How are you doing?

As I have talked with friends and acquaintances lately, I've seen a common thread in our discussions. They of course want to know "how I am doing."

This becomes a difficult answer for me. I have always been someone who is very open. And I like to be truthful. If someone asks, "how are you?" I can't just reply, "great!" if I am in fact feeling miserable. So, how am I to respond? Do I go into any detail that our greeting time will allow or do I shrug off the facts and seriously downplay how things are?

Most of the time, I just downplay everything. It seems that the majority of people want to hear only happy positive news, anyway.

As I have been coming more active in my role as an advocate, I find that I want to display the lingering affects of cancer, both physical and mental, in a truthful and informative light.

So, how am I, you ask?

According to recent tests and doctors visits: GREAT! Couldn't be happier about not seeing any signs of cancerous cells. Everything is still clear and A O.K.

Aside from that however, the tale is a bit more grim. Not depressing, but still not shiny happy.

Number one being that I have chemo brain. Boy do I have it! Chemo brain is a real thing. It's not an excuse to pull out the cancer card, but I certainly DO use it! My concentration and ability to multitask or have more than one train of thought going at once-gone. Does not exist. Sometimes I will just completely have a blank stare on my face trying to grasp a hold of the thread of a thought, desperately clinging to it as it wisps away.

With chemo brain, I also have lost a lot of memory. I completely forget about conversations or tasks until far far after the fact when having forgotten about it has now become a problem. It's really hard. I'm working on it. Also, a lot of non-pivotal moments from my own history have gone away to the wastelands as well... I can't remember a random night years ago or even someones face sometimes.

Another lingering affect from cancer would be my left side. I still get pangs of pain in my ribs where they had to remove some during my surgery. Coughing can still be painful. Not to mention, my left arm/shoulder is still really weak. I've been lifting weights and going to a gym for quite some time now, but my left side still can't carry that much weight. I'm lopsided. My right side didn't weaken as much as my left but it has recovered much stronger than the left. There are times when I have to use my right arm to lift up my left.

My hair is a more trivial concern, but it still is a lingering affect. It has been growing SO slowly. And now my hair is extra thick near the top but not on the ends. It makes me look like a mushroom head. Not to mention, this new hair is kinkier and coarser. It frizzes really easily. So, I have to brush my hair more frequently and longer just to smooth it out. Kind of a pain.

Aside from those physical things, there is a lot of mental repercussions from having had cancer.

Any lingering cough, twinge of back pain, oddly colored bodily fluid.... This starts messing with your brain. You think, "could this be?" You know you're most likely being irrational, but then again....

Not to mention that I've been struggling with my diet and exercise. I'm pretty positive by this point that my weight and diet were the cause of my cancer. It is so fundamentally important that I lose weight and eat healthy. However, this has been, and always has been, a giant struggle for me. I know a lot of stuff. I've studied and consulted over and over again on proper diet and exercise. And yet? I still can't get the hang of it. Curbing 27 years of bad habits is extremely hard. This weighs on me every day. Every cookie I eat, the back of my mind says, "cancer recurrence" and yet I still eat it....

Since I went to OMG!, I have conversed more with cancer survivors than ever before. I LOVE IT! It's so great feeling normal and having that support system. However, that also comes with consequences. I have friends who are being diagnosed with second cancers, who are still ongoing treatments and struggling with their own battles. It keeps possibilities of recurrence near the forefront of my brain more than anyone might think.

And to really top it all off, my stress from financial burdens, which will never end, ever, has gotten exponentially high. I will be having frequent tests for the rest of my life. Already the bills are piling up without me knowing a way to resolve it any time soon.

To end this long blog post, I just want to say that I hope this helps you understand how the cancer specific question of "how are you doing?" is no easy answer ever. But even among a high volume of ever increasing concern, I can say this: Life is good. I am on to bigger and better things and am striving every day to take control of my life to mold it into the experience I've always wanted to have.

A Voice

Hey, all. So, I did a little revising, updated the look of the blog. (Still trying to navigate the blog world with how to make it look exactly as I want).

Sorry I took such a long hiatus. I'm sure I've lost almost all of my readers. I think I went through a phase where "it was over." I felt like this blog had become not about my life travels, social events and turning points, but more about my journey with stupid cancer. After surgery, after my doctor said, "go home, see you in six months" I kind of took that for what it was. Forget about this journey and don't worry about a thing for another six months.

I was wrong.

While I couldn't forget what had happened to me, what I went through, it seemed to be talked about less and less. It isn't until now that I realize I wanted to talk about it MORE. Here I was, finally healthy, my mind clear and free from chemo and fatigue, and yet my voice seemed squelched. I'd jump at any moment to share my story and let someone know what I went through. It made for some unwise times of letting someone into that place in my heart that is so sacred to me who didn't respect it. I had to learn to safeguard the more intimate thoughts and events for those who mean most to me all the while relaying my story as often as I could.

I just went to an event in Las Vegas put on by Stupid Cancer Dot Org. The OMG! Summit for Young Adults. This summit was amazing. Not only did I get to enjoy a "real" Vegas experience (Clubbing, free drinks at the bar [diet coke for this lady], famous people, Chippendales, the night life), but I met 550 other young adult cancer survivors!! It was amazing to share 3 days with others who 'get it'. I heard so many stories, shared much laughter, anger, and tears with people who've been run through the mill. Yes, I had fun. But I also walked away from the classes, the forums, the mealtime mingling, with a new outlook, a drive. I came away feeling like I needed more.

Yes, I don't have cancer. Yes, MANY people have been through so much worse. (I realized how very 'lucky' I was during my treatment). But my journey isn't over. It's only been one year. There is still a high chance of recurrence. I have another kidney, after all. I still deal with late-affects from chemo, surgery and the cancer itself. I still have to muck through the mess that is health care, health insurance.

During the summit, Wendell Potter spoke to us. He was the keynote speaker. This was probably when I was my most angry. (Although, the 'macho' guys annoyed that us 'cancer patients' who were getting to cut in line for the club ahead of them made me upset too. Yeah, cause we chose to have cancer just to get into the club a few minutes earlier than you.) Wendell Potter used to work for the BIG health insurance companies. He had his hands in the politics and dirty work for a long time, until he came to realize how wrong it all was. He shared with us a story of a young girl who, because of her cancer diagnosis, needed a liver transplant. Her parents had insurance, they had the coverage for transplants, and the best news, they had a donor. Because of one person on an insurance committee, they denied her the liver. They deemed it not necessary. It was not profitable for the company. The parents fought. They got media involved, they wrote letters, they petitioned. Too late. Their daughter ended up dying because she didn't get the transplant.

Mr. Potter went on to talk about the corruption in the industry and immediate need for health care reform. I found myself wanting to stand up, put my hand in the air and shout "AMEN!" at the top of my lungs many times. I feel I was/am a victim to poor health care.

After the summit, I really felt like I need a plan. I needed to find out how I can do more for those young adults navigating the cancer world, for those friends and family of mine who need to know that they CAN get cancer and how they can look out for signs of it. So, I decided to revamp this blog. I also decided to start another blog. Click here. This is where I will post news articles, websites, information, data, and ways for others to know what cancer is all about and how you and I can take a stand up to it.

I'm back. I'm here to stay. I have a voice. Cancer may have taken a kidney, but it didn't take me. I am bringing awareness by bringing discussion.

Please, spread the word to your friends. Everyone needs to get informed.