Thursday, February 6, 2014

Living Life Tour Take 2?

As I sit here, the wind is howling outside. It was an icy Wonderland outside today. A gorgeous day, best spent indoors.

I slept a better part of the day, as the Avastin treatment I got yesterday knocks me out, and all I want to do is sleep. It didn't help that I got news yesterday that my tumor marker number is up.

I was diagnosed with ovarian cancer in May 2012. After months of chemo, I was deemed cancer free in December of that year. Only a few months later, there were signs it was back.

The doctors and I took a watchful approach, and in October I was told things had gotten worse, and that the only surgery that may have been an option may not be an option at all. Chemo was a possibility, but in all likelihood, once I got on it, I would never get off.

Rather than seeing chemo as an enemy, I worked diligently to have it be a friend. I never once have said I am "fighting cancer."

But even as a "friend" and ally, it took me away from myself. I did not have much of a life. I cannot at the moment see doing that again. What is the point of life if all I am doing is existing?

I decided from Day 1 that I needed to blog. Now I have over 1000 blog entries and over 200 videos. I have had visitors from 50+ countries, and over 30,000 page views.

I have been determined to share my story, and the need grows stronger the more stories I hear of people who are in need.

Organizations that focus on cancer rarely focus on the individuals dealing with cancer. There are so many issues left unaddressed.

Many people dealing with it don't discuss it, and given the stigmas, I do not blame them one bit. But the thing is that many people have no clue what people really go through, due to the public glossing of the issues.

In October of last year, when I was given the bad news, I went against the doctor's suggestions, and did not do chemo. I did not do Avastin.

I left the office devastated, and feeling hopeless. Within a couple of days I pulled myself out of the abyss, and got determined to take a cross country trip I did not even know if I would survive.

But I had to do it. It felt like my life depended on it. I went over 5000 miles, most of them by myself.

I took my time, and met a lot of people along the way, and had such incredible conversations about ovarian cancer, cancer and life in general.

Amazing things happened. People wrote about me in their blogs, and told me how they were touched and transformed by what I was doing.

I blogged, vlogged, and did my radio show. I did not get enough money for the trip, so I had to charge most of it. Already in a significant amount of debt, it was the last thing I wanted to do, but what if that was my only chance?

I absolutely had to go.

And so I did.

27 days.

I felt so good. So alive.

I came back, and went straight to the doctor's. My tumor marker was lower! I was so happy, so relieved.

I wasn't going to do any more treatment. But then just weeks later, the number jumped significantly, and I was reluctantly back on Avastin.

After one treatment, the number went down, but now it is up again. And, given what I know, there is a part of me that is scared.

I knew when I was on the road, I needed to get back on the road again. What is happening now is re-affirming it for me.

I am writing this in the hope that I will find someone or someones who have the ability to help me make that happen. I have a 20-something year old niece who has listened to me, and has shared my story and information with others, and would plan to take the trip with her.

I would love for it to be another lengthy trip, but would just love to get out among the world and people. It has been very tough having to come back to a life of barely surviving, and running out of money.

Being in a situation like this can be a full-time job. I am wondering if my life again depends on me getting out into the world.

I know I should try to "sell" people on the idea of this trip, and that often people will invest when they see personal benefit, but the thing is, all I got is me, the message, and my desire to help people.

I also have my blogs, vlogs, and radio show, and am willing to work in conjunction with anyone who could and would step up to help make this happen.

On Relatingtocancer.com, you can see more about me and my story, as well as info about my first trip. You can also see info on my Facebook page facebook.com/relatingtocancer. Vlogs are included in the blog, but not all. If you would like to see my complete collection, you can visit GotStressGetRelief.com.

There is so much more to me. There is so much more to my story. I hope to be able to continue to speak for those who are unwilling or unable.

Some stats say 1 in 2 people will be affected by cancer. We need to do better for those who are affected. The world is already hurting enough, we do not need people to feel isolated, alone and helpless when the difference between helping and not might just be an understanding of the realities faced. The less scary cancer seems, the more likely people will be willing to step forward.

I do not know how much time I have left, but I would like to spend it making a difference in the world full of amazing people who have yet to discover their magnificence. My writings include much about cancer, but they are so much more about life. So much of what I talk about has parallels to other life circumstances.

If who I am, or what I have said, speaks to you, please consider helping me make this happen.

Thank you for your time.

If you want to help financially, click this page for donation options (including one that is tax deductible). The same page will explain my last trip, and answer many questions that were asked. I am planning to create it anew, perhaps with another video to update for where I am now.

(As I type this, there is a part of me that is feeling helpless. It is asking the question "Why bother?" It is reminding me of how futile it seems many times when I ask for help. That part of me just wants to go back to bed and sleep. I share this piece because I suspect there are some who may appreciate knowing how I truly feel.

For those who can identify with it, there may be something in it for you, too, to know you are not alone, perhaps? Although knowing you're not alone on a ship that seems to be sinking isn't all that reassuring, is it? 

Above all, I share because something tells me to...I really would rather not because I do not want a pep talk. I do not want to be told to "stay positive." I do not want to hear I am being a victim. 

I do a lot better with my emotions and feelings when I address them head on. They tend to have less of a say when I do that. Things unexpressed gnaw at me so much, and keep gnawing until I get it out. It is one of the reasons why I feel so compelled to write and share what I do. 

While it may seem I want to do it, I really don't.

Someone suggested yesterday that I perhaps not be as public. The thing is, I don't feel like it should be anything less than what it is. I don't know who reads this blog, or how, or if, it makes a difference, but with all of the visits, I am going to guess spoken, or not, there is some benefit. At least I hope so. 

It really does suck at times, though.)

Back to the scheduled programming...

If you want to help in other ways, share this blog with others. Share my story with others. Help me share my story, get it out into the world. It isn't just "my" story. It is the story of too many people. Even though I am talking about me, this is about a lot more than me. There is so much relief that I discover when I talk to people who can identify with what I am going through. There is relief because there is someone they can not only talk to, she understands.

People have told me they've been touched by me, and I am glad that I could be in the world in some way that would touch and affect another. I hope to be able to stick around, and I would appreciate your help in helping me to get out and be able to do more of what I did back in the fall.

That trip was not about death. It was not about dying. It was about life, and living. It was about so much more than cancer. I am about so much more. And it seems that my situation around cancer and how I relate to it has the ability to change the way others relate to their lives. If you agree, or see value, I hope you will help me to continue to do it.

Once again, I am feeling like my life depends on it.

Thank you.

1 comment:

  1. I'll definitely give you what support I can. The first trip turned out to be exactly what you needed, and, apparently exactly what several others along the way needed. I think a second will be as well. This time around I hope you can find a way to engage ALL of the communities you've touched and with which you've been involved. I want you to have as much support as is humanly possible for this. You certainly deserve it!