Curve Balls

 

SUNDAY, JUNE 16, 2013

Curve Balls

Man, life throws many curve balls, I was not expecting one that came flying at me last week.  I was Fired from my volunteer work.  Not the accomplishment I had expected, and it was devastating for me. I loved that job; I loved the people I worked with, and I especially loved all the patients who touched my life. I violated HIPAA law and took pictures of patients. First off, I just want to say they all had my permission to take their picture, and 2nd I would never post something about a patient without their consent. However, I recently had my blog redesigned, and all the journal entries I had written and drafted, were posted public without me knowing.

  They were written a year or year and a half ago, when I was asked not to mention the facility that I was volunteering for or the patients, I immediately drafted all of them for my children to have, and for myself to look back and remember. For those of you who do not know about drafting, it is a journal you write and never post for all to see but is kept secret and I eventually wanted my blog to be made into a book for my children, so I did as I was asked, and I took all the posts off my blog immediately.  To be honest, I have a ton of drafts, things I don't want the world to see but have saved for my family to read long after I'm dead and gone.

When I went to my "volunteer" job 2 weeks ago, I was called into a meeting where I was "let go" I was told if an employee had done this, they would be "let go," so they felt it was time for me to be "let go" I asked them if I could delete the entries. The answer was "you have 3 days to get them off your blog, or we will be forced to file a federal suit"  so sad, I took off my scrubs and handed in my badge out the door I went feeling like I had just been defeated by the world, I cried uncontrollably for hours, well actually the crying went on for days, I finally got it controlled to a slow tearful drip after a few days.  When I got home, I asked our attorney if this could happen to me; he said NO, that the facility I was volunteering for could not sue me for violating HIPAA laws the patient would have to be the one to sue me, --and since every one of those patients or their caregivers still email me regularly, (except for one), I contacted each person who I had ever posted about, got written permission from them or in a couple cases the patients had passed on, and I got permission from their caregivers, who by the way also asked me for a copy of what I had written, by this time I had already deleted them.  However, I told them once I had their written permission, I would send them a copy of what I had handwritten.  Each was so grateful, I had journaled, and each had already known about the experiences and the intimate talks I had with them, so it was not a surprise to any of them when I read the journaling to them.

 I'm not sure what this world is coming to, I do understand the HIPAA laws, and I do understand the right to have privacy, but I would never post something without first asking the patient. There was only one post that I had written that I felt was imposing without permission; names were never mentioned, and if this person had found it on the world wide web (1 in a billion) They could have guessed it was them I was talking about, but there were no pictures or proof.

I learned a lot from this experience, and although I think "they" were being a bit dramatic in their decision, I know the Lord has something else planned for me.  It's important for me to be in a place where I am not only needed but appreciated for the service I love to give.

My Visit with Dr. Northfelt

 

SUNDAY, MAY 26, 2013

My visit with Dr. Northfelt

This past week my husband turned 55 years old--we decided to go to Paris for the week. We always have an enjoyable time together, but I don't think we will go back in May again. It was rainy and cold. We went to my "happy place" to ride bikes, and it was pouring down. No bicycles and it is freezing. We walked around, drank some hot chocolate, and talked about having my ashes spread there in that beautiful place--they painted the house/chateau a red and white color. I liked it better when it was just white--Eric spoke to the guard at the gate, and he said for a fee, we can rent out an area or room for family--could it be that he is finally warming up to the idea of my cremation?

Porte Jaune my "happy place"

the walkways and bike trails in Porte Jaune

This is the cute little hot cocoa/sandwich shop we love

At the river, usually, there are giant white swans

the private chateaux

Paris is and always will be "our place" I love spending time with Eric in Paris, and it never gets old. We have our favorite places we like to go to, but mostly just spending the days alone together holding hands and walking through the beautiful parks and streets is the best.

Frenchie

Notre Dame picture for Dr. Northfelt

These are what I save up all my sugar for--days to look
forward to--pastries are my favorite sweets, and I will
wait a year. If I know, I can have them.

I'm not always forthcoming regarding my visits at Mayo Clinic, especially with my family. I just don't want them to worry--if there is a concern, I will tell them, but to go for regular appointments with my doctors and for tests and more tests, I usually just don't give any reports. I saw Dr. Northfelt just before we left for Paris (he is my medical oncologist). We visited for a while; lots of questions, few answers. No, I am not cancer free. He asked if I wanted to change the cancer medicine I take every day and see if I would get fewer side effects. My question was, "what does it do?" his answer was, "blocks estrogen," then I replied, "What does the medicine I'm taking now do" His answer was, "Blocks estrogen." we both looked at each other and laughed, he shrugged his shoulders. All he could say was, "1/2 of my patients do really well, the other half don't, but they all have side effects" I then smiled and said, "well, OK then, let's try it," until I went to get the prescription filled and found out it costs $299.00 pp, and that was with my insurance, I decided to stick with the original medicine and live with the side effects if I was 100% sure there would be a change for the good I would pay it. Still, I'm not willing to take the chance of even more side effects and a massive possibility of no changes. I emailed Dr. Northfelt from Paris and told him, and he replied back that my decision was reasonable and to please send him a picture.

I am coming up on my 4th anniversary of being diagnosed with breast cancer. I'm grateful to still be alive and know I still have a long road ahead of me but don't we all? Life is Good for me right now.

Mayo Clinic Cancer Symposium

 

THURSDAY, JANUARY 24, 2013

Mayo Clinic Cancer Symposium

2nd annual Mayo Clinic Symposium was held at the Marriott just a mile from the Phoenix Campus of Mayo Clinic. I attended again this year. Seeing my team of doctors was good, and ready-to-present information was good.

Dr. Northfelt, my med/oncologist, and myself

Some of the information I learned from the meetings was new to me, and some I already knew, but this is the reason I like to attend these symposiums so that I can learn all I can about my disease and what the new techniques or statistics are.

I learned that 200,000 new cases per year are reported of breast cancer, and the side effects of radiation are some that I am still dealing with. 

Lymphedema ✓

Lung inflammation

Fatigue ✓

Depression and anxiety ✓

Chest wall and or breast tenderness ✓

Breast swelling ✓

Skin burning

I only have five of those seven side effects, so I feel blessed to not have to deal with lung inflammation or burning skin anymore.

I learned that Radical mastectomies no longer are performed and have not been performed on breast cancer patients since the 1970s. They no longer perform these because the surgical procedures have been incredibly advanced since then. In a radical mastectomy, they used to have to take everything, including the bone surrounding the area, this left women with horrible battle scars. I had a Bi-lateral mastectomy. Both breasts were removed with all the surrounding tissue but not bone. This allows the surgeons to reconstruct more efficiently, with much better results.

When someone has a lumpectomy, they only have a 1.9% of recurrence. a single
mastectomy 1.1% recurrence, and only 0/3% of cancer patients who have a lump in one breast will get another in the other breast--in Dr. Kreymerman, "they are sisters, not twins."
BRCA 1 or 2 mutation only has a 30% 10-year recurrence in the other breast.
Only 25% of breast cancer diagnoses are women under 80.

Some great things to come are:
Cancer Vaccines
the studying of tumor clones
DCIS vaccines
Her2 antibodies

One bit of information I thought was interesting, 15% of patients who go through the cancer process will get Post Traumatic Stress Syndrome. As you have been through a war, the fear and anxiety of the return of cancer or having to continue to deal with the side effects of cancer treatments can literally put one's body into traumatic stress.

With recurrent patients, 45% of women have treatable anxiety and depression within the 1st 3 months of 2nd diagnosis. This is a mountain to climb but more terrain to walk through.

Did you know

55% stress over financial problems during treatment
46% cut back on food to be able to pay their bills
6% lose their homes and have to relocate
50% are not comfortable talking about any of these symptoms, even to their doctors
50% of patients do not share all of what they are feeling or their fears with caregivers or family
history of abuse, physical, mental, or sexual, will increase the levels of anxiety and will not be
shared with doctors
most women post-treatment will have low sexual desire and vaginal dryness and feel embarrassed about asking or talking about it with their doctor.

I was not surprised that most women do not want to share many intimate details with their doctors but was reassured knowing I am one of them and it is normal.

I am still waiting to hear back from Mayo about my ultrasound and low white cell count--no news to report.

Dr. David Servan Schreiber Dies

 

MONDAY, DECEMBER 19, 2011

Dr. David Servan Schreiber Dies

Today I was searching on the Internet for some cancer information, trying to find another book written by Dr. David Servan Schreiber. He wrote ANTI-CANCER, a book I read shortly after getting out of radiation therapy research found that he had passed away in July 2011. Just a few months ago, my heart hurt when I read this. His book has helped me to give up sugars, flours, and preservatives for the past year and a half. I learned from him to live with NO REGRETS; this has been Eric and my theme for the past couple of years. He lived much longer than he should have because he changed his way of eating, exercising, and environmental thinking.
 This is the article I read about him:
Obituary: Dr. David Servan-Schreiber Empowered Cancer Patients

Dr. David Servan-Schreiber, awarded an honorary doctorate in humane letters at Carnegie Mellon’s commencement this past May, died of brain cancer on Sunday, July 24. He was 50.

Servan-Schreiber’s career spanned two continents as a professor and physician in Pittsburgh and Paris. After completing two medical degrees, Servan-Schreiber earned a Ph.D. in cognitive neuroscience at CMU under the guidance of Jay McClelland and Nobel Laureate Herbert Simon.

Servan-Schreiber’s distinguished career touched many Pittsburgh institutions, including senior leadership posts at the University of Pittsburgh Medical Center, where he co-founded the Center for Integrative Medicine, and academic appointments at the University of Pittsburgh and CMU. He published more than 90 scientific monographs and lectured at leading international educational centers.


One of the seven co-founders of the Nobel Peace Prize-winning Doctors Without Borders U.S., Servan-Schreiber, served in Iraq, Guatemala, India, Tajikistan, and Kosovo, addressing epidemics among refugees. He served as a member of the organization’s board for nine years.


In 1992, at age 31, Servan-Schreiber discovered a tumor in his own brain while conducting brain-imaging research. He was diagnosed with brain cancer and given six months to live. Confronting his illness and marshaling his own will to live, he embarked upon a 16-year journey fighting and seeking to understand his condition, culminating in his 2008 international bestseller,” “Anticancer: A New Way of Life”” The book and his international lectures have empowered cancer patients and survivors with knowledge and tools to combat the disease.


Servan-Schreiber is the eldest son of the world-renowned Jean-Jacques Servan-Schreiber, the late politician, publisher, and co-founder of the French newspaper’Express. Jean-Jacques Servan-Schreiber was a distinguished lecturer at CMU during the years that his four sons, David, Franklin E’866, HSS’899), Emile S’855, HSS’899’ 911). Edouard S’888) were students at the university  Je n-Jacques Servan-Schreiber who worked closely with Raj Reddy, CMU’ss Mozah Bint Nasser University Professor, as founder and president of the World Center for Informatics and Human Resources.


The funeral will be held in Paris on Thursday, July 28.

After he was told in 2010 that another brain tumor had been found — he called it” “the Big On”” — Dr. Servan-Schreiber wrote the third book,” “We Can Tell Each Other Goodbye Several Times”” with Ursula Gauthier, a journalist  Ma y viewed it as a final testament.” “Death is part of the life process; everyone goes through it”” he said in one of his last interviews ““It is very reassuring in itself””

Neuropathy

 

MONDAY, OCTOBER 24, 2011

Neuropathy

Just when I thought I was done with neuropathy.... surprise, it's back. My legs feel like the nerves have been exposed to the air again, and the pain is sometimes excruciating. I am learning that a small percentage of people who get neuropathy from the effects of chemo must deal with it off and on for life--yes, I am one of those people--no big deal, I can handle it--
Today when I was at work, one of my friends I had not seen for a while came over to talk to me. She was wearing a pink beanie to cover her bald head--she went through a double mastectomy a year and a half before I did (stage 2). Now, it has metastasized to her lungs--she showed me the X-rays --I cannot stop thinking about her today. Cancer really is this ugly VILLAIN, it invades lives, and just when you think you've turned a corner looking to a bright future, BOOM, it's back to haunt and taunt you. Whether a recurrence or side effects, it never goes away.