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