My first foray into the world of “patient” began the day I was diagnosed with kidney cancer. All my other visits with the doctor, my hospitalizations to have children, and even the odd time I received IVs of blood never had turned me into a patient. To be deemed a patient was for other people, for those who were sick, or chronically ill.
That was never me until a wish for cosmetic eye surgery led me to get a blood test and the report of extremely low red blood cell count, a hemoglobin measure. Mostly aggravated that low reading would hinder my plans to have new eyelids, I assumed my approaching menopause had shifted things a bit for me. Get “re-calibrated” with some blood, be a bit smarter about eating other than M&Ms for lunch, and all would be well.
Well didn’t happen that way. Being told by my GP to go to the ER to be admitted to test for my low red blood cell count was more an annoyance, and bewildering. The GP told me to be careful driving, as I could “bleed out”, were I in an accident. Had I taken him seriously, I might have been better off, but who wants to become a patient?
Three pints of blood, a colonoscopy, an endoscopy and a doctor assigned to me by the hospital later, I was sent home with a packet of iron pills, and reminder to eat very well, especially protein. More liver pate and red meat, and fewer M&Ms, and an improved diet would fix it all, I was told.
Months and more tests later, looking less and less healthy, losing weight, being polite to the doctor, being on time and starting to fade away, I did not know that I was dying. As I could later determine from the doctor’s notes, he thought I was an alcoholic in need of a liver biopsy to “confirm the cirrhosis”. That biopsy required an ultrasound, and the race was on.
The ultrasound tech was chatty and friendly, until a sweep of her wand across my lower right belly. She turned herself and her screen away from me and stopped talking. Knowing the liver was on the left, and her wand was on the right, I had a pretty good idea that the kidney was the new problem area. Of course, my questions went unanswered, but was told that I would have a CT scan later than day. But still no answers.
Still in the flimsy hospital gown, I discussed with my husband what was likely my new kidney cancer diagnosis, and figured I would just get a neat little incision, where they could take out the neat little tumor and I would get on with my neat little life. Off to the CT scan, with more techs discussing me, carefully out of earshot, ignoring my pleas to explain what had been found. “You doctor will talk to you” was the non-response.
But he was pretty non-responsive as well, waiting until late in the evening before telling me what I already knew, that I had a mass on my kidney. Masses don’t belong there, so it must be cancer, but he was unwilling to affirm that. He would find me a urologist the following day, he promised.
That recommendation given without further info, and in light of the frantic internet search, I was not enthusiastic about his recommendations, and especially when the urologist failed to mention any expertise with kidney cancer on his website. Ain’t a good sign, says I, so plan B was to get to the Mayo Clinic.
I had grown up in western North Dakota and had learned that fancy health problems spurred a trip to Rochester, Minnesota. Within a few days, I was in the Mayo Clinic, going through a series of new tests and imaging with the urologist appointment at the end of the day. Try to coordinate that in less than 24 hours, and you will appreciate the miracle of Mayo.
At that appointment, my neat little tumor was now described as a malignant mass, about the size of a softball. It had pushed the kidney up toward the liver, and thus caught the attention of the US technician. Bad enough, I thought, but the subsequent CT had also shown my lower lungs to be full of tiny mets. Mayo’s more thorough CT showed my entire lungs to be filled with tiny white metastases. Not only did I have a huge tumor, my lungs were essentially a tumor colony.
Stunned, and nearly deafened by this news, I struggled to hear the doctor say, “I have a plan for you.” With that hope and that plan, I began to breathe again. And have been doing so for the last 10 1/2 years.
Thanks to so many people at Mayo, including Dr. Brad Leibowich, his staff, the angel nurses, and the Mayo brothers who created this wonderful place.
