Pancreatic Cancer Advocacy Day

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:

Pancreatic Cancer Advocacy Day

Update for Michigan

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!

Details for Michigan

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…

T+3

Two whole days have passed now, and now we’re in the third. The hospital bed has been removed from our room. The arrangements are being made for Monday’s memorial service. There are lots and lots of things to do. I guess that is a good thing…keeping busy, keeping distracted on details, rather than on the gaping hole in my chest. I am sad, profoundly so. I feel his loss keenly. I will always miss him. But there are so many other emotions and feelings swirling around, too. I feel peace that he no longer has to fight, relief that he is no longer in pain, and even anticipation for what is yet to come for the boys and me as we forge ahead in this new and different world. The weight of the last two years is peeling away and I don’t know what will come next.

The boys are doing well! They, too, are sad, but children are resilient! Amazingly so! Thankfully, they were with friends on Tuesday evening after school and played until bedtime. Surprisingly, they didn’t ask to call or check in, which is their normal routine when away. They had already given Scott hugs and kisses when they saw him on Monday evening, and knew that based on Scott’s condition at that time, that he could pass away at any time. Death is not a pretty thing, and they needed to remember their dad how he was, not how he looked in his final hours.

On Wednesday morning, I was there to meet the boys. Max, not surprised to see me, asked how dad was doing, and I let them know that their father was gone. There were tears and questions, and more tears. Lots of love and hugs. And then slowly, there was a facing of the day ahead. They wanted to go to school, albeit a bit late, and they began to start their day.

You see, they grasped from the beginning what us adults take a long time to figure out (and some never do). Life is about living! Every day! Every moment! The best way to honor someone who has passed is to live your life. As I said to someone yesterday, Scott would kick my butt, if I was doing anything but that. This is what we have tried to do in the face of the challenges of the last two years. This is what the boys and I will continue to do, as we figure out what it means to be a family of three, instead of four.

So, they went to school. They were a bit nervous – how would people act, what would people say. But, knowing the amazingly supportive environment they are in, I knew it would be okay. Cole didn’t want to miss his Gettysburg Address test or the first day of the Civil War Museum, where he presented his display and shared his research on the Massachusetts 54th. And Max didn’t want to miss his class party. I picked them up a bit early and we went home and hung out. Lots of different questions, many without answers. We played. We laughed. We ate dinner, dad’s favorite Mac and cheese (Smac, how we love you!), and for the first time in a while, I could sit and eat dinner and focus on the kids, instead of running back and forth between them and Scott. They both, summed it up similarly, that while this was a sad day, it was an okay day.

I know there will be many more sad days. I know that the loss that we so keenly feel will continue to bubble up and out in different ways in the days, weeks, months and even years ahead, and I appreciate the wisdom and insight of those that have gone on this path before us. I know that this will indelibly mark all of us – but I have faith that the family the four of us created together has set our compass in the right direction.

People do this. People get through this. People lose spouses. Children lose parents. We are now a part of a different club. And whether or not we want to be members, we are, and we will figure this out together.

And I guess I still feel that the greatest sense I have is the feeling that I have been blessed. Blessed to have had the opportunity to meet and get to know such an amazing soul. Blessed to have married him and had two wonderful children. Blessed to share so many years and experiences as we made our way through life. Blessed to have had two years to share the PC part of the road by his side. Blessed to care for him in his final days. And blessed to be with him as his soul moved on.

I thank all of you who have been and continue to be part of our journey, standing by our sides, whether right next to us or from far away.

So now, what comes next? We’re going to celebrate Scott’s life here in Charlotte on Monday, May 28, Memorial Day at 11am. We’ll gather in Freedom Park on the island where the band shell is to share stories and memories, to listen to music, to pray, to laugh, to cry, to remember. I’m not dressing up – I hope you don’t either. Scott was a casual guy and he’d hate to think of anyone sitting out roasting in the sun in a suit or tie on his behalf. Actually, he probably would a kick out of it it and laugh at you.

Since so many of Scott’s family and friends are in Michigan, the boys and I will also be heading there to celebrate Scott’s life in the coming weeks. I will let you know those details as soon as I have them.

In lieu of flowers, or for those who want to do something in Scott’s memory, I offer you three choices for donations, two meaningful and altruistic and one meaningful, but entirely self-serving:

Pancreatic Cancer Action Network

These folks are a great support for families facing PC. Shortly after Scott’s diagnosis, we were in touch with them and they provided a great deal of support throughout our journey.

Hospice and Palliative Care Charlotte Region

What can I say – these people are angels here on Earth. Scott’s nurse, Amy, was absolutely amazing. I couldn’t have asked for a better person to walk the final steps of this road with. Although, they desperately need to give the nurses cell phones with keyboards so they can text like the rest of us! Really! How the nurses manage to spell out names of meds and detailed instructions with a numerical keypad, I do not know.

Providence Day School
5600 Sardis Road, Charlotte, NC 28270

Ah, the boys’ school. A large part of our village and a huge source of consistency and routine for the boys. And as we move forward, I expect it will remain so. If you want to send them a check and put Max and Cole’s name on the memo line, feel free to do so. There are still many years of tuition ahead!

Peace and love to all of you. The outpouring of support this week has meant so much to me and will mean a lot to the boys as they get older and discover this blog.

And while prayers, good vibes, well wishes and other support are always appreciated and welcome, we know we’ve now got Scott looking out for us too and that’s a BIG amount of love.

O Captain! My Captain!

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.

Call for Pictures

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!

The view from here

Marisa says: It seems I am always writing a post in my head, especially these days, when I haven’t posted an update in so long. But, as you know, I haven’t. So, I am trying to take advantage of a few minutes sitting in one place to let you know where things are.

In the “when life gives you lemons, learn to make a margarita” category, we decided to take the boys out of school for a week to go on a cruise right after Easter. Generic Caribbean, I called it – lots of sunshine, no dishes to wash. Given the transition to hospice, the uncertainty ahead as well as the need to spend some quality time as a family, we thought it was a good idea. Actually, there was much discussion about how we would manage it, what to do if a health care crisis arose, and a consideration of most scenarios, but with the endorsement of the hospice folks, we decided to go for it. Got the go ahead on a Thursday and found a ship that sailed the next Tuesday. How’s that for lead time!

The cruise was great! We didn’t even get off the boat. Scott found a balance where he would spend one day doing something with us and then rest a day, and with a great kids program, the kids had a good time, whether or not they were with us. I honestly didn’t realize how much we needed the time together, but in retrospect, when you think about it, the boys have been busy with school and other activities, and although I am working from home quite a bit these days, during the day I am working, and not always focused on Scott. So, the trip gave us some solid family time to talk, laugh, spend time together and recenter our family. I’m glad we were able to do it (and thankful that the time away was medically uneventful).

Since returning, we’ve continued to work with the hospice team, especially our fantastic nurse. She comes by a couple times a week to check on Scott and manage the medical aspects of his care. She is a resource for me, as well, helping me sort through things and understand where we are and what is ahead.

Since the first paracentesis, Scott has had two more. Both times they drained three liters from his abdomen. It is refilling faster than it initially did, too. They have talked about putting in a catheter that would allow us to drain the fluid at home when needed and keep Scott more comfortable, but he just doesn’t want it. At this point, he would rather go in to the hospital to have it drained every week or two, than to have something sticking out of him. And while I may not agree and worry about the logistics as he loses his strength, it is his decision and I do respect it.

We also spent a week in residence at the hospice house to support a change in medication. Initially we were supposed to be there three or four days, which then turned into a week. Scott was also not thrilled with that, but dutifully soldiered through, and is now a lot more comfortable, having gone through the transition.

The other transition continues as well. I have no idea what the number on the scale is, and it really isn’t relevant, but I see the continued loss of weight and overall body mass. He sleeps most of the day now, trying to save what energy he has for an hour or so in the evening when the boys are home, although he did make it to see the Avengers last weekend to celebrate Cole’s birthday. His appetite comes and goes, mostly snacks and a few small meals, so as not to cross the line that turns the often present nausea into vomiting. He’s rediscovered a love for jello.

One of the hardest parts for Scott over the past couple weeks has been the loss of his ability to communicate, both through the gradual weakening of his voice and the loss of his ability to text, as that has been his primary means of communication. His fingers aren’t steady, even after adding a physical keyboard, his voice isn’t strong enough for dictation and his mind is not always clear. It is hard that his world is shrinking at a time when he so desperately wants to stay connected. We have adjusted the meds to ensure they are not the cause of the confusion. It just appears to be part of the process, as toxins begin to accumulate in his system, and unfortunately, where we are right now, Scott knows he isn’t always clear.

But, as always, there are bright spots, visits from friends that brighten his day or stolen moments with the boys. He frequently asks when he is going to feel better, when he is going to have more energy so he can be more active. It breaks my heart to hear that, and I tell him that we will just have to make the most of where we are now, and will continue to try to do so. There’s nothing that will make this all better. We just continue with the journey, thankful to still be on the road.

And while we’re on that road, please keep those BIG prayers coming!

A New Path

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.

Unless…

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.

Surgery Update

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!