Yesterday, as I was walking, I reflected on the past 3 years. I was wondering, had my symptoms been recognized and not so easily dismissed, would it have made a difference? Instead of scrambling to find a treatment now and looking at so many difficult choices, not to mention extreme financial hardship, could I have had just a nice, peaceful, healthy life?
Three years ago, I had a backache. I ignored it for awhile, then it became worse. I finally went to doc. Told him my right kidney hurt. He couldn’t find anything. Went to another, who diagnosed some calcification in my “tailbone”. Still same pain. Went to doc again and was referred to surgical center to have a series of shots into my spine. I’ve never felt such pain. But, after one ($1800) shot I did not return. Did not help. I said, my right kidney hurts. I felt I was being passed around like an old shoe.
This went on for 18 mos. Then I had additional bladder pains and frequent bathroom visits. As many as 15x a day. My doc sent me to Urologist. He did a test, inserting the scope without local anesthesia. It hurt so bad I came off the table. His diagnosis was “Interstitial Cystitis”. A chronic disease where bladder membrane is “eaten” away. Medicine cost, per month, $450.00. It was a good thing I could not afford that. Pain persisted. Made my own appointment with a urologist in Grand Junction. They said my bladder was fine and healthy and after (finally) an x-ray, it turned out I had kidney stones. Removed by Lithotripsy as an Outpatient and still $16.000.00
Next. Many different symptoms. Hair falling out, grainy eyes, swallowing difficulty, heart palpitation just to name a few. Doc said, nothing the matter except “old age”. My daughter worked for an oncologist in Alabama who diagnosed a thyroid problem just from these symptoms. I insisted on a test. The doc did agree and then called and said “It’s Normal.” I said so was my cancer test. (Ovarian, 10 yrs ago. No one listened then either.) Base number is different than what is still used by many doctors. That’s why it shows normal; when it is not. All symptoms disappeared with a small dose.
Next: While in Seattle visiting my son for Christmas, I had a severe cough and spit blood. I thought, it was due to climate change and harsh cough. Ignored it for the time I was there. Came home and it continued. Upon rising I had so much mucus I was afraid it would strangle me. Scared me.
Back to doc, who listened to my lungs, knocked on the back a few times and said, they sound clear, but did send me across the street, to Ear, Nose and Throat doc to check. He did put a scope down my throat and said I had an increased mucus production. I questioned that, since this had never happened before. I told them that I did not agree with this. ( I believe this is when my lung tumor started. The cellular change.) When there’s cancer in ones background, would not a test be a good idea? We rely on the medical professionals to advice us.
Meanwhile, I was dealing with Plantars’ Fasciitis, which was hell in itself.
I was dealing with very stressful family issues. My whole body was falling apart.
Next. I was sitting on the couch, watching T.V. when I absentmindedly scratched my armpit. I noticed my lymphnodes were swollen. Well. I didn’t want to run to doc again, since I had the feeling I was thought of as hypochondriac. After a few days though, of increased swelling, I did make appointment. He looked and touched and said it was “barely” noticeable. Sent me to another doc, who said the same. Sent me home. My CA 125 (cancer blood test) was steadily creeping up.
I FELT that something was wrong and would not be quiet. It was on one of those appointments, when I asked the doc if he ever had someone say that their blood was singing, that he paid attention. Immediate blood test which result was such that he told me to rush to the hospital for another test. Scared the beejeezus out of me, as they were saying that it could be a blood clot, which could kill me. (Thanks for the nice way of telling a patient.) It wasn’t. Then he said, “Well, we’ll just go ahead and do a P.E.T scan so we know once and for all.” Just to appease me.
I did and that was the beginning of this present nightmare. P.E.T showed 3 tumors. One in abdomen (gone with lifestyle changes, never re-appeared.) Lung tumor, since removed with VATS, and now dealing with this last one.
Now I have Lymphoma stage IV. (is this a Roman 4?) Although I have not have had any of those symptoms. (Swelling has not re-appeared , except once or twice, since I’ve changed lifestyle.)
O.K. I got that off my chest and now I deal with whatever I must but I will have a say in my treatment of it.