Hey friends, as you know, I haven’t been here in a long time. This blog was for a season, and that season ended, but life goes on.
I’ve started blogging again. If you’re interested, the blog is: Life, Unexpectedly. I don’t know how this new story will develop. We’ll all have to wait and see.
Today is the National Call-In day for the Pancreatic Cancer Action Network. If you are so inclined, click on the link to get information on how to contact your members of Congress and encourage them to help get the Pancreatic Cancer Research & Education Act moving.
It took me less than 5 minutes.
Here’s the detail from PanCan:
National Call-In
Tuesday, June 26, 2012 – Today is the Day!
The National Call-In is an opportunity for all Pancreatic Cancer Action Network supporters across the country to join together with one voice to tell Congress: It’s time to pass the Pancreatic Cancer Research & Education Act so that researchers and scientists have the tools they need to make true progress in fighting the disease.
Your calls will reinforce the in-person meetings that nearly 700 advocates are having today on Capitol Hill as part of Advocacy Day 2012. During the Call-In, you will be asking your members of Congress to sign a Senate or House letter which will help get the bill moving to a vote and to the president’s desk by the end of the year.
And the link:
The boys and I have made it to Michigan and are hoping to see some of you on the football field at Albion later today. Two things:
1. In case of rain, we will be in the Dow Recreation and Wellness Center adjacent to the field.
2. As always, it’s a casual event. Scott was a casual guy. While he looked great in a suit, he didn’t always want to wear them, so come as you are!
See you at 1 pm!
Yesterday we gathered in Freedom Park to celebrate Scott’s life. It was an absolutely perfect day! We were so thankful that so many of our friends and family were able to join us. I’ll share more about it later, but wanted to get a quick post up with the details for the Michigan service. It will be held this Saturday, June 2, 2012 at 1:00pm on the football field at Albion College, Albion, MI.
More to come…
O Captain! My Captain!
By Walt Whitman
O Captain! my Captain! our fearful trip is done,
The ship has weather’d every rack, the prize we sought is won,
The port is near, the bells I hear, the people all exulting,
While follow eyes the steady keel, the vessel grim and daring;
But O heart! heart! heart!
O the bleeding drops of red,
Where on the deck my Captain lies,
Fallen cold and dead.
O Captain! my Captain! rise up and hear the bells;
Rise up—for you the flag is flung—for you the bugle trills,
For you bouquets and ribbon’d wreaths—for you the shores a-crowding,
For you they call, the swaying mass, their eager faces turning;
Here Captain! dear father!
The arm beneath your head!
It is some dream that on the deck,
You’ve fallen cold and dead.
My Captain does not answer, his lips are pale and still,
My father does not feel my arm, he has no pulse nor will,
The ship is anchor’d safe and sound, its voyage closed and done,
From fearful trip the victor ship comes in with object won;
Exult O shores, and ring O bells!
But I with mournful tread,
Walk the deck my Captain lies,
Fallen cold and dead.
Rest in peace, my love. Rest in peace.
Marisa says: I have started a project to collect pictures of Scott at various stages of his life for the boys. If you have some that you want to share, please email them to:
scottammonspics@gmail.com
Also, if you want to share stories about Scott, that would be great to send to that email address as well.
Note – I’m also looking for game film from college. If you have that, please let me know, too.
Thank you!
Marisa says: With the last couple weeks behind us, I find that I am finally at a spot where I can post an update. Frankly, it’s been a bit hectic around here, but not in a bad way. And a new routine is slowly getting established.
Scott finished the round of radiation, in an attempt to make his back more comfortable. While the initial results were mixed, with some additional time behind us, it seems to have helped. Actually, the radiation fatigue ended up being a bigger issue, especially piled onto the cancer fatigue, but it seems that Scott is finally beyond that…at least the first one.
We are now working with a hospice team. What great people! While this may seem like bad news to some, hospice is actually a wonderful thing, as their goal is to help you live your life in the way that you want. I know this has been a hard thing for Scott to get his head around, as he is a fighter and wants to keep fighting. Working with the hospice team doesn’t preclude our ability to pursue a new treatment in the future, if one were to come up. Since Scott is not currently able to pursue oncological treatment, it provides us with good medical support, pain management and help for navigating the current waters. It means we are working to maximize the quality of time over quantity. And as I have told him, it means that we are still fighting, just in a different way.
Scott had his first paracentesis (auto-correct says “parade thesis”) recently. This is where his abdomen is tapped to drain fluid that has accumulated in there (ascites). They drained 1.5 liters, which made him more comfortable. We will monitor the level and may need to do this again, depending on whether meds can keep up with the ascites or not.
His weight is relatively stable, fluid notwithstanding, which is a good thing. Eating is a challenge, as his appetite is rather depressed. He tends to eat at least one small meal a day, and I keep a variety of snacks around for other times. Fortunately, friends and family have kept him well supplied in gluten free treats, especially not one but two gluten free 7-Up cakes. We have also had a steady stream of visitors, which is now winding down. Their presence has allowed me to get to the office from time to time, and ensure that Scott has company in case he needs anything. I am very thankful for those who have made and continue to make time for Scott, be it for walks in the park, hanging out watching tv or for dinner or conversation with friends. It would be very easy for people to pull away, but instead, our village has gripped us even tighter.
The boys continue to thrive, even in the midst of all of this. We continue to be honest with them about where things are, so they too can navigate the waters ahead.
So that’s where it is right now. I’ve got more to say, but will save the rest for another time. I want to get this update out.
Keep those prayers coming! They are always much appreciated.
Marisa says: Yes, I know you’ve been wondering. At long last, we were able to see The Lorax. Thanks to Amy for getting us tickets for the preview screening and a box of swag, to Greg and the folks at Universal who sent t-shirts and fun stuff for the kids (mustaches!), and to Jon who sent the boys 4 ft Lorax fatheads. We loved the movie and were so thrilled to get to see it. It meant a lot to reach this milestone.
Unfortunately, in the last week, we have learned that we need to set our sights much closer for the next milestone. Before going to Boston, Scott had a PET scan. Upon our return, we learned that the scan showed two new mets, one in L2 in his spine and one in his left hip and overall progression of the cancer, consistent with the fact that he has not been on chemo while we evaluate the trials and look for options. We met with the radiation oncologist last Monday and started treatment on Tuesday, with the idea of addressing the back pain Scott has been experiencing. Also on Tuesday, Scott went for his regularly scheduled stent change. After the procedure, the doctor told me that it was the most difficult procedure he had performed…that Scott’s insides had changed dramatically since the last procedure in December, or more concerning, even since the stomach surgery a month ago.
On Wednesday, we saw the oncologist who reviewed all the recent information with us and told Scott that, given his performance status, he could not have chemo that day. At this point, we are evaluating whether Scott’s status will improve so that he can have chemo again.
This cancer, this nasty, thieving cancer. It has taken advantage of the chemo break to take off in a way it never has before, and now we may be at the point where we cannot beat it back. Almost two years since diagnosis and here we are, changing the fight and evaluating whether to turn our energies to comfort and peace.
But, Boston (Dana Farber) went really well. They had some good ideas to offer Scott and others who have moved beyond the standard PC treatments. However, it doesn’t look like we will be availing ourselves of those at this time. At present, Scott is in bed for most of the day and isn’t eating much. His weight has dropped quite a bit in the last month, whether from the surgery and it’s aftermath or the cancer, it doesn’t matter. The weight is lost and it may not come back.
Instead, we are working to control pain right now, trying to make him more comfortable. Trying to walk in the park once a day, to enjoy the sunshine, the birds chirping and the flowers blooming, as we transition into Spring. Hoping to spend time together as a family, and still finding fun things to do…when we can, when he can. Knowing his strength, Scott may rally yet. These are hard decisions that no one wants to have to make. Hard, hard decisions.
Pray for time. Pray for peace. Pray for a clear road forward. Pray BIG.
Marisa says: Thanks to all for the prayers, well wishes, thoughts and good vibes today. I swear I can feel them surrounding us. Surgery went well and Scott is now settled in his room. I would say comfortably, but we are still working to get on top of the pain. However, we will get there. He’s got a gastric tube for today to ensure his stomach stays empty to allow the incision to heal. Hopefully it will come out tomorrow.
Surprisingly, there was no lopping involved! It was explained that the surgeon made a slit in the jejunum and hooked it directly up to the stomach, without detaching the duodenum. So, now the food has a new route and obstruction will no longer be an issue. He also took a look around and saw no evidence of disease in the peritoneum (good!) and lopped off (okay — I guess there was a little bit of lopping) a tumor on his liver “since he was in there.” Very little evidence of metastatic disease in the abdominal cavity, which is a very good thing.
Scott is surprisingly alert given that we had to be up at 4:15am. Just ice chips today. Going for sips of clears tomorrow.
Now to get the healing done so we can work on getting into a trial…here we go!
And as for those BIG prayers…keep ’em coming!
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
My Crappy Pancreas 