BIG things ahead

This showed up on our doorstep last weekend. Not sure what little elf may have left it, but I have my suspicions…

In any event, it’s fantastic. Thank you mysterious little elf!

Lots of stuff has been going on around here…I’ll try to catch you up. As you know, the end of December saw another switch in Scott’s chemo, from Abraxane to Tarceva. It was explained to us that the point of taking Tarceva was to maintain things, in other words, it wouldn’t shrink the tumors, but not let them grow, either, while we researched the next steps. If it worked, it would be a pause button, of sorts.

Since late December we’ve been waiting on insurance approval to proceed with the SIR spheres, the little radioactive particles that will treat Scott’s liver from the inside. Fortunately, the approval finally came through last week…after the Level 2 appeal. (I could get on a soapbox about availability of health care here, but I’ll hold for now…)

As soon as the approval came through, we were ready to proceed and this past Tuesday, Scott had a procedure to map his liver. The liver mapping is a dry run for the SIR spheres. They go in through the femoral artery (the big one in your groin) with a scope to take a look at the vasculature, close off any vessels that might let the particles out to roam around the rest of your body (where you don’t want them) and cause havoc elsewhere, and then scan to make sure that everything is working like it should. It was a long day, but we’re glad to get it behind us so we could take the next step. This coming Tuesday, the first dose of the SIR spheres will be administered. (There’s some question about treating the whole liver at once versus just one lobe at a time…we’ll leave those decisions to the docs to work out.) So that’s where that is.

While all that has been going on, we’ve also been trying to figure out the next options for systemic treatment (ie. chemo). The problem is, Scott has had all standard (and some not so standard) treatments for pancreatic cancer. Seriously…ALL. Thus, our foray into the world of clinical trials has begun. Since Scott is young and people who are young do not normally get PC, we are targeting a class of drugs called PARP inhibitors. In short, for Scott to have PC, chances are that something has gone wrong with his DNA and the PARP inhibitors attack the cancer in a different way that addresses this. (More on this as we move down this road.) So, our search for the right trial has begun. So far, all the trials we’ve identified with the agent we are targeting are Phase 1, which means there isn’t a lot of info about the drugs and they are studying them to see how much they can give of a certain combo without experiencing bad side effects. (More on that too, I’m sure.). We’re casting a wide net, so we may see some of you soon. (Boston and Hershey peeps -you’re on notice). The trials all have an exclusion period from last treatment, so we’re trying to get the liver stuff done while we are working out the next chemo stuff. Will keep you posted as things progress.

…which now brings me to the stomach. Sigh…

Scott has had trouble with his stomach for some time now. He has a duodenal ulcer that just has not healed, most likely from the radiation treatments last Spring, and has significantly narrowed the duodenum itself. We’ve tried everything to no avail, and it has been a challenge to keep Scott comfortable when eating. Along with that, we learned that his stomach is now emptying really slowly (due to the narrowing, we think). All of this adds up to an uncomfortable Scott. Long term, if we can’t get things under control, we have been told that Scott may need a duodenal bypass (separate stomach from small intestines and hook up stomach directly to jejunum, thus bypassing damaged part). Of course, that’s not high on our list, but at least there are options if we can’t get the ulcer under control in other ways. Right now, Scott’s been put on a low residue diet and can’t eat raw fruits or veggies. (Yikes!) Lots of white stuff – no whole grains, no seeds, no fiber. Honestly, we’re just trying to keep calories going into him to ensure his weight stays stable, especially as we get ready to make his liver unhappy again.

Well, I know I’ve thrown a lot at you. Overall, though, Scott is doing okay. Actually, better than okay. The break from traditional chemo has helped him feel better. He’s got more energy and is making a concerted effort to walk in the park every day. He still gets tired easily, but is trying to make a few more appearances while this phase holds. He got to see Cole’s class performance of the Second Continental Congress (Cole was Samuel Adams) and he even made it through the boys’ chess tournament today. And with that, we’re ready to enter the next phase. Here we go.

And, as the sign says…keep praying BIG!

Farewell to a friend

Marisa says: The Internet is a funny thing. It allows you to connect in ways that you aren’t expecting, and sometimes those connections become even more personal than those made in “real” life. When Scott was diagnosed with pancreatic cancer, we wanted to reach out to the community around us. We wanted to keep family and friends up to date on what was going on, but more than that, we wanted the blog to chronicle this journey to serve as a source of information for others facing the same diagnosis. What we didn’t understand until later was how important the connections made because of the blog could become.

One of the people we met very early on was Erin. Erin was young, like Scott. A lawyer, like Scott. And Erin had been newly diagnosed with Stage 4 pancreatic cancer, with mets to the liver, like Scott. The timing of Erin’s diagnosis was such that she was able to move directly onto Folfirinox and was a week or two ahead of Scott in the regimen.

We were very fortunate that she reached out to us. She and Scott compared notes, tips and tricks. She shared the name of the mushrooms her grandmother found for her, that were supposed to help. She talked him through the infamous third Folfirinox cycle. She became a friend to both of us, talking with Scott about things only a fellow PC fighter could understand, and helping me through some of the things that Scott had trouble sharing with me. After Folfirinox, both Erin and Scott went on to radiation, albeit different types. Erin was always researching, trying to understand what was next, what was the plan to move forward.

Over time, the correspondence shifted, and she and I began corresponding more. Scott and I both would eagerly await the next email from Erin, yearning to hear how she was doing, what fun things she had been up to. She inspired us both to keep moving, to remember to enjoy, to not let this disease take over.

The closest we got to “meeting” Erin was looking for her in last Year’s Rose Bowl Parade. “I’ll be the one in the Sock Monkey hat,” she said. Everyone at our house was glued to the tv for the entire parade, for once, trying to catch a glimpse of her.

At one point, I had been particularly remiss in not emailing Erin back promptly. What can I say…the plate was full, dealing with the abscesses, other complications and the craziness of our lives. Erin immediately put me at ease, saying that neither of us should apologize for being out of touch, given all that was going on. How right that was!

As we moved into Fall, both Erin and Scott moved onto Abraxane. However, the tumors in Erin’s liver had taken off. We hoped the Abraxane would get things under control. It didn’t. In November, Erin made the courageous decision to stop treatment and move to hospice. She was tired. She wanted to enjoy herself without all of the crappy side effects. But instead of slowing down, she swam, she visited, she continued to plan a Christmas trip to Disneyland with her family.

I understand that her family made that trip to Disneyland this week. Sadly, Erin didn’t get to make the trip with them. On December 14, Erin passed away surrounded by those she loved and those who loved her.

Erin’s passing was hard for us both. Erin was a friend. A compadre. A fellow soldier in this fight. She understood better than any what we are going through. She and Scott were going to beat this. But, she has gone on ahead of us all.

However hard though, I know that she would want to see Scott succeed, to keep fighting and to keep sharing for the benefit of others. She would kick Scott’s butt, if he thought of doing anything other than that.

My heart goes out to Erin’s family and friends. When you are praying BIG, please say a prayer for them too.

A Determination of Doctors

Marisa says: I don’t know what the word is for a group of doctors, if there is such a word. There are some neat ones for animals, but I just couldn’t think of what would fit. Gaggle of docs doesn’t seem right…bevy, exultation…so I came up with my own word…a determination, because that’s what it feels like when you see five different doctors in five days, and they all come together to agree on the same plan.

Thursday, as you know, was the visit with the surgeon in Charlotte, and we came out of there with some new ideas. Last Friday, we were at Hopkins, where the doc there confirmed the approach suggested by the surgeon and added some new thoughts to the mix. Monday was the visit with our oncologist, who had been talking to everyone and coordinating the next steps. Tuesday was Scott’s stent replacement, where the gastro was rather matter of fact (no liver, no Scott) and threw his weight behind the next steps, and Wednesday we met with the radiologist who will perform the liver-directed therapy. We liked him a lot. He’s a good fit for the team. And Scott has decided to proceed with the SIR-Spheres. We need to do that first, before the chemo-embolization, due to the particle size (first small, then big). The first step is to get insurance approval. Then, they perform a “mock” procedure to map Scott’s liver vasculature, block off any extra vessels and make sure that too much radiation doesn’t leak out of the liver. If all goes well, then we will proceed with two treatments one month apart to irradiate the crap out of the tumors in Scott’s liver, then wait to see where things are before deciding to proceed with the chemo embolization.

In the meantime, Scott has started on Tarceva…which compared to earlier chemo regimens is supposed to be a walk in the park. One pill a day. From how it has been explained to me, Tarceva is supposed to keep things stable outside the liver to give us time to focus on the liver.

It has been a busy couple of weeks on our personal roller coaster. Originally, there was no plan to scan until after the holidays, but as we were reminded, we do not make the plan, we’re just along for the ride, and I think it worked out better this way, to be able to start the new year with a new plan.

Scott has been focused on all of this stuff, instead of getting into the Christmas spirit, but the boys are bursting at the seams, waiting for tomorrow. They are so excited to show us the presents that they made and picked out! I sure hope that sentiment is contagious. Time to turn on the Salsoul Christmas album and start cooking or baking something!

Merry Christmas from our house to yours! I hope you’ve got the Christmas spirit, too.

And, while you are sipping egg nog or noshing on some cookies, please be sure to keep praying BIG!

Clunk!

Marisa says: Living with this disease, it seems like you are always waiting for the other shoe to drop, waiting for when the wheels will fall off the wagon, or whatever other saying you want to insert here. Always waiting. You go along status quo until…something changes…bathroom habits, pain level, swelling in the legs…and all of a sudden, it’s like you are stuck, unable to focus, let alone move forward, until you know what horrible thing must be going on inside you. Your head just knows that this is it. The beginning of the end. The downward spiral. The end of the road. It’s hard. It sucks. It’s the nature of PC.

Upon our return from the cruise, we were sent directly to the ER in Charlotte so they could do another ultrasound to check for a blood clot. Fortunately, all was still clear. Unfortunately, the worry had already begun, back on the ship. Was Scott’s stomach bigger? Was there more fluid in his abdomen? Was that why there was swelling?

The Monday after Thanksgiving brought blood work, to see what the liver was doing prior to Tuesday’s already-scheduled treatment. Tuesday, we met with the doc who was concerned about the abdomen and how lousy Scott stated he was feeling, so he scheduled a scan to see what was going on in there. The initial review was that things appeared stable, no additional ascites was present, and Monday’s liver enzymes were good, so we went ahead with the scheduled chemo, Abraxane.

And then the radiologist’s report came in…

Clunk!

Progression in the liver.

Honestly, even our oncologist didn’t believe it initially. He sat down to review the scan with the radiologist in person, to look at the scans and understand why the report was so different than the initial thought. (The radiologists have super big, high definition monitors, you know.) And upon review, yes, there appeared to be progression in the liver. Some of the tumors in there had grown. But then, you have to compare the scan to the one before it, and the two scans were not done exactly the same way, so it makes it tricky to compare. Aargh! If you are comparing things, you want to be able to compare apples to apples, not apples to kumquats. Also, large chunks of Scott’s liver had been fried in the ablation, so maybe it was all ablation defects, not progression. And if the abraxane really wasn’t working, well crap, for the first time, we didn’t have another plan queued up to proceed to and we had to figure out what was next.

The onco decided to do a PET scan, so we could really tell what was going on in there – Scott’s first one. There was a good bit of anxiety about it (“what if I light up like a Christmas tree?”), but we needed the info to figure things out.

[A word on PET scans - Instead of the normal CT scans which have shown where things are to date, becuase they show structures and you can tell what is there (and what is not supposed to be there), a PET scan works differently. How it was explained to me is this - PET scans show degrees of brightness based on a radioactive sugar isotope that you are given to drink. The tumors take up the sugar rapidly, greedy bastards that they are, and so, when reviewing the scan, they show up brightly. When overlayed with a concurrent CT scan, you can tell what is shining brightly where - and where your trouble spots are.]

As you can imagine, in the midst of all of this, our heads are spinning, trying to understand what this all means and with a distinctly different feeling than we have had before, given the lack of a plan. We reached out to the docs at Columbia and Hopkins to try to get their thoughts. (actually on our way to Hopkins right now).

This past Tuesday (two days ago), we sat down to talk to our onco about the PET scan, after having gotten the preview call on Saturday (didn’t I tell you we have the best oncologist in the world??).

The good news, no…great news, is that Scott did not light up like a Christmas tree. The lymph nodes in the chest and the nodule in the lung that had been identified before are quiet, and there was only one spot in the pancreas that lit up. (wait, didn’t we fry that already?)

The more challenging news? Scott’s liver did look like the bush outside our house…lots of twinkling there.

At this point, having exhausted the generally available options (and some not generally available options), we find ourselves definitively at the end of the paved road. We’ve got to make our own way from here and the path isn’t clear, so we’re going to have to figure out where to go. We have to continue with some type of systemic treatment, to treat what is a systemic disease, but we also need to find a way to deal with the mets in the liver, because…no liver, no Scott. So, the team is mobilizing, the docs are conferring and we’re going to figure out what is next. And quickly, too.

The options before us are as follows:

1. Clinical trial or other experimental treatment – Don’t know what yet, but working through the options. The options are narrowed because of Scott’s previous treatments, so we may just be looking at Phase 1 options. More to come…

2. Liver-directed therapy – With the cancer largely confined to the liver at this point, liver-directed therapy may be a viable option once again. There are several options, and we will work through which ones, if any, Scott is a good candidate for, and what risks may be palatable. Looking at evaluating SIR spheres first (radiation from the inside) and following up with liver-specific chemo – a chemo-embolization, without too much embolization. Again, this is way early, but these are some of the thoughts floating around.

Where will we end up? I have no idea – hopefully some combination of the two, that continues to treat him systemically, even on an experimental basis, while addressing the liver issues. I have to say, though, I am thankful to have the molecular profiling done in Arizona from the tissue samples taken during the ablation to try to guide the choices that are made now. It helps tremendously that we know more about what we are dealing with.

And that’s where things stand right now, today, this moment. We’ve got our meeting with the Hopkins doc tomorrow and then back to Charlotte to try to piece it all together. A pre-Christmas stent replacement is scheduled for Tuesday, so we don’t have to throw that madness into the mix.

Scott continues his effort to blaze trails for pancreatic cancer patients, especially the young ones. And we keep trying to figure out what piece(s) of the puzzle may work. Me, I’m just along for the ride, trying to hold it all together.

And you all, I hope you keep praying BIG!

Giving Thanks – Year 2

Marisa says: I’m not thankful for PC. Let’s get that straight off the bat. We were doing just fine, chugging through our lives before PC decided to derail the train – or at least cause it to switch tracks. However, we have been so blessed during this journey, and I recognize that and am thankful for each of those blessings, not only today, but every day.

At the moment, we are winding down the last couple days of a much needed vacay – a chance to get away and spend some time with each other (or more importantly, a chance for me to not have to cook or do dishes).

As usual, getting away is always an adventure in itself. Even with the new stent, Scott’s liver function tests have been all over the map. He’s been back and forth between absolutely miserable and just crappy, as the numbers go up and down, but the most recent tests from last week were better than they had been (actually great), so we forged ahead on our trip which was going uneventfully until Tuesday, when Scott’s right leg began to swell. (sigh)

Of course, my head always goes to the extremes – that we’re dealing with a DVT (blood clot), given the extended travel – and starts working through the logistics. Did I mention that we are on a ship??? So, we’ve got no ultrasound on board with which to diagnose a DVT, three hours before we leave the current port (St. Thomas) and a clear understanding that the ship WILL leave us if we are not back on board in time. We took our chances and raced off to the local ER (with the kids, Scott’s meds and a change of clothes), figuring that we would work on Plan B.

At the ER, we learned (in rapid succession) that:

1. There was no chance we were making it back to the ship,
2. There was no one there to work the ultrasound, that the person we needed was on call and would take a couple hours to get there – which would mean we would miss the ship,
3. If the ultrasound showed a DVT, while the treatment would be fairly straightforward, they may not have the necessary medicine, and finding it would take a couple of hours – which would mean that we would miss the ship…

You get the drift???

Well, we got lucky. Call it fate, call it the hand of God, there happened to be a pregnant woman there before us who needed an ultrasound…if only she gets done quickly enough…if only it is negative…if only…

Long story short, we made it back to the ship with about 30 minutes to spare thanks to everything lining up and the hard work of the great staff at the Roy Schneider Medical Center, especially Jodie and Dr. (insert name here – I can’t find it right now). (Perhaps it helped that my dad was roommates with the guy that the hospital is named for…Scott made sure everyone knew. Thought that was important. Me, I think that every desperate, frantic cruise ship passenger about to miss the boat would be treated similarly. Dunno.)

The ultrasound was negative, so he is trying to keep the leg elevated, taking some aspirin and applying warm compresses. Fortunately the Packers are on right now, so elevation and rest are fairly easy to come by. We’ll keep an eye on it and tackle the rest next week.

So that gets me back to where I started, giving thanks.

I am thankful for the resilience of children, for two boys whose lives have been turned upside down, yet they continue to thrive and provide us with unending joy.

I am thankful for the school and community who help to nurture and sustain them, for people who let them be kids and enjoy as much of their childhood as possible.

I am thankful for friends and for neighbors who have become friends, for gluten free cookies or flowers or blankets that show up unexpectedly or an offer to watch football, and for those who reach out and help even though they aren’t sure what to do to be helpful.

I am thankful for those who answer the phone when it rings in the middle of the night, who drop everything when things get crazy to lend a hand, or who just send us a text and reach out to let us know that they are there.

I am thankful for the best medical team that we could hope for – for a set of doctors, nurses and other medical staff, as well as our team at the pharmacy who keep us going, answer all of my questions and treat us with caring and compassion, even when I am calling them for the third time in a week. They truly have kept us going!

I am thankful for each of you who read our blog, those who share our story, especially those who leave a comment to encourage us in this journey. I am especially thankful for the friendship and support of those who are on this or a similar road with us. I wish you weren’t here. I wish we weren’t here, but your support has been and remains invaluable.

Finally, I am thankful for time. Always time. While PC itself sucks, it does make you aware of every moment, every decision. It teaches you to cherish, to enjoy, to not take things for granted. And once you are past the initial shock and awe, you learn to live, really live in and for the here and now. Perhaps that is the gift of this journey for all of us – to learn that lesson, albeit hopefully not as keenly as we do.

And so today, Scott and I wish you and your family a Happy Thanksgiving! Peace and love.

P.S. I am thankful for all of your prayers as well. Keep ‘em coming! Keep praying BIG!

Just a quickie…

Marisa says: Since I’m trying to do a better job of keeping you up to speed, here is where things currently are. No bells and whistles…just the facts, or at least what we know of them.

Neck is behaving. Still doing pt, but is not experiencing the pain he was before.
Had chemo on Tuesday. Just Abraxane. Not sure where we are in the cycle right now. I think we started a new cycle after the recent stent vacation. Weight is good. But here’s the problem, he isn’t feeling great. Tired. Pain in abdomen. Says he feels like he never really bounced back from the clogged stent issues. (I disagree, I think he bounced back and is not feeling good now.) And, to top it off, we got a call yesterday that the liver enzymes are elevated once again. Don’t know why yet. They ran new labs today to see whether there is a trend and will take it from there. In the meantime, he’s eating a bland diet to give the radiation ulcer a rest and working through the nausea and other side effects from this week’s treatment.

Me…I’m taking the day off from work tomorrow to spend some quality time with him, as things have been pretty hectic around here lately and he’s been on his own a lot. The kids have school. (shh…don’t tell)

That’s it for now.

Where we are now

(exhale)

Marisa says: So here we are at the end of October. For Halloween, I’ll take the treats, no tricks, please. And we’ve got a treat to share with you as well. A scan earlier this month showed a great response to the lymph nodes in Scott’s chest. Yes, lymph nodes, I said, as has been confirmed (and a nodule in his lung, as well), but given the size of the response, it looks like the Abraxane is making an impact. Two rounds down of weekly treatment for three weeks with one week off, and now we are into the third round. We had scheduled a stent replacement for the end of the month (yesterday, actually), just shy of 12 weeks, but somehow, the fates felt we needed a bit more excitement in our lives, as his liver enzymes started rising last week. Actually, based on the symptoms, we initially thought that the CDiff had returned, but the blood work pointed to the stent as the prime culprit for Scott’s symptoms. (For once I was actually happy to hear it was the stent, because another month of vancomycin was not going to be fun.) The stent was swapped out on Monday, without event, and Scott has had a couple days to rest up and recover from that, and even make it to Max’s last baseball game of the season last night. And now, we’ve got the next stent replacement scheduled to happen in 10 weeks, instead of 12, as we had been doing.

Where are the rest of things? Well, we’re headed to see the physiatrist this morning. The second injection in C7 seems to have helped, along with physical therapy and the addition of gabapentin. Scott spent a couple weeks on his back icing his neck and in a lot of pain – but seems to be on the mend. (fingers crossed) His weight is good, a little dip with the stent issues, but we’ll erase that in no time. The Abraxane is a real contrast from the Folfirinox. With the Folfirinox, he felt really bad the first week, but worked his way out of it during the second week of the cycle. With the Abraxane, he is much more alert after treatment, but feels pretty crappy all week before starting again the next week – his stomach just doesn’t feel good. He is also experiencing a good deal of joint pain from the Abraxane that kicks in a couple days after treatment. And his hair…he is losing hair far more rapidly than he has with any other treatment, but not uniformly. Top eyelashes are okay, bottom ones have started leaving. Head is okay still, but chin beard is woefully sparse.

So that’s where we are…every day we’re shuffling, shuffling…

Keep praying BIG!

Pain in the Neck!

Marisa says: Yikes! We missed the whole month of September! My apologies, but by now, you know what that means. And here we are, the beginning of October…and I need to catch you up.

At the end of August, we had a wedding in Arizona (Congrats Chris and Rama!) and used the visit to take the boys to the Grand Canyon. The first trip for all of us! What a trip! Too short, but so glad we made the effort. My favorite part was getting up at 3:30am to go see the stars in the dark night sky. A perfect night for it – no moon, no clouds. You could see the satellites, shooting stars and the edge of the Milky Way. Absolutely awe inspiring.

Once we got back, Scott started complaining about pain in his neck and left arm – and numbness down his left arm. Fortunately (or unfortunately), we are not strangers to such issues. Scott had the vertebrae in his neck (C3-5) fused many years ago, and it has acted up from time to time. There were a few concerns about this being cancer-related, but the MRI showed that the spine is clear. It is his disc that is bulging and compressing the nerves going to his left arm. Sadly, there isn’t an easy fix. They’ve done one block already, which gave Scott some relief for a few days, and we have an appointment this week to see what the next steps are. My frustration is that the neck issue is fairly debilitating – he’s on his back trying to limit movement and treating with ice as much as possible. Just one thing after the other, when he should be due a break one of these days. Which brings us to the next issue…

C-Diff has also decided to rear it’s head during all of this. Given the symptoms, our thoughts immediately went to the stent, but after labs came back normal, when so much else did not seem to be that way, we ended up with this diagnosis. We’re on the second round of antibiotics, which hopefully will clear it up (as it surely has cleared Scott out). The thought is that this may have been caused by all of the antibiotics from earlier this year. (Funny how they give antibiotics to clear up problems caused by antibiotics…). The hope is that this is the easier-to-treat kind of C-Diff, so we can be done after this round. Scott is definitely making sure to eat and drink lots of pre- and probiotics to try to replenish as many of the good bacteria as possible. In fact, it wasn’t until after he stopped regularly drinking kombucha that this started. Hmm…

During all of this, Scott has also been able to get to a couple football games. He was a guest of the football team at Wheaton College, where he experienced welcoming and compassion that one would rarely see or experience. My sincere thanks to Coach Len and the rest of the Wheaton organization for adopting and continuing to look out for Scott.

Scott was also able to head to his alma mater, Albion College, for homecoming, 20th reunion, and dedication of the football field to his former football coach, Pete Schmidt. He was able to see people who he hadn’t seen in years. Even though he wasn’t able to do everything he wanted to, Lance and the folks at Albion made sure that he was well taken care of.

And that’s not to mention the Panthers/Packers game here in Charlotte, which fortunately the Packers cooperated and won. Go Pack!

So all of this and only one mention of the c word so far…

Today was the third week of the second Abraxane cycle. (The full cycle being once a week for three weeks and then a week off.) So far, the side effects have been much less than with Folfirinox – no comparison. Scott is still battling nausea and has actually been throwing up, but we’re not sure to what extent that is attributable to the chemo or the C Diff. Fortunately, weight has been relatively stable after the initial drop from C Diff. (Lots of cakes and cookies…and steak!) As you can tell from the schedule, he has been able to get up and around, although not as much as he would be able to without the neck issues. This past month, cancer has definitely taken a back seat to other issues…imagine that! Hopefully it will stay that way. While Scott may not feel great a lot, he definitely is trying to take advantage of the time he feels good.

And for those wondering, the boys are settled in school and doing well. School provides a great deal of consistency for them (and gets them out of the house, dare I say?). We’ve got two great teachers and both boys are happy and healthy. They bring us joy.

Me, some days (often) I feel like I’m just one crisis away from a breakdown, but I don’t have time for that, so I just keep chugging along, always thankful for the help from the village around us.

As always, I’ll keep you posted. Just keep praying BIG!

The Trap

Scott says: Time is a mean mouse trap. Mean because its the kind of mouse trap that leaves you broken, but alive. Flipping and flopping, trying to figure your way free. It traps us all sooner or later, but when your time is defined for you (say by a diagnosis that leaves you much less time than you thought you had), the boundaries of the trap come into much sharper focus. Painfully sharp focus. And even though you know the trap is there, you stick your head right in every time because time is so easily taken for granted. Nothing flows so freely past, and the more that flows past, the easier it is for still more to get by without being noticed or appreciated or observed. It slips right by and before you know it you have lost days, weeks, months, and years. Lifetimes.

I had a particularly nasty time trap experience back in December. We were traveling somewhere and staying in a hotel. As we were headed through the lobby, I saw a news paper with a little scruffy guy on the lower corner of the front page-The Lorax. Not only was this one of my favorite books, but I’d read it to the boys hundreds of times. I couldn’t wait to see what had the Lorax in the news. Once we got to the room, I jumped on the bed, turned right to the article and I was thrilled to learn that The Lorax was being made into a big movie with Danny DeVito voicing the Lorax himself. How great would it be to get to see this movie with my boys? But when I got to the end of the article, the trap snapped shut. The movie wasn’t expected out till summer of 2012. 2012 might as well have been a million years off. 18 months was 3 times my life expectancy.

I cried for a while, a good while, right there on the bed, hidden behind a newspaper I was now only pretending to read. But I rode it out (didn’t hurt that we were in the middle of a great vacation). Dug my way back out of the closed trap and pushed on. That’s what you have to do to keep living, fight your way forward toward the life your prognosis says you don’t get to have.

Time is the trap. Your future is the cheese. Any time you reach for the cheese you risk the trap closing on you. You have to live in the present, but again, it is so easy to get dragged into the future. Only to feel the SNAP of the the trap closing again. It might be the reminder from a doctor that you have already lived past your expiration date. Could be an innocent comment from a friend that just wants to make plans to visit. Or it could be the oncologist coming in and telling you that the chemo that had worked well enough to allow you to take time for granted has stopped working. SNAP!

I guess in some ways the trap is a good thing. Maybe the SNAP is the reminder that I’m still alive. The fact that I can be caught in it again means that I have lived long enough to forget about the last time I got caught in it. It means that I’m living long enough to get over bad scan results and failed chemo combinations. It certainly makes life tougher in some respects, but a tough life with Marisa, Cole, and Max is way better than anything without them.

And who knows? Summer of 2012 is only 9 months or so away. Maybe we will get to see the Lorax together. SNAP!

Pray Big!

Scott

That darn stent!

Marisa says: Scott is working on a post. I promise. That being said, he was supposed to deliver this news himself, and instead, I’ve jumped in to try to keep you up to date. Two weeks ago, we were in Richmond to pick up Cole after his week at Camp Brown. (He had such a good time with his buddy!) After getting there, Scott started complaining of some discomfort in his abdomen. By the time we got home on Saturday, he had a low grade fever. When we made it into the ER on Sunday (after discussions with the triage nurse), his temp was already 102.7. Fortunately, this is a drill we know pretty well. We were lucky that the gastro was back in town and able to swap out the stent on Monday. Why Scott only gets three months out of these, when they should last a lot longer, I don’t know. But, we are supposed to be able to schedule the next stent replacement, to try to avoid the emergency routine.

While Scott was in the hospital, the docs did a CT to see how things looked. Based on the scan, it looks like the Folfirinox is not working this time around. It had been pretty difficult for Scott this time – taking longer for him to bounce back from each treatment and feel better. Some of that was probably due to the recovery from pneumonia (and the liver healing), but difficult nonetheless.

In any event, it was time to move on. From the testing that had been done at the time of the ablation, we knew that the tumors were Sparc+, which made Abraxane a viable next step. Abraxane, from what we are told, is a super-expensive drug, primarily used to treat breast cancer, but a specific gene mutation in Sparc+ pancreatic cancer cells makes them more likely to respond to this type of chemo. So, we will see. Scott had his first treatment on Thursday. It lasted around 90 min from start to finish, unlike 8+ hours, with the pump on for an additional 46, for the Folfirinox. So far, he’s tired, but not to the level experienced with Folfirinox, and the nausea seems to be more manageable, too. The plan is for Scott to have treatment once a week for three weeks, with the fourth week off.

That’s where things stand. We’re hopeful that the Abraxane will be well tolerated and allow Scott to be up and about more. We’ll keep you posted.