Muffins and Medicine

Layne got up early and made muffins this morning. When he makes muffins, they are not the boxed mix like I use...he makes them from scratch. We had apple cinnamon muffins and blueberry oatmeal muffins this morning. We also had grapefruit and pears too. (A family 'recipe' for him.) He realized this morning that he couldn't eat grapefruit with the drugs he's taking for the clinical trial. I felt bad for him...but, we obviously moved on quickly. I didn't realize he was going to get up and make something. We talked about just doing some pancakes or waffles...something quick and yummy. It occurred to my again that he's just not your average cancer patient. I don't know many guys that would get up early on Christmas just to make breakfast for his wife and kids in the first place...and then this is a guy who had a chemo treatment less than a week ago and doesn't sleep very well these days anyway. It's a good thing he was here to do it. The kids might have had to suffer through a breakfast of pancakes instead of made from scratch muffins on Christmas day.:}

True Meaning of Christmas

This morning we read The Living Christ before we started opening presents. We took turns reading the different paragraphs. Layne read the last one and was emotional before he finished. That usually gets me started too. He shared his testimony and how he's so grateful for a Savior because he knows it's the only way he'll be able to see us again. He then talked about feeling and recognizing the spirit because we could feel the Holy Ghost was there. Megan had suggested before we started that we pray after reading it (loved that idea/love my kids)...so, we did that and the kids were ready to start with the gifts. I asked for just a second or two to say something. They were kind and sat to listen. I then told them about how I was so grateful dad was here with us today and even if it's the last Christmas we get to have him around, I'm very glad I know we'll get to see him again. I shared with them that I know that can only happen because of what Christ has done for us and that I will be eternally grateful. As soon as I said I was done...the kids really were ready to go. Layne went over by the tree and started to hand out presents. The kids had done pretty well - we had already had breakfast and the girls were already dressed and ready for the day. The kids had checked out what was in their stockings...but, other than that they hadn't done a thing with the gifts that were surrounding the tree. It's been different for us to have just our family together this year at our house. This is the first year we've done that since we've lived here (6 years) so it's a new thing for us.

Last Christmas?

Yesterday our ward did their annual Christmas presentation. I sang with the choir. It was just one number and then a hymn. I chose to sit with the congregation. I didn't realize until after it was too late that I was the only participant that had done that. While I was up there, I had the thought come mind several times that this was going to be Layne's last Christmas. It made it a little hard to sing and I'm pretty sure I didn't help much with the overall sound of the songs. At one point, I thought to stay up there until the meeting ended. There wasn't going to be too much time left. I decided to be a rebel and go back to the bench we were sitting on with the girls and Layne. After that...I wanted to sit by my husband for the remainder of the meeting...just because...it might have been my last chance to do so and I wasn't going to miss it. I'm hoping I didn't disturb things too much.


And...this is what I get for leaving this post open:

DONT WORRY MOM MICHELL DID
who is this?
I AM THE CHRISTMAS SPIRIT
for real who is this and why are you on my blog?!
BECAUSE I'M BATMAN!!!!! (AND THE CHRISTMAS SPIRIT)
Is this you Jonny?
NO
Jonny get of my blog!
MOM CHRISTMAS IS IN THREE DAYS CHILL OUT.
Jonny stop it you're not the christmas spirit!
BATMAN?
No! you aren't batman either.
YOU DON'T KNOW THAT.....
yes I do you're my son! got off my blog please.
UGHHHH! FINE!

Yep...thanks so much Jonny. As you can tell...I did not edit his 'contribution'. Apparently, not much is sacred around here. He really is going to publish one day.

Most Recent Treatment

Layne did chemo this past week-end. I took the opportunity to go with him while he had his labs and spoke with the oncologist. It had been awhile since I'd done that. It felt a little more like I was supporting him in all of his adventures. The treatment went as well as possible. He's getting more used it - so, it's more efficient and the side effects don't seem as dramatic.
He came with my parents to come see a play that we were in that night. Saturday was a little bit of the usual...with as few errands as possible. Sunday brought a morning meeting for him and the usual block of church meetings. He went Home Teaching with Jacob after church and then we were home for the evening. I was singing his praises for putting the pot roast and veggies in the crock pot that morning.

Joints

This morning Layne mentioned his joints again. They've been a little bit of an issue this time around - it's one of the things that this clinical trial is testing. I guessed his feet were bothering him because that's been a common one. I then asked about others. He mentioned his hips and one of his knees. He then stated, "I don't know if I can bike today since I can't move my leg."*. Then...being the ever supportive care giver that I am...I laughed. Out loud. What other person is going to give serious consideration to the exercise routine when they can't even move one of their limbs? Maybe it's just me. That and it struck me as funny that it was such a statement of the obvious.

Later, he casually described the 'discomfort' as this knee hurts less than this one. So...the translation would be...this knee hurts and this one is killing me and I'm feeling it constantly.

*From Layne: This sounds much worse than what I meant when I said it.  I can move fine, but raising my leg like I would when I ride a bike hurt, and I felt like I couldn't do that.

Newsflash...again...

In the last post, I realized that we're used to getting not so great news. Sometimes numbers are too low and he's not able to get chemo, sometimes something comes up out of seemingly nowhere (like the possibility of skin cancer or a brain tumor), sometimes there are symptoms from the trial drug or affects of the chemo that aren't very fun...sometimes we find out we get to do things that aren't very fun (such as giving shots or de-accessing a port).
The list could get quite extensive. But, it seems the best thing to do is just move forward. There are times I feel like I've lost the ability to be shocked. I'm pretty even keel anyway. There are times I think about what I've just been told about my husband and think that most 'normal' wives might be freaking out. Or, at the very least holding back lots of tears until a more private moment. I cry the tears at times - but, it's usually not over a glitch in treatment. Sometimes it feels like it's just all in a days work. Sometimes I wonder why I might need to ask the dentist about TMJ because I'm not sure they can do much about the tightness in my jaw or the headaches that produces. (I also don't think my shoulders will ever be loose again.) Maybe I still need to figure out a strategy for stress. I think I'm going to go with more yoga.

Head CT

So, I forgot to mention...Layne is on his way to get a head CT scan. Yep, just drove off all on his own. I know it's one of those things that could lend itself to someone being with you, but these days we just sort of do what we do. I asked if he wanted me to go with him, but he didn't really seem too worried about it. I think because neither one of us believes he actually has a tumor (or multiple) on his brain. Yet, at the same time it's hard not too worry a little bit. On the other hand...last month (or was it two?) it was the possibility of skin cancer on his scalp. So, sometimes I just say, "whatever" and go on with my day. I think he does the same thing. Although, I'm sure it's not quite as easy for him to do since he's the one actually going to the appointments and being poked, prodded, and otherwise being a human lab rat. (It's not very fun to see him hooked up to machines...or knowing that he might be in pain...or as he puts it, "uncomfortable".) We'll see what happens.

Chemo at Huntsman

Chemo at huntsman this friday! I'm not sure words can express how grateful I am that we don't have to deal with flying this week-end and all the details that need to be worked out with kids at home while we're gone. Layne can even just come home once we're done. We can also have the rest of the week-end just be a regular week-end with all of us here.

Cancer Week

It seems like cancer week around here. Today Layne went in (to Hunstman) to have the line on his port cleaned. They haven't been able to draw from it for awhile. They've just been doing the infusions with a needle in his arm. I guess I better make sure I explain... A port is used to draw blood and also available for infusions. Liquids are able to flow both in and out. It's placed during a surgery into the chest so the line is close to the heart. One way to test if it's working is to draw blood from it. If that doesn't happen - it needs to be 'flushed'. You know if nothing comes out there's a good chance nothing will be able to go in. You don't want the chemo just sitting by your heart or something bursting because of a build up. As a result, if blood is not able to be drawn then they don't use the port for intake. The only other option is to do an I.V. needle into the arm. Layne's arms/veins have taken more than they should have by now. All of the times we've been to MD Anderson for him to get chemo he's had to do the needle in the arm routine. Even before that when he had his colonoscopy and a couple of other procedures that require liquids to be run in he hasn't been able to use the port. It's more painful, less efficient, and ends up giving the veins more wear and tear then is good for them. So, having a port that works well is a very good thing.

Back to this week's schedule...

Today he went in to do the simple procedure of having the line checked and his port cleaned. They were able to get a little bit of blood, but not enough to feel confident that intake will be effective. So, he's scheduled for a more invasive procedure tomorrow. On Wednesday he flies to Houston. Then on Thursday he will get himself to the hospital first thing in the morning for labs and a CT Scan (and I'm not sure what else). Friday is a visit to the oncologist and infusion day. Saturday a bit of recovery and Sunday back home again. Fun week, right? I'm sure you're a little jealous. Anyone want to meet us in Houston? It'll be a party.

Christmas Wish

Megan (10 year old) slipped a Christmas list under our bedroom door today. It had a Sunday Shower Schedule on the other side. I laughed when I saw it because that is so her. She loves to organize and make lists and schedules.
The Christmas wish list was for the whole family. She listed each person and wrote something that she thinks they would wish for this year. I might share the others elsewhere - but, for Layne she wrote, 'Dad to be there'. I was touched. I think that's what we all want this year. We want Dad to be around for Christmas.

Upcoming Week

Layne heads out again this Wednesday. He'll have some tests done on Thursday. They'll do some labs and a CT Scan. That'll give an idea of how the tumors are doing. If they are getting bigger he might be done with the study. I will join him on Friday when he'll be getting an infusion (chemo).
I think this time we might have non-stop flights. We had to mix it up a little. It'll be kind of nice to be done in one flight. I guess we better make sure we get good seats.:}
I can't remember if the Franklins (the couple we've stayed with) will be there are not when we get there. I think they said something about being gone during part of November.
It seems the legions (originally thought to be skin cancer by the oncologist in Houston) on his head are under control. He's taking something orally and also has topical treatment. The bumps that were on his back and chest seem to be about the same.

Care Giver

I've been going to Houston with Layne for his treatments every other week. I'm continually amazed what a great job Layne does in keeping track of what medication/drug he needs to take when and the details that go along with them (food/no food, what kind of food, how many hours apart). He also keeps track of what's happening with the different steps of the treatment process. He's been fabulous about keeping on top of the finances and what needs to happen with all of the bills/expenses that go along with what is happening these days (and the last couple of years). Oh...he's also the one that schedules our flights and takes care of some of our travel details.
Layne is good with names and is on a first name basis (when titles aren't used) with several of those that work at both Huntsman and MD Anderson. He also does things like make sure he goes in to work for a few hours a week, serves the youth in our ward, and attempts to spend time with the kids.
I'm not sure I do much to have a Care Giver title. He does most everything on his own. Well, except when he's just had chemo - he actually lets me help. I get to do things like drive him home and take care of whatever random side affects are making an appearance that day. I do a few other things - just not as much as some other care givers do. Layne likes to be independent. I'll take it for now. I know when I'm doing everything he's going to be in pain, exhausted, and fading all at once.

Background Needed

So...long time no write. I feel like there are so many things to write that I'm not sure where to start. It also seems like there is background needed for some things since our lives are just one long saga of one thing after another. I have started a few posts just to be sure I got some of the facts down before I forgot them. I still need to 'publish' quite a few.
We are heading to Houston again this week-end for Layne to have another treatment. At least we think there will be another one. He has to go anyway because if they're going to continue the trial with him he has to get the trial drug this time around. He was supposed to get it last time, but they thought there might be some skin cancer that needed to be taken care of first. (Apparently, that can be one of the side affects for the trial drug.) He went to the dermatologist here and he showed no concern. I guess just the 'run of the mill' bumps all over the head for Layne. Having that happen threw us off schedule. He was told to stop taking the study drug until the skin cancer issue was managed. So, we're glad he was able to get the chemo - but, now he has to still go back for the drug.
We were previously hoping to have a chance to just do the chemo at Huntsman this time. We were looking forward to staying home. It's just a bit easier. There are things going on this week-end that we'll miss out on...and, we would have actually had a chance to spend time with the kids. So, now we have to go back - it throws us off schedule. It was planned so Layne could get a new set (30 days) of the drugs and have all his scans/lab work at the same time...leaving every other visit open to sticking around here for the chemo.

Today

Today Layne was up making breakfast when I got back from picking up the boys at seminary. He doesn't usually make breakfast these days. Yesterday at the same time he was still in bed. This morning he got up to say good-bye to his parents that left after helping with the kids this past weekend. After breakfast, I went to my class and then saw him drive into the parking lot of the Rec. Center as I was driving out. After working out it was time to come home and get ready for work. He goes in a couple of times a week for just a few hours. (He'll do 8-10 hours a week total.) After work he stopped to get the oil changed and then came home. I asked how he was doing. The response was - "I'm tired, I'm tired, I'm really tired...and hungry.". It was strung out a bit...maybe for emphasis. We proceeded with our evening, which included him making the sauce for our spaghetti. He stayed home instead of joining the Young Men in their event this evening. He was tired (see above) and wasn't up for doing something that might take physical exertion in the cold.

Feet and Joints

Layne's feet have been hurting since Saturday. We're guessing too much standing at the party. He's having a hard time getting around. It's slow going.
This morning he woke up with joint pain. I'm not sure if it's been a gradual thing and it's bad enough that he's finally commenting on it...or if it's just starting. I do know he commented about possibly needing a wheelchair at the airport this week-end. Yea. Love it when we start out gimpy. As usual, we'll see how things go.

A Real Trooper

We're having our 'Layne's Still Alive Party' on Saturday even thought Layne's not feeling so great. He decided earlier in the week not to do the 5K that morning. He thought he'd at least be able to walk it. He wanted the whole family to participate together. The rest of us had already thought that it was off the schedule because we didn't have a plan and he wasn't feeling well. He still went into work yesterday (for a couple of hours) and to YM last night. He's a trooper.

Next Steps

Layne is already gone to Houston to start the newest clinical trial. I'm hoping the best for this one. The last one gave him an extra year. That's a good thing, right? I even got to see him run again. It was only a 5K - but, still. I say only not because that's a short distance for me but because it's a short distance for him. Although, at the time he did it - it was a pretty big deal. I'm glad Jacob got to run with him.

When Layne's gone I tend to stay up later and worry more. I tend to feel more alone. I realize more what it will be like to not have him around anymore. Sometimes it feels a bit empty...especially at night when the house is quiet and I'm used to having someone next to me. 

I feel bad he has to do so much of this by himself. I don't think I'd like to have the medical staff poking and prodding me without someone there for support. He does most of it on his own it seems. I'm planning on being there when he has the infusion done. It's hard to watch someone you love be put through that. He gets tired, pale, and sick. I feel a little helpless when all I can do is hold his hand that has gotten cold. I was able to get him food occasionally before - but, it seems like there have also been plenty of times when he didn't feel like eating anything. It's hard to see someone that I'm used to being healthy look exhausted and seem weak...someone that is supposed to be energetic but it takes too much effort to get themselves off the couch.

Well, on to bigger and better things. Or maybe just happier things. I guess I could just stick with - time to go be productive. (Productive...there's a post for another day. It's a bit questionable lately.)

Layne's Still Alive

We're having a 'Layne's Still Alive' party on September 20th. We thought it would be more fun than a funeral. He's already lived longer than the doctors thought he would. He originally commented about it for his 45th birthday, but has since decided that this one would work well. (Maybe we'll do one again when that time comes. I think originally he thought he'd make it that far. But, considering this really could be the last chance we have to do this - no better time than the present.) Our house is a bit 'space challenged' to make such a thing happen. So, we're going to be heading over to the house of some friends that offered to let us use their space. We are grateful. Layne would love to just 'hang out' and play some games. But, I don't think he'll have the time to sit and play a board game. He's invited people from work and yesterday he came home and told me he talked with his trainer at Huntsman about it. Layne's good at making friends with people. I also sent out Facebook invites to our ward and my 'friends' that might be close enough to come (at least I hope I got everyone). There are several people that aren't on Facebook that we'll need to invite individually. Maybe today would be good since it's only a week and a half away.
Today is the day Layne leaves for Houston.

Fall Weather

The weather has been cooling off a little bit lately. At least it seemed like that today. The fall weather that is coming made me think of Layne being in the 'Fall' off his life. Autumn is upon us. I'm not looking forward to winter and the cold that comes along with it.
I wonder what spring will bring. What will the new life be like for the rest of us. There are days that I already miss him.

Current Happenings

This blog has been neglected. It seems like there's so much to say and much of it needs background in order to make sense. I have some things jotted down in drafts - but, haven't edited/posted yet.
Currently, Layne is going to head to Houston this week to start a clinical trial at MD Anderson. We have had issues with insurance that are still being worked on. The team there and at Huntsman are trying to see what other details can be worked out in order to have our health insurance cover as much as possible. That being said, we will still reach our deductible and out of pocket maximums for this year. (We get to start all over again in January.) There are obviously also some travel costs associated with what we're doing. Layne will be there by himself at first and I will join him in time to be there after the infusion. He will probably need some care afterwards. We'll see how it goes and assess needs for future infusions as we go.
Layne feels good about the study scientifically. So, that helps. We'll see how long things last. After the first three infusions being done at MD Anderson he'll be able to switch off every other one with Huntsman. The only thing better would be to have all of the infusions taken care of here in the area instead of traveling. But, at least we can be grateful for an option.
We'll still being doing our usual 'learning' with the kids. They will be hanging out with relatives while we're both gone.
We are so grateful for the continued thoughts and prayers that come our way. Thank you. We have so many people offering to help and we appreciate it.

Insurance Coverage

Insurance will not cover the clinical trial at MD Anderson. There's the out of network factor because it's out of state. There's also the fact that 'ObamaCare' doesn't cover clinical trials. Layne's a little stressed about what to do...how to make things work. He's always so good about figuring these things out. I think in the end we end up paying less for things that some other people might. Well, at least when there are possibilities and options to look into. For example, when he finally finished grad school we had gone years in student housing, had four kids, and all of the school expenses for him. I think we did a thousand dollar loan once (it might have been more than that). We were done paying for all of that not long after he graduated. We also were able to obtain a home with a good credit rating for both of us.

In the case of all the medical expenses lately, Layne's been great about keeping up with all of it. Asking about charges and figuring out the best way to work things like life insurance, health insurance, and how cost of living can all be worked out. 

I'm a little nervous about the whole budget thing when he's gone. I'm involved with what's going on - but, he's always been the one that has figured out the ins and outs. There are things he's worked out that I wouldn't even think of - much less know about how to go doing it.

The issue for the day is how to have the trial covered. Or, maybe we just look for another trial. Hmm. What to do. What to do.

Houston Trip

I dropped Layne off at the airport this morning. He's on his way to Houston for an evaluation/consultation. He'll be talking with the doctor there tomorrow and be back tomorrow evening. We'll have Rachel's first clogging class for the year, the boys will have Young Men (an added Tuesday event), and Layne will be coming in at the airport all around the same time. Should be fun. Life as usual I guess. I'm looking forward to hearing what happens with the clinical trial. It'll be nice to get a yay or a nay, so we can move forward either way. There sure is a lot of waiting when cancer is involved. (At least it seems like that for us.)

Anniversaries

Today at water aerobics, one of the gals mentioned that she was going to be celebrating her 46th anniversary tomorrow. She has a goal to make it to their 50th - thus, one of the reasons she was there exercising. We congratulated her and commended her for her goal.
I was happy for her - but, when she said the part about trying to be around for her 50th anniversary I thought of how chances are Layne and I won't even make it to our 20th. (I think my eyes might have been a little wet at that point...the salty kind - not the chlorine kind. Who gets choked up during water aerobics? Seriously. Who does that? I'm hoping the others didn't notice.:}) In November we'll mark our 18th. It would be a true miracle if he were to still be around a couple of years later. Maybe we'll need to do something cool to celebrate.

Pity Party

Life has been one thing after another around here. The house, the busy schedule, the responsibilities, the financial issues, the yard, the stuff we're supposed to be getting done but we're not...terminal illness...you name, we've experienced it. (Or, so we think at the moment.) And, we've been feeling a little sorry for ourselves for just a brief period. We'll try and get back to our regularly scheduled cheerful attitudes soon. Same time. Same station. Thanks for tuning in.

Colonoscopy Results

There was nothing found with colonoscopy. Layne didn't think that would be where the issue was...but, I guess now there's one thing checked off the list of possibilities. He thinks a CT scan would help. But, we're not sure when that will be scheduled. The idea behind getting the procedure done was to check for anywhere that there might be some internal bleeding. Apparently, that's the first box to check off when checking for reasons behind a low red blood cell count. (At least in this case.)
He seems to be getting more tired and weak. So, we'll see if we can get this figured out soon.

A Void

Layne is doing his liquid diet today for his procedure tomorrow. He didn't eat dinner with us tonight. It was a little odd. If he's home, we're used to all of us eating together. I felt a bit of a void while we were eating...something was missing. It also occurred to me that at some point in time five of us around the table would be the norm.

More Labs

There were more lab results today. There are still issues with the red blood cell count. The main issue is with the oxygen levels. He's to have a colonoscopy as soon as one can be scheduled. (He's not so thrilled.) It seems the conclusion could be internal bleeding and they would obviously want to catch that as soon as possible.

He's been told to not overdo things. That might not be too much a problem considering he's been more sedentary in the past week or so than usual. Although, we do have a family reunion that is mostly outdoors with an abundant amount of activities available. Maybe he and I will bring a book or two.:}

A Visual

We went to the Leanardo yesterday. They had an Animal Inside Out exhibit that we went to see. One of the items on display was the digestive system of a human. Layne pointed out to the kids what section was taken out when he had his surgery. He seemed to think it was pretty cool. The kids were patient listeners - for a little bit at least.

Red Blood Cell Count

Layne had an appointment today with the Physicians Assistant. According to the labs that were taken this morning his red blood cell count is low. She told him she wasn't sure how he road his bike 75 miles in the heat. I don't think any of us know. The test results might explain some of the not feeling well about a week ago. It also might explain how he's not feeling so great again today. They will be doing more tests in a couple of weeks. The gal today thought there might be some bleeding and wanted to do another colonoscopy. Layne convinced her to hold off ordering that until the next set of tests is taken. He's not really a fan unless it truly needs to be done.
Another issue that was discussed was getting enough oxygen to the brain. I will try not to make any jokes about how that may or may not effect Layne's brain power right now. We're hoping all is well.

He Finished It!

Layne did great today with his bike ride. We were there at the finish line. He rode the whole distance! When I asked him if his legs were sore, he shook his head and pointed to his shoulders, neck, head, and arms. I guess I didn't think about that being an issue. His legs got plenty of use today. He mentioned later that he felt like his back end was going to fall off. (Charming, right?)
I was glad Patrick was kind enough to ride with him. He's been working with Layne as a personal trainer at Huntsman. He's good at what he does. He knows what he's doing professionally - he also has great skill in working with people and motivating them. He and Layne have become friends (big surprise). (Layne is great about learning people's names and making conversation. He's on a first name basis with just about everyone that helps him at Huntsman. He even knows hobbies/interests of a few of them.)
Layne made it through the bike ride - and, as expected came home to doing just about nothing for the rest of the day. We'll see how well he can move tomorrow. He might be a bit sore. We're proud of him. Not sure what's next.
One last thought...he did have a glitch while he was riding. He ended up getting a nail in one of his tires. He said it took him about 15 miles or so to figure out what the noise was...it would hit the frame of the bike every time the wheel turned around. It obviously got taken care of and he was able to move on. Go Layne. Go Team Williams!

Today's Facebook Post

Layne's doing a 75 mile bike ride this morning (another Huntsman Cancer Institute fundraising event). As usual, I'm a little nervous. It just seems like a lot (physically). I know he will come home tired, sore, and sunburnt...which is not very fun for a guy who is typically tired and sore and (half the time) sunburnt. Also...there's nothing like thinking that your spouse is going to die from cancer (someday) and then realizing that you're now more panicked than you used to be about random accidents. I will breathe a sigh of relief when we get to cheer for him at the finish line. Go Layne. Go Team Williams.

Already There

'I'm Already There' by Lonestar

This was my song for Layne when he was in Albuquerque for weeks at a time (several years ago). It came out in 2004 and ended up being turned into a song for all of the soldiers heading out to Iraq and Iran. (Good marketing thought, right?) It was played quite a bit on the radio. I heard it today and thought about how it could be a song for when Layne is gone. He'll always be with us.

This is the only video I could find that was about being away from home missing your family instead of military personal leaving/returning home. (I'm not saying that's not important - just saying it wasn't our situation - thankfully.) 

I like the picture in here with the mom, two boys and the little baby. Our boys were young and Megan had just been born that past spring. We got to see him every other week-end...sort of...he still had obligations on campus. He would get home Thursday evening, go to campus for a long day on Friday and then be on campus again Saturday morning and sometimes into the afternoon. We would spend time as a family, do a date night and church on Sunday. We took him back to the airport Sunday afternoons and then wait for over a week and a half for him to come home again. He was always amazed at Megan's growth each time he saw her.

75 Miler

Layne does his bike ride on Saturday. He's going to do the 75 mile version. It came up quick. He didn't get a chance to ride last week because he wasn't feeling well. But, he rode his stationary version yesterday and will ride again on Thursday.
He starts at 7 on Saturday morning. I think he expects us to ride along with him in the van. Or at least be a checkpoints. Yea for us.:} It'll be good.
Wish him luck.

Sick Day

Layne has been sick yesterday and today. He had a fever yesterday. Today it's the no energy flu-like feeling sick he had the first day or two after getting chemo pumped into him for a day.
It has crossed my mind that we are preparing for future times. I get to do more, and he doesn't feel well or do much. I hope it's not the beginning of the end.

Priesthood in the Home

I was reading some General Conference talks and thinking about the priesthood in our home. I'm not sure how to feel about the priesthood being in our home after Layne dies. I know both of our boys have received the priesthood. There are things they are not able to do yet with their priesthood that Layne is able to do with his. I will miss having someone readily available to do those things. We will still have the priesthood in our home. I think I will feel that way even after the boys move out and it's just me (or for awhile - me and the girls). I know that the priesthood will still be in our home because of covenants that have been made. That could not have been done without the priesthood and will not hold true without the priesthood. I'm glad it's a part of our lives - no matter how long those lives last during our experience here on earth.

40 Miler

Layne is on a 40 mile bike ride right now. I'm a little nervous. I'm hoping he comes back conqueror. I'm just hoping he's safe, not getting sun burnt, and is able to walk at the end. He was concerned about the amount of traffic there will be on the route they will be riding. It won't be heavy with traffic, but it will still be different than riding on a trail that's a straight shot with no vehicles. This one is through 'town' part of the way and has a variety of ups and downs. I'm hoping he'll be home in another hour - maybe two.

For those who read this when it was first written, I put stated 50 miles instead of 40, as I was talking with Layne last night, I realized I was wrong. So, the changes were made - just wanted to explain.

Not Normal

Layne and I were just talking about tomorrow. You know, the whole schedule thing. Saturdays can fill up quickly. I started to laugh part way through the conversation. 

Layne was talking about going on a bike ride in the morning. It's a 20-30 mile one. He's not sure how many miles they're doing. (He's riding with his trainer from Huntsman who has become a friend - and, a few other people that are also training.) He was then telling me how a friend that lives around the corner asked him to help with a load of rocks tomorrow. So, that will probably happen after the bike ride. Then, we might take the kids to a movie because one that they've been wanting to see just started at the Dollar Theatre. (Did you notice I even capitalized that? That's how our family rolls. We're too cheap to work it any other way.)

So, Layne's going to leave early in the morning for a long bike ride, help with a load of rocks for someone else's yard, and then have the energy to take the kids to a movie (and stay awake during the whole thing). Oh - and then maybe he and I could go on a date because we won't be going out tonight. Hmm...might as well push the boundaries, right?

I started laughing part way through the conversation because the thought hit me that it just didn't sound like a cancer patient talking. His day makes me feel tired just hearing about it and I won't even be there for the most exhausting parts. He's just not normal.:}

Next Up...Biking

Layne has decided to do a bike race in June. The miles vary depending on what you can do. It's also through Huntsman. I'm not sure about the fundraising part. The mileage marks are 25, 50, 75, and they might have a one hundred forty miler too. At first, Layne wasn't sure about what he could do. So, he's going to make the final decision after he's trained more.
He did a 33 mile ride on Saturday and ended up coming home in a lot of pain. He then tried a 26 miler today and seemed fine. I think the original goal for the race was 50 miles. So, we'll see how it goes.

Results

Layne really did get results on Friday. I should have already posted..haven't been feeling too great. But, that's another post.
There's been more growth. The oncologist is going to get him into another trial as soon as it's available. I knew at some point we'd be back to more growth - I just didn't really want it to come. When I found out - my heart sank. I cried. My first reaction was the thought that it just means the time for him to go is closer than it was before. I already knew that - I guess technically everyday is one day closer. It just feels so much more real. And that's the hard part. It's easier to pretend when things are going more smoothly.

Another Scan

Layne had another scan today. We won't know results until Friday. But, we did find out that Layne has some blood clots again. So, it's back to the needle in the side each morning. Neither one of us is looking forward to that. We'll see who ends up wielding the needle. I started to when he had them last time. But, then I was gone for a couple of days and he just started doing them himself. So much for the 'care giver' title. I'm not sure I do much.
The visit to the doctor on Friday will tell us if there have been any changes in Layne and if there will be any adaptations to his current treatment. It's always a 'wait and see'.

Always a Runner

I was thinking this morning about Layne running his 5K tomorrow. I was reminded of him running a full marathon in 2011. He was all set to run a Ragnar in 2012. But, ended up having surgery the day before instead of being with his team. (He was hoping he could have the surgery and then still run after recovering. It was about a month from the time we found out he needed a surgery until the time he actually was scheduled for it. I guess he thought two or three weeks was enough time to recover from a surgery and still compete in a Ragnar. When it took some time to get the surgery scheduled, he started thinking that maybe - just maybe - the surgery would be after the race. No such luck.)
Our stake has a 5K they've sponsored for the community the last several years. In 2013, our family ran/walked it together. Layne wasn't doing any running at the time. I remember it was very hard to watch someone I love - that considers themselves a runner - not be able to run a 5K. It was hard realizing he really struggled with the fact that he just wasn't able to do it. A harsh reality for someone who used to consider a 5K enough to count for an 'easy' day of exercise, but certainly not a challenge. The challenge would be in trying for a faster time or some other personal best...not the distance.
This year, 2014, he'll be running the 5K that goes along with the Salt Lake marathon. Jacob will be running with him. It's interesting to me that there's something to remember from each year. I wonder what 2015 will bring. (Maybe I'll try (walking) one with him.) I'm reminded that 'once a runner, always a runner'.

Another 5K Post

I had another idea this morning. I was thinking about the fact that some of my family members have offered to run a 5K on Saturday morning in order to support Layne and Jacob in their run. Or, maybe it's mostly to honor Layne and have something else that we can remember together as a family.
I had an idea to have as many people as we can run a 5K that morning. It would be fun to see how many people could do it and from how many different places. We could go from coast to coast.
If there were more time, I would put it out there on some social media and we could see if we'd be able to get someone from every state...every continent...whatever.:]
Hmm...where to go from here. I think I'm just glad he's doing this. He had a tough time yesterday with his run - so, I'd like to give more support somehow. It wouldn't even matter if people ran, walked, strolled, hopped, skipped...

Another Runner

Jacob has decided to run with Layne in the 5K this Saturday. He's been running faster than Layne for the last little bit. I think he started out acting as if he was sprinting and wondering why his Dad was just doing a 'fast walk'. He's able to pace himself a little better now. It's quite possible he'll end quickly and wait for Layne at the finish line. We'll see how it works. Maybe we'll sign him up for track and field. He likes to run fast and jump - so, it might be a good fit.
Jacob is actually signed up now. If you feel so inclined to donate to Huntsman's Hometown Heroes for his run, you can do that here.

Upcoming Baptism

Rachel is going to be baptized on Saturday. Earlier today she was jumping around and saying, "I'm so excited!". Very fun. I'm glad she's excited about it and I'm glad Layne will be able to baptize her.
I remember when we first learned about Layne's cancer, it was around the time of Megan's baptism a couple of years ago. During her baptism, I couldn't help but think that Layne probably wouldn't be around for Rachel's baptism day. I think I might have cried. Partly because I was sad about that, partly because it made things seem so much more real, and partly because it started me thinking about all of the other things Layne would miss that would be milestones for the kids. That made me sad for them and for him.
I also remember being a little misty eyed at another baptism or two as the memory came back to me. I wanted Rachel to be able to remember her Dad baptizing her like he had done with the other kids. So, like I said earlier - I'm glad Layne will be able to baptize her in a couple of days.

Getting Ready

We're getting ready for the 5K. Jacob and Jonny have been running with Layne. They just might run with him during the actual race. I'm not sure about the me and the girls. We might walk - we might cheer.
The 5K is a fundraiser for Huntsman. If you'd like to donate - just click below.

Click here to donate.

Results

We had a chance to look at the scans of Layne today. There has been no spreading - so that's good. It continues to be contained within the abdominal area. The only thing that might be a concern is that one of the tumors seem to have gotten a bit bigger. The growth is not significant enough for the doctor to feel the need to change course immediately, but there might be some changes in the not so far future. There's a new clinical trial that will do things a little differently. The oncologist used the term 'upstream'. So, the new trial uses a concoction that gets to the issue earlier in the process than the current trial medication. They're going to see if there's a spot available for him. He will continue with this trial until then. If he does get into that one - he'll have a 4 week cleansing period and then start the new one. I think if/when the new trial starts it will be similar to what he's doing now...occasional testing with drugs he takes on a daily basis.

Layne commented as we were leaving that he keeps hoping against hope that one of these times we'll go in and see that all of the tumors are gone. I'm not sure about that one. I asked a clarification question today and Dr. Garrido told me that there are so many small tumors that they're unable to count how many there really are at this point. They've always been there, so I wasn't alarmed - just reminded that this is pretty serious stuff. (It makes me wonder if there are some of those really small ones in other organs.) There are just a couple they can see. One in particular is what they are watching.

So, I guess it's onward and upward. 

A Little Girl's Wish

Yesterday, Rachel asked if Tuesday was the day that Layne and I went to the temple. She's pretty observant. There have been several Tuesdays lately that we've managed to go - or Layne has taken the boys. I told her that there are some Tuesdays we have gone but that tomorrow (today) would be a little different. I explained about going to the doctor in the morning to find out about the tests Dad had previously done. I remember mentioning something about finding out if the tumors were any bigger. She told me, "I hope they're smaller. I don't want Dad to die.". Bless her heart. It continues to amaze me how much the kids understand and that they really do want their father to be around for awhile. I wonder if they think about it more than I realize. I want him to be around for awhile longer too.

Feeling Uneasy

Layne goes in for tests today. A couple of days ago he said he felt a little different about this one and he was a bit nervous about what that might mean. He's feeling uneasy about talking with the doctor tomorrow. He's not sure he wants to know. For Layne to make a comment like that...hmm. It doesn't sit very well with me. He's usually the one joking and wondering why I'm crying or nervous about something. I was hoping for more of the same tomorrow - but, maybe not. We'll just have to wait and see - as usual. Feel free to send up a prayer.

Time Again

Layne goes in for tests on Monday and sees the doctor on Tuesday for the results. I'm glad it's only a one day wait this time. It's been awhile since he's been in to see the oncologist. He's needed to do some of the tests for the clinical trial at the same intervals. But, Dr. Garrido gave him a break for 'good behavior' this last time around. So, we'll see what happens next.

5K

Layne's going to be running a 5K in April. It's a nice thing to hear him talk about training again. The oddest part is the fact that he's training for a 5K. He used to be involved in 5Ks as a way to get his exercise on an 'easy day'. I guess once a runner - always a runner.

The run is actually to help raise funds for Huntsman. We think it's a good cause. So, we'll see how that part of it goes. Maybe I'll put a link up for those who might be interested. (Although, obviously no pressure.) I'm pretty sure he thought it would be a good cause for a come back.
I just realized most of this is a repeat of an earlier post. Sorry.

More of the Same

We've been continuing to move forward. Layne is spending a little more time at work. He's also training for a 5K. It seems odd to think of him training for a 5K - he hasn't run in a long time. Back in the day, a 5K was just what he counted as an easy work out for the day. Now it's a big deal. I'm glad. I think he still considers himself a runner.
We're a little back and forth with work. He's working on things and yet they're trying to still make sure they have a space for him. We will need to change our health insurance. We're thinking it'll end up being less coverage for more money. Apparently, that's just how things go.
I'm glad he's been able to do a bit more. But, he still gets tired and doesn't feel so great most of the time. I guess that's what happens when you have a constant supply of chemo in you.

Booorinnng!

I haven't been feeling very well the last few days. I'm wanting to be done. I had some great ideas for things we were going to get done this week with our learning, getting organized, and family fun. Monday we had a decent start, but we've gone downhill from there. The kids and Layne have kind of done their own thing (including New Years Eve) while I have been a bit boring. Layne even took the kids swimming this afternoon. I'm glad they were able to go do something fun. I'm ready to be done with being boring and non-productive.
I had a thought about Layne being bored because he's just not doing as much as he used to - and the reason he isn't is because of his health. I don't envy him. I'm glad he's had the chance to put a few hours of work in each week...especially since supporting our family financially is important to him. It's just hard not to be able to do what you're used to doing. The ability of being productive is such a blessing. Here's to hoping we return to that as soon as possible.