All posts tagged: postaday

More about RA drug Actemra

Response to expect  with Actemra                                                                                     At 24 weeks of weekly injections, 69% of those with RA had a 20% improvement in  symptoms. Additionally, 47% had a 50% improvement and 24% had a 70% improvement. That leaves 31% with no improvement. None of the biologics work for everyone.

Stronger with exercise

  October 2019 I am amazed that I feel so much better. It has been a gradual process, a yearlong process. Recovery from the treatment of a rare uterine cancer is long, discouraging at times and scary at others. I say scary because the fatigue and the use of a brain that seems murky and sluggish is not something I would want to live with permanently. My fear was that this mental and physical slowness might just be permanent. So, I am relieved, quietly jubilant. My spark has re-ignited and I feel alive again. I am now able to go to the gym without being worn out for the day. My legs are stronger. I am becoming sturdy. I am reading again. I just finished Educated by Tara Westover and thoroughly enjoyed it. Her evolution from a brain washed, isolated child into a creative, educated and accomplished woman is inspirational. In the last few months I have found a comfort zone in riding the recumbent bike for 45 minutes three times a week at Planet …

Plaquenil and the eye

I have a question about the drug, Plaquenil, AKA hydroxychloroquine. My interest stems from the book I am writing, Nurse Mary’s Guide to Rheumatoid Arthritis. After reading several additional medical reports about Plaquenil, I realized I needed to look further and to expand its section in the medication chapter of my book. Another reason for my interest was that I had been taking Plaquenil for six years for my RA.  I was taking it in addition to methotrexate injections and Medrol. I had  also been taking it while I was taking tamoxifen for breast cancer. I no longer take tamoxifen as I developed a rare serous uterine cancer associated with using the drug. None of my doctors questioned the risk involved in taking both drugs. I also made the mistake in thinking Plaquenil was a mild drug. In fact, it does treat mild RA and more aggressive RA when given in combination with other drugs. The drug itself is not mild. Hydroxychloroquine was developed as an antimalarial in 1955. It was a refined version with …

I’m Back

I have completed chemotherapy and I have completed radiation. At this point I think I am cured. It’s been a long year. I am grateful as I have friends who are not as fortunate. In addition to  being diagnosed with another cancer this year, my computer died. The new one arrived Friday. It is nice to be up and running again. My RA doc has moved on to the VA. She is going to be working on research projects as well as seeing patients. I have followed her as I am a Vet.  She is happy. She had spent several of her student years working at the VA and appreciates its culture. She has ordered Voltaren Gel for the pain I have in my feet. The pain is a problem for me when I go to bed. Voltaren is a topical gel of Diclofenac, an anti-inflammatory. It arrived this morning. I will let you know if it works for me. Albuquerque has been one of the cold spots in the nation. It’s been down to …

Living with RA Disability

  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

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

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

  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

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

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 …