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.

Another Scan

Layne will have another scan happening again this Thursday. We'll know the results on Friday. If things are still looking alright - he'll have chemo that afternoon. He's been feeling more pain lately and it could be an indication of tumor growth.

As far as logistics go...I'd rather know the results of the scan before I fly out there. I'm not sure I want to get there and find out that the treatment isn't happening because there's tumor growth. If that's the case...maybe we'll take a trip down to Galveston before heading back home. Or, maybe we'll take the couple we stay with out to dinner for being so kind to us.

The Usual

This is my first attempt posting on a blog from my phone. In a way, I feel a bit high tech...in another way, I feel like it's about time I stepped into the current century (or at least the current decade).

We're at MD Anderson right now. Layne's getting hooked up. They were able to use his port this time. There have been times when they haven't been able to get return on it and they have to put the needle in his arm. It's easier and less painful for him to use the port - so, I'm always glad when it works out. It'll take about 4.5-5 hours. Each patient is in a separate room here. They'll come around with a menu for 'room service' in a little bit. When he's done I'll drive us to the Franklin's home (20-30 minutes). I think that's pretty much it. Of course, it all starts with flights and lots of waiting - both at the airport and at the hospital.

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.

Huntsman Today

Layne is doing chemo today at Huntsman. I'm glad he's starting in the morning at a place close by...instead of a place that requires a flight home and us being away from the kids. It also typically means that he starts his chemo in the late afternoon...which makes for a long day.
I'm going to do some things with the kids and then head up. I dropped him off this morning so he could start at 7. The boys road their scooters today to seminary: 6:45 AM, still dark, 25 degrees F. Bless their hearts (and the rest of their cold bodies).
I appreciate all the sacrifices the kids are making for their Dad and our family. The boys road their scooters this morning and all of them will be getting things done while we're gone. They do quite a bit to take care of themselves and each other while Layne and I are away.

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.:}

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.

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.

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.

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.

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.

Lately...

We've been doing summer things lately. We've been having fun and doing some projects. We've been wondering a bit about what comes next and we've spent most of our thinking time considering other subjects.
The kids have been enjoying the lazy moments. Sometimes I wonder if they understand what's going on with Layne and then I realize that I'm not sure about that either. I wonder how they will be doing a year, two years...five years from now.
Layne seems to be more tired than he was before. He continues to take a low dose of chemo daily (along with other medications that are attempting to counteract some of the reactions he's experiencing).
I have been doing my usual...can't get enough of learning more about learning. Someday I want to figure out the perfect homeschool combination for us. For the near future, I have a few plans to put together in order to implement them.

Next Steps

Layne met with the oncologist last week. Chemo is no longer an option for him. He was told about a couple of clinical trials that are available. They don't sound very fun. I was told about the side effects and now just don't want to think about them. We're not sure what will be happening next - we're still trying to make sure that is the next step for him to take.
It's been a year since his last colonoscopy...so, that will be scheduled and taken care of soon. He also has a vision test. Both of the clinic trials include vision issues as a possible 'side effect' so they have to check and see rather his eyes are healthy enough for it.
During all of this, I am very aware that there are tumors inside of him that are probably growing. Some prevention on the progress of those would be really great right about now. It always takes time (and then some).

But Wait...There's More

The results are back. The tumors he already has have grown, there are also two new tumors that have developed since the last scan. They're all still in the same area of the body, so at least that part is good...no spreading to other organs. He will not be doing HIPEC.
They also found multiple blood clots in his lungs. We'll need to start giving him the same injections we did after his surgery. (I say 'we' - but, that really means that I get to do that.)
I had a feeling that HIPEC might not be the way that things would go - so, I'm not surprised about that part. As we talked about it - we both still felt like things will work out the way they are supposed to in the end. It's hard not to know the next step. It's obvious the second type of chemo wasn't working...so, we'll have to go from here. Layne did mention some sort of group that is doing some testing right now. I don't know exactly what that is or if it's an option.
A year later, it still feels like we keep going back to the drawing board. Although, we now know two types of chemo that won't work and that HIPEC is not an option. We just have to have the faith to take that step into the dark.

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

Results from Houston visit

The trip to Houston was good.  I enjoyed meeting some new friends, loved the Texas BBQ, and the weather sure beats Salt Lake City in December.

The oncologists at MD Anderson told me they are not sure yet whether I am a candidate for HIPEC.  They had two concerns that would need to be addressed before I could receive the treatment.  One is that they don't think my current chemotherapy is working, and HIPEC would not be effective without a chemo treatment that stops the cancer.  The other concern was that I may have cancer near my bladder in a place where they could not surgically remove it, again making the HIPEC ineffective.  I think Teresa mentioned these things in her recent posts.

Anyway, I will meet with my oncologist here in Salt Lake on Tuesday and do a session of chemo on Wednesday.  I think the plan is try another kind of chemo, and then follow up with scans again in a few months to see how things are working. 

Layne

The Saga Continues

It would be really great if we could just be done with cancer and move on with our lives...but, even as I type that - I know that being done with the cancer ultimately means that Layne is gone. I don't want that either. I'm so grateful for the time we've been able to spend together the last few months.
Having said that, I got a call from Layne this morning that I just can't get out of my head. Facts we were fairly certain of were confirmed. The chemo he's been doing is not working. There are new growths since all visible growths were removed during his surgery.
The scan that was done this week, shows a mass located in a spot where surgical removal would be tricky...too many blood vessels surrounding the tumor. They informed us that the next step would be to go in and check the site to answer a couple of questions. Is there an actual tumor there? And, could it be removed successfully? If the answer is no to the second question, there will be no HIPEC for Layne.
The other factor is finding a chemo that works for him. His oncologist was going to change his treatment starting the next round anyway. So, we'll see what happens there. They suggested to schedule the procedure (to check on the random tumor) for this coming Tuesday. He thought to stay in Houston and get the procedure done so we would know one of the pieces to the puzzle. The chemo would need to wait for at least three weeks in order for him to be able to heal and then handle the new chemo. That would mean almost two months between chemo treatments.
While we were discussing options, it came to my mind that time was a factor. (My chin started to quiver.) We need to do what will give us answers in the least amount of time. So, we're going to go with him returning to keep the chemo appointment he has early in the upcoming week. That way, we can work on whether the chemo works or not. The chemo treatments need to be finished before he does HIPEC anyway (if at all). That way, if we find the chemo is working, he'll go back the MD Anderson and have the procedure done. We'll be able to get going on the chemo instead of waiting for the healing time of the procedure.
As I was talking with Layne, I really felt the impact of the time factor. Not only did I know we needed to have the timing be one of the factors to consider while deciding what to do, I also was very aware of the idea that we might be separated sooner than we've been thinking. We keep thinking Layne has some time left...although, we don't know how much. But, today I had the real feeling that our time is shorter than we think.

Houston

So on October 25th my oncologist had me do another CT scan to see how things were progressing with my chemotherapy.  He said they found two potential tumors in my abdomen, that may or may not have been there since the the last scan in July.  The tumor board met regarding my case again, and although they don't agree with the procedure, decided it would be wise to refer me to a center where they do HIPEC (Hyperthermic Intraperitoneal Chemotherapy).  You can look for information about it online, but basically they open your abdomen, root around for tumors to remove, and then slosh hot chemotherapy drugs around inside the abdomen to kill anything they can't remove.  It is very invasive and they are highly selective about the patients on which they perform the procedure.  But they also have very good outcomes for the patients that receive HIPEC.

I will be traveling to Houston on Monday to visit MD Anderson Cancer Center to see if I am a candidate for this procedure.  I did not receive any chemotherapy yesterday in preparation for this visit, and the rest of my chemotherapy treatments depend on what they decide.  If they say I am a candidate for HIPEC, then I will be doing whatever they say to prepare and my current chemotherapy may end.  If I am not a candidate, then my oncologist said he probably will change my treatments slightly from FOLFOX to FOLFIRI and Avastin.

Hopefully the doctors at MD Anderson will have an answer for me by the end of my visit next week.  Teresa and I will let you know when we find out.

Thanks again for your thoughts and prayers.

Layne

Newest Development

We have more news. This time it was not about Layne's cancer...it was about his work.
Several people were laid off on Wednesday. Layne was asked into 'the office' and was told that they would not be able to match his disability pay anymore. (At least until things turned around financially for the company.) The employees met on Thursday and were assured that those that were there would all be staying. Later that afternoon, Layne spoke with the gal in HR. (She had been laid off the day before and will be staying through the month. She was going to talk with him on Wednesday, but was apparently a bit emotional and took the rest of the day off.) She explained a few more things and made the reality of the scenario sound much worse than it really is right now. She told Layne that he needed to take full time disability leave, that disability insurance would cover 60% of his salary, the Family Medical Leave Act will be terminated in a month and at that time, he could legally be laid off. The disability insurance would still be in place until his chemo was finished, but...with the possibility of being laid off in November...he might not have a job after his disability leave. We would need to sign up for Cobra for our health insurance (with a monthly payment). If he was lucky, he might still have a job and be able to return when the chemo treatments were completed. He asked if he could come in on Friday to finish up a couple of things. And, would working next week be a problem if he needed more time to complete a couple of things? (They're close to marketing the current product he's working on...it was quite possible he was going to need to work a few hours on the week-end in order to have everything ready for a group next week.) She told him that she would OK working on Friday with management...but, that he really needed to not come in the following week, or they could lay him off at that point. When he came home and told me about it. It sounded a little off. It was hard for me to believe some of it because this company is one of those 'just plain good people' kind of places. People are kind, give each other the benefit of the doubt and work well together. Moral is usually pretty high (except when there's a lay off). So, when he told me some of the news...I was a little mad. I couldn't believe they'd just say..."Go on, leave. And, make sure you take your stuff with you because you're probably not coming back." Seriously? They had always been so kind and accommodating. And now, they were kicking out the guy doing chemo! I then cried on his shoulder for about 30 seconds, and moved on pretty quickly. We talked just long enough for dinner to burn and the boys to finish their piano lessons with grandma while the girls were doing their 'calendar binders' with grandpa. (So great to have them here each week. We don't know what we're going to do when their mission is over.)
The real scenario came to light when Layne spoke with some of the management on Friday. Yes, he was asked to go on Disability Leave until his chemo is finished. It will be cheaper for them because his pay will come through the disability insurance instead of through the company. They have no intentions of laying him off in November. When Layne stated that detail, he kind of chuckled. Apparently, several of the others in management (some of Layne's closest friends at work) were all surprised when he asked about it. They told him that he was a great employee and needed him to come back so he could continue work on the project they're attempting to send to market. It's always nice to hear praise. He felt appreciated and relieved all at the same time.
So, the real deal is that he's going to be home for a few months. We'll be receiving 60% of his salary and we're thinking he'll still have a job in January (or February) when the doctors give him the green light for work after his chemo is complete.
We are very thankful. The reduced pay is not ideal. But, we've lived off less...not fun...but, we're thinking it's 'doable'. It will be similar to when we first moved into our home and Layne was doing a Post Doc. Right now, I'm glad we chose to purchase a home that fit with the salary of a Post Doc...instead of going with a salary that he 'could' be making at some point. So, instead of paying a little extra each month on the mortgage...we'll go back to just paying it off for the next few months.
A couple of items we talked about during that first conversation were the possible good things that could come out of this. Layne had the idea that maybe he doesn't have as long as we thought he had and this will be a good chance for him to spend time with the kids. I was glad we were homeschooling. The kids will actually be around for him to see. I also thought of the fact that he could help with some of the curriculum...math and science maybe. Oh...and if there are two people working on my 'to do' list, it might actually get done. Maybe. Layne was also aware that he needed to have a real plan for what he was going to accomplish. Otherwise, he feels like he'll squander too much time and regret it. (We went over some things today.) We're looking forward to some time together as a family. I almost wish there wasn't a need for it, but here we are. We also thought of the fact that I might be able to work on some 'income for the future' options. One of the guys at work to Layne that he could pick up with the homeschooling and I could start working. Hmm...not sure that's the first option I would go with...I don't quite see Layne and homeschooling four kids meshing.
Layne and I have different styles in just about everything...so, it'll be interesting to see how things work out. Maybe this is another opportunity for us to work together better. We're so used to taking on our own roles...should be interesting.

New Low

We went in last week for another treatment. Layne's counts were low for white blood cells and platelets. I was concerned to hear that since it was unexpected. They even double checked just to be sure. I was kind of hoping we'd just 'plow' through the treatments and be done. We had already figured out that he would be done by the end of December given the schedule we were following. So, that's another factor. We will now get to pay even more money because the treatments will go into 2013. The hope was to be done and celebrate a new year with no chemo. Oh well...
I was a bit worried at first because I wasn't sure exactly what that meant for Layne (to have low counts) and rather he'd be alright. He did end up being more tired than usual. There were a couple of times he wondered why he had no energy...as if he felt like he had been given the infusion.
The Doctor/Staff didn't seem to think it was too big of a deal. Apparently, it happens often enough that they didn't seem too concerned.
We're heading in tomorrow to try again. Here's to a good count!