Year: 2018

Living with RA Disability

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  Rheumatoid arthritis (RA) is considered a chronic disease. A characteristic of chronic disease is its disabling features. Walking may become more difficult. Activities like dressing, preparing meals, performing personal hygiene and completing household chores become harder and harder. Life becomes increasingly challenging until a person hits a crossroad where they make changes in his or her life or gradually slips down the slippery slope into a dependence that requires custodial care and no turning back.  RA is known for making life challenging in many ways. Like cancer, diabetes or all the other autoimmune diseases, being able to live with RA starts by making changes to our lifestyle. Pain management is a big concern for those with RA. There is no going around the fact that pain is a common feature of every day RA life. There has been much written on managing pain. Managing pain is possible with the help of professionals skilled in pain management. The topic requires its own space although these suggestions will help lease the burden of that pain. For …

Look Good Feel Better

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There is one good thing about chemotherapy. It is the Look Good Feel Better program. Fun. A time to share. Like Christmas. It is a two-hour appointment with a cosmetologist in a small group of women who have cancer. I had participated in a program five years ago when I was in radiation treatment for breast cancer. That appointment was at MD Anderson on Indian School near Kaseman. This session was at the Rust Cancer Center and was equally as good as the one five years ago. We are each given a cosmetic bag full of cosmetics that matches our skin tones. The bags come sealed and ready for us. At our places we each have a mirror and cosmetic wipes. Opening the bag is like Christmas. My bag had Chanel powder, lipstick and blush. Clinique foundation, Estee Lauder face cream and eye makeup, IT brow powder and a set of brushes, body lotion and sun screen. Pure joy. Our instructor walks us through the steps of taking care of our face during cancer treatment. …

How my hair came to fall out, more experiences with cancer treatment

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I remember when I learned about my latest cancer (#3).I knew that once again my life would be consumed by all things cancer. After major comprehensive surgery (they took almost everything out), it was time to settle into chemotherapy. My oncologist, Sara Jordan, had explained the reasoning behind the treatment she proposed. Chemotherapy would be part two after surgery and before vaginal radiation. I figured she might be able to cure me which sounded appealing and worth the effort I would be expending. This picture shows my hair, but it was taken after surgery and before chemo. The chemo was to be a commonly used combination of Taxol and Carboplatin. Six sessions in 21-day cycles. Hair loss is definite and is estimated to be 2-3 weeks after initial infusion. This allows a little planning time. My hair stylist, Audrey, cut my hair into a short pixie. Much better than a butch or a clean shave. The second part of the plan was to shave it when it started falling out. About day 19 after the …

the joy of roses

Cancer Number Three and RA

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  It is almost a month since I had a robotic radical hysterectomy and it has been four days since I had my first chemo. I feel pretty good all things considered. Additionally, a minor surgical procedure placed a power injectable SMART PORT under my skin connected to a catheter that was threaded into my jugular vein and down to my superior vena cava creating fast access to my body’s circulation.  It is not as bad as it sounds. Sloan Kettering has a PDF that explains the procedure. My skin has been tender, but the lidocaine ointment works and relieves the discomfort. My RA is complaining with all joints hurting morning and again evening time. Walking hurts my feet even though I have custom shoes and custom triple layer inserts.  I am glad I take methotrexate injections, Plaquenil and meloxicam. I take 6 mg Medrol and can boost the dose into a dose pack if needed. So far, I am holding steady. With RA I think it is important to move. Aerobics are nice but …

Cancer Surgery Number Three

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My surgery is over, and after an overnight hospital stay I am safely home. The doctor took many things out of me and she biopsied the rest. My doctor is a GYN oncologist surgeon, Sara Jordan. She is amazing and couldn’t be better. She feels that my serous uterine cancer, a rare subset of endometrial cancer and known for recurring, needs to be treated aggressively. I completed the first step, surgery. Prepping for the surgery was a challenge. I was required to spend Mother’s Day on a clear liquid diet. Then on Monday I was reduced to NPO status even though surgery wasn’t until one pm. I was running on empty so when I approached my preop, well-padded bed, I was relieved to get in. Stripped down like a hijacked car, clothed in the traditional blue gown, IV successfully inserted, I was ready for surgery. OR nurse stopped in. Anesthesiologist checked in. Dr Jordan reviewed the surgery again and introduced me to the second surgeon. Time seemed to accelerate. It was five minutes past one …

My RA and CA and me

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If it weren’t for the third cancer hanging over my head, I would be a very happy soul. As it is I am just a happy soul. My roses are blooming. This is their big month and they are not disappointing.  Gardening and puttering through the various chores of my household reminds me of my housewife days. Good days. I aspire to the Hobbit life. Mellow and satisfying. Life in my home. I attend warm water pool classes at the Presbyterian Healthcare facility on Eubank. It is a long drive, but the classes are worth it. A comprehensive and aerobic workout that is manageable in the pool but not on land. Yesterday, I suddenly had a severe pain in my pelvic area that ran down the inside of my leg. Something new. Scared me. I thought about getting out but decided to lower my exercise level and see if it would pass. It did. I am no stranger to pain, back pain, joint pain and now this. Johnny Cash’s Peace in the Valley is sounding …

RA and Another Biopsy

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Back to the hospital for another round with the medical community. When I had learned that I would need an endometrial biopsy for uterine changes due to the breast cancer drug Tamoxifen and a D&C due to polyps, all I could think of was here we go again. I am six months out from a difficult hip replacement recovery. I am still recovering, stiff and sore. But I am in much better shape than I had been. I am in warm water therapy classes several times a week. My garden is a joy. Beautiful, productive and satisfying. My yard is home to rabbits, a squirrel, quail, roadrunner and a happy assortment of birds. By the end of the year I hope to be certified as a wildlife habitat by the National Wildlife Federation. My brain is finally working, and I am starting to write again. Then this. I had previously written a blog on getting more bad news. This really isn’t bad yet. I won’t know for another 10 days or so. Those with RA …

RA and the Bread Machine

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In December I had the urge to make bread. It was the same urge that I had several years ago to start knitting. I knitted everyone a beanie, or a wrap or a special heart to say I cared.  I am still knitting. I am working on a blanket project that is over half done, a wrap for my Watertown, NY sister-in-law and a fluffy, bright red beanie for a friend. Now I am adding breadmaking to my list of activities. I researched bread machines on the internet. Found the one I liked, a two-pound Oster and added it to my wish list. Eventually, Amazon made me an offer that I couldn’t refuse. In December during my hip replacement recovery, I became the happy owner of an Oster bread machine. The bread is made in loaf form, has nine plus settings and produces perfect bread mostly by itself in a little over three hours. Along with the machine, I ordered The Bread Machine Cookbook by Donna Rathmell German. It was her first book and I …

I thought I was going bald, it was just the MTX

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About six weeks ago, I started noticing my hair thinning. I thought it was odd because my dad had thick hair in his older years. I expected my hair would do the same. My hairdresser also noticed the thinning. It was real. Next, I started noticing bunches of hair on my comb. “My hair is falling out,” I thought. Right again. I quickly realized that it was the methotrexate (MTX). Hair loss only occurs in 1-3% of those on MTX. I have been on it for five years and the last three years I have been giving myself 25mg injections. It works for me. I am also on hydroxychloroquine (Plaquenil). Plaquenil can also cause hair loss. I started taking MTX every eight days instead of every seven. Every nine days starts an RA flare. I stick with the eight days. I also cut the Plaquenil to 200 mg daily from 400 mg daily. My hair is no longer falling out. However, my hair hasn’t grown since my last haircut. Unfortunately, it was the second worst …