Forever & Ever. Amen.

Just over five years ago before Jason's cancer diagnosis, I would not have called myself a religious person. Heck, I would not have even said I was “spiritual” as people sometimes say. Jason and I used to argue profusely about life after death; college buddies over drinks around the campfire held in-depth conversations about “what it all means” and whether or not religion held any bearing at all. Jason was always at the center of those conversations – always a believer, always in-step with some sense of faith; hope that life after death meant something more and what was in store for all of us would be something beautiful, something important. Never did any of us imagine we’d have to really worry about it this early in our life. That we’d be forced to come to terms with the reality of the possibility of life coming to an end.

Back to TX. 

After Jason’s lung surgery, his pneumonectomy (his left lung was removed), we thought we were finally done; finally the future would be all shiny and bright. We were wrong once again and now here, with Jason, not only are we faced with these realities, I pray every single day in hopes that my prayers will be answered.

Jason’s recovery seemed to be going well initially. His one month checkup appointment at MD Anderson went as expected, though he was still taking pain medications and having slight pain in his back and front chest wall area. The doctors in Texas said this might continue for a bit longer and to expect it to decrease as he healed, but everything checked out.  Onward & upward!

The healing seemed to take longer than expected, though & Jason needed more time off of work than he had hoped. He finally was able to return to work in January, just as the Department was planning their big move to the new building in Grand Ledge. It was all very exciting. He was happy to be a part of it and was feeling pretty good, too, enough to exercise a few times a week in the new workout room. We were on top of the world – life was finally going our way!

As you all know, though, what goes up must come down. In February, Jason began having problems again – his pain level near his incision site and around his chest wall, continued to increase. Little by little he came home more tired each day, and we just knew something wasn't right – the dread in the pit of my stomach began to gurgle & work its way up. It was time for a CT scan and oncology appointment, my least favorite time of the quarter. 

Pain Mgmt.

As anticipated, there was a problem. In the upper section of his remaining lung, a smidgen of growth glowed brightly for our doctor - enough to send us back to MD Anderson for more tests, more consultations, and most certainly, more treatment eventually.

We were on a plane back to MD Anderson Cancer center within two weeks, leaving Madeline in the capable hands of her grandparents, our fourth trip to Houston in hopes of hearing different options, news of a breakthrough drug, or that somehow it was all a big mistake. Instead we heard more bad news and felt like we saw our lives flash before our eyes.

There was another CT Scan and a few more tests that resulted in finding the cause of all of Jason’s pain. Along the chest wall was a tumor that had grown in pretty tremendous size given the time that it had last been scanned. Back home, Dr. Rapson, our oncologist, felt it was simply scar tissue or inflammation on screen, but it had grown since the last CT Scan in March, so evidence suggested otherwise. The bad news was that it was more cancer & it had grown fast. The good news was that it could be radiated and with radiation the pain could probably be taken care of as it was, literally, striking a nerve along the side of his chest.

Dancing through the pain. 2014

The oncologist in Texas, Dr. Garrett is a wonderful guy – thorough, knowledgeable, and truly caring. He has this great bedside manner that Jason and I appreciate especially as we've traversed this nightmare we've yet to wake from.  He presented his findings to us and my heart sunk. I felt as though I’d been punched in the gut, my mouth had that feeling you get just before you’re going to lose your lunch, my eyes welled up and tears streamed down my face. Just as every time I imagine my life without Jason, I couldn't talk, but kept swallowing and found myself chewing on the inside of my lip.

Dr. Garrett suggested radiation for the tumor on Jason’s chest wall along with a chemotherapy pill to begin as soon as possible at home. He suggested then  Jason begin FOLFOX-5, a heavy dose of chemotherapy that is platinum-based, 12 treatments and takes 6 months, one in which Jason has had before, one that is hard on the system but is proven to work. In conjunction with FOLFOX, he suggested Avastin, indefinitely, another known medication to treat cancer. Dr. Garrett had a great suggested regimen prepared for Jason to take back to our local oncologist. He was equipped to help us fight this.

Finally, tears still coming down, even though the good doctor had supplied me with tissues, I asked the toughest question I've yet to ask “So, are we looking at Jason having a certain amount of time to live now that it has spread again?”

Forever & Ever. Always.

His answer was not the one I’d been hoping to hear but it wasn't the one we’d been dreading, either.

“Well, that's not what I said,” he started. “I didn't say Terminal. From now on, you’ll be treating his cancer as a chronic illness, one that will always need to be treated. Like a diabetic always needs to treat his/her diabetes, an epileptic treats their epilepsy. You’ll stay on top of this regularly, Jason will simply always be treating this cancer." A part of the Cancer Club for the rest of our lives. 

With that, though we moved on as we've always done… praying each day that Jason’s cancer doesn't breakthrough, doesn't spread or that it miraculously disappears!  

We are thankful for what we have - friends & family that support us along the way. We are hopeful for the future, and have faith and trust in our doctors and yes, in God. 

A Brighter Tomorrow

Before the surgery, July 2013.

We knew we couldn't hold our breath while we waited to hear about the surgery, so we poured ourselves into our family and life. Madeline and I enjoyed summer and Jason worked hard at the job that he had taken time away from while on chemotherapy again for the last 6 months, and periodically for the last few years. A job he loved, being the detective at Grand Ledge Police Department. No matter what the outcome, we were looking forward to our future.

It was while Maddy and I were away at summer camp that Dr. Swisher called to discuss the surgery with Jason - a 6% mortality rate, a difficult recovery period, possibly more cancer found at the site - but also that he would do it, and that he, Dr. Swisher, would do it if he were in Jason's place. A good sign. A date was set. Plans were in motion.

Almost too quickly the time came for our travel back to Texas. Jason had to entirely complete chemotherapy, his third round, complete his Avastin, an infusion drug used in conjunction with the chemotherapy, and because he’d developed a blood clot months before, a plan was created for his blood thinning medicines. And I needed to get my classroom & students prepared for my absence. Our trust was again placed in the hands of our medical professionals, and our faith, well, it had to be.

Many of our friends and family came together to help us as well - an online fundraiser was created to aid us with travel, medical necessities, and what we never intended or knew would happen - for Jason to be off of work for many more months than the doctors thought would happen. From the start, it was suggested Jason would be off of work for about 6 weeks after the surgery. Given Jason's lengthy cancer history, his sick days were dried up. We were on unpaid time right off the bat and it was a scary prospect, especially with a seven year old at home. After four years of battling cancer, life was throwing us one heck of a curve-ball!

After 1st lung surgery, 2011. 

Our time prior to the surgery in Houston actually started off quite nice, a mini vacation for just us two. Aside from Jason's diseased lung acting up, it hardly seemed like Jason was sick. Houston’s September heat bore down on us, but we still walked, caught local transportation to Downtown, and spent time that wasn't in the medical center on dates laughing and pretending life was normal, knowing that after this it would be spent recovering.

Less than a week later, Jason's mom and Aunt arrived for the surgery and we said our 'see you later's' to Jason in the hallway at MD Anderson and he was whisked off to the prepping area. I walked slowly back to that waiting room as if my own heart had been removed - my husband sent back to that cold, sterile surgical room without anyone that loved him gave me a sick feeling and sucked all the breath out of me. Every few hours a nurse came out to update us, volunteer services came out to give us coffee and snacks, and I took deep breaths every few hours as I considered what I’d say to people if he didn't make it through the surgery. It was a torturous 5 or 6 hours while the doctors rearranged the insides of my soul-mate who was again putting his life in the hands of a surgical team, in hopes to finally eradicate the cancer that had been holding him hostage for years.

The events that were actually taking place in that OR as we waited with baited breath in the family waiting room were very interesting, actually. Dr. Swisher, thoracic surgeon, was working his magic on Jason - he opened Jason through his back, stretched his rib cage open, removed a few ribs, then removed his lung, a delicate procedure to be sure, especially given the location of the left lung to his heart. The need to remove the pleura, the lining of the lung upon entering the chest cavity was determined to be essential, as the pleura was essentially "bad" tissue. Jason's lung was diseased, not helping his health in any way.

Dr. Baumann, the reconstructive surgeon, came in once the lung was out. His job was very important and very difficult. Dr. Baumann stretched Jason's back muscle, the latissimus muscle, to use in the reconstruction process. The lat muscle, they explained is used often in reconstructive surgeries - most often in breast reconstructions. In Jason's case it's use was and still is to cover the bronchus that had been cut when his lung was removed. For weeks, Jason needed to avoid large muscle movements, and stretch only slowly in order to not pull that flap off the bronchus. It is interesting to see and feel Jason’s scars and muscle movement after this surgery.

The moment Dr. Swisher came out in that waiting room and let us know he was done I felt a twinge better. When Dr. Baumann’s job was done & Jason was heading to recovery, I slipped into the bathroom & the tears came pouring out. There would be many  hurdles in the next few days I knew, but he’d made it off the table.

4th Birthday, Colon Surgery, 2009

Jason has had a number of surgeries in the last years, major ones, too. This has been the biggest, the most dangerous, the farthest from home. I was thankful for family with me, but so many worries swirled in my brain -  reasons to worry when your best friend, the love of your life, your soul mate, your one and only, the father of your child goes in for surgery - the "what ifs" took over my mind the days before as we prepared for surgery, we were inundated with doctors, procedures, paperwork, signature pages. When the “sign on the dotted line” page came, it was difficult, as it has been always, to consider the complications, advance directives, the possibility of death.

Like anybody, each time Jason goes under the knife, as morbid as it sounds, I have to think about what I'd tell Maddy if he doesn't come home with me, if that “and of course, there is the possibility of death,” complication does occur how would I tell her that Daddy is gone and what would we do without him? We've had numerous conversations with her to tell her Daddy’s cancer is back, Daddy will have another surgery, Daddy has to have chemotherapy again, radiation, and more recently we have to leave  to go to Texas for surgery - you’d think I’d have something prepared. So, when that signature line comes up, that discussion rolls through my mind, and my future, my past, my life flashes before me, but each time, the discussion is different. The words just don’t stick, I can never seem to find the right ones.

I hope it’s a sign - a sign that it's a discussion I will never have and, as always, we look forward to a brighter future.

Track 2

Just some of that fab support network & fav wedding pic. 

Jason has always been an incredible man to me. Why else would I marry him? I didn't need to see him combat cancer over and over to know what he was capable of, I knew he was worthy of this life! He and I fell in love becoming best friends in college, as we both were figuring out how to manage our lives and become adults in this world. I went to Michigan State University and graduated in the College of Education. He decided to fulfill his lifelong dream of fighting crime when he heard the criminal justice program and Police Academy at Lansing Community College call his name. We both pursued childhood goals and had remarkable friends and family to love and support us all along the way. Nobody was surprised when one Christmas Eve, Jason finally popped the question and we were set to get hitched. It was just meant to be from the start.

December 2010 - A chemo we will go. 

Jason and I actually waited quite a while to have the wedding, though. Much like a lot of things with the two of us, we don’t rush into much. We tend to bide our time, wait for the right moment, make a plan. It was important to be sure school was out of the way for me, a job was lined up, my master’s degree was in progress, and my first year of teaching was under my belt before we walked down the aisle. Everything needed to be just right so when we decided to have that houseful of babies we dreamed of we’d have no worries, or when we wanted to travel, we could do just that, or just in case we wanted to remodel the kitchen in our first home, it was no problem. Little did I know, the track we were laying out, the one we’d been planning for all this time, wasn't the one that we would necessarily follow. The plan was in place, though and that was enough for me back then – I had my guy and we were very happy together.

Enter cancer. And it had other plans for our life.

Summer of radiation, 2011. Maddy was turning 6. 

In the year of Jason’s diagnosis everything we’d ever known about our lives, ourselves, and our future was challenged. I think Jason confronted some old beliefs about himself, even – about how much he could endure, just how brave he could be, and what he could and would do in order to survive this disease. We learned, we loved, and we grew together into a family living with cancer. We've grown stronger for it and that is a great thing.

After Jason’s lung surgery in September of 2010, chemotherapy was once again in order. So, that December , he began the next six month bout of cancer-killing drugs, a lighter round this time though, since it didn't contain the harsh drug oxaliplatin like the first round, though other ones that complicated life a bit, to be sure, were added. Dr. Rapson added a new infusion treatment called Avastin, which would continue even after the 12 cycles of chemotherapy were complete. Avastin’s job is to slow the growth of new blood vessels that feed tumors, essentially to stop the spread of any cancer through the body. The drugs may have been a little ‘lighter,’ but they did affect him and his body, and of course his mind and emotions. He had symptoms, but as always – he didn't complain - to you, to his coworkers, or to his boss – he worked through it, he lived through it, he raised Maddy through it because if he did not, life would have gone on living without him through it and that would not do, it just wouldn't. The track we were on seemed to be a good one for the time being. We had a plan with Dr. Rapson and we felt good about it.

A true Avett fan! 

Unfortunately, that time was short lived. Though Jason’s PET Scans during and right after chemotherapy had shown good results, promising results even, the June scan was not in our favor. The results showed an increase in activity in his lung - again. Another day that will go down in our cancer history was when Jason called me, yet again on one of the final days of school. With tears in my eyes and a quiver in my voice, I had to let some good friends & co-workers know things were ‘just fine,’ because at that point I had no plan, we didn't anticipate this at all. Just an increase in activity and a bunch of ideas swirling in my head. if I started to speak, those ideas would become a weepy mess of tears and snot.

The activity increase wasn't a lot, but enough, of course. Just enough to be bugged about, to look into, to worry about, and yes, to treat. This time, that summer, the summer of 2011 – now two years from the initial diagnosis - Jason’s treatment was radiation.  So Jason began a six-week course of daily radiation therapy, which was said to be very effective. In fact, two PET scans later proved just that – activity in the lung was decreasing. All was right in our world and we were back on track ready to make plans - yet again.

Our family has a favorite band, as many of you know. Jason and I have seen The Avett Brothers in concert a number of times and we've even taken Maddy to one of their shows. Maddy and I share a favorite song on their most recent album called Live and Die. She never remembers the name of the song and instead calls it Track 2, its place on the album, which is perfect. Every time I hear this song, I consider how perfectly it aligns with my life. The Avett Brothers, unbeknownst to them (unless of course they've read all the stalker mail I've sent… just kidding… hee, hee… hee), have gotten me through a lot of emotional situations these last years; they are my go-to band for emotional rescue and that song is a great reminder of our journey and our growth.

On the surface & in the first lines the song reminds us, “all it'll take is just one moment, and you can say goodbye to how we had it planned.” The path Jason, Maddy, and I were on was far different than the one we originally planned and because of these deviations we could not control we've made some huge adjustments to our life plan. And we've learned a lot along the way - every time something new has been thrown our way, every time life has handed us a lemon – or a scan with increased activity, we've adjusted. More than anything we've learned a lot about each other, about other people, the human condition – and about how to survive by leaning on each other. And like the song continues to remind me, we always have each other. Just about the only thing that has gotten us through all of this, is to always come back to us, our center, to find one another, love one another and push through it – much like when Jason first popped the question way back when and we knew that it was just meant to be – our family, our friends and the people we love are about the only certain things we have in this uncertain world and so we know we must lean on each other during the most difficult times -

and these have been our most difficult times.

No matter what cancer throws at us, or life gives us. No matter which track we are on, we will always have each other.

Life Doesn't Get Easier, You Just Get Stronger

Prior to Jason beginning chemotherapy, a lot of healing needed to occur. His body required healing, and our hearts needed a rest, too. We had just been through so much emotional upheaval in our home and it had been exhausting. In just two months, Jason was diagnosed with colon cancer, had undergone one surgery to remove a good section of his large intestine, another to procure possible future Gooleys, and even another to place a port in his chest for chemotherapy. We had been under a lot of stress already, needed a break and had a lot yet coming. We knew the next six months we needed to rally to support each other – life was about to get tough!

At work, many don't even know he is sick. 

When we spoke with Dr. Rhapson we were happy to know that she was very well received with her peers and patients alike. She had an amazing reputation and an awesome bedside manner. I’ll never forget the first time we consulted with her. She said, “So colon cancer, huh? Well, crap!” We had an immediate bond with her and have appreciated her ever since. Not only do we respect her opinion, but we know that she is moving forward with our future in mind. The ‘Doc,’ as she is often called in office, treats her patients with compassion, dignity and respect - and hires & trains staff to do the same, that all her patients have great esteem for her. We were relieved to find a doctor we felt comfortable with, especially since we had such a haul ahead of us. 

Jason was ordered 12 cycles of chemotherapy, for his particular type of cancer – Colon Cancer, Stage III. The tumor removed had grown quite large, the size of a walnut, had invaded the colon wall, and had invaded the lymphatic system – it was in two lymph nodes. His cancer was a beast.

A rub for luck. 

Jason began chemotherapy September 23 of that year with Eloxatin, brand name for a chemotherapy drug called oxaliplatin, a platinum-based anticancer drug. Oxaliplatin is given in combination with other drugs, 5-fluorouracil plus leucovorin (5FU/LV) and has some pretty nasty side effects.  He went in every other Wednesday where he sat in the infusion center at Red Cedar Oncology and was sent home with a pump. He came back the next day, Thursday, for a few more hours of infusion fun and was sent home again with another pump. Finally, after a full 48 hours of being infused with toxic drugs to kill the cancer cells in his system, the portable infusion pump was taken out of his port, his port was flushed, and he was sent home free of the tether that bound him to the drugs that made him ill - though he wasn't free from sickness for the weekend, or the week for that matter. He would try to battle the nausea, exhaustion, and the irritability that came with the chemotherapy drugs, the steroids, anti - nausea medications, other treatments and all the other issues that came with the management of this disease. It was a wicked time for all of us, especially since we had a four year old to try to make life somewhat normal for at home.

A tender moment. 

For six full months, Jason completed chemotherapy and then tried to bounce back to normal the following Monday morning for work - through the pain and side effects of it all. Every Monday morning. Six Months. Chemotherapy.  He was pretty miserable, to say the least, but managed to take as few sick days as possible yet very few people heard about the nauseousness he was feeling at the beginning of the week, the  neuropathy, (tingling & numbness) in his fingers and toes, or about the gastrointestinal issues he had nearly all the time. He just didn't complain, especially at work.

This first round of chemo, there were a number of officers in his department that donated sick days to him. Jason had been an officer there just about five years so did not have enough days to cover lost time & wages from a surgery and all that was needed to get him through the chemotherapy, too. Those sick days were a blessing to our family and we are forever grateful to those who donated. At the same time, at my own job, teachers throughout my district did the same for me so I could take him to treatments and appointments.

Love & laughter - Daddy Warbucks

Incredible, giving, beautiful people we work with! We are thankful for them daily!

Jason’s ability to manage this life has always astounded me, especially given the side effects of the different treatments. He has faced this head on and we have stood by him, of course will stand by him every step of the way. Just before this first round of chemo, our friends, in honor of Jason, shaved their heads in anticipation of Jason losing his hair. People say in times like these they find out who their friends truly are. We did. They haven’t let us down.

Our life did get tough. And I think our skin got thicker right along with it – we got stronger. We cried a lot, but we didn't stop laughing, either. I’m not going to lie – this first round of chemo was nothing I’d ever prepared myself for and nothing I’d ever imagined my life to be. But, we had each other and a great bunch of friends and family and we were working our way through this one day at a time together! Thank God for each other!

Best Laid Plans

4th of July with friends!

I’ll never forget the day, even if the exact date escapes me - July of 2009 – after the 4^th, but a few weeks before Maddy’s fourth birthday.  Jason had been having some strange symptoms which were getting worse and had finally peaked Fourth of July weekend at a friend’s cottage, our annual get-together with our college buddies. So, a few interesting doctor visits were scheduled. First of all, some blood loss he’d had from these “strange symptoms” resulted in a worried conversation with a nurse that simply couldn’t believe he was able to stand. He had ridiculously low hemoglobin levels so was to go in immediately the next day for a blood transfusion and his first trip to the gastroenterologist was also scheduled. This particular doctor visit is the day that is etched in my mind.

Breakfast in bed - a Gooley tradition!

Jason, his mother and I traveled together to Michigan Gastroenterology. She was nervous but I wasn’t – how could anything be wrong? Jason had made the mistake of looking up worst case scenarios on the internet and quickly decided it wasn’t in our best interest to continue that way of thinking, as a detective he is a worrier by trade and habit, but we talked ourselves out of that, a little.  We were fairly positive that his issue would be fixed quickly and we’d move on easily from this; we had a life to live.

Our questions were answered in a matter of minutes. Dr.Weatherhead is not only a great doctor, but an efficient one as well. He had Jason in and out and answers for us in no time. Unfortunately, they were answers we simply did not want to hear, ones that did not fit into our life plan. Cancer. The Big C.

The doctor quickly explained that he’d found a mass in Jason’s colon that was much larger than a polyp and that surgery would be required. Within minutes, our entire world changed. 

1st skates for her birthday!

This didn’t make any sense to us. We had a three-year old at home. We'd been trying for a second baby and though had been having difficulties, had just been given the all clear from the fertility specialist after my own minor surgery. We had plans and CANCER did not fit into those plans. Jason was 32 years old and had no health problems; just your average guy whose 30’s were suiting him just fine - he was a great dad, husband, son, and friend. Cancer just was not going to work for us!

Immediately we were set up with a recommended surgeon, Timothy McKenna, DO, from Mid-Michigan Surgeons. Dr. McKenna explained the surgery and told us his understanding of possible outcomes and we set a date for Jason’s colon resection surgery. July 29^th, just a day before Maddy’s 4^th birthday. Had I to do this over, I would have slowed  this down a bit - for us, for Maddy, and because of the actual outcomes, some we wouldn't know or understand until well later. 

Thankful for Aunt Laura & Grandma who made her day special!

Madeline obviously was just fine having her birthday party anytime – she was going to be 4 - balloons, cake and gifts were on her mind! But as a mommy, uncertainties tore through mine. It was her birthday and she would have to share it with the memory of Daddy in the hospital - what if she remembered that, what if she was upset by that, what if the absolute UNTHINKABLE happened? Worries on my mind, unable to verbalize it all, but weighing me down nonetheless. All I could say was, “but it’s Maddy’s birthday.”

July 29^th came and the anesthesia took Jason down into a deep sleep. The surgeon reported hours later. A number of nail-biting, toe-tapping hours, that even now, make my stomach turn, my heart ache, and create wells of tears in my eyes. Family and friends gathered in those hours offering food, conversation, hugs, shoulders- anything to take my mind off the fact that the love of my life was under the knife. And just like that Dr. McKenna, with very little bedside manner, more of a bedside swagger, said, “Everything went great. As good as we could expect.” 

A treasured memory - at the hospital.

In those hours, about 18 inches of Jason’s colon, or large intestine, were cut out of his body in order to eradicated the walnut-sized tumor eating away at his system. The good news was that he was able to spare the very lower part of his colon, so he would not need a colostomy bag, one of Jason’s greatest fears. The bad news was that the tumor had moved into the colon wall. We’d have to wait to hear if the cancer had spread to the lymph nodes.

One of the very worst parts about cancer is this anticipation - waiting for someone in surgery, expecting your doctor’s call for next steps, the delay between giving blood and getting the results, waiting for PET scans and CT scans, hearing from doctors or nurses with results of any kind. In this case, we were waiting for the pathology report. This report would give us more direction in care, though we were already fairly certain that chemotherapy was going to be the next step – that tumor was a monster! By the end of the week, we were given a more solid answer – of the nine lymph nodes biopsied, two had cancerous cells. To chemo we go!

That was just about four years ago this summer, right as our cancer story began. None of us would ever believe that we would still be fighting this fight, battling cancer, that Jason would be on his third round of chemo today, fighting his third tumor, or staring down the barrel of yet another surgery, yup, his third to remove a tumor. They say three is a charm. Let's pray that it is. Prayer seems to be a recurring theme in our life. Oh yeah,and laughter. Lots and lots of laughter!