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)

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!"

short but sweet

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

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.

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!

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.

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.