It’s a marathon, y’all
Hi friends, it’s me, Jessica. It’s been a while since we chatted, and that’s been mostly because things were going well (and busy) and a little because things got rough. This journey is a marathon, and frankly, I’ve never been much of a runner. And especially not long distances. If I were a runner, I suspect I’d be a sprinter. But the monotony of running a race that seems to go on forever and ever is not my thing. Yet, here I am, jogging along and winded because I’m in this marathon, whether I like it or not.
I haven’t given a health update since last August – and a lot has happened since then. Most importantly, I had a scan in September that showed “no evidence of disease” (NED) and confirmed that the chemo, mastectomy and radiation had done their job. Praise be to God for those glorious results! In October I received my last Herceptin infusion and I began to get back to the old me – cooking and parties and holidays, oh my! The fourth quarter of 2018 was amazing. I soaked up every precious moment with my family, went all-out on Halloween, and Thanksgiving, and Berkley’s birthday, and Christmas. We made so many sweet memories and those months were pure magic for me.
In January, however, I had to hop off cloud 9, put my big girl panties on and brace for another battle. I started a new drug (Nerlynx) aimed at preventing a cancer recurrence. I was warned by my doctor and a newfound Facebook support group to prepare for the worst. This med attacks the GI tract and its number one side effect is pretty awful “D”. So I did what I do best, I concocted a plan to do everything within my power to minimize the side effects and prevent any terribly embarrassing situations. I started my meds on January 1st, and my plan was as follows: drink at least 64 ozs of water each day, change my diet to remove virtually all fiber, start taking probiotics, work from home, try not to leave the house and say a lot of prayers that my body would tolerate this medicine well. I looked ahead at what had the makings to be a gloomy time. But gloomy isn’t for me, so I changed my perspective and reframed the situation. I would be stuck in the house for what I estimated would be a month as my body adjusted to this necessary toxin. But instead of focusing on being stuck, I focused on what things I would get to do while at home once undistracted by my typical busy, running-to-and-fro, and chaotic life. I made a list of the opportunities before me: more time for prayer and gratitude, more time to hang at home with my family, more time to cook and bake, more time to tackle all the “one day” organization projects (for the record, Marie Kondo would be proud!). I was able to keep a positive attitude, learned to manage most of my side effects, and after just shy of a month, felt confident that I could leave the house. My doctor, while thrilled at the measures I was taking and my overall tolerance to the meds, was less than thrilled at the litany of mouth sores I was coping with (10 at one point), and my sudden weight loss. A restrictive diet, a reduced appetite and canker sores that I swear came from the devil himself meant that little ole me lost over 12% of my body weight. At my lowest, I was 95 lbs soaking wet, and even now am only a few pounds over that. He reduced my dose from the recommended 6 pills down to 5, and while I had initial concern over a potential reduction in protection, he made me comfortable with the plan. I’m happy to say that on 5 pills, I’ve been able to stop losing weight, reduce the number of mouth sores, and slowly, return to a normal un-restricted diet. I don’t think I have ever been so stinking happy to eat a salad! But this drug wasn’t the only post-cancer challenge I had to clear this year – the next giant was reconstruction.
Whether or not to have reconstructive surgery was not a hard decision to me. Early on in my diagnosis, it became little more than a bullet point on the to-do list of what I needed to do to get to the other side of cancer. I gave it no more thought than a routine task on a typical to-do list because it was a no-brainer to me… do chemo, have my breasts removed, do radiation, take recurrence prevention drugs and get new boobs. I’ve even looked at this step as the “prize” at the end of the journey. I wasn’t born well endowed and the thought of an insurance-covered, guilt-free boob job seemed like a decent ribbon for my efforts. And while I’m thankful to have not wasted any energy on worrying about this step, fearing the surgery (or subsequent recovery), holy crap I was ignorant. The procedure I had is called a latissimus dorsi flap reconstruction, where they removed muscle and skin from my back, reattached those muscles to my chest, constructed new “nipples” and placed tissue expanders aimed at stretching the new muscle and skin in preparation for a permanent implant. It resulted in a two-night hospital stay, two five-inch incisions on my back, two circular incisions on my front, muscles that were unnaturally cut and pulled and forcefully put into their new position. It left me with four drain tubes protruding from my sides, each hanging by a stitch, which was evident with practically every move. Those drains, for the record, are also straight from Satan. I had limited use of my arms and an extremely sore back due to the over-use of the remaining muscles that were left to carry the load. I would like to think I have a high pain tolerance, as I pretty well tolerated back labor, and three c-sections ,and multiple biopsies, and hundreds of needle sticks, and a mastectomy. But y’all, this one knocked me down. For the first time in my cancer journey I felt low and defeated and wanted to scream and cry “enough!” I had stayed positive and strong before because like, literally my life depended on it, but now, here I was suffering from an “elective” surgery and feeling more hopeless than I ever had before. I think it was partly the pain, partly the second home-confinement (but this time I couldn’t even be productive), partly the fatigue of an 18-month marathon, and partly the anger that this fight was my reality. It sucked. I mean, it seriously sucked. But guys, I made it through. I slowly recovered, I weaned myself off pain pills, got out of my recliner, went back to work, resumed normal activities and (with God’s help) lifted myself from that dark place, back to me. Out from the valley, I am glad I did it. I feel like a part of me has been restored, and for that I am thankful. Having a chest that is no longer concave has given me a shot of confidence that I hadn’t realized I was lacking. I still have one surgery left this summer (to get my permanent implants), but it is out-patient with no drain tubes, and so it should pale in comparison to this last one.
Y’all, cancer doesn’t end with NED. It just doesn’t. If you’ve been through it you understand, but if you haven’t, it can be easy to think a clear scan means it’s over. Even after the treatments and surgeries, cancer is there in the scars you see each morning, it’s there in the decade of daily pills to keep the beast at bay, and it’s the ever-present fear that it will return. And even though, through prayer, I have been able to keep that fear from over-powering my life, it’s still there. It’s like a wolf hiding, just beyond the trees. I can hear him howling. And while it doesn’t stop me from finishing my race, I always know he’s near.
I do not know how people conquer cancer without Jesus. I really don’t. Because without Him, I would have been devoured. But because of Him and His promises, I am not a slave to fear. Thank you, Jesus, that fear does not own me.
Perfect loves casts out fear – 1 John 4:18
At eight weeks post-surgery, I’m back to my old pace and being all “extra” again (a term I’ve come to love and embrace). I’m energized and as cliché as it may sound, I don’t feel like I’m simply surviving – I’m thriving. I’m able to dream again because when I look out at the future, I now see myself in it. I feel called to love big, live my best life and use my God-given talents. I feel the tug to start writing again, to stretch myself in all that I do, to go all-in, and to give Him all the glory. There’s great stuff ahead y’all.
I’m so happy for you and thank God for all his care of you. You are an amazing and inspiring lady. I’m looking forward to seeing you next year and having Berkleigh in my class . ❤
Thank you, Diane!! We are excited to be back at the preschool too! 🙂
You are an amazing witness to what God can and will do! My family is blessed to call you and your family “friends “. Praise God from whom all blessings flow! Thank you for sharing your journey.
Thank you Kay!!
I remember hearing my friend Pam describe the reconstruction procedure and you could hear the pain in her voice just talking about it. But, I’m glad it’s behind you and that you are back to feeling like you. You are an example of courage and strength for others to see. Love you!
Thank you Rene! After I returned to work from my surgery one of my colleagues told me, that while he didn’t want to tell me before surgery, a friend of his said this reconstruction was the hardest part of her whole treatment too. But we have made it through! Thank you for all of your support!!
Hi Jessica. I am following your blog because I am a triple positive breast cancer patient diagnosed about the same time as you. I am also suffering thru Nerlynx right now. You are a great writer and really inspiring. Kathy
Hi Kathy! I’m sorry you’re going through all of this too! Thank you for reaching out! Let me know if you ever need someone to commiserate over Nerlynx with you or compare Imodium strategies! 😉 Best, Jessica