For the past seven months I have been challenged with what finally was diagnosed as an uracheal adinocarcinoma of the bladder. It has been a long journey because I have a hard time surrendering to God and I am susceptible to anxiety and depression on top of it all. But as of now, I've recuperated well and now it's a waiting game. Following are nine SoulCollage® cards made during the last months that have greatly helped me, along with a written journal, of what I call "The Anatomy of an Illness", and all the emotions related to diagnosis and treatment so far. We usually put our cards in suits and I am assuming these are all Committee cards because they are part of me. Admittedly, I am posting here for catharsis, but I'm also hoping that others who use SoulCollage® can use my process when they need healing. I will post each card in the succession they were made with a blurb below of "The I am the One Who" statements. I cannot begin to thank my doctors and health care professionals, family, friends and extended community who have helped me along the way.
Time May Be Running Out – I am the one who began having blood in my urine in middle May but I didn’t feel ill. I did, however, start becoming very anxious as I intuitively knew something “not good” was up. My own family doctor orders blood work but there is no infection. I next go to Little Company of Mary Hospital for a CT uroscan. I am the one who begins to feel trapped inside my body and I have no control over what is going on. Neither does the doctor and we both find that the wheels of progress to specialists sometimes move slowly. I am very scared. My part-time work is a Godsend.
Frozen in Fear – I am the one who has had a lot of radiation in my life and resist more imaging, but the CT shows a blip at the dome of the bladder. It is assumed to be an uracheal remnant, something I had never even heard of before. The urachea usually disappears about the 20th week of gestation and is part of the umbilicus. Whoever would have thought it would be so complicated to get a timely referral to an urologist? I revert to a frightened child who has no mother and I don’t even have the capacity to notice the sun filtering through the trees. A series of anxiety attacks plagues me when I'm alone and do too much thinking, but in public no one even knows anything is wrong.
Lost Without a Compass – I am the one who asks for a different referral and I am able to get in finally to see an urologist who finds no infection and says cancer in the uracheal remnant is rare but.a cystoscopy is needed for diagnosis. Two more weeks pass and my friend Mary Lou goes with me to the cystoscopy done under local anesthetic in the office. The doc sees a tumor immediately and points it out on the monitor to both of us. There it is. Wow. Me, who is afraid of deep water, feels adrift without a paddle or rudder, at the mercy of cosmic roulette. My guardians try to comfort me, but I am too scared to listen and trust consistently. But, in my own inimitable style, I fake it until I make it.
What Will Become of Me Now? I am the one who realizes that if I want to live, I have to surrender to the doctors and health care professionals. Many tests are scheduled before surgery. I'm off work for summer and I continue to feel like a child watching a movie of me careening out of control as an adult. Internally I wail out to my mom, who has been gone since 1968. I become a frequent user of Torrance Memorial Hospital. In August I am operated on with spinal anesthetic and the tumor is removed for biopsy. Anxious, so anxious. Now I’m with an oncologist again. I wanted badly to use a young local surgeon who graduated from the school I work at and that I knew when he was young. The oncologist arranges it. My part-time job means so much to me. Will I be able to work anymore?
The Human Body is Miraculous. I am the one who begins to amass images of bodies in motion because I want to believe that though the tumor is now diagnosed as an adinocarcinoma, known to be aggressive, and with minimal research in place to support ongoing treatment, that I will somehow be OK. I am fortunate that it appears to be contained. I have survived breast cancer twice and I’m still here. I am counseled by the oncologist not to do Internet research. I do and I find that what I have can be very bad. I stop the research though every now and then I break that promise to myself and begin Googling outcomes.
Angry and Determined. I am the one who has to undergo an immediate colonoscopy because my type of cancer often starts in the bowel. Tough to get a scheduling. I also undergo a PET scan to see if any other areas of my body light up which determines the extent of the next surgery. No cancer in the bowel thank God but the PET shows two suspicious spots in the lung which have been picked up in other testing in the past few years. I am radiation damaged in the lungs from the earlier breast cancers and my pulmonologist agrees to wait until I’m healed from this bladder surgery to see what’s going on there. Up until now I’ve felt so helpless and finally I alternatively feel scared, angry and also tough as nails.
Trapped but Hopeful. I am the one who entered the hospital on September 9 for the bladder resection. My parish priest came the morning of the surgery as well as several people in my family. The surgeon is a friend of my priest and all wish me well in a prayer circle in the admitting area of the hospital. I am embarrassed and grateful. The surgeons robotically remove the tumor, part of my bladder, the urachea, the belly button itself and report they got good margins. I have 5 small scars and one larger one on my belly and I tolerate general anesthesia well. I am in the hospital four days and go home where my daughter takes off work and oversees my care for a week. I am bedridden with a catheter for 10 days but nurses and PT people visit 3 times a week and the pain is manageable. I learned to use a walker, a cane, and my first shower with daughter at hand was absolutely heavenly. I keep telling myself that butterflies come from chrysalis.
A Roll of the Dice. I am the one who did not have to have her entire bladder removed and I am grateful. There will be frequent testing after this, which I dread, but I know that the key to recovery is my faith, trust in the doctors and professionals who will oversee my care, and the ongoing support of family and friends. But, the cynic in me knows these kinds of things are like a roll of the dice. I have a 50/50 chance of no recurrence. For now, no radiation, no chemo, just tests and more tests. Thank God for Medicare and my Blue Cross supplement. Thank God for the excellent health care where I live. I am philosophical about aging and death and now, at age 78, I finally “get it” that living a day at a time with gratitude is really the only logical way to live. But what I know intellectually doesn’t always translate into reality.
Fractured. I am the one who has lived with a lot of anxiety since this health challenge was diagnosed but I’m also the one who just keeps on keeping on. Though I hide it well, I am often unfocused, fractured and it's hard to concentrate because of the fear of the unknown. I also pray and meditate and write affirmations in my journal. I am at back at work part-time, adjusting to my smaller bladder challenges, and I know that I am very fortunate compared to what could have happened. I recently got another PET scan and in two weeks will have my first cystoscopy post-surgery. This test will be done every 3 months from now on. I will need to consult with the pulmonologist about my lung blips in January the oncologist says, but I feel good, look good, and I am looking forward to 2016. Though very vulnerable right now, I keep reminding myself that I am a Streur, tough as nails. I have productively functioned throughout all this and for the first time in my life, I'm cutting myself more slack when fatigue and anxiety hit.