Y'ALL. 

I HAVE NEWS TO SHARE. 

I haven't updated you, my larger crew, since August... much has happened in the last 6 months and continues to happen with my recovery. I've had a break in many ways, and in many ways I have not. I write 6 months, and my mind feels shocked by that length of time. It was a blink. Even if there were many days that felt like years. 

My bladder has not fully healed. I wonder frequently why it felt so much better in August and why it became so irritated again. Food? Coffee? Ability to relax? Stress? What was so different about that time in Rochester that caused the pain and frequency to subside.

I've been reading about interstitial cystitis.  Trying to find answers for the root of this pain and dysfunction. It is the only diagnosis that seems to make sense of my symptoms. Pelvic floor dysfunction and nerve damage. Our pelvic floor muscles are so intertwined with our bladder function and nerves that run through the muscles. The nerves tell us when we need to pee, if we can hold it, and to relax. Over the past month, I've realized I'm afraid to pee. I used to be afraid to pee when  the worst was happening a year ago, but I didn't realize how afraid I still am. And that is because it was incredibly traumatic to pee blood clots. I held my pee in so tightly, so afraid to pass a clot. So afraid a clot would get stuck because they often would. An enormous blood clot just stuck... my bladder spasming uncontrollably to empty itself of the chemo toxins and blood. Pushing the clot through. Trying to relax enough to let it pass, knowing it would be painful. My nerves learned tightness, holding in, fear of pain. And it's a cycle now that perpetuates the pain. I am afraid of pain so I hold in. Holding in causes tightness and nerve irritation. My bladder is still living in this trauma cycle of feeling the need to empty, but too afraid to allow it. 

I see a physical therapist once a week and she massages my pelvic floor muscles to get them to release. How does one massage pelvic floor muscles? Well, the best way is through the vagina. When this was explained to me by my therapist... sheer panic. I do no let anything near that entire area of my body anymore. I'm terrified of irritating or igniting the pain that feels like shredded glass.  You could say physical therapy has been an act of trust. Someone kneading out the most intimate and painful parts of me. I practice breathing and relaxing through it. Which exercises my brain to practice relaxing and believing I'm safe. When I gave birth, I held back panic by telling myself over and over, "You are safe, your body was meant to do this." I find myself having to commit to that same practice now daily. Hourly. Every 15 minutes. You are safe, your body can do this, you don't have to pee right now, there are no chemicals, your bladder is healing, your muscles can relax, your nerves can rebuild. Do not be afraid. Your body can function, believe that it can function. 

I'm tired. It's mentally and physically exhausting. I hate to admit how it steals my joy and keeps me from doing social things. It's easier to stay home in adult diapers than wander out into the world, trying to cover my diaper butt, trying to relax as I pee 30 times over the course of a coffee date. It's easier to stay home and practice relaxing and feeling safe. I often feel ashamed of feeling so weak and vulnerable. Why do I care if I have to wear diapers or pause in the middle of the grocery store aisle to breath through pain. It doesn't matter. I am not my diapers or my pain. I am working to believe this too. 

Staying home brings me to my first bit of good news. That I have a home!! In October, I closed on a house, and it's given me life again. Having my own space to make mine with River... I couldn't have imagined how healing it would be, even though I knew it would be. It's perfect. And it's perfect because it's ours and it's safe. I've made it too cozy for my own good. Hard to want to even go anywhere because I love my couch too much and my plants and my big windows. I couldn't be more thankful to have this place. So many people helped make it mine. My parents for helping me finance it, my family and friends for helping me paint and move. I couldn't have done it without my community. And I love that about my home too. That it was molded into my home with the love of everyone I love so dearly. 

In October, I also completed a few more rounds of radiation, which was mostly uneventful... I was very tired and nauseous, but my house kept me moving forward with hope. In December, a few days before Christmas, my next PET scan showed very promising news.. the tumor area was now the color green.. an improvement from orange. Dr. V was very pleased and I let hope grow a little more, still cautious.

At the end of January I got the big bad covid. I survived it. I really only had an annoying cold for 3 days. That was about the extent. At the same exact time, my tumor calcified to the point of pinching off my left ureter. Talk about bad timing. I was rushed off to the emergency department. Nephrostomy tube placed. Spent days in a covid wing with a roommate courtesy of bed shortages.. even though I wasn't there for covid. This all felt like 37 steps backwards. Not another nephrostomy tube. What the hell is going on with my ureter. When the doctor told me the CT scan showed a lymph node with calcification was pinching off the ureter, my brain collapsed into panic. Is my tumor growing back? Is the lymph node bigger because the tumor is bigger and growing into my ureter? Hot, searing anger. I was getting better.. wasn't this all behind me? I was walking into a future again. Is that being taken away again? I was devastated by this news. I wish I could say I was strong and hopeful and kept my cool. I did not. I sobbed for hours, alone in that ER room. I let the news trample all my hope and joy for a future. The little amount I had allowed to grow was just gone again. 

Weeks later, they checked the ureter and decided to remove the tube. I was able to go to Mexico with River in February for a few days to visit my parents. Our first vacation together in two years. We swam in the ocean, napped in the sun.. it was everything. 

Just a week later, pain again in my back. I definitely did not go the emergency room as soon as I should have because I was stubbornly hoping the pain would just... get better. It got worse.. to the point where I couldn't move. My sister, Shelley, took me in at 2am and another CT scan showed that my kidney had actually ruptured this time. Definitely waited too long to go in. Another nephrostomy tube. Stayed in the hospital four days on pain killers. I was released home and my mom stayed with me for a week, nursing me back to life with soup and love and prayers. February was a hard month. I had a hard February in 2021 too.. I'm starting to not like February haha. 

My next PET scan was scheduled for March 10. Doomsday. Just kidding. 

I walked into Dr. V's office for my results appointment pretty numb. Trying to be ready for anything. If my tumor was growing back, so be it. If it wasn't, so be it. I had no emotion about any of it anymore. I was too tired to feel sad or happy. It just was what it was going to be. The only new path my mind had started to take was the decision not to do anymore treatments. If my tumor was growing back, I was seriously considering saying no to more treatments. I was just going to let myself exist for as long as I could without more new debilitating side effects. I was at the point where I just wanted to spend my last months with River and not in and out of hospitals under a doctor's research microscope. That's how dark my mind had become. Death was just there. It was something I had fully accepted. Despite having walked into a future with a home. I believed it would be my home for a few more months and I would be thankful for the time I had to enjoy it with River. And that would be that. 

The scan showed no more cancer. 

The scan showed no more cancer. 

The. Scan. Showed. No. More. Cancer. 

I have a future.

I'm crying as I write this. haha. I haven't really stopped crying for weeks. Tears of joy, tears of hope. Tears of understanding what it's like to have a future again. Tears of disbelief. Tears whenever I get to hold River close. Tears when the sun comes out. Tears for spring. Tears when I think about the ways I was held and loved through this nightmare. Tears for the ways I've been changed forever. For the best. Tears for how my community loved me and how God loves me and has shown up for me. Over and over and over and over again. I could look back at all of this mess and be angry. I could use cancer as another excuse to deny the existence of a God who loves me. But, I've witnessed God in all of this too vividly. I've experienced His love for me, His steady provision. His grace. I see how He's pursued me to make love present in my life.

I have so much to say about it... that I'm writing a book about everything. I'm taking a trip to Joshua Tree with my mom in April to finish writing it. A few days in the desert, in the sun. I can't wait to share it with you. This insane love story about cancer in a pandemic. I have songs to share with you, drawings, and many, many, many more details and thoughts about this time in my life. I'm nervous and excited to share it all.

I'm hoping to release the book by Christmas this year. Eeeeek.... feels so soon. If you have any connections in the book publishing world... help me out? Would love your support in this. 

I'll continue writing updates... my ureter will likely need to be reconstructed around the calcified tumor.. my next appointment for that is in May. Until then, I'll be working on believing my bladder can do what it was designed to do, staying away from door knobs (my hanging neph tube loves to hook around door knobs, which can pull it clean out of my kidney.. fun times), and enjoying another spring with Rivs.  

All my love,

Gwen