Hooray! More positive affirmations! Everything seemed to check out well at our appointment downtown today! Heres a little review of the answers to our most pressing questions.

The swollen areas are probably just inflammation continuing from the surgery. They said it can be quite common. It could also be that the skin wasnt pulled as tightly in some places which could cause it to not be exactly symmetrical. Nothing to worry about.

One thing that we did find out is that Nick will have to get a colonoscopy in May to make sure everything is good there. (Since there is a higher chance of recurrence in his colon than anywhere else other than his peritoneal cavity.)

Another question we had was about the bleeding that Nick is still experiencing. The doc thinks that the reason his incision is taking so long to close up is because the chemotherapy isn't allowing the flesh to grow back as quickly. They said it's nothing to be worried about but that the chemo just affects some people that way.

The best news is that the doc doesn't see any reason why we can't go to Hawaii in April! So, you better bet I'll be booking our tickets tonight. :)

Thanks for all the prayers! You guys rock! Aloha for now...

DR WHITING TODAY. Today we are heading off to Seattle Cancer Care Alliance to meet with Nick's local oncologist. We'll be going over more information about what's the come. Not sure that we will really have any new information. I just think it will be a review of what we heard in Omaha. Which is that we are in the "watch and wait" phase (which will hopefully last for a very long time). The doc will also be having a little look-see at Nick's incision and some of the swelling and painful areas around it. We are fully expecting GREAT news, but keep your fingers crossed for us, just in case. :]

DR. LOGGIE 4/4. Our next follow up appointment with Dr. Loggie, the specialist in Omaha, is scheduled for April 4th. We will be landing in Omaha on the night of the third and then going to the hospital early the next morning for the MRI and tumor markers before our meeting with Dr. Loggie at 10am. We are excited to see Dr. Loggie and his staff again and to get this first of many follow ups out of the way. We will also be discussing the possibility of being able to conduct future tests in Washington state. There is a possibility... and this could save us a lot of money. We will only do what is best though and will find out more in April. We are again, very optimistic, but appreciate your prayers and positive thoughts!

LONG AWAITED VACATION 4/5! And, now for the exciting news....! We had been getting ready to head to Hawaii to visit with some dear friends when Nick's stomach pain first hit. When Nick was admitted into the ER, we were just a week away from our trip and, of course, ended up having to cancel. We had been so looking forward to the vacation but obviously had some important things to take care of immediately. We had decided at that time that we would reschedule the trip as a celebratory one as soon as it looked like Nick's health would permit. And, now that we are finished with treatment and Nick is slowly gaining his strength... we are planning on heading over the day after our Omaha appointment! 

THIS PLAN ROCKS BECAUSE:

1. We get to go to Hawaiit (I've never been and am out of my mind with excitement.
2. Instead of dreading the upcoming appointment, we are overly excited about heading to Hawaii immediately afterwards.
3. We get to visit a couple of amazing friends.
4. We will save money on the flight back to Seattle and will only be paying for 3 flights instead of 4 for both trips.
5. 5. Did I mention the sandy beaches and blue waters? :] Can't wait to share pictures with you all.

Thank you again to all of you that have helped us out over the past couple of months. We really appreciate the prayers, support and love. Please continue to pray that these appointments go well, that the tests come back clear and that our spirits are lifted by our upcoming trip to sandy beaches. <3

We got over 9 inches of snow at our house in Monroe and we got to take a couple amazing walks!

Today is January 22nd. Exactly four months ago, on September 22nd, Nick went in for an exploratory surgery at Evergreen Hospital and the doctor's found a lot more than a burst appendix. Exactly two months later, on November 22nd, we were in Omaha and Dr. Loggie removed the cancer cells he could see and proceeded with intreperitoneal heated chemotherapy.

The last four months have been some of the rockiest and so many wonderful people have been surrounding us to make sure we get through it. I really feel like my faith in God and in people has been renewed. We really want to stress that we are SO appreciative of all the help that we have received; the prayers, positive thoughts and financial support has been such a major blessing and we just couldn't be more thankful. I wish there was a way that we could thank each individual person for their help, but with so many letters, cards and notes coming to us, we just don't have a way. Please DO know that we really do appreciate all the time spent and the money to help us with medical costs. Each and every message of love has brought warmth to our hearts and we are so blessed to have so many caring people in our lives.

Life is finally moving along here at the Magnotti house... Nick is starting back at work tomorrow and we are very excited to get back to 'normal.' He wont be going back to the 50 or so hours he was putting in before but will try to get in 36 hours a week (so that we can firmly hold onto his Medical Benefits).  I've slowly gotten back to work full time at Thinkspace and enjoy working from home most Fridays. Our little rascal puppy, Odinn, is growing up fast and is already 8 months old. We missed out on a lot of his training while being out of state for Nick's treatments so it was tough at first because he wasn't on the best schedule. Now that things are settling down and going back to a routine, he is getting much better with his training and becoming a great little sidekick for Rucky!

Rucky and Odinn, left to right.. We love our mutts!

Cancer sucks. Everything has passed in such a whirlwind that sometimes it feels like it was all just a dream. And, sometimes, the reality of what we are facing and did face becomes all too real. Very soon, we will be planning our third trip out to Omaha for follow up tests and appointments. Sometimes, it scares me stiff to think that Nick's cancer will never actually go away. Sometimes I imagine the conversations I will have to have with my future kids, about why daddy needs to go to the doctor so often and about why his stomach looks the way that it does. Sometimes it just makes me really angry. But most of the time, it just reminds me that you never know how long you will have with those that you love.

Nick enjoying the sites in Omaha, the day before his HIPEC surgery.

This weekend, a close friend of ours received a depressing diagnosis and others that we've only recently met have heard of recurrences. On the forefront of my mind is the fragility of our existence here on this earth. Our hearts go out to our dear friends and all that have to deal with this dreadful disease. As this year starts off on an even more reflective note than per usual, I am reminded just how precious and short this life can be. Each and every day matters more than you'd think.

So, this year, I am setting an intention. I have designated a quote as my mantra for every day of this year. It's always been one of my favorites, but to keep it on the forefront of my mind I wrote it out and pasted it above my goals on the wall in my office. This year holds some amazing and some hard things in store for us, but God will turn it into a year filled with His glory all the same. I know that no matter what happens - this is going to be a great year, a great life... I can just feel it in my bones.

"Quit living as if the purpose of life is to arrive safely at death. Set God-sized goals. Pursue God-ordained passions. Go after a dream that is destined to fail without divine intervention. Keep asking questions. Keep making mistakes. Keep seeking God. Stop pointing out problems and become part of the solution. Stop repeating the past and start creating the future..." -Mark Batterson

Nick's incision had a hard time closing up. For almost three weeks after the surgery, it was bleeding quite a bit out of one spot below his belly button and one spot at the top of the incision. It was definitely hard being so far away from our doctor because I just didnt know how to explain how much blood. Luckily, over the last week or so, it's bleeding less and less but parts of the incision still look like an open wound.

We started seeing some discolored discharge coming from the wound about four days ago. There wasn't a lot, he didn't have a fever and the incision wasn't red but, we decided to take him to a local surgeon just in case. Our appointment was yesterday and after the Doc pushed and squeezed, poked and prodded, he decided that it was looking fine and that the discharge was probably just his body trying to heal. He advised us to begin scrubbing the incision (before, we were advised not to do so) and to use some neosporin to aide in the healing. He also asked us to come back in a week so that he can double check that it is continuing to heal properly. I'm not going to lie that I am feeling much more realived that someone with some sort of expertise took a look and said it was fine. Big sigh of relief...

Nick is no where near being physically "back to normal," I think this is going to take a long time. His abdomen is still swollen from all of the messing around they did in there and it's difficult for him to bend. He gets really tired, really fast and wears out easily. He laughs now, but quietly and without gusto - lest he tear the incision back open. Though we are nowhere near "normal", and not sure if we ever will be, I couldn't be happier. Cancer is disgusting. Cancer is a thief. It can be depressing. But, it's also bittersweet.  Cancer is enlightening, for it opens your eyes. Empowering, for it shows you just how strong you can be. And, encouraging, because it shows you just how much people really care.

I am blessed.

It's weird for me to be back to work and back to (almost) routine. To go about life and continue on with it as if everything is normal when a doctor can't ever tell you that your husband's cancer is gone. For "regular cancers" (more common ones at least), doctors can normally say that if you go seven years with normal scans then you are "cancer free." From what we can tell right now, they will never be able to say that for Mucinous Adenocarcinoma patients. There is a slight chance that the rules may change, but we will always have this lurking possibility of returning abdominal "mucous" creeping around the back of our minds.

If Nick's diagnosis had come twenty years ago, we would have been completely out of luck. They would have sent us home, advised us to get Nick's legal affairs in order and asked us to make him comfortable. We wouldn't have had a chance. The HIPEC surgery has only been around for about 18 years. For many people treated with HIPEC for the first 7 years or so, the results were less than successful. Surgeons weren't experienced and they weren't sure which versions of PMP (psuedomyxoma peritonea) it would help. Over the last 11 years, people have been getting better and better results. There are a few people that have gone 8 years (and counting) without a return of the disease. We will always hold onto the hope that we may become a part of that club. As we go and as Nick's recovery continues, we will add additional weeks, then months, then years to our length of time without treatment. Instead of looking behind, we will always be looking ahead. Looking ahead to the people that got the surgery 8 years before and follow them in their record-setting ways.

I will never understand why some people get sick and others don't. I will never understand why some people beat cancer and others can't. But, I do believe that one day, it will all make sense. I am training my thoughts. I am dwelling on the positive and striving to forget about all things negative. I want to be forever present for Nick. Present in each day. Present in each moment. When I feel myself starting to get anxious, I continually return to the verse that Nick chose for his fight against cancer... "Trust in the Lord with all your heart and lean not on your own understanding." Proverbs 3:5

[IMPORTANT Prayer Request: This week, I am asking you all to pray for my friends Joyce and Ron. Ron is a retired military veteran and he and Joyce have been married for over 40 years and live in Arizona. Ron was diagnosed with the same cancer as Nick (mucinous adenocarcinoma of the appendix) about a week after Nick. He went in to get his HIPEC surgery on Monday and they found that his cancer had already spread too far. His mucous was deemed "non operable." They are starting him on intravenous chemotherapy to see if it can help. But doctors told Joyce on Monday that they aren't giving Ron very long. Ron knows our Lord and is a strong man and I thank Jesus for that. But, please pray that he is comfortable and for the chemo to work a miracle. Pray for Joyce and their son, Tim. I can't help thinking that this could have been us. This could have been our story. I would hope that you would join me in prayer and lifting up Ron and his family. Feel free to leave a comment on this blog or email it to me at alyssa.magnotti@gmail.com and I will forward it on to Joyce for her to read if she would like.]

In freezing Omaha, two days before Nick's heated chemotherapy treatment (HIPEC Surgery)... We'll know he's fully healed when he can pick me up again! ;]

It’s been a little over two weeks since Nick’s HIPEC surgery.  The recovery has been tough and tiring for Nick but we have been getting good news ever since. Last week, the pathology report for Nick’s tumors removed during surgery came back negative (which means that most of the cancerous tumors were taken out during his first surgery). Today, we received a call that I can hardly wrap my brain around.

Dr. Loggie does not think any further chemo is necessary at this time. Did you hear that? NO FURTHER CHEMO! The heated chemo treatment that Nick had is equal to around 6 strong doses of intravenous chemotherapy treatments and Dr. Loggie thinks it was sufficient enough to stave off the disease - for now and, hopefully, forever!

For now, the recommendation is to "watch and wait." In 4 months, we will head back down to Omaha for a check up. MRI's of Nick's abdomen and subsequent tumor markers will be taken. These tests will provide the new baseline for Dr. Loggie’s team to consult and compare for all future tests. If everything comes back clean at the 4 month mark, then we will be doing follow up tests only once per year! ONLY ONCE PER YEAR!

We are so thankful for this news and are planning on following Dr. Loggie's recommendation. He has seen hundreds of patients with Mucinous Adenocarcinoma (and for something so rare - that's a lot) and sees over 100 patients a year with different forms of Psuedomyxoma Peritonea (PMP). We are more than confident in his opinion and the experiences he has had over the past 20 years with this formidable disease.

We want to thank you ALL for the prayers and support over the last few months – our friends, family, and community have provided us with amazing hope, encouraging support and a reinforced faith and we couldn’t be more grateful! Please continue to pray for Nick's full recovery. Also, please pray that this disease doesn't come back for a very, very long time!

This year, the tree went up a bit later than November 25th, but that's no matter - I'm just happy I had my dad in law to help me put it up! :]

As a young girl, I would count down the days – not until I got to unwrap gifts – but until the day after Thanksgiving. Every fourth Friday of November, my home was transformed into a blissful wintery wonderland. Outside, my father would hang lights on the trees flanking our long driveway, the eaves on our house, the banister on our front porch, and even illuminate the homemade tree fort nestled in our back woods. Inside, my mother would work her magic on the large tree that we’d picked out as a family and trail cinnamon-scented garland along the stair rails. After a long day of a family effort to deck every hall, divine vapors of dinner swirled about the house. Before we sat down to eat, we would all make our way into the family room. My brother, sister and I cuddled around my mother on the big couch, sneaking chocolates from the coffee table candy dish. My father sitting in the poofy chair by the warm fireplace, silhouetted by twinkling lights. He would then read to us the story of the birth of our Savior as songs from the Choir of Saint Thomas quietly played in the background.

The story of the birth of Jesus is one that has always held me in a state of wonder. Even now I marvel at the strength of Mary and Joseph. Just consider the journey they took. Consider the pain and trials that these expectant parents endured all while following God’s plan – only to end up in a town without a bed for them to rest. I can only imagine what must have been running through Mary’s mind; pondering what it might be like to give birth to her son on the side of the road! From their perspective, it all didn’t make sense. Why would they have traveled to this little town and have nowhere to sleep? No clean place to make their bed? Just when all seemed hopeless; God provided. Granted, He provided a smelly, old barn. But, it was there and it was warm and it turned out to be exactly what they needed. Centuries later, that smelly barn would represent the humbleness that our Lord possessed.  It all fit so perfectly into the big picture even though it might not have been apparent at the time. God always has a plan and is ready with miracles on even the bleakest of winter nights. Christmas has been a time for miracles – ever since the night that joyful new parents celebrated the birth of a healthy baby boy in a barn on the outskirts of Bethleham.

I believe in a God who can achieve the impossible. Though this season has turned out very different than I would have planned, I know that it will provide us with exactly what we need. With the Lord on my side, I refuse to let the magic of the Christmas season go by unnoticed. Despite all that has happened; I will continue to revel in the miracles of Christmas past and be on the lookout for miracles of Christmas present. If you look close enough, you just might see one yourself…

 

Photo of Nick with his first solid meal at the hospital - scrambled eggs! Saturday, November 26th

Did you know that flying is stressful? At least it is for me. Let me tell you that flying after undergoing a major surgical cancer treatment is even more stressful. But, the silver lining of all that stress was that we didn't even have time to think about the fact that we were expecting an important phone call... The one that would tell us how Nick's pathology reports turned out. During Nick's HIPEC Surgery, Dr. Loggie with Creighton Medical Center removed a part of Nick's omentum and his right colon. There were also quite a few masses and tumors removed. One mass was larger than a 3D quarter and was located on Nick's rectum - this mass seemed to stir up the most suspicion, the most potential for danger, and the possibility of another surgery in the very near future. If I had had the time, I would have been really stressing this call and what it would mean if we had to get yet another surgery this year. But, like I said, I just didn't have the time. :]

When we landed in Seattle, I was all too excited to find a voicemail waiting in my inbox. Sure enough, it was Dr. Loggie's office calling to say that the pathology on all of the masses and lymph nodes came back negative! We are so extremely excited about this because it means Nick gets to keep his rectum! YAY!  (Sorry for the gore, but the had the mass on his rectum been cancerous - we would have had to go in for another major surgery and Nick would have been fitted with a bag buddy - if you know what I mean). It also means that the cancer isn't showing any sign of having penetrated his lymphatic system! So, we are really praising God! This negative pathology means that any of the cancer that was over 2MM was removed in Nick's first surgery back in September. Anything that was under 2MM, was hopefully obliterated by the heated chemotherapy treatment on November 22nd.

Nick is doing well but is very surprised at the amount of energy that he's lost. This morning, he insisted on making himself a pot of coffee and a bowl of cereal. But after the coffee, he got really tired and had to sit down and rest. Being home is nice, but also a bit stressful for me. In Omaha, my only responsibility was caring for Nick. But, at home, there is just so much more to be done. Luckily, Nick's dad is helping us out a lot and we also have a team with Gloria's Angels (an amazing non-profit that helps organize friends and family around patients that are going through tough medical ordeals) that will be helping us in the coming weeks and months with everything from laundry to meals to dog walks. We are so thankful!

I know what y'all are thinking at this point; "What's next?" Well, so are we. We still dong't have any more information on next steps for Nick. We still have to do a lot of research and still need to talk to the doctors. We should have more information by the end of next week. As of right now, we just want to enjoy being home and focus on Nick making a healthy recovery.

Its been TWO months since Nick was initially diagnosed with mucinous adenocarcinoma of the appendix. These two months have been crazy but we have learned more than we could have ever thought possible about the Lord's sovereignty, grace and peace. The Lord IS good!

Please pray for: a quick recovery, calm hearts and for us to be able to focus on the present instead of the decisions that we will be forced to make in the coming months.

Nick's Welcoming Committee! (Back at the hotel after only six days in the hospital. He was pretty excited at this point. :] Notice the wonderful banner that my sister made for him!)

One of the first things that I noticed about Nick was his smile. I think everyone would agree that Nick has one of the most gorgeous smiles and that it is almost constantly present. He is one of the most optimistic guys I know and he’s able to see the silver lining in almost every situation (even cancer). The only time Nick’s smile ceases to show is when he is in pain - real pain. There have only been a handful of times that this has happened. One of those times was when Nick started feeling pain in his abdomen from what turned out to be a tumor. One was after Nick’s initial appendectomy and de-bulking surgery and one was this past week.

Before Nick went into surgery on Tuesday, we chatted about everything that didn’t matter. When it was finally time for his spinal morphine injection; the nurses told us that it was time for me to leave. I said a short prayer and reminded Nick that God would be with him throughout the surgery. We held it together pretty good as we said our goodbyes. I told Nick that I loved him and that I would be right across the hall no matter how long it took. Nick told me he loved me, that he wasn’t scared, and that he’d see me soon. After many kisses and a last hand squeeze, Nick looked at me and I realized that both of our eyes were starting to glisten. That’s when he flashed me that genuine smile. I can't tell you how much it comforted me. Not once during the nine hours away from Nick did I tear up again and I am sure it was that smile; It felt like a promise from God that no matter what everything would be ok.

After surgery Nick was in a lot of pain. He did a lot of sleeping and in the few minutes that he was awake, he was still very tired. When we talked to him, it was hard for him to talk back and he only did so when necessary. When we joked around in the hospital room, he didn't participate. And, when Nick's dad performed funny little dances to try to get Nick to laugh; he couldn't even crack a smile.

Then the clouds parted… :] Yesterday morning Nick woke up and said he was hungry with a little grin (which was a first since before the surgery) so I knew things were looking up. Once he had a little bit of applesauce, Nick's huge smile finally made an appearance - that's when I knew that we were finally on our way! Nick was feeling so much better and it was so apparent! He had scrambled eggs as his first solid food and then progressed to part of a Jimmy John's sandwich for lunch and continued to smile throughout the day. Apparently, that smile worked its magic on the doctors too. Around 5pm - he was discharged from the hospital!

We're now staying down the street from the hospital for the next couple of days and then will be seeing Dr. Loggie tomorrow for a follow up. If Nick is cleared to fly, then we could be home as early as Tuesday! We are so happy to have a real bed at the hotel now, but we are even more excited to sleep in our own bed soon. We know that Nick still has a long road to full recovery and we definitely still need prayers. The results of the surgery have been amazing so far, but there are still many things to pray for. :] We should be getting the pathology reports back from everything that was removed in surgery on this coming Wednesday.

No matter what results we get from the pathology report, we will still need to make a very big and hard decision of what treatment we pursue from here. I'm trying not to focus on it too much and just focus on Nick's recovery from this treatment, but the decision is definitely looming in our future. Since there isn't any real research on the best choice for us and no doctor will be able to make the decision for us - we will really need the Lord's guidance on the best path to take from here. No matter what we decide – I will always savor that smile. :]