Huntsman Team

Did I take a picture? Yes. I almost didn't. I'm glad I reached out of my comfort zone to make the request. I will always be grateful for the team he was able to work with at Huntsman here in Salt Lake City. Picture still to come...
Dr. Garrido, Layne, and Cami

The Past Year

I've ben thinking this morning about the past year. Last year at this time Layne was still able to function. We thought the treatment he was getting was helping - at least that was the hope. At one point, we got the news that a scan showed the tumors had shrunk a bit. That was a very good thing. Things were kept at bay for awhile. I watched him get more tired throughout the experience. I watched as he became a little weaker.
The trips to Houston eventually ended. His experience at MD Anderson was over. I then watched as he was told that there was nothing else to be done. The only offering was the chance to be comfortable at home until the inevitable happened. I don't think anyone is ever prepared to hear that bit of news. There are some things that don't take very long to say and yet they literally have a life altering effect. We knew it was coming. But, one is still never fully prepared.
Once home, quality of life continued to go down. It was hard to watch a guy that is athletic, has a keen mind, is a 'doer', a finder of solutions - one who participates fully in life - deteriorate to someone who can only watch and wait.

Change Of Plans

We went to Huntsman today for Layne to have a stent put in. They did the endoscopy and realized that there was no blockage. We were even given pictures. We obviously left with no stent being placed. In a way, it was a tough blow. Usually it's a good thing to hear that 'nothing' is wrong. It's hard to hear there's no blockage when up until that point every indication logically lead to that conclusion. It's mostly hard to hear when you're thinking that it's going to be a solution to open things up so the body will function better with less pain.
Layne has thought for awhile that the lack of space to the small bowel from the stomach will be what will kill him. He's just believed that because things weren't getting through - and, he didn't want a feeding tube (sounds too invasive at this point) that he would die from dehydration and/or starvation. He's really not getting the calories he needs.
Layne is someone that needs answers. Things have to make sense. He's going a bit stir crazy trying to figure out how he's going to die. He's even asked his oncologist and both doctors that we talked with yesterday about a stent being placed today. The not knowing is a very unsettling to him. Maybe it's anxiety that's going to have the final say.
I posted this and then realized it might be confusing. The fact that there is no obstruction automatically means that something else is going on. The thought now is how to work on motility of the stomach. It seems that the next natural conclusion is something going on with the function of the stomach itself. Nobody really knows. Whatever the issue is, he's not getting the nutrients or the calories he needs. That's obvious from the drastic weight loss and lack of energy. His brain is not quite what it used to be either. So, obviously the issues are still the same - just not because of the suspected cause. It was the idea of the blockage that led him to think that's what would eventually fail him. The shift in thought is to go from the blockage to the stomach - not to get away from the idea of his dying because of the nutrients and hydration needed. That's still a thing...just a different cause than what originally thought. I'm hoping that clarifies a bit. Maybe not. I might just review this tomorrow and figure out a much more concise way of sharing the concept.
Layne's a bit frustrated about the whole thing. At first he was saying it was a waste of time. He felt bad about wasting the time of Dr. Adler and the others that helped out. I tried my best to convince him that the procedure was done because those that just worked on him thought it was a good option. Everyone that looked at the scan and listened to the symptoms Layne shared believed that there must have been a blockage. I had to convince him that they wouldn't have done it if they thought there was no reason for it. We were told after the procedure that with about 95% of patients there is a blockage. At that point I told Layne that he was 'exceptional'. He didn't think it was funny. Hmm...

This Week

Sunday I shared my testimony in church and had a few people kindly comment and offer help...with Layne being in a bit of pain. Monday I took Layne to the Acute Care Clinic at Huntsman. There was also a family that unexpectedly brought dinner to our home while we were gone. On Tuesday, we had a family discussion about what happened at the hospital the day before and what it meant. I also went to a bridal shower for my niece. Wednesday was another appointment at the hospital and Layne doing paperwork, cleaning out his desk, and saying good-bye to the crew he's worked with for the past 4.5 years. (He also made it to Young Men/youth group with the boys.) Thursday we cleaned out a couple of things and Layne's folks arrived to visit for a few days. Friday will be more appointments for the clinical trial he's doing - one of them being a scan. (He'll meet with the oncologist the beginning of next week.)

Another ACC Visit

I took Layne to the hospital yesterday (8/3). We were at the Acute Care Clinic at Huntsman. He was in a lot of pain. They did a scan and found that his stomach is distended. The space where the stomach empties has been narrowed by a tumor that is wrapped around it. So, there are two factors involved. The stomach being where it is also makes it hard to breathe. The doctor compared it to being pregnant and not having much room to breathe. He was also having some minor issues with getting dizzy and his heart feeling out of sorts. There was an explanation for that as well. He's now attempting a mostly liquid diet so it'll be easier for the stomach to do it's job and for the contents to pass easier into the intestines. It will just be small amounts throughout the day. I'm hoping something works for him. He's lost 10-12 pounds over the last couple of weeks.
They gave him something for the pain and some fluids. He now has a little different pain management system set up for everyday use.:} We'll see how it goes. I'm not sure I've ever seen him in so much pain.

Another Day

Layne is at Huntsman again today. He'll be there ALL day - 7AM to 10:30PM. No biggie. He's a trooper for sure. The upside is that he's not getting the chemo, so at least he's coherent. The downside is that someone with a great mind and a need to be busy goes a bit stir crazy when sitting all day in a hospital. I'll be going up later to keep him company.

Long Story Short

From 5/14/15
Layne was in the hospital from Monday to Wednesday (May 11-13). On Sunday he had some pain and wondered if he should go into the ER. The decision was made to contact the on call oncologist. He made it through the night and then on Monday realized he needed to go in. The oncologist's assistant (Cami) arranged for him to go to the Acute Care Clinic there at Huntsman. As soon as we got to the room they started working with him on pain management. They did some tests and decided that he needed to stay the night. Apparently, the tumors were blocking the the proper function of the organs in the abdominal area. The next day they did a procedure to place a stent between his right kidney and the bladder. They also used several strategies to help empty the intestines. On Wednesday, he was given two units of blood and was able to come home.

More Waiting

We had been waiting for news regarding a clinical trial. He doesn't qualify. So, now we are waiting again for a different clinical trial and Layne's qualification to move forward. I don't know what the anticipated time frame will be - possibly two or three weeks just like last time. It would also allow him to stay here at Huntsman. Oh how we love the waiting game.

Another Clinical Trial?

Last week, we met with the oncologist here at Huntsman. They're doing some testing to assess whether he qualifies for another clinical trial. We have another week or two of waiting until the results are back. This trial will have him doing chemo on a weekly basis. There might have been some mention about three weeks on and one week off...something like that. It would be located at Huntsman so that would be a huge plus (as apposed to out of state). It seems it's all just wait and see.

Wait and See

It's been a week since all of this happened. We're still not sure what's next. Layne will need to speak with his oncologist here at Huntsman. He was scheduled to meet with him in conjunction with a treatment next week. Obviously, the infusion isn't going to be happening. He's already spoken with someone there and it might just be that he keeps his previously scheduled appointment.
An option to consider would be another clinical trial. Last time we were there, Dr. Garrido asked Layne if he'd be up for getting some paper work going in order to start another trial. That way, if/when something came up, he would be closer to being ready to make it happen. Hmm...I wonder if he knew something.:} We'll see how it goes. Again, it's another 'wait and see' just like everything else has been for the last three years.

Only the Numbers Will Tell

I took Layne up to Huntsman yesterday to check on the possibility of a transfusion. He hasn't been feeling well. It all started when it was mentioned at MD Anderson that his numbers were low. He's been pale and a bit lethargic. He decided against going on Monday - until he came home from doing a couple of errands and was out of breath. I wanted him to promise he'd go in the next morning - but, I know he's a little too stubborn to make those kind of promises. So, it was Tuesday early afternoon when we finally went in. His numbers looked great. They offered to check vitals - I said, "yes please". So, they did and...nothing. So, we came back home. He made a comment about maybe it being in his head. The power of suggestion is strong with this one.:} I'm glad we went to get it checked out. I just wish there would have been a solution. He's still not feeling so great.

Back Home

We came back home last night. We're grateful that my folks were able to come be with the kids. They did lots of fun things together.
Layne has slept quite a bit today. That's out of the ordinary for a guy who says he can't sleep during the day. His hemoglobin was low again on Friday. They offered a transfusion, but he would rather do that at Huntsman. I think I'll be putting it on tomorrow's schedule.

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.

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.

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.

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.

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.