Sunday Times

Enjoying today because I am finally starting to feel better. My sister and brother-in-law Phil came out to Redondo for the weekend. I walked on Friday. Saturday, Corey and I walked down to an old car show and I made the four of us fish, curried rice and coleslaw for dinner. We all watched The Big Bang Theory afterward. They left today. We plan to walk to the library later today.

I head back to Phoenix on Tuesday morning for a full schedule of doctor appointments on Wednesday and Thursday. Ali will be home on Tuesday as well and I can't wait to see her.

A Creed

There is a Destiny that makes us brothers;
None goes his way alone:
All that we send into the lives of others
Comes back into our own.

I care not what his temples or his creeds,
One thing holds firm and fast-
That into his fateful heap of days and deeds
The soul of man is cast.

Edwin Markham

Trivia: I love this poem of Edwin Markham's but he is really famous for another very short poem that my Dad used to recite all the time:

Outwitted

He drew a circle that shut me out—
Heretic, rebel, a thing to flout.
But love and I had the wit to win:
We drew a circle that took him in!

To read more of his poems see http://www.sjsu.edu/reading/markham.htm

Positive Energy Needed

Please keep these people in your heart today, Linda K's sister - she had surgery on Tuesday and needs to heal well to continue the journey. Elle starts chemo tomorrow and I am sure she is scared. Kathy W. moving through the process of early breast cancer. Tracy B. lost her gallbladder and is worried she becoming hooked on the 3 vicodin she has taken for pain. My brother-in-law Phil.

I am back on the Toradol for my Lupus and starting to feel better already. I am trying to walk everyday.

I still have a tiny opening present where the SAVI device came out. No drainage.

Genetics came back negative for the BRCA1 and BRCA2 gene mutations. BRCA1 and BRCA2 stand for Breast Cancer Susceptibility gene 1 and 2. These are human genes that help supress tumors when they are normal. If the genes have changed or mutated they can increase the chances that breast or ovarian cancer will develop. Mutations are also linked with other types of cancers as well. In my case, this means my ovaries stay put.

I am not in menopause- I could have told them that because there are days I still feel those hormones pumping! This means I am not eligible for the alternative to Tamoxifin or any research studies which would get me other alternatives. I will write more about these drugs in a future post.

Still waiting for my vitamin D level to see how the mega doses that I have been taking helped and becoming a freak about taking anti-oxidants.

Second Things First. Update 07-21-2009

The first thing you should do when diagnosed with breast cancer is get a second opinion. Dr. John Canady, MD, a professor at the University of Iowa is a firm believer in second opinions. "It's amazing to me," he says, "how people will go to multiple places looking for a car but go to one doctor's office when making a decision that they will have to live with for the rest of their life."

I interviewed two doctors for each phase of my treatment and am so happy that I did. There are many ways to approach medicine and I found that while many practitioners will treat cancer, not all are on the cutting edge. Not one physician was upset when I said I would be seeking a second opinion or that I had come for a second opinion.

Ask people who have already had breast cancer what they would do and who they had for doctors. Elle H., a new friend with breast cancer, said that making that call to another person with breast cancer was the hardest call she ever made during her treatment, "...but it turned out to be the best call as well. After getting off the phone I had more confidence in my doctors and decisions." I hope this blog will serve to support others with breast cancer as well.

In Arizona there is a wonderful service called the Arizona Institute for Breast Health (AIBH), which is a non-profit organization that provides education and support to newly diagnosed patients about their treatment options, completely free of charge. These second opinions are offered through a multi-disciplinary panel of Breast Cancer Specialists and each patient that is seen through the program is guided and supported by a patient advocate, a breast cancer survivor herself. Contact AIBH through their website http://www.aibh.org/or by calling 480-860-4200.

You do not have to be a resident of Arizona to take advantage of this service!

Walk to the Edge

“Live with intention. Walk to the edge. Listen hard. Practice wellness.
Play with abandon. Laugh. Choose with no regret. Continue to learn.
Appreciate your friends. Do what you love. Live as if this is all there is.”
—Mary Anne Roadacher-Hershey – author, speaker

Update: I am in Redondo and out of the 113 degree heat so that is a blessing. I seem to be having auto-immune symptoms, my mouth is filled with sores, I feel like I have pleurisy on the right side of my rib cage and I am tired. All that said I took a little walk along the beach today which I have not been able to do. I am embarrassed to say this in case anyone reads it in Phoenix but it was hot out there!

What a blessing it is to have something happen that reminds you of all that is important. My husband, my family, my friends, my work; all seem a little bit sweeter. The earth seems more important, the ocean a little bluer, time a more important commodity.

Radiation Helpful Hints - Updated 07-20-2009

Please feel free to add these hints if you have ideas from having radiation or from other types experiences. I would love to have a really comprehensive list for people to peruse.

Bring an IPod or an MP3 Player: Listening to your own music is so soothing and keeps your mind off the machine noises. For days when you do not feel as well try uplifting, classical or light tunes. Some days when you feel the fire - rock and roll is just the thing.

Reading material or puzzles are indispensable. I like to read series starting at the beginning and work my way through so I always have something to pick up and go with.

Try to look happy when checking in and leaving. Most of those waiting in the lobby are at the beginning of the journey and we need to show them that we can do it and so can they.

Plan a treat. If you are having brachytherapy you may want to schedule to have your hair professionally washed and styled - no showers for the duration of partial breast radiation. Try a pedicure, a facial, or a new dessert.

Thanks to other readers for these tips:

Finding a good lotion to use on the breast afterwards is important to keep the skin from becoming leathery. Lots of readers mention this and these lotions were suggested by them. (You might try to get a sample or small size first. )

*Dove Cream Oil Intensive Body Lotion
*Lubriderm Sensitive Skin Therapy Lotion
*Lubriderm Shea & Cocoa Butter Lotion
*Bliss Naked Body Butter
*Avon Naturals - comes in several flavors but the reader preferred Cucumber Melon or Vanilla.
*Several readers raved about Aquaphor and others hated it.

Other tips included:

Tell your friends, "It’s okay to ask me how I’m doing. Just don’t ask every day. "

Ask if you can participate in any research studies.

How I met Iridium -192: A Savi Story

Radiation is used to kill any stray cancer cells left over after surgery. The traditional whole breast radiation delivers radiation to the whole breast using a machine called a Linear Accelerator. It is outside of the breast .
Breast Brachytherapy is the application of radiation near where the cancer cells were taken out. It is delivered through a device that is placed inside the breast and the radiation is deliver through small small catheters that look like straws. The device was placed in my breast by my surgeon about two weeks after surgery. Part of the device is inside and part sticks out.


My device is called a SAVI. You can see it where it comes out the skin near the bottom of my breast.













This is the CAT scan image of the device inside of me. You can see the device on the left and shadows of my ribs in the middle portion of the image.

The machine that delivers the radiation for brachytherapy is called a High Dose Rate Remote Afterloader or HDR. It has tubes called catheters that hook up to the tubes on the SAVI device and the HDR sends little seeds of Iridium-192 through the device stopping the seeds every 5 mm for a very short time.

HDR Machine as seen by me while hooked up.







Me as seen by the HDR machine while hooked up.








The radiation treatment itself took about 15 minutes but I had a CAT scan to check the placement of the machine before each treatment and the doctor and the physicist checked the device and the HDR before each treatment. I had 5 days of twice daily treatments.

Jenn was one of my radiation therapists. She went to school in Wisconsin at the University of Wisconsin in Lacrosse, I believe and she and her husband are looking for a house.




This is the CAT Scan machine.






I have now completed my radiation and meet for a second time with the oncologist on the 29th.

Thanks Dr. Kuske for helping me with all the radiation lingo and description!

www.armyofwomen.org

I am finished with my radiation, have a terrible headache, and can't wait to get to Redondo, hopefully later in the week. Corey has been more than patient with me this week, Courtney & Ali have kept my spirits up and so have the army of women friends who I have known for years and new friends I have met in the past few months as I have been treated for cancer.

My heart is with my cousin Wendy as she undergoes continuing chemotherapy for breast cancer. Wendy and I are the cousins who are the same age and we were diagnosed with breast cancer within months of each other!

Please send out special energy to my new friend Pam P. Pam has two more radiation treatments to go and then a break before chemotherapy. She is so pretty and calm and I felt such great strength from her as we passed twice daily to receive our treatments!

The army of women site listed recruits healthy women with no history of breast cancer, breast cancer survivors and those at high risk for breast cancer to register through the site to become potential clinical trial participants. Check it out! You may be help even if you do not have breast cancer!

Update

Thanks for all the calls and good wishes. The device for radiation was placed yesterday late afternoon. I spent this morning getting CAT scans and with the radiation oncologist and his group. I will start radiation twice daily tomorrow and will try to report more about the experience later in the week. Right now I feel like a truck ran over me but a small truck.

Peace!