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. 

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.