The Chemo adventure ends.... and new adventures start.

It's been over a month since my last chemo treatment.

I have to say it's one of the harder things I've ever done. And if you look at my time line on the left; that's saying a lot.

It was hard mostly due to my hemoglobin and platelet counts crashing, which required transfusions several times.

But by the end of about three weeks after the last one; I was feeling almost pretty good. :)

The next phase is with Votrient. Once I was mostly recovered from the Doxorubicin I started on one a day and every week I add another. This Saturday I start the 4th and final pill and continue on that for an unspecified amount of time that depends on the results. So far it's going pretty well.

The results after the Doxorubicin were pretty much what they were over the course of the treatment: a few tumors had some small growth; many showed no change. So while not perfect results they aren't bad.

I'm also taking Metformin. Yes.... that's traditionally a diabetic drug and, no, I'm not a diabetic. Not only does it suppress the glucose production in the liver (less glucose in the blood means less to feed the cancer cells) but it does things like targeting mitochondrial metabolism in cancer cell and kills mesenchymal stem cells in cancer cells. No.... I don't totally understand that either. (I can forward a post I was sent with some references if you're interested; just post a comment*)

Dr. Deng (One of the Integrative Medicine doctors at Sloan-Kettering Memorial) put me on it. As well as some extra nutritional supplements added to what I was already doing.

One thing I learned going to him is make sure you double check and compare effects for everything else your taking; herbs and supplements with your medical team to make sure nothing interferes with each other. For example; high doses of anti-oxidant vitamins can counter act many chemo drugs. Some herbs, like Turmeric (Curcuma longa) does the same. As well as I can't eat grapefruit with the Metformin.  

The other thing I'm doing is I'm on a very low carbohydrate diet. Not with the concept of loosing weight but, again, to keep glucose production as low as possible (again with the idea of "starving" the cancer cells). So I've incorporated that into my diets/lifestyle that I reported on in an earlier post.

One misconception about my diet that's come to my attention is that I'm a vegetarian. While I don't eat a lot of meat/poultry or fish I do eat some. Organic and raised as close to home as possible.
I've never done well on a strict vegetarian diet and, yes, I've done that in the past for years at a time.

That's not to say that you shouldn't be or try vegetarianism or veganism. If you feel that's your path and the best diet for you; go for it. Just research the best way to get all your nutrients.

I think the confusion is I recommend reading Kriss Car's books. I believe in her totally but everyone is an individual. Some people thrive on one diet/lifestyle; other's on another.

Make your own choices on what feels right and helps you Thrive.

So that's the recent update. I have a scan in about 5 weeks or so. In the meantime; Spring is right around the corner! Maybe I'll get to work on my studio/garden blog. :) (my new studio is almost done!)

* This blog had been targeted by Spammers recently and so I've had to put the verification window into the comments. I hate those things but it's the only way to totally stop them. Otherwise, I was getting easily a dozen emails a day alerting me they were trying to post. Why this blog and not the other I don't know. So I apologize for the inconvenience: please comment despite it, if you please. Thanks :) .

Scan Results

Some good news:

When I first started the treatment at SMK I was given a Cat Scan for a base line.
Then after about two months I was given another which showed a 10% growth of the tumors. Slightly depressing to say the least.

Last week I had another scan and it's showing very little growth, no growth and some shrinkage of tumors. While not a big shift; it's one in the right direction and is encouraging.

As I write this I have one more treatment left in a little less the three weeks and then we'll decide what the next step is.

I also met with the Integrative Medicine doctor: Dr. Deng. I liked him a lot. He liked all the things I was doing and had some good insights into not only dealing with side effects from the treatment but my lifestyle and health regime.

I think the most profound thing was finding out that the medicinal mushrooms I was taking weren't made from the growing mushroom nor were they extracted by water; both aspects are part of the traditional methods of using them. File it under read the fine print. The ones I've been taking were made from mycelium and grown in laboratory conditions rather then the whole mushroom and grown on wood. So I'm switching brands.

So... that's the update on this new chapter in my journey so far.
I'll report back when I decide on the next phase.

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.