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.

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.

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.

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.

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.

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.

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

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