Tick Tock

February 16, 2013

Cancer seems to take so long to figure out. There are times I think Layne is a human science experiment. I'm sure that if we did a survey, most cancer patients would feel that way. It would be great if there were a set of treatments that worked for everyone, you did them and you were done. I'm sure if we could figure that out - we'd save lives, improve the quality of life for many and even make a few bucks in the process. But alas, it doesn't work that way.
One of the things that continues to amaze me is the time it takes for each step along the way. For example, when Layne first had a colonoscopy to attempt an assessment of what was going on, the cancer was found. I don't think surgery happened for another month. (I'll have to check the calendar, but I really think it took about that long.)
The reality is that as we're trying to figure out what's going on - time keeps moving forward. Time is not something that's on the side of the cancer patient. There are other things we'd love to be doing with our time together besides chemo treatments. There are other things we'd love to spend our money on.
When we first learned that Layne would be taking some time away from work, we thought we could travel a little bit (not very far or very often) with our family. It doesn't really work that way. The schedule has to work around chemo and the finances have to work around treatments, prescriptions, and travel for more surgery/treatments.
It might sound like a complaint, but it's really not. It's just the way it is. I'm glad we do get to have chances to get out and do a couple of things. We'll have the opportunity to go to Hawaii, get the kids to Disneyland (we think), head to Seattle, and maybe even head to Southern Utah in order to see the sights (and family). (We haven't done much planning on the last one or another trip to CA to see Layne's folks.)
Amidst all the rambling, I think the point is that as we're busy living our lives in a way that we hope will help Layne be around a little longer - we're also aware of the fact that it all takes time. And, that is something I wish we had more of to work with right now.

Hawaii or Bust

We're on the countdown for Hawaii!

Things we're looking forward to:
NO Snow
Spending Time Together
The Ocean
Relaxation
Making Memories
Walks on the Beach
The Full Experience

Things we will not miss:
Planning Meals
Doing Dishes
Scope and Sequence
Wool Socks

Thanks again to my siblings/their spouses for making it possible and to my parents for taking on the challenge of our children for the duration.

(Layne hasn't been feeling well today. We're hoping that he'll improve in the next day or two. It's the kind of 'not feeling well' that I would not force onto an airplane.)

News from Houston (second time)

I went to Houston again to visit MD Anderson.  They did a CT scan and Wednesday and I met with the oncologist Thursday.  The long and short of it is they still don't know if I qualify for HIPEC.  There was no new growth, the tumors visible in the last scan had not changed significantly, and the area near my bladder did not show any growth (that was questionable last time).  Those are all good things, but it was still not clear enough to say yes.  So for now the plan is to continue with the chemotherapy I am on and return to Houston in two months for another check-up.  If things work out for HIPEC then, it may happen in June.  But all of that is subject to change.

Layne

Extended Miracle

In Relief Society today we discussed the Holy Ghost. When the question was asked about a time when we benefitted from someone else following a prompting, I couldn't think of anything. I knew there had to be something - but, nothing came to mind until later in the lesson when something that was said reminded me of Layne's surgery in June.
The surgeon had taken out all of the tumors he had seen. The typical protocol is to just leave them in and let the chemo take care of them. At the time I was grateful that he had done it. The doctor had made it very clear that he just 'felt right' about doing it, so he did. I remember thinking that I was glad he had and that even if it had no medical ramifications, it gave me some peace to know that all that was visible had been taken out.
Since our conversation, Layne has had tumors return and they have grown. The time in between the two scans was only about two weeks. The tumors found were smaller than what the surgeon had removed. I was grateful again at that time that they had all been removed during surgery.
The Holy Ghost reminded me again today that he had prompted that surgeon to do what was best for this scenario. We didn't know anything about Layne's type of cancer at the time. We didn't realize how aggressive it is or how quickly the masses would grow. If the original tumors had not been removed, I truly feel like there's a possibility Layne would already be gone.
Today, I'm even more grateful. I realized even more how important it was for that to happen. It's great to feel peace about something. It's even greater to know that in my ignorance it really wasn't about me feeling good about it. (Although, it's a nice side gig.) The knowledge we didn't have at that time made it so we couldn't have realized what a great blessing it would be medically also. Those tumors were large and would have grown and spread rapidly. Someone, somewhere knew that even more than the surgeon did. They needed to come out, or there would have been some serious consequences. At the time, there was no reason to believe that it was anything more than the slower growing, generic cancer. (Which would be great right about now.) It was very clear to me that I was being reminded that there is someone who knows the future...and each of us in a very personal way.

Cupids, Flowers and Chocolates

Valentine's Day is not a favorite for Layne. He's not a fan of anything he's 'supposed' to do just because 'society' says he's should. It's on the calendar - so, you're expected to do something romantic and enjoy being together...and pay extra for it. It's not the being together or even the being romantic that bothers him. It's the idea that someone else is going to tell him when and how. He thinks it's all a ploy by retailers to make more money.

As a result, I received flowers today. The thought behind them was, 'Yes, I do love you and enjoy spending time with you.' Phew...I was a bit nervous about that one. It's fun to have flowers and I'm grateful for them. (I think part of the motivation may have been a comment about him bringing flowers randomly when we were dating. Very Romantic!)

Celebrations

I mentioned that we celebrated when Layne finished 12 chemo treatments. Our family also celebrated last month when we finished the Book of Mormon (again...we really should keep track).
This month we have marked in simple ways Groundhogs Day and Chinese New Year. We are having some serious discussions about how to celebrate Valentine's Day. Well, at least the kids and I have done so...I'm not sure what Layne and I will be doing. (It depends on how 'romantic' he's feeling. I might just have to talk him into something...something simple I'm sure.) We still have President's Day and a child's birthday to celebrate later in the month.
We celebrated the 100th Day of School last month too. The kids were excited about making progress!
Layne heads to Houston again in another week or so - we'll see if there's anything to celebrate on that front after he's done with his appointments there.
P.S. A day later...I forgot to mention Mardi Gras...which is today! Layne and I will be going to the temple on Thursday and possibly out to lunch. (It's great that he has a 'flexible' schedule these days.)

Clues We Homeschool

Originally Written December 21, 2012

We have white boards and other school supplies in our front room.
We go to concerts in the middle of the 'school day'.
We plan our outings around when there will be fewer crowds.
We're used to people looking at us funny when we're out in public during the middle of the day.
We take breaks when we need them...not when the bell rings.
Our children like watching shows like 'American Ride', 'NOVA', and 'Mythbusters'.
A typical response when asked to join us; '...just one more page', or 'I'm almost done with the chapter.'.
We love all the free events/resources at the library. (We're a bit partial to free events in general.)
It's not unusual for our library cards to be 'maxed out'.
We love to go online and find out random (and not so random) information.
The kids love to pursue their own interests.
We read, write, and do math in real life ways. (Along with science, P.E., and art.)
There's no 'homework' in the evening.
We get excited about 'cool' resources.
We have our own inside jokes.
We get to be together.
Our family is stronger than it used to be.
We multi-task with hikes up the canyon or along the river taking in several curriculum topics.
It's amazing what kids learn when they don't even realize it.
 

Empty

I do fine most days and other days things creep up on me. Tonight I was hugging Layne and started to cry. The thought, 'I don't want you to die.', came into my head. I don't want him to leave. When I try to imagine my life without him, I just can't do it. I attempt to do that because I'm hoping that it will get me more prepared for the reality that's ahead. I don't want to go without the hugs (and all that other 'mushy' stuff). I have no desire to independently raise our children on my own. I'm so used to saying 'we' instead of 'I'. It will be a tough transition all around. I think I will have a tough time trying to get to sleep in an empty room with an empty bed. I will need to work hard not to have an empty heart.

Baker's Dozen

On Friday we will go in for Layne's 13th infusion. When we first started, we were told they would try twelve and then go from there. I just heard the 'twelve treatments' part. So, after this last one we had to celebrate...at least a little bit. We didn't do too much. Somehow it was still important to me to mark a milestone. I needed to acknowledge that we had accomplished something. Layne thought I was a bit silly because there will be more treatments. I realize we're far from done. But, at the same time it seems there has to be some sort of recognition along the way. It's too long of a tiring uphill hike to not take a moment to note the ever expanding view.

God Bless Us...

...every one.
This past holiday season we felt a bit like 'Tiny Tim' in 'A Christmas Carol' by Dickens. It was a time when we could have felt like we didn't have much to celebrate. And yet, we felt the true meaning of the season manifest in all of those who were so generous, giving and kind hearted that we couldn't help but feel blessed and loved. We couldn't help but feel the true meaning of the season and the joy that comes as the love of Christ is shared.
We had a fabulous '12 Days of Christmas' experience. I can't recall ever being the recipient of such a thing. But, this year was different in so many ways. I mentioned in an earlier post that it took me a minute to register the reason might have something to do with my husband having cancer. (Duh!) We were so grateful! It was fun to watch the kids get excited about it. Amazing items kept rolling in every day. Thank you to whoever you are!! We will always remember.
It was odd to think that this might be the last Christmas with Layne around. I'm not convinced that it is...it's just a possibility. We didn't do anything different in the way we celebrated. I think I reflected more on traditions and family togetherness that happens around that time of year. There were also a couple of things that just never got done. We were busy with other things and I wanted to focus on spending time together. It seems a bit selfish now that I just articulated that. I'm hoping everyone understands. And for some odd reason I don't feel compelled to apologize. That is rather selfish. I guess it's a priority thing. We didn't have time for everything - so, we just went with what was important in that moment. I'm glad we did. I guess it's a bit like learning to say 'no' when you really need to.
Thank you to everyone that helped to make our season so memorable. We truly will remember and continually be grateful.

Brrr...

It's been cold the last little while. Our basement is the coldest part of our house and the desk with my favorite computer is in the basement. (It's our only desktop computer.) I have not been inspired to spend too much time in front of it while the weather has been freezing (or less). I'm not a fan of single digit weather. We enjoyed our holidays...and we've had our snow. I'm extremely grateful that the weather was a bit warmer for a couple of days. It helps my heart to see sunshine and be outside with the family.