Too much information

I feel like I'm living in a bubble, far away from home, friends and family. I planned on using my recovery time here to do some painting, drawing and maybe practice my guitar skills. To be honest, I spend most of my days in bed resting. For the first 30 days after my transplant, I didn't even have enough energy to read. I just laid in my hospital bed, napping and listening to the pumps send IV nutrition, saline, and medicine into my body. I didn't eat solid food for at least 3 weeks, my mouth and throat were sore from the whole body radiation I'd received. Christina and Peter were my lifeline to the world. Christina made sure that I walked a mile through the hallways each day. I'd get a paper footprint to put on the door with each mile. Days seemed to go by so slowly.

To be released from the hospital I needed to show that I could eat solid foods again, swallow my pills, and show that my engraftment of my brother's stem cells was successful (this showed up in blood tests). When I left after 30 days, my blood counts were at the minimum for being sent home. I was vomiting almost every day and most foods made me nauseous. I'd lost most of my sense of taste- most food tasted like cardboard. And it was cold! I'd spent a month at a near constant temperature and now i could barely stand to go outside. But, sweet freedom! I felt like I'd been released from prison after spending so long in the same room, only able to wander the hallways of my hospital floor.

The second 30 days went a lot faster. We had our kids come up two at a time to visit for a week, which was just plain awesome. I slowly regained my taste and broadened my acceptable foods list. I'd still feel nausea, but was down to vomiting once a week or so. I wasn't able to drink water and most days would be hooked up to IV hydration for 8 to 12 hours. Fortunately, we were given a portable pump and hydration system, so I'm able to carry it around with me. My saliva was really thick, and swallowing it made me nauseous, so I carried an empty peanut butter container around with me to spit in. I felt like a high-school wrestler trying to make weight for my next meet. But we received the glorious news that no cancer was found in my spinal fluid and that my bone marrow was clear as well!

Today I am 87 days post-transplant. I've had a cold for the last two weeks. Christina and Peter both had it for about 5 days. My immune system is obviously still struggling. But I've kept out of the hospital and haven't had to have a growth factor shot (to boost my neutrophil counts) for several weeks now. I'm able to drink water again and am only on IV fluids for 4 hours a day. My taste for food has come back and even though I'm still fighting nausea, my list of friendly foods has grown.

My weight is down to about 165 lbs., which I haven't seen since high school. I look in the mirror and see that I've lost a lot of muscle mass. About 3 years ago I weighed 225 lbs. Deciding to shed some weight, I was down to 190 lbs a year later. My secret was to cut sugar out of my diet for several months, then to allow myself one treat per week. I think that was a pretty healthy weight for me. Now I feel like I've been in a concentration camp. My apologies to anyone who has actually been in a concentration camp, I know that my experience is actually nothing like it :)

I'm shaving again and growing my hair back (although it has yet to make much of an appearance on my scalp). I think I might have a pinched nerve in my back from one of my last spinal taps. When I cough or get out of bed I feel an almost electrical jolt in my hips, lower back and the backs of my legs. Not too fun. I've read several issues of Wired and MotorTrends, thanks to my brother-in-law. I've also read a book, not just a light one, but "Rough Stone Rolling" by Richard Bushman. It's a biography of Joseph Smith, the founder of Mormonism. I haven't read anything with so many footnotes since I finished my masters degree!

Instead of painting, I've been digitizing our CD music collection and organizing the files. Christina and I are on season 5 of Psych and enjoying laughing together. We've been listening to Christmas music and try to go to the mall every day to go on a walk together. The days are going by much faster and we're so looking forward to being with our children for Christmas. If all goes well, we'll be heading home on the 24th! I'm excited to see all of our friends in the Tri-Cities again!

We're looking at a new oncologist in Yakima for my follow-up care. We've had difficulties communicating with my doc in Kennewick, but their aren't many lymphoma specialists around. Dr. Boyd in Yakima has worked with the SCCA for follow up care before, and he's a lymphoma specialist. I'll need to meet with him at least once a week for the first month. I'll have two more spinal taps to look forward to (they're giving me intrathecal chemo as a precaution against the cancer cells coming back). I'm hoping that I'll be drinking enough fluids that I'll no longer need IV hydration. Before we leave Seattle, the doctors will remove the catheter to my jugular vein that we're using for the hydration.

We'll be watching for signs of graft vs. host disease over the next year. It can manifest itself in many ways, mostly through skin rashes or in the gut. The nausea that I'm still experiencing is a sign of graft vs. host in the gut and I've been taking steroids to try to help with it. I'm really hoping that it's a temporary manifestation and that I'll recover from it. I think I'd rather have a skin rash.

Sometimes I feel like I've had the last year of my life taken away from me. I certainly would never have chosen to go through this trial, but whenever I start to feel down about it, I have the thought run through my head that there are many people who are much worse off than I am. I've met several people here who are no longer on this earth, or who have little hope of being healed. I know several people at home with incurable diseases or who have lost loved ones through car accidents.

This one bad experience has also contained many good experiences. I have been truly blessed with good friends and neighbors. I've also felt the love of my Heavenly Father surround me and comfort me, stronger than any previous experience I'd had in my life. And in just a little over a week we'll be home!

Feeling better all the time

Day 75 post transplant. My eyebrows are growing back. I'm shaving again. Not much signs of hair, but I'm hoping that it will forgive me for all of the indignities I've forced upon it and make an appearance. Water is losing its bad taste and I'm able to drink more. My taste buds are coming back, along with my appetite and I don't feel as picky as a 3 year old when it comes to dinner.

My blood counts, white blood cells, platelets, and neutrophils are starting to stabilize. It's been almost two weeks since I've needed a shot to stimulate my neutrophils and about a week since I've had a blood transfusion.

I had another spinal tap yesterday (I think that makes around 15, but I've lost track) in which I received a precautionary dose of chemotherapy. It was pretty rough, it took three different people to finally get the needle into my spinal fluid. I had a headache afterward and threw up on the way home. But other than that, it went great because we got the results back AND ITS STILL CANCER FREE! Which is what we expected at this point, but I do not tire of hearing good news! Today I've been resting and feeling better, I don't think I'll have a long term headache from the spinal tap, just a sore back for a few days. We've got three more planned, every two weeks.

I can taste food again! I know I mentioned it already, but it came just in time for Thanksgiving, which we spent with a wonderful family. We met the Walkers through church and they invited us for dinner and then out to see Disney's Frozen with them. It was a wonderful day. I very much appreciate their generosity in sharing their time, family and delicious food with us.

We had our boys Michael (15) and Derek (8) with us for the week and they had a great time as well. Derek's birthday fell on Thanksgiving this year and he was excited to spend it with us. We also got to visit the Museum of Flight last Tuesday, which was AWESOME! I can't believe how many neat airplanes they had stuffed into that place. Some favorites were the SR-71 blackbird, all of the WW1 and WW2 planes, and the real Air Force 1 that president Kennedy used and we were able to walk through.

I have a good friend who came to pick up our boys and bring them home for us.We talked for a bit about people who inspire us. I've thought a lot about this recently and what inspires me is people who do service for others without being asked. Frankly I feel like this has been one of my weaknesses. I'm usually happy to help others out, but I usually have to be asked first. I don't volunteer a lot. But I've seen a lot of others do this and I appreciate your example!

If all continues to go well, we'll be home in about three weeks, just in time for Christmas. We've really enjoyed having kids up to visit the last few weeks, I'm going to miss being with them for the next little while. But it will be a short time and then we'll be together again! And for the most wonderful time of the year!

44 days post-transplant

"And we're dancing like we're cancer survivors, like we're grateful just to be alive" - Andrew Bird, Near Death Experience

The test that I've been dreading has been a lumbar puncture (spinal tap) to determine whether or not my cerebral spinal fluid is cancer free.  We got the results back this morning and it is!  This truly is a miracle for me.  I'm not completely out of the woods, but the other test results we've gotten have been encouraging as well and it just feels like things are going our way.

We've had several spiritual experiences that had made Christina and I feel that I'll get through this, but it was hard hearing from the doctors that my chances were very low (because of the cancer in the spinal fluid) and maintaining that confidence.  I should say it was hard for me, because Christina never wavered.  She has certainly been a rock for me to hold to during this experience.

I'm now 44 days post-transplant.  I'll need to stay in Seattle to be monitored until about day 100.  We should be home for Christmas if all goes well.  We've been able to have some of our kids come up to visit; Emma and Norah stayed with us last week and we have Eliza and Marian with us for this next week.  It's so good to spend time with them again!

We've had several great reports from the benefit auction that was held for our family last night.  Now I'll never be able to get frustrated with a client from work, because I won't know if he or she gave $25 or $50 dollars to the gofundme account that was generously set up for us by my coworkers.  I can't ever get upset with anyone from church because they may have spent a few hours setting up for the yard sale benefit back  in June.  I'm so overwhelmed with the generosity of those whom I know well and many whom I don't know well that I'm just going to have to think the best of everybody whom I meet for the rest of my life.

There are so many people to thank and yet I feel that any thanks I can give is woefully inadequate. I love you all and what you do for us means everything to me.

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!

Second thoughts

I'm beginning to have second thoughts about having lymphoma.  Now that I'm a few months into it, the magic is starting to wear off.  Sure, the extra attention is nice, and people are truly amazing.  But I'd have to say I'm ready to return to the ranks of the cancer free.

The last two weeks have been worrisome.  We've been waiting to find out when we'll be traveling up to the Seattle Cancer Care Alliance for my stem cell treatments.  Christina called and talked to Dr. Maloney, the specialist who will be performing the transplant.  He looked at the PET scan I'd had the week before and told Christina we're behind schedule in putting the cancer into remission and that we should be more aggressive with it.

We've been worried about our local doctor ever since we've begun treatment.  He is from India, graduated from medical school before I was born, and is not a very talkative person.  On the other hand, Dr. Patel is very grandfatherly, has a very positive attitude, and takes time to answer all of our questions.  We just aren't always sure we're asking the right ones.  He also seems to be forgetful at times.

So, we called Columbia Basin Oncology and Hematology and asked if we could see another doctor.  We were ready to switch.  We saw Doctor Gamboa on Wednesday.  He is a year younger than me and communicates very well.  He seemed very open.  He also told us that Dr. Patel is the lymphoma expert in their clinic and the one that he would defer to in treating this disease.  He also let us know that he agrees with Dr. Patel's approach in treating my case.  He pointed out that the symptoms are improving.  They can't manually feel my lymph nodes or my spleen anymore, so we know that they are getting back to their normal size.  My other symptoms have improved.  Also, we didn't start out with a PET scan, so we don't really have an original to compare the last one against.  Dr. Gamboa recommended that we continue with my current regimen, especially since I only have one more round to go.  Then we'll take another PET scan and evaluate. If the cancer is in remission, I'll be able to go up to Seattle and start the stem cell transplants.  If not, they will put me on a more aggressive chemotherapy regimen.

Dr. Patel also spoke with Dr. Maloney and it sounds like they are on the same page.  So Christina and I are feeling more confident again.  And I just made it through my fifth round of chemo with flying colors.  The lumbar puncture wasn't too bad, although it did take a few prods of the needle through my spinal cord to find my spinal fluid.  And I had to go in for a blood transfusion on Friday to boost my red blood cell counts.  But other than that, not too bad.  I had a few nice naps.

Fighting cancer

I've been thinking lately about what it means to fight cancer.  I don't feel like what I'm doing is really fighting. I mean, mostly what I'm doing is taking my medicine and keeping a positive attitude.

Christina told me that she was reading a blog about a man who preferred to use the term "living with cancer" because he felt it was more accurate.  I don't know if I like that either, although I do like the emphasis on LIVING.  But the ultimate goal is to get rid of it.  Of course, that's my goal- maybe he has a type you have to live with.

Any ideas?  I do have some goals that I try to follow in my battle with cancer.  For example:

1. I am asking my Father in Heaven for his help and guidance.  I am asking for a miracle in my life.
2. I am trying to live closer to the spirit.  I have felt the spirit very strongly throughout this experience and I want to keep that feeling by being obedient to promptings I receive.
3. I am trying to eat healthy foods and drink lots of water.
4. I'd like to be more physically active, but most days I realize that the best thing I can probably do for myself is to rest
5. I am trying to balance work and home life, realizing that home life is much more important.
6. I want to spend as much time as possible with my wife and children.  Friends too!

That's a pretty good list for now.

Wise counsel

Yesterday our stake president, Ross Montierth called and asked if he could come and visit.  I've never had a stake president in my home before- it was a special experience.  He spent about 45 minutes talking with Christina and I.  I know that represents a significant amount of time for him in his busy schedule.  I'd like to share a few highlights of what we talked about.

First, he took time to let us know he cares about us, and that the members of the church do as well.  Our ward is going to be fasting for my family on the next fast Sunday and he let us know that several other wards in the stake would be as well.  It is so humbling to be on the receiving end of so many thoughts and prayers.

He shared with us some of the health challenges that his own family has had to deal with and let us know that it is part of the Lord's plan for us to grow.  I've really felt a witness of this.  I know that Heavenly Father has an idea of who he wants me to be and I really feel that this trial is a part of helping me to become that man.

He reminded us that the Lord can heal us, but often delays that healing for our own benefit.  Also, it is more important to Him that we be spiritually made whole than that we be physically made whole.

He talked about blessings and counseled me to ask for blessings as often as I had the desire.  Usually an anointing is only necessary on the first occasion, but priesthood blessings are always available.  He reminded me that those blessings are based on my faith and told me that it was acceptable for me to ask the administering Elder for specific blessings.

We spoke about patriarchal blessings and the fact that we can learn different things from them at different points in our lives.

Also that this experience would draw us nearer together as a couple and as a family.  He gave me a hug as he left and I could feel that he genuinely cares for each of us as members of his stake.  It was a special visit.  I am so grateful for the church, for both my brothers and sisters as well as our leaders.  I do not aspire to be a leader in the church, but I do hope that I can follow their example.  I can see that they are guided by the spirit and I want that more in my life.

For my centurions

When a roman centurion asked Jesus to heal his servant, the Savior responded that he would come to his home immediately.  The centurion replied that Jesus need not come to his house for he was unworthy.  But he believed that the Savior had the power to heal his servant from where he stood.

I used this story for family scripture study tonight.  I feel a bit like the servant in the story.  I have many centurions asking with faith that I might be healed, and I know that the Savior has the power to answer those prayers.  I thanked our children for their faith and prayers in my behalf.

I love the gospel.  I love that there are new things to learn and apply to ourselves now matter what our circumstances or trials we go through.  I am so grateful for the comfort of the spirit which I feel.

I really think I'm going to make it.  I feel that is what the Lord wants from me.  But if not, I know that I won't be alone.  That my family won't be alone.  That the Savior will be there for us and that things will be okay.  I'd heard people say similar things as they went through trials and I always wondered if it were true or if people just have a tendency to grab harder onto their faith when faced with tragedy.

For me, it has absolutely been true.  Any cynicism, any lingering doubts have just been melted away by a stronger force.  A feeling that the Lord knows who I am and that he loves me and that things will be okay in the end.  I feel that His love is surrounding my family and keeping us safe.  I want to do whatever it takes to keep this feeling with us.  I know that there is a chance that it will fade as we get into a new routine of dealing with cancer and returning in some ways to normal.  But I want to keep it bright!

It's a wonderful life

I haven't seen that movie for a long time, but I remember that George was feeling so low he was about to take his life when a guardian angel intervened to show him how much impact he had on the lives of those around him.

This experience has been a little bit like that for me.  Not that I was feeling low before, but I've had so many well-wishes and people rallying around me.  I really appreciate it.  I've felt a lot of love and the influence of many prayers on my behalf.  It's very humbling.  I'm not used to being the center of attention.

I wish everyone could have this experience (minus the cancer, of course).

Though through the valley

It's been a week and one day since I found out I have lymphoma.  I've felt so many blessings during that week.  I've felt that the veil is a little bit thinner for me.  Maybe that's part of what it means to walk through the valley of death.  I really have felt the presence of the Lord through this.

To begin with, from the moment I heard the words, "Nathan, you have cancer," I've felt almost like there is a protective cocoon around me, helping me to feel secure, to deal with the potential awfulness of the diagnosis.  Christina has commented on this as well.  We've really felt the spirit reassuring us that everything will be right in the end.

I'm thankful that we didn't find out everything all at once.  We've been going through tests and narrowing down the diagnosis and treatment options over the last week.  This has made it easier to deal with the problem mentally.

I'm thankful for our bishopric, Brian Kreutz and Brian Howard visited us the first night in the hospital.  They gave me a blessing.  They also gave Christina a blessing.  It was a great comfort.  We were told that we would be given the resources to make good decisions that would lead to a good outcome for me.

Christina is amazing.  I have felt many times during our marriage the witness of the spirit that we were meant for each other, but it has been particularly strong during this week.  I know that this is very hard on her, but she has really rallied the family together.  She is my coach and team captain.  She is my researcher and counselor.  More than that she is my eternal friend and companion.  I cannot express the depth of my appreciation for her.

And so it begins

I'm not sure where to start.  I'm in the hospital.  They've told me I have lymphoma, a type of CANCER.  I'd like to sort my thoughts out.  I'll do it QA style.

When did it start?

Looking back, I've been feeling sick off and on for about 2 years now.  In February 2011 I finally decided that it was time to lose some of the weight I'd picked up over the years.  I cut way back on sugars and figured I'd see what happened.  I started to lose about 2 lbs a week, and decided I'd keep going until I got under 200 lbs. (I started at 224 lbs).  I reached my goal by August and kept going.  By February 2012, I'd dropped to about 185 lbs. and have been maintaining ever since.

So don't diet- eating healthy can cause CANCER!

Anyway, around April 2011 I started having some weird stomach problems.  I'd feel pretty normal throughout the day and then start feeling strong stomach cramps.  They would last for a few hours and then go away.  I had one episode in May 2011 that I went to the Emergency Room.  Aside from the intense stomach pain, I started to lose feeling in my hands, then arms and legs.  I found out at the hospital that I had been hyperventilating.  They gave me some pain killers, sedative, anti-nausea drugs (which I promptly vomited) and did an MRI and some bloodwork.  Looking back at the bloodwork now, the doctors have told me that some of my vitals were borderline normal.  So some red flags were raised, but not enough that I knew to do anything.  They could't tell me what was wrong, so I went home.

This is way too detailed.  If you're bored, I'll try to use good headings to you can see where it gets interesting.  If it does.

Later that year, around August, the stomach cramping episodes turned into violent vomiting episodes.  I would throw up every 10 minutes for hours.  This would occur every 2-3 weeks, then I'd feel normal again.

I went to see a gastroenterologist.  He did an endoscopy on me in December 2011 and didn't find anything out of the ordinary.  By January 2012 I stopped having the episodes (no vomiting, no stomach cramps), so I didn't follow up with any more doctor's appointments.  I'd occasionally feel some light nausea, but otherwise felt normal.  I'd lost a lot of weight, I was going on hikes with the Boy Scouts and generally feeling pretty good.

Looking back, Christina and I both wonder if all of that stress on my immune system either left me open to cancer or was a sign that cancer was coming.

In October 2012 I started waking up most mornings with sore hands and leg muscles.  It felt like I'd clenched my hands all night.  I thought maybe I was developing early arthritis and so I went to Costco and stocked up on Joint Juice, fish oil, and other vitamins.  I started feeling nausea pretty frequently, so I thought maybe I had developed a gluten intolerance.  I tried going gluten-free but it didn't seem to correlate to the nausea very well.

By December I was waking up every 2 hours to go to the bathroom, I was always thirsty, and I started to wonder if I had diabetes.  I finally decided that my flailing around trying to find the right nutritional answers to my problems wasn't working so well, so I went back to my primary physician to see what they could tell me.

We ruled out diabetes.  My bloodwork showed that my kidneys were really struggling, I was anemic, I had a low thyroid output and my liver was weakening.  Still no diagnosis, but the bloodwork ruled out HIV/AIDS and hepatitis A and B.  Whew!

Then things got worse.  I was breaking out into sweats, feeling too nauseous to eat, not drinking enough water (though I tried) and spending all day in bed or on the couch answering Christina's questions in the shortest way possible and feeling miserable.

More tests on Monday February 4th, including a chest x-ray and a CT scan.  I also mentioned to my physician about the lumps I'd been feeling on the back of my head.

Dr. Vaughn called our cell phone while we were driving home.  He asked me if I was driving.  I said no, Christina was.  He told me he had bad news, that I had cancer and it was in all of my lymph nodes.  Don't go home, turn around and go to the ER.

The end of the beginning.