Die cancer die!

I've been in a holding pattern, waiting for a bone marrow transplant since early July (when we found out that there were cancer cells in my spinal fluid). After some intensive chemotherapy in July and August, those stubborn cells were still showing up, though thankfully they haven't formed any tumors. So I began ten rounds of cranial/spinal radiation in early September with the expectation that they would be wiped out and I could continue on to transplant.

After 9 of the rounds, my team did a spinal tap to get a sample of my spinal fluid and ran flow cytometry on it to check for cancer cells. The bad news is that they are still showing up. My doctor gave us the choice to continue with the transplant anyway, with a much diminished chance of curing the lymphoma, or going home and letting nature run its course.

Last week's news hit hard. We stayed up all Thursday night crying together and feeling sorry for ourselves. Friday was better. The doctors at the clinic hold a weekly meeting where they discuss the cases of various transplant patients. They unanimously agreed that if I wanted to fight, we should start the transplant right away. A low chance for success is better than none at all!

There is still hope, otherwise they wouldn't perform the transplant on me. There is a chance that the cells that they found after the radiation are dead and just hadn't been flushed out of my system yet. That makes sense to me. It just doesn't seem reasonable that they would already be resistant to radiation, when I hadn't had any before (besides the small amount of stuff we're all exposed to in the Tri-Citites, ha ha).

And I don't feel like it's my time to go. I know that we're all going to die someday, and that if the Lord wants me to go home, there's not much I can do about it. But I don't feel like that is His will for me. Christina and I both feel that somehow this is going to all work out and that I'll be able to come home
and be with my family as my kids grow up.

Both of our families held a fast for me today and our ward held a fast for our family. We were able to come home for the weekend, spend time with our children and Christina's family, and attend church at our home ward. I can't tell you how rejuvenated I feel. I am so very thankful for everyone's love and prayers. I can't tell you what it means to me, but I can tell you that they are a source of hope and strength for Christina and I right now.

I'm going in tomorrow for three days of whole body radiation. This will wipe out my bone marrow and destroy my immune system. On Wednesday, the clinic will collect stem cells from the blood of my youngest brother, Jarom. On Thursday, those cells will be circulated into my blood and will become my new immune system. I'll need to get all of my shots over again, just like a newborn. I'll be in the hospital for about 30 days, less if I do amazingly well. Then I'll spend another two months here in Seattle being monitored closely. We're hoping to be home around Christmas.

Purgatory is a really long line

Imagine waiting in a very long line.  From the beginning, you can't really see the end, but you know it's up around the corner somewhere.  Finally, you get near the end, only to be told you need to get out of line and go to a new line.  What's special about the new line is that no one knows how long it is.  

And the worst of it all is this isn't a line for Splash Mountain or Grizzly River Rapids.  It's a line for a medical procedure that will probably save your life, but will make you feel sick for at least a month and has at least a potential for death.

In the middle of July, the doctors found some cancer cells in my CSF (cerebral spinal fluid) during one of the many spinal taps (thirteen, to be precise) that I've had the opportunity to participate in.  Because my future transplanted immune system won't be interacting with my spinal fluid, it is imperative that we clear the fluid of cancer cells before the transplant.  Otherwise, I could wind up with clean lymph nodes, but a tumor growing in my brain.

On July 26 I began a new regimen of chemotherapy in an attempt to clean out my CSF.  After almost a month, progress was mostly sideways.  After some initial reluctance, we decided to try irradiation my brain and spinal column.  I was nervous about it because I'd heard that it could be pretty traumatic to my brain and (understatement here) I'd like to avoid that if possible.  

So we've been waiting for awhile for good news and it finally came to us with some good test results last thursday.  My CSF was markedly clearer.  In fact, they detected no cancer cells in the initial report and only about 1% (vs a previous high of about 20%) in the more sophisticated flow cytometry report.

I'm four treatments into my ten-treatment radiation regimen and my doctors are scheduling me back in for the stem cell transplants.  My brother Jarom is scheduled to come up next week and I'll receive another Spinal tap on the 10th.  My doctors seem confident that it will come back clear and that we'll be able to proceed with the transplant the following week, around September 18.  

I'll spend thirty days in the hospital, then I'll be released to our temporary housing facility here in Seattle where they'll continue to monitor me for another 2 months.  If all goes really well, there's a chance I could be home for Christmas.

I know there could be some rough road ahead, but at least I'm moving forward again!

chemo chamelion

Some bad news today. We got the results from last week's spinal tap and they found some cancer cells in my fluid. Totally unexpected, because this was my eight test and they hadn't found any since the first. And they've been giving me chemo into spine to prevent this. How will this affect my treatment plan?

It is already part of the plan to give me radiation over several days to both wipe out any remaining lymphoma cells and to destroy my immune system so that my donor cells will be accepting of their new home. Usually they would block off the radiation going to my head, but now would like to allow some of that radiation to go through. Unfortunately, this could cause some brain damage, which is something I don't need :)

How do I even go about making that decision? The amount of cancer they found is small, but if left unchecked, there is a real possibility of it spreading to places where it is really hard to remove (like my brain). I'll be going through an MRI next week to make sure I don't have any tumors starting up in my skull. Like many big decisions in my life, I'm going to put it off until it has to be made ;)

Before doing the radiation, we're going to try another chemotherapy regime. The Hyper-CVAD is a stronger chemo administered over three days in the hospital, then an additional two days as an outpatient. If it is effective, I may be able to avoid irradiating my brain. My transplant date will be pushed back several weeks to accommodate the extra round of chemotherapy.

Other than that, I've actually had a quite pleasant experience here in Seattle. In between the blood draws, various types of physicals and preliminary tests, Christina and I have gotten to spend lots of time together. She is my best friend and throughout this experience she has really been a rock for me to stay anchored to. She is the yin to my yang and I feel really blessed to have her for my wife.

I'm also grateful to my Heavenly Father.  He has not left me to walk this road alone. I have felt his presence in my life and he has given me many friends to walk with. Thanks for being one of them!

Home again, home again, jiggety-jig

We spent three days in Seattle, going through preliminary tests with nurses and doctors to make sure I can physically handle the transplant process. We also signed a lot of papers, it felt a little like buying a house!

The doctor on Thursday let us know that we'd be pushing the procedure start date back a week and that we could go home during that week if we'd like. They need me to recover some of my levels from the last round of chemotherapy. So we drove back on Friday to surprise our kids Saturday morning. The first thing our 3-year old Norah asked me was, "Daddy are you better now?" It brings tears to my eyes- I so look forward to the day when my answer will be "YES!"

I have mixed feelings- it would be nice to get this over with and it will be hard to say goodbye to my kids a second time. On the other hand, it doesn't feel like I'm in an assembly line where the goal is to get me through as quick as possible. I'm glad that the staff in Seattle are taking into account my health status and what dates would give my optimal chances for success. I also feel like I know a little bit more what to expect.

We had a fun time with my brother Jared.  He is a very limber guy- always jumping over banisters and the like. We got to spend a few hours at the Experience Music Project on Friday, which was really cool. I'm looking forward to living in downtown Seattle for a few months, especially those months where I'm recovering. I wouldn't want to live there long-term, but I've always thought it would be great for a short period of time. I'm glad that I'll have Christina with me and I'm hoping that this experience will bring us even closer together.

I was telling my son Michael last week that this experience feels a little bit like when I left for my mission. I felt strongly that it was something I should do, but it was still really hard to leave my family. But I felt then and I feel now that God is watching over us, that he has a plan for me, and that these experiences will be for my good. I believe that is true for everyone, but it's nice to feel a witness of it in my heart.

Adventure awaits!

Christina talked to Doctor Maloney's nurse (at the SCCA) on Friday. Although my PET scan showed that the insidious invading lymphoma is not in complete remission, they aren't sure that more chemotherapy will completely eradicate it. While that sounds slightly ominous, it does mean that we are going to begin the bone marrow/stem cell transplant treatment. So, we're off to Seattle on Wednesday. As part of the conditioning treatment, I'll get more chemotherapy plus radiation to kill off any remaining lymphoma and prepare me to receive donor cells from my brother.

Speaking of brothers, I am fortunate to have five. As well as five sisters. We found out about two weeks ago that they had finished HLA typing my siblings and it turns out that I have 4 matching siblings, not just my youngest brother Jarom. And since Jarom is only 16, my doctors would like to use my brother Jared as a donor in his stead. All of us siblings are really close and I'm so grateful to all of them for being willing to save my life- Jarom is awesome and I hope he knows I'd be proud to have some of his cells running through my veins! Jared is a great man and I'm hoping that some of his greatness comes to me through his blood :)

I am grateful to all of you for your friendship and love. Going through this has been a truly humbling experience.  I had no idea that so many people would show so much love to me and my family. I get choked up when I talk about it.  Thank you so much, it really does mean the world to me.

YOU ARE ALL MY HEROES!

Thank you to my colleagues at PNNL for being there for me and for generously organizing a fund drive to help my family. When I heard that a goal of 10,000 had been set, I thought it was wishful thinking.  I had no idea people would be so generous to me and my family.

Thank you to my church family for organizing a garage sale for our family. In my mind, I thought a yard sale would turn up maybe 2 or 3 thousand dollars for us. I'm still trying to understand how 11,000 were raised. I'm grateful that finances are not the first thing on my mind right now.

Thank you to everyone who has written a note, stopped by to visit, do some yard-work, prepared meals for our daunting crew or even liked a Facebook post. All of the encouragement really adds up!  I want you to know that I truly care about you as well!

Thank you for your prayers, they are almost tangible in my life right now. I know that Heavenly Father is watching over my family. I know that he loves us all and wants us to be happy. I feel like most of my life I've stumbled through a dark forest, seeing a little bit of His light through the trees to guide my way. Right now I feel like I've reached a little clearing where the light is stronger. I'm grateful for that light, it makes this challenge bearable. Sometimes it's hard to have faith because there are so many opportunities for doubt. I've felt that way before, but I've managed to stay on the path and now I'm now enjoying a beautiful vista. In the future my path may not always be as well lit, but I'm grateful for this experience in the sun, it has renewed me.

Farewell for now.  I'll keep posting while in Seattle and let you know of the gruesome horrors they put me through in the name of healing me. I look forward to coming back to you all after a successful procedure.

Dates and choices

On June 10 I will be going to Kadlec for another PET scan to determine if the insidious cancerous t-cells have been successfully eradicated or if I need to go through another round of chemotherapy.  I'll find out the results on June 12.

The good news is that Dr. Patel feels confident that we'll have the cancer on the run and be able to go up to Seattle.  In fact, we have scheduled with the Seattle Cancer Care Alliance to begin treatment on Wednesday, June 26.

Last week was my last cycle of my six-cycle chemo regimen.  The nurses all came and sang, "hit the road, Jack" to me.  It was very sweet of them- they have all been so great!  It really hit me that I could be done with this stage of the cancer battle.  I've been so focused on the stem-cell procedure that the end of the chemotherapy has snuck by me.

I've been very blessed during these treatments.  I know that they can be very hard on people and I feel like I've gotten by relatively lightly.

I'm leaving work this week.  It's hard- I like my job a lot and really love the people I work with.  I know that my coworkers are facing some busy months ahead.  But it's getting harder and harder to get forty hours in each week.  I also feel like I should spend a few weeks with my kids before leaving them for several months.

I've been thinking about choices lately.  From an early age I was taught that what we get out of life is a result of the choices that we make.  I knew that who I would marry would depend on who I dated and what kind of man I became.  I knew that my future job would depend on how I did in school or applied myself at my work.

Now I'm going through an illness where many choices have been taken away from me.  And yet I'm grateful for the choices that I still have open to me.  It's a narrower set of choices, but I know that they still matter.

I like Pi

My thoughts on the Life of Pi (spoiler alert!).  Not a review, but my thoughts on the themes of the movie.  Feel free to chime in!

It is a beautiful movie- the cinematography is excellent, the visuals are engaging.  It has an interesting story and explores themes that matter.  This is the type of movie I really enjoy, one that leaves me thinking for a few days after seeing it.

The movie presents you with a series of unlikely events that Pi experiences as he survives a shipwreck in the middle of the Pacific Ocean and then months drifting at sea with a tiger for company.  Afterwards, Pi presents an alternative narrative to the events of the film.  One that is much less magical.  The second narrative is easier to believe, but not very satisfying,  The audience is then presented with the choice of which story to believe.

My family feels that the film ends with the first (more fantastical version) of the story as the "truth", but I didn't feel that way.  I think that the characters in the film all chose to believe the first version, leaving the audience with the impression that it must have been the "true" version of the events. They chose to believe the first version because it was more magical, heroic, and satisfying.

And here is where the ideas of the movie have stuck with me.  We are introduced to Pi's story as a story that will "make you believe in God."  This could mean that watching Pi go through near-magical events that lead not only to his survival, but also to his strengthened faith in the divine, will strengthen our faith as well.  But I see a different message in the film.  Pi went through a horrific event, watching his family perish at sea and then surviving alone (or perhaps with a tiger) for months afterward.  But then he was able to assemble a version of the events that was beautiful and gave meaning to life.

Just as we have to endure traumatic events but are free to choose to believe in a version of the universe in which there is a loving father watching over us, where our lives have meaning beyond the day-to-day activities, and where our deaths are not permanent, but only a chapter in the book of our life.

A few months ago, this message would have resonated with me.  And I still feel that it is a positive message.  But it's also a bit cynical.  It is a message that faith is really not much more than a choice we make and that it doesn't really matter if belief in the divine is a belief in something "true."  If it gives richness and meaning to our lives, then it is positive whether it's "true" or not.

I felt this way before I had lymphoma.  I believe that in many ways, God gives us enough light to see our next step in the darkness, but not much more than that.  Maybe life has to be that way.  Without doubt, how can we have faith?  But sometimes our doubts can feel stronger than our faith.  And it can feel like faith in God is not much different than faith in Santa Claus.  That faith is a story we tell ourselves to make life bearable when it is hard to bear.

But that hasn't been my experience the last few months.  When Christina and I found out that I had cancer, we both immediately felt a blanket of comfort surrounding us.  It wasn't something I had to look for.  It wasn't something that I had to talk myself into because I was terrified of the trial which had suddenly come into our lives.  I feel that this feeling is completely outside of me and that it is my Heavenly Father telling me that things will be all right.  I think that means that I'll live through this trial, but even if I don't, I know that He is watching out for my family.  My point is that I've been given I've been given more light than I'm accustomed to and it wasn't because I made an arbitrary choice to believe.

I've seen this happen to other people as well.  I've seen people bear testimony after a family member had died that they felt at peace and felt comfort from the Holy Spirit that their loved one was still alive (spiritually, of course).  And I wondered if they really felt that way, or if they were choosing to believe that because the alternative was just too awful to bear.  And now I know- that peace is real and we really can have the knowledge that our families can be together again.

And there will be pie!