T’was Beauty (or at least vanity) Killed the Beast

Being vain, and getting ever aware of the famous ravages of time around my eyes, I was thrilled to talk to a cosmetic surgeon about an eye lift.  The magazine ads tout the life-changing benefits of an eyelift, but I never envisioned the tumor in my kidney as a bonus.

Most people get a blood test, and read the reports with a frown, as the abbreviations and terms are pretty arcane.  An asterisk or two alerts the reader–rarely the patient–to values that are out of normal range.  Oddly, my hemoglobin, the red blood cell count was about half of normal, a 6.8 with a normal range for women about 12-14.  “Had to be a false reading,” said the doctor, and I agreed. I was always healthy, so one more lab test is in order.  Anxious to be beautiful and on the way to a concert, I was thrilled when the doctor phoned with the new results–until I heard them.  The hemoglobin was 6.6, and the doctor told me to go to the hospital.

“When? Right now? Why should I do that?” I questioned the doctor.

“Well, if you get into an accident, you’ll bleed out.”  Pretty compelling reason,  so I drove very carefully to my nice suburban Emergency Room, basically annoyed and bewildered.

I was admitted, had my poop checked for internal blood loss, and was given three units of blood.  Somehow this became more serious, when they pump blood into your arm, and come back and do it again.  All for a little eyelid surgery that I could certainly put off!

Halfway through the first pint of blood, I trailed my IV of blood into the bathroom and looked in the mirror.  So odd that my lipstick was still on after all those hours, when it never lasted that long…and then I realized that my lips were reddish again, not really needing lipstick, now that I had a bit of blood in me.  And still I did not realize how serious this was.

A colonoscopy and an endoscopy (an “upper and a downer” ) checked out my innards, with the finding of a “tiny, scabbed-over ulcer”.  Aha! Nothing to worry about after all.  I was sent home with iron pills, a promise to eat lots of red meat and dark green vegetables, and to come back in three months to show off.  But still no eye surgery.  Despite the blood, I was still officially seriously anemic.  But I suddenly had no periods, so that was good; world’s most efficient menopause.  Who could complain?

For nearly eight months I had blood tests, iron pills, more endoscopies but no more ulcer, more iron pills, and finally iron shots–black bruises of noteworthy sizes–don’t ask where.  Then a test of my entire gut, weight loss despite the good diet, incredible night sweats but no periods, and an increasingly haggard look.  Finally the doctor (number two in his class!) quietly decided that I must be a drinker, and sent  me to get an ultra sound of my liver for a biopsy. This was to “confirm the diagnosis of cirrhosis”, a condition never discussed with me, and despite my once a week wine-with-dinner history.

A cheerful ultrasound technician chatted with me as she swept the wand to the left for my liver and to the right for…sudden silence and a frown.  Instantly I knew something was wrong.

“What do you see? Is it my kidney?”  No answer.  “What have you found?” No answer, but a murmured, “One minute”, and she left the room.

This was the “Oh, s..t” moment.  It’s obvious that there is a tumor somewhere, but being the patient, I get no information.  My first reminder of my place in the food chain.

“You are going to get a CT scan; we’ll fit you in today. Leave your gown on.”

“What have you found?”  Silence.

Back to the cold waiting room in my “gown”.  Thought gowns were to be reserved for galas and balls, but this wasn’t it.  Within four hours I was in a CT machine and behind glass walls, two men (doctors?) were pointing at a screen out of my view, gesturing and nodding.

“What have you found?  Its pretty obvious there is something.  Is it on my kidney?”

“Your doctor will talk to you when he can.”  Translation: you have cancer, and we’re not going to tell you anything.

Hours later, and after many phone calls to the doctor, he finally called back.  “You have a mass on your kidney; it will probably have to come out.  I’ll find someone to refer you to in the area.”  Translation:  Welcome to cancer.  Guess it’s not a tiny, scabbed-over ulcer.  Now find somebody else.

On to the internet, reading about kidney cancer.  Stats; 38,000 new cases a year in the US, and 13,000 a year die of it.  Decent odds if they can find it early and take it out. Glad mine was found so soon.  Really pretty grim odds if it is large and has metastasized.  Efficient thing, kidney cancer.

With urgency, I check out the website of new doctor. No mention of kidney cancer at all, and he’s my new expert?  This is the recommendation from a guy who treated me for eight months for an ulcer.

Dr. Newdoctor’s receptionist won’t tell me if “doctor” treats kidney cancer.  I can ask “doctor” about it three weeks or so.  Translation:  We don’t care that you might have cancer.

But I am from North Dakota and grew up in a town without a doctor.  If you really got sick, you went to Bismarck, and if you were really, really sick, you went to Mayo.  I went to Mayo.

Five days after my ultrasound, I sat with Dr. Brad Leibovich, a doctor recommended for his surgical expertise and kidney cancer research.  Over the weekend, I had read about laporascopic surgery, where the surgeon makes little holes in my belly, his tiny scissors nip out the neat little ball, which he puts in a clever baggie (no ziplock?), and drags out into the light.  I plan to stomp on it. That’s the kind of surgery I want, simple, clean and efficient, so I can go back to normal.

But Dr. Formerdoctor (his name upon quiet request) failed to tell me that my tumor was the size of a decent orange. No nip and bag operation for me!  He failed to tell me that the CT scan showed the lower lobes of my lungs full of tiny dots of cancer.  A more complete scan showed “too many mets to count, with several of measurable size”.  No longer one of 38,000 new kidney cancer patients, I was suddenly one of the 13,000.  Maybe I would last until next year.  Maybe not.


Filed under About Peggy, Biological Systemic, Immune Therapies Old & New

3 Responses to T’was Beauty (or at least vanity) Killed the Beast

  1. Margo Braunstein

    Your most recent post brings back horrific memories of my diagnosis here in Florida, which we all know happens way too frequently. Ironic that I too, found my way to Dr. Brad Leibovich and Mayo Clinic. OUTSTANDING DOCTOR, outstanding team…! Thanks so much for your continuing research on behalf of the kidney cancer community, Peggy!!!!

  2. Appreciating the dedication you put into your blog and detailed information you offer.
    It’s awesome to come across a blog every once in a while that isn’t the same old rehashed material.
    Fantastic read! I’ve bookmarked your site and I’m including your RSS feeds to my Google account.

  3. Steph B.

    very similar experience to mine; I spent a month thinking I was going to die from cancer before going to see Dr. Leibovich. What a reassuring visit that was, to have him tell me that no matter what it was, he could help me.

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