Lucky Me

This morning I found myself in the waiting room of the radiation treatment center exchanging comments with a new friend about how lucky we were. Now this new friend has brain tumors that have reoccurred after 5 years of being cancer free and I am in chemo for a rare cancer and radiation for another. Just how lucky could we be?
We shared how we both had been healthy for most of our lives. She had not had cancer until after retiring from teaching. Although we may not benefit from the nanotechnology and gene manipulation of the future (perhaps shutting off the cancer genes) we had waited until a time when many survive cancers. Our husbands were both rolling their eyes like we were nuts, but at that moment in time we both were aglow with optimism.

This evening I had dinner with friends. I was a little sorry for myself while I told them the chemo was hard. I felt the one drug I am on was as hard as the previous four. Both friends had participated in research that made my current treatment possible. (To protect privacy, I don't want to use friend's names in my blog.) Their dogs were diagnosed with osteosarcoma and participated in treatment research of chemotherapy treatments. Like most canines the osteosarcoma was not diagnosed until it was advanced.

Osteosarcoma is the most common bone tumor in dogs. It typically afflicts middle-age large and giant breed dogs such as Irish Wolfhounds, Greyhounds, German Shepherds, Rottweilers, and Great Danes. Interestingly spayed/neutered dogs have twice the risk of intact ones to develop osteosarcoma.

I owe a debt of gratitude to those caring people and their brave dogs that participated in osteosarcoma research and made me the lucky person I am today.

Birthday Lift

Sunday was my 62nd Birthday and one year anniversary of being diagnosed with cancer.

Three good friends provided space and tres leches cake, ice cream, fruit salad, ice tea and munchies. It was pulled together quickly. I was sick during the time I should have been notifying friends, so everyone got short notice. Still lots of folks were able to come and I had a wonderful time.


When this journey started I had assumed that I would have 6 months of chemo and then rehab back into my real life. A year later I am still running towards the light.


While looking at the plans for the RA Bloch Cancer Survivor Plaza last May it began to occur to me that http://www.statesman.com/news/content/news/stories/local/05/28/0528plaza.html

http://austinparks.wordpress.com/2009/05/28/ra/



I may not just travel in a straight line from diagnosis to treatment to cure and survivorship.

I hope they do build the plaza.

Survivor

I am starting to feel that besides being a patient that I am a survivor.

The afternoon of August 21,2008 I asked Charley to take me to the emergency room. That is when I learned that a CT scan showed a fracture through "abnormal" bone tissue that appeared to be cancer.

This Sunday is my 62nd birthday. Good and dear friends are hostessing a part for me celebrating my birthday and first year as a survivor.

The fight is still on but so much better now.

Good check up

Last week was hard. My portacath surgery was delayed by 5 hours of hunger, thirst and boredom while my surgeon dealt with a case before mine that apparently was more complex than expected. The next morning I had chemo using the new unhealed port. The chemo drug Cisplatin made me feel very sick and weak. I was on nausea meds that helped but I had no appetite and was weak.
I kept up with radiation treatments and lay in bed the rest of the time.
I lost 7 lbs lying on my back in one week.
Thankfully my appetite is back and energy is returning.

Today I returned from a check up at MD Anderson Cancer Center in Houston. My sarcoma doctor, Robert Benjamin, and staff were pleased by how well I was. Dr Benjamin thinks the spots on my lungs we have been following are old and not a cancer spread.
I go back end of October for a PET, recheck with my orthopedic oncologist, Patrick Linn, and see Dr Benjamin again.

Practical Spirits

I have a favorite cheer leader at the Shivers Clinic. She is one of the Seton chaplains and a real pleasure to be around. She also helped me a lot when my mother was driving me crazy. She brought a nurse practitioner to a meeting with my mother. They explained the clinic, the support services and programs available to me. Although I will be 62 this month, the meeting made my mother feel as though she had conference with the adults. There are reason that I lived across the county from my mother for 30 years. Yes, I love her and she loves me.



My life as I lived it was really blown apart by these cancers. I live in my mother's apartment, my laundry, dishes and some food is prepared by her maid. A couple of times I was too weak to bath and her aid helped me.



It would be too much to have Charley running a household that an immune system compromised person like me could live in and expect him to drive me to doctor appointments, refill prescriptions, visit me at the hospital each day and care for himself and the dogs.

Many of the chaplins are great at facilitating communication between health staff, patients and families both in a earth bound practical way and spiritual way.

Today my favorite chaplin was helping the oncology nurses by calling patients ( including me) from the waiting area to the infusion center. She asked each of us how she could make us comfortable (pillows, blankets, juice... ). It was a graceful start to a long treatment day.

Busy

Monday morning I am having day surgery to install a new portacath on the right side and take out the old one. I guess that is a one year anniversary celebration of a kind.


Then, hopefully, I will be able to get radiation treatment in the afternoon. The radiation techs thought I might be too whipped to make it, but its important to get every treatment.


Tuesday morning I get radiation at 8am and then rush to the clinic for blood tests and infusion - until about 5pm. I'll get to use my new portacath right away.


Thursday, after radiation, I'll go to the breast clinic and get a bone density scan.


This fighting cancer thing is like a job.

I am currently reading the Atlantic magazine. I enjoyed a little poem called Heaven by William Hayden http://www.theatlantic.com/doc/200907/poem-heaven and Jamais Cascio's article that we survive as a people by getting smarter http://www.theatlantic.com/doc/200907/intelligence . Sort of echos back to Stephen Hawkins We are more than just our genes

Barb helped me finish two beaded necklaces I was working on Friday evening. I am happy with them both from an aesthetic point of view and construction.

The new chemo does not affect my eyesight like the old cocktail of chemo did (light flashes and blurry vision). I am taking a simple knitting project with me to work on during Tuesday's session. Janie started me on this project many months ago. Perhaps now that I am off morphine I can make more progress.

Tuff Enough?

Tuesday night I noticed that my throat was sore. The allergy forecast says mold has been high for weeks. I really don't want to have an infection going on while I am getting chemo or radiation.

This morning I realized that my throat was sore on my right side only. I mentioned it to the techs while getting ready for radiation. They said -oh yes and it feels like a lump? Yes. It is the radiation. I have a compound that includes Lidocaine to swish
three times a day and before bed. I am going to discuss this with the radiologist when I see them next. My doctor, Kristen Warhoe is on vacation this week. I will see one of her associates. I wonder what it is going to be like in 5 weeks?

I see my oncologists tomorrow after radiation and then the surgeon about the portacath. A busy day with doctors for us. I am blessed that Charley will be with me as a second set of ears and a better memory.

Next Tuesday ( every 21 days) I have the next chemo treatment. So far the side effects have not been that bad compared to the four days of 24 hr chemo I first received. Although I am not looking forward to it, I wonder if its effective since its not as hard on me - well, not yet.

When I was first diagnosed the pathologist diagnosed Osteosarcoma. Since it is so incredibly rare to have two separate primary cancers at the same time, my oncologist sent the sarcoma biopsy slides to the Mayo Clinic for a second option. They thought I had Leiomyosarcoma.

"Leiomyosarcoma is an aggressive soft tissue sarcoma derived from smooth muscle cells typically of uterine, gastrointestinal or soft tissue origin. Primary leiomyosarcoma of bone is a distinct entity which is quite rare..... "
(http://sarcomahelp.org/learning_center/leiomyosarcoma.html )

I underwent ultrasound scans looking for cancer in the soft tissue of my abdomen. None was found.

"Many cases that are thought to represent primary disease of bone, after further investigation, actually represent metastatic disease from another site or bony invasion from a neighboring soft tissue lesion. Most cases of leiomyosarcoma of bone reported so far have been in the metaphysis of long bones. Primary leiomyosarcoma of bone is extremely rare. There have been approximately 90 cases reported since initially described in 1965"( http://sarcomahelp.org/learning_center/leiomyosarcoma.html )

So my oncologist said that she was going to "hit me hard" with chemo for leiomyosarcoma. I was all for that. I had some suspicious pulmonary nodules. One on my left lung and one on the right. The one on the right looked more like an old infection that had left a bit of calcium behind. However, when sarcoma spreads, it tends to go to the lungs.

After 3 treatments my sarcoma tumor was much reduced and confined (except for where the splitting head of the femur let material contaminate my gluts). That allowed MD Anderson (Patrick Linn) to replace my femur and knee. The Sarcoma Center there diagnosed the tumor as Osteosarcoma - not leiomysarcoma. They hit me hard for 6 treatments total and then I crashed hard.

Following the Sarcoma doctor's (Robert Benjamin) recommendation, I am now getting Cisplatin instead of the 4 other chemo drugs. I go back to the Sarcoma doctor on the 18th. I will have a contract CT to monitor the nodules. Hopefully the Cisplatin will have kept everything shrinking.

Until then I will wonder if its tough enough.

A Few Stray Thoughts On Sunday

I did not know about the Wayback Machine until today. Am I the last to know?

http://www.archive.org/iathreads/post-view.php?id=243665

http://www.archive.org/index.php

I found this Q and A in an article about cancer treatment. I laughed and laughed at the understatement
"So, now the second question, "Why does the word chemotherapy almost always evoke a negative response?" Part of the answer is easy. Most of the cytotoxic chemotherapies are associated with (ob) noxious side effects: profound nausea and vomiting; loss of hair; significant weakness; marked increase in susceptibility to infection, etc. "

I think it is at least as funny as the ancient chicken joke "why does the chicken cross the road? To get to the other side."

And that why I am having chemo and radiation, too.

Next week I look forward to radiation every week day, a blood panel and meeting with the oncologist and surgeon.