December of 2011 started off as quite a whirlwind. Shortly after sending my husband Matt off to his deployment in Afghanistan, I had returned home to Pennsylvania, to live with my parents and plan our June wedding celebration. I say “celebration” because, thank God, my husband and I had actually been married in Alaska prior to his departure. Our marriage had provided me with a luxury that I hadn’t had access to before, medical insurance.
In the midst of picking between roses or lilies, pinks or purples, and chocolate or red velvet cake, my stomach was demanding my attention on some issues. For about a year or so, I had been going to the bathroom a bit more than average. Most often it was chalked up to “stress or nerves”, as I was notorious in our family for being anxious and stressed. My mother took closer notice of these issues and urged me to go to the doctor.
January of 2012 I made the first of what would prove to be many trips to the doctor. Fortunately, I was blessed to have a very compassionate, thorough doctor who made all of the “uncomfortable topics” easy to discuss I was taking Imodium as needed to control the issues. However, I was taking more than I thought my doctor had anticipated. Thankfully, against all my arguing, my doctor insisted on a colonoscopy a few days later.
I was so blessed to have my mother able to drive me to the hospital and home, she did all she could to calm me. I remember awakening from that procedure, to my worst nightmare. The doctor explained that the test showed that my colon was “carpeted” with polyps and there were a few that looked like colon cancer. He asked my mom and I repeatedly whether I had family members with colon cancer, and seemed almost unbelieving when we told him none of our family had any cancer. He went on to explain some rare disease that we had never heard of, FAP, and gave us a list of surgeons I could get in touch with. It felt as though someone had punched me in the stomach, and then ripped all of my insides out. Thank God my mom was there beside me, had she not been, I think I may have just shattered into a million pieces.
A call to my three older brothers was necessary. I needed to explain this unknown nightmare knocking on our family’s door, and just what implications it may have on them and their family. Next, I called my father-in-law. He told me something that hung with me throughout this whole journey. What the doctors give you are stats and odds; we are going to beat the odds. At this point, I decided not to discuss this topic with my husband until he returned from his current deployment. I’m not sure which was harder, knowing that cancer was lingering in the back of my mind, or not being able to tell my very best friend, that my world was crashing down around me.
I ended up in the office of Dr. Medich at UPMC, who simply put, gave me peace about this whole situation for the first time. I would need to have my entire colon removed. He said I would live to be a beautiful old wife. Most importantly, he told me I could put off surgery for a few weeks, allowing me to have my wedding celebration with my husband in June.
Fortunately, June brought my husband home for leave as planned, and we were able to have our wedding. Somehow, we were able to put this darkness out of our minds for the day, and truly enjoy the happiest, most beautiful day of my life. A short week later, Matt and I were off to Pittsburgh for the first step of my J pouch procedure. Turns out the surgery took much longer than anticipated, and I was blessed with an extraordinary skilled surgeon who meticulously ensured the surgery was a success.
I am confident I will never forget the look on my husband’s face as he entered my room, it is forever burned into my heart. Unbeknownst to her, one of the hospital staff had revealed my diagnosis to him, before I had been informed. He revealed those three words “You have cancer”, and our world shattered. The surgeon came by to confirm that the pathology report had come back and I had Stage III colon cancer. He said I would most likely need 6 months of chemo and that it was standard procedure to keep the ileostomy until treatment was completed. To add insult to injury, Matt was scheduled to fly out the very next day to return to his deployment for another 6 months.
There is no better way to describe the next few weeks than a complete numb blur. I felt as though I had just received a death sentence, and I had no interest in anything. My family, both those on my side as well as my husband’s was nothing short of amazing and instrumental during this time. Even though I had checked out, they relentlessly showed me that they had not. I was scheduled to meet with one oncologist at UPMC at the end of the week, and also an oncologist at Johns Hopkins in Baltimore a few days later. Two days before my appointments, I was admitted for being severely dehydrated. A new doctor explained to me the very important lesson of not just drinking water, that once in awhile our body needs something more to “grab” onto instead of just flushing everything out. Lesson noted, in fact at times I think I am borderline OCD about hydration these days.
Once again, my family came to my aid. Words cannot explain how much they did for me at these appointments; asking the questions I couldn’t think of, presenting the research I couldn’t bring myself to look at yet, and documenting every response made from the doctor. I finally decided to undergo my treatment at Johns Hopkins in Baltimore, and avoiding the radiation that they did not feel was necessary at the time, hopefully ensuring the reversal of my j pouch. I would relocate to Annapolis, and with the help of family would complete the 6 months of chemotherapy while Matt was gone.
I’ve always heard to look for the silver lining in things, and the next step in the journey was certainly that. There is some speculation that the chemo regimen proposed for me can affect a women’s fertility. My oncologist, also a young woman, recognized this concern and automatically put me in contact with a fertility specialist at another campus. With Matt being gone still, my brother volunteered to go to this appointment with me and make sure I covered all the difficult questions. If this is not awkward for an older brother I don’t know what it is, but there he was for me, supportive and unwavering. After a quick exam, the doctor concluded I was in the right hormonal phase that I could quickly go through IVF procedures and freeze embryos before beginning treatment. After this appointment, I had one week to make a decision about this and if I waited any longer than that, my window was lost.
In addition to the weight of making this huge decision without my husband, was also the financial aspect of the matter. IVF, or any fertility options are not cheap, especially when insurance does not cover them, such as in my case. Luckily, the doctor had suggested a financial assistance program. Fertile Hope, offered through LiveStrong. I was accepted by the program for financial assistance and had decided to move forward. My mom and I moved down to Annapolis and stayed with an aunt and uncle for a few weeks to begin the IVF procedures. Those few weeks involved lots of administering lots of hormone shots, as well as many trips to the doctors for updates. Towards the end of this, with the assistance of a few helpful doctors, we were able to get Matt home for the final procedure, and we were able to freeze embryos for down the road.
The following week, I started my first treatment. Once again I had my entire team by my side. In fact, it was at this point that my brother decided we needed “Team Meghan” shirts to wear to our appointments together. The unified front that came from support like that is no doubt what got me through that treatment that day, as well as the 11 others to follow. I felt as though I was never fighting alone in those moments. We had blue shirts made up with the infinity symbol as well as the cross to symbolize the quote of “I Refuse to Sink”, as well as our motto, which was “The storms of our life prove the strength of our anchor.” I had come across this somewhere after my diagnosis and it resonated with me. Indeed this was a huge storm in my life, but it would be used to show just how huge my God was.
Fortunately for me, I was able to make it through my twelve treatments without any major problems. There were a few hiccups along the way; a few delayed treatments because of low counts, the beloved side effect of tingling toes and fingers due to the neuropathy, and a couple trips to the ER for fevers that thankfully resolved themselves without requiring an admission.
In February of 2013 I had finished my final session of chemotherapy. Praise God the CT scans showed that everything was clear and I was then moved to the surveillance schedule of CT scans and blood work once every 3 months to make sure there was no reoccurrence. What an absolutely amazing feeling! I knew full well I was not out of the woods yet, but a large part of the battle was behind me. The next hurdle would be my reversal of my j-pouch surgery. My surgeon and I decided it would be best to give my body some time to heal, so I had my surgery the first week in March.
While this surgery paled in comparison of pain to the previous surgery, it presented many of it’s own challenges. Recovery basically entailed learning to eat all over again. Learning what my body could tolerate now, how it could tolerate things, and what just simply did not work. Unfortunately, there is a whole lot of “gray” area when it comes to this with the j-pouch. Much like no two people are the same, no two j-pouches are the same, and there are no written rules for what work. It is most certainly a trial and error, that to be honest still throws me some curve balls today. However, overall it was a successful surgery and many times no one can even tell I had it done.
My journey is not over I know this. But there is light ahead. Although this started out as a nightmare, I have received many blessings along the way and I only hope I can share this comfort with those that are in that initial petrifying moment. Just a few weeks ago I had my 9 month surveillance scans that showed the cancer is still gone, and I also found out that FAP has not affected my thyroid! I was also cleared at this point for my husband and I to begin to try having a family. I know many people, both those affected with FAP or not, that disagree with this decision, and this is the best way I know how to explain my standing.
I’ve heard it said about FAP quite a few times, “it’s when my genes don’t know how to behave”, and while I believe that, I also believe wholeheartedly that the God that created my genes can certainly tell them when to behave, and I know he will not give me anything I cannot handle.
Yes, I do have FAP and I will never deny or neglect that, but I refuse to let it define me.