Let Freedom Ring

It didn’t take me too long to figure out cancer is a disease of the body, mind and spirit.  I know that totally sounds like something that would be on a cheesy cancer poster taped to the wall of a bathroom at the cancer center, but it’s true.  From the onset, Chip has struggled with the mental aspect of having cancer, but it wasn’t until we landed in the hospital seven weeks ago, for emergency surgery to drain the fluid from his heart and lungs, that cancer truly invaded Chip’s spirit and as a result invaded mine.

When we learned his smart chemo, Xalkori, had run its course and was no longer effective in combating his cancer, it just floored us.  I had just started back to work the week before, Chip was feeling well, and for the most part, we had settled into a good little routine in our “new normal” life with cancer and as a family of four.  Suddenly, we were not only off the rails, but we were directionless.  All of the positive thinking, prayers, organic green juice and quinoa in the world can’t stack up against a rare and aggressive form of cancer like ours, so to literally be off chemo combined with the added uncertainty of what the next steps might be was debilitating.  Our motto has always been to live with cancer and not die from it, but for a couple of weeks, we were dying from it.  Cancer had invaded our minds and spirit, and it had become bigger than us.

(FYI, I would really like to be able to use some motivational Patriots-pulling-themselves-back-together analogy here, but then I start to think of Tom Brady, which leads me to Uggs and then Gisele and how hot she looked in that Versace gown she wore back in 2008 to the Met Gala and then more recently to that picture of her I saw in People magazine rocking this little string bikini while wearing her like 4-day-old baby in an Ergo on the beach and how she’s all like “I am a breast-feeding woman, hear me roar” and clearly she must have her Lansinoh nursing pads custom-made in order to fit into that teeny tiny little top.  Anyway, I digress, and you see why a sports analogy is just impossible for me to pull off here.)

that’s the dress.

I couldn’t even write a blog post during that time, because I felt the need to be positive and let everyone know we were fine and going to be ok, but neither of us were certain about that, so it would have been insincere, which is not my style.  Finally, I just made the decision to screw it and write “Walking in Circles” and let everyone inside the overwhelming world we were living in, and I am so thankful I did.  I don’t know if it was the therapeutic release of the actual exercise of writing itself, or if it was that we no longer felt quite so alone, or if it was the fact you all then knew specifically what to pray for, but within days of that post going up, we both started feeling stronger and things started falling into place for us again.

I have now found a counselor that I really, really love who is helping me safely navigate all of this and allocate my time and energy more efficiently.  Oh, and yes, I eat a ton of fiber and take probiotics and no, I am not on any medication other than an occasional Xanax for anxiety.  I can assure you I am being watched like a hawk by Dr. D., my OB/GYN, and my therapist.  I have been described as being “super high functioning.”  I guess cancer is my alcohol.  I by no means mention that as a point of pride but only because so many of you have asked.

So much of my role in this revolves around management. On the surface, that involves the simple yet time-consuming management of our calendar of doctor’s appointments, visitors and out-of-town guests, and social activities, staying on top of insurance paperwork, paying medical bills, tracking all travel- and medical-related expenses, filling prescriptions, and coordinating travel for us.  Luckily, I am a scheduler by profession, so I can confidently execute all of these things.

On a deeper and much more complex level, I am also managing the mood and energy in our house for the sake of Chip and our kids, defining our boundaries while trying not to step on anyone’s toes, coordinating logistics for the kids that will ensure the maximum amount of stability and consistency in their lives, learning when to respectfully decline an offer to help while on the other hand, asking for help when needed.

Through counseling, Chip and I have both learned to differentiate what is out of our control (such as cancerous tumors growing inside his body, and others’ feelings and expectations) and what is in our control (such as the food we put into our bodies, how we spend our time and whom we spend it with, and most importantly, how we react and respond to our circumstances).

We are even about to start going to counseling together.  We have an incredibly strong marriage yet we are dealing with these really big things that not many our age have experience with, so we are seeking professional help in learning how to discuss this with our kids and each other.  We both so desperately want to handle everything the “right” way but there is no how-to book for something like this.  Perhaps I shall write it one day …

The kids are doing great.  Crosby is thankfully the happiest and easiest little baby.  About five weeks ago, she started sleeping through the night, which is a real game changer for me.  That happened the week my sister Melissa and her family were here, so she would like to take credit for that happening.  Crosby just smiles all of the time and is such a constant source of joy for us.  She was finally accepted into Joe’s daycare, so we are absolutely thrilled she will start there in June.

Joe loves his Cros and is really doing well.  Joe is a creature of habit and has always been one to thrive off structure and routine – no idea where he got that from – so at the advice of his pediatrician, his preschool teachers and our family therapist, we are keeping him enrolled in preschool where he attends every day, he is still made to eat his fruit and veggies with dinner, and he still has to take a bath and brush his teeth at night. We do talk to Joe about Daddy being sick but not on a daily basis, because there is no reason to instill a constant fear him. We always answer any questions he has, and we openly say the word cancer and discuss Chip’s doctor’s appointments in the house.  Chip’s medicine is out and visible in the kitchen. With Joe, we mainly focus on all of the things we can do to keep our bodies healthy or to feel better, such as get a good night’s sleep, eat strong, healthy foods, take medicine, exercise, and pray to God.  Every now and then, he will say he is sick too like Daddy, but we never really correct him, because all little boys want to be like their Daddy.  It does tug at your heartstrings to hear him say that though.  But more than anything, we have found that Joe seems far more affected by the revolving door of people in and out of our house, which is obviously a result of Chip’s illness, than he does the actual fact Chip is ill.

I will spare you the blow-by-blow of the last six weeks, but to say we are still riding an emotional roller coaster is an understatement.  We have gone from elation over identifying a trial at Fox Chase Cancer Center in Philadelphia and obtaining an interview and initial consultation there to being sent to the ER at Johns Hopkins on our way home from Philadelphia because a radiologist thought they detected a tear in Chip’s aorta to a bad EKG reading that prevented him from being able to start the trial to oh, no, wait, EKG is fine and we have been accepted into the trial to actually being on the trial drug and seeing an improvement in Chip’s energy level and cough for two weeks to a now two-week temporary suspension of the trial due to elevated liver enzyme levels.  Up and down, up and down, up and down we continue to go.

Despite the ever-changing roller coaster we are on, Chip is in a much stronger place mentally.  I am just so proud of him and even though I HATE he has cancer and we are going through this, it has truly been an honor for me to be beside him and watch him just pick himself back up over and over again.  It was so tough mentally being off chemo for almost five weeks.  Of course we both shudder at the thought of what happened inside his body during that time and to now again be back off chemo after only two short weeks of treatment, but neither of us dwell on it.  We just can’t.  It’s not a healthy place to reside.  AND, this is not in our control, so we have to let it go and not waste our time and energy focusing on it.

So many have graciously offered to babysit our kids, and we so appreciate all of those offers, but it’s just not always that simple.  For Joe especially, there is already so much change in our house: new baby, Mom and Dad are gone several nights out of the week, we are both in and out of work and still at various, local doctor’s appointments every week, grandparents or one of our siblings are almost always here, people are dropping food off and coming in, and friends are visiting on the weekends, so even though Daddy went to college with you or you have sat beside Momma at work for the last six years, that doesn’t mean Joe knows you and feels comfortable crawling in a car with you on a Saturday to go to the park or to your house.  That is tough for us, because we know he is in good hands and will be fine, but that is just one more different thing for him to handle.  I am actively working hard at cultivating my own little village with friends in my neighborhood, so I do have more emergency back-up options, but for the most part, I remain focused and diligent on consistency, consistency, consistency and keeping our home life as normal as possible for him.

The same goes with driving Chip to a doctor’s appointment.  We made a day-trip to Philadelphia two weeks ago for what was supposed to be a short 90-minute check-up, and BOOM, just like that, we are suddenly suspended from the trial and our entire schedule is off course.  On the four-hour drive home that day, I had my cancer “playbook” and calendar in the car with me, so I immediately started calling our local doctors, scheduling the appointments we needed and rearranging our travel plans, work schedules, travel for family and friends coming in, moving previously scheduled appointments for the kids, etc.  Again, it’s a good thing I am super-organized and a professional scheduler, because while the emotional aspect of the unpredictability of this disease floors me, I am used to rearranging everything on a dime, and that part of it never really rattles me.

As a control freak, I am slowly learning to let so many of the things out of my control go, and what a liberating feeling that is.  I remain focused on keeping Chip, our babies and myself both mentally and physically strong.  Besides, if we allow cancer to invade our minds, spirits, and home, then has it not already defeated us?  I refuse for cancer to rob us and our household of experiencing the joy in the mundane parts of our day-to-day life.

We head back to Philadelphia tomorrow for a bright and early appointment on Thursday morning.  With all fingers and toes crossed, Chip’s liver enzyme levels will be low enough for us to resume the trial but at a lower dosage this time.  It will then be another long 10-12 hour day filled with EKGs, blood draws, and me sitting in an uncomfortable chair, but I welcome it if that means we can get started back on the clinical trial.

I pray that once again, we will enjoy sustained mental rest and the freedom that comes with knowing we are actively fighting cancer.

– Sheila