Happy Birthday, Tyler

My darling husband was born on Halloween, 45 years ago.  It was impossible not to spend time thinking about him today and yet I am not sure what to say.  I miss him.  He was such a great husband to me and friend to all that knew him.  I miss having him at home at the end of the day.  I miss him helping me keep my busy-ness in check.  I miss being able to cook dinner for him.  Fantasy football isn't the same without his addiction to statistics and his constant need to share the latest stat with me...  That barely scratches the surface, but I'm sad that we have to go on without him in our midst.

One of the things that bothers me is just how young he was when he died.  I guess they tell the truth when they say that cancer is equal opportunity.  I truly hope that we see a change in that during my lifetime.

Two Months today

I got a little teary-eyed this morning as I realized that it was the 2 month anniversary of Tyler's death.  He is missed by many people, I know.  I am doing okay.  I have been reading some books about grief recovery (thanks to those who gave such a thoughtful gift) and one of them has something that really resonated in my heart and I wanted to share it with you.

The book said that unresolved grief is often caused by a feeling that something should have been different, better, or more.  As I shared with a friend, the cancer diagnosis was in this one way a blessing for Tyler and me. We knew that our original dreams of growing old together would be challenged by this disease.  As he failed treatment after treatment, that became more of a reality for us each time.  Because we knew this fact, I was able to make choices to be with Tyler and really LIVE the life we could while I still had him.

While I do have a few regrets about things over the past 4 years (mostly that he had to fight cancer at all), I was able to be with him whenever he needed me.  I can never repay my coworkers and bosses for that time, as it is infinitely precious to me.  I spent most of the last month with Tyler and am so very thankful for that.  I flew with him to Houston and stayed until he got out of the hospital again.  I was with him as his health first started to fail seriously and during his last stay at UW.  I was holding him in my arms as he died and hope that helped to ease his transition.  It was (is) quite emotional for me to think about that final moment, but it was a sacred moment for me.

My purpose for sharing this is just to remind you to think about how your choices would be different if you learned that your loved one had only a limited amount of time left to be with you.  What changes would you make?  I certainly didn't quit my job and don't expect that any of you can afford to do that either.  But I surprised Tyler with tickets to a comedy show twice, just because I thought it would bring a smile to his face.  What can you do to make sure that you are not left feeling that you should have done something "different, better, or more" if you were to lose your husband or wife or parent or child tomorrow?

Do it TODAY!

Sending my Love

Four years ago today, I married my true love.  We knew on the day we said our vows that "in sickness and in health" already was a reality.  But, I demanded that Tyler marry me that day, whether he was released from the hospital or not.  He spent the week before the wedding at Stevens Hospital, recovering from pneumonia and getting his white blood cell counts down.  We canceled our honeymoon cruise, but still had the big party and officially joined our lives together.

Initially, we kept Tyler's diagnosis a secret from the many people coming to join us at our wedding.  We wanted our wedding day to be one of joy and celebration at the fact that we LOVED each other.  With apologies to the many loved ones who joined us there, I still think that was the right thing to do.  Our wedding day was filled with joy and love.

Tyler started to share the following week, which prompted a great deal of shock as people heard the word "cancer".

One of the things that amazed me over and over again as we fought this battle was the outpouring of support that we received.  We could never have fought this battle on our own, but had friends and family who went above and beyond to help.  People visited us in the hospital.  Coworkers from both of our jobs made it possible for us to visit doctors together, regardless of the impact to their own workload.  Friends and family helped us to raise thousands and thousands of dollars to fight this disease.

And through it all, we had each other.  When I stop and think about how much I have lost, I can't stop the tears.  Tyler loved me and knew that I loved him.  In that one fact, we were very, very lucky.  Although he often felt like he wasn't living up to what I needed in a husband, I would not have traded one day of our time for anyone else.

I would have happily sent the leukemia packing, but know that if I had to take CML to have the blessing of Tyler, it was well worth it for me.  I just hope that he believes me now.

Missing the "We"

One of the really great thing about being married to Tyler was that we had a solid partnership.  As I make this transition, I find myself saying "We like this" or "We do that" and then I stop and realize that I am supposed to just talk about me now. It's strange to realize that two really did become one in our marriage.

Many people may not realize the work that Tyler and I put into our marriage before we ever walked down the aisle.  As we were first dating, I admitted that I had trouble communicating.  Although I have learned LOTS from my darling husband (who would share anything with anybody), I still struggle to share some of my innermost feelings.  In order to build a solid foundation of communication, Tyler and I decided to learn more about how to communicate better.  We read The 5 Love Languages: The Secret to Love That Lasts
and found that understanding the concepts in the book really helped us to communicate better about our relationship needs.  Tyler's primary language was Quality Time, so he just needed to remind me of that when I would get too busy with other things.

The other book that we used to develop our communication and highly recommend to other couples was The Hard Questions: 100 Questions to Ask Before You Say I Do.  This book had questions on all sorts of topics, such as what is your dream house like and how many kids do you want and how do you feel about religion, and anything else that could be helpful to discuss.  Tyler and I would answer all of the questions in a chapter independently and then get together and talk about our answers. We were lucky in that so many of our answers matched the other person's, but we also found ways to understand what was important to each other as we worked through the chapters.  This book certainly isn't for everybody, but I do recommend to anyone who wants to work on comunication or wants to go the extra mile to build a strong partnership.

Just my two cents on something that really worked for us!

I miss Tyler in little twinges throughout each day.  For example, it has been hard to watch American Idol this year because that was something that Tyler LOVED to watch.  We have a DVR, but Tyler could never wait to start the show late. He was just so excited to hear the songs and see the performance. 

I hope that each of you will hug your loved one today, just remembering that things would be much different if they were missing from your life.

Temper Tantrums

I don't know why, but this morning I seem to be throwing a temper tantrum.  It's just not FAIR!

While I am thankful for the many blessings in our lives, I am also envious of those being denied to us right now.  The simple pleasures of sleeping in our own home or eating a meal together seem so very precious when they are denied.  We are approaching the end of a month solid in the hospital and are both extremely tired of this. Tyler can hardly sleep at night because of worries that he will choke on his own saliva.

We really just want to live a normal life!  In fact, boring sounds quite wonderful...

Thank goodness we had a year or two together before we got married, as our entire marriage has been overshadowed by this darn battle with leukemia.  Sometimes we can forget about it for awhile, when Tyler is feeling good and strong.  But it seems like we are always drawn back with a new outbreak.  In fact, those relapses seems to happen anytime I want to travel....  Do you think Tyler is trying to tell me in a subtle way that he doesn't want to travel as much as I do?

I am envious of the family and friends who have started families of their own and are watching their children grow.  We would love to have a family, but treatments have made that unlikely without adoption and our lives are really too crazy right now to add more complications in...

Tyler is sick of being stuck in the same room, mostly in bed, every day.  I am sick of wrestling with whether or not I am making the wrong choice every time I am doing something other than being with him in the hospital.

I know everybody has their own demons and that no life is as easy as it looks.  But for today...  I am thoroughly disgusted with our personal battle and would love to call a cease fire for a few years (or decades?!).

Happy Anniversary!

Today is our 3rd Wedding Anniversary!  We are SO blessed to have found each other and to have forged a strong partnership.  Several people have commented on how tough it must be to face cancer so early in one's marriage, but I think that our battle has allowed us to grow even closer to one another.  Tyler is an amazing man and blesses me with his kindness and love EVERY day!  In fact, a nurse at SCCA just asked if we were newlyweds about a week ago!  We choose to be as much like newlyweds as we can.  :) 

Unlike so many others, when we said those vows to love each other "in sickness and in health", we absolutely knew what we were committing to.  While I must admit to being ready for a few cancer-free years with Tyler, I would not trade my time with Tyler for anything else.

Happy Anniversary, Tyler!

Dinner and a Movie

My husband talked me into a date night last night. I can't believe that we are finally able to get back to normal things, like going out to dinner and a movie. We were so excited to get out and spend time with each other!

Now that he is past his 100 day mark, Tyler is feeling more comfortable being out in public. We still have to avoid large crowds and sick people in general, but we have more freedom to ge back into our regular life.

We also had our first appointment with Dr. McGee yesterday afternoon and it went extremely well. We have a great deal of confidence in the staff at Dr McGee's office, so we were happy to be under their care again. Tyler will be going in for weekly appointments initially, but we are hoping to taper off as time passes and he continues to be doing well.

No obvious signs of GVHD and Tyler continues to pack in the food, so he seems to be feeling good again!

Anniversaries both Glad and Sad

This is our week of anniversaries... Tuesday is our 2nd wedding anniversary and, while we aren't planning a huge celebration, I must admit to being incredibly thankful to have Tyler in my life. Even as he battles his own cancer, he is thoughtful and loving to others around him. At our rehearsal dinner, I toasted him saying that I knew he was the man for me when I realized that he had no "but". With previous relationships, I had said things like "he's a great guy, but..." With Tyler, I never had to make a statement like that. I'm extremely proud of the man I call husband!

A sadder date for us, February 19th was the 2nd anniversary of Tyler's cancer diagnosis. I'd thought about both anniversaries as the days approached, but then got so busy that his cancerversary actually slipped my mind. That's a good thing, right?

Learning that Tyler had cancer 5 days before the wedding certainly has colored much of our marriage, but I think it has also enriched it in many ways. We were aware from the very start that our time together was precious and that our partnership was truly going to be "for better or for worse". While we had laid a lot of groundwork for this in the years before, I believe that we cemented at our relationship on the day of diagnosis and not at our actual wedding ceremony.

Andrea (Tyler's mother) says that she'll make us an anniversary dinner, so I'm looking forward to a lovely evening at home tomorrow night.

May you be as blessed in love as we are!

Miscellaneous Questions and Answers

A friend e-mailed a few questions about Tyler and I thought that others might have the same questions, so I should answer them on the blog.

1. Is Tyler sleeping all the time (like before)?

Tyler is not sleeping full nights yet, but he is sleeping better. He's actually been using a drug called Ativan to help him sleep at night, but gets about 6 hours of sleep in a typical night.

2. What is the status of Tyler’s foot? Has it returned (or worsened) due to recent radiation and chemo treatments?

Tyler's foot continues to be a source of frustration for him. While he can move his toes about an inch upwards, the foot is still extremely sensitive and largely unresponsive. It has not worsened, but we expect it to be a long time before it completely heals. There is also a risk that it might never heal completely. Tyler worries that he will have trouble working if it does not heal, as his job as a groundskeeper requires him to be pretty mobile.

3. Is Tyler reachable via email?

Tyler is not currently reading his e-mails, although he will probably catch up on them someday. If you need to get a message to him, you can e-mail me to pass along your message.

4. Is the radiation risk completely over? Did it “wear off” or something, such that he must no longer be isolated?

As I understand it, your body actually processes and excretes radiation through your urine. So Tyler got a radioactive transfusion Thursday before last, but his body was able to process and excrete the radioactivity over the days that followed. He was released as soon as he was under the safe guidelines for our state. The radioactivity level would continue to drop as his body continued its normal functioning. While we haven't measured him in the last few days, I would guess that he is probably not radioactive anymore.

5. Is TBI a round of intense radiation? I did not realize that he could be an outpatient at this point in the process.

Tyler's TBI tomorrow will be outpatient, which sounds like it is normal for these procedures. Actually, we were also surprised by how much of this is outpatient. According to the radiation oncologist that is handling Tyler's TBI, he is getting the smallest possible dose of TBI. They are only doing this to help suppress his immune system so that it will accept the foreign marrow.

6. Are the doctors already discussing possible complications due to partial match (half-match?) on the donor vs receiver? I did read the CML booklet on this, and it of course acknowledges a wide range of possibilities.

The doctors prefer not to tell us about things like possible complications, although they likely discuss them in their morning rounds (when they discuss each of their active cases). The half-match issue has been my biggest worry throughout this process. It is my opinion that someone wanted Tyler for this study so they never attempted to search for a better match in the world bank. While we pushed and pulled on this issue, we made no headway in getting them to give us additional options for the transplant.

There is however, an upside to using a parental half-match. Typically, you experience less graft versus host disease (GVHD) with a related donor. I'm not sure how things will work since there will likely be an increased risk for GVHD with a mismatched donor and less with a related donor. I'll try to address GVHD more in a future post, as it is a big issue with transplants.

7. Are you able to work a reasonable number of hours? You must be running constantly, exhausted.

My coworkers have my undying thanks for allowing me to be with Tyler throughout this process. I'm not sure how I can ever make it up to them, but their flexibility has made all of this possible. I work as often as I can, often from home or the hospital. We've pared down my responsibilities as much as possible, but I feel guilty not helping out more. I was working 1-3 days per week, but am mostly off now. I only worked 4 hours from home this last week and plan to be off completely this next week as well. I'm the lead on a big project at the end of February, so we'll see how I balance work and home as I get closer to that deadline.

I also owe my thanks to the friends and family members who have helped us to keep up with day to day tasks. Several of Tyler's high school buddies came up and weeded our front yard (since I would have probably pulled out all of the plants without Tyler's guidance) and completed some home maintenance, Debbie (my mom) who helps with grocery shopping and house cleaning, and Andrea (Tyler's mom) who helps get Tyler to appointments so that I can sneak off to work from time to time.

Several others have offered to help, but timing doesn't always work. Even if we haven't been able to take advantage of your kind offers, we certainly appreciate them!

We are both getting tired though and are ready for some time of normalcy. Sadly, I think we have a little bit of time before we get there. If Tyler's side effects are kept to a minimum, we may have some downtime over the next 2-3 weeks while waiting for engraftment. Once the new marrow starts making blood, any side effects that he had should start to diminish.

I hope that answers a few of your questions as well!

2 Marathons Run

Tyler and I have just completed 2 marathon days at SCCA. On Wednesday and Thursday, they gave him two chemo treatments each day, which meant we arrived at SCCA at 7:30am for a quick lab and then headed up to their infusion suites to begin the day. We left between 9:30 and 10pm both days, so we had long days.

Most of the day was hydration and side effect management for a drug called Cytoxan. Tyler only has to get that drug these two days pre-transplant, but will get a 3rd (and larger dose) a few days after transplant. For the transplant protocol he is on, Tyler had to get 4 hours of hydration before they could even start giving him the drug. That's because this particular drug can cause your damage to your bladder. Tyler got so hydrated that he ended up having to urinate (or "void" according to the medical staff) every 60-90 minutes. That kept the chemo from settling in his bladder and causing trouble.

His other chemo was called Fludarabine (or "Florida Bean" as we like to call it). He gets it daily Wednesday through Sunday, but it is a quick one and takes less preparation.

Tyler did FANTASTIC both days! No nausea during the treatments and tons of eating both days. I sincerely hope that this continues through the transplant day next week. After almost a week of isolation, Tyler and I are both thriving on the chance to be together again, so we just spent the days keeping company and enjoying the hours we could be together. Everything is easier on us both if we can be together and strengthen each other.

With the treatments, his blood production is beginning to fall off. We expect that he will get several transfusions to tide him over until his dad's marrow takes hold and begins to make new blood for Tyler (likely about 1 month from now). We begin that today, with 2 units of red blood cells scheduled.

Transplant -4 and counting!

My Heart is Breaking

I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.

Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.

We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.

We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.

Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.

Who is that Handsome Guy?

Tyler got his haircut today, in preparation for his radiation and chemo. Much to my surprise, he looks even more handsome with his new haircut! I sure caught a good guy when I went fishing for this one. He has just informed me that Kate is the excellent barber that made him look so good. I'm blown away. I just assumed it was done in a barbershop somewhere.

Anyways... Today was another lumbar puncture and the 2nd dose of the thioteppa. I've been praying that the test results on today's CSF wll show a reduction in the leukemic cells. We should know the test results later this week and will try to post without too much delay.

Our First Anniversary!!

This weekend marked our first anniversary and we spent the weekend with each other to celebrate. After a year of marriage, I can truly say that I love this man more than I did on our wedding day. It's such a treat to have a partner to take care of me when I need it and to accept my care when he needs it!

On Friday night we went to watch the Sonics as they embarrassed the Portland Trailblazers. On Saturday we spent the day watching movies and talking and being together. Both of us made a commitment to avoid any other activities -- we just spent time together. It was one of the best weekends that I've had -- no outside responsibilities and lots of time to relax!

Thanks to those who remembered our special day!