While Flying – Frustration surrounds Me

For starters I was on a flight for a happy family event. The day started great. I got a lot of work done on our official Advocates for Breast Cancer website. I got to the airport at the right time even though LAX was so crowded because there’s a problem with the TSA and there’s long lines and less TSA agents to help move the lines faster.

airplaneI was a little mad at myself because I was lazy and went through the machine that I have been told by a radiation oncologist (whom I have great respect for) I should probably skip and not expose myself to the radiation. It just seemed faster. I started in an airport lounge with my computer figuring I’d work a little more on my Breast Cancer News at: http://www.scoop.it/t/breast-cancer-news and my Breast Cancer Advocacy stories at: http://www.scoop.it/t/breast-cancer-advocay. Sounds simple enough.

I searched the internet for abstracts and news stories about breast cancer and found what I hoped would make a difference with advocacy for breast cancer (and other cancers). I even discovered I spelled advocacy wrong today. Certainly I’m human and can make a spelling mistake. I sent out all of my good wishes to my fearless friends and organizations on Twitter trying to make pretty graphics while I sent energy to all of these incredible people who I have met either personally or through social media. So it seemed like it was time to get ready to enjoy a special family weekend.

#BCSMmagesI plugged my computer in and I saw a note from AnneMarie to look at Jody’s blog. I already suspected it’s bad news. Jody Schroger is one of our great moderators every Monday night at 6pm PST for #BCSM (breast cancer social media). It’s very bad. After years of NED (no evidence of disease), Jody has joined the 30% of breast cancer thrivers that has metastatic breast cancer (MBC).

And Jody. Why? She is a fantastic person who runs our #bcsm (breast cancer social media community) meetings with Alicia Stales and Dr. Deanna Attai. Why her? Welcome to the world of breast cancer. It’s all bad luck. Whoever gets Stage IV it has nothing to do with them not taking care of themselves or what stage they started with the disease.

I keep thinking everyone knows that I have talked about the statistic that about 30% of early stage breast cancer patients will go on to become metastatic. That’s Stage IV. Early stage breast cancer is what I had when I did chemo, radiation, and had a recurrence a year and half later. Stage IV means that the breast cancer has managed to travel from the breast to other body parts. With breast cancer it’s usually the bones, brains, liver, or lungs. Stage IV is a chronic disease. It is not curable, but can be contained. It depends on many factors how long it can be “contained”. Usually certain pathologies help because there are more targeted therapies that can work on keeping the cancer at bay. For those that don’t understand Stage IV breast cancer is breast cancer that has traveled to another body part. Let’s say it goes to the bones. It’s not bone cancer but still breast cancer that has metastasized to another body part.

MBC_Infographic_01_v14I am angry. This disease is like dominoes. This disease is so cruel. I watch as friends that I care about get the bad news. The reason I did the chemo-hoping no bad cells could hide from all the nasty toxic chemo that I did because my breast cancer made it in to my lymph nodes giving it a chance to enter my blood stream. We never know if some cells hid out and they are just waiting to say- GOT YA.

OK here’s the Stage IV lesson. They have drug regimens that patients go through that can keep the cancer at bay for some time and then the cancer finds a way to outsmart the therapy. So the MBC patient moves on to the next drug. The trick is to try to find regimens with quality of life for as long as you can until the cancer outsmarts the drug. Then it’s time for nerve-racking scans to see if the drug is working. If the medications are working it’s great. The patient stays the course. Eventually though comes the scan that shows the cancer is growing and trying to get to more body parts. Many MBC patients can live a very long time especially with certain pathologies that lend itself to drug therapies that can help contain the disease. Today’s MBC patient can even have a chance of seeing NED (no evidence of disease). But the cancer still comes back and outsmarts the treatment. I respect everyone who has metastatic disease because they have to live knowing they are on a slope that eventually their disease will no longer respond to the drugs we have available today.

At the same time I want to be clear that today’s MBC patient is quite alive and can have a long quality of life.

At the beginning when diagnosed there is so much shock to the body and mind. I have watched my best friend Li Bailey go through the process quicker than others because unfortunately (bad luck) she had a pathology that today we have less medications to fight it with.

This is just not fair.

think-before-you-pink-1024x574So why am I so frustrated? I am running a non-profit that aligns itself with breast cancer organizations that are working to help breast cancer patients. After learning that Komen’s  junk campaigns were based on lies like telling women if they got mammograms they had a 98% chance of beating breast cancer. This is so not true. Komen also raised the most money of any breast cancer organizations. There was a great article in the New York Times, written by journalist Peggey Orestein that I scooped today called “Our Feel-Good War on Breast Cancer,” I published the article in my last blog. Meanwhile Katherine O’Brien of the Secretary of the MBCN (Metastatic Breast Cancer Network) wrote a great summary, overview and response to the article called Our Feel-Good War on Breast Cancer: MBCN Responds. In her response to Komen’s use of funds towards metastatic research, she writes, According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.”

pinkcultureThere has been a a lot of backlash against Komen and as some of you understand the overselling of pink culture I don’t have to explain the issue. I hope that you had time to read these articles. They are so well written.

I think there is another problem with Komen. I think the biggest backlash against them is that they became arrogant. People called them out for having pink parades that did not include the metastatic community because they didn’t want sick people marching in their parades, since it didn’t give you that warm fuzzy feeling of survivors raising their pink pom poms because they survived the disease. Komen thumbed their nose at the metastatic community.

I have to fight for the mets community. I can’t help it. People are dying around me. I don’t like that. People are doing all sorts of difficult medical regimens to stay alive. I have to open my big mouth and do all I can.

I promise you I won’t stop until MBC is a disease that can be reversed or people can live with Quality of life. I will continue to see that we don’t continue having corporations making known toxins that cause breast cancer.

One positive thing that happened is when the #BCSM Community group met we all rallied around Jody. Ironically I was flying back from the weekend on Monday night and joined the meeting on a flight that had wifi. At first I was confused if the timing would work. Then I realized as long as I started the meeting at the right time, the hour would be the same no matter if I flew in to a different time zone. So many of us were frustrated, angry and wanted Jody to know we have her back. This community means so much to me and I am grateful that at least we can come together during the good and bad times.

I have a lot more to say about all of this. For now I am going to publish this first part and continue talking about some other things that have added to my frustration. Stay tuned.

Survival – A Widow’s Journal

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In Survival, A Widow’s Journal, Muriel Kagan Zager describes her experiences following the loss of her husband, Victor, after 56 years of marriage. Her reactions to her new status and the unexpected reactions of others to her situation provide an insight into what new realities she faced.  She discovered that some people she thought would be there for her were not; and some she little knew became life-lines for her.

Psychologists and therapists in the field have praised the work; many feeling that it should be used as a text for students learning about mourning. Widows and others going through the loss of a loved one have been helped through Muriel Kagan Zager’s journey.

I am so proud of my mother who wrote Survival, A Widow’s Journal. She is a journalist who specializes as a correspondent in the Middle East and an accomplished author. She has published four novels and she just published her fifth book call Survival – A Widow’s Journal. The book is based on a true story about my father who died of pancreatic cancer on June 6, 2008. I think that anyone who has lost a loved one to cancer or any other reason will really be helped by her book. Many of you will also will enjoy reading it because  she tells her story with wonderful grace. She’s a fantastic writer.

My mom let my sister and I read it before it was published and I also have read different parts of it again throughout this week. The book just came out a week ago. I want to tell you a little about my father, Victor, and his experience with cancer. He had kidney cancer aka renal cell cancer 15 years before he died of pancreatic cancer. The kidney cancer was caught early enough and they were able to take the damaged kidney from the cancer out surgically, and he required no further treatment besides the usual follow ups.

In early 2008 he was more tired than usual and his regular MD thought he had sinus infections and kept giving him antibiotics. He traveled with my mom for business and pleasure all over the world. Ten days before his diagnosis he felt horrible and his stomach got very bloated. He spent Memorial Day weekend at home in terrible pain and would not let my mom take him to the hospital. He didn’t want to bother his MD.

Finally when the holiday was over he had an MRI and it was discovered that he had metastatic cancer all over his body. If you read my mom’s book there is much more detail about what happened. We managed to get him on a medical plane to Nashville where most of the family including his grandchildren were able to see him at the hospital the last five days of his life. We later determined that he had pancreatic cancer.

I was happy that my dad lived out his last six months not knowing how sick he was and able to just enjoy his life. We had wonderful moments during his life as well as while he was in the hospital.

My father was an amazing man.  I am so grateful for the time I had with him and I am so lucky that I have grown up with such special parents and siblings, and my mom continues to bring me joy every day!

I urge all of you to check out my moms book. Below is a great review written by someone very special to my mom and me.

“What does it take to face the death of your husband of 50 years?  Can you be strong enough to survive and re-enter the world?  Muriel Kagan Zager has written the most honest and passionate love story in “SURVIVAL, A Widow’s Journal.”  As you hear the pulse of Muriel’s heart in every honest sentence, you will also feel the agony, the loneliness and the finality of the death of Victor, her spouse.  There is no smoothing over the misery, the heartbreak and the predestination of “who will live and who will die,” and when.  There are many books written about the wonder of life, but this is a passionate story about love, loneliness and survival.  “SURVIVAL” is worth reading for anyone who has faced a future of uncertainty.”

To Order the book and peak inside click here to go to amazon.com.

Always set up something to look forward to

I just returned from Europe having had an incredibly fun trip. Before I left, I had all sorts of deadlines and projects that needed doing before I felt ready and deserving of a vacation.  I hurried as much as I could to get all of my lists crossed off and I found a few things that were going to have to wait until I got back.

When it was time to pack, I accepted that I did all I could get done before I left and I prepared myself to go with a clear mind, so I could concentrate on having a great time.

Now that I am back I realize how great it was for me to get away from my usual routine. I feel refreshed and ready to return to take care of my lists, which sometimes can feel endless. Having something great to look forward to helps me to enjoy the tasks I have to do. This was particularly important for me when I went through primary treatment for breast cancer.

When I had to start chemo, before meeting my oncologist, I researched all the chemo drugs recommended for breast cancer and I picked all the ones that only caused hair thinning and asked my oncologist if I could get those medications. I said, “If I believe that these other medications are going to work for me would you give me this regimen instead”? My oncologist said that she would, yet she strongly recommended that I do “dose dense” for four cycles every two weeks infusing adriamiacin and cytoxin, followed by four rounds every two weeks of taxol. This regimen would take a total of four months and the other regimen was six months.

If I did the “dose dense” chemo that would make me lose my hair, I would start chemo in February and be finished in June. My Uncle was having his 75th birthday party in June, at a gorgeous villa in Italy that was rented for a whole week to come and celebrate his 75th birthday. Many family members and friends that I love were going to the party. When he found out that I had to do chemo he not only invited me to the party but he insisted on paying for me to fly first class (I am so lucky to have my Uncle Allan-everyone deserves an awesome uncle like mine).

If I did the regimen where I didn’t lose my hair I would miss the party. I wanted to go to the party so badly so I would have something to look forward to after all the chemo, so I decided to do the chemo that my oncologist chose based on my particular case.

Knowing I had the trip ahead made the chemo so much easier to bear. Chemo was extremely difficult though. I remember while in the middle of doing chemo how much I wanted to be in the moment while I still looked forward to the trip to Italy. I remember coming home one afternoon so tired from treatment that I had to take a nap before my drive to my oncologist for blood tests and more neupogen to boost my white cells.

I had the most vivid dream about my forthcoming trip. I picked up a family member that I hadn’t seen in years in New York and after riding in Central Park. I also stopped in Austria to pick up my good friend who was going to drive from Austria to the villa to meet me. Being that it was a dream I couldn’t believe how fast the trip was to get there. I woke up so peaceful thinking how great it is to be alive. There are good days and bad days with cancer and chemo, but this day was amazing. As I woke up, I laid in bed a while thinking of how excited I was about my trip.

I happily got out of bed, threw on my wig and didn’t even mind the traffic on the way home from my oncologist. I knew I was going to make it through the treatment and I would get to go on a wonderful vacation with family and friends.

It is so important to schedule time to get away. It doesn’t have to be expensive and even if you can only spare a short amount of time, getting away helps you see things differently and takes your mind to another place and time without your daily routine. You get to live in the moment before you go and certainly enjoy the time while you are away.

When I returned from Italy I started my radiation treatments. I felt so happy that I had a magical time away after a grueling chemotherapy regiment that caused me to lose fifteen pounds because I was so sick and nauseous from the treatment. Of course I lost my hair, eyebrows and eyelashes and was looking forward to them coming back. I also would go to radiation and lie on the table visualizing the beams of light killing cells including dangerous ones that tried to hide, and destroy them before they could get to other parts of my body.

I have returned from my trip with beaming enthusiasm for all the work ahead of me. There are stories to blog, new websites to launch, lectures to attend, webinars, news stories to share, SABCS, work with the National Breast Cancer Coalition Deadline 2020, delayed tax extension (Ok I am not looking forward to that), and work to see things improve for every cancer patient and loved ones. There is also time to appreciate and be so grateful for my incredible family, friends and fellow advocates, and acknowledge there is no place like home.