Living with Kidney Cancer

For what it’s worth…

I, don’t remember too much after the emergency room doctor, came running in, and said very out loud, “you have a large tumor in your kidney, it will have to be removed.”

I had gone to the hospital because of severe pain I had since a biopsy of my liver was done in the same hospital the day before. I was in so much pain I thought I wanted to die, then when I asked this doctor what was he talking about, I only came here to get checked out for pain in my side. He replied, “you’ve got cancer and you better talk to your personal doctor.”

“Wait a minute,” I said, “what personal doctor”, I haven’t been to a doctor for nearly twenty years, except for this biopsy for my liver, because I had a checkup and they said I had a fatty liver. “What cancer, what are you talking about” and “where are you going.” The doctor that just shattered my thoughts and my world, just walked out as fast as he came in, without a care in the world of how he had just given me such a shattering knock out punch.

I was told my personal doctor would answer all my questions, and with that I was left alone in the emergency room of the hospital. I didn’t know what to think, I didn’t cry or scream or do anything, I was just completely and absolutely stunned and shocked and I felt like I must be dreaming. But dreams aren’t this bad or so scary, and you eventually wake up.

I was told I was being admitted right away to the hospital, “was there anyone I wanted to call,” was the next thing I heard from a nurse. I answered I don’t know, why, why should I call, whats going to happen? confusion and unknowing what was next.

The next thing I’m being asked all kinds of personal information, insurance cards, drivers license, phone numbers, who to notify, and I still cant get anyone to tell me much about anything. I cant remember if I gave answers or not but they kept asking. The emergency room was suddenly so quiet, when just a few minutes ago it was bustling with people and noise and all sorts of goings on. Now I was the center of my world, and it was horrible world and cold and unknown, filled with uncertainty.

They finally give me some morphine for the pain, that I first came there for, I guess it was the least they could do for this poor slob they just told had cancer. Cancer, I have cancer, the words were not registering with me, as if I was watching television, because this couldn’t really be happening to me. Yes that’s right give me some morphine, plenty of morphine. The bad thing about the morphine was, there was so much pain it went to ease, physical pain, that it didn’t cloud my mind.

I felt the warm sensation of the drug entering my arm, but I was still , trying to get it in my head that I wasn’t going anywhere tonight, and I have cancer, cancer that killed my grandparents. Cancer that took the vocal cords and larynx from my brother, never letting him speak anymore, except with a device placed against his throat. Cancer, I have cancer, it just didn’t sound right, there must be a mistake.

I stayed overnight in the hospital, and the doctor who I first went to see for a simple checkup, came in the next morning and asked me if I wanted to go home. I hadn’t slept a wink, I didn’t have television, family was told they couldn’t stay, and I was asked did I want to go home.

Yes I wanted to go home, I wanted to go home and go back in time to the day before when the world and everything in it made sense, this new world was not where I was supposed to be. Surely someone had made a simple mistake and it would all be straightened out in no time at all. I caught myself breathing a bit more normal now. yes I want to go home, I want to get under the covers and go to sleep and wake up yesterday when things were just fine.

Well that never happened, I did go home, came back, and had a barrage of tests, to make sure there wasn’t any other cancer roaming about my person. I was checked from head to toe, bone scans with radioactive stuff injected in me that was so dangerous it was conveyed in a lead box, and it even had a half life, and the cost was so high you would be in a real bind if they ordered the test and you skipped out of town. My chest was found to be absent of cancer but the stress test for the heart determined the ticker might not be in all that good shape for the cardiologists ( one of a dozen new medical specialists I would eventually make my acquaintance with). More radioactive stuff injected to determine flow rates and absorption analysis of the good kidney and the one loaded down with the cancer. Another CT scan with yet more injected dyes into my body. Blood tests and I don’t remember all but there were more.

Now I have had all this radioactive stuff and this iodinated contrast injected in me, and its my belief that this is not such a good thing for my “good” kidney since I’ve been told that I have three or four “good” sized cysts on it besides the tumor in the “bad”kidney. But I am reassured by the discussions between the doctors and staff that nearly everybody has cysts and there’s not any need to be concerned about that now, “lets just concentrate on getting that kidney out ASAP.” Not knowing how I can live with just one kidney, and it has numerous cysts, I add another level of fear and worry to my overtaxed brain.

I had to convince the heart doc that it was really nice of him to be so concerned about my heart during an operation, but I reminded him that without the operation, I would soon be dead anyway, so now the operation is a go. I don’t mean to sound so cavalier here, because I was a bundle of nerves at the time and anything that could possibly go wrong, I was sure would go wrong. This was the begining of my adventure into the wonderful world of medicine.

It was also at this time I was terminated from my job at Federal Express, because my application for Port Authority clearance was denied due to a minor incident that happened almost forty years earlier. I was informed by the State of New Jersey Division of Unemployment, that I was fired due to misconduct on my part, and I wouldn’t be getting any money from them either.

Well there you have it, that just about sums it up, a pretty gruesome tale if I do say so myself, and I do, yup, not much to write home about, no job, no health, yeah it seemed like I was just about finished, good night Irene, tears, anger, and hatred, filled my heart and flooded my soul so much, that I knew things couldn’t get much worse, so the only way to get going was to get on with things…first things first, easy does it, and God never gives us more than we can handle. All that in one sentence wow.

I had my laproscopic radical nephrectomy with hand assist. I was concerned about the wrong kidney being removed, and I was seriously thinking about using a magic marker to mark on me “cut here” but I wasn’t sure where they would be cutting. I expressed this concern to the doctor, and he assured me they would take the “right” kidney out. I excitedly said it was not the right kidney, it was the “left” kidney.

After the operation, my recovery, unable to move or eat any solid foods until my digestive system wakes up, staggering around the hospital hallways, with my I.V. following on its wheeled chariot, getting back home, fighting with the state for my unemployment, trying to convince the Port Authority to give me my clearance, trying to get my job back, and finding out about “Cobra” insurance and the astronomical cost, since I was terminated from my job, and changing my dressings on the 8 inch cut and four other entry points made in me for the operation.

. At least I thought I wasn’t terminated from my life. All this and becoming more and more aware of what was cancer and what was renal cell carcinoma. It was around this time I found this wonderful site. I also got the book by Cynthia Chauhan called “Incidental Findings”, both events fueling my desire to get on with life instead of getting frustrated and depressed.

I started to research this and found that as we all are quite aware, how much different rcc was, how it is historically unresponsive to radiation or chemotherapy Perhaps it was better not being sick and losing hair, but I thought it was great the doctor said he wouldn’t recommend any chemo or radiation. At the time I thought it meant I was cured but that was before I knew about this disease.

I also found thru this site a fantastic doctor, a true leader in the field of rcc research, with hundreds of articles authored on rcc, a gentle soul, and a kind considerate doctor that takes time to listen and respond to your questions and needs. If not for the members of this list, I never would have known of this doctor, and I would be that much more in the dark and without hope.

So to wrap things up, I have been thru quite a bit last year, probably the worst in my life, and I harbour no ill will, I am more at peace with myself than ever and I figure anything that gets thrown at me is manageable and no big deal. I have learned to take my time, smell the roses, plant the roses and most of all enjoy the roses. I wish anybody that took the time to read this way to lengthy diatribe, good health, great days and nights, all the love and happiness they can possibly endure, and smiles galore until your cheeks are sore.

God Bless,
R. Piombino
Cancer Survivor