Four years ago in January, in the middle of an average day, I entered a whirlwind. The tumult began with a doctor’s visit, followed by a CT scan and then an ASAP referral to Wichita Urology. Each step along the way, doctors prioritized my care.
The next morning, I received a call from my doctor, catching me before my urology appointment. Having reviewed my previous day’s CT scan, my doctor took a few moments to prepare me for the words I would soon hear: “You have a tumor in your bladder. You’re going to be told you have cancer.”
I sat on the kitchen floor. I asked my husband, Russ, to write out Psalm 23. I resonated with the words, “Yea, though I walk through the valley of the shadow of death.”
Since that time, I’ve had six surgeries. I’ve had 12 Bacillus Calmette-Guerin (BCG) intravesical immunotherapy treatments and am considered BCG failure for the number of times my cancer returned. Treating cancer in an area of the body with constant fluids is tricky, and we couldn’t contain the cancer to my bladder despite the efforts of a gemcitabine chemo treatment after my third surgery and a series of eight weeks of mitomycin chemo treatments.
My bladder cancer spread and became ureter cancer. I had three surgeries in 2020 as the cancer spread. Early in the year I was told I was most likely on the road toward a cystectomy within the next five years.
In October 2020, we saved my right kidney by removing five centimeters of my ureter and re-attaching it to a new location in the bladder. Due to a rare set of events, I lost a lot of blood and my hemoglobin dropped. It took months to regain health and strength.
I am a student of human emotion, the effects of our feelings, deeper awareness and noticing the volitional movement towards and away from God that can result.
My world has constantly been affected by and reactive to diagnosis after diagnosis.
We chased opportunities for clinical trials, but that is a tricky business because of the pathology and grades of tumors needed to qualify for certain opportunities at the right time. Within seven months, two such trials flipped requirements and the location of my cancer changed, and the opportunities once again didn’t match up.
Then came an immunotherapy called Keytruda. Keytruda has been around a little while and used to treat other types of cancer. But in the fall of 2020, it had just cleared clinical trials (the ones I couldn’t quite get matched up to) to be used for bladder and urinary tract cancers.
I became the third person in the nation to start using Keytruda in an urological setting. I am Wichita Urology’s first patient to receive Keytruda, and at present, continue to be the youngest patient on Keytruda. I have infusions every three weeks and lab work the week prior to each treatment. Others are now receiving infusions; some have already had to stop treatment due to adverse side effects.
Keytruda is extremely expensive, and I’ve had 15 infusions to date with a two-year goal of 34 treatments or until my body no longer can handle the treatment. This month, I will complete my first year of Keytruda. I am grateful for an excellent care team.
For this anniversary reflection, I’m passing over so many specifics to this journey. I seem to get many rare and challenging situations, including a recent significant skin allergy to the adhesive used following my port-a-cath surgery. The healing process of the incision has been slow and with complications. Thanks again to a wonderful primary doctor who I can call and receive excellent and immediate care when I need it.
All the big and little aspects of cancer cause trauma. I suffer from cancer PTSD and have developed a massive white coat syndrome, despite the excellent care I receive. Recently my blood pressure was 202/102 in the office, and my heart was racing outside of my chest. It stabilized quickly but remained high. Anxiety presents itself even alongside prayers, breathing exercises and spiritual reflections.
I have, in a way, become an observer of my own journey and the vast changes of primary emotions that present after each new diagnosis or surgery. Millions of situations and events reside within the larger sphere of the cancer narrative. I am a student of human emotion, the effects of our feelings, deeper awareness and noticing the volitional movement towards and away from God that can result.
My identity work with others has benefited vastly as we work toward authentic expressions and deeper knowing of ourselves and God. I am beyond thankful for the relationships and work I do as a spiritual director. It is an honor to meet with people and hear their narratives through vulnerable sharing. I’m thankful for the flexibility it creates for me and my own health story.
My last three bladder scopes—I have them every three months—have been clear since starting Keytruda, as well as the yearly CT scan I had in October. As expected with the reimplantation of the ureter, things look different, and the reflux causes that right ureter and kidney to be enlarged.
I am so thankful for the opportunity for Keytruda and the timing of access for it. It does scare me that I qualify for the treatment because I am presently a candidate for a cystectomy. While I walk out this cancer narrative daily, I operate under the belief that currently I am cancer free. Bladder cancer is a lifelong journey though.
Cancer not only affects the individual but the family. I’m saddened that one fourth of my younger son’s life has the narrative of cancer. All of my older son’s high school years and beyond have the cancer narrative. I mourn the losses they’ve experienced. I mourn the lack of energy I have. I do everything I can to be present and have a front row seat in their lives. People make assumptions that I am thriving as they see me out and about, but honestly, everything is prioritized with what I say yes to, and the recovery and rest are significant on the flip end.
I’m so thankful for Russ and his constant companionship; he is with me through it all. I’m thankful for being seen and heard and known by my fabulous Triune God. Jesus enters into my pain and I understand better Jesus’ own pain. I’m thankful for the love and support and prayers of dear souls.
I’m sensing a time may be on the near horizon when I can stop reacting to all that has been thrown at me. A time to move my wings and crack the chrysalis that has held me and nurtured me and kept me safe but has become a cage of sorts, restrictive and suffocating. I feel a creative spirit rising within me. These are marvelous noticings, and I look forward to an expansive 2022 as I enter the fifth year of my cancer narrative.