Thursday, July 31, 2014

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. 

Friday, April 11, 2014

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.

Wednesday, April 9, 2014

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. 

Saturday, August 17, 2013

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.

Saturday, August 3, 2013

The Cancer Club

At some point when Jason was going through the first round of chemotherapy, I met a woman whose husband had been battling cancer for five years. Five years, I thought, that is incredible. And at that time, I actually thought, Wow, I am so glad that Jason will be done after this round. So naïve. I had no idea what we were up against. The power cancer has over the body, and the mind.

Our little tumor, the one that had stowed away up in Jason’s lung for we don’t know how long had to be taken care of – the sooner the better. Dr. Rapson had allowed us the time to take our vacation (our biggest and only real vacation ever was just like Disney told us it would be – a Dream) and the little bugger had been biopsied. It was clear that the tumor was not new disease but the same old colon cancer nestling itself further into Jason’s body, so we were ready for the next steps – surgery. We were set up with a thoracic surgeon and we were ready to fight – again.

Surgery was scheduled for the end of August. Once again, Maddy and I were starting our school year with Jason under some sort of medical duress.  Just the year before Maddy had started preschool and a few weeks later Jason began chemotherapy. This year it would be her first year of kindergarten and her Daddy would be recovering from lung surgery. As a teacher, I know how the stress of a child’s home life can be a concern, so it was important for me to speak with her teacher about the happenings at home even though we, thankfully, had so much support for her. As I explained to her teacher and classroom aid the events of our life in the last year, I started out smooth, then blubbered through the tears in the last half of my account as they hugged me and let me know that they would be sure to tell me if Maddy acted strangely, seemed needy, or odd in any way. With all of our supports in place, were ready to get this show on the road!
First lung surgery, 2010. 

So we went. To surgery. One more time. Again our family, some friends, and our pastor, too, found ourselves huddled together in the hospital waiting room - praying, making small talk, pacing, shedding quiet tears -  after Jason was sent behind the scenes to have the lower left lobe of his lung resected in order for the malignant tumor and margins to be removed. Hours later he emerged, the carcinoma gone, but a chest tube attached to his body that wouldn't be removed for days as it would need to continue to drain fluids & aid in the healing process. And Jason in a lot of pain would continue to work toward healing for days. 

The challenges for Jason in the days ahead were many, most not even up to him to get over, but for his body to work through. The tube attached to his body and that followed his every move was not easy to maneuver, not easy to work with and sleeping was near impossible. At the same rate, he wanted to get home, so he worked hard to take his walks, work with the nurses and techs, and do what needed to be done to rebuild his health. After close to a week, the chest tube finally came out and he was released, even though his body held a slight fever earlier in the day. Little did we know, that fever was a sign, possibly one that said we should have stayed. Certainly a forewarning, we now know that for certain. 

In the days ahead there were some bright spots for Jason. Being home provided him with a few opportunities that he wouldn't have had if he’d been at work or in the hospital. The week ahead was Maddy’s very first day of kindergarten and he was able to be a part of that - he got to see her at her first day of school, off the bus and hear her stories all week – quite needed after a week in the hospital. But, as the week drew on, it became evident he wasn't feeling any better since his surgery, in fact he was worsening, every day. He had developed a cough, a deep pneumonia – like cough that was worrisome and he complained of a pain in his chest that simply wouldn't go away, no matter how much he tried. Worry set in for both of us that something had gone terribly wrong with Jason’s recovery.

Off the bus for the first time, 2010.
Finally, we decided to go to the ER late one evening. We sat there all night while they ran some tests, and was finally admitted into the hospital. Sure enough, something was wrong. And as the night wore on, Jason wilted. His health seemed to get worse as the minutes ticked on. In fact, he barely remembers the night at all. The time we spent in the ER, he was in and out of consciousness, and I was in and out of my mind. Jason’s lung, the one that was operated on less than a week before had a post-op complication - an abscess. At the time of admittance nobody would tell us, maybe they didn't know, what the abscess was -  just that he would need to undergo a second incision to drain it. Another surgery.

Eventually Jason perked from the fluids and the meds, some of his family gathered with me and we prepared ourselves for yet another round of prayer and meditation to get him through surgery. And we did. And he did. And here he was again with a chest tube in, constantly waiting for the meds to kick in & get the right pain medication balance, and hoping to get home so he could move on with his life. Unfortunately, this stint in the hospital was not as smooth as the first, if you could say the first lung surgery was smooth – his pain management was a disaster, requiring much more this time around given that this was his second surgery in less than a month, and also requiring a patient advocate to help with many issues that were endured. Our daughter, just five years old at the time, though very well taken care of with her grandparents and family friend was having a really hard time with us being gone and her daddy in the hospital again and we both were feeling saddened over it all. It was a terrible time for us.

Eventually the doctors let us in on the secret - Jason had two types of bacterial infections causing the abscess in his lung - Staphylococcus & Streptococcus, though how he got them we will never know. Due to the nature of the infections, he was immediately started on heavy antibiotics in the hospital and was required to continue the medications at home. After a week of pain and discomfort and Jason was finally discharged, a visiting nurse came to the house to administer the first doses and to show me how to manage the antibiotics intravenously through Jason’s port - one of the most nerve-wracking things I have ever done! So each day for two weeks I ran home after work to get there in time to get those IV antibiotics in his system in time. What a time that was, another blip in our cancer story for sure. 

First day of kindergarten, 2010. 
I had no idea when I heard about that woman and her husband where our story would take us, but never could I imagine it would be the chapter I just retold. Who could envision these painful details for themselves or their loved ones? Unfortunately, after five years of battling cancer, her husband lost his fight with cancer and boy do I ever think of them often - pray for both of them and wish it wasn't so. Cancer not only has a power over the body, but the mind as well and I know what they must have gone through in those years. Cancer patients and those that care for them belong to a unique club that nobody wants to be admitted into, and those that are in it understand each other and their adversities very well.  Unfortunately this club isn't one you apply to, one you don’t ever ask to be a part of and once you are in, you constantly pray that you are somehow one of the lucky ones, and for others in it, as well. Because prayers don’t run short in this club.

Unfortunately, our story still doesn't end here. Like that woman and her husband, our diagnosis was just the start of a long journey. And we are still praying to get out of this club.

Saturday, July 13, 2013

Here We Go Again

Our first & only real vacation together as a family! 
When chemotherapy came to an end in late winter of 2010, we felt that we could breathe again. Winter was rough, as I’d said in my last post. We took each chemo cycle one at a time, bit by bit and just as we got it figured out, just as Jason understood how to manage those symptoms – we were just about finished. That was fine with us, we couldn't wait to have the whole experience behind us, and move on with our lives. Little did we know, it wasn't done with us – as much as we wanted to move on, we had more work to do.

Chemo ended close to Jason’s birthday that year, so for me it meant a lot that we had him done with chemo and that well, we had him. Even when Jason said to me, “I’m not going to die from cancer,” worry tore through me each time I saw him in those chemo chairs tied up to those machines, or even in the happy times, playing with Maddy – wondering every time just how many of those times we had left. My mind did go there from time to time and it killed me to think about what would happen to Maddy, to us, to me - without him. My heart still breaks when I think about it. And I’ll be honest - it still goes there from time to time. Unfortunately.

En route to Disney - we took the long way!
As people do when they “hit it big,” we wanted to do something big. People asked us, “Now that you've had cancer, what are you going to do?” How else can you answer that - “We’re going to Disney World!” And so we booked a trip, then scrimped, and saved and planned to take Maddy for her 5th birthday, as a big surprise to her and all in celebration for “getting over” the worst year of our lives. Something we all deserved. We felt like we’d won the lotto and we had so much ahead of us, much to rejoice!

It was a wonderful spring. We spent time with family and friends and Jason let his hair grow back. We involved ourselves in church, in the community, and in having fun… and we planned for that Disney trip. Jason was able to go to work symptom free for a while, and I was able to end the school year without the stress of making sub plans every other week in preparation for his treatments or without worry or the pressure of having a sick husband at home to take care, or so I thought.

So glad we had these memories. 
Fast forward to the very last day of my school year, 2010. Jason called with results from the most recent PET scan that had been ordered from Dr. Rapson. The PET scan covered his whole body from neck down - a small bit of activity had been found in his left lower lobe of his lung. And to think I thought we were all done with this cancer thing.  I literally quit talking for a moment.  What could I say? Even as I type this it takes me back to that moment in time. I can see exactly where I am, exactly what was happening as if I am outside of my body. My friend Tanya and I share a wall between our classrooms that collapses. That day it was separated. I remember getting off the phone and avoiding her because I simply didn't know what to say, didn't know how to say anything just yet. Tanya and I rarely quit talking.

Eventually I had to speak and tell. Telling made it real. Real made it awful.

The next few weeks Jason may as well have been abducted by aliens, he was poked and prodded so many times. His next step was a biopsy of the lung and then a number of other scans and tests. It was necessary to determine where that little spot came from – was it metastasized from the colon cancer or was it newly developed lung cancer?  Dr. Rapson wanted an MRI of his brain to check for possible tumors there – a scary thought to be sure, and a few other tests to be certain he was clean, that there were no other tumors anywhere else in his body.

I've said it before and I’ll say it again – the wait that comes with cancer is dreadful! At this time we were waiting for so much at one time. We hoped that the cancer wasn't a new one, for if it was it seemed anything was possible. We prayed that there was nothing growing in his brain (I tried to tell them the answer to that one!) and we had faith that nothing new was in his colon or surrounding organs. But still, the wait was insane!

Involving ourselves in everything!
In my life, only a few times have I melted to the floor in sobbing tears. Because of Jason’s illness and this life we've been living, I've shed many tears – plenty of times I have just cried and cried. I've cried silently, I've blubbered tears of stress, I have wept with Maddy, with Jason, with family and friends, and plenty of times I've suddenly burst into tears - letdown from it all, I suppose. I have held many back as I have cared for him and cared for Maddy. It is amazing how a person is able to wipe tears away when a job needs to get done, saving them for later. But when Jason called me to tell me that his brain was clear, there were no tumors, I got off the phone with him and sobbed. There was a weight on my shoulders that when I sat down and let it out – it all came out, in great, big sobbing waves of tears. It was such a relief!

Within days we found out that Jason’s tumor was quite small, barely able to even have biopsied. Nevertheless, it was and it was cancer. The results were in his favor as far as cancer goes, I suppose. As it turns out the colon cancer had metastasized and made its way up to his lung. Darn cancer. The other good news was there were no other tumors to be found. And something had to be done and the quicker the better. 

Once again our life would be turned upside down all thanks to cancer.

Major surgery number 2… here we go again.

Sunday, July 7, 2013

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!