Remembering...

Started to tear up at breakfast - not even sure what I was thinking about at the time...Oh wait. It's coming to me. The girls and I were attempting to plan for the next couple of weeks. Maybe we'll get a few festive things in yet. That got me thinking about last year. I remembered that this time last year we were already leaving town every other week-end for Layne to have treatments in Houston. I remembered how I had missed some of the festivities the kids were enjoying here at home. I was grateful others helped out with that - I was also feeling sad about missing out on activities with the kids. I still love to see them enjoy what they're doing and being part of making some of that happen. (As they get older they take on more of the planning themselves.) I remember feeling like I was missing out and the kids were missing me (and Layne, of course.) It seems like it was so long ago.
I realized that this year is so much different. There's no more travel. I'm in town and able to spend time with the kids. (When I make that happen - another post.) We have a different schedule. But mostly, Layne is gone.

Being Present

This week-end. I remember being in Houston last year. It seems odd that a year ago we were just starting to travel to Texas for Layne's treatments. I was thinking about how I missed going to the Women's Session of General Conference with my girls. They had a grandmother here for them. But, I missed going with them and sharing that experience. There are other things I'm remembering missing out on as well with the kids. I'm glad we're in town this year. The traveling got old pretty quickly. I like being with the kids. I want to be present for them. I know they need the support. There are times I still miss out on the fun things my kids get to do because others have been kind enough to take them places and do things with them while I'm here with Layne. I'm glad they're getting to experience things. I just miss experiencing those things with them. I also feel like there are times when I need and want to do more with them and Layne has a more immediate need - or there are other items that need to be taken care of immediately. I need to figure out a way to be more present with the kids.

No 'Win-Win'

There are times it feels like there is no way to 'win' when it comes to traveling to Houston. If I go, I miss out on events with and being there for the kids. I miss being with them and having time together as a family. If I stay, I worry about Layne and how things are going the whole time. I feel selfish for not being there to help and support.
This time I've thought even more about it. There are things happening at home that I would love to be here for this weekend. There's also a greater chance that the scan will show the tumors have grown and he won't be doing chemo anyway. (If that happens - he's done with the clinical trial because the treatment isn't doing it's job anymore.)
I am remembering today that just last week Rachel brought up our missing out on a memorable Halloween event this past fall. That's hard too - I know the kids notice and remember. I will remember not being able to be two places at once and really wishing I could be. Is there some superpower for that? Sign me up.

Mini Update

Notes on February 19, 2015

So very behind...so, here's a very brief update.
Layne's been participating in a clinical trial. We go to Houston once a month for some of the testing and chemo - in between time, he goes to Huntsman for another round of chemo and to meet with the oncologist here. He's usually pretty exhausted the first day or so. There are other symptoms and reactions that happen throughout the cycle.

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.

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.)

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.)

Whatever Will Be, Will Be

I just dropped Layne off at the airport. He's heading to Houston to do the assessment routine again. This will be the time they'll tell him rather he's able to do HIPEC or not. In a way, I'm a little nervous - in another way, I feel like it'll be whatever it's going to be and we'll go from there. I guess it could be compared to being pregnant, getting an ultrasound, and finding out the gender of the baby. The facts are already there - you're just going to find out what they are. So, whatever will be will be. I remembered that while we were talking this morning. Before that, I was more nervous. Now I feel like things really will turn out however they need to...at least we'll have a better idea about what the next step will be.
IF he does end up doing HIPEC, it's currently scheduled for mid June (just in time for my birthday).

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

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.)

January update

Here is the latest update.  I have now received a fourth treatment with the new chemotherapy regimen (the twelfth overall).  The drug combination is called FOLFIRI, with Avastin as an addition.  The difference between this and the FOLFOX that I initially received is the OXaliplatin, which caused my neuropathy, has been replaced with IRInotecan, which causes diarrhea and hair loss.  The Avastin can cause bleeding.  Sounds like fun stuff, doesn't it?  Fortunately I haven't experienced any hair loss (as far as I can tell) and the diarrhea has not been bad as long as I watch what I eat.  It is really only rough for the first few days after treatment.

The plan going forward is to have another treatment on the 8th of February, and then return to Houston and MD Anderson on the 20 and 21st.  I will have another appointment with my oncologist here on the 22nd and possibly get chemotherapy depending on what the doctors in Houston say.

I asked my oncologist here if I could have a CT scan done before I go to Houston, to see if there has been a change that would necessitate the trip.  He suggested that they will want to do their own scan at MD Anderson (the oncologist I met with there told me as much last time), and getting two scans is not a good idea. 

So in the mean time we are hoping that this is the treatment that works, and that I become a candidate for HIPEC.  At least that is what I am hoping as I think it gives me the best chance for survival, not that the procedure sounds fun at all.  Teresa is just hoping that this can all be done and I will live for a long time.

Layne