Follow up.

Wouldn’t it be great if I could just type the words, “and she lived happily ever after, for a very long time. The end.” and that be true. My eyes even tear up at the idea of this as my reality. I’m stubbornly clinging to this hope but unfortunately, it isn’t true yet.

You may remember, I said in a previous post that cancer has always felt like a bad dream so cancer free was even more foreign because the bad dream seemed to have resolved but I hadn’t woken up. Since my surgery and drawn out recovery, I’ve been practicing as much mental discipline as I could muster into believing I was cured and wouldn’t have any more cancer. I decided the millimeter lung nodules were not going to be cancer and resigned not to give them any of my energy by worrying about them. With this mindset, I boldly strode into a CT scan three weeks ago, not worried about finding anything because I was determined my hope and my mental commitment to being cancer free would triumph. My mom was worried though. It was my first scan after surgery. My first scan after four months with no chemo, the longest I’d been off chemo since getting diagnosed a year and a half ago. Four months is a perfect window for new cancer to grow big enough to show up. I drank my cleaning fluid contrast and got my CT scan like clockwork. The first of five monitoring scans that would happen over the next two years.

Peter Pan Donuts in Brooklyn
Wearing my favorite winter garb.
Local brews and garlic fries.

The next day, I left for a long overdue visit to NYC to visit my best friend and her seven month old daughter that I had never met. After two days of my favorite foods, drinks and NYC activities, I text my oncologist for results. Reading her reply was like a punch in the gut. Some suspicious nodules had grown in my lung. They weren’t “new” nodules. At the back of my mind there had been two slow growing lung nodules that in my crusade to stay cancer free I had thought dismissively about. Not for the first time, nor I’m sure for the last, my head and heart spiraled. I had skipped right over the “what if’s” and straight into hopelessness. My poor friends, suddenly I was distracted and melancholy and crying in the hallway outside their apartment late at night talking on the phone to my mom. Things got dark folks. I was sure I was going to have to postpone my life all over again. Not go back to work, stop coaching, more heavy dose chemo, cancel my upcoming vacation, constant nausea, another surgery, more pain, more hospitals, failed treatments, frustrated doctors, never be cancer free, be abandoned by God, everyone would give up, I would give up, the cancer would spread to my brain and then within five years I’d lose the fight and die.

This is the scary story that’s waiting in the shadows to capture my heart and force itself into my reality. I don’t understand how anyone can have cancer and not know Jesus. People always tell me how strong I am. Let me put those rumors to rest, guys, it’s not me. This depression, and fear, and pain, and shit circumstances are too much for me! He is the only one big enough to over power my scary story and say what’s true. I need to say it again, for myself, He has nothing but good intentions for me and no matter how dark my circumstances are it doesn’t change who He is or how much He loves me. I had this thought last weekend, maybe I’m going through this so that God can say, even in the most hopeless and darkest paths in life, He doesn’t just still loves us and want good things for us, but He is in it with us. If people who know Him and love Him never experienced this level of darkness could I say or believe that this isn’t too much for Him? Could I say with absolute assurance that He can walk through the worst life throws at you with you? Could I tell you I know that He wants to make the most depressing and fearful things in my life something good? I think sometimes people have horrible things happen so that we can find out whether what God says about Himself is actually true. I can tell you with certainty, He is not a God of talk and empty promises. Everyone has their own version of my scary story, I just want to tell you there’s an alternative if you want it. I hope that you can see these things about God are really true when you look at the darkness of my life. By some miracle I can not only remain sane and happy but I can appear strong. Somehow I am always rescued from those dark thought spirals, though I never quite now how it happens.

My oncologist ordered a PET scan straight away. She wasn’t discouraged like I was by these lung nodules. Yes, they are chemo resistant. Meaning, the 9 months of chemo I had, which had shrunk and killed all my other cancer, hadn’t gotten rid of these nodules. If you look at my previous scans you can see these nodules, they were only one millimeter, but they were there. Now they are four and five millimeters. Last week I was injected with that damn radioactive isotope again. Sure enough, the two nodules glowed, positive for cancer. Next step, meeting with my radiation oncologist to discuss radiation. Let’s see how this goes and what the implications will be.

This is the canister the radioactive isotope vial comes in to reduce radioactive exposure. Very science fiction.

The fight still rages, guys, I’m so grateful you’re in it with me!

Narcotic Bowel Syndrome.

Recovery after this most recent surgery looks a little different. In a good way, mostly. I mean, I was in the hospital for twenty nine days the first time, this most recent surgery I was only hospitalized for six days. Where they went through the same incision, sternum to pubic bone, and then some, all those rib and thoracic incisions, I didn’t need to start chemo and was much stronger afterwards. I could walk, after all, more than i can say for after my first surgery. Yes, I had another infection after the second surgery and it looked like I would die again, but I didn’t go septic like after the first surgery. I wish I could make a table breaking down how similar and different the surgeries were. The main take away is I came out of the second surgery better! I really wanted to use my recovery after the first surgery as a standard for my current recovery. I can’t.

My colostomy (abdominal poop bag) after the first surgery was horrendous! It was also very convenient. I didn’t give my bowel movements a thought. As long as I had an extra bag with me, in the end I was good to go. I had pool days, beach days, camping trips, and all the summer fun with that thing. Most of my closest friends didn’t even know I had it.

Now having your intestines reconnected is an altogether different experience. How much attention do I give that urgency to poop? Am I going to poop my pants? Is this just a false alarm? This cramping, am I going to have a bowel movement or not? Turns out when you take your intestines out of your body, they get a little freaked out, stop working, paralysis for a while. By the time I was discharged from the hospital they were moving again but not in a synchronized manner. They were sporadic and out of sync, part of me felt constipated and the other part felt like diarrhea. It was uncomfortable to say the least.

After two months of severe cramping, feeling not that my intestines alone were cramping but sometimes my pelvic floor and low back, and then there was that sharp swallowed a knife pain too. I was mildly concerned. I mean, after two months, my prior experience and medical knowledge told me things are mostly healed, fascia, muscles, intestines… The fact that I had days where I was spending all my time on the couch or limping around the house because of abdominal pain was definitely unnerving. I had a follow up with my surgeon to look at some open wounds I had along my incision and at my mothers prompting I described my frequent “discomfort”. “I’m sure it’s my diet, Mom! Let’s not make a deal out of nothing!” The resident I described my symptoms to was like, “yeah … that pain is abnormal for this time frame.” I know I don’t have an obstruction because I’m going three to five times a day. “I’m sure it’s diet.” I’m always very dismissive of my pain and problems (part of why I’m in this mess to begin with). Then Dr. Reeves, my angelic surgeon came in. He asked some more probing question about my symptoms and my meds. “Sounds to me like you have Narcotic Bowel Syndrome. You’re intestines are going through their own set of withdrawals. You need to slow down your tapering of pain drugs, I wouldn’t go completely off them for another two months.” I had been planning on going off cold turkey in like a week. “Oh no! Don’t do that! You’ll be miserable!” Well ok Dr. Reeves!

I can function normally. As long as I can allow my intestines their own way, three to five times a day. As long as I can stretch out on a couch for a couple hours between activities. As long as I take at least a quarter of a pill of Norco three time a day. (I’ve been tapering. When i was discharged from the hospital I was taking one pill every four hours, setting alarms in the middle of the night so I didn’t wake up with pain.) Some days my intestines are noooooooot happy, often it’s a day or two after I cut down my dose or forget and skip a dose. It’s debilitating at times. But I look good.

Most people just want you to look good and function well. So I do. Most people are really happy with me, not just for me. But I hate withdrawals. I hate the anxiety and hot flashes and aching mind gnawing pain of withdrawals. My intestines hate it worse. Poor guys have been through enough, now this? It’s alright. Time passes and so will this.

I’m still cancer free! I’ve had blood work done and my tumor markers are still really low and my labs are normal. I’m trying to stand in the belief that the cancer is gone and will stay gone. Another CT scan and follow up in the works! Still praying and fighting!!!