Thursday, November 29, 2012

An odd turn in my Path.....

It's been a really long time since I updated here.

Things wound up moving very fast a couple months ago.

The short version is I started to have some pain in my upper left chest. I found it odd as except for the first tumor in '01 I've never had pain. So I called my oncologist who had me go in for my scan right away. This was in August.

There was no problem with my chest and no clue why I was having pain. Shortly after that it disappeared entirely. It's assumed it was muscular.

However, the tumors in my liver were not only growing again; there were new ones. And new “shadows”: that is not yet totally formed tumors in my lungs. One in the right and one in the left lower lungs.

They told me that they felt that it was time for me to consider Chemotherapy.

Those of you who know me through this as well as follow me here and my other blog; know that I have been avoiding Chemo for 11 years.

I was told that there really wasn't any other intervention that they had to offer.

Basically; I saw this as two choices. One was to try Chemo for the first time and the other was to keep doing what I'm doing and hope for the best; In the meantime; looking for other alternatives I hadn't heard of yet.

“Doing what I'm doing” is living as healthy as I can. You can find a list of my normal day here.

We made an appointment with the Sarcoma expert at Sloan Kettering Memorial in NYC. Dr. Tap. Apparently he's one of the few oncologists whose career is studying Sarcoma.

When I sat down with him I was under the impression that I would listen to him then choose option two: Keep doing what I'm doing and hope for the best.

I'm as amazed as anyone who knows me to find that half way through the conversation I knew I was going to try the Chemotherapy. Not so much due to what he had to tell me. I'm not naive; I know the risks and chances of Chemo. But I suddenly knew I had to join his current trial; not for my sake but for the people following me on this path.

Call it a vibe; intuition; insanity. I walked out of there fully resolved to undergo this. I'm as surprised as anyone. Maybe more so.

Several days later, after mulling it over further, I called and was scheduled to start within the next couple weeks.

I went through a barrage of tests; finding me fit; “Aside from the Sarcoma you're a very healthy person”. This included a cat scan which found yet another “shadow” in my peritoneum. So... the Sarcoma was truly active.

And so in the middle of October I started my first Chemotherapy. Every three weeks with doxorubicin.

My hair started falling out after two weeks and by Halloween I could have gone out as (a slim) Uncle Fester. I chose to shave my head once the hair started falling out rather then go through that every day until it was gone.

Since then I've had two other treatments. I'm doing rather well considering. The week after treatments I don't feel too well but I rally and feel pretty good until the next treatment. Well... except this week: I came down with a sloppy head cold but it lasted about as long as they ever do and I'm on the mend.

So far there have been no positive changes in my situation. But I'm holding my own and it's early days yet. I'm staying in good spirits and in a positive frame of mind. At least as much as possible.

I do want to say something else; for my sake as well as others going through this or similar.

Back when I was first diagnosed I was both an artist and a teacher of Medicinal and Metaphysical Herbalism. I know a lot of people in the Alternative Health professions. Since day one of my diagnosis I've used Complimentary medicines such as Medicinal Mushrooms and herbs in my healthcare regime. However, I also chose to have the original tumor bed be treated with Radiation.

I got a lot of flack about that. Not only that I was betraying the Alternative Industry but that I was too sensitive physically to deal with Radiation and it was going to kill me not the cancer.

Basically what I want to point out is two things. At least :)

One is no one has the right to tell someone what they should or shouldn't do in their own cancer fight. No one. No matter how close they are. It's totally up to the one doing the fighting.

It's hard to have someone make decisions that are against your beliefs or opinions on what works or doesn't but the greatest gift you can give them is to allow them to make their own decisions. Without judgmentalism or pressure to do it your way.

My message to those of you fighting: listen to your heart. Don't do anything that your gut feeling says is wrong no matter who is telling you to do so.

The other part of this point I want to make has to do with the phrase “Medical Hexing”. Many doctors do this without thinking. When they tell you how much time you have left or what's going to happen next they are planting ideas into the head of the Survivor (I refuse to use the term patient).

I had that happen to me before I'd even left the hospital when the first tumor was found. A doctor came into my room to make sure I understood the gravity of what I had. He actually told me to take that last vacation and get my affairs in order. I've hoped since that day that his motivation was based in good. I got angry and thought to myself that he had no right to tell me if and when I was going to die. Yet it's his words that come back and haunt me in my darkest hours. Even 11 years later.

But.... not only Doctors hex people in this manner. Anytime you tell someone something they want to try isn't going to work; whether it's Allopathic Medicine (Chemo/Radiation) or Alternative/Complimentary.... you are hexing them. You are planting negative thought seeds into their heads that they aren't going to get better if they do as they choose or try something different then what you think is the right way.

I know it's hard when you love someone but you have to allow them to make their own decisions: even if it leads to their death sooner. It's their right to decide.

So.... those of you who want to tell me that Chemotherapy never cured anything; shut up. You don't know that. You don't know anymore then the above mentioned doctor.

It may be this doesn't work. It may be nothing at this stage will work but I'm going down fighting; like I have for the last 11 years.

And if it doesn't work I'll look for the next thing to try. Until the end.

And until that time I'll be having a great time; living well and being happy, and living healthy.

I'll keep updates here as I progress.