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.)