Monday, October 25, 2021

Comments by katydid

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  • I have read every word with hope and new determination. I am a Navy vet who has been in the VA health system since 2004. I was healthy for so many years but in 2008 I was diagnosed first with lichen slerosis and then six months later with squamous cell carcinoma of the vulva (pretty rare. especially at the time). I was turned down for VA care in MI (they used the fact that I had seen a non-VA gyn oncologist as an excuse) so used my Medicare to undergo the surgery at a non-VA hospital. I was given the “twilight sleep” and asked them to be very careful as I am VERY susceptible to medications of any kind. The anesthesiologist then said my doctor thought I would do better with the pain following surgery if they gave me an epidural! By the time I got to the OR the lights were already spinning and the next thing I knew I “came to” in the ICU, having flatlined when the general IV was administered. They called in cardiologist and did every sort of cardio test and discovered my heart is in great shape. (I am 74 yrs. old now). A week later I went back for surgery (removal of my vulva and clitoris) and spent the next few weeks w/ JP drains after removal os 22 lymph nodes. — I will get to the TN soon, I promise. I went 3 1/2 yrs. cancer free and we moved to FL, where my partner received a kidney in 2011 after being on the lists in MI and on dialysis for several years. Now we are going to retire and have fun, right?

    In 2012 I had a recurrence of my vulvar cancer and a GYN olcologist miraculously removed the cancer without damaging my urethra, which was inches away. I recovered and was just short of being cancer free when I discovered a lump in my groin. Outcome was a golf ball sized lymph node w/ cancer—–successfully removed but this time radiation was ordered. I had me annual mammo and was diagnosed with DCIS 2 wks. before I was to undergo radiation. I skipped a treatment to have a lumpectomy but it was unsuccessful. I opted for reincision but meantime the PET scan had shown an area in my liver/colon area so a colonoscopy was ordered (my second in 6 yrs.) I skipped another treatment for the procedure but was oversedated and it was aborted. My partner was told I “screamed out in pain”. The doctor ordered that I be injected w/ 250 mg. of Fentanyl in the IV to bring me back—also Flumazenil, Naloxone, and I guess initially Midazolam. I know nothing about these drugs but have learned that one is a strong narcotic when my records SHOULD my history w/ anesthetics, etc. I finished my radiation, was given general anesthetic in the OR for a colonsocopy (?????) where two polyps that could have become cancer were removed. I then had the second lumpectomy and ended up with a shrunken pitiful excuse for a breast and the “non-cancer” was only 1mm. from the chest wall so I opted for a mastectomy. Somewhere along the way I began having electric shock jolts on the left side of my face/head and I thought I was dying. They didn’t last long but were very scary. I told no one until recently my breast GYN oncologist whom trust so much (but who was not picked to do the surgery) saw I had had a CT scan of my brain and a chest x-ray and an echocardiagram at my request. He asked why I said I was confused, disoriented, etc. and I explained about the pain. He wrote on a small piece of paper Tic Delouroueaux and said he would be surprised if I wasn’t found to have this ailment—–worst pain in the world but there are drugs I could take to help. He said it is not life threatening however. I immediately went online and ended up on Living w/ TN which is how I received your most welcome missive. I questioned why anyone would take a pain medication when the pain lasted far shorter than the time it would take for any pain med to help. I have learned however that the “episodes” leave my totally fatiqued and I pretty much lose the day and sleep in my chair. The confusion seems to worsen too. I am wondering if instead of controlling the pain I should take the anti seizure meds? I can feel the spot where it starts behind my ear and also feel like my head is in a vice — I hold my head motionless and do nothing till it passes (thank God for retirement) as I read about surgery, etc. and you can clearly see why I just do not consider that an option with my history, unless it becomes way more frequent or more painful (don’t see how it CAN though.) I do water aerobics every day for my lymphadema as well as go for massage therapy and am almost back to normal except for one ankle /leg. I would appreciate any feedback you can spare me the time for. Thanks so much. Kay.