Some of this might be recap, some new. Some I didn’t realize what was happening until months later. Everyday I’ve been off chemo still feels like a little more fog clears. It’s a blessing but sometimes it scares the shit out of me. Coming out of the rain makes you (or maybe just me) so thankful the bombardments have ended; but it also makes life REALLY REAL. Sometimes it’s easier living in the fog and the storm. You don’t have to think about much. Just bunker down and SURVIVE. But when it starts to clear; that’s the “oh crap” moment. 

Yes, thank God we survived! Thank God for all the blessings He provided in the storm! For His protection when it seemed dire. I’m still floored every time He shows up to prove medicine wrong. But then again, the “oh crap” moment. The moment the rains stops, the sun comes out, and you SEE all the debris you have to clean up. Survival is a blessing but the aftermath is often a bigger burden than the storm. Everything and everyone I neglected are still there, but it’s a hot mess, and this hot mess NEEDS me. “I NEED a break!!”, I cried and begged to God. At the time, my body was done and I knew it, the kids were having issues at home and school and needed a coherent mother, and my husband’s anxiety was painful to watch as he tried to hold everyone together while navigating a new career. I remember telling my pastor “I just want it all to STOP!” Years of health uncertainty and you’d think I’d learn... “If you want to hear God laugh, say your plans out loud.” (Deadwood 😍)

I suppose I’ll pick up in November; where my prior treatment plan finally exploded. For at least six months I had outrageously high blood pressure and a resting pulse of no lower than 120. I remember sleeping during one hospital stay and nurses busting in yelling, sirens going off, asking me “WHAT HAPPENED?!”— Chill ladies, I’m sleeping! Well my heart monitor kept going off as I was sleeping while my pulse was skyrocketing above 140+. After awhile, they just started ignoring the alarms, this was being accepted as my “new normal”. After a summer of seizures and an autumn of 30lbs of extra fluid floating around my body, something was clearly wrong. My heart was tacky, organs were failing, and I constantly felt like my own lungs were drowning me. They stabilized me, called it “chemo toxicity”, and sent me home with orders to quit chemo. Yes- I thought a respite was coming.

A week later, we met with my oncologist and agreed that chemo had, in fact, done an excellent job on all those pesky tumors. I was down to only 2 “spots” that were large enough to be considered tumors. This was fantastic and my doctor was so impressed. He’s my biggest cheerleader (probably sometimes a little too optimistic) and said he knew I’d make it. In fact, I’m so “strong and young” he assured me I could continue immunotherapy. If you know anyone or have kept up with oncology Keytruda is the new immunotherapy wonder drug for lung cancer. I’d been on it a year and a half, in addition to chemo, so we decided to let immunotherapy to continue its work and I returned to my routine in “the chair” every 3 weeks. I’d done this dance before. With time, the chemo was to fade from my system and I’d feel better. But I never felt better. Weeks went on and I went through the motions of “being off chemo” and “fakin it til I made it”. Driving restrictions were lifted so I didn’t have an “excuse” to not be involved. But while I was able to sit and drive a car, walking from the front door to the car was torture. The new year came, and Ben came down with the flu. The kid who is never sick was wiped out for a week. And it wiped me out caring for him but at the end of the day I was mentally thrilled to be a mom to him when he needed me.

Here’s where it gets fuzzy. Between Ben’s 10000 sports and his grueling sickness, Dylan’s hobbies, and trying to get back to “normal”, I thought I was doing ok. I felt like death; but I had just escaped it so this is “normal” and with time I’d get better. I was looking forward to my church’s annual women’s retreat to replenish my soul. I was able to attend the weekly planning meeting, moving appointments so I could balance my health and still attend. I needed this. I needed STARS. Looking forward to it kept me going. Of course, my family kept me going but this was the selfish time for ME and God to be alone. To sit in some stillness with Him. To be physically loved on and to give love back; loving energy that had been stuck inside, isolated, and trapped. If I could just have that weekend with my sisters and my Father, I’d be ok. I told everyone, “I’ll be there, come hell or high water!”

Super Bowl Sunday, we headed up to church for our normal routine we’d settled back into. Anytime Bruce was home, he’d drive and drop me off at the door because I was still struggling. It wasn’t just that I couldn’t breathe; I was weak. Helplessly weak but I warriored on. That day, we had a confirmation class for Ben and I had to take a few trips up and down the stairs of our church. Each time I’d have to stop halfway and sit, catch my breath... “these people love me and already know I’m crazy” so I smiled and said my hellos. But I made it through class and church. Now each planning meeting for STARS is on Sundays leading up to the event, an hour after late service. So we headed to get something to eat and I headed back to Trinity for my meeting. Looking at the stairs I had to climb to check in, I texted my oncologist my symptoms but ended “lmk if this can wait til normal business hours and I’ll come in.” I took the elevator and signed in. Within minutes, my oncologist responses “I don’t like this at all. Go to a clinic or ER ASAP.” 

Cliff notes- I’m going to have another scan next week and see him again to decide if we want to do radiation. My lungs are muuuuuuch better than 6 weeks ago. Unfortunately, my oncologist said they still sound weak and he’s afraid of damaging them further with radiation. This allergy season has been another hurdle! I’m almost thankful for the lockdown because if I’m not on my respirator at least once a day, I struggle. My last scan showed that I only have 2 spots big enough to be “tumors”. One has been there since my cancer returned and one is “new” and is the only one (besides the original on my right side) that did not respond to chemo.... this one is on a lymph node on my opposite side but still high up near my collarbone. So even though they are tiny, they still want to spread across my chest wall. Basically it spread out of the bottom of my right lung, up my lymph nodes, and now back down the other left side but still in the lymph nodes. Luckily, it hasn’t been found IN my other lung. He believes that radiation alone can knock out the one stubborn tumor and keep me rolling!