Testing #Scanxiety

Anyone touched by cancer knows about testing Scanxiety. You don’t want catastrophic thoughts running through your mind.

It’s been a slow process of testing, fuzzy thinking, difficult concentration, pain, and symptoms piling on over the past few months. I’m mostly disappointed that I’m less productive.

It started with pain in my right ribs. Then there was more pain on my right breast that recently extended to my back ribs too. I’ve had X-rays, MRI without contrast, and most recently a bone scan. Each time I hear results of no mets I’m extremely grateful.

I’ve had early stage breast cancer twice, chemotherapy, radiation, lots of breast surgeries including a mastectomy with reconstruction. Everyone knows how passionate I am to see that we do everything to extend lives with quality of life and find a cure for Stage IV.

Testing Scan 2Just when I thought all was clear I got a call from my oncologist that after further inspection there is a suspicious spot on my spine at T8. Tomorrow they do an MRI with contrast on my spine and see if a biopsy is warranted.

I could use good thoughts and prayers.

While I feel fear, I refuse to let it run my life, (easier said than done) especially when there’s so much I am grateful for including all the incredible support around me.

 

______________________________________________________

Click for  Update on Scans  It’s great news!great_news_clipart_-_Google_Search_-_2016-02-06_09.49.49

Things are Looking Up

I truly feel empowered by the amount of love and understanding that I am receiving from my family and good friends as a result of blogging my true thoughts and emotions. I am so uplifted by all the love and support coming my way.

love26gratitudelogo2.jpg?format=500wAfter facing my fears and shedding many tears, there is plenty to be grateful for and inspired about. My fearless friend is strong as an ox. She makes me laugh and my time with her is wonderful. Although she had a very rough week, the treatment is working. She is optimistic and so am I. The-Correlation-Between-Fitness-and-Happiness

While still depressed, I am confident I am on the road to recovering from it. With the incredible help of my family and friends, plus tons of resources, all will be well.

IMG_5839Some days everything looks bleak. But life is full of surprises. I am not alone. It’s time to throw away the pity party and look towards the future. I refuse to let everything drag me down when I have so much love and support that I can count on.

And don’t worry. There is still plenty to write and complain about. But today I am going to live in the moment. I will continue to remind myself to approach each day with ease and joy. Sometimes it’s easier said then done but I will keep on trying.

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.

My Fearless Friend Li Bailey

I first met Li in February 2005 at a conference table with a great breast cancer support group. The group was for early stage breast cancer and everyone in the group that day were all in the middle of chemotherapy while I was about to start my first round of adriamiacin and cytoxin. I had to do chemo because they found the cancer in my first lymph node. I had no problem undergoing a surgical lumpectomy, sentinel node biopsy, or axillary dissection, but when I heard I needed to do chemotherapy and I would lose my hair, I knew I needed some help.

It was ironic that in November my hair stylist of several years chopped my hair very short when I asked her for a little trim. I was furious that my long hair was gone, so I went and got hair extensions until my hair grew longer again. I told the group I had extensions and Li picked up immediately that I was not going to do well losing my hair.

IMG_3127_2The next time I saw Li was in my oncologist’s office when I was about to leave.  As I looked up from my papers she came out into the waiting room. I saw her and immediately gave her a huge hug and realized she went to the same office with a different oncologist.

Since she was alone I asked her how she was getting home and she said she was going to call a cab. Li lived in Santa Monica near the oncology office and managed to get around by bus, friend’s rides or taxis. I offered her a ride in my car parked far away. As we walked she was getting out of breath, because her red cells were very low from the chemo, but I kept telling her we were close to the car.

We started calling each other and found that we had a lot in common. I had a graphics arts background with a degree in architecture and she had worked as a designer at the Smithsonian. She left her job taking a very early pension and after seeing the Pentagon in flames from her apartment window on 911. She moved back to California where she and her ex-husband had lived before she went to DC.

The day my hair fell out we spent the day on the phone talking for hours. She was so supportive since she knew this was something I was not comfortable with at all. From that day forward we spoke with each other practically every day, and it was so comforting for both of us going through chemo together. Her regimen was adriamyacin every 3 weeks for 6 rounds totaling 18 weeks of treatment. Mine was “dose-dense” adriamyacin and cytoxin every two weeks for four weeks, followed with taxol every two weeks for four weeks totaling 16 weeks of chemo.

We talked about breast cancer and chemobrain plus our lives, side effects, research and managing to get through treatment, and we thought we knew a lot about breast cancer. We went out for meals together and one of our favorite places to eat was a Chinese restaurant run by a family we called “Lucy’s”, since Lucy always served us while her mother was in the kitchen. We both had terrible stomach issues during chemo. I had trouble keeping any food down and her food just seemed to run out of her little body.

We became extremely close because we were experiencing the same “trauma” at the same time. We would lose ourselves in conversations and never missed a Saturday to get together. We could both talk without our wigs on and I laughed when she made fun of me for holding on to whatever strands of hair would stay on my head. Truthfully, I did look a little  bizarre with 20 stands of knotted up blonde hair and probably should have just had my head shaved!

She also helped me through the crying jags since my hormones were going crazy. When one of my front crowns kept falling out, she made me laugh at myself being bald and toothless as I would call the dentist to glue the tooth in one more time till I finished treatment and could take care of the tooth properly.

We both needed surgeries and we never missed being the person to go with each other for surgeries. Li also got a dog named Shelby who is part shih-tzu and part maltese. Li had moved from a studio to a one bedroom so she could have more room and be able to take care of Shelby. She bought puppy gates and it was so much fun to visit her with Shelby, who I fell in love with from the day I saw her fitting in the palms of Li’s hands.

When Li had some cysts that she was not sure were cancerous she had an oophorectomy. Fortunately they were not cancer. She woke up crying which was so unusual for her. I think her mind knew that her female plumbing was missing and her tears were her hormones and her mind realizing that her breast and her ovaries etc. were missing.

In February 2007, I had a recurrence in the same breast, which my breast surgeon said had to have a mastectomy. I had finished treatment a year and a quarter earlier and had several biopsies that were false alarms in both breasts. My breast surgeon handed me business cards of plastic surgeons that he worked with.

The first surgeon saw me right away and it turned out he did Li’s reconstruction when she had her mastectomy and her results were awful. He wanted to do a Diep Flap (taking the tissue from my tummy and putting it in my breast). He also wanted $30,000.00 dollars over my co pays with my insurance to do the procedure.  I ended up picking the plastic surgeon that accepted my insurance, but that decision left me with many extra surgeries because I had a radiated breast that caused multiple surgical failures.

Like every other surgery, when I had the bilateral mastectomy surgery,  Li was with me. I encouraged her to go back to the first surgeon and get him to fix her botched job. She had her surgery after mine and when I went to talk to her doctor the first thing he said to me was “It’s very hard for a woman to lose her breasts”. I could not believe he didn’t recognize that I was in his office only two months before Li’s surgery. I said “Tell me about it . I have had a bilateral mastectomy with reconstruction”.  The next thing he said was that Li’s insurance probably wouldn’t pay for her stay that night. I explained she had a pre-approval letter and let him know that I saw him for a consult making him have to say he remembered me even though he didn’t. Awkward!

I knew how organized Li was with her paperwork, so when I went to her hospital room after speaking with her surgeon. Li pointed me to the paper with the pre-approval from her insurance. I called her insurance right from the hospital to make sure they were covering her hospital stay for the night. The plastic surgeon was wrong.

The next morning, Li had trouble breathing and she felt very out of sorts. We called the nurse who got hold of her Doctor. He said “When I did the surgery I may have kind of sort of nicked her lung”. I asked him, “In what percentage of patients does this occur”? He replied, “only her”.  I asked what they were going to do about it and he told me they would do a surgical procedure right in her hospital room by surgically placing a large tube in her side to build her collapsing lung back up. I couldn’t resist asking, “Are you sure her insurance will cover her to stay at the hospital longer after the procedure”? Of course the answer was yes, and I am so glad Li knew to get approval to stay overnight for her procedure, because if she had gone home and her lung collapsed I don’t want to think about how that would have gone down.

I stayed with my friend Li to hold her hand as long as I could while they prepped her for the surgery. They told me I had to leave the room while they did the surgery or I might faint. They don’t know me. I am very good in hospitals and I can handle blood and surgery.

When I needed my tissue expanders out and got my first implants, Li was with me. That surgery eventually failed.  After my recurrence I was very beaten down and I really wanted to spend some time with my family living in Tennessee. I ended up selling my LA condo and moved part-time to Nashville so I could be closer to them. But I kept my doctors and especially my oncologist in LA. I was lucky that another great friend in the group of 8 women breast cancer survivors (that now met at each other’s houses), rented a room to me in LA, so I could travel back and forth.

In February 2009, I flew to LA  for the monthly group meeting and hung out with Li for most of the time like we always did when I came to LA. We would go together to doctor appointments, restaurants, meetings and I also would bring my computer over and get work done while she did her work since she had wifi. She looked the healthiest I had ever seen her. She had gained some weight and her hair looked so beautiful and healthy. I told her how awesome she looked and we were so glad we made it through all that treatment. Li mentioned the last time she saw her oncologist she was told that it was a great sign that she was 4 1/2 years out with her pathology.

She was supposed to have her appointment with her oncologist when I was there and we were going to go together, but her oncologist had to change it, so Li changed the appointment for her birthday on February 19th. Li told me she had a small rash on her breast that she thought her bra must have caused. We both ate very well as we were enjoying the fact that our stomachs were returning to a new normal.

I returned to Tennessee and I called her later in the day on February 19th to wish her a Happy Birthday, assuming her oncology appointment went well since she looked so healthy. Li was a mess. She said that her doctor sent her to her breast surgeon for an immediate biopsy and the look on her doctor’s face made her feel like this was extremely serious. It was. The rash was skin legions from Metastatic Breast Cancer (MBC) and she also had it in her bones. She was Stage IV and had to start chemo again right away.

I ended up moving back to LA permanently in July 2011. I was very glad that I could be with Li so much during the last seven months of her life.

Li’s strength, courage and determination throughout her treatment were amazing. I felt awful especially thinking back to the day when we were going through primary treatment and she was going to have what I thought was  her last chemo the next day. We were together in front of our favorite restaurant “Lucy’s” in Santa Monica. Li’s red cells were awful so she had to sit down on a bench. I said to her “Li this is the last chemo you will ever have to do again in your life”. Sadly I was wrong.

Li worked very hard putting her affairs in order before the cancer traveled too far for her to have treatment anymore. As soon as she was sick with MBC she asked me if I would take care of her dog Shelby. I said, “of course” yet I hoped she was around for a very long time to enjoy the joy that Shelby brings. I remember when she was getting close to the end and I asked her if she was afraid. She said, “I’m not afraid of death but it’s the indignity of all of it that bothers me.” I knew that losing her mobility and not being able to do things for herself plus ending up thin, bald, and with a huge stomach from her liver metastasis building up fluid was no picnic. Luckily we found the most wonderful caretaker, Cora, who Li and I adored. She was such a comfort to Li constantly cleaning and making Li’s home beautiful plus running any errands Li needed done.

A few days before she died the caretaker Cora, Li and I had dinner. Li sat up in her hospital bed that we had in her room at home while Cora and I sat in chairs surrounding her. I said, “Li remember when we first went through chemo and we thought we knew so much about breast cancer? Boy were we wrong”. Li and I just laughed. We were trying to be normal having dinner, but truthfully there was nothing normal about anything that was going on. Li was getting more tired and going from moments of extreme clarity to moments of disorientation and confusion.

The last night of her life I came to join Li for dinner and she was particularly tired and didn’t feel like eating. I held her hand for some time while she went in and out of sleep. She said to me “I always love when you come by for dinner”. I told her that I loved her and was so grateful for our friendship, which I said at the end of so many of our conversations. She said she loved me too and went back to sleep.

She died that night and I received the call from another great friend who had also been by Li’s side through this daunting process. Li donated her body to science and did not want a funeral. When they came to get her body for UCLA, I was so impressed by how dignified they wrapped her up in a beautiful white sheet.

Since I promised her I would take care of her dog Shelby, I took Shelby and all of her things back to my home that day.  I miss my friend a lot. Thanks to her incredible gift of Shelby I feel Li’s presence every day.

Li’s death from MBC along with the friends I know who have cancer that has metastasized has made me determined to make an impact on seeing that we have an end to this disease.

I know that 1 in 8 women will get breast cancer in their lifetime and 109 women in the US die a day from breast cancer. (I haven’t forgotten that there are also men that get breast cancer too). This means one death every 14 minutes. With each person there is an important story.

I feel guilty sometimes that it wasn’t me instead of Li. It still could be me. That’s what is so cruel about the disease. We think we know so much more about the disease, but when it comes to the loss of lives we haven’t made much progress. True we can keep someone alive longer with chemotherapy drugs, but eventually cruel cancer figures out a way to outsmart the drugs so they no longer work.

My fearless friend Li, was not just another statistic. We had an incredible bond as a result of breast cancer and we cemented our friendship with being supportive of each other as breast cancer was always with us.

I know her spirit lives on through the memories of her.  I especially get comfort every day from Shelby. I am truly lucky that I got to know Li and I treasure the time that we got to spend together.