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.

What's Normal Anyway?

Livin' life.

Each time a cancer treatment is complete, friends, family & acquaintances approach the subject with a "well at least that is over" attitude. We all go about our business as if that is it. Life will now go on as if cancer had never entered it, even though we know it has changed us tremendously, deeply. For those of us that it affected the most closely, we live differently - love more deeply, approach life more thoughtfully, with more respect than before, appreciate it more. We now try to prioritize daily activities even while taking responsibilities and deadlines seriously as if that little blip didn't happen, because our expectations must return to normal, too - gotta pay the bills. But in our minds we know we need to do more to take time with those we love, hold friendships more dear, draw lines in the sand more clearly than we did before because now we know just how precious life is, even if those that didn't walk every step with us don't know that yet - we know that any moment that cancer could return and take all of the important things away again. 

What so many people don't realize is that families who've battled cancer fear every cough, every sore throat, every odd feeling. We second guess the normalcy life may bring and place cancer in the forefront of our minds every time we have a funny feeling in the place that cancer took hold in the body. We especially allow "scanxiety" to take over our minds every three months, when a PET or CT scan glows red on the calendar. 

MD Anderson waiting room.

Because even if we lived life normally for a number months after Jason's radiation treatments - a treatment that seemed to work, a treatment that showed quite positive results and reduced the size and activity of the lymph node in his lung, a treatment that gave us almost 15 months of life without cancer treatments, when Jason's PET scans started to show increased activity we actually felt blindsided, kicked in the gut and undeniably heartbroken that cancer would dare return to this house, this family. 

Life was normal again for that time, almost a year and a half. Maddy had gone through one whole grade level and started another without a cancer treatment overshadowing her successes. We'd gone almost one whole school year where we had focused on her -she was loving second grade, we were working with a great allergist to desensitize her peanut allergy, helping her with reading, and just loving her up. Finally focusing on just her. Now, as we headed into the spring, here I was walking into talk to her teacher again to discuss her dad's medical issues at home. How many teachers would that be? How many times would it be that we had to discuss how she might be affected by her dad's medical treatments?

This time, Jason had another spot on his lung. A lymph node again was burning brightly in his left lung, way up in a spot that was probably not, according to his oncologist, in an operative position. She allowed us, though, to begin talking to a surgeon in the area to get his opinion, which we did. And immediately after that, we sought out a second opinion because we did not like the answer we heard nor the options we had been given - to simply live with cancer was not something we wanted for Jason and given that at a very young 35 years old with a 7 year old at home the risks were too great. 

View from the top.

So, we headed to U of M and Dr. Chin for his opinion, where we saw his PA and nurse practitioner who explained to us the procedure - Jason's history & scans would be considered and information would all be given to Dr. Chin and their team would present Jason's case to the tumor board, who'd then determine if Jason would be a good candidate for surgery. At this point we all knew that Jason's tumor was in an odd position, close to the center of his lung, and in order to remove the tumor, the entire left lung would need to be removed. And we were hoping for surgery.

Jason was three months into his third round of chemotherapy, he'd had radiation, he'd already had two lung surgeries, and had started out this whole nightmare with colon surgery. We knew that even if the chemo shrunk the new tumor, there was a very good possibility that it could spread from this lymph node if it hadn't already. He was responding very well from the current chemotherapy - the tumor had shrunk some, but as we soon found out, tumors respond the best in the first three months of chemo, more shrinkage wasn't likely. Surgery was the best option. 

Weeks later, Dr. Chin's PA called to let us know that though he wasn't opposed to surgery entirely, he didn't feel he should do the surgery, and recommended we see who he considered the best - Dr. Swisher out of MD Anderson. From that, our local oncologist got the ball rolling, and by July we were sitting in Dr. Swisher's office hoping and praying he'd take Jason on as a patient. 

Removing this lung would be the chance we had at removing this cancer from our lives forever. Our opportunity for getting normal life back. We learned, of course, that for us, this life is our normal for now. And living with cancer may just be what we have to do for a while, but we also know we sure as hell don't plan to do it forever.