Latest Posts

I’m Back

Published by

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 2 degrees at night and the teens during the day. We’ve had three inches of snow here. Thankfully, all is improving. The nights are back up to the 30s and days to 40s. I will never complain about our lack of snow again.

I hope all is well with all of you. Working with a keyboard is so much nicer than going for chemo.

 

Living with RA Disability

Published by

 

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 now, let’s look at some simple changes. Foot pain is a big issue for me and for many with RA. Before I changed how I dressed my feet, I could barely walk. I saw a podiatrist who recommended shoe changes and customized inserts. I started out with a selection from a New Balance store and then progressed to wearing special shoes with custom inserts. My feet still have problems, numbness and night pain, but on a day to day level my feet are comfortable, and my mobility is normal. It was a simple change but had a dramatic effect on me.

I am on chemo for a current cancer. Fatigue is a big problem for me as it is for an RA flare. Keeping clothing uncomplicated can save a lot. Nightgowns take less energy than does putting on PJs (yes, it is that bad). Summer dresses such as wraps are easier for work, fewer pieces. Pull ons and pull overs make summer living easy.  Yes, we need a certain number of zippers and buttons but adding slip ons makes life easier. Even with button up shirts unbuttoning the top buttons and slipping over the head gives fewer buttons to close.

Shoulder pain is its own problem. Loose clothing is easier to manage as are knits instead of fitted jackets. It is important to us individually that we look our best.

Consider it a personal challenge to select clothing that is easy to wear as well as fashionable. It will boost your spirit as well as making the morning routine less stressful. These are just a few suggestions to get your mind on a tract that will make life easier as well a keep your fashion sense satisfied.

Look Good Feel Better

Published by

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. She used me to demonstrate for our group. I was not well. My energy level was non-existent. Yet, I looked forward to this and enjoyed every minute.

I came home with a cosmetic bag full of expensive goodies and a big smile on my face. I’m still bald. I’m still weak. But I had a good moment. A happy moment that will repeat itself every time I use any of the cosmetics in my cosmetic bag full of goodies.

The Look Good Feel Better program started 30 years ago. A doctor asked the president of the Personal Care Products Council how he would arrange to have a makeover for a cancer patient who refused to come out of her room because she felt she look horrible. Cosmetics and a cosmetologist transformed her look and her outlook.

With such profound results, the idea was presented to the Personal Care Products Council membership, the nation’s cosmetic industry leaders, who immediately offered funding and cosmetics. The American Cancer Society joined the effort as did the Professional Beauty Association. Today Look Good Feel Better is offered in every state in the union including the District of Columbia and Puerto Rico.

The program is offered once a month at the Rust Cancer Center and it is offered at most cancer centers in Albuquerque. It is well worth the time and energy to go.

 

 

 

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

Published by

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 initial infusion, my scalp began to hurt. It hurt on a level of 7-8 on the pain scale. Sharp pain. I found that when I gave some a gentle yank, if fell out and the pain disappeared. Over two days I went from a person in pain with an obsession to a bald woman with a happy head. I was amazed that I was so glad to be rid of it. Besides I have a well-formed head. Looks good bald. Cream. No Make-up. Just me. Aloe Vera with sunscreen to my head.

This was my experience. Being unique people, we will all have different experiences and we will make different choices.

I enjoy this cap.  cotton, comfy, summery.

The thought of being bald was a tough one, but now my head has about 12 different head coverings including a fun new wig and it really isn’t so bad after all.

A few resources you might enjoy.

Hair Loss                     the American Cancer Society              https://www.cancer.org

Why and How Hair Loss Happens    Breast Cancer            https://www.breastcancer.org

12 Ways to handle hair loss from chemotherapy   WebMD                https://www.webmd.com

Chemotherapy and hair loss: what to expect during treatment   https://www.msayoclinic.org

the joy of roses

Cancer Number Three and RA

Published by

 

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 not practical in my situation. So, my old routine of activity alternated with rest works well. I read the Washington Post over coffee and then make breakfast. Next is the activity of showering and dressing. Showering and dressing is an activity when in cancer treatment or in an active flare (some of us are in a variation of a flare all the time.) Next is a short rest period with rereading Mukherjee’s book, Gene, or writing a letter to a friend.

Next activity for me is to check the garden. Fill the feeders and the bird bath. Water the container plants. Next will be a rest period while I check email and google something I’m researching, or I just watch the local squirrel munch on the zucchini plants. He is an incorrigible, determined squirrel. It has taken me this long to realize he is the culprit eating the zucchini.

My cancer is uterine papillary serous carcinoma. It is a very aggressive subset of endometrial cancer affecting 5-10 % of those with endometrial cancer. It behaves similarly to ovarian cancer which also affects the serous cells. Tamoxifen can cause it. My immune system is compromised with RA. Close relatives who have colon cancer match genetically. My brother had colon cancer.  Serous cancer was isolated in 1982. Before then it was lumped in with endometrial cancer. It has a high death rate whereas endometrial cancer doesn’t.

Treatment is aggressive surgery, six cycles of Taxol/ Carboplatin, and brady cuff vaginal radiation. For me that should finish it off. However, you never know with this cancer.

My oncology nurse, Trisha, recommended that I premedicate with the Zofran. I have done so. Nausea is light, but I have no appetite. Protein shakes will probably be the answer.

It is almost two months since my diagnosis with this cancer, my number three. Initially, I was scared. At the time I understood that once again my world would be consumed by things cancer. It is. Tomorrow, I see my hair stylist, Audry, who has experience with cancer patients. She will chop off my hair very close to my head. Hair loss starts about ten days into this chemo. It is better to cut it than have it come out in clumps. My Cathy sent me an adorable cap of daisies on a pink background. Tomorrow I will start wearing it.

My summer and fall have been mapped out for me. I know what to expect. I know where I stand. I will be immersed in this cancer in my life. I am good. I am okay with it.

Cancer Surgery Number Three

Published by

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 when I was wheeled toward the OR for major robotic surgery.

After time in the recovery room, I was brought to a private room and to my sons. All was well. The good news was that the cancer had not spread. Caught early. Still I had to be catheterized in the middle of the night. Not much there. Bummer. The nurses kept pouring in the IV fluids. Not much in there to come out. I was dehydrated. Next day I peed on my own. It was my pass to go home. My boys took me home. Very glad to be in my own bed in my own room.

I felt crampy but otherwise I felt fine. For robotic surgery five small incisions were made across my upper abdomen. The middle incision, a little larger than the others, is where the camera was inserted. The other four incisions were entry points for the robotic arms. I had two IVs as a safety measure.

After surgery I was given IV ibuprofen. I loved the stuff. I had not heard of it. I think it is fairly new for post op patients. With my joint pain being relieved, I felt very good indeed. Mobile. I wish I had some right now.

I started thinking about the next step, chemo. It will start in a few weeks. My doc has ordered a ton of meds including Ativan and two strong medications for nausea. This suggests to me that I will not want to eat very much. The chemo is the standard for this cancer consisting of two drugs. It will be given every three weeks for six doses. That will take me up to October. My year shot again. Sometimes I feel that I have to go through an awful lot just to stay alive.

Now I was getting depressed, but I continued on to thinking about the third part of the treatment. Brady radiation. It is where a devise is placed in my vagina and then the radiology oncologist places a powerfully radioactive material into the devise. I will be left alone for about 15 minutes. Then the radioactive material and the devise will be removed. That’s about all I know about it for now. Maybe it is too much to know. Not a comfortable type of a treatment. Now it takes me into November. I am definitely spending my year as a patient. I became depressed after thinking through the timeline. Big mistake.

This thinking does not work. I need to stick with the one day at a time theory. I can handle that. Divide up my day. Make chocolate bread. Watch the squirrel and the chipmunk. The quail. Write. Knit a bit. Tomorrow will come soon enough. See. Happier already.

 

 

 

 

 

 

 

My RA and CA and me

Published by

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 better all the time. Getting out of the pool is also painful and getting dressed is not much better. By the time I get to Trader Joe’s I have worked it out somewhat. Moving can be good for some pain, but not for others. My body is clear to me about the difference. During my hip replacement ordeal, I didn’t see the inside of a Trader Joe’s for six months. I refuse to miss this opportunity.

A coping skill that I have learned to conserve energy is to have my grocery bags carried out. Staff are always willing, and I always give them a few dollars. They protest but I insist, and I feel the better for it. It doesn’t sound like much but pushing the cart out, unloading the bags and returning the cart sap needed energy. It is wise to use the opportunity of help when it is available. Tipping isn’t necessary so if your budget is tight, don’t tip. They will still smile and are happy to be helpful.

I am in an RA flare. I have learned to manage. Well, I feel it is managing. Methotrexate(MTX) is a God send for me. Once I got past the initial side effects and on to the injections, it has been a maintenance drug for me. Plaquenil complements the MTX. Tramadol and Gabapentin help. Medrol gets me through flares along with cannabis cream for my feet and hands. I always wear custom orthotic shoes. I sleep on a heated mattress pad, summer and winter. I do all that I can.

The serous uterine cancer that is presently in my body is also genetic especially if you have a close relative with colon cancer. My brother died of cancer of the appendix.  Of course, Tamoxifen is the main culprit. I always figured I would have another cancer, a new one. I had not even heard of this cancer. I believe that there is no point in worrying as the thing you are worried about is not the thing that is lurking in the bushes, a thing most dreadful and a thing waiting to attack.

My RA, my CA and I are heading back to the garden. Time to move one plant into a bigger pot and put a new plant in the old pot. Back to living in the now. A very good place to be.

RA and Another Biopsy

Published by

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 are at increased risk for a fatal outcome with a cancer diagnosis. So far I have proved the statistics wrong.

My experience in day surgery was a good one. My nurses were professional, pleasant and helpful. I was well taken care of. My OR experience was so much better than the one I had for my hip surgery. My doctor had been concerned about my hip during her surgery and made sure I was comfortably positioned before putting me to sleep. My recovery was uneventful. I rested for a day or two realizing that my age warranted the rest time.

I am much happier alternating restful activities with motion. Sitting too long is not good for anyone. I have learned with my RA that pacing works. I have a more satisfying day when I alternate rest with action. My shelf life is longer.

We have had extreme winds the last few days. It hasn’t been safe or comfortable to work outdoors. I have great respect for the trees, plants and wildlife in times like this. Hopefully, the winds are calming down today. I will take a trip to Lowe’s and walk the garden aisles with my cane looking for plants that I need for my garden. Coming home I will take a nap. Then I will fill the feeders, watering holes and start the planned watering.

Life goes on even during a crisis. I have the hope that this is merely a blip in my life’s experience. If not, as my son told me, we will get through this one day at a time.

RA and the Bread Machine

Published by

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 love it. One of my favorites is the honey nut oatmeal bread. Simple ingredients including honey, rolled oats, whole wheat flour, protein rich bread flour, cranberries and walnuts. Truly a healthy feast. Great toast for breakfast.

My reasoning was that I like fresh, whole grain bread for breakfast. There is no better way than to make your own. I had lost 25 pounds during my hip odyssey and continue to lose although at a slower and healthier rate.

The Arthritis Foundation says we should eat whole grains, fruit, and olive oil. My bread machine also produces dough for Focaccia. Left to rise on a peel, pressed with olive oil and fresh herbs, sprinkled with coarse salt and baked on a baking stone in a nice hot oven. A tasty addition to supper. Pizza is also good and quick to make with a fresh tomato sauce and plenty of mozzarella cheese plus pepperoni for those who like it.

When I started making bread in December, I was still at a time in my recovery where it was hard for me to stand for more than a few minutes at a time. I used to quickly measure and toss the ingredients into the machine, turn it on and let it go. Now my hip is much better. I can enjoy the process of my bread baking. I have found specialty items, explored the thoughts of other bread bakers and experimented with new processes.

I am now in an RA flare. My feet rebel as do my hands and shoulders and the rest of me. I have started a Medrol dose pack. I still feel lucky to be involved with creative activities that keep my mind happily engaged.  I did have orange bread (made with orange juice and orange peel) for a snack today and plan on pizza for supper tomorrow night.

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

Published by

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 haircut my hairdresser has ever given me. MTX and Plaquenil can also stop the hair from growing. It would have been lovely if my hair had stopped growing after the perfect haircut. Not to be. I now have thin hair with a terrible cut. It is short, so I am reluctant to have it reshaped. So, I will wait and see. I see my RA doc in a month maybe she has something to offer.
I am on 1mg folic acid and a 50mg B-complex. Any suggestions?

It is not the end of the world. Fortunately, it did stop falling out. Eventually, I will see my hairdresser for a better shaping. Then if it never grows again, I will save a lot of money at the hair salon.

Five years after diagnosis