We have finally returned from our epic journey. We had driven to Ontario with a monster moving van to transport our son to grad school in Waterloo. We are only home for three weeks, as we must drive back to Ontario to see the urology specialist again in mid-October. His report says he may or may not help me, saying that a repair is “not reasonable,” but indicating that he may make an attempt depending on how I seem in October. So we will drive into uncertainty, as always.
I continue to struggle every day with my bladder defect. It is very difficult physically. But psychologically, it is worse. Women with similar problems echo my feelings: I feel subhuman. I am an inwardly deformed freak. Indeed, a freak among freaks, as the doctors recoil saying they have never seen such a complex case. The defect is so soul-crushing, it takes away one’s will to fight cancer. If I lived in another culture, I would be stoned like a leper. It is so hard to go on, with such slender hope of ever being repaired.
But I do have positive news. I had a CT scan last week. The results show no solid tumours in either lung, liver, or pelvis. I still have cancer at the cellular level in my pelvic sidewall — I am still incurable. My beloved surgeon Carman Giacomantonio, of The Cancer Olympics fame, hopes I might have a longer remission than I anticipate. So this news buys me time. How much time remains unclear.
I was narrowly the victim of a fake conference scam! I was invited to speak at a cancer conference in Barcelona in March. There is a movement among conferences called #patientsincluded — it is expected, when patients speak, to cover their expenses (as they are not reimbursed by organizations, as all other delegates are). With considerable pressure and appeal from me, they agreed to waive the $500 registration fee, but would not cover anything else. When I tweeted about my disappointment at not being able to attend due to these circumstances, it set off a twitterstorm. Patients, doctors, academics all weighed in. Touchingly, members of The Cancer Olympics RCO community offered to pay my way via donations. While heartwarming, that approach would only perpetuate the “Go Fund Yourself” exclusionary policies of many healthcare conferences. But eventually, someone tweeted me this New York Times article, which called out the conferenceseries.com organizers as “fake academia.” They take payment from delegates, but do not peer review submissions. The twitter page of the conference mysteriously vanished after that. Whew! Dodged a bullet there!
Aretha Franklin died last month of pancreatic cancer, and the world mourns the undisputed queen of soul. Rolling Stone magazine rated her the greatest vocalist of all time, male or female. Her 1973 cover of the song “Until You Come Back to Me (That’s What I’m Gonna Do)” conveys the anguish and effort of pursuing a lost lover. In 1974, this song reached Billboard’s No. 1 on the R&B chart and No. 3 on the Pop chart in 1974. Her vocals convey the longing of pursuit, the lyrics show the painful persistence, and the flute brushes it with a tinge of optimism. This song, with its seemingly hopeless striving to connect with a distant unlistening someone, reminds me powerfully of my own relentless struggle to find a doctor that might help me with my defect. I hear it, and I feel it — how hard it can be to persuade, how effortful it is to pursue, and the long lengths one must go to be heard.
I’ll gonna rap on your door, tap on your window pane
I’m gonna camp by your steps
Until I get through to you
I got to change your view, baby
’til you come back to me that’s what I’m gonna do
This post originally appeared on The Cancer Olympics. It is republished with permission.