Saturation Point

I'm at a saturation point. I'm very tired of EVERYTHING. Mostly it is because if I let my body take over my mind then I would just sleep all day or lay in bed.  I told my husband the other night at my favorite sushi joint Sugarfish that I am just zapped out. I don't want to cook. I don't want to exercise. And I was embarrassed to say that I didn't want to be running after kids or changing poopy diapers for a minute. But only a minute. The minute I do away and try to have some "me" time I feel guilty and miss the kids. Blah.

I'm just plain old tired. I don't think that's from the chemo pills. I think it's from being a mother to an active toddler and a nine month old. Not to be a whiner but man, being a mom is hard.  It's funny when people without kids wonder "gee, why can't you just RELAX?" or "why are they so disorganized?" Really?!?!? When people used to tell me "wait until you have kids then you can judge" well now I know what they are talking about.  I never understood when my friends didn't want to meet me for drinks or dinner after work because 8pm was too late. Going to sleep before 11pm was totally crazy unless you hiked all day, did yoga and went out dancing the night before. Furthermore, can I just say, even as a mother you can't look at another kid and think, "oh my kid will never do that"...pffft! Because guess what? Your kid might do even worse! Single people don't get what it is like to have a child and people with one child don't know what it's like with two kids and I, as a mother of two, can't even imagine what it would be like with three children or more.  It's exponentially difficult, particularly when they are under three.  My good friend Jeanne (a mother of two) always says, "once they are three you'll be having nice quiet dinners out with the kids, no problem".  That means we have only two years and three months to go".  Sheesh.

Abby is exhausting lately. Forget water boarding. All they need is a toddler to drive them insane and make them want to pull their hair out. She tries to tell me where to go, how to drive, where to park, what to wear, barges in on me in the shower, the toilet, my bed, won't let me hold Leo for longer than two minutes, is causing messes or trouble when I'm with her brother, or into something, somewhere, somehow that she shouldn't be when I need to leave the room for one tenth of a second, insists upon wearing ridiculous, mismatched outfits, takes off her clothes randomly, her diaper, pees on the floor (once in the cabana bathroom) yet claims she deserves a piece of "potty" candy, will only eat cheese, crackers, fruit snacks by the dozen and must be spoon fed or coaxed into eating healthier foods, refuses to take her naps on non-school days yet when she does actually fall asleep will nap for two plus hours, pushes my buttons relentlessly, misbehaves mostly in my presence and not in the presence of grandmas or nannies, will not LISTEN, even after warnings, even after asking nicely, even after a threat, she just cannot or will not stop her body, she is stubborn as hell and if she asks me WHY? one more time I think I might punch the wall.  All of this of course is taken by me with a large *sigh*...

Sometimes I wonder why we don't eat our young. Kidding. Being a parent isn't for the impatient. You work so hard every day to do and give what's best for your child and what do they do in return? Scream and cry and moan and whine and yell and spit and bite and hit and pinch. Well, there's that and then there's the simple moments in between when you're done with the bath-brushing-teeth-and-hair-putting-on-pajamas war that you roll around on the floor with your child and they giggle and laugh during your tickle fight and ask you for "more" and "more" and "more"...all of a sudden you realize that you've just been laughing and giggling yourself.  It makes going to sleep knowing you have to do it all over again the next day a little easier.

It's Erev Rosh Hashanah tonight. Shana Tova! Happy New Year. May you have a good and sweet year. This is going to be the start of a sweet new year for me. I can feel it.

Oh and I'm going to Vegas for a client dinner with David Saturday night but have coordinated it so that I am now flying with him Friday and returning solo on Sunday. Selfishly that means I get to lay in a beautiful hotel bed and sleep and sleep and sleep.  Now that is certainly sweet.

I am a Survivor!

I wrote this email to those that donated to my Avon Walk campaign. Some of the emails didn't go through so I am posting it here and thought it would be good to add it to my online blog diary.  It has been a progression for me to "accept" or call myself a survivor. More on that in another post. 

Love and light to all. Good Night!

Sent via email - 9/26/11Thank you so much for your donation to my Avon Walk in Santa Barbara. I walked 26.2 miles. With your support I raised over $25,000 towards the fight to end Breast Cancer. 

Avon asked me to be the keynote speaker at the Opening and Closing ceremonies this year. They said they were inspired by my story of survival. I was honored by the ask but wondered, am I really a survivor? After all I just finished radiation therapy at the end of July and I'm still receiving low-dose Chemotherapy. What makes me qualified to talk to thousands of people on the subject? I felt phony making a speech as a survivor and felt I would come off as naive. Over the weekend, my attitude changed...

 Well, what are the facts? 1) This year an estimated 40,000 women will die from the disease. 2) Breast cancer takes another life every 14 minutes. 3) Another woman is diagnosed with breast cancer every 3 minutes. 4) An estimated three million women are living with breast cancer. 5) One million of them don't yet know it.

I am one of three million women living with breast cancer. Walking in the Avon Walk on September 17th and 18th helped me realize that I truly am a SURVIVOR. I have persevered, with the help of my loving family and friends, to make it through one of the toughest challenges of my life. As Ashley, one of my "Team Wonder Women" teammates said (or rather, yelled), when I told her I felt "really lame" for not walking the whole marathon on the first day: "In LESS than a year you have...been diagnosed with breast cancer, went through Chemotherapy, TWICE, lost your hair TWICE, had seven weeks of radiation therapy, a mastectomy with complications and reconstruction, had several transfusions, while taking care of a toddler, oh and gave birth! - you are certainly NOT lame"!! That really drove the point home over the Walk weekend and I no longer felt like a fraud saying I was a survivor.

I walked in this walk for the one million women who don't know they have breast cancer. If I understood the risks and got tested two or three years ago my situation might have been different. My cancer might not have been so advanced. I walked for all those young mothers like me who don't think to get mammograms or ultrasounds because they are too "young" to start diagnostic testing. I don't want young mothers to ignore warning signs or lumps because they are too young or don't have any family history. I walked to raise awareness and to honor all the young mothers before me who had to fight this fight and blaze the trail for me.

Your support really means a lot to me, and to the millions of people affected by breast cancer. I will be walking next year, city not yet decided, and I sincerely hope that I can count on your support once again.

 I want to give a special shout out to my team members Vizhier, Ashley and Lindsey. They made the weekend that much more special and worthwhile. We will be holding auditions for new team members and crew for next year’s walk, I hope you can join us!

I am including a photo of an emotional moment for me from the opening ceremony and the transcript of my speech from closing ceremony.

With gratitude,

Jess

Toxic.

Since I have returned from the Avon Walk, the following has happened:

1. Abby and Leo continued swimming lessons. Abby is incredible but it is difficult, yet amazing at the same time, to watch Leo. Abby learns Swim-Float-Swim and Leo learns just to float...
2. Abby started preschool. (!?#*YIKES*!$&...more on that later)
3. I went for a follow-up with my breast surgeon, Dr. Chung. Had an ultrasound and from what I could tell at the time the lymph nodes on my right side look normal, I see white areas on the screen. I know all black is bad.  The radiologist didn't come in to recheck anything so I felt relieved.
4. The nurse at Cedars took my blood pressure and pulse and looked alarmed. She then took my pulse again to double check. She said it was very low. First it was 42 then it was 64. She asked if I was an athlete. Is that a trick question? The only exercise I've been doing other than the marathon of fighting breast cancer is training for this Avon Walk so...um, maybe? She tells me to talk to my Oncologist. I immediately start texting Angela and calling Dr. McAndrew's office. You don't want to mess with heart stuff.
5. Dr. Chung said I look great, there were 5 normal lymph nodes and that I should come back in April (seven months!) for a Breast MRI and mammogram (assuming the final reconstruction surgery is completed and my expander is out). You can't have scans with an expander in your chest because it has metal.
6. I finally got ahold of Angela and asked her if I should come in and check the heart rate issue (and the fact that I'm still bruising easily, am very tired, and had the mouth sores last week while off the Xeloda) and she wanted to see me. To answer the nurse at Cedars I have a low resting heart rate in the 60s. Good to know.
7. My blood counts are very low. My white blood counts are far below normal (even though I've been off the Chemo pills a week) so I can't resume the Xeloda this week. I had to wait to see Dr. McAndrew. She says my blood is toxic so I have to take a break. I asked if the walk had anything to do with it (because I knew David would ask) and she said no. Same thing she told me after my second round of Chemo. You can't control how your blood reacts to the Chemo. You can't take vitamins or cleanse our the toxins to treat it either. You just have to stop Chemo and resume at a later date. I'll start again Sunday. She's also changing my protocol from six months of Xeloda to four. I'm not sure if that's good or bad.
8. Dr. McAndrew prescribed Tamoxifen for me too.  Yippee Skippee!
9. Crap. Forgot to ask her about Arimedex instead of Tamoxifen. Better get on the horn again.
10. Have been so extremely exhausted. But no time to nap since it is only me and my mom this week (and Sue in evenings). No nanny. Agi's on vacation.  I have to take Abby to preschool each day and for the first two days I couldn't just drop her off and leave. I had to stay in the parent room. It's not super conducive to napping. She didn't do that great the first day but it was my fault because after I got the "OK" to go to the parent room I couldn't help myself and poked my big fat head in the window to peek and she saw me. From. Way. Across. The. Room. She started to try to figure out how to get to me so I went back in and then she wouldn't let me out of her sight after that. Darn.  Second day was a breeze. Third day was a breeze too. Thankfully!!
11. We had NO good in this house. Ordered out La Scala Monday night. Tuesday night Abby had her choice which was to go shoe shopping and then eat sushi at Nagao. I did NOT grow up like this. She acts like she owns the joint and asks Shige when Nagao is coming back from his "kay-tion".  (It was his day off). Abby let me go to Trader Joe's after school today, she was a real trooper. She did ask to take a nap in the car on the way back home but then didn't.
12. Forgot my garage clickers in the rental car last week (after repairing the damage to my car from some random stranger that didn't leave a note. $2,000 later, thank you very much asshole!!). So had to drive back to Van Nuys for them. I've been back and forth to the Valley 6 times in the past week. That's not conducive to napping.
13. Abby is convinced she is going to be Spider Man for Halloween. :(
14. Staying up way too late and need to go to sleep. That's not conducive to resting, napping, or sleeping.

GOODNIGHT!!!

I did it...

I walked 13.1 miles Saturday and another 13.1 miles Sunday...looking back two days later it didn't seem that hard to do.  Really. I really felt I could have done more on the first day but I'm also glad I didn't. I have learned that my brain and my body do not communicate so well.


The only hard part about stopping was leaving to go get massages afterwards at the Biltmore, whose spa just happened to be on the walk route. I'm laying there having my feet and legs blissfully massaged and other Walkers were reaching their mile 21 in their full marathon distance.  Made me feel guilty (but also a a little smart too)... Thank you to my college pal Olivia for taking me into the 13 and 13 and for the helpful hint of second skin (that was a foot saver for major blister prevention).  Family waiting at the finish line is pretty strong motivation!


I am so grateful to the members of "Team Wonder Women" - I could not have done this without you. Even though I know I "threatened" that I would be just fine to walk by myself if any of them flaked out on me, none of them did. I love you guys! Vizhier, Lindsey and Ashley - you seriously rock. You kept me hydrated, motivated and most of all entertained on the marathon. With lines like "OMG. When I woke up from my FOUR hour nap this afternoon the only part of my body I could move were my eyes" and to a pair of older women donning matching hot pink newsboy caps, pink back packs with pink monkeys and rhinestone flair..."Oh, look how cute they are...they're sisters!" ---- My sister (beside me) and I then look at each other laughing and say "Oh, wait...we're sisters too!" and "Don't shit on your tampon string and then complain when people say you stink"...and "Avon Walk 2011, it's the Tits!"

I cannot even tell you how many word puns regarding breasts, boobies, ta-tas, tits, tittys...need I go on, there were this past weekend. And wacky outfits. And outrageous slogans. It was fun. Santa Barbara was just gorgeous and the weather was just perfect.  We're planning on having try outs for additions to Team Wonder Women for next year's walk.
Several people have been requesting copies of my speech. Here are the two speeches - the first at the route opening and the second at closing ceremonies.  It is better to hear me tell the story (I think...) so I am posting it in the next post (it's a large file so I am having problems uploading!)

OPENING:

Good morning.

I’ve come to walk my first Avon Walk to celebrate and share my story of survival.  When I learned that I had breast cancer, I thought it had to be a mistake.  I had no family history, was young, healthy and 6 months pregnant. But it wasn’t a mistake. And it started me on one of the toughest journeys of my life.  This morning, as I prepare to walk as far as I possibly can with all of you, I’m happy to say that my husband David, my daughter Abby and my 9-month old miracle baby Leo will all be here to watch me cross the finish line.

Because no matter how far I walk, I will cross that finish line tomorrow.   I will continue to survive.

My name is Jessica Berman, from Los Angeles, California, and I’m a five month breast cancer survivor. I’m in it to end it for me, for my daughter, and for every other person fighting breast cancer, everywhere.

CLOSING:

Good afternoon fellow walkers, crew, family and friends.  My name is Jessica Berman, from Los Angeles, California, and I am a 5-month breast cancer survivor. 

My uncle is a marathon runner and I’ve always been fascinated by the idea of taking on such a physically and mentally challenging journey.  I’ve never run 26.2 miles, but my life has certainly been a journey that’s required endurance, perseverance and unending support.  

When I got the stunning diagnosis of stage 3c breast cancer, I honestly thought that the universe was out to get me.  I was 34, had no family history and was one of the healthiest people I knew.  I had a one and a half year old girl, Abby, and was six months pregnant.  This after suffering the loss of Abby’s twin brother Bennett to SIDS the year before. 

But as bad as all this was, I learned the universe was not out to get me.  I carried baby Leo full term and our little miracle is here with me today with my husband and my daughter.  I whole-heartedly believe that my diagnosis woke me up to living. I now know how every day of life is a gift.  It’s not the years in your life, but the life in your years, right?  And I have so much love and support from my family, my friends, my medical team and fellow survivors, like you, who are such an inspiration of strength and bravery.

The best advice I got when I was diagnosed was that battling breast cancer is like a marathon.  Just when you think you’re getting to the end, you’ve got more to go. Just when you think your body and spirit will give up, you find a way to keep going. And you need just as much support at mile 1 as you do at mile 26.

As I prepare to finish my treatments, the Avon Walk is my mile 26.   Preparing for this weekend kept me going when times were hard, because I knew that thousands of people would be here to support people like me – and to unite for this cause.    When I crossed that finish line today I started the next phase of my life with my family.   Now I feel like cancer is behind us…and lots of adventures are ahead.  I may not have run a marathon – yet – but I walked 26.2 miles and raised more than $25,000 in the fight against breast cancer.

I’ve been through a lot in my life, but I can honestly say that I feel lucky.  I don’t mourn the life I had before in the “old” normal. Instead I am embracing this “new” normal because I am so very thankful to be here, to see my kids grow and thrive, to see my body miraculously dealing with all the drugs I am taking yet still allowing me to feel great. I do something every day to make my life worthwhile.  I’ve survived the marathon of breast cancer. And like all of you, I came here this weekend to help make sure that others who are not as lucky get their chance to become survivors too.  Because people need help, right here in our neighborhoods.  And the money we’ve raised this weekend will go a long way to helping men and women cross their own finish lines and survive.

To tell us more about how the funds we’ve raised will be put to work right here, right now, please welcome the President of the Avon Foundation for Women, Carol Kurzig.

Freaking out!

Less than 5 days to go until the walk!  I am starting to freak out a little.  I did another 5.5 mile walk today.  They are becoming very easy to do.  It took me an hour, which means I walked at a rate of 5.5 miles per hour.  The goal for the long walk is to walk 3-4 miles per hour so I can do the distance.  I am still thinking only 13.1 and 13.1.  Only because I can tell my body is still weak from the Xeloda (chemo pills) and it won't be fully out of my system by the walk.  I am bruising very easily which is annoying but doesn't hurt and my stomach was feeling a bit off today.  I still feel very, very good, however, in general.  JLTD Baby...

I wasn't able to find a house on Carpinteria state beach so we have a block of rooms at the Hyatt and I still have my room at the Fess Parker. We are going to take the train up there from Van Nuys. David thinks I am nuts but I think I am a genius!  We take the train, play around for an hour and a half and then a shuttle takes us directly to the hotel from the station. How exciting for Abby and Leo to take a train! And for me!  I haven't done it since the last time I was in Europe.  I'm sure it's not going to be the Orient Express (as David keeps reminding me) but it is something new and different (and doesn't require being stuck in a car with a toddler and a baby for a 1.5+ hour drive!).  This is also a little getaway before Abby starts school on Monday.  Oh my gosh, she is getting big so fast!  She's not my little baby anymore.  

On a tangent on the kids....Abby is doing her refreshers from Infant Swimming Resource and despite her protesting the first two lessons she is doing awesome! She has pretty incredible breath control and is picking up the swim-float-swim sequence much faster this time.  Perhaps there is some muscle memory from last summer.  She has the every morning for the next month.  This may make school a bit of a challenge since she might struggle being tired in the afternoon... It will be 10 minutes of swimming then lunch then school. BUT she desperately wants to give up her nap so maybe it will work out.  She can go to sleep before 7 and give Mommy and Daddy some free time. Won't that be nice!  Fingers crossed. 

Leo, my beautiful, sweet, precious boy. He got his teeth last week. He cut them the day before we went to Pelican Hill. He has his two bottom (same time, poor kid) and a third on the bottom plus it looks like his top right just poked through two days ago. Oh, he is just so yummy.  He gives me the hugest smiles and is just such a joy.  What a blessing our kids are to us!!

I've raised almost $25,000 clams for this walk.  It is such an amazing feeling!!  I feel wonderful about raising the money for Avon because it supports so many research programs - including the two that I recently signed up for 1) the young women's breast cancer study and 2) the mindfulness meditation study.  

If you haven't done so already could you please sign up for Avon's Army of Women?  We need to get to ONE MILLION healthy women strong!  They send out periodic emails looking for volunteers for research studies.  If I see one that applies to me I respond, if not you forward it to someone that you think it could apply to or just delete it.  It's that simple.  

The Dr. Susan Love Research Foundation's Love/Avon Army of Women is made possible thanks to a grant from the Avon Foundation for women. Their revolutionary initiative has two key goals:

• To recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all.
• To challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

Please join in this movement that will take us beyond a cure by creating new opportunities to study what causes breast cancer—and how to prevent it.

Wow!

Thanks to friends like you I have raised over $23,000 in the fight against Breast Cancer!
THANK YOU, THANK YOU, THANK YOU!!!

I just finished a ten mile walk and I feel good. Tomorrow a cool down with another 5.  I'm still torn between doing just 13.1 the first day and 13.1 the second day or attempt the full 26.2 the first day and then the 13.1 the second day...

Dr. McAndrew's nurse Angela says I am a genius because I called the ask if I should be on the Xeloda when I do this walk and she said NO!  That she is so glad that I inquired about this because I could have had major side effects from the drug.  Now I will stop taking it tomorrow evening and resume the Tuesday after the walk.  That means that I will feel even better than I do right now and the drug will leave my system before the walk.

Feeling compelled

I subscribe to the "mothers with cancer" blog and over the long weekend there was a post I couldn't stop thinking about because it elicited such a strong response that it kept stewing inside me.  I had five minutes this morning when Abby slept in to hurry up and write a comment back...

Here is the post (with all original links) and below it my response to the author.  It's interesting. I joined the group because I wanted fresh perspective from these other women.  Instead I am finding moping, grieving, complaining type of posts with a few fun or beneficial posts thrown in.  Is this to be the reality of young women living or having survived breast cancer?  I may die tomorrow but I'm not going to spend ONE second thinking about it today.  Why waste any part of a 24 hour, or make that 18 hour period, I have each day on something I can't control?

smiling can’t cheat death (by laurie)I’m a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.
And I don’t, for even a second, think that people who worried too much, or got mad or who didn’t have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.
In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments’ side effects. But luck plays a big role in survival as well.
I’ve been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.
Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase “lost his battle with cancer.” Jack didn’t lose a battle – there was no failure on his part – he got cancer and died. No amount of positive thinking could have changed that.

(Shout out to my friend Sharon, who first used the phrase “tyranny of positive thinking” in my presence. She has kindred spirits out there, too).

My comment:

Jessica Berman says:  I agree that dying from cancer can be a complete crap shoot. I agree that stifling negative emotions is hurtful – that as they come up you MUST feel them to work them out. Suppressing emotions is exactly what the “new age” followers say causes dis-ease. You are actually agreeing with the Louise Hays of the world without acknowledging it. What I don’t agree with in your post is saying that a positive attitude isn’t important. It is extremely important. I found the other two links of the blog posts a bit extreme. I agree that these “support” groups that don’t allow honest, raw emotions are in fact NOT supportive or even remotely helpful (they are in fact causing even more dis-ease by not allowing their members to discuss their true feelings). Perhaps I am naive since I was diagnosed only a year ago while six months pregnant with my second child or because I have only been NED for 5 months….but I do whole-heartedly feel that breast cancer woke me up to life and to living. And believe me I was a pretty happy person before diagnosis..or so I thought. My diagnosis made me face my own mortality. It made me face deep dark demons, find out my true friends and support network, stop living a life of obligation, resentment, strife and to learn to forgive and move on; it helped me separate the wheat from the chaff, to seek out only those things that give me pleasure and make me happy because life is too short. Life is too precious. A positive attitude has helped me live my days in the POSITIVE…so rather than thinking “Damn it, I have to take those stupid Xeloda chemo pills again” — I have shifted to “I am going to take these amazing pills that will help save my life and be thankful that this medicine is available to me”… YES, I deal with cancer on a daily basis, my life is forever changed since my diagnosis. Sometimes I just look at my husband or myself in the mirror and say “well, this SUCKS” but then as soon as the words leave my lips I feel better for acknowledging that ugly feeling and quickly move on to thinking that my life could be a lot worse…It could be a life that was taken tragically in an accident or natural disaster as I watch the humbling morning news. But I don’t mourn the life I had before in the “old” normal..instead I am embracing this new normal because I am so very thankful to be here, to see my kids grow and thrive, to see my body miraculously dealing with all the drugs I am taking and still allow me to feel great. I truly feel that living life with a positive attitude, regardless of the length of your life, will allow you to live a more fulfilled life. It’s not the years in your life but the life in your years, right? I’d much rather be thinking and feeling positive in my time left on earth than wallowing in fear, self-doubt, anger or resentment in the time I have left. Life is precious so I am living it in the present moment and enjoying the NOW. Being present AND POSITIVE in each and every moment as much as possible…

Friends, I hope you are finding uplifting moments in each day and if you have strife I hope that having a positive attitude gives you the grace to face any challenge.

All my love,
Jess

And now for Celebrity Jeopardy!!

I love celebrity jeopardy.  Saturday night live just isn't as good as it use to be. Ahhhh, I love me some Sean Connery.  This is one of my favorite episodes...   Turd Ferguson!  I am starting out with this because I want to think about anything other than what I am about to write about.  I have so much research to do I feel like I am getting back to that feeling I had when I was first diagnosed...I'm back in college in a great lecture hall and WHAMMO --- Pop Quiz in Latin and your life depends on it!  It's kind of a weird sinking feeling.

In terms of sobering, reality biting news, I saw Dr. Hayden today.  Given that I am still on Xeloda she doesn't want to do my final reconstruction surgery until the beginning of next year once I have finished the pills.  Uhhhhhhh.  That means I'll be Betty-Lopsided-Boop for another few months.  At least the prosthesis I bought is realistic and amazing.  I'll be getting my $300 worth out of it since I will be relying on for a little while longer.  But that's not what is really bothering me.

My tumor is Estrogen Receptor positive.  That means Estrogen makes tumors grow. It also means I have to shut down Estrogen production in my body.  Lupron shuts down the production of estrogen in my ovaries and then tamoxifen (pending - more on this in a minute) will shut down estrogen production in my adrenal gland. Estrogen is pretty important in the female body and not just for sexual function.

To understand the roles estrogens play in women, it is important to understand something about hormones in general. Hormones are vital chemical substances in humans and animals. Often referred to as "chemical messengers," hormones carry information and instructions from one group of cells to another. In the human body, hormones influence almost every cell, organ and function. They regulate our growth, development, metabolism, tissue function, sexual function, reproduction, the way our bodies use food, the reaction of our bodies to emergencies and even our moods.

 The estrogenic hormones are uniquely responsible for the growth and development of female sexual characteristics and reproduction in both humans and animals. 

In women, estrogen circulates in the bloodstream and binds to estrogen receptors on cells in targeted tissues, affecting not only the breasts and uterus, but also the brain, bone, liver, heart and other tissues.

 Estrogen controls growth of the uterine lining during the first part of the menstrual cycle, causes changes in the breasts during adolescence and pregnancy and regulates various other metabolic processes, including bone growth and cholesterol levels.

Estrogen produced by the ovaries helps prevent bone loss and works together with calcium, vitamin D and other hormones and minerals to build bones. Osteoporosis occurs when bones become too weak and brittle to support normal activities.

Okay, so Lupron shuts down my ovaries and forces me into menopause.  But I DO NOT know if that means I am still considered pre or post menopause now since it is chemically induced. I think I'm still considered pre-menopausal due to the fact that production would resume off of the drugs. Additionally, the lack of estrogen from ovarian ablation weakens my bones over time hence the Zomeda infusion. 

Dr. Hayden suggested that I look into Arimidex rather than Tamoxifen, because Arimedex is more tolerable, less harsh on the bones, and was shown to be more effective in preventing recurrence in post-menopausal women. But I don't think I'm post-menopausal. Arimedex doe NOT work for pre-menopausal women. 

Both Arimidex and tamoxifen work by exerting an effect on estrogen, which feeds the majority of breast cancers and helps them grow. Arimidex belongs to a class of drugs called aromatase inhibitors, which limit the amount of estrogen the body produces in postmenopausal women. Arimidex works by preventing the conversion of steroids made by the adrenal gland into estrogen.

In a woman who has gone through menopause, the adrenal gland is the largest source of estrogen. Arimidex doesn't work in women who are premenopausal because their ovaries make most of their estrogen.

Tamoxifen belongs to a class of drugs called selective estrogen receptor modulators (SERMs), which work by blocking estrogen from binding to its receptors in the breast. This drug works as well in both premenopausal and postmenopausal women.

Are you following along?  I can barely keep up. I now have 13,568 questions for Philomena. 

Estrogen is the common link between most breast cancer risk factors, i.e., genetic, reproductive, dietary, lifestyle and environmental. It both stimulates the division of breast cells (healthy as well as cancerous) and, especially in its 'bad' form, increases the risk of breast cancer. Thus, hormonal drugs such as tamoxifen that block the effects of estrogen on the breast were expected to reduce the risk of breast cancer recurring in women treated for breast cancer. 

Tamoxifen acts as a weak estrogen by competing for estrogen receptors much as phyto-estrogens do. Like phyto-estrogens, tamoxifen has mild estrogenic properties but is considered an anti-estrogen since it inhibits the activity of regular estrogens. More accurately, tamoxifen is an estrogen-blocker. It fights breast cancer by competing with estrogen for space on estrogen receptors in the tumor tissue. Every tamoxifen molecule that hooks onto an estrogen receptor prevents an estrogen molecule from linking up at the same site. Without a steady supply of estrogen, cells in an estrogen-receptor-positive (ER+) tumor do not thrive and the tumor's ability to spread is reduced. 

However, tamoxifen exhibited two conflicting characteristics. It could act either as an anti-estrogen or as an estrogen. Therefore, while tamoxifen is anti-estrogenic to the breast, it also acts as an estrogen to the uterus and, to a lesser extent, the heart, blood vessels and bone. So, although it initially showed the tendency to counter breast cancer recurrence, it would soon be revealed that it also promoted particularly aggressive uterine and liver cancers, caused fatal blood clots and interfered with many other functions.

Unfuckingbelievable.  I'm not eligible for the better drug Arimidex so I have to take tamoxifen which can lead to more serious side effects like oh, um, aggressive uterine cancer? WTF. That leads us to the next topic of conversation with Dr. Hayden. My ovaries.  I wonder if I have an Oopherectomy if that means I am eligible for Arimidex?  Is that the best course of treatment?

Hayden thought I may want to have my ovaries removed but wanted me to talk to Philomena about it. Hayden suggests the less synthetic drugs in my system the better.  I have talked to Philomena about that and she seems to think it is up to me.  As if I have the benefit of years of studying and practicing medicine under my belt to make a heavy decision like that. Really? Even more alarming, I read that for young women with breast cancer being forced into menopause and removing ovaries at a young age can lead to shorter life expectancy and a host of other SERIOUS side effects and long term outcomes.  Oh yeah, I am not kidding.

Oophorectomy (removal of ovaries) is frequently done together with hysterectomy to decrease the risk of ovarian cancer. However, recent studies have shown that prophylactic oophorectomy without an urgent medical indication decreases a woman's long-term survival rates substantially and has other serious adverse effects, particularly in terms of inducing early-onset-osteoporosis through removal of the major sources of female hormonal production. This effect is not limited to pre-menopausal women; even women who have already entered menopause were shown to have experienced a decrease in long-term survivability post-oophorectomy. 

Here is an an excerpt from the study done on "elective" ovary removal:

• Objective. To review the data on long-term outcomes in women who underwent prophylactic bilateral oophorectomy, a common surgical procedure that has more than doubled in frequency since the 1960s.

• Study design. Literature review of the published data on the consequencesof prophylactic bilateral oophorectomy. Special emphasis was given to the Mayo Clinic Cohort Study of Oophorectomy and Aging.

• Results. There is a growing body of evidence suggesting that the premature loss of ovarian function caused by bilateral oophorectomy performed before natural menopause is associated with several negative outcomes. In particular, studies have revealed an increased risk of premature death, cardiovascular disease, cognitive impairment or dementia, parkinsonism, osteoporosis and bone fractures, decline in psychological wellbeing and decline in sexual function. The effects involve different organs (e.g. heart, bone, or brain), and different functions within organs (e.g. cognitive, motor, or emotional brain functions). Estrogen treatment may prevent some but not all of these negative outcomes.

• Conclusion. The potential adverse effects of prophylactic bilateral oophorectomy on heart health, neurological health, bone health and quality of life should be carefully weighed against its potential benefits for cancer risk reduction in women at average risk of ovarian cancer.

I made an appointment with Dr. Daly, my fabulous OB/GYN next Wednesday to discuss.  However, I don't see Philomena until October 12th.  That is way too long to wait and stew on all this information.  I'm going to try to move that up. I will need to bring two different people with me plus a tape recorder to RECORD the conversation so I can remember everything.  I feel like I've had the same discussion with her several times and each time it seems like new information and then I forget what she says.  I'm not going crazy though or losing brain cells.  Hayden told me that Lupron effects my short term memory. Anyway, are you feeling overwhelmed like I am yet?

I wish I could make these decisions neatly in a vacuum.  It just isn't possible.

Revised Schedule:

1. Totally 80's night Pool Circle at the Hollywood Bowl - tomorrow night
2. Weekend at a Villa at Pelican Hill in Newport Beach for Labor Day long weekend
3. Lupron Shot September 8th
4. Walk in Avon Walk September 16th-18th!!
5. Abby starts school September 19th
6. See Dr. Chung for ultrasound of right lymph nodes (the side I had the scare on just before the mastectomy) and general follow-up appointment late September
7. See Philomena October 12th.

I added the personal things in there for two reasons.  1) to show that I am forging ahead and starting to relive my life a little more like I was before and 2) to show how conflicting this all is.  Just when I feel I am gaining strides and looking towards the future I have to come back to reality that I will be living with cancer treatment for the next five years or more.  Two steps forward and one step back.