Thursday, September 29, 2011

2 Corinthians 4:6 - look it up! Sharing some exciting news

I cannot tell you how many of my wonderful family and friends have inspired me in my writing. So many of you have reached out in various ways to tell me how my words have touched you, and words fail me to try to explain what this does for my heart. I try to repay you by digging deep and sharing what I can. What started as a coping mechanism and a way to share information about my health has become so much more.

As you all know, I began blogging as a way to purge the thoughts and emotions that were overwhelming me. What I found was that my words touched so many others who are sharing this journey with me, whether that be family, friends, or even folks who have not met me, but have heard my story. I cannot tell you what a gift that has been for me. To know that what write I affects someone else in a positive way is simply amazing.

Many people have said to me that I should share my words with others, beyond this blog. At first, I was not up to it, I was not confident that what I wrote was good enough, or that anyone other than my super supportive friends and family would care about what I had to say. But the comments and support kept coming. It led me to wonder. Then it led me to act.

You all know about the Reader's Digest contest, which is very cool and which I am doing quite well in so far (p.s. yes, I know there is an issue with the voting the last day or so. It seems to be back up now, so please feel free to continue to vote). But I submitted my work to several other media outlets as well. Today, I received word from Coping with Cancer Magazine. Their board had reviewed my submission and approved it for publication!! It is the most exciting news I have received in a while.

The particular article is titled "Redefining Survivor", and focuses on the fact that cancer patients become survivors the moment they are diagnosed. Being a survivor is not about acheiving some grand milestone, it's about celebrating every hurdle that you clear because each one is an accomplishment. To be able to share my words with folks who are also affected by cancer is a blessing. I hope that I may be an inspiration to them, make them proud of themselves, and perhaps make this journey a little easier for them.

I have been given a difficult cross to bear in life, but what I choose to make of it is up to me. I can do nothing but fight this disease (which would be noble unto itself) or I can fight and try to shine some light on a dark situation. I try to be a prism in this world. I take the sunshine that comes to me, and reflect it out in rainbows, to make others smile or make their hearts a little lighter.

"For God, who said, 'Light shall shine out of darkness,' is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ."  (There, I made it easy for those who didn't look it up yet)

Monday, September 26, 2011

voodoo and pirates.

I am very relieved to finally be rid of the nausea. It's so nice to be able to eat whatever without aversions or gagging. Taxol isn't quite without its issues, but as always, it's worth it. I am still finding that the second day after the infusion is still brutally exhausting. There doesn't seem to be any way around that. I guess that is regardless of the type of chemo.

The big side effect that people talk about with this hasn't hit yet: neuropathy. I originally posted this without an explanation of what neuropathy is. Basically, it's a numbness/tingling in the hands and feet. I wonder if and when that will happen. People tell me that it makes it difficult to pick things up or button shirts. Well, that's just great for someone who isn't exactly the most coordinated person to begin with. This should be interesting. For anyone who has spent any significant amount of time with me, you realize that I already have problems in this arena. I suggest wearing something waterproof around me at all times. I already have "spilling" issues. Just ask my brothers who sat through every dinner with me spilling my beverage at least once per meal as a kid.

The other main side effect is bone/joint pain. They say it's temporary, but it is, well, painful. I think the best way to describe it is to say that I think I now know what it's like to be a voodoo doll. It feels like someone is poking my bones, and joints with sharp toothpicks. Tylenol does help some with taking the edge off. It's not catastrophic, it's just annoying. It's kind of hard to get comfortable doing anything when you have a pretty constant ache.

I'm going with the image that Tammy gave me. I'm picturing the taxol as being little pirates with tiny swords stabbing at any little cancer cells that might still be floating around. That sounds pretty good to me.  Little mini Jack Sparrows running around, minus the drunken debauchery. (I don't want them poking the wrong thing in a drunken haze).  Works for me!

Side effects are what they are. They are unpleasant and annoying . However, I am grateful for them because it means I am fortunate enough to be receiving treatment where others may not be so lucky. So if it means little pirates are running around stabbing me, that's fine. To that, I say "yo-ho, yo-ho, a pirate's life for me!"

Saturday, September 24, 2011

short but sweet

I am tired as anything. BUT how wonderful it is to not be nauseous.... ahhhh! thank God for small favors.

Friday, September 23, 2011

Just call me the Taxol hunter

So two weeks ago, I was told there was no Taxol and I was going to have to do another regimen. I am pleased to say, I proved them wrong. After a lot of phone calls, text messages and scrambling, today I did it! I successfully received my taxol. I was nervous because the two people I know who tried had a reaction. But by the grace of God, the infusion went without a hitch.

Moral of the story: if anyone (even a doctor) tells you that you "can't" do something, but you believe that you can, then you have to keep going until you get what you want. Be your own advocate. Don't be shy. You have every right to speak up and you owe it to yourself. If you don't stand up for what you feel in your heart is right, you will regret it or second guess yourself.

Be relentless. I had to call my old doc's staff 10 times before I could get them to transfer my records to my new doc. I was tired and didn't have the energy, but I wasn't going to let that stop me. I knew this was what I wanted and other people's laziness, or whatnot, was not going to stand in my way. Bottom line is, don't settle for something that doesn't feel right to you. Push for what you want.

Wednesday, September 21, 2011

There are no tears on Hope Road!

Tonight was my first meeting with the Early Stage Breast Cancer group. It felt like the first day at school walking in, rather appropriate for this time of year. It was a little nerve-wracking not knowing what to expect. I made sure I put on my water-proof mascara in case it turned out to be a sob-fest, and I chose a chair next to the tissue box.

I should have known better. I was in a room full of survivors.

Let me tell you a little bit about survivors. They are amazing. They are strong. Those are the things we already know. But let me tell you more. They smile and laugh a heck of a lot. They are supportive. They are comfortable with who they are because an experience like breast cancer puts life in perspective for you. It strips away your ability to mire too much in nonsense, and just cut to what's real and what matters. They are honest and open. They want to help others because they know what it is like to feel you are the only one who has ever gone through the nonsense. They build you up because they have walked that path. You believe them when they tell you that it will be ok because they know better than anyone else. They are proof. And when you put a bunch of them together in one room the feeling is electric, invigorating. It makes you feel like you can conquer the world.

So, I did not cry tonight. I laughed. I shared. I listened. I smiled. I learned that I am not the only person who craved pork fried rice during treatment. I felt good about the choices I have made regarding my treatment, and the person that I am becoming as a result of my cancer. And I sang really loud on my drive home with my hat off and my window open, just feeling very much alive.

There is something so comforting about talking to people who are in various stages beyond you on the journey. It's like looking into a crystal ball, and seeing what your life might be like in the future, realizing it's a happy place to be. Envisioning yourself in various stages of hair growth, in various stages of being emotionally "past" cancer. It's a glimpse of what is coming and it really is overflowing with hope. Oh how I love my journeys to Hope Road.

So to anyone with a cancer diagnosis, please find yourself some support from others who have walked in your shoes. They can provide a different level of support than the rest of your world can because they really truly know because they have been there. There are many organizations to choose from: the Cancer Support Community, Gilda's club come to mind. Trust me, you will not regret it!

Tuesday, September 20, 2011

Medical update

So I finally concluded my hunt for Taxol today. I will be getting infusion one of four (as long as it's well tolerated) at Hackensack on Friday. The kicker is, my new oncologist called Monmouth to follow up on an issue on my pathology report. Within an hour of my appointment, I got a call from the nurse at Monmouth to tell me that they magically found me 4 doses of Taxol. Hmmm. Very "coincidental" if you ask me.

Anywho, at least I now have a plan again.

In other news, the Reader's Digest contest is going great. I keep on moving up the ranks, and took over the #6 spot today! Wooohoo! The only downside is there is a long time to go in this one and a lot could change. The voting is open until November 15. Yikes! If you have facebook and feel like voting, here is the link: http://apps.facebook.com/yourlifecontest/content/all-these-things-plus-one

Also, our Making Strikes team got knocked out of 3rd place in fundraising by some random team who went from zero to $5,000 in one fell swoop. Oh well, at least we are still the biggest. If you would like to walk with us, let me know and I can send you the info to register.

Tomorrow,  it's back to work. Always interesting. I am blessed to have a job that let's me work part-time from home during this craziness. That's my mantra.

Monday, September 19, 2011

no such thing as a bad hair day

While talking to Tammy today, I told her that I didn't think I would ever complain about a bad hair day again. That spawned a thought and a post. It's about appreciating what we have, and how the loss of something, even something as trivial as hair, can make you see what you do have.

I miss the days when humidity was my greatest foe, and when my solution was throwing my frizzy hair back into a pony tail.  I miss frizz! Frizz is better than fuzz, ladies and gentlemen. You heard it here first. I was brave enough to conduct a scientific experiment on your behalf to determine which is worse.  You can thank me later.

I am certain that you don't come out of a cancer diagnosis unchanged. I'd like to think that I am going to at the core still be "me", but perhaps a better me with a different perspective. I renewed perspective on life. I remember having a quote hanging in my first cubicle at Schering. The quote stated simply, "If you focus on what you do not have, you will never have enough. If you focus on what you do have, you will realize how blessed you are". I find it ironic that I am being taught a lesson that I already knew was true. I guess perhaps it was to test me, to see if I could put my money where my mouth was so to speak.

The bottom line, it's about focusing on what you have. Does your job drive you nuts sometimes? Maybe, but it pays your bills and it supports your family. In this day and age, that's something that others don't have. Do you have a lot going on and feel overwhelmed? Maybe, but it sure beats being bored and not having much to live for. Do you wish your house was bigger, cleaner, fancier? Maybe, but it's a home none-the-less, providing shelter and a place to gather with your family and rest. So many people lost theirs in the recent hurricane. Does your hair get frizzy when it's humid? Maybe, but it's wonderful to just have hair, and as I know know, frizz is better than fuzz. Do you have to go through chemo to get healthy, and does that suck? Maybe, but it means you have hope to live a longer life and are benefiting from years of research. The treatment might seem worse than the disease, but in reality, it's not true. It's wonderful to have the option to fight. Some people never get that chance.

Sunday, September 18, 2011

we all have our crosses to bear

It's so easy to look at my situation and throw a pity party. But what would that do? It certainly isn't going to make it easier or take it away. All that would do is magnify it, and make it even seem worse than it is.

Everyone has crap in their lives to deal with. Some people have unhappy home lives. Some people are underemployed or unemployed. Some people are lonely or unfulfilled in their lives. Some people put their lives on hold to care for loved ones. Whatever the case is, we all encounter crosses in our lives.

Early on in my journey in cancer-ville, there was a knowledge of something that occurred that I only shared with a few people. The reason I didn't share it broadly at the time was because it's an extreme story of faith and religion, and I was not sure how everyone would receive it. I only shared it with those who I believed would understand and not question it. I've decided that it is important for me to share this because it is a real account of my experience. Perhaps it will bolster faith for someone. If people choose to take something from it, wonderful. If not, well, no harm, no foul. If you do not feel comfortable reading about a Christian testimony, please stop here because I do not hold back on what occurred and my interpretation of it.

On the day that my biopsy was done, I knew in my heart what was coming. I knew because something happened. While I was lying on the table, I heard the tech say to the radiologist, "hey, do you see what I see?" The radiologist acknowledged that she did. She told me to look at the screen. I did and I saw what they saw. The tumor they were biopsy-ing was in the shape of a cross. The radiologist said to me, "I see a cross. And I hope you don't mind saying so, but I take that as a good sign". My thought immediately was "this is my cross to bear in life - cancer."

It was there, plain as day on the screen, and later, it was there on the films. I interpreted it a few ways. First, I took it immediately as a bad sign because I knew instinctually that my diagnosis was coming. My next reaction was that I knew that I was not alone in this battle. I knew that even aside from my wonderful family and friends, I had faith that I was not walking this road alone. There was my higher power involved.

So I continue to bear my cross, as do those of my friends and family who in many ways support me though out this, whether it is to push me to keep going, to listen to me when I struggle and need to vent, to suffer in their own hearts just watching me going through this, or doing a number of things to help me along the way.

Crosses are heavy, that much I know. They take endurance, faith and love to bear. But the fact is, everyone has them, and as a Christian, perhaps the focus is not on bearing the cross, but on the glory of the symbolic Easter, the thought of triumph over adversity. The reality that though the road is a tough one, one can overcome. Indeed, this is the cornerstone of my faith as a Catholic, is it not?

Friday, September 16, 2011

If you think you can...

It's ironic how consistent themes play throughout various stages of your life. I always been a believer in mind over matter, and the power of positive thinking. It had been challenged in the past, but certainly not to the extent of the past four months. One of my favorite quotes had long been "whether you think you can or think you cannot, you are right" (or something like that). I still do believe this is true.

What I love even more is that my son is learning this same lesson. One of his favorite books is the little engine that could, and he's shaping up to be one tough little cookie. But I digress.

I believe that you are as strong as you think you are. I believe that the only real stumbling block is the ones we put in front of ourselves, typically built out of fear, fatigue, or stubbornness. I believe that we are able to accomplish anything if we put our mind to it. Every successful person in life had common denominator: they believed in themselves enough to try whatever it is that made them successful. It doesn't matter to me if they are a child learning to read, a cancer patient making a way through treatment, an employee working under a tight deadline, the head of a large company, or the President of the United States. It's about believing in yourself and not stopping until you achieve your goal, whatever that goal may be.

Take for example Nancy Brinker, the head of the Susan B. Komen foundation, but not because of her organization's affiliation with breast cancer. She is inspiration simply because she was one woman who promised her sister to do something great, and she did! She was "just" one woman 30 years ago, now her organization has international reach, has impacted the survival rates of this crazy disease worldwide, and partners with some of the largest companies in the world. Just yesterday, they announced a partnership with GE. Yes, that GE, the humongous corporation we all know.

The truth is, everyone hits brick walls now and then. Everyone runs out of steam and feels like they can't go on. Everyone gets to a point where they feel like they just can't do it anymore. And regardless of what "it" is, that is a very real issue for them. So how do we overcome it? Sometimes, it's ok to say we just can't do it as long as we recognize that as a temporary condition. Sometimes we need to really recharge before we can push on. But push on we should, as long as what we are pushing for is a worthy cause.

Here is what I know to be true about what I can do. I can keep taking treatment. I can do the best I can once I have energy to get myself healthier. I can be the best mother, wife, daughter, sister, friend, etc. that I know how to be. I can continue to pray like it's up to Him and work like it's up to me. I can keep working to be the best HR Manager I can, even if it's only part-time for now. I can keep thinking positive, smiling and laughing. I can keep writing and hoping that my words will help someone else in some way.

Speaking of which, I am currently in the #9 slot in the Reader's Digest contest out of literally more than a thousand entries. THANK YOU and please keep voting!! My goal is to be in the top 10 and be published. I want people to realize that this disease can happen to any old average girl living a normal life. I want to spread awareness, and perhaps maybe warm a heart or two of other survivors to know that they are not alone. And I want them to know that life is good, even with cancer.

So how's that for upbeat? It's the truth as I know it. And for anyone who find it irritatingly positive, I share with you my second favorite quote, "A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort!" Enjoy that!

One last note, a friend of mine is having some followup tests to rule out breast cancer and is asking for your prayers. She will hopefully learn good news next week. In the meantime, could you please all say a quick one to the Big Man upstairs and ask that she is ok? Thanks!

Wednesday, September 14, 2011

A time to harass

Well, if nothing else, I'd say my experience in cancer-ville has made me a bit more assertive. I historically tended to be a bit more on the passive side of life and to pick my battles. For example, I was never one to complain in a restaurant or send food back for fear of the "sneeze-burger". If you have ever read the book "Burnt Toast", that was me. I tended to settle for things, never one to make a fuss, especially with people I don't know.

Lately, however, I am learning when it comes to your health, you just can't screw around and wait for someone else to do the right thing. Robert Wood Johnson cannot make an appointment until they receive my medical records from Monmouth, and review the files. So I was sitting here waiting for someone to send my medical records whenever they get around to it and it was not exactly jiving well with me. As such, I've become a bit of a harasser.

Things get lost in the shuffle, even the paper file of a cancer patient. It's ridiculous, but to some employee somewhere, it's just a part of their daily grind. I guess to them, it's not that important. It's just one more item on their to-do list that didn't get done. After leaving several voicemails, I finally reached someone in the medical records department. She told me the release I signed on Monday never made it to her desk, and until she had that, she couldn't send my records. Lovely! So I had her fax me the form for me to sign it again, and urged her to please expedite the file. She was pleasant enough and said she would make it happen. Even if she sneezed on my file, I don't care because I got what I needed out of her. It only took 7 phone calls from me to make it enough of a priority for it happen.

The HR Manager in me struggles with the obvious lackadaisical approach to job performance. So to each of you, I challenge you to think about who your stakeholders are every day, and think about how your to-do list impacts them. Granted, most of yours will not be cancer patients waiting for treatment, but still, they have needs too. Try not to just let your work become so mundane that the job doesn't get done. They pay us for a reason.

When you become a patient, somewhere along the line you realize you have to become your own advocate. You can't wait and expect others to go the extra mile for you. Some will, but you cannot assume. When time is of the essence, and it's your own health being impacted, your sense of urgency gets heightened, and your motivation to act goes through the roof. So harass if you must. It's working for me.

Does it make me a pain in the ass? Maybe, but given the circumstances, I don't particularly care. At least I am still a polite pain in the ass. I harass with a smile.

Tuesday, September 13, 2011

The hunt for Taxol

Why can't things just go smoothly? One way or another, I will be getting my Taxol, but in the meantime, there is a lot of hassle and uncertainty involved. Admittedly, I am annoyed that my doctor didn't even mention the shortage of the drug until Friday, which was my last infusion of the other drug. Having since done my research, the medical community was notified early summer that this was a problem. I am not sure why she waited, but to hear the words "we may not have the drug we are recommending" didn't exactly sit well. I was in a bit of a shock at first.
 
Once Monday rolled around and the shock wore off, I was in a bit of a panic. I know there is an alternative treatment, but I couldn't help but feel jipped and a little nervous. So with the help of my sister-in-law, I decided not to just settle for the alternative.  We set up an appointment back at Hackensack, and are working on getting one at Robert Wood Joohnson, both seem to have supply. Monmouth as of today, has not one dose.
 
However, my nurse called today to tell me that they secured 2 of the 4 doses I need so far. It's a start I suppose, but it's not enough for me to commit to staying there. I need to know they will have what I need. I don't want to be stuck midstream without the medicine I need. I've come too far and endured too much to have something stupid like a drug shortage get in my way.

I guess we needed an element of suspense to this story. I guess someone felt there hasn't been enough stress just surrounding the whole diagnosis and treatment to date. Personally, I bet to differ. There has been more than enough behind the scenes drama, stress, and struggle for my taste, but if this is part of the gig, so be it. I will keep pushing on.

Saturday, September 10, 2011

I made it through

I am pretty proud of myself. I made it all the way through the wedding and was able to enjoy myself. A big thanks to the 5 anti-nausea meds that carried me through. It was nice to be able to celebrate something positive, and I am so glad that the wedding was friday and not today or sunday. That would have made it much harder. Today required a lot of catch up sleep. Two naps later, I'm going back to bed in a bit.

I am feeling so much more hopeful. I received my last infusion of AC. THANK GOD! It's amazing what hope there is in knowing that hurdle is behind me. I know the next few days will be rough, but this should be the last time I will deal with this particular brand of nonsense. Everyone tells me the next batch will be easier.

I did get some disappointing news on Friday. My doctor informed me there is a shortage of Taxol which is the next drug of my protocol. There is a "sister" drug available, but the regimen is different. Instead of every 2 weeks for 8 weeks, this is every week for 12! UGH!!! Damn pharma companies. They need to free up the overtime money for their manufacturing operations and make more! It's not the end of the world, but it is annoying. I would consider switching hospitals to one that has Taxol in supply, but after two trips to the ER already, I realize the value of being affiliated with a local facility. Please say a prayer that my medical team is able to drum up ehough doses for me that we don't have to switch. The thought of doing this every week until December is daunting.

One overly solicitious note: I was contacted recently by a representative of Reader's Digest. I had submitted an abbreviated version of my very first blog post to them for entry in a contest and consideration for publication. They indicated that they are interested in potentially doing so! How exciting! I would appreciate it if anyone who is on facebook would vote for my entry in the online contest. Here is the link: http://apps.facebook.com/yourlifecontest/content/all-these-things-plus-one

Thanks all. Have a good night!

Thursday, September 8, 2011

Tomorrow is the big day x 2

Tomorrow is the LAST AC infusion. Yippee!  I'd do a cartwheel if I was more certain I wouldn't crash into something! I cannot wait to have this major milestone down. I think of all of the hurdles so far, this is the one I have looked the most forward to. A double mastectomy was nothing compared to dose-dense double drug chemo. Everyone keeps telling me that Taxol will be better. I'm coming after you folks if you are lying to me!

And the other big day is the big wedding! All I can say about that is "it's about damn time!"

I will say, I am curious to see how I manage tomorrow. I am sure it will be fine, but I am considering this "advanced placement" chemo day! I'm thinking attending a wedding reception on the same day of infusion is not for the rookies. Fortunately, I have a lovely survivor who was at my wedding on the day of infusion and she will be there tomorrow to remind me it's doable.

A big special thank you to my Zia for picking a reception location that has the rooms in the same location. I know you picked the place because it's romantic and beautiful, but it also has the lovely perk of being chemo patient friendly. Nice job!

On another note, recent times have been a very interesting study for me into the power of the mind. It's amazing how strong of an influence our thoughts have on us, whether it be positive or negative. I am working on taking control of that influence and using it for good, not evil. The mind can run away faster than a sports car if you let it. But with focus and determination, you can reign it in, and have it work for you. I'm practicing getting better at that every day.

I laughed in the car tonight while running my errands. PLJ had a pretty upbeat play list going. "In the Middle" by Jimmy Eat World came on. I haven't heard that song in a long time, but years ago, it was a bit of a theme song for me. If you don't know it, it's about hanging on tight and weathering the ride, knowing that in the end, everything will be alright, alright...

Tuesday, September 6, 2011

What goes down must come up.

Today was my first day back at work. So much for easing back in. I jumped in with both feet and let's just say that day went very quickly. I did welcome the distraction for certain. It absolutely was a welcome change. The only issue is the pace is much more intense than I recall, probably due to my 2 and a half month leave. But I am not complaining. I am grateful to have the job and the situation that I have.

One thing that amazes me about this whole experience is the wide range of emotions that come into play.  A journey through cancer is way more erratic than PMS or pregnancy hormones. Imagine that!

I am trying to shift my focus back to healing, winning. The week following each treatment is certainly much darker than I am used to, but I do usually come out of it for a bit before the next round. This upcoming round though is different because it's the last AC. It marks another milestone done. I am going focus on visualizing myself hearing the words "you are cancer-free". I am going to will this nonsense to be overwith so I can get on with my life.

I don't want to dwell in shadows forever.

I want to bask in the sunlight without worry of getting dizzy or sick. I want to walk for miles and miles without feeling the strain chemo has placed on my body. I want to sleep at night. I want to not worry that I will miss any of the wonderful life that lives ahead. I want to brush my hair again. I want to be able to diet and eat healthy, not just eat what I can "tolerate" on any given day. I want to feel like me again and not be self-conscious of the changes I have undergone.

Rather than want, I will do these things.

I am going to set my mind to it and keep charging ahead. I know that I have had the best medical care money (or rather insurance) can buy. I know that I am getting the protocols that yield the best outcomes after years of research. I know that I have faith and continue to pray every day. I know that I am the benefactor of many other kind people's prayers. I know that I am a fighter. I know that I am not going to give up. I know that my body is strong and will overcome this challenge. One day very soon, I will be able to say that it's over, and I won. I will be cancer-free, and I will be proud, and I will feel like me again. In the meantime, I am glad to be back at work because it reminds me of what I have done and can do.

Monday, September 5, 2011

The end of summer.

Tomorrow, I begin my work-from-home adventure. I am truly grateful for the compassion my company is showing me. I am hoping that I can repay the service by being productive and making a difference, even if it's from afar. I do realize what a blessing my current employment situation is, and when I think of how I almost left for a different opportunity three weeks before I was diagnosed, I realize yet again that the Big Man upstairs is looking out for me.

I do miss having to think about work. Not that I am excited for some of the drama and nonsense that comes across my desk (and believe me there is plenty coming - I just know it), but I am relieved to have something other than medical details to think about. I wonder if this will make me start to feel a little more like the old me again. I just am not sure. I think that it could help life feel a bit more normal, but then again, I am not sure anything can reverse the way the past 3 months have changed my world. I guess time will tell.

It's ironic how I am returning to work the same time that school is starting up again. I can't quite say this was the summer vacation of my dreams. I didn't get to have time relaxing at the beach. I attempted two trips to the beach in the last three months: one was successful, the other, not so much. I didn't get to have day trips or vacations. I spent much of my time laid up in a bed or on a couch, feeling like crap. I spent it figuring out how to make my body viable and functional, trying to minimize side effects so I could feel halfway human. I pray that all of this was a sacrifice worth making, one which will provide me with many, many years of health on the back end. I hope that instead of being a spectator stuck in a house, this summer of setbacks will allow me to live life again and enjoy such relaxation or fun festivities.

Sunday, September 4, 2011

I'm feeling better

Sorry for the flood of emotion last night folks. I just was a bit overwhelmed. The tears were needed to wash away all the sadness. I'm better today. Hope everyone has a good week.

I actually go "back" to work starting Tuesday. I will be working part-time from home. I'm blessed to have that option. I think having the distraction will serve me well.

"you with the sad eyes"

Ok folks, you might not want to read this unless you feel like being emotional. You have been warned, it's a bit of a downer. As I am typing this, tears are flowing freely. It's the emotion that just I need to get out tonight. I am not able to sleep, so I am just doing my cathartic purge, hoping it will free my mind and let me rest.

We all know that music can be powerful. Often times, it can drum up emotions unlike anything else. There are some songs that I can't even listen to because the emotions are too overwhelming for me to process now. However, there has been a song that has resonated with me throughout this journey. The funny thing is, I haven't even heard the song in years, but it comes to mind often when I look in the mirror these days. The song is "True Colors". What pops into my head is the very first line:
"You with the sad eyes
don't be discouraged though I realize
it's hard to take courage
in a world full of people
you can lose sight of it all
and the darkness inside you makes you feel so small"

The irony is that if I allow myself to get past the first part of the song, it is meant to be encouraging and supportive. Instead, it just sums up how I feel about the girl looking back at me in the mirror. It's meant to highlight hope and beauty that is behind the sad eyes, but I get stuck at the first part. I have yet to find a way to see beyond the sadness looking back at me. So many other people do, I wish I could figure out how to do it too. 

Everyone in my world has been nothing short of amazingly supportive of me. People who I talk to every day, or people who I may rarely see have nothing but kind words. The only exception to that is me. This was never more apparent to me than today. At a family party, everyone was loving, complimentary, supportive and kind, much kinder than I am to myself.

I wish I could view myself in the way others do. I was always my own worst critic, but now, even more so. When I look in the mirror, what I see is sad girl, a scared girl. One who doesn't feel as strong as she truly must be. A girl who doesn't see a whole lot of anything special or extraordinary, and just feels pretty weak and weary from a journey that is not even halfway through.

Tonight, in an effort to relax and get some sleep, I popped in a guided meditation. Most of them knock me out pretty quickly. The focus was on healing, and part of the imagery was a team of people coming to support me and to cheer me on. The imagery of my support group rallying around me flooded my eyes with tears, not exactly the relaxing effect I was hoping for. Those very tears often threaten to fall whenever someone is supportive, kind or encouraging. Partially because I am so very appreciative of their words, and partially because I wish I could be kinder to myself and allow me to see my true colors instead of just my sad eyes. I wish that when people tell me that I look great and I am doing so well, that I could believe them and agree, instead of just thinking that they are just trying to be nice.

I do believe (or at least hope) that when this is all over, I will see myself that way. I am certain that if I was on the outside looking in, I would have the same feelings as others. I just wish I could see through the fog and see my own true colors. Until then, I guess I will just be grateful that others do.

Friday, September 2, 2011

friday night vent

Well, every once in a while, I guess it's ok to get mad. So here's what I am mad about. It bugs the crap out of me that my body is not up to par right now. It bugs me that I can't walk for hours on the boardwalk like I used to. It bugs me that I can ride my bike for miles and miles. It bugs me that most days, I absolutely need to take a nap or I just cannot function.

Anyone who knows me knows that sitting still is not something that I am used to. However, now, I just don't have the physical ability to go and do like normal. I know I will be able to go back to normal when this is over. I remember one of my survivors telling me that she was walking around Shoprite and couldn't understand why she felt so out of shape... Then she realized it's just the toll that chemo takes on your body. I also know that now, she's competing in all sorts of athletic events: biking, running, doing muddy obstacle course things. So I know I will feel normal again, and perhaps even stronger than before. In the meantime, it's just annoying.


Thursday, September 1, 2011

Don't want to miss a thing

Sometimes, it seems like the journey I am on is flying by. Other times, it feels like time stops cold and the end of this nonsense will never arrive. It's a strange feeling when you feel like you are running and standing still at the same time. I guess this is what hampsters feel like when they run on those wheels.

I am almost to the last AC cycle. It's a wonderful milestone because, truth be told, AC sucks. It just plain does. I know it's doing its job because it does quite a number on me. I can't imagine little cancer cells surviving this nonsense.

Given next week is my last AC infusion, it will be cause for celebration! And what better way to celebrate than at a wedding? Next Friday is a wedding that's a long time coming, and I cannot wait to share in that joy with my family. It will be doubly sweet knowing that I will be halfway through my chemo. but that is not the focus of the day. The focus is on those two wonderful people who have finally sucked it up and decided to tie the knot, making a "legal" family of one that has existed for many years now.

Life keeps happening despite treatment. As we all know, life has its up and downs. These past few weeks have been a reminder of this. Between hurricanes, watching friends dealing with their own struggles, my daily battles in chemo, I have to remember that even in difficult times, there are good things. In the midst of chaos, babies are born, couples take their vows, and two year olds amaze us. There is a part of me that would love to fast forward through the next two months, but the truth is, there are some truly beautiful moments that I would miss if I did. So I keep on going, and I try not to miss the good stuff along the way.

I'll steal from good ol' Ferris Bueller: Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.