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!
Thinking of you all today with lots of love. Your blog is remarkable and inspiring – you both write so beautifully about the crazy reality foisted upon your family. Your sharing is a gift – thank you.
Go Scott! You are amazing and strong and wonderful. You are in our thoughts daily.
Happy Thankgiving, and here’s to one more day after one more day after one more day…..
Love to you all,
Alicia
Comment by Alicia Zambelli — November 24, 2011 @ 4:42 pm |
Ayars and I wish you, Scott, Cole and Max the most blessed Thanksgiving and the gift of hope for Christmas and the new year. I continue to pray for you all each day.
Comment by Barbara Lore — November 24, 2011 @ 4:48 pm |
A blessed and HAPPY THANKSGIVING to you, Scott and the boys. You all are always in my prayers. Love, Jeanette Garr
Comment by Jeanette Garr — November 24, 2011 @ 5:08 pm |
Couldn’t agree more – the well of love and determination others bring to a cancer battle is the ying to the yang of the horror of cancer. A great day to talk about those great things people do! I’ll add you two and the boys, who lead the way in how to live with love and fight a good fight at the same time.
Comment by Sue — November 24, 2011 @ 5:48 pm |
Happy Turkey Day! Glad you guys made it back to the ship…Counting you guys as friends is one of the things that I am thankful for today (and every day). Scott, your vision of the future remains firmly implanted in my mind. Porch. You.
Comment by James M. — November 24, 2011 @ 6:31 pm |
Happy Thanksgiving to you and your family. Pray for you daily and praying for Scott’s vision. God Bless, Judi Cecich
Comment by Judi Cecich — November 24, 2011 @ 9:21 pm |
Marisa & Scott…wishing you and your gang a very Happy Thanksgiving and a Merry Christmas.
–Roger & Barrett
Comment by Roger & Barrett — November 26, 2011 @ 12:25 am |
Happy Thanksgiving Ammons Family! We think of you often and Pray BIG for you.
Much Love,
E.J. , Nikki, & Tre’ Pasteur
Comment by E.J. & Nikki Pasteur — November 26, 2011 @ 8:46 pm |
Marissa, Your posts as well as Scott’s are uplifting and inspiring. They serve to remind us how precious each and every day really are. I continually lift up you and Scott in prayer to a mighty God who is well aware of every aspect of our lives. Cheryl and I send our love.
God Bless,
Uncle Bill
Comment by Bill Bertram — November 26, 2011 @ 11:20 pm |
Happy Belated Thanksgiving. May the Christmas season be filled with many good days, peace and blessings from Iowa. Dianne & Larry
Comment by Dianne — November 27, 2011 @ 11:28 pm |
I am happy to hear how you thankful you are, I am too, but I don’t have as much as hope, as our pancreatic cancer was diagnosed late. He is on folfirnox, and surviving, but it’s tough when the diagnosis differs and there is little hope for a stent. The cancer on the liver is smaller, but the size of the pancreatic tumor and bile duct has not changed. My children are older and in college and we are not able to travel right now. I am glad you are enjoying your time together. What do you know about cancer treatment centers? I have a bunch of arm chair quarter backs with different opinions on treatment, but because there is nutrition and alternative healing, I am hoping that they could help cure this diagnosis. Please let me know what you think about the cancer treatment centers.
Comment by Carole — November 29, 2011 @ 12:51 am |
Dear Carole…My name is Jane and I follow Marissa & Scott’s blog. We live in MI and my husband was diagnosed with Stage IV metastatic pancreatic cancer in July 2010. First, he went through 12 treatments of folfirinox, which was very difficult and took him to the brink, but it took the tumors down (9 in liver, multiple lung and abdomen, and, of course, the one in the tail of the pancreas, to only 2 small liver tumors and held them stable for a while. He was then on 5FU and Leucavorin from Feb. through Sept. Took a 2 month break because his body was terribly weakening from the chemo. Rebuilt his strength, but the 2 tumors in the liver started growing and 2 new ones popped up in the liver. His oncologist at Karmanos stated it would either come back from no chemo or they would mutate and become chemo resistant. For him, it was a good thing to take a break from chemo to rebuilt his strength. Back on the 5FU and Leucavorin. We will see after 4 treatments (which are every other week) where our journey goes from there. There is no doubt this is a difficult journey, but what choice to we have but to reach deep for courage and move forward…be it one day at a time. There comes an end to this…but it is not Today! The decision you make of where to go is up to you and your husband. Where you feel most comfortable in your heart and how much travel you can take. Everyone’s body is different and no promises or statements can be made to how you will respond to any treatment. Follow your heart!! My e-mail is jane.cruse@comcast.net if you ever need to chat. We’re all all connected being on this Road Less Traveled.
Comment by Jane Cruse — December 6, 2011 @ 3:44 pm |
I recently came across Marissa and Scott’s blog while searching for information on Folfirinox. I am already a big fan and find strength in reading about their fearless strides forward through this challenge. My now husband was diagnosed in late April of this year (we married May 27) with metastatic pancreatic cancer. At the time of diagnosis his primary tumor was in the tail of the pancreas and had progressed to the lymph nodes and some of the tissue surrounding the liver. He was on Gemzar until mid-October with great results; they then added Taxotere following increases in the CA 19-9…but no improvements were seen after 2 cycles. His oncologist didn’t want to initiate a stronger treatment until necessary; TJ is a recovered addict and has some liver scarring as a result (he celebrated 22 years of sobriety this past September). TJ is also young for pancreatic cancer he celebrated his 51st birthday this past November.
We found out late November we would be starting Folfirinox; we are currently still in-patient after his first round of treatment. His insurance company didn’t want to cover the treatment as an out-patient procedure so it looks like we will be inpatient for a few days every 14 days as long as his blood counts stay up. I guess this is best as they are better suited to manage some of his symptoms here in hospital with IV pain relief. He seems to be getting a little stronger each day, but he still is experiencing a great deal of pain and discomfort in his abdomen since trying to switch back to oral pain relief.
His last PET/CT scan showed improvements in the previously involved lymph nodes and the primary tumor is no longer visible in his pancreas..however his disease has progressed to lymph nodes surrounding the lungs (mostly the right, but also the left) and to some of the connective tissue in the abdomen. About two months back he also developed a right pleural effusion which we finally just got a drain put in so we can relieve the pressure at home; as this required multiple taps to drain the fluid (around 1700mL each time which completely compresses the lung and makes breathing challenging).
Some how we too are managing to find blessings within this journey; we find hope and strength in hearing about others successes and determination to live. It’s amazing how one’s entire perception changes following such a diagnosis; everything is intensely focused. We are trying to live each day with intention and not let any moment pass us by without notice. Seize each day and count all the blessings that surround each of us!
Peace and Light to you all,
We have begun and will continue to pray BIG for you all!!
Helen and TJ Solan
hec22@georgetown.edu
Comment by Helen Caldwell/ TJ Solan — December 14, 2011 @ 11:59 am
Happy Thanksgiving to you too! We were in Ohio and now just getting back in the swing of it. Glad the trip worked out – a cruise! Great idea! I think of you often and miss you all. You are always in my prayers. Keep up the good fight – you all are amazing how you are pushing on and through. Come and visit sometime.
MJ
Comment by Mary Jo — December 1, 2011 @ 10:13 am |
I am thankful for you and your sharing. You are truly an inspiration.
Comment by Tammy Jones — December 2, 2011 @ 9:01 am |
I continue to be inspired by your family’s ability to focus on the good aspects of your life and to find joy in each other, even while you are being pragmatic and efficient about all things medical.
Thinking of you, always!
Audrey
Comment by Audrey Ettinger — December 5, 2011 @ 11:45 am |
Marissa…You are an inspiration taking care of all you do & working!! My husband, Michael, is 16 months now. He has 4 turmors in the liver now and 2 are new…which shows progression. He also has suspicion that there is tumor activity in the abdomen lining. He is back on 5FU w/ Leucovorin every 2 weeks. It takes a good 4 dys to recover, but better now that it was since his body was able to rebuild some strength. Having friend and family support is like seeing the “face of God”!! Peace is found in this moment…struggle in being pulled into the next moment. I love your post…I love your honesty…I love the way you take it day as a new day to take this on the best way you can!!
I think of you, Scott and your boys every day as we journey on together!!
“Embrace the Day”,
Jane (jane.cruse@comcast.net or fb)
Comment by Jane Cruse — December 6, 2011 @ 3:54 pm |
Thinking of Scott and your entire family – Praying Big, Tim Wyman
Comment by Tim Wyman — December 9, 2011 @ 4:04 pm |