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 5^th 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.

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!

Twists & Turns

Just before Jason's surgery. 

 When you share your life story, it is hard to determine just what to hold back and what to tell those around you, even those that want to listen. It’s been easy in sharing Maddy’s story, on my Maddy’s Seven Year Itch peanut desensitization page, because that one is easy. Our daughter has recently 'overcome' her peanut allergy that she’s had all of her life. She’s been insanely brave - to eat the very thing that was poison to her in order to trick her body into tolerating it. The whole process was completed with a board certified allergist and has been a blessing for our family, especially for her – no more worry of losing her to a peanut or cross-contamination with peanut butter! That story has been nothing short of miraculous, pretty easy to tell, really! Our cancer story, on the other hand has not been easy, a little more delicate and quite difficult to tell. It has been downright hard at times, actually. Right from the get-go it has been a difficult process – an emotional roller coaster with twists, turns, and lots of highs and lows -  with plenty of stops for maintenance, too!

The whirlwind of events after Jason’s colon resection surgery was unreal. The first thing we needed to do was find an oncologist that could help us create a plan for Jason’s wellness. The tumor that had invaded Jason’s body was a pretty rotten thing – about the size of a walnut, had invaded the colon wall, entered the surrounding lymph nodes, and as we would find out later - had spread to other organs in the body. This disease had not just attacked Jason’s colon; it attacked our life and we needed to prepare ourselves for a fight!

Dr. Carol Rapson of Red Cedar Oncology came highly recommended. We’d had some bad luck with doctors recently, so even as high as our hopes were for her, our expectations were low. We went in thinking and knowing that if we didn't like her or didn't like the plan, we’d walk away. Jason’s health is simply too important, our family too important, for us to mess around with incompetent doctors. Fortunately, though, that is not at all what we found there.

August 2009. 

Before this diagnosis, Jason and I finally felt that we had a few things in our life figured out – Maddy, nearing four years old, wanted a sibling and after unlocking the combination on some fertility issues, we were ready to expand our little family. We’d been in our careers for a number of years by that time and Jason was ready to try for a promotion. We were to the point in our lives, finally, that we could maybe start a few projects in our home and had even gotten a family dog just the previous year. We were settling into our lives. Cancer not only was disrupting that entirely but we didn't have a cancer plan - who does? Dr. Rapson looked at us and immediately understood what mattered to us and knew that we were concerned for our future.

Unfortunately, that plan had to include a few other surgeries, a number of other doctors and specialists and a lot of discussion. A lot of big discussions about the future of our family. Here’s where we start to get into those delicate details that may make people uncomfortable. Flashback to Dr. McKenna, ‘local surgeon extraordinaire.’ When we had gone to him we had great big hopes, obviously. He also had been recommended to us by both our family doctor and a family member who’d asked her friends for personal referrals. We felt comfortable with this move but also felt rushed as this tumor ate away at Jason’s colon. As I said in my last blog entry, this surgeon let us know about possible complications of the colon resection surgery during our consultation appointment. The only complications he spoke of were ones related to frequency and urgency in using the bathroom. I specifically asked him about complications of this surgery and he said that the only complications Jason would have were these, and then continued to speak of the surgery specifics. As we went in to the surgery less than a week later, we never considered the fact that we would need to think about the future of our family or that this particular surgery would or could alter that outcome.

As it turned out, Jason’s surgeon neglected to mention to us a fairly common complication of his colon resection surgery – nerve damage. I’ll spare you the specific details of what it means exactly for him, just know that Dr. McKenna’s slip up in the operating room, took away our chance to expand our little family naturally. This nerve damage never occurred to us. At. All. At this time, with everything else going on, it was another blow. Another dip on that roller coaster ride. There were so many slopes that this ride was turning my stomach more and more and more than anything, I just wanted to get off the ride.

June 2009 - Our little family!

The fact that Jason was about to begin chemotherapy meant that his reproductive health could be compromised anyway, that was clear, and as Dr. Rapson would suggest later, arrangements should be made in case his fertility became affected anyway, but Dr. McKenna created issues that made this a much more complicated, difficult, and a far more expensive situation. This surgeon, took something away from us much quicker than we anticipated and without letting us know any options before we could make plans. We set up a meeting with a urologist and another surgery was scheduled and completed. Again, we found our hopes, and options were not made clear and as I found out – after the surgery and much too late, our ‘bank’ is not as much as I’d hoped. Enough for a few rounds of in vitro fertilization, certainly not enough for artificial insemination – think test tube vs. turkey baster. Test tubes are much more expensive and take much more ‘bank’ than turkey basters and when you have no ‘bank,’ (either sperm or money), than your options are limited. Our roller coaster was looking to have far more downs than ups. 

At that point we had to let the ride keep moving,though,  even if it was a little shaky and simply not what we were expecting, Jason’s health, and the happiness of the child we had at home were of the utmost importance. So, we counted our blessings and we moved on; and we continue to count them each day as our journey, our roller coaster ride, continues. We knew that we needed to figure out the next step for his well-being and start chemotherapy. We would determine what was right for us and our family as life happened.  Little did we know that we would be hopping on and off this roller coaster ride a number of times in the next couple of years. That is the way living with cancer works, though. Heck, that is the way life works – it keeps surprising you, twists and turns and all!