Great news

Found out yesterday that my scans were clear. All is good. HALLELUJAH!!!!

Missing the kids!

Here are some fun videos of Leo and Abby that I wanted to share since I am missing the babies (of course).

This makes me laugh every time I see it. He is clearly having a great time with Mommy!

This one was so cute of my little munchkin Abby. I wanted to get her to say America because she always sees the flag and says America! What a great little Patriot we have. God Bless the US of A!

A Fun Break

I'm joining my husband David on a little business trip to Chicago. It's very selfish but so much fun. I'm pretty hung over today so I'm not too happy about that but I am so happy about life. Best meal of my life last night, thank you to Kristen for the recommendation. We went to a restaurant in Lincoln Park called L2O and it was amazing! It's nice to get away and have special time away as a couple. I've been reading those headlines from some of the mommy sites that talk about whether you should love your husband or your kids more. How do you choose something like that? My heart is big enough to love them all. I just love them all in different ways. Most importantly I have to leave room to love myself.  Taking time for self care. Learning to do those things guilt free and not tell myself I am being selfish. My baby group leader, Allison, talks about that all the time. Learning to know what we need to keep our batteries charged and not feeling guilty about doing those things so that we can be the best mommies we can be. So how's that for an answer. If I was writing to that magazine I'd say, I don't love my husband or my kids more, I love ME more. I have to keep myself healthy and sane so that I can be the best wife and mother I can be.

I was having a hard time with the self love concept over the past few days. A friend of mine was upset with me over a social faux pas I made and our conversation really got under my skin. I made an honest mistake and even though I explained it she was still angry. She, in her anger, made very hurtful statements and attacked my character. I understand when your feelings are hurt you may get angry but I think there is a lesson here to be learned.  Words cannot be unsaid. Sometimes we get angry and we say things we don't mean. Those words can't be taken back.  I've been thinking about what she said to me and I know I am NONE of those things.  But now I sit here thinking is that what she really thinks of me?

I found this posting on a blog titled "Happy Holidays! Now Watch What You Say Because It Can't Be Unsaid" and want to share it. I know in the past I've talked about not keeping feelings inside but there is a way to properly share your feelings yet still guard your words.

If you believe you should be able to say anything you want to others, especially the people closest to you, then you’ll end up saying things to people when you’re hurt, angry or depressed that have the potential to destroy the relationship. Your bad feelings will come and go, but that person will hear the echoes of those poisonous things you said for years to come. 

There’s a skillful in-between that separates keeping your negative feelings “locked up inside” and simply blasting people with your frustration and despair. The in-between lies in developing enough impulse control to hold your tongue just long enough to decide whether to say something and, if you determine it’s important to, then how to say something for the best possible effect. 

Impulse control means taking a pause, a deliberate and measured pause, before you say or respond to something in order to consider the implications and possible consequences of what you want to say.

What may be only a three-second pause according to the clock can be a very long time subjectively, long enough for you to consider your options and choose one deliberately based on what you think will be most helpful in the circumstances. Learning to pause before you reply prevents “snap” reactions that can make things worse by impulsively saying something hurtful to the person or by fanning the flames of anger and escalating conflict to an even higher level. 

“Getting it off your chest” may initially feel good to you, but can lead you to feel even worse about yourself when later, after you cool off, you realize you were out of line. It would be nice to prevent having to apologize by handling it well at the time. Once you’ve said something thoughtless, it’s been said. Once the bell has been rung, you can’t un-ring it.

I know that I am a good hearted and loving person. I am not a hurtful person. I know that I made a mistake even if in my mind it was unintentional. I would never purposely do something to hurt my friend and I told her that. There was nothing I could do but apologize for my oversight. I hope she can understand. But now I have to, in turn, move on and try to forget her words.

I am reading about meditation and trying to do it. It seems like it should be so SIMPLE. Sit still and not think. Sit still and not be distracted. Sit still and listen to your breath. And yet I have the hardest time doing it. Learning to meditate is really stressing me out!  Ha ha ha.

I got a bad phone call from Karla at Dr. McAndrew's office. Our insurance company has decided not to cover the PET part of my PET/CT scan. They only want to cover the CAT scan which scans from my chin to my pelvis. The whole purpose of the scan was because I've been complaining for months about dull headaches. I don't know if they are from the lupron or the tamoxifen or from cancer. Every time I tell Dr. McAndrew about it she asks "when was your last brain MRI?"...ugh, that never makes me feel good. Seriously, almost every visit she does that. The issue is I can't have another brain MRI until the expander is out and I have my final reconstruction surgery.  I want to know how a CAT scan of my abdomen will tell me if cancer has spread to my brain? Oh, right, it doesn't!!!! This is where the insurance nightmare starts. The PET is out of policy unless the CAT scan reveals something abnormal. Oh wonderful.  FUN TIMES!!

Well I'm not going to think about that anymore since David just returned from his meetings and now it's time to go explore around town.

Some levity

Being a mom is HARD WORK and I'm just getting started. My sister in law Trish sent this to me months ago and I just got around to watching it. I am crying laughing but also cringing at the thought of what is to come...

Speaking of piano lessons here is Leo three months ago taking his "first" piano lesson. He LOVED it. I can't believe I haven't posted this year. Three months ago he was so "tiny"...now he's 27+ pounds and if Lucy from Peanuts was his friend she might just call him "block head"...

Just Diagnosed?

If you have just been diagnosed I want you to know that I am here if you want to talk. At first hearing the words "you have cancer" turns your world upside down and inside out. I look back over the past year and realize that there have been some major lows and I was scared for a good, long part of that year but being on the other side now I feel I can tell you that you will get through this (and I'm still not entirely done with all my milestones).

Your life will be forever changed. I know mine is. I had breast cancer. Everything is different (physically, mentally, emotionally, and spiritually) yet many things are the same. You can't control that you have cancer but you can control how you respond to it, treat it, and move forward.

You can email me by clicking on the "email" photo.  I look forward to hearing from you and if I don't please know that there are many people who you can turn to for support. Your family and friends will be there for you. I found that I leaned on other cancer survivors the most though when times got tough; they truly understood what I was going through. There are also free cancer support groups, check out the cancer support community in your area and online cancer forums (just take many websites with a grain of salt, an open mind, and a list to write questions to ask your oncologist, there is a ton of misleading information out there).

Thank you for listening and reading. I wish you comfort and ease on your journey.

Taking stock

I cried in pilates today. I am working hard. Extremely hard. I took a private ballet lesson yesterday too. My teacher told me I am making incredible progress but that I seem weak. Weaker than before. She suggested I get my blood checked just to make sure. I don't want to. I'm having a brief moment of being in denial. I just don't want to do it at the moment. It's the beginning of the Holiday season and I don't want to "go there"...I have a PET/CT scheduled December 12th and an appointment with Dr. McAndrew on the 14th to review the results. I can get it all done at that time. I don't feel I have cancer and the scan will confirm it. I am choosing to believe this; that means that I don't need to make time to schedule an extra appointment...I'm tired sure, but I am also a mom to two young children and that will make ANYONE tired.

This is a photo of me at my weakest point, or correction, one of my weaker moments of the past year. I still can't decide if it was the mastectomy or the radiation that was hardest but I digress. It was taken by my beautiful friend Ashley as I was getting some platelets after my mastectomy in late April. I do not recognize this person. If you saw me today you would have NO idea that I had been to hell and back in the past year. Nor would you believe that I am the person in this photo. As Thanksgiving approached this year I knew I had a lot to be thankful for in my life. I am so happy not to be at that weak point anymore. I am thrilled to be in a place where I can begin to move forward but now knowing new depths to my soul and character. 

I am so thankful to announce that I am OFF the lexapro and trazedone. No more anti-depressants or sleeping aids. I started taking those just after this photo was taken actually. I feel I am making things work to the best of my abilities. I don't want excess drugs in my system. I already have to take the lupron and tamoxifen for 5 years and that is enough.

Happy Thanksgiving everyone. It is a great opportunity to "take stock" of what you are grateful for in your life and for acknowledging all that you have achieved, learned, built, shared, loved, and gave back in the past year and to make plans for all that you hope to do in the coming year to make you even more grateful the following year.

Life is GOOD

I love my husband. Life is good. Family is precious. I have amazing, beautiful, healthy babies. Chemo is done. I am feeling better every day. My hair is growing in curly. What the hell. I am happy beyond words. I look forward to each and every day with anticipation of all of life's possibilities and opportunities. I have incredible empathy for others and want to make this world a more beautiful and peaceful place. Happy 7th Anniversary David. I love you.

Almost there

I am almost there.  Almost done with the Chemo pills. I just have to make it until Sunday. I can feel the effects starting to drag me down as the drug builds up in my system. Next week I need to DETOX and rest. I want to rest all the time but it hasn't been possible. I'm still working through it but feeling pretty good. I can't complain really. Happy to almost be done with this hurdle!! Five more days!!!!

File this under TMI

I want off the fucking Lexapro. I'm reading all these terrible stories about people who try to wean and have horrific withdrawal symptoms. I want off of this drug immediately.  I've emailed Philomena to get a proper weaning schedule and plan to stick with it. Fucking Eli Lilly. There is a side effect of the SSRI drugs that have be beyond frustrated and had I known I would not have started them.  You can email me if you want to know about it. I can't post about it and still be a proper lady.

I've been on the Tamoxifen for 2 weeks now. I re-started the Xeloda chemo pills yesterday, that means I only have two weeks less two days of Chemo pills and then I am done. Woo hoo!!

I have headaches. General full achy ones. When I mentioned it to Philomena she immediately asked when my last brain MRI was. :(  I hate that.  It's probably just a stupid headache from clenching my teeth. I've only done yoga twice in the last month and have resolved to do it more often. I need to learn how to calm the hell down people.  Now that I have more energy and am feeling better I have moved with fervor to get things back to normal. I have been organizing, cleansing the house, purging excess and taking stock.  That is within the house and within myself.  I told myself today to CALM DOWN. I decide I feel great and then want to do 137,658 things all at once and then I get mad that they can't be done faster.  I have to learn to be patient. My mom laughed at me about that this week. I think she told me "patience is not something that comes easily to you"...

It's so funny. I feel like I'm doing all these things so I can relax. Maybe I should JUST stop and relax.
S T O P. Do things more slowly and deliberately.  I was always the "if you want something done ask the busiest person in the room" type of girls. I don't know how to shut that off. This week I decided to clean out the garage, then the office, oh then the bookshelves in the bedroom which then led to two different projects - updating the upstairs gallery wall and design a photo project for the media room mantel with the antique bronze frames that I found. Oh then, hang art in the powder room and then display all of David's deal tombstones properly. Oh, call the contractor, the cabinet maker, the pool fence guys, Mr. Babyproofer, Art Gallery Services, get a haircut, go to the dermatologist, have two separate trial days with two babysitters, have a lymph massage, try to have lunch with a friend, go to yoga with a friend, cook dinner and sleep train Leo...

UGH UGH UGH...I need to slow down, I need to calm down. Life isn't going anywhere. Or is it? Maybe I'm afraid it will so I try too hard to live each day like it's my last.  This will be my main issue going forward I imagine. Learning to find the proper balance between enjoying the present moment and maximizing the present moment. Relax vs. Achieve.

I wanted to go to Yoga today but my back went out after bending over to pick up 30 pounds of Gorgeous Baby Boy. It was a pinched nerve or something that just kept coming and going. I felt I could walk best hunched over while leaning to one side a la hunchback of Notre Dame.

Tomorrow I am taking the day off and swimming with Abby or if it is too cold then taking her to the pumpkin patch. Then after I drop her off at school I can relax during my lymph massage.

Reminder not to schedule something EVERY day of the week. I schedule when I will relax. That is just beyond ridiculous.

Learning from Cancer!

I'm going to steal from a posting from my fabulous PWBC (Pregnant with Breast Cancer) trail blazer Sharon and expand upon some observations.

1) I am AMAZING. 

• Turning 35 with cancer makes you think about life. And death. A lot. The past year has taught me that I am amazing. Really. When all of this craziness began, people kept telling me how brave and strong and inspirational I was. I would just shrug and say that I was doing what anyone would do. Wouldn't everyone diagnosed with cancer while pregnant choose to have their baby despite making chemo longer and more difficult to handle? Wouldn't everyone have chemo and then take their son to the park a few hours later? Wouldn't everyone continue to see their friends and family on a regular basis during treatment? Wouldn't everyone get up in the middle of the night or early morning with their newborn? Wouldn't everyone rarely complain about what they're going through and feeling? What I've learned this year is that no, they wouldn't.  

• I agree whole-heartedly. Sharon is amazing. I am amazing. We are warriors. A friend of mine, Carrie G. sent me a message saying the "God only tests the very strong"...that meant a lot to me and I kept that top of my mind when times got tough.  You DO what you need to do to be a mother and survive for your babies. You put any selfish thought, action, desire away for the lives of your children.  That goes for mothers all over the planet. Not just cancer survivors. MOTHERS are amazing. Mom and Grandma I love you.

• If you didn't know I had cancer and what I was going through, you would never know from meeting me. Or being with me. Or seeing me. You might think my hair/fashion choices were questionable (since I still have no clothes that fit properly). But you wouldn't know. A dear friend recently sent me the most beautiful email that, among other things, said that I am "so fucking tough" that no one would ever know what is going on with me and that I am courageous and brave and she doesn't know how I found the ability to fight the way I do. My Aunt also left me a similar message after seeing me at the park with Miles 40 minutes after finishing chemo. She said that I "blow her mind" and that she hopes I give myself credit for being so amazing. And what I have learned this past year is that they are right. No need to shrug or think that everyone would act the way I'm acting. I am strong and a warrior and a miracle and tougher than pretty much anyone. Period. So fuck you cancer. I am amazing. 

• Most people didn't believe I was going through treatment. I got tons of "you'd never know" and "you look amazing" - I'm sure sometimes they were just being nice but other times I hid it pretty well and seemed like any other doting mother.  I found ways to get rid of the things in my life that weren't priorities so I could tend to my health and to the needs of my family first and that preoccupied my time SO much that I didn't have time for the bullshit. I also didn't have time to be "sick" in bed.  In many ways having babies helped in that regard, I didn't have time to wallow on how I felt, I just had to DO and BE and GO...

• I am amazing for doing the Avon Walk (walking 26.2 miles and speaking to the crowd), just after radiation, with low blood counts from Xeloda and while on Lupron. I fucking rock. As one friend said "You are amaze-balls" - that had me laughing out loud. I do honor my awesomeness. :)

 2) Things I've Learned From Cancer (again, copying from Sharon)

I am not as Vain as I Thought.

• I am not as vain as I thought, or perhaps I'm just delusional about what I look like. 

• This had me in stitches since I was very delusional about what I looked like. I tried at first. Wearing the wig, wearing high heels to social events, trying to find cute maternity clothes and put make-up on. That lasted about five seconds. I have never been the sort of make-up wearing, picking outfits, purses and jewelry kind of girl. (Except in my pageant days!) I like to look nice but I am low-key. At a a certain point I didn't like anything synthetic or unnatural touching my skin that included jewelry, a watch or head coverings. As I gained perspective on what was really important, MY HEALTH, I stopped caring so much about the material things and putting on a show to keep up with other people. I put vanity aside. I feel more beautiful this way, strong in my spirit and I believe that truly shines through. And yes, I'm blessed with good genes so it's not like I'm turning into a pumpkin or anything and I acknowledge those good genes for affording me the opportunity to not wear a ton of make-up or go overboard with styling to appear attractive. I said I'm not AS vain as I thought but I'm still a little vain... 

• My entire head is now covered in hair. I don't think I look sick anymore. Weird in a pregnant-military-chick sort of way, but not sick. Before I finished cycle 1 of chemo, I informed Boris that I was going to buy makeup and start wearing it when my hair grew back in. "And I want to wear nice clothes every day. No sweats or anything." Not a fan of makeup or dressing up (and I rarely do either), Boris wanted to know why. "Because there's a fine line between having short hair and looking fashionable and chic, and looking butch," I told him.  

• I had those thoughts too, thought in order to mask my treatment I could try to play off my short hair like I was G.I. Jane but that proved futile while pregnant. Pregnant and bald. Mostly I tried because I wanted things to go back to normal, so that if I didn't look sick you wouldn't know that I was going through treatment.  I also didn't want David to be embarrassed of me. He would shudder that I wrote that but it's true. What wife doesn't want to appear attractive to the person she loves most?  Anyway, the minute I sprouted the tiniest bit of hair so I looked military-chic I ditched the $3,000 wig, scarves, hats, et al. David liked me better without all of that. (Or so he says). Thank God for good men in this world. 

• When I go out, I think I make people far more uncomfortable than I feel. When my hair was more sparse (and yes, I still went out sans head coverings), people would stare or try to be discreet (you know when someone turns around pretending to look at something else but you know they're really looking at you), but I'd just smile or wave and they'd nervously smile back and turn around quickly...But now that my hair is thick, I don't feel uncomfortable at all and most of the stares have stopped. 

• This is funny since at first I was the uncomfortable one because I was worried about what other people thought. That's why I wore the wig and invested in multiple head coverings. Was it vanity or insecurity or was it me not wanting to make other people feel uncomfortable? Then I got smart and didn't give a crap. I had cancer. I was pregnant. I was fighting the fight. I was a warrior. I felt I gave a face to breast cancer and wanted to spread the word that you could receive treatment while pregnant, have a healthy baby and survive. 

People Like Talking About Hair.

• My new do elicits a lot of unsolicited conversations. They're mostly friendly and encouraging and it's pretty fascinating. A mom I see often at the park told me she didn't recognize me with my "new haircut." I'm not sure who chooses this haircut, but it was nice that she didn't think my hair screamed cancer.  

• I get people who just "HAVE" to tell me how much they love my hair. How I have such a gorgeous little face to be able to pull off such a cute haircut. How they wish they had the courage to cut their hair short. How they feel inspired by seeing my hair cut that they want to go get their hair cut. I have had men follow me around the grocery store then come up to me and tell me that my hair is "awesome" or "looks amazing"; that is of course when I decided to start wearing my wedding ring again. I have no idea why having such a short hair "cut" illicits such strong responses from people.  Often times I would just say "thank you" but other times I would thank people for thinking it was a choice. I knew if I said that I would have to explain but I like sharing my story of survival and it's not just for shock value. I want people to not be afraid and to learn from my experience. 

Compliments.

• Never in my whole life have I been told so often that I look great. Someone tells me on a daily basis. I'm not sure if I looked like hell before cancer or if people are just expecting me to look like death and are pleasantly surprised that I don't, but the compliments are never ending (not complaining!).  

• People ask me "how are you DOING though, really?" and I say "fine, actually" and the response is always, "well, you look GREAT!". I think it's amusing. I mean I'd say the same thing. What else do you say to someone whose just fought cancer? I do feel my ego has been inflated tremendously though, apparently, my skin is "glowing" and "creamy perfection" and - "oh, what products do you use" and my hair is such a "beautiful color, I can't believe you didn't have it colored" or "it's such a cool texture" and so on. These are just the social norms of small talk but I'll take it!!

Surrealism.

• I often catch a glimpse of myself in a mirror or window and sometimes stop and pause. "Who the hell is that?" I often wonder. I am unrecognizable to myself... Sometimes as Boris and I are getting ready for bed and I'm slathering my body in Aquaphor, I'll turn to him and ask if he can believe I have cancer. He can't. I have cancer. Me neither. I have cancer. I think. I guess the cancer has been removed. We hope. We don't know for sure and won't until I have my scans. So I don't know if I have cancer, am battling cancer, am a survivor? How surreal. 

• We all know I am still struggling with the survivor label but I agree that it is surreal. Like I'm living in a fourth dimension and might wake up from this weird dream sometime.  I'm actually starting to like what I see when I look in the mirror. I don't just see the imperfections, I see battle scars that I have some pride in knowing that I have come out of them stronger. That I now know how strong I can be. Also, I'm kind of really digging the short hair.

The C-Bomb Works.

• I'm shameless. I know. But sometimes a girl's gotta do what a girl's gotta do. If Pizzeria Mozza is booked, I just tell them I'm pregnant with cancer and voila - they're not booked anymore.  If I'm going to go through this shit - I'm going to milk it for all I can. 

• I was less vocal about this EXCEPT when I felt someone was an asshole. I'd use it for shock value to remind people that you never know if the person you cut off in line or are curt with is going through some kind of struggle. One of my high school friends posted this on her facebook and I loved it "The one that angers you controls you -- Don't give away that power!! -- especially the one that does it intentionally".  Karma is a bitch, right? We can certainly hope that those who wage a war on you because of an internal war inside will reap what they sew.

I No Longer Care Who Knows I have Cancer.

• When I was initially diagnosed I only wanted to discuss cancer with a select few. The marines of my life if you will. Now, not so much. If anyone comments on my hair (or sadly, now, my lack thereof) I blurt out that I have cancer or am being treated for cancer. I shock people all the time and really, truly don't care. 

• Now I feel like I am a crusader. I do like sharing my story so that others can be aware. October is breast cancer awareness month. Please perform a self-evaluation or get the women in your life to examine themselves and get screened for anything that feels "unusual".  Even if they are young. Even if they are pregnant. Even if they are breastfeeding!

Flexitarian?

Wonderful time in Vegas. It was some time that was much needed. We got to catch up with each other and reconnect and had a great time with some friends as well. Also got to do yoga one morning, thank you Ellis and Yvette, and saw the Beatles "Love" show.  All you need is love!

After some discussion this weekend I have decided that I want to follow-up on my initial desire to see Dr. Keith Block at the Block Center for Integrative Cancer.  David is supportive of this plan. Dr. Block's the author of "The Life Over Cancer" book that I use as my go-to guide.  The problem is that there are things in his book, mainly the reduction of sugar, dairy and animal products, that I am supposed to be following but haven't been able to entirely. Now, some of you who know me know that I don't really eat a lot of sugar but I still eat fish, poultry (although less and less), and goat cheese. Lately, I've been even worse than that, I've been slipping. And it's a sliding scale. The thing is, once you slip a little it's like opening the damn, it's very hard to get back on track. It was very refreshing to stay at the Wynn property, Steve Wynn is a newly devout Vegan and all of his restaurants (and room service) on his properties have vegetarian, gluten-free and vegan menus. I was in heaven. In the real world though, it's more challenging to eat that way.

I am trying to eat a whole foods and plant based diet but I still have this terrible addiction to sugar and "protein" (in quotes since you don't need to get protein from animals, you can get it through plants as well!)... I finally watch "Forks Over Knives" and it strengthened my desire to be vegan. This is a really difficult thing, particularly in this family. I think the kids would be fine with it and I would be able to be inventive about macaroni and cheese with almond cheese and brown rice pasta but it's the dairy that will be super hard. Abby drinks almond milk and soy products but she loves her cheese. 

We had lunch with another couple who lives in Vegas and she is a vegetarian. She, Mary, started out like me eating no pork, no red meat and only fish and eggs; then it got easier for her to cut out the eggs, then eventually the fish and then the dairy.  She said reading the China Study changed her life.  She had her father read it and he started following some of the dietary restrictions but she called him a "flexitarian" - he can go long bouts of being a vegan then decide to be a pescatarian (fish) then an ovo-lacto-vegetarian (eggs and dairy) and so forth. Her husband doesn't follow it at all though. I think that is the big challenge.  Anyway, I loved the term. I suppose I am currently a flexitarian. 

This week will be about some experimentation to see what I can cut out.  I do the grocery shopping in this house so that mean NO more buying desserts, candy, snacks, dairy, and the like. I think Abby will be fine with it. It's the husband that may protest.  Fingers crossed.  

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.  

Walking Fool

Sorry I haven't posted in a bit. I have been walking, walking, and walking.  Like they said about Forrest Gump being a "running fool" I have become a "walking fool'... I am getting serious about training for this Avon Walk.  Last week I bought my pedometer so I can figure out how much I walk in a normal day just doing errands, chasing after Abby, etc. etc.  That was about 2-3 miles a day.  Then I started walking with David up Westridge first. That is a haul. I love living in our Canyon. It is so darn beautiful. It is about 2.5 miles up to the top of the Westridge Trail Head from our house (that is straight up), I wish the pedometer would include the incline factor but I digress... I started out doing that. The 5 miles then became exploring the random streets in the Upper Westridge Area and then I walked about 6.5 miles one day.  I'm building up each day. I wish it wasn't so darn hot though...makes training tough.

The day I walked 6.5 miles (in addition to my 2 miles of regular walking) was pretty hot by the time I finally got out to walk. When I was almost home I noticed that my left hand was swollen.  Oh that freaked me out big time.  Since the surgery I have been worried about lymphedema. I haven't had any swelling except for the first day of radiation but that went away quickly.  I've only had to deal with "cording" in my arm. They say older, heavier women get lymphedema and younger, more active women get cording. The physical therapist told me before I left for Jackson Hole that I should wear the lymphedema sleeve and glove both while traveling and while doing any rigorous exercise.  Bullshit I said.  That was an old "rule" suggested by the National Lymphedema network.  The new rules are actually now called "guidelines" since they now agree that everyone is different and not everyone will have a reaction to certain situations.

I love my lymphatic drainage massage therapist Lisa. She told me that I should feel free to test out breaking a rule (like jacuzzi's or massages or lifting weights) gradually to see if I have any reaction.  She said the body will give you feedback and then you'll know what you can and can't do. Anyway, there I was in the hot sun up Westridge looking at my swollen hand. After hyperventilating a bit thinking that my arm would start to swell up like an elephant's leg I took a few deep breaths and calmed myself.  I sat on the curb and gathered myself and my thoughts.  Then I wet my finger and squeezed off my wedding ring.  Then I noticed that my other hand was swollen too.  Ahhhhh. It had nothing to do with lymphedema.  It was probably a reaction to the heat.  I'm going to continue training and just be very cautious about pushing my limits. I can't imagine having to wear that sleeve and glove while working out.  Sheesh. That would really dampen my style.

Saturday I went to ballet!  What a glorious morning.  I am still terrible at it but I love it. It is the most difficult work out. If you do ballet CORRECTLY it is the most challenging activity you can do. I actually did well when we came to center to dance this time. Holy cow. I'm improving every day.

Sunday I decided to do a longer walk.  I walked 6 miles and then a ton more at the farmer's market and at the beach with Abby for a total of 9.5 miles yesterday.  I had to take a NAP.  I was exhausted.  Part of it I'm sure are the 5-FU chemo pills.  I just don't care.  I want to do this. I want to push myself. There are other benefits of the push to exercise as well...I am building my endurance and energy to be able to be with the kids. I don't need to take naps (unless I've done a ton of walking or exercise) and the I'm getting back to my fighting weight and shape.  The LBs are just melting off.

In other news. I have some BIG news.  My walker coordinator at Avon was inspired by my story and shared it with her team. I have been asked to be a speaker at the walk!! I am the ONLY survivor speaking at the Closing ceremonies.  There are only FIVE speakers total...this is HUGE. What an unbelievable honor.  I had my interview with the Event Producer last week and he is going to script my speech for me. How fancy nancy.  Then I got a call today from the Avon Foundation PR team and they wanted to know if I would feel comfortable sharing my story with reporters and TV crews prior to and at the walk.  Of course!!  I am not ashamed in any way to have this disease. I am not ashamed to share the details of this process and no one else diagnosed with cancer should be either.

I am very, very excited.  We'll rent a house on Carpenteria state beach and bring the whole family up.  I want to take the train with Abby.  Oh how fun and special this will be!!

Thank you all for your support!
Lots of love,
Jess

Fill in the blanks...

A fun word game for mothers of toddlers.  These are phrases I only THINK in my head but do not dare say out loud for fear I get arrested or called about to child protective services...

Thought: "It stinks like ____ in this ____ room.  Did you _____ in your ____ diaper or what??!?"
Actually:  "Ohhh, do you have poo poo in your diaper sweetie? Can mommy change it?"

Thought: "No I will not ____ rock you one more ____ second. Now go the _____ to sleep already!"
Actually: "Five more minutes of rocking baby, and THAT'S it..."

Thought: "Did you just _____ pinch my leg? You little _____, you just pinched my ______ leg!"
Actually: "Honey, what's the rule about our hands? They are for clapping and saying "hi", right?"

Thought: "OMG, I want to vomit in my mouth, this is the biggest, most disgusting, rancid, foul, horrific _____ diarrhea diaper I have ever changed in my life!"
Actually: "Oh no, let's put on some extra desitin, your poo poo is giving you a rash!"

Thought: "When will this day ever _____ end?! It's only 2:30..."
Actually: "Okay, who wants to watch a movie and have popcorn while mommy rests?"

Thought: "Is she refusing the take her ____ nap? Oh ___! What the ____ am I going to do now?!?"
Actually: "Sweetie, we'll get to go to the park after your nap.  If you don't take one we can't go."

In other, less hysterical, news, I got the Zomeda infusion Friday (ugh, HATED it since I had to have an IV and sit there in the Chemo chair just like in the "old" days as a full-on cancer patient except this time I was ALONE waiting for the time to pass and trying desperately not to go to those dark thoughts I used to have sitting in those chairs not too long ago).  Well, the drug knocked me on my ____.  I had flu like shivering and bone sensitivity for two days straight and all I could do was sleep (this meant a boring weekend).  Today I'm feeling a bit better but it was really annoying.  Lupron (the estrogen suppressor) causes bone loss and eventually osteoperosis. So to counteract that I got a shot of Zomeda which helps maintain bone density.  That makes my drugs total 1) Lupron; 2) Xeloda (low-dose Chemo pills of 5-FU); 3) Lexapro; 4) Trazedone and now 5) Zomeda (once every six months while on Lupron). Plus in SIX months when I am done with the Xeloda (oh yeah, found that out Friday and I am sincerely depressed about the length but what can I do if the pills can help save my life?) I have to go on Tamoxifen.

I am seriously thinking about whether or not to just go ahead and have a full hysterectomy.  NOT TAKING THAT LIGHTLY. We already know that Dr. McAndrew basically said no more pregnancies for me. It is so incredibly difficult when someone tells you NO even if you had come to the conclusion already on your own.  Taking away an option is never fun unless you can rule it out on your own. Now you see, if I do the procedure then I am permanently in menopause BUT I can't do hormone replacement therapy.  I'll write more on this another time when my teeth don't hurt from this _____ stupid Zomeda infusion.  Oh and my ____ back is killing me. I don't know if that is from sleeping wrong the whole weekend on my bed or from the ____ infusion.  Just _____ lovely.

JLTD Baby...

Two days ago while sitting in the jacuzzi at the Amangani (am now currently OBSESSED with any and all things Aman Resort related) a kid was talking to another kid (I say that loosely because he was probably early twenties but since I am now MID-thirties I can rightfully say that) about taking a break from his summer job and as he gestured out towards the majestic view said "JLTD Baby...JLTD". As in "Just Living The Dream"...and I had to bite my lip to keep from bellowing with laughter.  But I have to agree with the kid. I was definitely living the dream on our Jackson Hole vacation.

What a fabulous trip we had. Just in passing, we approached the weekend with a "why not" and "when in Rome" attitude.  We stayed at the most amazing resort in the most amazing town.  I feel completely disgusted with myself for being a spoiled brat when I say the following statement...we went to lunch at the Four Seasons in Teton Village to check out the competition and sped away as fast as we could afterwards to get back to the Amangani.  Best service we have ever experienced.  I cannot wait to go to the Amangiri in the fall.  (I'm sure David is cringing at that statement since he saw the bill at check out but...even he was blown away by the whole experience).

As part of our "why not" attitude we did several long hikes to see the sights and the views, 90 minute massages in the spa (If you ever go you must request "Dayva" - best massage ever and I'm not just saying "best" like I have turret's or something), relaxed in the jacuzzi outside with a view overlooking the Grand Tetons each evening with a glass of wine, ferried across Jenny Lake for a hike, rode horses each day, visited Kelly Warm Springs and the Gros Ventre "Landslide" (you could skip that), and had wonderful food the whole time.  The restaurant at the Amangani was so good that we cancelled our reservation in town at Il Villagio Osteria to dine at the resort another night (they had a vegetarian menu that was unbelievable). As far as restaurants go we did enjoy "The Kitchen" too!  So all that being said, we were living the dream and THEN the Weekend Wall Street Journal had an article on Jackson Hole and then we just HAD to add a few more to-do's on our list.  The next day we paraglided in the morning and then white water rafted down the Snake River.  UNBELIEVABLE!!!

Here is a quick flip video that David shot of me as I did some "tricks" in the glider. The funniest part is David's commentary. David, who I am very proud of for going at all since he gets motion sickness, saw what I was doing and then decided he should try it too.  He did one rocking motion though and then decided to just slowly glide back down instead.  He says "Holy crap, what is she doing...look at that...WOW." Anyway, I loved it. But I'm kind of a dare devil.  Especially with my new "why not" attitude!  You only live once my friends so make it work and make it count.  Do what you love and try anything once.

After paragliding David couldn't eat.  I scarfed down some breakfast then we headed over to do our white water rafting expedition.  We were in an "8 man boat" with just the instructor and three of us. That means way more work for the three of us.  Our guide Josh was a lot of fun...he kept telling us all the things we had to do if we fell in or the boat turned over, etc. etc. in a whole list of things that could potentially go wrong.  Long story short, we were doing great then we crossed the "Big Kahuna" rapid and he almost fell out of the boat. Here's the frames in order so you can see for yourself.  We were busy paddling so we didn't even notice that he was tossed up out of his seat and slammed face first into the boat.  Hilarious.  OMG. He barely got himself and his oars back into position before we crossed the second largest rapid.  Grilled Cheesus that was close.  After all that I "rode the bull" where I sat at the tip of the boat, held onto a rope and "rode" the rapids and waves like one would a bull.  The woman in the other party fell backward into the boat after two waves.  I'll toot my own horn by saying I rode it for about seven or eight full waves. I am now a professional thrill seeker - NOT!!!

We had such an awesome time creating new memories and reconnecting with each other.  We both couldn't wait to get back and see the kids though.  Home sweet home.

In other news, I wore my lymphedema sleeve and glove on the flight and NO swelling to report after traveling.  I was nervous it would react. I was also nervous that it would react to so much strenuous activity but my arm is doing great.  Once again, I would like to honor my body and its miraculous strength and vigor.  I am tired and sore but I love that feeling.  To know that I was able to do such active things after such a crazy ordeal makes me very happy and very hopeful for the future.  Guess I'll be able to ski this season...