Home Sweeeeeeeet Home

We are HOME! We (mostly Jason) packed up and moved everything back (and boy was it a lot of stuff after 5 weeks at my mom and Rich's house). It is absolutely wonderful to be home. The girls couldn't have been happier. Talia was a dream child. We came home to a lovely Mediterranean platter and home grown tomatoes on our back porch (thank you Laura, Mac, Rye and Adrian). Our neighbors across the street delivered some ice cream goodies and we celebrated with a lovely Shabbat dinner complete with a homemade and delicious challah from Jodi, one of Talia's teachers. The evening really couldn't have been more perfect. And the sunset tonight was absolutely divine.

There is a TON of unpacking, purging (lots and lots), organizing, etc. to do, but it doesn't all have to get done right away. I have plenty of time to tackle it all.

A quick but oh so meaningful shout out to Mom and Richard. Your house was a wonderful place to heal. Thank you for the meals, laundry, tissue, walks, errands, and most of all the 5,000 trips to the grocery store to feed my growing family. THANK YOU THANK YOU!

I am looking forward to a weekend around the house, feeling my usual self. I've got 13 days until my next treatment and I have plans to really maximize it. I met with an acupuncturist today who specializes in breast cancer/chemo patients and spent two hours with her. She was wonderful and will work with me over the course of my treatment (usually the day before chemo and then during my nadir which is the term used to refer to the point when the immune system is at it's lowest - 7-12 days post chemo). She is approved by Kaiser so it's no additional cost to me, a bonus!

I am feeling pretty great today. Can't wait to climb into MY bed tonight and wake up in the morning to celebrate all over again.

What a difference a day makes

This morning I woke up and for the first time since Thursday I felt lucid, energized and HAPPY! I got a pedicure, had lunch with my friend and spent a nice afternoon with the girls. I did spend some time resting in bed but I did not take a nap ONCE! I'm tired now, trust me, but it feels great to have had a normal day today. I cooked some dinner, did bath and bedtime and feel very accomplished. It's an amazing feeling to see myself on the other side of a treatment (even if I have a few setbacks in the next couple of days). I finally feel like I can make some plans and think beyond tomorrow.

It's pretty powerful how an experience like this can change what you appreciate it. Today I was just thankful for the ability to eat with my girls, do some dishes, and be social. A month ago I would have taken those simple things for granted and never even really acknowledged their significance.

Lots of Zzzzzzs

I haven't posted in a couple of days because really, nothing has happened. I have literally been sleeping for 3 days straight. The exhaustion is still pretty intense. I am preserving all my energy for dinner and bedtime so I can be with the girls. Today I was able to walk 4 blocks, with a break on some steps in between. It's really overwhelming how much my life has come to a grinding halt. Emotionally it sucks. But I can't imagine going through this without all my family and friends to help and support me.

P.S. Things are looking a little up - I was able to do bath and bedtime for both girls tonight with just a little help and it made me feel so great. Hooray for the teeniest bit of energy!

Sheer and Utter Exhaustion

Since my post Friday night, the exhaustion has hit me with all it's might. I have barely been out of bed. I am eating when I feel like it, and only in small quantities. The nausea is under control but I cannot believe the total exhaustion. I miss spending time with my family, that is definitely the hardest part so far. But I have to listen to my body and allow myself the time to heal from the drugs.

Today was supposed to be full of celebrations, a welcome home to my cousin Michael, Tessa's 18th birthday party and Rachel's 7th. It's now 3pm and I'm still in by pjs and my goal for the day is just to take a shower. Priorities change, but my job for now is to simply heal and rest and make my body my #1 priority.

Talia's camping night at Fairyland seemed to be a big success. Minna didn't sleep much last night, but thankfully my mom took care of her so I could sleep the whole night through. Thank goodness for my village.

This round of treatment and all of it's effects, will surely help me prepare better for my next one, on September 10. I won't commit to any plans that weekend and will be sure the girls have plenty of people around to entertain them so I can sleep the AC off. It's really going to be my life for a while.

That's all I've got in me for today.... even my hands are tired from writing this.

The Power of Healing

I just returned from a restorative yoga class and oh man did it feel good. From the moment the instructor first introduced herself and listened to my "story" until I got into the car to come home I felt in an intense feeling of calm. Throughout the class, the teacher would come over and rub my back and check on me. I felt so cared for. Because I've been so sore and tender from the surgery I have had barely any physical contact for 4 weeks and tonight I realized just how much I miss it!

I had Jason by my side through the class and I kept looking over at him in awe of this amazing partner I have to go through this with. I am so grateful for his presence and support.

I feel so peaceful and calm at the moment. I plan on returning to this class as often as my body and soul allow. I also have an appointment scheduled next week for a massage, facial and acupuncture. Should be a soothing week.

Addendum to "One Down"

So pretty much as soon as I published yesterday's post I started feeling really crappy. My nausea was really bad, even with the 5 anti-nausea meds they gave me. I took another around 3:30 when I woke up from a nap and it just made me feel like crap. The rest of the evening was pretty bad, ate a few bites of homemade chicken soup (thanks Sue!) and got in bed. Talia kept coming in to check on me. "Mommy why aren't you eating?" "Because the chemo makes my stomach upset" and she's munching on a tortelini and bites a piece off of it to make the letter "C" and says "C" is for Cancer. I manage to read her one bedtime story in my bed before she goes upstairs with Jason and when I ask her for a goodnight kiss she says "I already gave you one" and then proceeds to kiss my chest and I ask her what that was for and she says "To make your boobies feel better". God do I love that girl!

I barely slept last night - I think the steroid kept me up (they warned me about that). I will try and get some Ambien. But this morning I took a 2 1/2 hour nap which felt divine. Now I've eaten lunch and I'm off for a brief walk to run an errand. I am looking forward to a low key weekend.

I have become addicted to my snuggie (as has Jason). So thanks MoFo team for yet another super thoughtful present... my pile of loot is HUGE!

One Down

Today started out like any other day. Got up, got the kids out of bed, made breakfast for everyone and dropped Talia off at school. On the way out, two moms stopped to hug me and share some words of encouragement. And then to Kaiser Oakland for first infusion.

It wasn't nearly as bad as I thought. The nurses were amazing. I am already trying to figure out what kind of cookies to bake for them! First I was given 5 pills (looked kind of like an easter egg basket with all the pretty pastel colors). Zofran, Decadron and Emend, all for anti-nausea (I also have a bag of these same drugs to have with me at home). Then they started the first drug, Adriamycin. It's bright red and in two syringes, so the nurse sits there and pushes it into my IV, takes about 10 minutes. Cherie, the nurse, was great. We chatted throughout. Then onto the Cytoxin. One IV bag full, took about an hour to get that in me. They took out my IV and sent me on my merry way. We talked to a few other patients, we were sitting in a room with 4 other chairs. One woman looked at me and said "Someone who needs to be carded to buy alcohol shouldn't be here getting chemo" and I said I couldn't agree more! I have the option of a private room but the natural light by the window was really nice. I've got a little TV I could watch but it was hard to concentrate on anything but my iphone. At one point (all you iphone junkies will appreciate this) I was reading an article on my phone and I looked over to where my phone had been sitting on the table and I didn't see it there and I started panicking that it was gone! Only to realize it was in my hand. Is this what chemo brain will bring?

So I'm home now, just ate my lunch and I'm gonna get some rest. I feel exhausted but mostly from the let down of getting through this HUGE day. We'll see what happens next.

The New Me

I debated taking a picture of my new boobs but that's not going to make the cut. Sorry to disappoint.

The "fill" was interesting. Kind of like inflating a balloon. My boobs do look nice but they don't feel like real boobs. I'll get used to it.

Now for the hair. Very emotional. I expected it to be hard, but it was pretty intense watching and feeling her cut the first chunk of hair off my head. You can see the 7 ponytails she cut off to donate to Locks of Love. And then the new me. Jen (my stylist) is amazing, I've been having her cut my hair for gosh, 15 years?! She did my makeup after and was just fantastic. Anyone in need of a new hair stylist, Jen is your woman!

It was an intense day, I'm wrecked. But wanted to share this step with all of you. Thanks for all the continued support.

Thank goodness for my village

Seriously, what would I do without all of you? I would not eat such delicious food, read such wonderful books and magazines. I wouldn't be able to stay as warm and cozy (thanks to work for the most recent bag of goodies, including two snuggly blankets - I know there are so many of you out there that wanted to order them from the infomercial and were too afraid!). I wouldn't be able to take as many sanity breaks without all the babysitting from Mom, Rich, Sue, Jeff and Tessa. Thanks to my dad for paying such close attention to the medical details. And to my sister who has sent so many wonderful gifts to help me through. All the snuggly sleepwear has been wonderful too! I would NEVER be so sane without the endless love and support and compassion from Jason, really this is what marriage is all about.

Tomorrow brings my first boob fill (kind of like getting your acrylic nails filled I guess?) and yes, I'm getting my hair cut really short to transition into my new look. I'll post a picture to Facebook and here so you all can experience the transition with me. I feel pretty optimistic about things at the moment. I spoke with three breast cancer buddies today. Each has her own very unique experience but I was able to absorb some great energy from each of them and I feel so empowered to approach the beginning of chemo with a strong will and a determination I didn't know I had in me. I will NOT walk into the hospital terrified of experiencing all the side effects. One of my new friends told me today, chemo is 6 months. She pointed out that I was pregnant for 10 months x 2 and this is only 6 months so I can totally handle it. It was such a great thing to point out and I really do think it's helping me mentally.

Time to put Talia to bed now, more later. Promise!

Chemo "Class"

Today was Chemo Class. Although, I'd hardly call it chemo class. It was rather disappointing. The "teacher" literally stood in front of a power point presentation and recited the words. We really didn't learn anything new. We were told of about 6 slides worth of possible side effects, but the reality is I likely won't be impacted by many of them (this is me being very optimistic) or for those that I do suffer from, thank god for lots of drugs to counteract them. We sat amongst 6 other patients in this class, most appearing to be much more sick than me. Jason and I walked out feeling totally drained and depressed but after the initial reaction wore off, we were both left feeling very optimistic. I am so young and healthy, I have so much going for me. I feel more at peace by the whole thing right now, and as Josh Kemp said I'm going to open a big ole can of wup'ass on this nasty disease and kill it!

This next week will bring:

• Massage by my friend Anna (yay!)
• My first tissue expansion so I can finally see what my new boobs will start to look like
• The first infusion
  
• A family photo shoot to capture this moment in time

I am feeling quite good at the moment...

Save the Date!

My first chemo has been scheduled: Thursday August 20 at 10am. This Thursday I have my "chemo class" where I will learn all the ins and outs of chemo. Should be interesting!

Please, everyone who wants to join, mark your calendars. On Saturday, August 21, 2010, I will be throwing a party to celebrate being cancer free. Details will follow, over the course of my treatment. What better way to spend my time at my infusions than planning the party of my life!

Ups and Downs

The last couple of days have been more emotionally challenging for me. I guess it's all just really starting to sink in. The start of chemo is approaching (exact date next week still TBD, more on that in a post later this week). The fact that I've spent hours researching wigs/scarves/hats, etc. means the hair loss is really going to happen. I am finding myself more emotionally fragile and VERY moody. It would be nice if I could put PMS on hold while I'm dealing with all this other crap, but of course that's not possible. I realize that in 6-8 months I won't have to deal with periods anymore, and I should really be grateful that I have them right now, but sorry - I don't see a silver lining in cramps and mood swings.

I have started reaching out to my new "breast cancer buddies" and it's helpful and overwhelming and so confusing all at the same time. I hate that I can't go an hour without thinking about this f#!#$% disease. I hate that if I get woken up in the middle of the night by any small thing, it takes me an hour to relax enough to go back to sleep because my mind just immediately jumps to all this stuff.

Today I had my MUGA test - draw blood, mix in a radioactive dye and inject it back into me and then scan my heart for 10 minutes to make sure it's functioning properly. A very benign test but I felt so lonely and sad being there. This is just what life is going to be like - I am getting very familiar with the parking lots at Kaiser, starting to recognize the faces of people in the hospital, etc.

I had a relatively normal weekend this weekend. Jason and I were able to go on a lovely date Friday night and ate at a fabulous middle eastern restaurant Zatar in Berkeley and then went to see 500 Days of Summer (totally worth seeing!). Yesterday I went to see Julie & Julia (also great!). I'm trying to carve out time for myself, but it's challenging sometimes. And Talia, god love her, is SOOOOOOOOOO clingy and needy and whiny right now. I just don't have the patience for her sometimes. I love her, but I don't always like her.

We decided we are going to stay at my mom and Rich's for another 3 weeks. I want to get through one round of chemo and see how bad it is (even though the effects could be different the second time around) before I go home. It's been so hard planning things for the next few weeks/months because I just don't know how I will feel. I hate that!

I know this is a pretty down post, I just feel crappy today. Hopefully tomorrow will be better, but if it's not, oh well!

"What the Heck?!"

So I've been dreading the day that Talia sees my "new breasts" since this all happened. What will I say? How will she react? Visions of her running out of the room screaming have passed through my head.

So today we were out on the front steps working on an art project with Tessa (my wonderful cousin) and I said I was going to take a shower. About 15 minutes later Talia comes into the bathroom and wants to hang out. I'm in a glass shower. And I start panicking. Shit! It's too soon, the incisions look too gruesome still. What am I going to say!? She asks me to wipe away the water so she can see me so I slyly wipe away the water up at my eyes. Immediately she says "No mommy, I want to see your body!". Damn, now what?! So with sweaty palms and my heart pounding I wipe away more water so she can get a full visual. She kind of looks me up and down and then says "Mommy, um, where are your nipples?" like it's the most normal question in the world. I say "Well in the operation, the doctors had to remove my nipples because of the breast cancer, but don't worry, I'm gonna get new ones soon." She gives me the oddest look and says "New nipples, what the heck!". It was priceless. Then I get out of the shower and start to dry off and I kneel down on the ground and let her kind of inspect me. She points to each little wound and asks if it hurts and each time I answer honestly. And then she flitted out of the room, off to her next task. What a relief, something I'd been dreading for the last few weeks is finally over, another thing I can check off my list.

The Scoop

So all this talk about "Thursday" and "the appointment". Well it happened this morning. And here is the scoop:

Considering the fact that I have breast cancer, this is the best scenario possible. I am ER (estrogen receptor) and PR (progesterone receptor) positive and HER2NU negative, all very good things. It means my cells are more able to absorb the treatment and I have a more likely chance of responding favorably. (I hope I got that right all you medical people reading this!)

Next Monday I need a MUGA test (Multiple Gated Acquisition Scan). This is just to check that my heart is functioning properly before chemo begins. Then I'll go on Tuesday for a second opinion with a breast oncologist in San Francisco and if all goes well there (if he concurs with everything Dr. Thomas told me this morning) then I'll have "Chemo Class" later in the week and begin my treatment the following week (specific day to be determined).

My 6 month regimen will be as follows:

3 months of "AC" which is Adriamycin and Cytoxin combined. I'll go every 3 weeks for 3 months. The treatment or infusion will take about 3-4 hours each time. Once the AC is finished, I'll start another regimen of Taxol which will be once a week for 3 months. It's expected that the few days after each infusion I will be tired and nauseated, although they give you anti-nausea meds prophylactically (thank goodness). My body will start to heal and just when I'm feeling myself again, I'll go for my next treatment.

Let's cut to the chase here, when will my hair fall out? 2-3 weeks after my first cycle (so right around Labor Day). It's not a matter of if, just when. And we're talking head, eyebrows and eyelashes (most likely), legs, etc. (you get the picture). This, I'll admit, is the scariest part for me. I can deal with the nausea and loss of apetite (hell my ass could stand to lose a few pounds!) but I am so terrified of looking like a monster and being stared at. The idea of all my friends and family seeing me for the first time after I shave my head is scary, but I know I will get used to it and find a new sense of self confidence. I do believe that.

Once my chemo is over I will most likely have my ovaries removed (or possibly a total hysterectomy). I'll meet with a GYN oncologist and discuss which is a better course of action. Either way, it looks like at the end of this I will be in menopause. Crazy to think that 8 months ago I was on a beach in Belize pumping 3x a day to keep my milk supply up for Minna and now I'm faced with this.

The good news is, I am starting to find a lot of silver linings in all of this: (in no particular order)

1. Free, new, perky boobs
2. lots of time with my girls and Jason (and my whole family)
3. time to exercise in between treatment cycles
4. no more periods! (after I'm done with all the extreme mood swings and hot flashes and who knows what else)
5. A very fresh perspective on life and a new level of appreciation for everything I have
6. An excuse to wear some cool wigs and see what it's like to be a blond or redhead

It's a helluva lot to take in, my mind feels so overloaded right now. But I'm grateful for the advancements in cancer treatment and for everything I have going in my favor. And mostly I'm grateful for all the people who have come through so amazingly and have been and are ready to step up and help out. I am blessed!

Some Interesting Ads

My mom found these old postcards that mimic ad campaigns for Obsession perfume and Victoria's Secret. I think they are powerful and worth sharing...

Risk Factors

Yesterday was a trip to the business office at Kaiser to finish filing my disability paperwork and then to an hour+ appointment with Genetics. I can't believe the # of appointments that have suddenly filled my days, but I better get used to it, it's gonna be like this for a while...

The genetics counselor, Nicole, is terrific. Perfect amount of science and statistic, mixed with compassion and sympathy for what I'm facing. Basically, I now have a 27% chance (over the course of my lifetime) of getting ovarian cancer, a much more difficult cancer to detect early and treat once diagnosed. There is a blood test I have started taking, but it's known to result in lots of false positives. And there is a pelvic ultrasound, which I am in the process of scheduling so I have a baseline. The decision (one of many) I am faced with in terms of this risk factor is whether to have an oophrectomy (remove my ovaries) and significantly reduce my risk of ovarian cancer. Of course removing my ovaries at 35 means I will go into early menopause. If I was 45, this would be less of an issue. And yes, I'm done having kids so that's not it. I just picture myself post oophrectomy with hot flashes, mood swings, and a beard, and I really hate that image. I know that chemo will likely also bring on early menopause so it's a matter of collecting more information, and in the long run, doing what I can to protect my health for the rest of my life.

Other things we learned yesterday - even though I just had a double mastectomy, I STILL have a small chance of getting breast cancer again! Since there are still some breast cells in my body this is a possibility, unlikely, but possible. I also have an increased chance (by 2%) of getting melanoma, stomach and pancreatic cancer. I mean if I really think about it, there are so many possibilities and I really refuse to turn this experience into a way to scare the shit out of myself and become a paranoid hypochondriac for the rest of my life.

As far as Talia and Minna are concerned, they have a 50% chance of having the breast cancer gene. Once they are both 18, they can decide if they want to be tested. I am hopeful (as are the geneticists we met with) that by the time they are old enough to be tested, there will be so much advancement in medical science and cancer research that this will all be irrelevant. Sometime in the future, (when we have more time!) Jason will collect his family history of cancer and that will help us determine if their risk is higher. Since we are both Ashkenazi Jews, it's an important exercise to go through.

And last, and for now what I find most concerning, is the idea that my medical record is now marred. Should I need to apply for health insurance elsewhere, I could be really screwed. The GINA act was passed in May (Genetic Information Non-Discrimination Act) which supposedly protects patients from being discriminated against based on their genetic disposition, but there are many loopholes. And really what makes this more difficult for me is that I have breast cancer and insurance companies won't like that. Even though I've significantly reduced my chances of breast cancer again (and eventually ovarian cancer too) it's still a disadvantage. I've got research to do on this as well (and thanks Ali for offering to help with that) because I understand there are ways to avoid this issue. Come on Obama!

I continue to progress with my recovery. I'm getting more active and helping out with the girls more but I'm noticing that by their bedtime I am sore, uncomfortable and exhausted. I've got to learn to pace myself!

On to Thursday...

Clean and Clear

So the unveiling went a lot better than I expected it would. I honestly thought I would break down in tears at the sight of the new me. Yes it was scary and a little gruesome (if I am allowed to describe myself in this way) but I took a good long look and kept reassuring myself that it's a work in progress. And again, no matter what, this has saved my life and that makes it all worth it.

My mobility is really starting to come back. I am walking more, going out in public more, although crowds make me nervous because the idea of someone bumping into me makes me break out into a sweat. I'm still really sore and tender. I made breakfast for everyone this morning and it felt great to be more independent. I still can't lift Minna which is the most difficult limitation and the one that will take the longest to get past.

Tomorrow is the visit to the genetics counselor where I will learn more about the implications of being BRCA positive. What are my chances of ovarian cancer now? What does this mean for my girls? The biggest milestone this week is Thursday, my first oncology appointment. There I will learn what my regimen will be, the cocktail, the frequency, duration and expected side effects. I imagine that will be really intense and overwhelming and another big hurdle to fly over.

But fly I will....

Freedom!

In my previous post I mentioned that I only had one drain removed. Well when we got home from dinner on Friday night I started having severe pain in the drain that was still in (on my left side). It continued to get worse until Saturday morning when I couldn't deal with the discomfort. So we met the on call surgeon at the hospital and he removed it for me. I felt better immediately! It was an exhausting 12 hours with little sleep but I came home and took a nice long nap and felt like a new person when I woke up.

Jason and the girls and I walked up the street to dinner which was a big outing for me but it went well. The girls seemed really happy to have us all to themselves!

It's now 5:15 am and I've been up for an hour in bed. Insomnia is not something I usually deal with and it's bizarre that I can't sleep. I think that what's bothering me is the idea that my drains are out and I'm now officially allowed to take a shower (it's been 9 days, can you imagine!?!?!). But I've been terrified to look at myself for the first time. As I laid in bed trying to go back to sleep I finally made the mental switch and now I feel ready to face the mirror. It will be intense and probably trigger a lot of emotions, but I need to move forward and embrace the new me. After all, this surgery has saved my life!

I have also started reaching out to a few "breast cancer buddies" thanks to many of my friends. It's quite unbelievable just how many women my age have been faced with this same situation. Talking with them will be a tremendous help. Knowing I'm not alone in this journey makes a huge difference.