Unexpected lessons

I had good intentions to stay on top of this blog. Although it was breast cancer that inspired me to start the blog, I didn't want breast cancer to define the blog. The same thing rings true for what I have been emotionally struggling with over the past few months. Who am I? What am I doing with my life? What drives me? What defines me? And how do I answer all these questions without giving BC (breast cancer) so much power over me? I'm not sure when I will find the answer to these questions, but I will tell you right now I feel a lot of resentment towards it. Hopefully you don't fault me for these feelings, nor for taking this long to post an update which of course centers around the infamous BC.

I apologize right now for starting this post with what may seem like sudden frustration, a change of tune from where I was in my last post. But I hope you can understand the ebbs and flows of the emotions that I am going through. The one thing I've always promised myself is to be true to my feelings on this blog, to not hide the good, the bad and the ugly. It's what has made this blog so therapeutic for me. There have certainly been some beautiful lessons I've learned from this. Lessons that have been a blessing, as I believe they've made me a stronger, better person. But I'd be lying if I told you I am continually thankful for the struggles.

This past Tuesday I was admitted to the hospital for an emergency surgery. A complete turn of events as my next surgery was not scheduled until August 13th where I was to undergo one of the final stages of reconstruction by getting my tissue expanders finally replaced with more natural looking implants. Additionally, right before the 13th Jon and I were happily looking forward to celebrating our 10 year anniversary in Las Vegas by renewing our vows in Elvis-style with our closest friends. It all began last week when I traveled to San Diego for work. Those in the industry know that every third-or-so week of July is one of the biggest events in the Entertainment industry: San Diego Comic-Con (SDCC). With a big film opening on August 23rd (The World's End), SDCC was a major marketing and publicity platform for us. Given the importance of this, and feeling like I was getting better every day, I personally made the decision I could work the conference. I knew it was going to be tiring, but I promised myself to not push my body, to listen to it when it needed rest, and to take it easier than past years. Again, good intentions, but not always the easiest to put into action. What I didn't plan for was the intensity of the walking, the overwhelming fear of the crowds bumping into my chest nor the fact that I'd be seeing all the wonderful business friends who have been following my journey since last year. As I've been very strict on limiting outside meetings given my constricted hours in the office, I haven't seen many people except those at my company. The overflowing love and encouragement of seeing people in San Diego was nothing short of inspiring for me, but in hindsight a bit overtaxing on my body. Who knows if it was any of this that caused the following set backs, or if it would have happened no matter what. I like to think the latter, as it was 100% my decision to take on the challenge of SDCC. All I know is that on Friday late night I started feeling intense pain deep in my right chest. I tried to sleep it off, but when I woke up the pain was still throbbing through my body and I soon discovered an odd oily fluid secreting from under the bandages on my chest. Thankfully my husband was with me, and we immediately called my surgeon who prescribed me antibiotics and scheduled an appointment for Monday. She said it sounded like I had an infection, and the drugs would hopefully clear things up. We took the train home and waited it out on Saturday and Sunday. On Monday I went in to see her and held my breath as she pulled off the tape that had been protecting my right breast since January (and was to remain there until my implant surgery 3 short weeks away). As she gently removed the tape, I instinctually took a quick look down and have since regretted that glimpse. Although the past year has certainly hardened my queasiness to needles, blood and all medical ailements, I was not expecting to see what I saw. I literally looked down into an open cavity on my chest. My skin had ripped, and the entire tissue expander was exposed. All I can say is my heart sank, and I looked up at my doctor who sighed and told me that my skin didn't make it. I could see her brain working as she was thinking out loud the options available to fix it. I remember asking her with tears in my eyes... "so, the worst case scenario happened to me, didn't it?", and she looked at me and confirmed that yes, it did. But the thing about my surgeon is she is one amazing positive woman, and she told me that it was all going to be OK, and that although it was a set-back, we would get through it. She finished by stitching me up in the office, something else I wasn't expecting otherwise I would have prepared myself with a driver (Jon) and some pain meds, something I definitely regretted as she sowed the last stitch in a place where my nerves had managed to come back to life. The pain only subsided when she gave me a numbing shot. (Perhaps the good news out of this is apparently I have some feeling back in my chest!) From there she told me I needed to report to the ER for surgery the following day so she could clean out my chest, replace the expander and add some Allograft (cadaver skin) which would add more skin to my very thin chest. The same would have to be done to the left side since I was now to delay my implant surgery another 3 months, increasing my risk of the same complication happening on the other side if I didn't fix it now.

So Tuesday I spent 4 hours in surgery again. I won't go into detail the pain of the IV as the 2 nurses spent minutes (felt like hours) moving the needle inside my arm trying to find a good vein, which I knew wasn't going to be easy since half of them are no longer working from the chemo. Jon was by my side as always, but this time before surgery I couldn't help but feel a bit deflated. It wasn't the first time I was scared before a surgery, but it was the first time I was worried about waking up. I don't know why, and of course it's silly now to think, but I think the emotions took the best of me.

I returned home on Tuesday night, but the recovery hasn't been easy, contrary to what myself and the Doctors were expecting. Wednesday I fought a 101+ fever, and my stomach and head were hurting so bad it was almost worse than my chest. I came home with 2 drains attached to my side again, and am on pain meds 24/7. I also seem to be fighting an allergic reaction to something from the surgery as I have hives all over my neck and arms. The good news is that I am slowly getting better. The first 48 hours were almost unbearable, I honestly must have blocked out how bad it was after my previous 2 surgeries. Beyond the physical ailments, perhaps it's also a combination of mentally being so frustrated with feeling like I was getting so close to seeing the light at the end of the tunnel, only to find out the tunnel is much longer than I anticipated.

I am again reminded how humbling it is to not have the ability to wash my own body, feed my own mouth and stand on my own two feet. Perhaps the human mind erases these things to help us cope, and it shakes my core again to be reminded what life was like in January and February. 

Today I'm feeling the best yet... I am well enough to write this post, something I've been meaning to do on better days. I'll have to start the rehabilitation process again, as I am not allowed to move my upper arms for 10 days (I feel like I look like a t-rex in those cartoons with little arms wavering about). And I have positive hopes that I won't be starting at square one this time, perhaps just a few steps backwards and not an entire mile.

I guess things just don't always go the way we plan in life, and I need to be ok with that. Another lesson learned.

Homecoming

I'm officially into my second week of work after being out for 5 months. It's been a big change for my mind, my body and my soul! My homecoming was incredibly special. All my co-workers decorated my office with the most amazing pink parade of streamers, signs and lanterns. I was so thoughtfully greeted with yummy treats, a birthday cake, and most special to me, everyone wore their IWBF t-shirts! It was a homecoming for a queen, and I am so appreciative of all the wonderful colleagues who have been following my journey from day one.

My body seems to be reacting decently to the Tamoxifen, besides perhaps a heightening of the current chemo side effects of joint and muscle aches, fatigue, hot flashes and night sweats. One of the hardest parts of this is the lack of a full night of uninterrupted sleep. The hot flashes usually wake me up several times in the middle of the night... quite frustrating for someone who has always had a hard time falling asleep. I'm not sure how long I'm going to have to deal with this, but a lack of sleep combined with fatigue is a dangerous combination for me!

Work has been flexible with my schedule which has been a blessing. I've been trying to get in after rush hour and leave before rush hour. The only problem is that with Los Angeles traffic, there doesn't seem to be a "non-rush hour" time of day. My commute is a minimum of 1 hour each way, and sitting in my car for 2 hours a day is really tiring for me. It doesn't seem to matter when I leave, it's still an endless row of red lights. I have been able to work from home a couple days which has helped break up the week.

I do have a better understanding of why my Doctor was hesitant for me to start work. Stress causes a major physical and mental strain on the body, and I'm much more conscious of it now. Although I've limited my hours, I still require a nap when I come home. On top of it, I'm struggling to find my balance, to teach myself how to take it slow. My instincts are to work at 200 mph, I'm trying to unlearn something that is almost part of my DNA. I also realize that with a wig on, I look like my old self. Even I forget that only a few short months ago I underwent 2 surgeries, and a few weeks ago I was at City of Hope getting 5 hours of drugs pumped into my blood stream. The drugs were so strong they killed my hair cells and burned my veins to the point that they no longer function. I can't expect myself to hop back to normal after everything I've been through, but sometimes appearances can be deceiving.

It's so easy to judge a book by its cover, but this journey has taught me that you can never assume to know what's truly behind a face and a body - even my own!

A New Normal

Monday starts a new chapter in my life. I'm finally heading back to work after 6 months of focusing on my body and fighting the breast cancer that put my life on hold. To say I'm ready would be a lie. Can anyone say they're ready to go back to "life as it was" after facing such a life changing experience? I see things differently, I react to things differently... I'm a whole different person. My perspective on situations has changed. I like to think I've learned some very hard lessons, the kind of lessons you typically ignore until you are faced with the reality of how precious and short life really is. In addition to a whole new perspective, I'm physically a different person. No, I'm not talking about these new c-cups I have! Physically I don't have the stamina I used to have. I tire easily, I still get spells of nausea and my body feels like I'm an 80 year old woman where every movement causes aches and pains in my joints and muscles. I have no idea how long these side effects will last, but I do know I need to try to slowly acclimate myself back into work at some point, and I put a date on that for June 3rd. Ironically June 3rd not only marks my first day back to work, but it is also the day I was brought into this world many years ago, as well as marks 6 months to the day when I was diagnosed with breast cancer (December 3, 2012). June 3rd will be a very remarkable day this year!

Besides mentally preparing myself for work, I've been slowly pushing my body to take on "challenges" it hasn't done since the surgery. I've grocery shopped, I've gone to the beach, I've put air in my tires, I've cooked dinner for my husband. These may seem like standard activities, but they are things I haven't done for 6 months and are now monumental events for me! I definitely cherish the reality that I am slowly building the strength to do them now.

I also had my first "post-chemo" appointment with my Oncologist yesterday. Starting tomorrow I will begin taking a drug called Tamoxifen, who's job is to block any remaining cancer cells in my body from growing. I'm still perplexed that currently there is no way to confirm whether any cancer cells remain in my body. After a double mastectomy and 4 rounds of chemotherapy you'd think there would be a test to confirm those major procedures did what they were supposed to do. Unfortunately there currently isn't a test, and by taking Tamoxifen I lower my chances of the breast cancer metastasizing by 33%.

So that's where I am. Monday begins my new normal, and with that I plan to "live for today and be positive for the future." - a quote I'm stealing from the amazing breast cancer survivor Betsey Johnson. Feel free to take it as your own, and live up to it. I certainly plan to!

The Aftermath

Hurray, I'm officially past the one week mark of my final chemo treatment. The week has been what I'd call "standard", with Friday, Saturday and Sunday being the worst. Those are the days that I literally lay on the couch or bed trying to find a comfortable position. The pain is so difficult to explain, it's like a combination of flu aches with a complete loss of energy and mental interest in anything. These are the days where I just don't want to see, talk or hear from anyone or anything. There is a small bubble of reality in my mind which makes me realize it's the weekend and I should enjoy having my husband home from work all day. But I can't enjoy it, so it makes me sad.

The good news is that I'm past that! This is the week where I slowly start recovering from chemo. Where other side effects become more evident because my body isn't completely shut down. I've written about most of the side effects, but some new ones have started to appear or old ones are more pronounced... probably part of the "cumulative" thing. First are all the side effects that come from premature menopause, with the most apparent one being the hot flashes and night sweats. If you know me, you know I'm always cold. I walk around the office with a blanket, I walk around the house with a vest, I rub my cold feet against my husbands warm legs in bed (a habit he absolutely hates!), I run to the store during a night out with friends to purchase a new sweatshirt (yes, always an excuse to shop!). I'm the cold one, I've always been! I wasn't prepared for such a drastic change in body temperature. These hot flashes are the strangest things, and they appear for no reason and with no warning. I'm experiencing around 10 a day, and it feels like a sudden internal fire has abrupted inside and quickly starts to spread outward towards my skin. I immediately throw off my sweatshirt, pull off my cap or bandana and watch as my body starts to perspire for no apparent reason. If I can make my way to the backyard to cool off in our 50 degree ocean breeze, I immediately do so. My biggest sympathies for all the menopausal women who deal with this. I won't know for at least 6 months whether I will be 100% in menopause. Although being this young and already in menopause breaks my heart, there's a part of me that feels like if I have to do this, let's only do it once!

Another side effect that seems more pronounced is the loss in taste buds and this constant horrible taste in my mouth. Many have described it as a metal taste. But when I hear metal, I think of the taste of blood, which in all honesty would be a much better taste than what it is. It's more like my teeth have a constant grip on a piece of aluminum foil. The hard thing about this is that the chemo in general has made my appetite slim to none. Doctors orders are to eat and drink, with water being a very important part of my healing. When I first started I thought the 64 oz of water per day prescription would be a piece of cake. I've always loved water, I could easily drink gallons a day and never understood people who didn't like water. Guess what? I hate water now. Water just amplifies the aluminum taste in my mouth. So trying to drink 64 oz per day is like torture. I've started cheating with Vitamin Waters and Orange Pellegrinos... those seem to go down a little easier. But in general, my body just doesn't want to eat or drink right now. The food it does want is definitely a complete 180 from my previous diet. I crave meat! And not filets, but the good juicy tasty sirloin cuts, tri-tips or hamburgers. Plus bring on anything super salty or super sweet. Kraft mac & cheese is divine, pizza is heaven and strawberries with doses of sugar is delectable. Thankfully my doctor prioritizes eating over anything, even if it means putting processed and non-organic foods into my system. The goal now is to get through chemo with energy (food = energy), I can focus on a healthier diet once I get out of the deep end.

What else? My nails have started to get really sensitive and are slowly turning purple. I don't think I'm going to lose them, although I've been watching them closely. And I'm still experiencing the rashes that started last time, so I've been popping Benadryl's each night to keep the itchiness under control.

If all goes well, I'll be able to slowly start back to my normal routine at the end of the month/top of June. Although my Doctor feels it's a little pre-mature, he understands I've put my life on hold for 6 months and I need to make sure the things that have taken a back seat are attended to. The one thing he's concerned with is what he calls a very typical "PTSD" that cancer patients often battle with once the chemo is complete. It's definitely something that's been on my mind since rounding chemo 3, and I'm scared for it, but as with everything I've dealt with... there's nothing to do but face it and deal with it when it happens.

So that's my latest update. If the last 2 chemos are similar to this one, I'll hit a fatigue wall today or tomorrow which I believe is a side effect of the steroids completely leaving my body. But my appetite should start to pick up, and hopefully my taste buds will eventually come back to normal. Or perhaps they will completely change and one day I'll enjoy things I used to hate like blue cheese, tomatoes and cilantro!

Thank you for all the congratulatory notes. Your love continues to push me forward. It's still hard for me to believe I've battled breast cancer, 2 surgeries and chemotherapy... but you'd be amazed at what your mind and body can accomplish when put to the test. Treat it right, pat yourself on the back for everything it has given you to date, and make sure to listen to it when it's trying to tell you something. After all it's given you, it deserves to be heard!

Neulasta No More!

Rejoice, today is my very last Neulasta shot! I'm feeling decent after chemo yesterday. Standard immediate side effects... no taste buds, upset stomach, overall fatigue. I've also oddly lost some hearing. If my lessons from previous rounds holds true, everything will hit me more drastically in a few hours.

After today I won't have to make this drive for another 4 weeks. When I do come back for my post chemo follow-up, I will learn some tips on how to stay healthy to avoid recurrence. I'll also get my next phase of treatment which is a pill called Tamoxifen. Tamoxifen is a hormone receptor who's job is to block any rogue cancer cells from growing in the chance Chemo didn't kill all of them. I'll be on this for 10 years unless new research comes out which can cure this disease all together.

To celebrate my last Neulasta, I've pulled out my new purple wig. I haven't named her yet, I'm open to suggestions!

Enjoy the beautiful weather today for those in California. It's gorgeous outside, don't forget to smell those beautiful roses!

Hurray! Chemo is officially complete!

To celebrate my freedom I took off the wig. Ok, still hiding behind a bandana, but baby steps! :) Cheers to another major milestone completed.

Chemo 4: Last One! May 1, 2013

Counting my blessings on this last chemo! Third try with the IV finally worked. My veins are going to celebrate after today. They are not happy with me, especially when the needle broke on the nurse's second try!

I'm rockin' out with the Roxy wig today. And I'm posting the best chemo accessory ever... a fingerless glove! Thanks to my chemo buddy Molly for the tip. My hands get super cold during the infusion. This is a must-get if you are going through chemo without a port.