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.