Friday Nite

Going to dinner with the girls tonight and then on to beading. I am feeling much better this Friday. It could be the fresh peach slices and blueberries I ate today.

While receiving radiation treatment today I wondered if I should be using some kind of positive imagery of radiation doing its job. I kind of drew a blank on what that image would be. I have been told that the radiation treats areas that have less blood flow and are therefore less susceptible to chemo drugs. I have been clearing my mind and breathing to aid holding "the position" for treatment. My poor arthritic neck and shoulders don't like it at all. I have to hold it for about 18 minutes while the various treatments are applied and the techs use sharpies to draw dotted lines on my skin.

I guess I will talk to the techs and see if they have any visual images that represent the radiation.

Its still me in here

This past weekend I went to birthday party for an old friend. We first met as newly weds and impending new mothers. Our husbands had been friends and we enjoyed each others company, too. Now, years later, our daughters are life long friends, too. Many of people at the afternoon party were neighbors and work associates that I did not know. My sparkle factor was not great due to recent chemo and radiation. I felt the situation demanded that I extend myself more since few knew me pre-cancer. My friend and her daughter did a lot to introduce me as a very active friend of longstanding to the other guests.
So here I am with my little embroidered denim cap, TED hose and walker trying to be me. You know me - sexy, healthy, graceful, fun.

Reading local humor columist John Kelso helped me focus on how I feel
"No telling how long the recuperation will last. But I think I'm going to make it. So, stop looking at me like I'm dead. It's still me in here, even though I sound a little funny. " http://www.statesman.com/news/content/news/stories/local/2009/07/28/0728kelso.html
That message is one for me - its still me so be my best self.

Glad that day is over

I had a bit of a disappointment Friday. My portacath (the box under my skin that connects the chemo to a vein) is not working right. A dye study confirmed that the vein has scarring that limits circulation. They can no longer draw blood samples through the portacath. I will have to discuss this with my oncologist.



Friday was a very long day for me. I slept through my chance to go to bead and bitch and visit with artists in residence cattle dogs ND and Rosie.

I also missed Texas Music Matters feature of Powell St. John's new CD at noon on KUT.



Since I am going for radiation treatment each week day morning I only get to see my dogs on the weekend. Molly always needs reassurance. Second banana, Molly, worries she is not getting her share of attention. Charley is going to work in some evening play dates for me. I need my dog therapy, too.

The New Schedule

I started the new chemo drug Cisplatin on Tuesday. After a blood panel to be sure I was healthy enough, they gave a lot of fluids to protect my kidneys, then the Cisplatin. I felt as though I were on fire. No vomiting but I get what feels like a hot flash, then sweats and then I am cold. I am fatigued, too.

Wed I started radiation for the breast. I had to lie still for about an hour and half while the team marked me up for directed radiation. It was hard. Partly because I was a body section piece of meat and partly because it was cold and uncomfortable. I used the art of Zen for cleansing breaths and dreams.

Thursday everything was set up for me and the procedure went fast.

Friday I go from radiation back to the Shiver's Center and on to Xray for a dye study to find out why my portacath is not giving blood return.

With the new radiation schedule (every weekday morning at 9:30 am) I only get to see my fur kid dogs on the weekend.

I am really tired and going back to sleep now.

Hug your dearest ones, Peggy

Self Pity Stopped

Saturday morning I was reading a post from someone venting about how they were stuck at home (http://abc-survivors.net/connect/ ) . Their artificial lower leg was too long and they were going to have to wait a week for the error to be fixed. I know its good to vent but I started feeling sorry for myself, too. I am not driving, yet, and depend on Charley and others for rides.

Then friends arrived with a favorite mystery writer books and a high quality photo book about crop circles. Whether you believe they are messages from aliens or human stunts, the photos are beautiful and the designs are elegant in this book by Steve and Karen Alexander.
In the afternoon friends called with plans to eat out (http://triumphcafe.com/ ), hear live music and see a DVD movie (Australia - Hugh Jackman with his shirt off http://dev.australiamovie.com/ ). We had Vietnamese food, listen to Klezmer music. The whole band and belly dancer were there. Most of the band looks like my age or older. The singer is a young woman in her early 20's with a wonderful voice.
The British Shorthorn cattle (wikipedia has them) featured in the movie were one of the breeds of cattle I have experience driving with an ACD (http://ACDCA.org and (http://blueheeler.com/RiverForth/River_Forth_1.htm look down to the second photo). I was kind of disappointed they did not have an ACD to help them. I am still a big Baz Luhrmann fan. Strickly Ballroom and Romeo & Juliet are favorites of mine.
For All Mankind is showing at the LBJ Library. Maybe I will feel well enough to see it this week.
I am worried that I will be ill from the Cisplatin Chemo on Tuesday and vomit on the radiologist's equipment Wed. I have done it before during an earlier chemo period so its not totally paranoid of me.
Well back to positive thoughts of feeling well.

Chemo Brain

I start the new chemo next Tuesday and radiation treatments the following Wed. Next week is going to be big.

Its frustrating and worrisome. Names and words I normally could recall have to be researched. Its like Swiss cheese. There are odd holes in my memory.

I used to be able to recall native and common landscape plants easily. Many I still can recall but plant names I really should recall, I can't. I can recall their ecology and my experience with them, but not their name. What do you call the little white bugs that attacked my hibiscus? I know that spraying diluted soap or detergent on the plant gets rid of them.

Writing this blog I can either find another word or phrase or google to find the word I want. I have been told that around 6 months after chemo stops, the chemo fog should lift. However, difficulty multi-tasking, organizing and concentrating started before chemo. It could be an effect of the cancer and now combined with chemo. Word loss became significant after chemo started.

Now I write everything down. When I first left the hospital with my handful of pills my bedside journal recorded dates and times I took each medication. It really helps to have Charley with me on doctor visits. He remembers.

http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp

I wish I knew how long these cancers were developing. I new understand that sarcoma is often mistaken for a sports injury. I spent a lot of time in confusion and pain thinking it was my arthritic knee. Then I read the stories of Adult Bone Cancer Survivors. Some people had back pain or other pains for years before discovering the cancer! Often their cancers were not high value (aggressive) like mine. I would have been dead if I had waited much longer. I am sure of that.

http://www.abc-survivors.net/

Limbo

I feel as though I am in limbo. I am waiting for my oncologist to make arrangements for the new regime.

Meanwhile I have been rocked by unexpected deaths (see Bittersweet). Then on Monday evening I saw a brief note that gifted dog trainer and herding clinician Bob Vest had died.
http://russellfh.com/obituary.aspx?MemberId=60765&MName=Robert%20Eugene%20

Bob was magic. I was one of his many ( hundreds or thousands) of students. I was fortunate to attend several clinics held by Bob and participate in an American Herding Breed Association trial he judged. I learned about myself and received encouragement to keep on working from Bob. Like the best teachers, he put me into situations that exposed my weakness and help me figure out how to overcome them. This city girl had a long way to go and still does. I feel that if I had known more, I could have learned more from Bob.

OOPS New Plan

The sarcoma specialist notes have just been sent to my local oncologist. Apparently he does not want me to have methotrexate until I have less (how much less?) edema in my leg.
At 4pm I got a call from my local oncologist that I could have the Cisplatin as an out patient at the infusion center.
I would spend most of the day at the infusion center and go home at night.

They would administer it once every three weeks. I would go back to MD Anderson for evaluation after two treatments.
Cisplatin does depress white blood cells and has other side effects.

Bittersweet

I spent Sunday with old friends. Many had not seen me since I started chemotherapy. I currently have eyebrows and eyelashes and wore a hat with a brim since it is sunny Texas.
The occasion for meeting was a celebration of life and memorial to an old friend who died from an accidental fall last Monday. I don't know much about his death except that it took all of us by surprise.
Although it is a big effort for me to get out, walk around and socialize, it is good for me to do that when my immune system is working. I think the pain medication makes me a little dull, it was great to see and talk with old friends.
We are all hitting the health challenged phase of life. Most of us were very physically active with sports, white water caneoing, climbing, exploring caves and driving long distances on the edge of consciousness in our youth. Now cycling, hunting, walking and, for me, dog sports (agility, conformation, herding and driving across the state and country) replace those activities as we glide to senior status. Still a bunch of interesting active risk takers.
Tomorrow I am scheduled to begin Cisplatin and a high-dose Methotrexate while in Brackenridge Hospital. Both are sarcoma drugs but methotrexate is also used against breast cancer. Since I have both, both need to be addressed. Its tricky. I also need to start radiation for breast cancer pretty soon. That would be 5 days a week for 6 weeks. I am not sure how we will juggle rechecks at MD Anderson with that schedule, but I am sure we will figure it out.
Since my white cells will be depressed after the chemo, I need to limit my social contacts to health adults especially until my white cells rebound.

International Sarcoma Awareness Week: July 18-26, 2009.

After my donation to the Liddy Shriver Sarcoma Initiative I received my Sarcoma awareness bracelet in the mail today.

You can donate at http://www.team-sarcoma.net/team-sarcoma-bracelets

I will restart chemo treatments next week. I have nausea and mouth sores to look forward to. It was nice to spend time this weekend with friends at Bead n Bitch and just hanging out. I have a beautiful new necklace, too.

My CT scans don't show anything new. The chemo is to prevent any cancers too small to detect from growing. I may start radiation later this month. I just don't know yet.

Since I feel pretty healthy right now, I feel as though I am standing on a precipice looking down at a hazy valley that is about 6 months long.

Sunday I will be going to the 1st Memorial for a friend who died unexpectedly last Monday. It was an accident. Old friends from our younger days plan to meet and reminisce with his adult daughter. He was living in a cabin on acreage along the banks of the Llano River. I fondly remember my last visit there. It was another hot summer. We put our folding chairs in the river under the shade of several large pecans. I wish I had seen him more recently. I hope he knew that he had many friends who will remember him and miss him.

Gratitude

Gratitude is what is on my mind.

When I was first diagnosed with the cancers friends poured into my hospital room and held a 61st birthday party for me. All I really recall are lots of flowers and faces. I was on some pretty heavy pain meds.

Today outside my door I have a beautiful hibiscus that has bloomed most of the past year. It arrived for my birthday while I was in hospital. I wish I knew who gave it to me.

I received many cards and letters of best wishes from friends. Many friends were folks who share my passion for Australian
Cattle Dogs and believe in the special healing power of these wonderful dogs we share out lives with.

In Texas and Austin friends dropped by with food and sent coupons for meals. It was an amazing help during our transition from normal to the new post cancer normal.

I don't have the vocabulary to adequately describe how life affirming and uplifting all the support, prayers and good wishes have been and still are today. I keep going to words like "really" and "very."

Although I have often been ill and fatigued, I still have friends who invite me over and over and include me in social activities.

I am currently typing this blog on a laptop given to me by a friend with lots of insight into cancer and chemo.

Because I have this laptop and a wireless network she and my brother set up, I have been able to keep up with friends through the Internet. Sometimes I have only been able to lie in bed balancing the laptop on my stomach.

It has been a key way of feeling connected while I am mostly staying home or in hospital.

I have a lot of gratitude for the friends that share on the Internet, through phone calls and visits.

I am truly blessed with good fortune. This post does not cover all the kindness and generosity shown me by family and friends. More about that later.

I am lucky to find that there are so many good people that wish me well.

Melting Watch Day

Today it was 104 degrees.

It was a melting watch day, Salvidor Dali-ish. I worked on getting ready to add photos to this blog. Maybe I will have it together by the weekend?

Dash and Molly came over with Charley this morning. Charley said he was thrilled to see young women giving him big toothy smiles as he drove. He doesn't usually get that kind of attention since becoming a senior citizen. Then he realized that Dash was sitting up in the seat behind him with his big toothy and tongue grin. He is such a handsome and happy boy. See, you have to have a photo of Dash's smile.

Molly, ever the lady, was curled on the seat with her chin on the armrest. Her ear is much better. She is a trim and fit 12 year old. She didn't want to leave me to get her collar and leash on for the trip home.

This Friday I see my local oncologist. She should have the results of my blood tests taken Monday. The tests are general blood panel to see if I am ready for chemo again and a tumor marker test. She may have results back from the Mayo Clinic for a DNA test to see if I have a mutation of p53 which would give me an increased risk of sarcoma, breast, leukemia and central nervous system cancers. It could explain my having two primary cancers at the same time.

The oncology interns who took my cancer pedigree were horrified by the number of cancers. Both grandfathers died of cancer. One was a radiologist (osteosarcoma) in the 1920's and 1930's and the other an industrial engineer (don't know which cancer). I had always thought the cancers were byproducts of the times and their professions. My paternal grandmother had colon cancer in her 80's. One of her daughters had colon cancer in her late 70's. My mother's sister died of the same disease when she was in her 60's. One cousin on my father's side died of ovarian cancer a few years ago. She was less than a year older than I. One cousin's daughter had childhood leukemia or lymphoma. She survived and thrives today.

I just thought old ladies died of colon cancer after a lifetime of black tea and cake.

I guess spending a lot of my growing up years on the Texas petrochemical coast, I assumed I would get cancer. I am surprised it was not earlier. I remember reading about Los Angles smog in My Weekly Reader. We were amazed that they had so many cars. EPA's number one site on the first Superfund National Priority List ( on the first list) was located within a mile of my house. The old tin smelter in Texas City had a freshwater borrow pit that kids used to swim in - over the dumped barrels of waste. ( Was largest tin smelter in the world during WWII. The 140 acre closed facility had acid pools, waste water pools, process waste piles, dilapidated buildings and no security). When I lived there it wasn't operating. I don't think it was "cleaned-up" until the 1990's. I didn't swim there. I did end up in a borrow pit next to Amoco when I wrecked my Mom's new red VW. I was covered in crude oil and who knows what else? Later, 1967, when I lived in Chicago the smoke stacks of steel mills in Gary Indiana filled the horizon with pink and yellowish plumes. In the mornings I had to wash the black soot from my nose.

I think it turns out that having a grandfather with sarcoma was more risky for me.

Molly's Ear

Before my life was interrupted I was very involved in dog sports like herding, agility, showing and obedience.
My husband has been our three dog's caretaker and pal.
[Background note: Since my immune system crashes with chemo and I have been too weak to run a household I am living with my 90 year old mother. She has maids and aids who clean everything. ]
I get to see the dogs a couple of hours each week when my husband drives them across town to visit. Its great to see them.
Today Molly went to the vet. He treated her for a yeast infection in her ear. As usual, my husband dropped her off and picked her up. Thank goodness we have a really good vet.
I miss goofing around with them and team activities with them.
I miss taking care of them.
I miss normal me.

I found Team Sarcoma today. Events will be taking place in Waco, Cedar Park and San Antonio. I will probably be in chemo therapy during this time but perhaps next year I can participate.

International Sarcoma Awareness Week will take place from July 18-26, 2009.

2009 Team Sarcoma / Texas - Houston
“Saddle Up for Sarcoma Awareness”Saturday, July 18, 2009Spring, Texas
The Sarcoma Research Center at M. D. Anderson, along with the Amschwand Sarcoma Cancer Foundation will host their 3rd Annual Team Sarcoma Initiative on July 18, 2009.
The event will be held in Pundt Park on 4129 Spring Creek Drive in Spring, Texas. The park features walking trails, horse trails, birds, two lakes, and beautiful white sand beaches on the creek. If you are a rider, bring your horse!! Otherwise come and walk the beautiful trails with us. There will also be a miniature horse cart for the children to enjoy. The event will include a barbecue lunch at the park. There is ample parking for cars and horse trailers.
We would be delighted and grateful if you could join us in bringing worldwide awareness to this orphan disease. For more information, contact Team Sarcoma coordinator Sonia Hennessy at 713-563-7669.
Article taken from The Team Sarcoma Initiative - http://www.team-sarcoma.netURL to article: http://www.team-sarcoma.net/2009-events/2576

We are more than just our genes

Stephen Hawkins:
In the last ten thousand years the human species has been in what Hawking calls, "an external transmission phase," where the internal record of information, handed down to succeeding generations in DNA, has not changed significantly. "But the external record, in books, and other long lasting forms of storage," Hawking says, "has grown enormously. Some people would use the term, evolution, only for the internally transmitted genetic material, and would object to it being applied to information handed down externally. But I think that is too narrow a view. We are more than just our genes."
<http://www.dailygalaxy.com/my_weblog/2009/07/stephen-hawking-the-planet-has-entered-a-new-phase-of-evolution.html>

I hope so, too, Stephen. <- I said that.

Happiness in a Storm

A door closes and a window opens:

Recurring cancer and the extensive treatment it required forced Dr. Wendy Schlessel Harpham of Dallas to give up her beloved medical practice. So she turned her sights to writing, producing book after book that can help people with cancer achieve the best that medicine and life can offer them.Dr. Harpham is a 16-year survivor of recurrent chronic lymphoma.

In her latest book, “Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor,” she states: “Without a doubt, illness is bad, yet survivorship — from the time of diagnosis and for the balance of life — can include times of great joy among the hardships. You can find happiness. Chances are the opportunities for happiness are right in front of you.”She suggests creating a “personal happiness list” to help you remember favorite pastimes and reintroduce former delights into your life. Or perhaps you might want to explore activities that in your precancer life, you thought you had no time for, like studying a foreign language, traveling for pleasure or spending more time with friends.“You might need to explore different ways of seeing yourself and the world around you,” Dr. Harpham writes. “In doing so, you discover new types of happiness waiting to be tapped, such as the happiness of sharing invigorating ideas and nascent hopes with new friends, or the happiness of knowing love in a whole new way.

I am not as talented as she. I am reading a lot of popular fiction. It is something I have never done before unless assigned by a teacher. (I don't count Shakespear plays as fiction)

Bead and Bitch

Today my friend is picking me up to go buy some beads. We are working on beading projects with friends this evening.
We call it Bead N' Bitch.
That's right. You can't be positive all the time.

Next week I get lab tests and plan out the next chemotherapy and radiation with my oncologist.

More Metal

After tests it was clear that the chemo had reduced and confined my bone cancer. It was also clear that my femur was coming apart. The surgery team agreed to replace my femur with a metal "bone." During the 10-hr surgery they replaced the femur, my aging knee and made my hip socket metal friendly.

I had to learn to walk, dress and bath again. Fortunately using a walker after the first surgery made my upper body and arms strong although lacking stamina.

My husband stayed with me at the hospital almost the whole time and a few friends were able to visit :>

I was in for a month.

Chemo starts

The biopsy showed I had a high grade osteosarcoma tumor. A second opinion confirmed that it was not associated with the breast carcinoma.
My oncologist said she was going to hit me hard with chemo. She did. Chemo was a combination of drugs given 4 days (24 hr) in hospital.
My hair fell out
My nails turned dark
I had trouble with vision and reading
My white cells crashed
My platelets and red cells were low
I vomited and became very weak

Sometimes my bone marrow did not bounce back and I ran a high fever which sent me back to the ER and isolation in hospital until I could fight infection.

In Feb I consulted with the sarcoma group at University of Texas MD Anderson Cancer Center in Houston. It had taken over 4 months to get the financial status application and test results confirmed to get an appoinment with the Adult Sarcoma Group.

Metal Me and Life Interrupted

I had been in pain all year. The pain sharply accelerated during August.
Two different sports orthopedians had diagnosed me with a likely torn meniscus. I had assumed my arthritis was getting worse. I had been trying to stabilize my knee with grocery store knee braces.
While rising from a sitting position I felt a pop in my hip. Combined with the pain, foggy thinking and fatigue, I was frightened. We hurried to the ER.
The triage nurse said my blood pressure was off the charts ( sign of pain ) and hurried me to the front of the line. The ER doctor ordered a CT scan. He explained he could see fractures more easily than in the set of x-rays I brought with me.
What he saw was a fracture through abnormal material near the ball of my femur and the lump I had recently found in my right breast.

The next morning I was in surgery. They removed as much of the tumor as possible and installed a metal brace along my femur to preserve my ability to walk.

After tests, my right breast and a couple of lymphnoids were removed and a portacath installed in my chest for future chemotherapy.

I was in hospital recovering and getting occupational/physical therapy for 3 weeks.