Cleaning up shop

This is a two post kind of day. First I wanted to memorialize the Spirit of Hope luncheon (see previous post) and now I'm going to update on the other stuff going on.

1) Finally got my appointment with MD Anderson after extensive follow up with Dr. McAndrew's office. Be your own advocate in your medical care. Medical professionals are busy but the squeaky wheel will get the oil...and now is the perfect time to be a well-oiled wheel.

2) Leo got his case taken on by the Westside Regional Center (WRC). The WRC is a social service that can provide in home physical, speech, or occupational therapy to qualifying kids. Leo is 23 months and still not walking on his own and that qualifies him. He is very close. He stands on his own. He'll take some steps but won't do much without being pushed. I know that early intervention is key in an developmental delay so he had already been doing physical therapy two times a week. Those session were only half hour sessions and the developmental pediatrician recommended that he be in at least three hours a week and one of the hours be at a gym for occupational therapy. He is diagnosed with benign (a word I like) congenital (born with it) hypotonia (low muscle tone) and he will outgrow this in time with assistance. His speech is affected by the low muscle tone as well so he will greatly benefit from the speech therapy in addition to the PT and OT. Sure, it makes one more thing to do with all the craziness already going on BUT I am thankful that this is something we can work on and that he can overcome. I am grateful that he can get the help he needs. He's not losing words or regressing physically both of which would be signs of something more severe. He is getting stronger and that is what we want.

My appointment in Houston at MD Anderson is on Thursday, November 29th. They tell you to expect to be there five to seven business days so I think that means I can be there two days then come home for a break to be with the kids and then go back the following week. I still don't know what the treatment plan would be and what it would entail. Staying in Houston for treatment 3 days a week or a week every two weeks or what or what or what. I'll find out when I find out. For now I am focused on accumulating medical records, films, and reports to make sure they have everything they need. They treat in a clinical setting so I will be talking to many MD's and nurses and want to make sure I have all my answers ready.

I am eager to get the therapy started. Abby asked me last night why I was going away in a few weeks and I told her again, "There is something growing in mommy's body that shouldn't be there, called cancer. Mommy is going to see special doctors so they can help mommy get all better". That's enough info for her for right now. Leo will be a bit more difficult since he can't communicate as well. My goal is to keep their routines as normal as possible and have lots of friends and loved ones around so they won't have time to miss me (even though I know they will). 

Am I worried? I would say I'm a little worried that this time my body isn't as strong as it was before since it is still recovering from surgeries, radiation and chemotherapy but I'm also not pregnant this time and won't need to give birth in between. I know that the "pre-meds" were so great last time that I didn't have terrible nausea and the steroids allowed me enough energy to come home after Chemo and play with Abby. I remember it was the fatigue that eventually caught up with me. I need to get on a better more consistent exercise plan. I've got my herbs and acupuncture with Dr. Mao which helps too.

I feel like an athlete preparing for an event. The stronger I can be the better I will be able to handle the fight.

Game on.

H O P E. It's not really a four letter word.

I have been remiss in writing about the Spirit of Hope luncheon. I can't say the word hope and not think of Sarah Palin saying "How's that hopey changey stuff workin' out for ya'"? Oyyyyy. I can say that despite having a recurrence I still feel that walking a life filled with HOPE is going well for me. Thank you. My favorite sign at the Avon Walk last year and this year reads "Once you choose HOPE anything is possible"...

The luncheon was amazing. It was truly a magical day for me. I got to get all dolled up, have someone do my make-up, curl my hair, wore a dress I haven't had an excuse to wear yet that was sitting in my closet feeling lonely, and got new jewelry and shoes to boot.  I felt like a pageant queen all over again. Some things never change! I am laughing because I think my hair is starting to look pretty cute at this length. Maybe I can get Piny to re-do my wig to something a little more like what I have now...

There were so many people I loved and cared about at the event. Even my grandma who doesn't venture out much came up and it made my day. There is no richer feeling than knowing that you are loved and cared for by people you love and care about and then some. I secretly wished Abby could have been there to see me get up and speak in front of an audience but she wouldn't have sat there long enough to see it I'm sure. She was a little sad to see my go and kept asking questions about why I was so dressed up and where I was going and why couldn't she go?  I really heart her.

THANK YOU to everyone who attended and contributed to the event. I know the day wasn't really about ME but I felt like it was. I enjoyed it immensely, thoroughly, and fully.  Thank you, thank you.

The boutique ahead of time was great but I didn't have time to get anything in between chatting with people and having my photo taken. Ha ha. Can you imagine? It was a blast. One random lady came up to me and said "Are you a model here? You must be a model!" and I could not wipe the huge smile off my face as I informed her that I was not a model but an award recipient. Did I already say "best day ever"???

My good friend Vizhier, whom I have always admired as a public speaker, introduced me onto the stage. I will point out that Vizhier likes to politely embellish things... I love you Vizhier!  I will post her speech here and my speech following. It was such a wonderful day. As soon as the even was over it was a race home to change and then pick up Abby from school. Mom duties!!

VIZHIER INTRO SPEECH: 

Jessica and I have been friends for over a decade. We met when Jessica was in her twenties and I was not. Life seemed a lot simpler back then.

I remember distinctly the time, early in our friendship, we were just getting to know each other. We were to meet at Clementine Cafe for lunch. I sat waiting at a table, the room was loud and crowded.

In comes Jessica wearing jodphurs, high boots, a tweed jacket and cap. It was as if Grace Kelly had just walked in from a horseback ride in the country. I think the entire room stopped to look. She took everyone’s breath away.

At that point I thought to myself, My friend looks is like goddess, a goddess having lunch among mere mortals. My ego is forever humbled.

Of course, there is more to Jessica than meets the eye. She is quite accomplished: a beauty pageant winner, Berkeley graduate, a career in private equity. She is a very thoughtful person, she is shockingly competitive, she is caring, and surprisingly funny.

I have witnessed many joyful milestones in Jessica’s life. – Her romantic marriage to David, the birth of their twins Abby and Ben, the birth of Leo. The kids birthdays..
……

I have witnessed the other events in Jessica’s life, some too painful to discuss.

But these are the moments that reveal to me the measure of her character…

I have seen Jessica, accept with such grace, the hardest tragedy a parent could bear: the loss of a child.

And yet, this was just the beginning.

In Sept. 2010, when Jessica was 6 months pregnant with Leo, she was diagnosed with breast cancer. We were all in shock. But for Jess, this was no time for pity.

She and David gathered all their close friends and family around at the Berman home to discuss the diagnosis and work out strategy for the rough months ahead. It was all hands on deck.

At this point, Jess had already drawn up plans to change her life, her eating habits, her family time. She had already determined her medical team, consulted with experts in traditional and alternative medicine; she had already sought advice from other cancer survivors. Just weeks after her diagnosis, Jess had her battle plan to fight cancer.

This fight in her, this inner strength, this beligerance against insurmountable odds surprised me. I realized she’s had this with her her entire life. She has always believed she could move mountains. And she has.

And a year after that evening. That intense year during in which her body was put through rounds of chemotherapy, the birth of her son Leo, a grueling and complicated mastectomy, followed by radiation therapy. After her spirit and resolve were tested over and over again…

After her treatment ended and she got the all clear, Jessica decided that it was not enough to have fought and won this round with cancer.

And so she enlisted me, her sister Lindsey, and friend Ashley in the Avon Walk for Breast Cancer because she wanted to give hope to other women that had been affected by this disease.
……..

I remember distinctly a moment during the walk.. through my numbing pain at mile 22, me sunburned, exhausted, exasperated (that I hadn’t lost any weight after walking 22 miles).

I saw Jessica 100 yards ahead, walking briskly, happily and with purpose. And I thought to myself

I was right all these years, she IS a goddess. And my soul is forever inspired.

Thank you for allowing me to share these memories with you.

And now, I present the Spirit of Hope Award to my good friend, Jessica Berman.
 

Here is my speech:

Thank you so much Vizhier.

I am humbled to be here and accept the Spirit of Hope award. Thank you to the Magnolia Council and particularly Suzann Levine for this honor.

I’ve faced many challenges in my life, more than most, yet I continue to persevere -- so I am honored to be here to talk about HOPE.

I move forward because I have strong support from my family, my husband David and our kids Abby and Leo, and a growing community of friends and other survivors.

I know I am not the only one who has experienced adversity...the loss of a loved one...or aggressive treatment for cancer. Yet, people who know me or hear my story remark that I am so STRONG and they "have no idea how I do it”...

 But I feel that what I am doing is what each of you might do too. You don’t know how strong you are until you are truly tested. You too would have hope about your future.

I never really examined the word Hope so I decided to look it up. Hope is "to cherish a desire with anticipation"; or "to expect with confidence".

Dr. Barbara Fredrickson, wrote that hope "comes into play when our circumstances are dire" and when "there’s considerable uncertainty about how things will turn out". She states that "hope literally opens us up...and removes the blinders of fear and despair and allows us to see the big picture" and have "belief in a better future".

I believe in the work that Tower Cancer Research Foundation does. I hope for a better future for myself and other cancer patients.

I also believe that the difficulties in my life strengthen me and help me see the big picture.

• I focus on what is truly important.

• I acknowledge the blessings in my life and

• I am grateful.

• I take pause in the present and am aware of special moments.

• I am learning to be my own advocate.

• I am working to be less self-critical and think positively regardless of circumstance.

I think that is something we can all strive for.

I would like to alter the definition of hope to be “to cherish a desire with anticipation even if you know that the outcome may not be what you want” -- what good does it do you to worry in the present over things that you can’t control?” I don’t think it makes you foolish to hope when things are dire. I think that is when you hope more.

So many things in life are out of our control. I got news recently that my cancer has returned. And I was in disbelief. But I’ve learned that the only thing we can control is our reaction.

So I choose to move forward and I do so with HOPE.

I know that I am not alone in my fight. I have an amazing medical team led by Philomena McAndrew at Tower Oncology, whom I’d like to recognize for her tireless devotion to her patients. I am comforted to know that many people live for years and years with and often beat metastatic disease. I plan to be one of them.

I would like to accept this award on behalf of all the other survivors, like me, who rely on each other every day for support. They motivate me with their strength and courage. We inspire hope in each other and those that surround us.

Thank you very much.

Life is so much more than our bad days. But those bad days help up truly appreciate the good ones. Yin and Yang. Balance. I search for balance every day. It definitely is not easy. Life is a process. We have a choice.

Results...or partly there of

In U.S. News I am saddened for the loss of life and the people devastated by Hurricane Sandy on the East Coast. I am even more devastated by the family whose two children were victims of a troubled nanny who fell off the deep end. Both of these things cause pain in my heart but keep my own struggles in perspective.  I am going to just keep on moving forward focusing on those things I can do to help myself.

When I I had my liver biopsy at Cedars, the doctor got four samples, "three plus an extra for Cedars to keep" he said. The samples were sent to a lab at Tower Cancer Research Foundation for analysis. Based on all the articles I have been reading I insisted that a full work up be done for prognostic markers, gene profiling, chemistry, etc. So I have been patiently, or not so patiently waiting for two and a half weeks (!!!!).  I had called Dr. McAndrew Friday but didn't get a return call until yesterday morning after I emailed her directly asking WHAT WAS UP?!?!?!?

Philomena told me that there were some problems getting all the work ups because the Lab didn't have enough sample material to complete the gene profiling. SHUT THE FRONT DOOR!!! Yes, Cedars took four samples but used extras for their own scientific analysis. How can they do that? I was in too much shock to even ask. Not sure if I will repeat the liver biopsy and if I do I will probably not go to Cedars or use the TCRF lab. Not sure who is at fault there. I am under the impression that the genetic profiling determines what genes, if any, are over expressed in the cancer and could therefore allow me to get into specific clinical trials so I am anxious to have that analysis done. I read a very interesting article yesterday about new classifications of breast cancer and so I'm also curious what type I have in this new outlook. I believe I fall under the Luminal B category. 

Article - Genetic Studies Identifies Four Main Types of Breast Cancer

Another interesting research publication I found - Oral Presentations from the Madrid Breast Cancer Conference - here I am interested in 012, 013, 014 and 015

An incredible amount of research is being done and I want to be a part of it. I also want to benefit from it too, of course. I do not want to go with "standard of care". The goal is this - to have the most aggressive treatment available with the least amount of side effects.

The only thing we do know from the biopsy is that the tumor markers have not changed. The problem is that my type of cancer is supposed to be responsive to anti-hormonal therapy but clearly it wasn't. According to the new classifications I now know that I am in the Luminal B group and therefore my cancer was not as responsive and more likely to recur. What I am not sure of is how my treatment protocol would have been or could have been different. That is the key question. 

I am on a VIP referral list at MD Anderson and I just started the intake process to become a new patient. I am leaning more and more towards that even though I love Dr. McAndrew. It is likely that I will come up with a treatment plan collectively and go back and forth between the two for treatment.  I already talked about it with Philomena and she's supportive and is already gathering reports to be helpful.  I am meeting with her Friday afternoon to discuss what she recommends and a plan to move forward.

I had another appointment with the Shaman, Lena, and I found it once again very helpful. She suggested that I consider cancer my teacher. She said the best teachers are often the most ruthless. The harder the challenge the more we can learn. SO...going forward I am going to stop calling cancer by it's diseased name. Instead I am going to call it "teacher". In the morning I am going to ask - "Teacher, what do you want me to learn today?" and I am going to listen. I am going to take a pause and really try to understand what the lesson is for me each day and do it. 

Keep Calm and Carry On!