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!

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!