When you have a tumor inside, which has hidden and grown and chewed away at your health for years, no sensible emotions are left in place, and no sense of patience is possible. All the advice to wait and see if it is really malignant, get a second opinion from a more experience doctor, just can’t wish/pray/eat/not eat it into oblivion, go to a really pretty spa in Mexico where they do wondrous things without a knife–they all sound alike.
I’ve always been healthy. Maybe I really am healthy and can live with this. Maybe the reason that I have been panting going up stairs, and having night sweats really mean more than menopause. Maybe they got the report wrong, but why did the ultrasound technician sudddenly go silent and begin to frown.
But reality does intrude, and at Mayo it was a reassuring reality, one which recognized that I was sick, that I needed TLC along with clinical expertise, needed to hear music from a beautiful piano, look at art and flowers, and needed Kleenexes on every table in every waiting room.
Coming in on an overnight flight, with a doctor friend having helped make the first appointment, I was anguished to realize that that I was in danger, and dependent upon people I did not know, and a system that was new to me. But the moment I picked up the phone at the Rochester Airport, I was connected to Mayo. Instantly the voice on the other end tracked my name, asked how I was, inquired if I had anything to eat or drink–so that she could schedule me for tests to be run on an empty stomach, and still find me time for lunch. When was the last time your medical system worried about you so tenderly?
I was brought directly to the intake area, where another person found all my records and my medical itinerary, with numerous pages of tests to be completed that day before my doctor’s appointment. With a pink marker, she circled the goals, including getting me fed, and with clear instructions, sent me to the first test. The atmosphere is serene but focused, with people from around the world, all ages and shapes, all coming to Mayo for help they could not get at home, or because Mayo had become home.
My prejudice, having been raised in North Dakota, is that the Midwest teaches people to value kindness and competence, all in abundance at Mayo. Although the nurse in the CT clinic had seen hundreds of patients in the weeks prior, and perhaps thousands over the years, her pats on the shoulder and gentle questions about my feelings comforted me. When she told me that she would include me in her prayers that evening, I knew she was sincere, and I was grateful.
My five o’clock appointment, now accompanied by my husband and sister, was both dreadful and calming. He reviewed the CTs we had brought from California, had all (!) the tests from earlier that day, and did a physical exam. When he pressed on my belly over the tumor, he could not help but ask, “Didn’t this guy feel this thing?”. The flash of anger was real, and the set of his mouth made me understand that this was obvious to anyone doing an exam. My several endoscopies and colonoscopies never included the checking my belly, the simple laying on of hands.
“This will have to come out, along with the kidney.” So much for the fancy “snip and bag it” approach which seemed so simple. By now I just wanted it out, without regard to scars and technique, and I had a second kidney. “This has to come out, and I can’t do it until Monday.” It was late Tuesday, but he understood the urgency in my gut. My kind of guy.
“Did your doctor tell you that you have mets in your lungs?” No, I had not been told. The stunning announcement of my life. I was not going to be able to get rid of the tumor and go on about my business! The mets in the lower lobes of the lungs were clearly visible in the CT scan from California. Were there 15-20 tiny snowflakes of tumor there? The new CT scan of the day showed a blizzard throughout my lungs. No way to operate on hundreds of mets, and life changed again.
“And we have to talk about followup. I will recommend high dose interleukin 2, which can be done here or at UCLA.” That was the lifeline which kept me being able to listen.To go from the need of an fairly non-invasive operation, to one which would open my gut and remove a kidney by slices of steel in my belly and then to a situation in which physical removal is possible! No wonder that people call having cancer a journey with no map.
There is only a goal, which is so simple. To get well. To not die too soon. To not die before my son graduates from high school, to not die before my daughter graduates from college, to not die and leave my children in the kind of pain which I had when my own mother died. We had a plan, with a drug I had never heard of, and one which had to work. I had no other option but to live.