Slowly but Surely

Hi Team,

I don't think I realized coming out of chemo and surgery how hard it would be to transition into a "normal" life again. To get up, go to work, care about things other than my health, and start to get used to my new body and world-view. It's not physically hard - I have started going back to the gym, even hired a trainer to help get me back in shape - and am finally getting my energy levels back. I went to a spin class this week and for the first time since last year, got a good hard hour of intense cardio where I was dripping sweat and it felt fantastic. Being back in life is really emotionally exhausting and hard.

I always look at my life in calendar years since my birthday is on New Years Eve - the calendar year of 2010 is the year I was 28. During New Year's last year, my ex-boyfriend's family had a big new years and birthday-party in Mexico with us and if you had asked me then what I'd be doing this year I would have told you two things: Going on my trip to Vietnam, Cambodia and Thailand, then maybe moving down to Southern California to be with Anthony and start our life together. That was my plan, although I know it probably would have taken a while. I feel like everything I knew and thought, any sense of control over my life, got pulled out from under me. I went on my (amazing!) trip to SE Asia, but when I got back, I was thrown into a whirlwind of the shock of diagnosis and survival mode. Apparently I am great at performing under pressure - I survived and managed to make pretty good decisions through my treatment, with a lot of good help and support. But now things in my life are quiet again, and I feel like I'm standing on a battlefield with the ruins of my plans and life strewn around me, I'm still alive, but my relationship, my body, my plan for what to do next, was blown to shreds by my fight with cancer. I don't have to fight anymore, but it feels just as chatoic and totally out of my control.

I am not in the before cancer stage of my life, but I'm not in my after cancer stage either. I don't really know what my exact role at work is going to end up being (but thank God for having a job and health insurance), my wonderful stable relationship was apparently not as stable as I thought and is now gone, I am trying to get used to my new body but even that is still a work in progress (reconstruction still in progress) and I still haven't gotten my period back, so who knows if I'll ever be able to have kids or not - just so much still unknown.

I feel like I'm standing here on the battlefield, quiet and peaceful now looking at all the ruins and totally lost as to what to do next. And I have this looming feeling thinking about what I want to accomplish when I turn 29 - calender year of 2011 - I have a hard time even thinking about it. First, it seems like way too much work to pick up all the peices and start fresh. I don't have that much emotional energy. I'm tired. And, when I try to get up some energy to plan something or think about what I want to do, I have this ever-looming sensation of "YOU NEVER KNOW." Hard to think about what to do next when you have a sense of total lack of control over your life.

So anyway, I've been spending a lot of time at the gym lately, mostly because I know what to do there, I have a little bit of control over my life and body when I'm exercising, and it helps me feel positive. I'm also looking forward to a wonderful 2 and a half weeks home in Kona for Christmas. This will be the first time in a long time to be home and see my parents and one of us is not sick. In the last two years we've had my dad's trip to the emergency room to get a stint put in the artery leading to his heart (SF 2008), then his lung cancer diagnosis (laster in Kona 2008), his surgery and chemo (Nov '08-Mar '09), then my diagnosis in April of '10... visits with the family over the last years have been hard and traumatic. I'm really looking forward to a trip home that is easier and happy/more peaceful (but you never know).

I hope everyone's holiday season is happy and peaceful. More updates soon.

Love,
Amy

Happy Thanksgiving

Hi Team,

I've started thinking about Thanksgiving already and usually when I think Thanksgiving, I think turkey, stuffing, cranberry sauce and lots of pie. Oh and football, and feeling so tired I go to bed at 8pm. But this year I feel compelled to take a minute out of my crazy life and not think about food or how many video games we're going to sell at work for a minute and actually be thankful.

I have a hard time putting into words what I am thankful for because it seems so trite and insignificant compared to how intensely I feel. I guess it can be summed up though. I am so grateful to be alive, to have people in my life who love and support me (yes that's you), be able to worry about insignificant stuff at work (ie. worrying about how many video games we're going to sell rather than worrying about whether I should cut off both boobs or just the cancerous one), and not have to struggle every day to get by. I wake up in the morning now and I am not in pain, I have a bed to sleep in, a job to make a living, a pretty fun work environment, a wonderful network of friends and family that loves me and supports me in any and every way possible despite great distance. I totalled up only part of my healthcare costs (the chemo treatment and drugs, blood work, etc, nevermind surgeries or hospitalizations) and just that part would have been more than $380k without health insurance. I am incredibly grateful for my good doctors and health insurance to be able to afford the treatment I got. I don't know how I got to be so lucky.

There is a lot more I want in life - I want to travel the world and see more new cultures and beautiful places. This helps me be reminded that there is more to life than just the little wheel I run in every day, and that in the grand scheme of things, the little stuff just doesn't matter. I want to have a family and a supportive man in my life. I have to just have faith that with some trial and error, as long as I keep learning from my experiences, this will happen and the right person will come along. And if they don't, I will still be able to find happiness. I am very fortunate for my job, but I want to be compensated for something I truely feel passionate about. But I have to be patient, learning from the job I have and making sure that I take opportunities as they come up and follow my intuition.

Anyone else want to chime in with what they are thankful for this year?

Best,
Amy

A New Normal

Hi Team,

I haven't posted for a while because - great news - there really hasn't been any news! I keep saying to my friends that I just want my life to be boring for a while. I have had too much drama, too many hard times this year, I just want to laugh, enjoy myself, and protect myself from any more negativity at least until next year. Of course nobody ever wishes hard times on themselves, but I have reached my cap for this year, so it's official - for the rest of the year my life is going to be boring, drama-free and happy.

In that vein, for the last two weeks, my life has pretty much consisted of waking up around 7am for work, having a cup of coffee and a shower, some oatmeal or cereal - going to work around 8:30 until around 5:30 (and getting out of work always by 6pm at the latest), then either coming home and watching a few hours of tv or going to the gym or going to the therapist, and going to sleep. Rinse and repeat. It's been tiring even with that little routine since going back to work has taken a lot of energy - but it's been wonderful. It has been a lot more alone time than I'm used to, but I've realized that more alone time doesn't mean that my friends aren't there for me just as much as they always have been. It has been a concerted effort to make sure I manage my energy, and don't over-plan my life. I'm sure I'll go back to a fairly busy schedule, but for now it's been perfect.

That said, I did make a quick trip down to LA for this past weekend to visit with my family friend Polly and see all the Orange County/LA friends whom I haven't seen is ages. Way too long! They've had beautiful babies and exciting stories and they showed me so much love and welcoming that I was once again overwhelmed with a feeling of joy and gratitude for my life and the people in my life. It makes me well up with tears just thinking about it again. I truly am very fortunate in so many respects. Here are a few pics of my adventures this weekend, to share with you all. Pic to the right/above is at the peak of our hike in Runyon Canyon, above LA and in the distance, Century city. It was a really beautiful day. Below, Polly and me trying on sunglasses on the Universal Citywalk, and a few pics from brunch at my friend Sarah's house.

I have been fairly public with my journey and what I've been going through but for the first time at work this week, someone whom I had worked with but hadn't seen for a while caught me in the elevator and said "Oh you cut your hair! It looks so good but I almost didn't recognize you! When did you do that?"

In my mind: "Oh you didn't hear I had cancer? Almost the whole company knows."

One more time in my mind: "Oh it fell out with my chemo but Thanks anyway"

Last time with my internal monologue: "I know, I hardly recognize me on the inside too after what I've been through

I finally just landed on saying "Thank you, it was a few months ago" and leaving it at that. It was a 30 second elevator ride and I really didn't need to ruin his day. We can save that story for another time if he really wants to know. I did feel wonderful though that my hair is now at a place where people don't automatically assume I'm sick.

Otherwise on the health front I've been doing well aside from just being tired a lot. I still get Herceptin as an IV treatment every 3 weeks (until April), I get more saline in my tissue expanders every 3-4 weeks (until about next April), I am going to therapy, have to get a Muga-scan to measure my heart function every 3 months and am on tamoxifen (which blocks estrogen) for the next 5 years. So although everyone assumes I'm "better," to me it still feels like a lot. And it will for a while.

I've also noticed that now that my life is more settled, and my body and mind are finally relaxing from being in survival mode, more of the emotional trauma has started to come out. Little stuff sets me off and it's unnerving because I used to be able to hold it in and I just can't anymore. Just the other day I was at the gym, had finished some cardio and picked an empty group exercise room to do some stretches in. It was quiet and dark and I had my iphone playing slower music while I stretched off Pandora. I had never heard it before, but Tracy Chapman's song "Change" came on, and I just broke down bawling in the middle of the room by myself. Oddly, I felt incredible relief, so I'm just going to let it keep coming as long as it needs to.

Love,

Amy

Taking the Girls to Florida

Hi Team,

Today I just got back from my good friend Jean's wedding in Coral Springs, FL. I was wondering how taking saline implants through security at an airport would work since a week and a half ago I got 100ml injected in each, and originally there were 70ml, so converting... yes that's more than 3.4oz each. Not to worry, they did not detain me for bringing too much liquid through the security gate. Don't go getting any crazy ideas though.

Jean's wedding was beautiful, and I was basking in the beautiful warmth of the South Florida weather and beaches. My friends were very patient in listening to me say "I'm just SO happy right now!" It's the cheesiest thing, but I really do feel like just the sense of being really content, in a warm place, on the beach, with some really close old friends, having a beer or dancing our butts off together making a fool of ourselves is really just the best it gets. It makes me so overjoyed to feel that now, that it brings tears to my eyes. Is that weird? I'm ok with being weird. It's just been quite a while since I felt that kind of happiness and joy, it's overwhelming at times how fortunate I feel.

On the same subject of feeling fortunate, I have also been reading "Interpreter of Maladies", an excellent book of short stories. Well written, short but densly packed with meaning, some sadness but always a healthy dose of introspection. I read the second story which talks about a Pakistani citizen living in the US during the time of civil war in Pakistan, watching the news each day living in fear that his family was dead or going to die, or just fear of the unknown for what he would return to. I think about my last post, slightly judging the customer service lady on the bank phone line, and consider for a moment that I could be considered just as lucky by someone in a different situation. I felt like it was silly that the lady on the phone was telling me about her close-call to going to the hospital for bronchitis (or asthma?) when I had refered to my hospital stay which was for breast cancer. After reading this short story I shut the book and took a moment to put myself in my place, as I had wanted to for the lady on the phone. Although I faced a life threatening disease, I got it at an early stage, which was cureable, and am now disease free, only 6 months later. I feel deep loss, but my hair is already growing back, I will eventually have new boobs (although not the same sense of sensation in them), I will eventually start dating someone who I know will stick around through the hard times, and I will survive. I worry, but I do not wake up every day in fear and anxiety, wondering if I or my family or friends will be killed today. On the contrary, I get to wake up, have a cup of coffee, go to work, come home, and pet my kitties while I watch the SF Giants win the world series. Go Giants!

Love,

Amy

My New Perspective

Hi Team,

So I was smiling silently to myself this morning and thought I would share with you all. I was recently going over my credit card statement for last month and realized there were a bunch of charges on Sept. 17th from Xbox Live that I didn't make... I haven't been totally with the program so I didn't notice until now going over all my line items. So, I called in today to dispute the charges, not too alarmed because there are not any other fraudulent charges on my account.

I went through all the info with the lady at the bank and here is a snippet of our conversation:

Me: "I didn't make these charges, and I need them disputed and credited back. I was actually in the hospital on that day and there's no way that would have been charged."

BofA Customer Service nice Lady: "Oh you know, I have so many friends that have had to go to the hospital lately. I have this bug that hasn't gone away for almost a month now, I think it might be my asthma or maybe bronchitis."

Me: Silence.

Me: Resisting urge to say "Oh yeah, mine was breast cancer and I was having both my boobs cut off"

Me: Mentally debating just saying "Well, I'm sure you'll survive"

Me: Finally mentally landed on the understanding option, I said "Yeah there's a lot of that going around, I hope you feel better." ~more awkward silence~

Oh my. I am so proud of myself for not shooting down her story. I'm sure her asthma and/or bronchitis makes her uncomfortable, and hopefully she does get it checked out. Need to remind myself that even though I've gone through crazy life threatening disease does not mean other's health concerns are not valid. And there's no reason to make nice customer service lady who is getting my money credited back feel bad.

Happy Sunday!

Love,
Amy

Back to Work and Finding Balance

Hi Team,

My first week back at work, done! This week has been exhausting, but good. It's nice to get back into a rhythm of going to work and feeling like I'm accomplishing stuff during the day. Every night this week I've come home and just hit the pillow and crashed. My body is exhausted, but I can tell each day it gets less tiring. It is amazing to me how much being mentally engaged all day long takes a physical toll on your body. I reminded myself mid-week that it's a good feeling, because it means I'm using my brain rather than just letting it sit there and fizzle out. Like going to the gym, eventually it will get easier as my brain gets back into shape.

That said, I've felt a weird off-kilter feeling this week, where I'm going back to work, and a lot of things are pretty similar to how it was when I left, but I feel totally different. I recognize that what I've gone through has affected me in a major way and I could easily get sucked back into my daily life just as it was pre-cancer, but I don't want to. I want to honor what I've gone through and live my life with different perspective. It's a tricky balance, and I am working on maintaining consistency in slowing down enough at least once a day to recognize how I am spending my mental and physical energy, and making sure that it's spend where I feel it is most valuable and important.

I had my first fill on my tissue expanders this week, wasn't nearly as painful as I expected it to be - mostly felt like the muscle was just really tight. When I first had my surgery and came home, I had a lot of muscle pain and cramping, similar to a charlie-horse type of feeling. I was anticipating this again with the expansions, but at least with this time, I didn't have that. There is some soreness, but mostly feels like muscle tightness. Also, my plastic surgery nurse I learned has gone through this whole process herself in the last two years, and she was Fantastic at helping me learn more about the process and describing exactly what it felt like to her, etc. She even pulled out a spare tissue expander she had lying around the office to show me what it looks like. I found a pic on the manufacturer's website to show you guys what they look like. This piece of plastic is placed under the pectoral muscle, and the grey spot in the middle is the port where they can inject more saline to stretch out the expander and the muscle & skin covering it. Technology is amazing!

I recently was going through all my computer files I've been keeping through this whole process and found something I had forgotten about - a file I wrote the day I first got diagnosed. I labeled it "my fears" and it was literally just a journal entry listing all my fears and "what-ifs" - and this was before I knew I would have to get chemo, surgery, etc. All I knew was that I had a lump and it was cancerous. Looking over this journal entry today, I realized that MANY of these fears came true. Some of them didn't - I'm still alive, I still have a good job, and many reliable friends and family - but I've lost a lot through the process, and gone through a lot that I was terrified to do.

Facing my fears and being on the downward side of this roller coaster makes me feel more exhilarated - I faced my fears by no choice of mine and I am ok. It's a weird feeling of freedom, being released from anxiety when many of your fears come true and you're still alive and ok. If the next time or the time after that or just eventually, I die from it, then I know I lived facing those fears and living life the fullest I possibly could, and showing the people that are important to me that I love them. That's the best you can do. Life doesn't last forever, and it's easy to forget. Fears are not so scary when you remember that everyone is going to die at some point. Is that morbid? I don't feel morbid when I say that - to me it feels like a renewed sense of freedom.

My hair is starting to grow back in and look more full - pics are from just before work I think this past Tuesday. It feels incredibly soft, like baby hair. I love it.

Love,

Amy

Back to the Real World

Hi Team,

I start work on Monday. That's tomorrow. I'm kind of nervous about it because I am the type of person to just throw myself into my work and do my damndest to over achieve and make sure I am exceeding everyone's (including my own) expectations. I tend to be pretty hard on myself if I don't. There is some trite quote somewhere about 'you are your toughest critic,' but looking back on my life, man, I have been a really tough critic on myself. Now, I'm sounding harsh about it right now, but I don't regret all the work and expectations I've put on myself, it's gotten me to where I am now, and I really like where I am. That said, one of my Main (notice caps, "important here") life lessons I am going to take away from this whole experience is... drumroll... TREAT YOURSELF WITH KINDNESS AND PATIENCE.

Now of course everyone thinks, yes of course you need to do that... but at least for me, it's not nearly as easy as it sounds. I have this internal voice that has been telling me for 28 years to push myself to the limit and beyond. I am not saying that I won't do that anymore, I just think there is more of a balance to be found in life. Push yourself to excel, but when things aren't happening like you expected, you go with the flow and be kind to yourself. In order to get through chemo, one of the things that is necessary is the ability to have faith that there will be a light at the end of the tunnel, even if you can't see it or feel it yet. This requires quite a lot of patience, and what we tell ourselves in our mind is key to that. I am working on a more disciplined voice to myself, one that is loving, kind and patient, but still striving for the best in life. It's a work in progress.

Back to the original topic, work on Monday! I am nervous because I work in retail and if you haven't noticed already, holiday season is upon us in retail! This means crazy hectic work days that are filled with everyone stressing out to make sure this product or that purchase order arrives in time for the sales, we are priced right, and hopefully can make some money at the whole ordeal. Being in an online business and one that deals with many manufacturers means daily (if not hourly) analysis and moving based on how sales are going, changing plans, changing deals, and moving mountains to get it all done on a daily basis. This is a bit intimidating to me as I have been protecting my mind and body from too harsh of an environment for a while now, in the interest of healing and feeling happiness, and I'm not sure how this is going to go. Thus my new mantra, be kind and patient with yourself (perhaps I should add, "and others").

I also wanted to share just a quick road trip that Mom and I did on her last full day here last Monday. We had previously driven down Hwy 1 (Pacific Coast Highway) south almost to Half Moon Bay, so this time we decided to venture north. She was interested in seeing Muir Woods, which is just north of San Francisco bay and known for its beautiful and ancient foliage and huge trees. Unfortunately, the parking lot was full and people parked all the way down the hwy just to pay to get into the forest to see the trees. We joked that they truly had paved paradise and put up a parking lot - and we still didn't have enough parking to pay to see the trees. So, we kept driving and visited Muir Beach and Stinson Beach along Hwy. 1. It was a beautiful drive, and we found a bench to sit on just above Muir Beach that I want to come visit more often.

Some of you have asked "How are you feeling?" So, lest I not forget this is still quite a strain on my body, I will address that question. I have great energy lately, amazing how easy it is to forget the strain and difficulty chemo puts on both your mental and physical energy. I am so glad to have that back! A few things I can tell though, since starting to take tamoxifen, I definitely have far more achey joints, stiffness, and if I am not kind to my body, I also feel a constant anxiety or "on edge" feeling. Now, I attribute some of the "on edge" feeling to the tamoxifen because it's an estrogen blocker, but I'm hoping that it's also a function of the fact that I'm in a huge transition phase right now, and working on just having a stable, calm life for a little while. Also, let's not forget that I now have these big peices of plastic underneath my pectoral muscles. It's the weirdest feeling. Feels like your muscle is always tight and needing to be stretched out. It's not nearly as tight or sore as it was at first anymore, but still can't move around without feeling it pull on the muscles. I still have to be careful not to lift anything too heavy or make any weird sudden movements that could pull or tear my pectoral muscle. My first fill for the implants is on Wednesday, so should be interesting to see how my body responds to that. I've got lots of valium for muscle cramping so hopefully that will help the process.

The progress on the hair is coming along nicely - it now looks like a really short, slightly fuzzy cut, and I think I've finally gotten past the point of looking like I'm sick or there's something wrong with me. I had a moment of progress on my self-esteem the other day. I was at a happy hour and a new freind of a friend complimented me on my haircut. I simply said "Thank you" and let her assume it was just bold and different instead of going on to explain to her about how I don't like it and had to go through chemo to get it. I just let her assume that I'm that boldy/funky chick with the cool super short haircut. Yep! That's me! :)

Love,

Amy

A New Page Turned

Hi Team,

Mom went home today. Watching her walk into the airport with her bags, I flashed back in a moment of panic to the same 5 year old me in kindergarden, screaming inside - Wait mom!! Don't leave me here by myself! Who are these people and how will I know if I'm going to be ok?! When are you coming back to get me?!? Can I go with you?? Please??! ... breathe... breathe...

It was a challenge living in a tiny SF apartment with the both of us, her on my couch the whole time, but I already miss her. It's so quiet here now! It was so nice to have your mom when you're sick, helping me, making me tea and making me smile when I just felt as shitty as I possibly could - and when I was feeling ok, mom and I are good friends, so she was a great co-explorer. It's weird being used to having someone around all the time, and knowing they are gone now. Good to move on to the next transition, but sad all the same. Four months was a long time for her to be away and I'm sure all the Kona crew (especially my dad) will be glad to have her back.

I knew at some point there would be some anxiety to going back to "regular" life - I thought it would be when I went back to work (next Monday already!), but it definitely started today. The thought of "shit, I'm all on my own now" nobody here to help me reach something or look at a weird scar or (insert quazi-emergency medical crisis here) and analyze to help determine the severity with me. I can do it, I have no other choice, but I wonder how many women go through this and actually live alone with no parent or significant other. I guess I just need to be thankful for not being a single parent and going through something like this with kids to take care of on top of it all.

Started going to a therapist today at Kaiser, felt a little strange to me as she seemed to want to just make sure I wasn't in need of any *more* medications, but I assured her I had all the Ativan, Valium, Tylenol PM, etc etc you could want at home. Then she seemed to be unsure about my being ready to go back to work and I reassured her that it would be healthy for me to have something to focus my mental energy on, and hopefully have some successes. Actually, I spent a lot of time reassuring her rather than vice-versa... not sure if she will actually be helping me sort out all the emotional bullshit that comes along with what I've gone through, but someone's got to... so thank you in advance to all my close friends. Thank you all for not charging me what a therapist would for your time. I feel like I have a bit of PTSD, I still have weird violent crime dreams and moments (days?) where I just totally lose control of the crying. At least if I say I have PTSD, that implies that my trauma is over right? Post-trauma? That's progress...

Still am getting used to trying to embrace my new look, which is changing every day - hair is somewhat filled in although still looking like a buzz cut, boobs... well, those are going to have to be a work in progress for quite some time before we're done with reconstruction. They say the whole process takes 6-9 months depending on how much I can take with my fills each time, and how big I want to/can go. Then I can have my exchange surgery, where they go in through the same incisions and switch out my tissue expanders for permenant implants. It will take a while.

I want to put all this behind me, but I have to be kind to myself and remember that you don't just go through a life-threatening diagnosis, chemo, losing your boobs, hair and boyfriend, and just put it behind you. It's all life changing in so many ways. I need to honor that more mentally now that I can stop holding it all in so I can just be in survival mode. Being in survival mode for 5 months is super hard to let out down from - feels like a swirly combination of panic, relief, anger and feeling lost, not knowing what to do next. I'm sure it will progress into something more constructive (at least that's my hope)... but again, a work in progress, such is life.

Love,
Amy

More Introspection and Fun

Hi Team,

I have 2 more weeks before I return to work after about 6 months on disability and I am trying to make the most of it. I of course, still have Dr appointments - follow ups, checkups, etc at least once or twice a week but also trying to fit in as many things as we can think of to uplift my overall mood and get mom out and about in the bay area. She goes home Oct. 12th!

This past week I had follow ups with both my plastic surgeon and my oncologist. The PS I have still not quite got his sense of humor or demeanor pinned down, it's hard to in 30 minute office visits, but for example, mom asked him "So, is Amy cleared to drive now?," to which he answered "Well, could she drive before her surgery?" Ha. (Yes I am allowed to drive now). Dad likened it to the Dr. office joke where you ask, 'So doctor, should I be able to play the piano now?' ('yes that will be fine') 'Great because I never could before.' What a joker. But seriously, it gets a little frustrating because it seems more like a social visit than a session where I can get information. But, just trying to go with the flow - looks like my incisions from my surgery are healing well, there are still steri-strips over the incisions but I'm supposed to just leave them there until they fall off. He said the placement of the tissue expanders looks/feels good and we will start expanding them the next time I come in the office.

My oncologist on the other hand gave me a big hug and reviewed my post-surgery pathology report with me: No cancer found in lymph nodes, no cancer found in breast tissue, only signs of dead cancer cells, nothing left alive. He said, you can never know 100%, but this is about the closest we could have come. (big hug) I'm sure he doesn't get to give that news very often. The next steps for me are to continue my herceptin IV treatments every 3 weeks until next April, and this week I got started on tamoxifen, which I will be taking for the next 5 years. The type of cancer I had grew with the feeding of estrogen and HER2 which is a protein. The herceptin blocks any cells from being fed HER2 proteins and the tamoxifen will block estrogen from certain types of cells so that my type of cancer couldn't grow. Now, you are probably wondering, as I asked my oncologist - ok, I have been given a clean bill of health, and I have no more breast tissue, is it really necessary to do these ongoing treatments? He said, we never know 100% - it is possible that a cancer cell could have gotten through the chest wall and into any part of my body even though we didn't see any signs of it in the surgery. These treatments will just sweep the body and make sure that if there is any single breast cancer cell left in there, it will wipe it out. We all laughed at my analogy - it's like packing up your suitcase at your hotel room and then doing a final sweep to make sure you didn't leave anything valuable under the bed or in a drawer.

I still wake up every day with a feeling of really deep sadness and loss. I really think my all-clear news for my cancer maybe allowed my mind to take a step back and say, ok, we're not fighting a life-threatening disease now, so now all this other mental/emotional shit that was inside me is coming out. The good thing is, I called Kaiser and they set me up with a therapist to help me work through my feelings of loss, lack of self esteem, and anger about how and when my relationship ended. They scheduled me an appointment 2 weeks from when I called but told me if I have any thoughts of suicide creeping in, please call back (hmm, that's what I have to say? Can I have an appt now if I say that?) Lol. Anyway, that will start for me next week.

Mom and I have been talking a lot, introspection on my life and just looking back. I have a little bit of an "of course" attitude about what's happened to me, not self-pity, but I was just looking at my life going, of course I would be in the .005% who get this kind of breast cancer at my age. I am also that person whose best friend died in a freak car accident in college and had my 2 closest grandparents die and an uncle (close, whom I had lived with) die in a freak scuba diving accident all within 6 months. I am the girl who got engaged and then was shocked to find out my (ex) fiance didn't want that after all and had to say "just kidding" to all the save the dates we had sent out. So it makes sense that I would also be that girl that got breast cancer at 28, and dumped by another 3 and a half year relationship right in the thick of my pain and challenges. But my mom made an excellent point, which ended my little pity-party right quick. I am also the girl who made my way from a poor upbringing on a small island to go to a great college, work in Washington DC for a summer, get a job right out of school for a good company in a big city, make it financially on my own in the city - I am the girl who hiked the Inca Trail to Macchu Picchu and planned and did my trip to Vietnam, saw Angkor Wat in Cambodia and the beaches in Thailand. I am the girl who has parents who are still together and love each other, and are still around to help support me. I am the girl with some really dedicated friends who know me to the core and help lift me up when I am not able to. I am the girl who gets the totally clean pathology report after chemo and surgery, where that was not a likely situation either.

My point is- yes life has it's challenges, and I've had my fair share of them for my age, but I've also gotten to have my fair share of blessings (not without a lot of hard work on my part) and I don't regret any of it. I have an interesting story, that's for sure, but I am extremely deeply grateful that this is my story. Grateful that my story has excitement and yes pain, but also a lot of successes, love and joy. And I know and expect that life cycles through in this way. You have times of fun and joy, and there are times of pain and sadness, and either one will come back around eventually, but I have to just appreciate and feel deeply the joy when I am in that side of the cycle and when I am in the harder part, just have faith that if I take it one day at a time, the joy and happiness will come back into my life.

To add some pictures, because what good post doesn't have at least one pic- Mom and I took a little mini-road trip down hwy one just to Half Moon Bay and stopped at some of the beaches along the way. My full album is on facebook, but here are a few pics to share. The first picture was one of my favorites because of the juxtaposition of the dead weeds in the foreground to the beautiful beach and cliffs in the background. Sometimes our lives feel like this, but we just have to look a little further to see the beauty.

Love,

Amy

The week after

Hi Team,

Although I wanted to leave my wonderful news up as my top post for a while, thought it might be time for another update. Over the last week, every day has been better in terms of how I feel physically. I still have to keep gauze covering my inscisions - and I seem to have a lot of them, 5 total. I have to wear a compression bra at all times - a sports bra that clasps in the front to keep my implants from moving around while my body creates scar tissue around them. Most of the time it's just soreness all over my front. My reaching ability/range of motion is very difficult, feels like the muscles in my arms haven't been stretched out for months. So, working on the arm stretches. The worst of it physically has been that every night at least once I wake up with really bad cramps in my pectoral muscles, feeling like charlie horses. I just have to breathe through it and try to stretch my arm out to stop the cramping. I'm hoping this goes away as my body gets used to having plastic things under my muscle, but we'll see. Maybe I'll just have to ask for more valium from my plastic surgeon.

Emotionally it's been a lot harder. For some reason I've been able to keep my shit together pretty well for the last months, despite having gone through menopause (haven't had a period since April but stopped the shots that force that on 8/3... maybe I'll get it back, maybe I won't), despite being exhausted from chemo and stuck in a tiny apartment for almost 6 months, I have kept my shit together. Lately not so well. I think I just stacked two more major things on top of everything, so now, being bald, getting my boobs cut off and being dumped 5 days before my surgery was just all too much for me. I cry every day. I've never been that big of a crier, but for some reason, I just can't hold it in anymore. I look in the mirror and although I know I love myself, I haven't been able to do any of the things I love, I don't recognize myself with my lack of hair and boobs, and being dumped with that kind of timing really took a toll on my self esteem. It took away a major source of comfort and knowing I was loved at a time when I really needed it. Of course I get a lot of comfort from my friends and family, but knowing your man loves you is a different kind of comfort, and having that taken away at a time when so many changes are happening to me physically and emotionally is very hard. I know that beauty comes from within but I just feel a really really constant deep sadness and loss. For my body, for my relationship, and just for the future life I thought I was going to live. I know I will come around and already am at times excited about the possibilities ahead of me, but right now a lot of the time, I am mostly sad for my all my losses.

All that said, a lot of you have been asking for updates on how my hair is looking - it is growing back a little now, and as Sandra (Anthony's daughter) said last time I showed her my blog "it's all words!" (with distain). So, making sure to have some fun pics this time:



















And at least our late summer has finally arrived in San Francisco, so spent the day at the park with mom and friend Marielle on Saturday, us at Chrissy Field (and me still bandaged but with the wonders of a padded push up bra creating some illusions):

And last but not least, some comic relief because I sure could use some in my life right now - we went to the bathroom near the park at Grace Cathedral on the top of Nob Hill yesterday and these signs were on the exit doors - does anyone know which door we should use?? :)

















Love,
Amy

Pathology Results from Surgery: Great News

Hi All,

So we knew the tumor had shrunk from my chemo, just from feeling it get smaller along the way. We knew the initial look at the lymph node during surgery was cancer free (but that was just an initial look, not final results). AND we knew that during surgery, they would be removing all the cancerous tissue so that after surgery I would be cancer free. We hoped that there would also be good margins around the area that had cancerous tissue so that the doctors felt comfortable about saying we didn't need to do any more treatment (ie. if it was too close to the chest wall, I might still have had to do radiation).

Let me share the email I got from my surgeon this morning:

"Hello, Wonderful news! You had a complete pathologic response to chemotherapy. No invasive cancer left. The lymph node is also free of disease. We should have a finalized pathology report by the end of this week. I will email it to you. CONGRATULATIONS!!!!!!"

Translation: My chemotherapy did such a good job that they found NO cancer in the tissue they removed from my breasts. Not only did they get good margins on what they removed, they found zero cancer since my body reacted so well to the chemo. This almost never happens (as my oncologist told me a while back). Also, lymph nodes definitely clear.

This is wonderful news and now we can really celebrate. Not only did I get rid of it, but we KICKED its ass. Majorly.

Yay!
Amy

The Whole Story

Hi Team,

So, been quite the eventful past week. Had my surgery last Wednesday and as Monika gave in the quick update, everything went really well. However, not without a little drama, so let me tell you the story!

I was supposed to be there at 9:30am for my 11:45am surgery... at 12 noon I was still waiting in the pre-op cattle call area, but at least they had given me a warm-air blowing gown and shoved a small TV in front of my face. ("here look at this while we make you wait"). Finally they took me into the surgery area, gave me a little versed, the drug they give you for conscious sedation. I felt it surge right through my body and make me totally relaxed, whether I was ready for it or not. It was great, they could definitely have a market for that on the street. Then on to the operating room and after not long, I was out like a light. They didn't make me count down or anything, they just started going around the operating room introducing themselves, and had me breathe some oxygen and I don't remember them actually getting all the way around the room with the introductions.

Next thing I knew, it was 7pm on the clock and I was in the recovery room. They almost immediately put me on a morphine drip since I had a lot of pain right away. I had my whole chest wrapped super-tight with gauze and an ace bandage. I had a bulb of local anesthetic (lidocane I think) with tubes going under my ace bandage that constantly bathed my cuts in a local anesthetic. I also had a cut on my side from my lymph node biopsy, which was not getting any local anesthetic, so was causing quite a lot of pain. Also, I had two drainage tubes going under my skin into the empty areas that used to be my breasts draining out the fluid that your body creates when tissue is removed. Quite a tangle of different tubes and drains and areas that were hurting and the wrap around my chest making me feel at times like I was being suffocated.

Mom and my friend Corey kept me company, feeding me ice chips and making sure they yelled at the nurses for anything I needed. At about 10pm, the nurses notified me that the hospital was at capacity and it looked like I would not be getting a room that night. Now, the recovery room that I was currenly in was constant chaos. People were coming in and out, yelling at each other, lots of nurses since I believe it has to be at least 2 to 1 (nurses to patients), lots of general noise and light. I cried when I found out I would not be getting any peace and quiet - I was tired, frustrated, in pain, and just told that I wouldn't be getting any more comfortable until at least the next day. To boot, it seemed that they were having a staffing problem because the nurses seemed to be extremely pissed off that they had been asked to stay overnight as well.

The next morning, after a pretty constant pushing the button for morphine all night, I got to have a long talk with the manager of that area of the hospital, of course him kissing my butt as much as he possibly could so he didn't have a lawsuit on his hands. I think he was surprised that although I was firm and angry and told him my situation was simply not acceptable, I really did spend a while trying to get to the root of the problem with him and asking him how I could use my voice to enable him to create a solution so this doesn't happen again. I will follow up on that after I'm feeling a little better, but he seemed to be relieved that I didn't threaten to sue. Not long after that, I got up in a room and slept off my pain and drugs pretty much the rest of the day and night.

Dr. Langer came in to visit me on Thurs. morning and told me that the surgery went really well, she did not have to make very big incisions to remove all my breast tissue, so she thinks eventually, the reconstruction results will look really good. She said they didn't see any signs of cancer in their initial dissection of my sintenal lymph node during surgery, but of course the final results of that will come in my pathology report (still waiting on that but should be a few more days). The final pathology report will also give us the important peice of information of how much tissue they found still with cancer in it - it's possible that the chemo got rid of all the cancerous tissue, or that there still was cancer, but the important thing is that they have healthy margins around all the tissue they find that was cancerous. I will be sure to give an update on that information once we get it. They did place tissue expanders under my pectoral muscles, but weren't able to expand them much since my muscles and skin were so tight already. It will take time and many sessions of expansion to get my implants back up to where we want them to be. As I told my friend Danielle, it's like those "pump it up" shoes back in the 80's. So overall, surgery went really well even though the hospital situation was a nightmare.

Today I had my follow up appointment with Dr. Langer and she just had the biggest grin on her face the whole time. She said I am already healing so quickly and well she is just thrilled. The drainage tubes out of my sides came out already today, when originally they had told me 2-3 weeks. This means I can start trying to stretch my arms and get back some of my range of motion - but not too much! Don't want to re-open any scabs that are trying to heal up. I am still not supposed to lift anything over 5lbs or drive for a while. I got to have my first look under my ace bandage today too. It was the weirdest thing. My chest almost looks concave, with two long scars where I used to have nipples. It's very shocking. But, I will have breasts again, it will just take a lot of time and patience.

I can't help but feel mutilated and scared - scared of what people see when they look at me, and just scared of not being self-confident, even though I've pretty much always been pretty self-confident. For example, one of my anesthesiologists in the hospital was tall, handsome, dark hair, blue eyes, no ring... and I talked a little to him, but as he was walking away, I actually thought... I need to wait a while on this flirting thing, who wants to flirt with a bald cancer patient who just got her boobs cut off. He probably just feels sorry for me. I know it's self depricating, but I am just going to have to start working on this with myself and my friends, being dumped 5 days before my surgery certainly didn't help. But I do have faith that I just have to be patient with myself and it will come back, let's call this my 2nd puberty. And this time I am going to get a therapist to help me.

Next appointment is next Tuesday, I have my first follow up appointment with my plastic surgeon and I think we will talk more about next steps then too.

Thanks to everyone for all your love, thoughts, prayers and positive energy for a successful surgery - it worked! Now more of the same for a quick and successful healing of my wounds (both physical and self-image wise).

Love,
Amy

Surgery Update

Happy to report that Amy is out of surgery, awake but very very tired, on a morphine drip, and hopefully going home tomorrow. Lymph node pathology is clear - miss Amy is cancer free!!!!

Surgery Tomorrow

Hi All,

Had a rough weekend and last couple of days trying to mentally preparing for surgery. Got back from my latest adventure to Portland last Thursday, and last Friday, Anthony and I broke up. Not going to go into a whole lot of detail on this other than to say it has caused me a whole lot of sadness and just overall disappointment and a feeling of great loss. I am trying my best to focus all my mental energy on being positive and healing for my body, but it's a great challenge right now.

Tomorrow I'm having a bilateral (both sides) mastectomy with tissue expanders. This means they will go in and take out both of my breasts, and put temporary implants behind my pectoral muscles, which will be pumped up over time as implants. Eventually, 6-9mos from now, I will have another surgery to have the final permanent implants put in. My surgery starts at 11:45am tomorrow morning and I'm supposed to go the hospital at 9:30am. They always make you take all your clothes off and put on this thin gown, then wait for a really long time in a freezing cold room. I'm bringing a jacket. The surgery should be about 4 hours long, and I will be in the hospital for one night. They will also be doing a lymph node biopsy to make sure that the cancer has not spread to my lymph nodes, but the expectation is that it has not. We'll know for sure tomorrow, and the final pathology report comes back a week from tomorrow, telling us how much cancer they found and if they got good, clean margins around the tissue they remove.

I'm nervous. I've never been under general anesthesia and I'm a little afraid of where my mind will take me since I haven't been the most stable person mentally lately. But, I'm hoping regardless of where it goes, I will not remember it... that's the hope anyway.

Thank you for all your love and prayers tomorrow.

Best,
Amy

Post-chemo Adventures

Hi Friends,

Once the mental chemo fog wore off and the physical exhaustion lessened, I was able to go on a few adventures in between my last chemo treatment and TOMORROW, my double mastectomy surgery. First, I had my Ta-ta to the Tata's party on Aug. 21st. It was so nice to see so many of you, play pin the boobies on the babe and eat boobie cupcakes. Sharing a few pics -

On Wed. Aug 25th, headed down to Orange County to visit Anthony and family, and went down to Rosarito Mexico for the weekend. I almost didn't make it to Mexico because I got sick with a fever, spent a night in the Irvine Kaiser Hospital. I was super pissed to be in a hospital again, and right after I thought I was done with the tiredness, sickness and pain - I was ready to have fun! But thanks to an atom bomb of IV antibiotics and a sympathetic doctor, I was released in one day and given the OK to head down to Mexico! We had some of the best food and great times with friends and family. We also went to an Argentinean Tango melonga (sp?) and I got to dance with one of the teachers! It was so much fun!!

Then, back in San Francisco on Aug 30th, Mom, Dad and I drove up to Napa on Sept. 1st to bask in the sun and drink delicious wine. Our friend Karen lent us her guest house and we sat by the pool, entertaining her 2 dogs and eating some of the fresh veggies from the garden.

Came back to SF on 3rd, and decided that since I still had a bit of time and could fly for free with Anthony, to go spend Sept. 5-9th in Portland, OR just to explore and have fun. In Portland, Anthony and I rented a car to go out and tour the Columbia River Gorge, drove out from Portland to highway 84 to see the beautiful Gorge, see waterfalls and do a few hikes. We also tried out a few of the local brews - Portland is the micro-brewery captial of the US. My favorite was the blueberry ale that I had, smelled and tasted like a blueberry muffin. The weather was cool and rainy, but our hotel had a hot tub and indoor pool. One of my favorite things was the culture of street food in Portland, whole blocks of street food vendors, lots of different kinds. I tried a Korean Bulgogi Taco. We also tried the famous (from Man vs. Food) voodoo donuts, which I was excited to see had many vegan donut options. Anthony's favorite was the maple bacon bar. That's right, bacon. Portland was a great town.

I had a really great time with all my adventures and feel really lucky to have had the time and people to adventure with. That said, my adventure time is up and tomorrow is the surgery. More on that next post ~~

Best,

Amy

Long Time, No See

Hi All,

Tonight is my "Help me say Ta-ta to my Ta Ta's" party! I'm really excited for multiple reasons - 1. It's fun to have a boob-themed party, and when else do you get the excuse to do that! 2. I get to see a lot of people that I haven't seen for a really long time, I feel like I have a major friend-reunion coming up! and 3. When I started scheduling this party, I made it something to look forward to because it marked the end of my chemo. Now I understand that my last chemo was a while ago, but I used to get chemo every 3 weeks - this party marks the end of my last 3 week cycle, and I will not be getting any more!

Physically I've been feeling pretty good lately, well enough to go to Chicago for my good friend Becky's wedding. The wedding was beautiful, and I saw a lot of good college friends, some of whom I haven't seen for 5 or 6 years. It was amazing to see all of them, but at the beginning I had a little bit of a weird self-conscious, hmm I wonder if all of these people are shocked by seeing me bald, I'm sure they don't all know what I've been going through. Oh well, just another one of those things that could be an uncomfortable situation but you just have to plow through, smile and eventually get past it. I got comfortable in my skin pretty quickly and had a great time dancing and having fun.

There are definitely still some lingering side effects of the chemo that won't go away anytime soon - I have a strong numbness/tingly feeling in the tips of my fingers and toes, it makes it a little hard to type, I make a lot more mistakes than I used to because I can't feel if I'm right on the key or to the edge of it. My fingernails are still turning purple and look like they are going to fall off, although they may just grow out and not fall off entirely, can't really tell yet. I've been trying to keep them painted so you can't see it too much. I had a glass of wine last night and woke up feeling a little headachey and dehydrated, so although I can drink from time to time I need to not just let it all go crazy now, or I am going to be hurting. And, I can't wait until my hair starts growing in... I still have weird chemo-fuzz that looks like baby hair on the top of my head, barely visible. I have heard that when it actually starts growing in, it will look more like real hair although may be curlier than pre-chemo. We'll see! Should be about another month or so before it starts growing in probably.

Thank you all for keeping me going with reading my posts and following my journey through chemo with me. I can't tell you how much it means to me that people want to know what I'm going through. Even though it's hard to explain, it does help that there are people to tell. It makes me face the facts and be real even when real is really hard to face. I am definitely ready to let chemo be a memory that will probably be blocked out fairly quickly as many really difficult memories are. I'm sure I'll never forget entirely, but the really bad physical feelings will fade and higher energy will bring back somewhat of a normal life, it has already started to. It has made me much more conscious also of how much energy levels affect your ability to be happy and emotionally cope, and I think something I will take away from this (among many things) will be a renewed effort and importance on managing my energy levels to maximize my life even post-cancer.

I have a few weeks here in between chemo and my surgery - final surgery date is September 15th. I will try to post a few times, but I will get back to regular posting when my surgery is upcoming. I hope to see all of the local crowd tonight at Lush Lounge (Sutter & Polk) at 8pm.

Love,
Amy

Crappy Week but a few fun Pics

Hi Team,

This week has not been so much fun, but that's typical for the week of my chemo. All I have to say is I am very glad that God made percocet. Despite it's unpleasant digestive side effects.

The Happiness Project book was good for the first few chapters, but I got a little bored of it about halfway through because she continually sites all these "experts" on happiness about studies that have been done and statistics that show how people get happy, etc. I was more interested in her personal journey, but got a little tired of all the studies and stats. I've switched now to a funnier book my friend Addie was laughing out loud to - "My Fair Lazy" by Jen Lancaster.

Posting a few pics that I had saved to share with you all - Addie and myself and mom went to a salsa dancing lesson the night before my last chemo. Then another pic of Anthony and I at my last chemo. I have my "get me the hell out of here and never bring me back" smile on - I guess as happy as you can be while getting infused with dangerous chemicals. We always joke w/ the chemo nurses because they finish putting these bags of chemicals directly into my jugular vein, then they remove them from the IV stand with gloves and carefully dispose of the bags in these secure BD sanitation "hazardous materials" bins. Yes make sure nobody touches those, they are dangerous, could kill someone!

Anthony and I at my last chemo:

Kinda blurry but Addie and I the night before my last chemo:

Love,

Amy

LAST ONE

Hi Team,

Short post because I'm really tired, but I just wanted to share with everyone that today was my last chemo!! Whoo!!!! I still have the after-effects to go through, so it doesn't quite feel "over" to me, but at least every time I feel crappy over the next few weeks, I can remind myself that this is the last time I will feel this way for a while.

Love,
Amy

Happiness

Hi Team,

I've been contemplating lately buying an e-book reader, to help consolidate the library a little, and make it a little more portable. I generally (although not so much lately) am on the go quite a lot and I like the look of the e-readers, seems like an easy way to take a few books with you rather than having to choose one that may or may not fit my mood on any given day. That said, my friend Addie lent me her Kindle the other day to let me read a book on it and see if I thought it was easy to use, etc. This is all beside the point because I really just wanted to review the first chapter of the book I started - 'The Happiness Project.'

Now as a preface, I loved 'Eat, Pray, Love' and have tried, even BC (Before Cancer) to live my life in a no-regrets manner. That said, I still find myself on a somewhat regular basis feeling slightly irritated, not quite happy, feeling like there is just something missing and just generally like I could be living my life as a happier person. In the big picture, I am very happy with my accomplishments in life, I have already accomplished quite a few things that I consider to be on my 'Bucket List' and generally consider myself to be lucky in having a loving family, great, fun, supportive friends, a good job with a disposable income, and a steady roof over my head. I do a decent job (even BC) of checking in with myself to make sure that if I were to die tomorrow, that I would be happy with the way I have lived my life. All that said, on a daily basis, getting up and going to work or just living my daily life, there is definitely room for more consistent happiness.

That exact subject is what Gretchen Rubin tackles in 'The Happiness Project,' and with a slightly more realistic feeling than quitting your job and marriage and leaving the country for a year. Although that does sound somewhat appealing to me, I don't have the ability financially (or at this point health-wise) or even in my risk-taking sensibility to do something that dramatic. She takes on the subject of every-day happiness in a methodical, project-based, very left-brained manner, with the overarching intention of increasing her day-to-day happiness. Now, as I've only read the first chapter and a half, I don't have any big epiphanies from the book yet, but already I love the subject matter and stay tuned for my review on the rest of it.

I've often contemplated how short life is and how people generally tend to put their own happiness in other's hands. For example, my boyfriend/girlfriend/wife/husband/partner/cat/dog/etc doesn't make me happy; my job/lack of job/lack of income/etc doesn't make me happy; my city/small town/country/president/taxes/lack of resources/etc doesn't make me happy. I actually came to a realization a while ago, specifically my junior year in college, that it was up to me to make me happy and nobody else is going to do it for me, whether I like it or not. Having had this realization fairly early in life does not mean that I remember it on a daily basis however, and I still have quite some opportunity for it's application in my daily life. But, one interesting aspect that I have applied fairly frequently, and still believe, my friend Monika laughs when I tell her - that if you don't feel happy, sometimes you just have to smile at that girl in the mirror until she smiles back at you. If you smile, and act happy, even if it feels like you're faking it for a little while, you will eventually feel happy - because happiness is contagious! Of course there is more to it than that I'm sure, but you have to start somewhere...

Love,
Amy

Good Week and Plastic Surgeon Debrief

Hi All,

I wrote this last Friday, and just realized, signing back in to post again, that I never actually posted it! Amazing... anyway, for a two-post day, here is part 1... written last Friday.

This past week has been really nice, energy levels up and spent most of the week just relaxing and hanging out with friends from time to time. Only crappy thing is it seems that I've come down with a head cold over the last day or so - no fever, which is good (any fever of 101 and I have to go to the ER) but just runny nose, suffy sinuses, etc. I'm really hoping it clears up by Monday, because my LAST chemo is scheduled for Tuesday and I have a feeling that they will not do chemo for me if I have a cold. I want to be done though!!

This morning I had my first meeting with my plastic surgeon - Mom and I went in with a big long list of questions, most of which were answered with "I don't know that yet" or "They will tell you that with your pre-op instructions." He seemed to think I was making good decisions with my decision to take both breasts, and he did say that patients who are doing bilateral (both sides) and are small breasted to start out with usually get the best results... so that's a good thing for me. He also seemed to think it was a good decision to go with the tissue expanders and implants rather than trying to move tissue from the tummy (TRAM flap) surgery for many reasons - mostly that the surgery and recovery is a lot easier with implants, and if anything goes wrong you can take them out and start over. I signed a consent form for a bi-lateral mastectomy with tissue expanders. It felt kind of weird and final to sign that form, but I did feel a sense of relief and happiness that we're moving further in the direction of being done with this!!

If any of you want to learn more about the surgery I'll be doing, there is a really good video on You Tube that shows a woman's journey that is doing the same surgery - warning, you will see her scars and reconstruction and it's a little jarring if you're not ready for it, but I think she does a good job of showing realistically what it's like.

Part One (her showing scars 3 weeks after surgery)
Part Two (3 months post surgery)
Courage is my Strength YouTube Channel (other videos about her surgery)

Thank you guys for all your ongoing support - I cannot wait for this leg of the journey to be over, and hopefully it will be done soon.

Love,
Amy

Surgery Debrief

Hi Team,

I had a long and educational appointment with my breast surgeon yesterday, lots of stuff reviewed and a few big decisions made. First, it looks like in order to coordinate schedules with my breast surgeon (who will do the mastectomy) and the plastic surgeon (who will do the reconstruction), we will need to move my surgery date out to 9/15 - still tentative, we'll know for sure in the next week or so once the PS (plastic surgeon) confirms. On that note, I have my first appointment scheduled with my plastic surgeon for next Friday, a week from today - here's his website: Dr. Roderick Simonds

The big decision making I did in the appointment yesterday was between doing a bilateral (both breasts) or unilateral (only one side) mastectomy. I decided to do both, and here's why: Although I tested negative for the BRCA genes, there are a lot of genes out there that are unmapped and because of my age it is more likely that my breast cancer is genetic. If it wasn't genetic, there was only a .5% chance of me getting breast cancer, which while it still exists - isn't likely. It is more likely at my age that it is genetic, and we just don't know the gene yet. So this is one assumption that we are making to base the decision on. IF we treat this as a genetic cancer, my likelihood for recurrence is around 60%. Taking both breasts instead of just the one decreases my risk by 95%. So that is to say, my risk of recurrence goes from 60% down to just 2-3%. So I choose to definitely do both. Now there still is the option for me to do one now, and wait to do the other one until after I have kids so that I could breastfeed. In the mean time we would just monitor the other breast with MRI's and mammograms every 6 months (each one once a year so the alternate every 6 mos). I am choosing not to wait on it for a couple of reasons - first, I don't feel strongly about breast feeding - I think it's possible to have a healthy child, strong bond, and well adjusted all without breast feeding. I feel more strongly that I don't want to have to go through this process again. Also, I had my last obgyn appointment last October where I got a breast exam and we did not catch the cancer, so this past one developed in less than 6 mos. Now, granted that was not an MRI or Mammogram this past time, so we may catch it sooner. Thirdly, if I do the surgery on both sides now and just get it over with, I will not have to go through the whole process twice and the symmetry will be slightly better doing it all at once. Last but not least, I know I am this type of person - now that I have caught one cancer myself, I will probably freak out at every little tissue thickness I feel, leaving myself wondering if it is going to develop into cancer. Needless to say, there are a lot of factors and it's a big decision. It was probably one of the harder ones, as everything else seemed to have a strong recommendation one way or another and this was really just - what is most comfortable to me, and what are my priorities in life. Tricky. I do feel good about my decision though.

The other thing we reviewed is a lot of just exactly what will the surgery entail. So here it goes: They will remove all of my breast tissue including the nipples by cutting a circle around the nipple and removing it through that hole. They will also cut a small incision under my arm to remove at least one lymph node. During surgery, they will send that lymph node down to the lab to be cut open and looked at under a microscope, and if they do not find cancer, they will not remove any more lymph nodes and close that cut back up. If they do see cancer in that lymph node, then they will remove more lymph nodes to see how far it has spread. They don't anticipate finding cancer in the lymph nodes, but we will have to wait and see. If they do find cancer in the lymph nodes, then I will most likely have to do radiation as well. If they don't, then I probably won't have to do radiation. Then, after breast tissue and lymph node biopsy is done, the plastic surgeon will take over and put empty (or a small amount of saline, not sure yet) implants behind my smaller pectoral muscle - they cannot put implants just between skin and the world as there is just not enough protection with no breast tissue there to cover it. The initial implants are temporary Tissue Expanders (TEs) that will be pumped up to the size of my final implant to stretch the pectoral muscle and skin up to the size of my new breasts. This whole process of reconstruction will have more detail next week after meeting with the PS. Initially, my skin will look fairly loose and empty and over time these tissue expanders will be pumped up then eventually (usually 6-9mos) I will have another surgery to exchange them for permanent silicone implants. When I go home from my surgery in September, I will have a pain pump for the first three days that will have tubes under my skin and around my new breasts that administers a local anesthetic every so often. That will get taken out after 3 days. I will also have a tube with a little bulb at the end coming out of my side on either side that is for fluid drainage, since I will have fairly empty skin at first, the body tends to fill it with fluid that would just sit there and not be absorbed. So for about the first 2-3 weeks depending on how quickly my body stops making this fluid, I will have these tubes coming out of my sides and draining the fluids into little sacs, which I will have to discreetly hide in my clothing or clip to my waist - and I will have to empty and measure this fluid to see how I am progressing. After 2-3 weeks, my body will hopefully be making less fluids, and I will be able to get those tubes out. I will go home w/ the whole area wrapped in bandages and I will come in to get those bandages changed every so often, so I will not be able to get the area wet for a while, and will have limited ability to raise my arms, etc .

That's pretty much the synopsis of the surgery - I will get more detail on what I can and can't do post-op exercise and movement wise, and a more final surgery date (and therefore date I can go back to work also) once I meet with the plastic surgeon next Friday.

I laid in bed last night trying to fall asleep and found myself feeling really anxious. For a little bit I laid there and thought 'Am I making the wrong decision? Is that why I feel anxious?' And I tried to put myself in the position of only taking one breast instead of two and see if that lowers my anxiety level, and it really didn't. I realized that I do think I'm making the right decision, I'm sure that based on all the information I have and what I prioritize in my life (not having to do all this over again if at all possible, and breast feeding secondary and just not as important to me), I am doing the right thing. I am just anxious over the whole process. It's a lot to swallow and it's going to be very different, painful, and visible to the outside world. I won't have any feeling in my breast area anymore, and I'll have incision marks on my skin and no nipples. I can eventually tattoo or get nipple reconstruction if I want, but that's a whole other process after all this. I know I will be fine, as life goes, you just have to take everything one day at a time, but looking at it all in my future does seem a bit overwhelming at times. Of course, so did chemo and I'm almost done with that now! But the less comforting thing about that, was that chemo was/is every bit as hard as I expected it to be and then some. So that just leaves me with the conclusion of just diving in, getting it over with and coming out on the other side happier, healthier and with "more character." :)

Love,

Amy

The Classics

Hi Team,

Mostly been hanging out at home the past few days, catching up on some classic movies and reading my books. The classics I've checked off the list so far are Gone with the Wind, All about Eve and East of Eden. I loved Gone with the Wind, so far the other two were just B+ for me, and am queueing up Casablanca next on Netflix. Just one of those things where I feel like I should watch (or read) these at some point in my life, and what better time than now!

Mom wanted to make sure I shared a funny story with you guys - day before yesterday I was walking up the street close to home and this older asian man stopped in my path and bowed his head and put his hands in prayer. Now of course this is very sweet of him, but having come back from my trip to Thailand last April, what immediately came out of my mouth was (to mom) "Does he think I'm a monk?" A guy sitting to the side at a sidewalk cafe table busted out laughing at our whole interaction. I have to say I have some very interesting interactions when I openly sport my bald head around town.

Mom has also been pointing out that I do have some hair growing back in mostly on the top of my head, but to me it looks a little like the movie posters that are all over town for "Despicable Me":

Also thought I'd share a few other pics from recent events - Me, Sandra and Anthony at Chrissy Field during Sandra's stay and my most recent visit to my oncologist, Dr. Liu.

Love,

Amy

#5 Today and counting down

Hi Team,

Today was chemo #5 of 6... and I cannot wait to be done with this. Last week I did an echo-cardiogram since I had the weird dizzy spell this past time around, and herceptin (one of the drugs I am taking) is known to have a negative effect on the heart. Well, good news - my echo showed normal heart function on all accounts, and the dr. had previously done an EKG as well, also normal. So he said the heart is looking good and we can continue as we were with the chemo.

Even better news, the oncologist does a tactile exam of my breast where the tumor was each time I come in - when I first came in to see him, my tumor measured 5cm by 4cm. The last time I went, he deemed it "unmeasurable" because it had almost entirely gone away. This time, he said he thinks it was even more soft and he thinks we are continuing to get a great response. Of course our first question is, if I don't have a tumor anymore do I have to keep doing chemo? And of course the answer is yes - just because we can't feel anything doesn't mean it's not there, and he wants us to finish all 6 rounds before going into surgery. His hope is that we might possibly be able to get a complete response to the chemotherapy - that is very rare, and means that when they remove the tissue and lymph nodes during my surger, MAYBE they will not find any cancer in the tissue. Maybe. :) Either way the progress is great and although the treatment is grueling and really sucks, I am so thankful that I am getting a reward and some success from treatment.

This past weekend was nice, went into work on Friday for the first time since taking leave. I had a nice lunch of dim sum with a bunch of friends, then spent some time making the rounds around the office saying hi and chatting with everyone. It was a nice reminder that even though when I'm at work, I get caught up in the daily business and craziness of retail, I actually do really enjoy the people I work with and am really fortunate to have a lot of genuine, good people at work.

Saturday we went shopping with a good friend from Kona, Diane and her daughter Emma - it was fun to get out and walk around the mall a bit, trying to get a little more exercise, and what better exercise than shopping! Of course, I had to rest and have some tea after a little bit, but it was nice to get out a little more.

Overall I had a nice last week before my chemo, but I have a hard time going into these Tuesday infusions, I have been getting used to being more active, then I have to restart it all over again. I just can't wait until I can just be more active and not have to get beat down by the chemo meds again. Anyway, today's infusion went fine - I usually feel ok as long as I take my nausea meds according to schedule. For today and tomorrow I am still on a steroid and feeling ok, but after that the soreness starts to set in for the next week and a half or so. I guess at least I know what to expect, but on the other hand knowing what to expect certainly doesn't help much. Only two more times and counting... !!

Love,
Amy