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