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.

Newest Scan results

I'm late with this... as usual. One thing about feeling healthy is one doesn't spend as much time sitting in front of the computer. Which is a good thing! Though not so good for blog updates.

My last scan result was, again, good. All of the tumors that were embolized (Not sure if that's the right term for past tense embolization :D ).... are shrinking. The ones that had the radio ablation are doing nothing. The way I understand what he was saying is, from looking at the scan you can see where the tumor *was* and since it's not doing anything it's assumed it's dead but not re-absorbed yet. Not the most technical explanation on my part but it's the best I can.

So very good news. I'm continuing on my diet/lifestyle; though I did fall from grace a bit when family visited but not really bad and I'm back on track.

When one feels one has to "treat" one's self it's ok: but just keep in mind that "they" are right when they say it can be hard to get back to being strict again. So one has to make sure one understands one may have to be tough with one's self as it seems one step off the path can re-start cravings.

That evil Sugar is a bad one for me and cheese. I had both and I had to fight their Siren Call for several days after. I won. :)

I saw the movie Fat, Sick and Nearly Dead. If you haven't seen it, do so. If not at that link then Netflix has it. Very inspirational.

September is my next testing session. In the meantime I'll try to post some of the ideas, insights and advice I've wanted to share here. No promises as it's gardening season! (have to update the garden/studio blog next!)

Update and my revamped health routine

Sorry this has been awhile....

Since I last wrote my surgeon and oncologist went over my scans. This was 4 weeks after the Embolism I had to see if there is any change with the tumors in my liver.

Two showed signs of reduction in size! And the rest have done nothing. When you take into account how fast LMS grows; Nothing is really good.

They decided that for now the best thing to do is also Nothing. Watch and Wait. Something I've gotten good at... sort of... over the years :) They said they could go in and do another embolism but that they'd rather give me a break from surgery.

So on the 25^th of this month I get scanned again. And we see, again, how things are going.

Which brings us to my new full time job: Me.

This is an average day:

~ I get up in the morning and if I'm not in a hurry I'll meditate for ten minutes.

~Then I cut and juice wheatgrass and drink a 1 oz shot. I've been growing my own and have a little set-up in the kitchen. It's a learning process but it's going pretty well.

I do this first as you drink it on an empty stomach and wait ½ hour.

I've been supplementing what I can't grow with powdered in the smoothies I discuss below.

~ I put the kettle on for hot water and lemon and my green tea for later. After ½ hour I sip the lemon water while I do the following:

~ Then the veggies and fruit for the juice and smoothies are washed (even if I wash some ahead there is always some that need it now) and then processed. I usually wind up with a couple glasses of both. Smoothies for breakfast and lunch and the juice for in between.

~ Then the juicer and blender get washed off and the kitchen cleaned.

~ I then drink my warm lemon water (cleans out the digestive track and is a mild liver flush)

~ Then I can have my Smoothie. And relax and drink my tea.

~ ½ hour of Yoga.

~ ½ hour healing visualization tapes.

By this time at the very least two and a half hours have gone by and I then try to be productive. House work, garden or the studio. Write in my blogs. :)

~ ½ hour walking; preferably outside but if I can't on the treadmill.

~ Smoothie for lunch. Followed by my vitamin supplements.

~ Nap (usually another tape to listen to before I fall asleep). I'm trying to listen to healing visualizations and guided imagery at least twice if not three times in a day.

~ Time to be productive; usually dinner prep which has been a huge salad full of greens, vegetables, seeds, nuts and home made vinaigrette.

~ At this point I watch TV, read or play on the computer.

All throughout the day I drink the veggie juice and lots and lots of water. I also take Medicinal Mushrooms throughout the day and plan on increasing them into my diet as food and tea. I have friends who send me 'shrooms from Vermont but I want to start trying to find my own. I live next to a forest so, while not easy, should be doable. And I'll get exercise walking around out there.

While much of this I was either already doing or partially doing before now, the last month and a half I've been pretty diligent.

Additions to what I'd been doing are, as I said the Juice and Smoothies but I've completely taken out all sugars. Not just white but all of them. Yes; even the Raw Agave everyone is putting in everything these days. I believe this has made a huge difference in my energy and lack of headaches. And sugar and cancer are not good for you.

No dairy. I had icecream on my birthday a couple weeks ago. Hormone and anti-biotic free and all local; but I could tell the difference in my sinuses the next day. And the sugar made me dump my energy as well.

No white flour... actually no flour. No bread. No pasta. On rare occasions I'll have pita at the Middle Easter Restaurant. Once so far.

Very little meat. Some seafood if I'm out but none at home.

In case you're wondering, I gave up coffee 11 years ago when I was trying to figure out why I didn't feel well. I do miss it; but usually only when I smell it brewing. Fortunately I love all kinds of green tea.

Has it been worth it?

I won't know about the tumors until after June 25 but aside from that: Yes.

I feel great. My skin and hair look great. Actually my hair hasn't looked this great in years. I wish I'd started living like this before I got the LMS. But better late then never. :) (take that as a lesson)

You have to figure in one Smoothie I'm eating at least four or more servings of vegetables and a fruit.

Twice a day. Then about the same in the juice. Then the salad. I've read that one ounce of Wheat Grass juice is the equivalent of 1.5 servings of vegetables. So add that in.

I believe I don't get hungry because my body has gotten everything it needs already from the Smoothie and doesn't need to send me out to “forage” in the fridge or pantry in the hopes I'll find some nutrient I'm not getting.

Same reason I don't get cravings. I haven't had a craving in over a month. Except for Veggie Chow Mien. No clue why. I had some and now I'm over it.

Yes it takes time out of the day. But if I pre-wash veggies for a few days then the morning routine isn't as long. I've found that no more then three days ahead.

I have Kris Carr from Crazy Sexy Cancer to thank for helping me to fine tune all this. If you haven't gone to her site or read her books I recommend it. You don't have to go on as strict a regime as she promotes; just start making a Green Smoothie a day and see where it goes.

So as of today: I'm feeling very well. Really well actually. Doing lots of gardening and have gone for a few short hikes into the woods.

Odd as it may seem; I'm feeling better then I have in years.

I'll post again after the 25^th and we see what my oncologists have to say.

Cat Scan Day

I've not been writing here since I first created it... nor my other blog either. I've been slacking :)

I have worked a bit on my time line but it needs a bit more and then I'll post it as a page here and link it to the side. Hopefully ----------> that away. :)
(it's <---------- that way :D)

Mostly I've been keeping busy.... I tend to go inward before tests as well as before and after treatments and since there have been a lot of them in the last year I've been inward a lot.

This isn't a bad thing mind you; as I said I keep busy and stay as positive as I can.

Today is the scan following the embolization of my liver 5 weeks ago. I see the surgeon on Monday and he and his colleagues will see that it worked; and the tumors are dying and we can decide the next step. Which would be to do the same thing to the rest of the tumors in the liver. (this is intentionally phrased this way; in a positive manner with the end result I want; rather then saying things like "hopefully" and "maybe".)

This is the first time I'd had this procedure. When the first two of the tumors showed up in early 2011 they removed them with radio ablation.  The first one had a slightly difficult recovery as they'd annoyed my diaphragm but the second, amazingly, was totally pain free. I mean totally. I didn't even need a Tylonal.

As you'll see in my timeline (when I finish it) I and my medical team have chosen not to use Chemotherapy. While it had been suggested by Dana Farber back in 2002; the research at that time showed little if no good results. Today they have fine tuned it further to specific drugs but still not in high percentages... so I'm waiting and hopefully, first; I will never need it. But if I do it will be when we can't find an alternative.

I was fortunate to find really good oncologist right here in sleepy Berkshire County MA. (though in the beginning I went all over the place talking to Sarcoma Specialists). Including my radiation oncologist: the first thing he said to me I wasn't going to die. He was the first oncologist I'd met who ever said that. (Medical Hexing is another subject for another post in the future; but beware allowing things even doctors say to penetrate your Spirit and resolve)

Historically (again referencing the promised timeline) the tumors that have shown up in my lungs, fatty tissue on my waist line and in January 2012, two on my spine, were removed with resection (surgically removed).

The original tumor removed in late 2001 and the 2012 spinal ones were followed up with radiation. Another technology that has evolved a lot in the last ten years.

I'm actually feeling well. In another post in the future I'll discuss things I have done in the past and present as far as lifestyle changes.

The good news for those of you recently diagnosed and who find your way here is that I've been living with this for almost 11 years now. I was originally told to (verbatim from one doctor) "Get your affairs in order and take that last vacation". This is one of those times where you really want to prove them wrong. :)

So now I'm waiting for Monday. They various oncologists get together on Wednesday mornings to discuss their current patients, including moi, so historically I probably won't hear anything definitive until the end of next week.

This is where being Zen comes in. One can't allow this to get to one; the waiting that is (or anything else for that matter). I strongly believe that if you allow yourself to live in a state of fear and anxiety it effects your physical state as well as emotional/mental and Spirit (however you define the latter). It doesn't help the waiting; it makes it worse.

I'll post here what the outcome is and the next step.

Becoming a Necessary Warrior

I am a Survivor.

I am a Warrior.

I never saw myself in this light until just over ten years ago when I was told that death was imminent. That the presumed benign tumor they'd removed was really Leiomyosarcoma. LMS.

I was told it was rare and untreatable.

And I would die soon.

We always wonder how we'll react to such news. We fear it. And with reason. It's frightening to be told such.

This blog is dedicated to my story of the last ten years as I defied the odds and statistics of that time.

It's my hope that those on a similar journey will find inspiration and hope. And a place where you can ask questions and those that join here with us can help find answers, support and information.

I intend to discuss what I've been through, what I've learned about dealing with this and keep an ongoing journal as to where it goes from here. (it will be sometimes sporadic as I on occasion go through treatments and surgeries, not to mention regular life stuff)

I've created a time line that tells my story. I'll publish it here as soon as it's done. There is a lot there: it's been over ten years.

While LMS is still rare; it is more treatable then they thought back then. If you are one of those that join this fight; know that. Embrace it. If you are told otherwise: keep looking for medical people that say otherwise or at least are willing to help you find solutions.

I went through a journey that at first seemed bleak and pointless until I found doctors and supporters that had vision and true compassion and told me I wasn't going to die from this. Not now at least. Not imminently.

We are still fighting that battle. I don't know for how long but in the end I'm not sure that matters. I've learned to make each day count. Who knew being told you are going to die can teach you to live?

I didn't die then but I still fight Death off.

Because I am a Warrior ...by necessity.

So are you.