false idol to bow down to.  So--I am no longer going to be posting specifics about blood levels, instead posting only when they pertain to a change in treatment course.

We have adjusted to living life with these GVHD symptoms, which are mostly skin changes and mild digestive issues.  We are grateful for no new skin plasmacytomas and continue to pray for the war being waged in Kev's body.

Overall, Kev is doing very well.  He is working daily, and, in general, sleeping better at night.  He continues to have some mild to moderate back pain, but he stays on top of it with the doctors.  He also continues with physical therapy to regain strength and general conditioning.  We are at the doctor only once per week, which is a nice thing.

There will be some more tests coming up to monitor the progress of the transplant and when we receive these results, I will do another post to update if there are any treatment changes.

I really just want to write a huge THANK YOU to all of you who have hung with us over this last year.  It is a work in progress for me learning how much to share and how much to withhold, and our wonderful support network has been so understanding.
I want to share with you another poem that I have written.  I share because I feel like regular words just aren't enough anymore.  If you care to read it, I hope it lets you in to my heart a little, and if you don't want to read it, that's okay too :-).

God bless you everyone,
Kristin

The Battle (by Kristin)

The battle is painfully long, the victories maddeningly insufficient.
What does your help look like during your obvious pursuit?
Surely your help will come how I will it!

Can war be waged amidst the white flag of surrender?
You expect a will to fight, but it must be fought laying down.  
Surely you cannot expect a victory!

How can I take up weapons to kill and yet be at peace with their fallibility?
For you smash my faith in these earthly weapons with a flick of your finger.
Where is your mercy?  Surely your mercy will come on my terms!

On my face in surrender, you forsake my permission and find a place within me where you do not dwell.
How long will you search me and find these hidden places?  Surely I'll tell you when you've received all of me!

How can I fight for life under the cloak of sovereignty?
Yes, I have prayed, "your will be done," and betrayed you.  
But surely I know your will!

My love is pierced with mistrust, thus you take me further into the fire.
I did not ask for such as this.  Surely this isn't a refining fire!

Oh, God, there seems not much left to me, must we do this?
I see where you want me, but, surely this is where you cannot be!

So here am I:  spent, broken, burned, searched, humbled.

And here is you, dwelling within a hackneyed clay pot lain at the bottom of the mire.

Yes, yes! 
Surely, here you are.

The PET scan results arrived yesterday.  They showed a "significant" increase in cancer involvement.  There was a spot on his lung (which has actually been there before--the second transplant got rid of it initially) and some involvement in his liver.  Because of the increase in disease involvement (including the re-emergence of the dreaded plasmacytomas), the doc pulled his last immune suppressant/anti-rejection drug on Friday.  In an ideal situation, this drug would be weaned down slowly. Our "hand was forced" so to speak to remove the brakes on the donor cells and let them hit the gas.  The risk of doing this is GVHD, obviously, and pretty much within 48 hours we noticed an increase in skin symptoms and mild/moderate facial swelling. 

The GVH symptoms that he is displaying are a good sign.  It means that the donor cells are responding in their "foreign" environment, thus most likely attacking the cancer cells as well.  Because of the presence of GVHD, the treatment plan right now is to wait........wait for the donor cells to do something.  Since we have visible signs of cancer re-emergence in the form of the skin plasmacytomas, the docs are watching these closely.  If he shows an increase in tumors, we may need to re-introduce some chemo in order to make the fight more fair for the donor cells.  The risk of that, however is increasing strain on his body outside of what the GVHD is already doing (plus, chemo attacks good guys too).  I don't know how long exactly we wait for the donor cells to do their work, but such as it is, we won't wait longer than 4-6 weeks if we continue to see cancer movement. 

There is a specific level (called the LD level) that is one indicator of cancer involvement and we have been watching this level rise quickly over the last two weeks or so.  Yesterday, however, on the tail of our bad news, we saw his LD level only rose 20 points.  This may possibly indicate that the cancer level is slowing down.  His other blood counts were great too (WBC, RBC, platelets, etc). 

The news that the "cancer has spread" alarmed everyone.  I have found it takes a few days to process information and sort out what is truly happening.  Here is the bottom line:  THERE IS A LOT OF HOPE.  The donor cells have just been unleashed to their full potential. 

Yes, we were/are very heartbroken by this news, as was everyone.  We knew the cancer was back, but to hear the word "significant" was like a cruel knife twist.   

I have made the choice to allow God's will in my life, as difficult as this is.  I shake my head when I hear people say Christianity is a "crutch" or a "comfort" (I once thought these things myself).  In actuality, choosing to believe the promises of our God despite all odds is the furthest thing from a crutch I can think of.  The comfort I receive is from the Holy Spirit, not the knowledge of my religion.  We will persevere.  God is going to make something beautiful. 

I love you all and may God bring us peace,
Kristin

Update: 10/24/13
LD level dropped significantly today (very promising).   Other counts went the right direction as well.

Update: 10/29/13
LD dropped 8 points... not much, but enough to continue the downward trend.   Kev noted today that some plasmacytomas feel smaller and less swollen.

I have felt this blank page calling me for a few days now, my emotions ready for some catharsis apparently.

For those who aren't on Facebook (https://www.facebook.com/takingchristsyoke), we found out on September 23rd that Kev has fully engrafted his brother's stem cells.  This is one step in the process and now the cells have to begin identifying the cancer as a foreign invader.  In order to speed this process along, the docs have pulled one (of two) anti-rejection drugs and began yesterday the process of weaning the second.  Kev continues to experience mild to moderate GVHD, including poor appetite, mild skin rash/itching, and fatigue.  The radiation did an effective job on blasting the plasmacytomas, and it's equal parts relief and fear to know that treatment is finished for now.

I'm thinking that the most effective way to continue this update would be to have a short Q&A: :-)

When will we know if this transplant is working?:  Kev will get PET scans routinely, although I don't know when his first will be--probably in a couple of months.  He is also getting his cerebrospinal fluid checked monthly.  He had this done yesterday and we should find out the results tomorrow (the last one was clear).  Be mindful that future PET scans may show active cancer and that this isn't cause for immediate alarm--remember, this transplant isn't meant to stop the cancer from coming back, it's meant to give his body a permanent way to fight it off. 

How often is Kev at the doctor?:  Kev goes to clinic now two times a week.  He usually receives magnesium infusions (2 or 3 bags) because one of his anti-rejection meds lowers this level significantly.  I swear, they are going to turn Kev into Magnito from X-Men. 
He gets his blood counts checked each time.  Some good news is that his levels are steadily rising (platelets, WBC, RBC, etc) indicating healthy bone marrow. 

Is Kev going to be getting any more chemo?  No, not at this time.  Again, the stem cells are the treatment at this point. 

Will Kev be "cured" if this works?  Currently, this word isn't used for Myeloma, but that statistic can kiss my a$$. 

When will Kev return to work?  Monday, October 14th!

If you have other questions, feel free to ask.  Things are slowing down from a treatment standpoint and I'm asking for prayer during this transition.  Sometimes the expectation that you'll feel relief during this period leads to disappointment when it doesn't happen quite the way we expect.

One of the most mind-blowing parts of being on this road as a Jesus follower was the moment I realized that faith is a choice, not a feeling. Without even realizing it, I had fallen into the same trap as many other Christians, thinking that I would feel a certain way about hard times now that I was a believer. Let me shine a light on some reality here: It has been my experience that Christians feel the exact same way as non-believers when faced with devastation. We can't feel our way into faith in the same way that we can't feel ourselves into being happy if we're not. What does that high paid shrink say to the glum-hearted?  "Try acting happy. Smile when you don't feel like it. Be nice to that telemarketer. Go out to happy hour with a friend." Make a choice to act out happiness and the feelings will follow.
Well, faith is the same way. Choosing to believe the promises and the goodness of God is the reality......and the blessings that come from walking with the Holy Spirit through the sufferings are so humbling and amazingly good that being on my knees just doesn't seem far enough. 
Consider this verse (Romans 5: 3-4) : Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Hope is put last in this order. God will get us there, but look what has to come first: suffering and character building--moving forward, clutching to the promise that God is sovereign despite all feelings. 

So next time you don't feel hopeful or joyful about Jesus or God's promises, choose to believe them anyway--God will get you there.

Thank you for allowing this blog to be a blessing to me by faithfully reading my words.  Love to you all,

Kristin   

It's been 28 days since Kev received his brother Matt's stem cells.  He is currently half-way done with radiation on the plasmacytomas, and has graduated to being able to skip some clinic days when his numbers look good.  His white blood cell count is rising steadily, along with his other counts.  They will test his level of engraftment (called chimerism "Ky-mer-ism") again in the next few days.  It was 37% 10 days ago, so we're hopeful it has gone up some more.  

The chimerism level is very good news but let me explain that an allo transplant is a very gradual process.  The donor cells have to DO something with the cancer in order for this to be successful.  He could be engrafted to 100%, but if the donor cells are just going with the flow, the cancer will move where it wants.  We need some battle going on, and this battle can take years.  In other words, the cancer will "keep trying" and the donor cells will respond for possibly many years to a lifetime.  Since the cancer is now mostly non-secreting (meaning it doesn't show up much in his blood or bone marrow anymore) the doctors will use PET scans to keep an eye on any plasmacytomas and how the donor cells are handling them. It is the hope that the radiation will take care of the short term and the donor cells can work long-term.  

Currently, both the donor and Kev's T-cells (the type of cell that fights foreign bodily things like cancer) are being supressed by anti-rejection drugs in order to keep a handle on dangerous levels of GVHD.  These drugs are being removed TODAY in order for the "war" against the cancer to begin as soon as possible.  This is not the standard practice ( it's usually after 3 months, not one) but the docs feel strongly that this is the best way since Kev's cancer is active.  They will continue to closely monitor Kev's GVHD level.  Currently his symptoms are dry mouth, some digestive issues, and fatigue...although these may not all be GVHD, it is hard to tell.  He is not out of the woods for more severe GVHD (he is at risk for up to 2 years) but so far God is responding to our prayers for mild symptoms.  It's important to remember that some GVHD is good, as it indicates that the donor cells are identifying foreign cells (which include cancer).  

We are so grateful and overjoyed with how things are going right now with this treatment.  But let me tell you that these days of "in between" have been very hard for me, personally.  Nothing extreme is happening  and days go over and over with a strange kind of new normalcy.  I don't know what is so hard about just "being," but perhaps it allows time for processing and working through things that the flesh would rather keep distracted.  A friend recently hit the nail on the head when she said, "what is it about nighttime and Sundays that is so difficult?"  

What is God trying to teach me about "being during the in between?"  Let me share something with you that is straight from my heart and blessed me greatly to write down:

Sometimes on the really hard days I daydream being at a certain place.  There is a meadow and I am alone.  I am walking and there is no hurry.  I am not hot or cold.  There are no bugs.  I feel clean air in my nostrils and my feet know where they are going.  The meadow narrows and becomes a small footpath.   I begin to hear water, and so I keep going.  I see a small stream, it is noisy, but not rushing.  

I sit down next to the stream and place my feet in the water.  I have company there, and he speaks to me from his seat on the other side of the water.  

"Kristin, come and sit by me," he says.  

"Why must I always come and find you?" I say to him.  

"Those who seek me, find me."  He answers vaguely, but I know what he means.  

I cross the stream and sit next to him.  "I'm so restless and uncomfortable.  I feel like I know the answers, yet I know nothing.  I know what peace is, but I cannot find it," I say.  

He nods and stares into the bubbling water.  

"Come and lay next to me awhile," he says. 

I lay my head on the cool grass next to him and he places his hand on my head.  I lay next to this man, feeling his hand on my head, and I cry.  This crying is not sadness or hopelessness, but an unlocking of something.  I feel that "he knows" and this allows my heart to rest.  

Thanks to everyone who gives Kev a quick text, email, or phone call with words of encouragment.  He is such an amazing man and he is the one who has to fight this everyday.  Doctors, needles, chemo, radiation, fatigue, stress.  My brain cannot fathom what he goes through.  So thank you for supporting him.  

God Bless, Kristin

The time we have been awaiting for almost 2 weeks is finally here.  Kevin began engrafting on Monday.  We know this because his blood counts are beginning to rise again.  At this time, it appears that Kev has not yet started experiencing any Graft versus Host symptoms. This can change at any time and as I mentioned before, some GVHD is good as it means that the graft is prepared to fight against the myeloma.  The symptoms of GVHD that we are watching for are intestinal issues, skin rash, and fever.  Kev continues to drive himself to clinic everyday for blood workups and required infusions.  They monitor him closely and keep a close eye on him (he loves this, let me tell you).   

The plasmacytomas continue to grow and this is very nerve wracking for us.  We spoke with radiation oncology regarding what could be done in this "meantime" period (before and during engraftment) and it was suggested that he undergo more radiation treatment, specifically surface/skin level radiation, for each specific tumor.  The rationalization, of course, is that this cancer is going to move so fast that it will be too much for the donor cells to take on.  We wait with as much patience as we can muster for something good to happen.  We take moments to thank God for keeping us out of the hospital thus far, and for providing for us financially since we are both not working at this time.  Kev is feeling "okay" right now.  His biggest complaints are being isolated, feeling tired, and lingering nausea.  He is so stinking tough, he amazes me every day.  

Please continue to pray for good engraftment and a strong immune response from the donor cells.  We desperately want this to be a successful transplant, and we cling to the hope that we know is ours.  

I would like to share with you a poem that I wrote.  I hope it blesses you in some way, as it did me in writing it.  

I asked God (By Kristin)

I asked God why good people suffer and bad people prosper.

God answered, "Indeed, Kristin, there is no one on earth who is righteous, no one who does what is right and never sins.  Those who suffer I speak to in their suffering and affliction."   

I asked God why Kevin got sick.  

God answered, "You are my heirs.  You share in my sufferings so that you may also share in my glory.  Your present sufferings are not worth comparing with the glory that will be revealed."

I asked God why Kevin hasn't been healed.

God answered, "Trust me with all your heart, and lean not on your own understanding.  Suffering produces perseverance; perseverance, character; and character, hope."

I asked God how this will end.

God answered, "You of little faith, why are you so afraid?"

I asked God when this will end.

He answered, "I offer you all power according to my glorious might so that you might have great endurance and patience.  When anxiety is great within you, let my consolation bring you joy."

I asked God why this continues to persist.

God answered, "Only I know the plans I have for your family.  Plans to prosper you and not to harm you, plans to give you hope and a future."
I asked God, what about our children, why must they suffer this too?
God answered, "I am El Shaddai, God Almighty, more than enough.  No one can snatch them out of my hand."

I asked God if I will ever be happy again.

God answered, "Why are you so afraid?  Do you still have no faith?  I will yet fill your lips with laughter and your mouth with shouts of joy."

I asked God if He was really there.

God answered, "I am the Alpha and the Omega, who is, who was, and who is to come, the Almighty.  I am with you always, until the very end of the age."

Love, Kristin

Biblical References (in order):  Ecc 7:20, Job 36:15, Rom 8:17-18, Prov 3:5, Rom 5:3, Matt 8:26, Col 1:11, Psa 94:19, Jer 29:11, Gen 17:1, John 10:29, Matt 14:31, Job 8:21, Rev 1:8,Matt 28:20

(Disclaimer:  I am not a biblical scholar.  Some verses I have taken out of context to suit this poem.  I have taken liberties with the verbiage of the scripture in order to suit my writing.)

Yesterday, as my girls and I were playing outside, I noticed that a hummingbird had flown into our garage.  He was banging and banging that fragile little beak against the glass, obviously not understanding why he could see freedom, but not get there.  Poor, pathetic creature, I thought, and grabbed our pool skimmer from the rack.  I reached up with the long skimmer, attempting to shepard the bird in the opposite direction--towards real freedom, but he began to panic more and increased his velocity against the window.  I started to talk to him, "calm down, birdie, you're going to kill yourself doing that.  Turn around, come on, turn around."

 "Mom," said Bri, my 5 year old, "why isn't he doing what you want?"

"Because he's scared of me, honey," I said.

"Why?  You're trying to help him, " Bri stated the obvious.  

"Yes, but he doesn't trust me.  He thinks I'll hurt him."  I answered.  The minutes ticked by and my frustration increased.  "Bird, you've got another 30 seconds before I give up on you," I told him (Claire had just begun to throw water balloons at my car--duty was calling).  

It was as if he heard me.  Exhausted, he landed on the pool skimmer and I turned just enough to allow him another perspective and he flew towards it, to freedom.   

This bird, and the conversation with Brianna, stirred something within me on the soul level.  How much am I like this bird sometimes?  Stuck on one perspective, my mind not able to comprehend why things are so scary and hopeless.  What if this thing reaching out to me hurts me?  I think what I'm doing on my own is going to work....but I'm just getting so tired.  Eventually, I'll get exhausted, then resign myself to landing on what is reaching out to me.  And when I do, I find that instead of hurting me, it has set me free.  And like the bird who cannot understand the human mind, neither can I understand the mind of my God, who wants to help me, but can only do so if I allow it.

Fear and trust, trust and fear.  What's that song?  "Around and around and around and around we go.  Tell me now, tell me now, tell me now, tell me now you know"  (to you old fogies, that's Rihanna).  So here I go again, on this dance with fear.
We found fresh plasmacytomas on Kev's body late last week.  Fresh, meaning new since the transplant.  This news is not scary in and of itself.  We new that he needed the donor transplant and a whole new immune system, and we knew we shouldn't wait very long after the transplant (after all, it was 21 days after his first transplant that we found it in his brain).  What's scary for me is how aggressive and fast this moves.  Only day +29 since he had a procedure that is designed to buy people years of life.   Kev received Matt's cells on Friday, and while we wait for Matt's cells to engraft, we're also now allowing this cancer to continue mobility inside his body.  
The PET scans were repeated and the results were mixed.  ALL the plasmacytomas from before BEAM/transplant #2 were gone.  The brain is completely clear (hallelujah!), and his bones look good (no cancer activity within the bones right now).  But there are these new plasmacytomas (numerous ones) indicating that the cancer is on the move--and it moves fast.  Because of this, the docs aren't going to keep him immuo-suppressed as long as they would the typical patient.  As soon as they see engraftment, they're going to pull back on he immuno-suppression drugs to get that Graft vs. cancer effect going ASAP.  
Of course, along with this comes Graft vs. Host (GVHD) symptoms.  We don't know what these will look like yet because we're waiting for engraftment, but statistically Kev has a 33% chance of getting acute GVHD symptoms, which are most typically skin rashes, intestinal problems, and liver issues.  

In general, Kev is feeling okay right now.  He has some negative side effects from the Total Body Irradiation and chemo from last week, mostly nausea and fatigue, but he has medicines that help and he is laying low.  Bri is starting kindergarten next Wednesday and we're nervous and excited that this time is here.  The doc okayed Kev attending the kindergarten orientation tomorrow night, so we will be meeting her new teacher and seeing her classroom.  Time moves on with or without fear, I suppose.  

Pray that Kev and I will keep reaching for His help with blind faith that will place us on a path to freedom, even when we cannot see.  

God bless.  Keep the prayers coming (for my non-praying friends, keep that positivity coming!), and keep the faith.

Love, Kristin



                                                    Nurse Jackie.  We love her.

Crowded room!  Transplant doc, Dr.Williams, bottom left. 

 Getting Matt's cells.

When Kevin was diagnosed with cancer one year ago and I made the decision to start blogging, I made myself a vow that I was going to remain honest about my feelings.  Tonight, I honestly don't feel like updating this blog.  I have been putting it off because I've been waiting for a day where I feel like I won't come across as negative or scared--a "good day."  But perhaps there is someone out there reading this who will feel affirmed by my honest admission that today isn't the greatest of days and things have been hard these last two weeks.  I have been struggling with feelings of frustration towards the doctors and medical staff, feelings of resentment towards people with "normal lives," and feeling irritated when I get pitiful looks from people who learn about our situation.  I feel sharp stabs of anger when what should be happy moments (Bri learning to swim or Claire using the potty) are rained on by the black cloud over our lives.  I feel whispers of guilt that my children are not getting all of me because the majority of my brain cells are devoted to cancer.  I feel so restless sometimes, like my skin doesn't fit and I wish I could wiggle out of it.  I want to be what my family needs all the time as a wife and as a mother, but who can be all things at all times?  This 2 week break has been great, but the looming third transplant awaits and is thus providing good soil for all of my negative fruit. 

Kevin is day 25 post transplant.  He began the conditioning chemo for the allo (donor) transplant this afternoon and will have this for three days (outpatient).  The chemo is called Fludaribine and is a mild agent compared to what he's endured already.  On Friday morning he will receive Total Body Irradiation (TBI or "flash" radiation) which is a low dose, one time treatment in order to condition his immune system to prepare for the donor cells.  He will receive Matt's stem cells on Friday afternoon.  We will see his blood counts drop from the chemo, but after about two weeks we should see Matt's cell engrafting.  There will be some graft versus host symptoms (GVHD) so please pray that these will be mild. 

We will be going to the clinic every day and if there are any major adverse GVHD symptoms, Kev will be admitted to the hospital ASAP.  The transplant doc told us today that she's never done an allo where someone has avoided the hospital, so please pray for us.  This is a scary transplant because there are many unknowns.  A small percentage live with chronic illness from GVHD and 1 out of 10 people pass away from this procedure.  When you have won the reverse lotto many times, your brain is conditioned to go to these scary statistics and get cozy there. 

Jesus prayed this way, "Your (God's) kingdom come and Your will be done."  But what if God's will isn't what I want?  What if God's will is devastating to Kevin, me, or our children?  Cancer isn't God's will, right?  So why does Kev have cancer?  I do not have easy answers for these questions, and I truly don't think I am meant to.  My thoughts are flawed, fallible, and frankly, I often make poor decisions for myself.  God knows this, of course, and tells us to "BE STILL AND KNOW THAT I AM GOD."  Can a more simple statement of "trust me" ever be made?  I interpret it this way, "Kristin, stop thinking about everything and trying to figure out the outcome.  You have no idea what I'm up to because you're not me.  In fact, you should be thanking me that I don't leave decisions up to you." 

Here is the other piece of amazing news:  "Do not be anxious about anything, but in everything by prayer and petition with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."  (this is Philippians 4: 6-7).
Not only does God want us to be still and trust Him, but he also wants us to talk to Him about how we feel and how we would like things to go.  This is why it's a RELATIONSHIP with God, not a dictatorship where His will is stuffed down our throats.  Thank you for prayer, God, and for our ability to talk with you. 

And I thank you all for reading my words.  This is, by far, the most personal writing I have ever done and I trust that God does amazing things with messy honesty.

Love,
Kristin

 One thing that Kevin I have learned from cancer is how unpredictable life is.  Just when we think something seems solid enough to stand on, it changes and leaves us more befuddled than when we started.
 When Kev had his first transplant we were planning on 2 weeks in the hospital and were so disheartened when that day came and went, his levels creeping up at a snail's pace.
This time around we logically anticipated a longer stay in the hospital due to the poor state of his bone marrow going in (due to all the radiation), and the fact that BEAM is very strong stuff.  We thought a good goal would be the week of the 12th for discharge, anticipating a solid three to four weeks inpatient.
Tuesday he began the Neupogen (white count booster), and his levels responded well, doubling within a few days, and doubling again the next day.   We weren't too optimistic and were expecting it to stall out as it did last transplant.   BUT today it more than doubled, taking it to 1.03.  His bone marrow is actually in almost as good of shape as when he came in.   And we can't totally attribute all of this to the Neupogen, because his platelets went up too (which the Neupogen doesn't effect). The doctor is releasing Kev home from the hospital tomorrow,  on day +11, a very fast recovery time for this procedure.
 We, of course, are overjoyed and so, so grateful.   This is so unexpected, we are just thrilled.
 Both Kev and I can hear God telling us to stop guessing and predicting and to just keep finding Him in each strained moment.   We really don't know ANYTHING about what God  has planned or what He will do.   Perhaps if we knew how things would end up we would miss this wildly amazing and unfolding relationship with God.

I will post again in about 3 weeks when we begin transplant #3....or as Matt likes to say, "when I get to officially kick Kevin's ass."

 God bless you, everyone.

 Kristin

Kev finished the BEAM chemo last Wednesday and received his stem cells the next day.  The chemo was wretched and he is feeling quite poorly in general right now.  The chemo did the job of killing off his bone marrow and his blood counts plummeted over the weekend.  He began receiving Neupogen, a white blood cell booster, on Tuesday and today his counts went up slightly today, which is good.   He does have a low grade fever (he had one last transplant as well) which is one indicator of stem cell engraftment, but of course the docs have to treat him as if it's an infection and put him through a slew of tests and antibiotics.   It frustrates Kev and I when the doctors don't communicate well and therefore create an environment for undue worry.  A simple, "this is most likely engraftment but we need to be sure," would go a long way when you're lying in bed already feeling like you're a step away from death (okay-dramatic, but I'm not in the best mood today).  We're hopeful that this fever is, indeed, engraftment and that this won't delay anything.  I want to give a shout out to Kev because he really is an amazing patient.  He shared with me that when he leaves the hospital he wants people to say," that is a pretty awesome dude." I think we can all say, "true that."

Now, who would like to hear some good news?!  We found out yesterday that his allo transplant is going to be done on an outpatient basis!   Sounds crazy, right,  since this one is the "big one?"   Here is the science behind it:  an auto transplant is called "myelo-ablative."   This means that it wipes out the marrow, taking his counts to zero.   The allo transplant will be "non myelo-ablative"  meaning the chemo is lower dose and it only slightly lowers his levels.  So since his levels won't drop as severely and he won't be as at risk for infection, he can stay home.  The non myelo-ablation gives Matt's cells the ability to "win" against Kev's cells (which we know are bad since they let cancer run rampant).   This effect is considered graft versus host disease (GVHD) with the word disease being a slight misnomer since it's actually a good sign.  Some manageable GVHD is welcomed as it shows that Matt's cells are working (this seems a bit sci-fi to my brain).
Kev will still need to go to the clinic daily, and we have been warned that if they even sense something out of whack, he'll be admitted immediately.  The actual donor transplant will feel easier to Kev due to the lower dose chemo but he will probably begin to feel that GVHD about two weeks after. THAT can linger on for years.   Please pray that his GVHD will be mild (e.g. skin reactions) and not severe (e.g. liver malfunctions).   The fact that Matt is a perfect match is a good sign for this.

 We also leaned yesterday that it won't be 2 or 3 months after this auto transplant, but actually 2 or 3 weeks.  The docs don't want to give the cancer ANY time to consider returning.  We agree.

 We were also hopeful that the plasmacytomas would completely disappear after chemo so there would be no question of the effectiveness, but they are still visible and obvious to the touch. They have shrunk dramatically and the doc considers them to possibly be scar tissue.  We won't know the answer to this because there will not be a restage before the allo.   The allo will commence no matter what.

 We're hopeful that Kev can come home no later than the week of the 12th, and that this time passes quickly and uneventfully.   Nothing has happened this way for us yet so it's darn near impossible to stay positive without thinking in the back of your mind,  "well that's probably bull puckey." My prayers are beginning to feel like a laundry list of requests and pleas to God which, for whatever reason, He has just not been acquiescent (some of you may be thinking, "that's because there is no God", and trust me, I have my moments.....).
So here you are Romans 8:26, sharing with me that, "when we do not know how to pray as we should, the Spirit Himself intercedes for us with groanings too deep for words."   This amazes me because God KNOWS we'll struggle with this through a trial and He loves us so much that He's provided us with a way even when there is no humanly way.  Calling for God and asking the Holy Spirit to intercede for me has been amazingly powerful, reiterating my knowledge of the Truth.

Sometimes I panic because there is not enough time to write thank-you notes!  We are so thankful for all of you.  You are proof positive that blessings flow from God through the people He created.

May God bless you,
 Kristin

**  Some caveats:
I have no idea if I'm spelling myelo-ablative correctly.
I may be slightly off in explaining some things about GVHD... I'm a mere lay person.

 

The plan we have been anxiously awaiting has finally been clarified today.  The test results are all in and the results are what we expected:  significant cancer involvement.  The interesting thing is that the tests we have previously relied upon (bone marrow biopsy, M-protein level, free lite chain levels in the urine) are actually not telling an accurate story right now.  These tests are showing that he has very little cancer involvement...which isn't true.  So, what has happened?  The cancer has changed to "non-secreting"  (this sounds better than it is).  The cancer has essentially left his bone marrow and is now almost totally manifested in the form of plasmacytomas (it was found in his bone marrow, but very little).  This means that now we need to rely on the test that does tell us the story of what's happening:  The PET scan. 

The PET scan shows multiple plasmacytomas--they are really all over.  Some we can see when we look at his skin (they look like round, raised bruises), but the scan shows that there are some tumors in the muscles and bones that we cannot see.  We expected this, and this was not a shock to us.  We already knew that this cancer was back and we already knew we needed more treatment. 

We received some great news that the neuro-axis radiation was very effective and there is no evidence of myeloma cells in the cerebro-spinal fluid or brain meninges. This is actually good news on two levels because continued brain involvement would have been a barrier to moving forward with systemic treatment. We take this good news in stride as we move forward in what will hopefully be the final phase of treatment. 

Kev will be admitted this weekend to the hospital transplant unit at Butterworth where he will undergo another auto transplant (His own stem cells.  Recall my earlier post that they harvested enough cells for 2 or 3 transplants back in March)  The best way to treat myeloma is to dose it with drug agents that it hasn't seen before, so instead of Melphalan, he will be getting BEAM chemo.  Super strong combo that actually penetrates the blood/brain barrier (should've been used the first time, you think?!  But brain involvement is so rare, and I understand this...my disgruntlement is improving).  He will get this BEAM for six days, wiping out his bone marrow and plasmacytomas to the point where his stem cells will need to "rescue" him.

I wish the treatment stopped here--but recent research and the experts feel that this won't give us a long-term remission.  His cancer is very aggressive and his first auto wasn't successful.  So what we need to do is give him an entirely new immune system.  This is where rockstar #2, Matt VanZanten, comes in. 

When his levels rebound after the auto (hopefully 2-3 months), he will be readmitted for an allo transplant (Matt's stem cells).  This transplant is slightly different than the auto in that the chemo they give to Kev beforehand isn't as intense, but the recovery takes a long time.  We will deal with graft vs. host disease (hopefully not severe) and greater possibilities of infection and set-backs.  Kev and I are being gently prepped by the docs that he will probably never be the exact same (speaking in the physical health sense) as he was "before."  After almost a year of treatment--we'll take it.  The allo will hopefully be the final phase of treatment for a long, long time.  The cancer field has even begun naming this a "curative" approach for myeloma.  Praying, praying. 

Throughout the testing--these last 2 weeks-- Kev has been going to work and functioning very well.  The radiation side-effects are still lingering on, but his arm strength is improving along with his eyesight, and his pain levels are under control.  Some days are great emotionally, some are hard.  We're learning so much about the importance of grace with each other, and continue to enjoy God's renewed blessing on our marriage. 

As I travel this faith journey, I am learning that in many ways I have fallen into the same trap that the Galatians fell in to:  that Jesus isn't enough.  That if I just had more faith, read this verse, confessed this sin, changed this behavior--that things would get better and that Kev would be healed.  But Paul tells the Galatians that we cannot be made right with God by obeying "the law (religion)" and that Jesus Christ is the only way to freedom (Gal 3:21-22).  Sometimes things are just too good to be true!  I don't need to DO anything?!  I imagine myself lying down next to a seated Christ and Him placing his hand on my head telling me, "this is it, Kristin.  This is all you have to do."  The pull of religion is strong because it allows me a sense of CONTROL.  But when I remind myself of God's LOVE I'm learning that instead of feeling panic that I don't have control, I feel this peace in understanding that the God of the universe has plans to prosper me, not harm me (Jer 29:11) because he loves me. 
I loathe not knowing how this will turn out,  it rails against my fleshly desires like nothing I've ever experienced.  Jesus felt this too:  "The spirit is willing, but the flesh is weak." (Matt 26.41).  He knows how this feels, how I feel, how Kev feels. 

God bless you all.  We don't have enough thank-yous to capture what an amazing blessing you have all been to us.  Whether it was a meal or a prayer or a vacation, or a clean house-thank you. 
If you can recall from my last post, I shared that we were leaning away from a second auto transplant. If you enjoy nerd medical info, I will share below why this reasoning changed. If not, stop reading here :-). 

Kristin



**Our original hope was that Kev could be treated with some novel chemo agents in order to get a remission prior to the allo (donor) transplant.  However, we learned that unfortunately these are considered "light" chemo and that Kev's cancer needs to be hit with a "large bat."  This would mean intense, inpatient chemo over several months.  The doc felt that we would be held up with dose delays due to Kev's levels not rebounding quickly enough and that the myeloma won't wait for his blood counts to improve.  So the consensus was to hit this "hard and to the point."  Dosing him high with chemo and rescuing him with his stem cells will get us a better removal of disease bulk than undergoing months of systemic chemo and probable dose delays.  I asked if we would still go into the allo if we don't achieve remission following the auto, and the answer is, yes, we will.  This will simply slightly lower the probability of a successful allo transplant.  Good job if you have hung in this long.**

Today marked Kev's last day of radiation.  Fifteen treatments to his neuroaxis (brain and spinal column).  The side effects of the radiation are starting to get more intense and uncomfortable.  He has a sore throat, altered taste buds, weird sensations in his ears, laryngitis, and significant fatigue (to name a few).  The weakness in his arms is improving and his double vision has improved to the point where he can drive again, which is great.  We were unprepared for the amount of physical debilitation that came since this cancer reemerged but we rode out the hard part and are seemingly on an upswing.   Brain radiation is pretty scary to think about, so it helps to see the improvement in his physical functioning. We are so grateful to have this behind us and are begrudgingly moving forward to the next phase. 

Our oncologist consulted with the specialist in Chicago and it was his opinion that we do not move forward with a second auto transplant.  He proposed that we continue with the spinal fluid chemo (through the port that was put in a few weeks ago) and begin to treat Kevin with some aggressive systemic chemotherapy.  Following the chemo, he will hopefully be in remission (remember--myeloma is easy to kill, but hard to keep there) and we can then move forward with the allo (donor) transplant.  Although this is one doctor's opinion, we still desire to seek out ALL the options and make the best decision we can based on all available information.  Like I have mentioned before--this is uncharted territory and the whole team feels the gravity of the decision.  I have been pouring over Internet forums and Facebook support groups to try and find someone who has been in our situation.  I have met one lady on Facebook whose husband had a failed auto and a subsequent allo transplant, but he suffered severe complications and is now on permanent kidney dialysis following a 6 month hospital stay.  BUT he is in remission!  My brain starts to get bogged down with all of the possible complications of the upcoming treatment regimen, sending me into a panic mode that I absolutely HAVE to get all of the information.  

This last month has been a tidal wave of emotions and changes.  We entered a mode where the most demanding problem needed to be solved first, and the others had to float in the background waiting for attention.  One of those was the matter of my employment.  It was becoming more and more difficult for me to be at work--not just physically, but emotionally as well.  I began to feel quite strongly that the Lord was guiding me to be at home with my family.  I absolutely love my job, so when I made the decision to move to "on call" it was very difficult.  Plus, we had to consider what this would do to us financially.  Someday, Kev may have to go on long-term disability and not receive his full pay.  Can we do that?  So many variables and questions.  Again, I am called to trust the Lord.  By following His will, He has promised that He will provide for us in ALL things.  It may seem scary to live this way, but there is a feeling of tremendous freedom knowing that God will take care of us, however that may look.  God, in all of His love, has already reinforced this by blessing us with several financial gifts from people, just within the last 3 weeks.  It is humbling to receive such gifts, and I can do nothing but fall on my knees before the Lord in thanks. 

Sometimes I can feel my brain running and running and running and it takes a few days to realize that I am exhausting myself unnecessarily.  I have to remind myself that I don't need to solve all the problems today, and in fact I can't solve them.  Thank God I can find rest in Jesus, an ever present help in times of trouble (Psalm 46:1).  Ever present!  Always there in my most desperate moments. 

Right now, the treatment plan looks like what I have outlined above, but nothing is set in stone and we're still seeking information.  If we start another chemo regimen, this puts the allo transplant into fall.  Please pray that Kev will be able to return to work soon and that he will have the capacity to work through the chemo treatments.  Our doctor is very supportive of Kevin returning to work, and feels it's important to his overall recovery. 

The doc has ordered a full re-stage: bone marrow biopsy, PET scan, neuroaxis MRI, and renal function test.  I will post another update as soon as we get these results or sooner if I have more information to share. 

We have received an amazing outpouring of love and support, and I continue to be amazed at how kind and selfless our support network is.  THANK YOU from the bottom of my heart. 

Each day brings new hope and each morning I wake to new blessings. The outpouring of support I received after my last update was amazing, showing me that honesty is always the best route--especially when it comes to faith. The road of faith is bumpy. It becomes so obvious why David's cries to the Lord in the Psalms are such an important part of God's word. We need to be HONEST about our feelings during a difficult time in our life. How can we expect God to give us what we need if we cannot be real with Him or with our fellow man? So, I thank all who emailed me or called me with words of love and support.

Now, down to business :-). 
Having myeloma involvement in the brain meninges and along the spinal cord can cause a plethora of strange symptoms.  Clumpings of cells in certain areas around the brain can lead to various physical issues.  For about the last week and a half, Kev has been experiencing double vision and arm/hand weakness.  He has had 6 of 13 radiation treatments to his brain and spinal column (also called "neuroaxis radiation"), and he is already seeing functional improvements in his vision.  We are very encouraged that the radiation will continue to kill off the myeloma around his brain and in his CSF and his symptoms will disappear completely.  Also, radiation continues to work for as long as 4 weeks after his last treatment.

A few days ago, Kev and I discovered some small plasmacytomas on his stomach and leg.  We knew realistically that this cancer is aggressive and won't stay in his CSF for long-- but finding the plasmacytomas was still difficult.  This doesn't change anything from a treatment standpoint however, since the docs were planning to treat this as if it was systemic anyway. 
 
I mentioned in the last update that another auto transplant was being considered prior to the allo (donor) transplant.  The more I ponder this treatment option, the more I am leaning away from it.  It didn't work at all the first time, and it requires more hospitalization.  I'm just not convinced it should be the default option.  I asked our oncologist about this today, and he said that there are 2 new chemo agents that have been released very recently, specifically for myeloma.  Kev's cancer has never seen these drugs, so they may be very effective in removing the disease "bulk" prior to the allo (which is the goal--get the disease as low as possible before a transplant).  Plus, it would be OP therapy and he could return to work (assuming the radiation works on his arm and vision symptoms) in the interim before the allo transplant.  The doc plans to confer with our specialist in Chicago and hopefully we'll have a decision by the time the radiation is complete (the decision being the new chemo agents versus another auto transplant).  Or--maybe the specialist will have another idea that no one here has thought of yet.  Who knows?

Kev and I have both been off work these last two weeks and I have to say, the trauma we've experienced of late has brought us closer than we've ever been in our marriage.  A blessing such as this strengthens my trust in God and demonstrates to me that God has not forsaken us.  He loves us and I can feel the Holy Spirit quietly nudging me to trust Him.  Not just in my head--but fully in my heart.  I talk a lot about trusting the Lord, but I cannot reiterate enough how important it is to a follower of Christ.  The bad days are bad, but God never promises anything to the contrary.  What He does promise is "no eye has seen, what no ear has heard, and no human mind has conceived the things God has prepared for those who love Him (1 Cor 2:9), and may I take the liberty to add "and trust Him." 

And this, my friends, is good news. 

God bless you all.

Kristin

Following our great news this week that Matt VanZanten was a match for Kev's upcoming allogeneic (allo) transplant, we entered into a very challenging time with pain management.  Since these cancer cells are along his spinal cord, they are causing him very bad nerve pain in his back and leg.  We have been in and out of the hospital as a result, working to get a pain regimen that will work until the treatment itself will hopefully solve the problem.  The pain seems to get better every day, so we're on the right track at this point.

Kev began the first of 13 radiation treatments to his brain and spine, and we're hopeful that this will be a very effective treatment against the myeloma.  As his doctor said, "the myeloma has seen chemotherapy lots of times, but it's only seen radiation once-- and it will be blindsided."  They are giving him "boosts" of radiation at spots where they can see further disease involvement, and putting a "block" on where they radiated last October (bones have a certain level of radiation tolerance that cannot be surpassed).  Where chemo cannot go (inside his brain), the radiation can go.  There will inevitably be negative side effects since they're radiating such a large area, so please pray for Kev to be spared here. 

The timing of the allo transplant is still up in the air, since it's the most beneficial to enter into it with the least level of cancer possible.  And since we do not know what his status will be after the radiation and spinal fluid chemo, it's difficult to predict the timing of the transplant.  We do know that we're entering into a level of treatment that has no "best practice."  Different docs do things different ways and the road isn't all charted.  That being said, another option has been placed on the table during the last 24 hours.  Following the radiation and spinal chemo that Kev is doing now, it has been brought up that another auto transplant might be extra insurance (i.e. to get the disease "as gone as it can be") prior to heading into the allo transplant.  Of course, this is very aggressive-- and frankly, a hell of a lot of treatment to undergo in the future.  Each transplant in and of itself is lengthy and involved.............BUT, nevertheless we seek with all of our heart to beat this so if this is what's deemed best, we will do it. 

It's best to acknowledge the elephant in the room; that being the question, "if it doesn't work, is this how we want to spend our time?"  Unfortunately, there is no good answer to this question.  No one can predict the future.  All we can do is gather the information we have now, and move forward with equal parts rationale and faith. 

In the spirit of messy spirituality, I want to share that my prayers have been tainted by grief.  I feel my prayers for Kev's healing being pierced with my lack of belief that God will do it.  So what do I have left, Lord, than to tell you how I feel?  That this is crap.  That this feels like a deliberate and targeted blow to my soul........ 
........But has there ever been a time, Lord, that you have not kept your promises?  Daily, you meet me where I am and uplift me, even when I do not know and cannot ask for what I need.  Whether it's a word from a friend, a chance encounter with someone, or a verse from your Word, you put me back on solid ground and remind me that you love me.  I love the word picture that a pastor recently gave to Kev and I:  We are the children that eagerly sit on the porch and wait for our father to come home.  And He is the father that ALWAYS shows up. 

I am so thankful to all of you who continue to show your steadfast love and support for our family.

Love, Kristin

We received very good news today.   Kev's brother, Matt, is a match for the donor stem cell transplant!    We are so thankful and relieved.  The timing for the transplant isn't confirmed yet because we are waiting to get radiation on his brain and spine.   Fortunately, myeloma is very radiation sensitive and dies easily under a low level.   The radiation is also going to help with pain relief, so we're anxious to get this started.   Shortly after that, Kev will undergo the transplant.   There is a sense of urgency with treatment because you just don't mess around with the central nervous system.   Also, he received his port today that will deliver chemo directly to his spinal fluid.   The procedure went well and will be a more effective way to get the chemo in the right places.
I will post updates as they keep developing.

 Love, Kristin

Some moments I am struck dumb by how unbelievable this all is.  We had so much hope for the auto stem cell transplant, and we are grieving the loss of having a remission.  We knew that someday we would have to revisit treatment, but we thought we were buying some years with the transplant.  Years to watch our children grow.  I cannot tell you how hard it is to put this behind us and move forward with renewed energy.  It is good to lament this--very healthy and necessary--however we cannot live in the lamenting stage because the time has come for us to move forward into further treatment.  

The dumbstruck feeling lingers because of how incredibly rare having leptomeningeal (technical word for myeloma in the brain and spinal cord) involvement is.  Our transplant doc has been doing this for many years, and has only seen 3 people with this type of condition.  I can't help but feel like this is a witch hunt for Kev's life.  I just don't understand.  I shake my head over and over, because I just don't understand how this can be happening. 

These last 2 weeks have been a whirlwind, but especially this last weekend.  Kev received a full cranial and spinal MRI (took almost 3 hours--that was fun for him).  We received good news that there was no spinal compression and immediate surgery was not necessary.  We got his pain under control and hopefully, just like at initial diagnosis, his pain will subside with treatment.  Unfortunately, the spinal chemo is giving him neuropathy this time around--an unfortunate and painful side effect that he managed to dodge during RVD chemo. 

Seriously, the most challenging thing about this weekend was getting all of the doctors on the same page.  We had to be very on top of each new development in order to give relevant information to different doctors.  We have the transplant doc, the oncologist, the radiation oncologist, and the neurologist, all with opinions about timing and sequence.  I wish we could just all sit down at a table and hammer this out.  Instead it's phone calls from doc to doc--how frustrating.

Here is the current treatment plan, although this is subject to change :-)
1.  Continue with treatment (methodextrate) directly to cerebrospinal fluid via a small reservoir that will be placed. 
2.  Radiation (amount TBD--transplant doc and oncologist have to hash this one out). 
3.  Donor stem cell transplant.  Kev's brothers have both been tested to see if they're a match--we will find out in about 2 weeks whether or not we can use one of them.  Please pray for this!

We are giving this all we have and taking an aggressive treatment approach--pretty much the only way to go at this point.  Donor transplants for myeloma have come a long way in the last 5 years, and some docs are even calling this a "curative" approach.  A word that is beautiful. 

Carry me now, Lord--pull me from the dark pit and put me on your solid ground.  Let me rest my knees next to your feet and feel your outpouring compassion.  Fear is threatening to strangle me, remind me of your promises.  There are moments I doubt your presence and existence, help my unbelief.  Make your presence known during the darkest moments--make it known to Kev. 

Thank you all for your love and support, I'm not sure I could ever express how much it means to our family.

Kristin

Pic taken on 6/2/13