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RA and release from cancer memories

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published on 2022-01-08 on Marys arthritis

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It has been three years since my last cancer. Through the surgeries, the chemo and the invasive radiation, I plodded along one foot in front of another.  And in all those moments,  I  was slowly being ground down into nothing. And at the same time I felt nothing. I kept my head down and did what was expected of me. I was exhausted. Bald. Drained. Gutted (literally). Nothing left. The daily reminder was a port in my chest waiting for the next infusion of chemicals.

Some would say I was lucky. I didn’t feel lucky. I felt that what I was no longer existed. I was so glad when that year was done. I wouldn’t have to hold on so tightly. I wouldn’t lose any more of me.

Lately I have been thinking about that time. I am no longer numb. I can feel those lost feelings now. My memories make me feel sad.  I mourn for the me that was and the time lost forever. Like waking up and realizing the dream was reality. I felt the pain of realizing I had cancer. I felt the pain and loneliness of treatment. I was no longer required to suppress my feelings. It was painful but it was also a relief.

My body  also has rheumatoid arthritis. And in spite of my cancers and the complications of one thing or another, it is  the one thing that is a constant in my life. Rheumatoid arthritis might not  kill me but it certainly makes me live with a pain wracked body. Every joint in my body is affected.

So, I suppose it is the RA that dampened my response to the cancers I have had. Having cancer treatment and RA flares at the same time is rough. Suppressing the whole experience was one way of living through it. My cancers are gone for now and I can finally feel relieved.   I expect that I have another year or two before another cancer shows up. It may be a repeat, but more likely, it will be a new one. However, in another year or two I will have regained my strength and my mojo. It has taken longer this time.  I will be able to handle whatever comes. After all this time I am finally recharging

Saying goodby is hard to do

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I found this little story on my web page marys arthritis. It brought back memories. I thought I would share.

I said goodby to Susan today.  She has had a very interesting time of it.  Her life was full.  No one can ask for more.  I knew her for a brief period.  I was glad of it.  It was an important period in her life as well as in mine.

I met her at a cancer support group.  She was angry as she had recently learned of a serious metastasis.  I had had a whirlwind bout  with a diagnosis of RA and sequentially two cancers.  I was trying to process as well as she.

I saw her as the chemo failed and as she was denied her favorites of swimming and yoga.  I saw her as the last chemo drug failed.  She lost her anger and frustration.  She seemed to mellow.  Then she moved on.  She became engaged in planning her exit.

The last day in our breast cancer group, we made bracelets.  She gave me hers.  She used red beads as I was wearing red that day.  We had our final hug.

She has been on my mind since.  Today was her memorial service.  It was amazingly wonderful.  I loved her and will miss her.  Today as I said goodby, I still had her with me.  She has her own special place in my heart.

Archie and Me

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I have no idea why I have spending so much time thinking about my oldest friends. I miss them. I feel sad for their tragic last years. Here I stand, the survivor. Alone with the memories that only we shared. It is up to me to remember them. I cherish the many experiences we shared. The reasons we became friends. Laughter and hugs. The important moments of our lives.

My oldest friend lived next door.  Archie and I grew up in a housing project build on the edge of town away from everybody else.  Massena, NY. Is a small border town with Canada.  Its claim to fame is its longstanding ALCOA plant which will be closing the end of the year. It was also a short boom town in the 50’s for workers who came to build the St. Lawrence Seaway.

My family shared a duplex with Archie’s family. We could communicate through the furnace room by tapping on our common wall. Our respective kitchens were off  our furnace rooms.  My family did not have a phone. Archie’s family had a party line.

Archie was one of seven children. He was number four. We were a little gang. Archie, me,  my brother,  Dick, Sally, Penny and Clifford. We played in the area woods and surrounding farmland. Picked wild strawberries.  Built our camps  in the summer woods and our igloo-like snow camps in the winter. Good times. Played marbles. Hide and seek starting from the one tree in our yard.

Neither of our families had a car so we walked everywhere we went even in our freezing winters.  We walked to the local theater for the Saturday matinee. Cartoon, superman serial, movies. For 25 cents we had it all plus popcorn. On the way home we played the adventure movies.

I went to a Catholic school through the fifth grade. Then the school started charging tuition.  My parents could not afford it. So, I was sent  to public school. The nearest school was about 2 miles from home.  It was a neighborhood school. No buses. Our problem was that we did not live in the neighborhood like the other kids.  Archie and I walked together. And we walked home for lunch, too.

Dick, Sally, Penny and Clifford were lucky as a grade school was built across the street  from our house and all they had to do was walk across the street.  The school had five grades. No room for us.  Archie and I walked. Up the hill away from the project.  Down by my parish church. By a street of nice houses. Up a steep hill.  Down the railroad tracks.  Up the short street to school and our sixth-grade teacher, Ms. Hourehan.

Archie had sandy hair and brown eyes. He was intense. Just like me.  He was taller than me. He eventually grew into  five-ten.  He has a small strawberry mark on his left cheek. He wore glasses. We were easy together. Like we had always known each other.  We had since we were three.  

Archie was the first boy to kiss me. It was more a complaint from me that he hadn’t kissed me. So, he did. That took care of that.

Our classes and our lives gradually  took different paths. Archie left Massena and so did I.  He married, had two children and was living in Texas. Some where along the way he realized he was gay.

I was living here in Albuquerque with my family when I got his call. It always makes me sad when I think about it.  He had AIDs. He had AIDs before the availability of those lifesaving drugs. He had gone home to Massena to die. We talked. After all those years we picked up where we had left off. He was my friend.

A few weeks later I received a call from Paul, Archie’s partner. It was a very sad time for me. Archie had died. He was the only friend who really knew how we had lived.

Archie and I had high aspirations in our youth. The world was full of hope. Little did we know just how poor we were.  How ill equipped we were to live our lives.

I talked with Mrs. Akey, Archie’s mother. She said Archie didn’t know his place. He was too big for his britches. She made me so angry. Archie like most other people was merely trying to make a better life.  He should have been praised for that. He just didn’t have the tools that so many other people had to succeed.

I was lucky. I loved to read. I owned only one book when I was growing up, Little Women.  The message to young girls in Little Women is totally missed in the charming movies we see today. If you are a little girl and have only one book, Little Women is a good one to have.  It was enough for me along with the public library.  I loved learning. I was fortunate to have more tools to make a better life than Archie had. And I am grateful for my life. I feel it is my responsibility to have a successful life for Archie. To all those who think housing project kids will never amount to much, I say you are wrong. Look around you.

Some say I have a good attitude. I have struggled through the treatments of three different cancers, but I am really a plodder, doing what I am told until they are done with me.   I am not good or bad in any way. Nor should a cancer patient ever be labeled as such. Anyone who has cancer does the best they can.  Now I am thinking of my two best friends in nursing school and their very sad cancer stories.  Stories for another time. For now, I would like to think about the happy times Archie and I had in our youth

Mrs. Hughes, breast cancer and me

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A few nights ago,  I watched a Downton Abbey episode.  Mrs. Hughes, the housekeeper, found a lump in her breast. Mrs. Hughes was frightened, and she was anxious. Cancer was a word that drove a chilling fear into the heart of someone given the label as it does today. Mrs. Patmore, the cook and her friend,  told her she needed to see the local doctor, Doctor Clarkson.

There was no health insurance. Medical services had to be paid up front. Wages were low. Treatments were slim. Radical mastectomies, not common today, were the only treatment. Radical mastectomies removed the breasts, the lymph glands and frequently the muscles underneath. The patient usually died anyway. ( In 1970 fifty per cent of women with breast cancer were still dying.)  Mrs. Hughes had reason to be scared.

Dr. Clarkson drew fluid from Mrs. Hughes breast. He sent it off to the lab. There were no diagnostic  tools like MRIs or CT scans to provide clues. They settled into wait.

She returned with Mrs. Patmore to learn the results from Dr. Clarkson.  Mrs. Hughes had negative results. She could breathe. She could carry on with her busy life. She could be grateful.

My breast cancer was picked up by accident. My RA Doc ordered a chest CT scan and there it was. Something that shouldn’t be there.  A biopsy was ordered  to see what this something was. It was positive for malignancy.  An MRI was ordered, and I was sent to a  breast surgeon.

At the time I did not feel fearful or anxious. I was two weeks out from stage three thyroid cancer surgery. My RA was not under control. I was numb. I did as I was told. I walked through my days as a zombie. Fortunately, my cancer was in its early stage. Surgery, radiation, and an aromatase inhibitor was the treatment plan.

Although my breast cancer treatment has its own story, my cancer was squashed. I had more tools in my toolbox than Mrs. Hughes. I had insurance. I had diagnostic tests and I had a treatment that did not leave me a cripple. I am a lucky woman.

The trauma of cancer treatment

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My third cancer was the most difficult for me to tolerate. The whole thing started when my RA doc wanted to follow-up a spot found  in my uterus on a CT scan. I was going to start the biologic Actemra for my rheumatoid arthritis. I went to a gyn doc who scheduled a biopsy. She said it probably wasn’t a problem since I had no vaginal bleeding.

I had been scheduled to get the results several weeks out. I didn’t worry about it. Then her office called and rescheduled me for an earlier appointment.  I went in. The doc told me it was cancer,  and she would refer me to a cancer doctor.  She said she didn’t know anything about this cancer. She left.

My son was driving. Back in the car I googled uterine serous cancer. That is how I found out that it was a rare cancer similar to ovarian cancer in its behavior. It was also caused by the Tamoxifen that I was on for breast cancer. I was stunned.

This was March and the beginning of a roller coaster ride that would last the rest of the year. How did I survive? I suppose I did it by being in a fog and doing as I was told. I didn’t think. I plodded. But at the same time,  I had a deep worry about having the vaginal radiation. And I was right. It was overwhelmingly invasive.

It has been three years since I completed my treatment of  robotic surgery, chemo,  and vaginal radiation. And it hasn’t been until this year where I felt the trauma. I recently saw the CT scan that showed the 2 inch by 1.5 inch mass in my uterus. A malignancy. An invader.

I feel I was invaded, stripped clean, poisoned, and humiliated.  That is how I feel about my treatment. Yes, I feel cured. So, I should feel grateful. I don’t.

This year, three years later, I worked through my feelings. I am done. However, I have a corner of my heart that has a little sad cloud that is here to stay.

Mesothelioma Resources

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Http://mesothelioma.com                                                                           This site includes information about asbestos exposure, how American military members were exposed over time, treatment options and legal assistance.
Http://www.asbestos.com/mesothelioma                                                         Asbestos.com is a resource site that provides information about this devastating cancer. The site includes the names of doctors specializing in treatment and lawyers managing legal cases. Mesothelioma is caused by ingesting asbestos into the lungs. This asbestos is usually found in the work place. 

 

When you have had enough treatment

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I have had three entirely different cancers and three different  radiation treatments all within four and a half years. I had to count that twice on my fingers to actually believe it.

My first set of radiation treatments was for breast cancer. It was this set of treatments that came back to haunt me this winter. But that is not my focus now. My treatments were at Kaseman’s MD Anderson. I went every day for three weeks at double dose instead of the usual six weeks. I had been  reassured that the results were the same. I had to drive across town. It was like a field trip. I knew that once I got there, I could have a good cup of coffee. They had a Keurig coffee machine. It was a carrot for me, and it worked.

I would sign in. Change into a gown. Lock up my wallet. Then I would sit with other patients to wait my turn. This is the part that sticks with me. It was in this room that I listened to the stories of other patients. Someone told me that the only time anyone talked was when I was there. I am glad that they did talk with me.

My memory is about a willowy, woman in her forties, brown hair, a few freckles across her pale face. She had been a teacher. She had metastatic cancer and had been through a lot. Currently, she was being radiated for cancer in her leg. She said her friends told her that she should travel while she had time. She said she just wanted to stay home and see the people she knew. Then she made a statement. Something she had been considering.  She sat there and said this is it. “No more. I’ve had enough.” She was done with any new treatment. She surprised me. She was young. Of course,  she was right. She had taken all the treatments they had given her, but she was tired. No more energy. She was done.

When I think of cancer’s power, I think of her. She had done her best. She was exhausted and could do no more. It really wasn’t about fighting or winning. It was about staying alive. It was about staying alive until there was nothing left. Like she said, she was done. Cancer’s a tough one.

Complications from Breast cancer treatment continues

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I am recovering. Surgery was done  on 13 December. It was a surgery to debride an abscess caused by necrotic breast tissue due to radiation. As I said before, it was day surgery at Presbyterian Rust Hospital in Rio Rancho. I have had several surgeries there and always feel safe and well cared for.

There was not much in the way of post op pain, so the start of my recovery was good. The scary part, especially with breast surgery, is when you take off the bandage for the first time to see what you have left. It is not like it is  in the movies where you are seen lying in your hospital bed and the doctor gently removes your bandages. He looks at your wound in a reassuring manner and you feel that you will be okay. You are home. Alone. In your bathroom. You have a blue binder holding you in.

You also have the addition of a drain that must be managed. The drain is called a Jackson Pratt. It is a plastic bulb attached to a tube that goes to your wound. It had a pop up cap. My job was to empty it daily and record the bloody drainage. Next squeeze the bulb. Replace the cap and gentle suction would do its work. The tube is secure. I don’t have to worry about it falling out.

I take off the binder. I start to remove the dressing. I was told by the surgeon that my surgery would remove my nipple. I did understand the need. My cancer had been very close to it. Even so, it is a part of my body I have always had. I am being taken apart piece by piece. Mutilated.

I finish taking off the dressing. It looked like my breast had been held up and half had been loped off and then stitched up. I avoided looking at it after that.

The drain came out. I seemed fine. Then I saw an opening in my incision and as I leaned forward blood started leaking out in a good stream. Oh, dear. That was when the irrigations started. I was instructed to inject 10 cc saline with a blunt nose needle into the wound opening twice a day. This was starting to be discouraging.

I was worried that I was going to need a mastectomy and they would finish the job. No more breast.

One day I spiked a 102 temp. The second wound culture came back positive and I had developed a bad cellulitis. The irrigations continued. I was on a 10 day regimen of Keflex. Finally, I began to make progress. During all this I had gotten used to my new breast and became okay with it.

It is 5 January and irrigations continue. My breast looks much better and I feel like I am going to make it. This was difficult to go through. The surgeon put me to work. It was not easy for me to do but I did it and I think I am getting better because of it.

Cancer and more surgery

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My surgery will be coming up soon. When I learned I would need it, I felt depressed. I had been going to the wound clinic once a week and I was irrigating and packing the wound twice a day for several weeks now. I thought these measures were working. They weren’t. I remember the doctor saying if I needed surgery that there would be little left. Another dip into depression. So, I continue the care and await the upcoming surgery.

I had breast cancer in October 2013. I had surgery and then a series of radiation treatments in 2014. The radiated tissue has become necrotic. A common occurrence that I didn’t know about. The dead tissue needs to be removed.

This surgery is considered a ‘day surgery’. I will go home the same day of the surgery. My son becomes the nurse. The cost of a nurse or nurses is eliminated when patients are sent home the same day of surgery. It is a big improvement on their profit.

I am fine. My body is battle scarred after three cancers already. I am also amazingly resilient. I will heal. I will adjust. And then I will carry on. We all do that. We have no choice.

Radiation of the breast can cause the tissue to become necrotic.

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Radiation of the breast can cause the tissue to become necrotic. I learned this a couple of weeks ago when I developed a foul smelling lesion on my right breast six years after radiation for breast cancer. The breast cancer surgeon knew instantly what it was. I had dead, rotting tissue in my right breast. The formation of necrotic tissue following radiation is a common occurrence. I was sent to a wound clinic.

A wound clinic manages wounds that are hard to heal. These nurses are the experts. They know everything there is to know about the care and healing of difficult wounds. My wound is about an inch in diameter and it is quite deep. Initially, it was foul smelling. It still is but not as bad.

I was given the equipment to treat my own wound.  I irrigate the cavity with a blunt needled syringe loaded with  Dakin’s solution, an antiseptic liquid. Then I insert gauze dampened with the solution and laced with Santyl and cover the wound with a dressing. The Santyl is a collagenase ointment which dissolves the necrotic tissue. It cost $95 with insurance. This is not for a weak stomach. But I am a nurse and have always been able to do what needs to be done. I do this treatment twice a day. Morning then again before bed.

I ran out of the Dakin’s, so I found a recipe online. It was provided by a doctor to save his patients money. This makes a good wound disinfectant. Boil four cups of tap water for fifteen minutes. Add ½ tsp baking soda and almost a tablespoon Clorox. Store in a clean glass jar for up to a year. Works great and beats paying $20 for a bottle.

My return visit to the Doc wasn’t encouraging especially after all my work. She said there is still too much dead tissue in my breast so I would need surgery. I would lose my nipple and my breast would be  much smaller. Not quite a mastectomy but almost.

I have two weeks to get ready for the holidays and I have been instructed to carry on with the treatments until surgery.  Joy. Joy.