About the world we live in, and life in general

Gee, but it’s great to be back home 
Home is where I want to be
I’ve been on the road so long, my friend 
And if you came along I know you couldn’t disagree

A little Simon & Garfunkel to start out my post. It really is great to be back home! I just realized that I haven't written since early December. A lot has happened since then. The fourth of this month was the one year anniversary of my lymphoma diagnosis. We didn't do anything to celebrate.

We had a wonderful Christmas! We had carolers come to our home the night we returned. Our front yard was full of friends and family. It was a great way to be welcomed home. We spent the week just loving each other and being grateful for our blessings. Our time went by quickly and Christina, Norah, Peter and I went back up to Seattle for my final appointments with the staff there. We came home for good on Dec. 31.

As eager as we were to come home, it was almost hard to leave Seattle. We felt safe there with the nurses and doctors at the SCCA. We had been through some hard times and some good times there and developed a great relationship with them. In September after we had received the bad news that I still had cancer cells in my spinal fluid and that the transplant had little chance of clearing them out, our long-term nurse Cindy stayed behind in our room to give us a hug and tell us that whether my chances were 1% or 5% I still had a chance and that I could survive this. That made a difference to us. I still get choked up when I think about that day.

Christina and I were able to spend a lot of time together. More time alone than we've had since we were engaged to be married. Well, we did have Peter, but after having 8 kids, we felt as if we were alone. I think that some couples go through adversity and it tears them apart. I'm grateful to report that for us, going through this experience pulled us together. When we first discovered that I'd be going to Seattle for a transplant, I insisted that Christina stay at home with our children. She insisted that her place was with me and that the kids would be alright at home with her Mom and my Mom there to care for them. I know that it has required a lot of sacrifice from our mothers and that it has sometimes been hard for our kids, but I also know that staying together as a couple was the right decision for us. I don't think I could have gone through this emotionally, physically, or spiritually without my sweetheart at my side. I treasure the relationship we've built.

Now we're back in the real world. One of the things I like best is being around healthy people. It's hard to see people suffering through cancer treatments, even though so many of them have great attitudes and real insight to share. One lady and her husband were going home after a failed transplant. She knew that her husband only had weeks left in his life. When she found out that we were about to leave the UW medical center and would need an apartment, she offered to give us hers, where the rent was already paid for the rest of the month. I was surprised that she would make such a generous offer to us when we were almost strangers to her and she was surely distracted by her own grief. People can be so good to each other, even under the poorest of circumstances. Sadly, her husband passed away in early December.

We made friends with a couple from Spokane, Leland and Rebekah. Lee had had a transplant a year before, but his leukemia had returned about 9 months later. After going through treatments from a new experimental study, when we met his cancer appeared to be in remission. We had dinner with them the last week of December and Lee looked healthier than I was. We found out in early January that his cancer had returned. He and Bekah returned to Spokane with their little daughter. Lee passed away about a week and a half ago. Sometimes I feel like I'm experiencing some PTSD from my experiences. Cancer is horrible. I don't know why some people are able to survive it and others can't. But I'm glad that I'm still here and I plan on sticking around.

I'm seeing a new doctor, Thomas Boyd in Yakima. We wanted a lymphoma specialist who was used to working with the Seattle Cancer Care Alliance and their long-term follow-up department recommended him. He has a great office, it reminds me of a ski lodge! Here is their lobby:



I'm seeing Dr. Boyd once a week. I'm also taking a fitness class at the Tri-City Court Club that is designed especially for cancer patients. I'm starting to feel a little bit like my old self. I'm hoping to start back to work, at least part-time this spring. In the meantime, I'm sleeping a lot and spending time with Eliza and Norah while their siblings are in school.

Life is precious, good and worth giving our best to!

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!