To Chemo or Not to Chemo....that is the question.

Yes, they had told me....CHEMOTHERAPY. They told me their numbers, they showed me fancy charts with highlighted arrows and lines so I could find my place in their world of numbers. My oncotype test, a test that looks at gene expression and then puts that info in to some fancy algorithm that then calculates your score of recurrence in 5 years, was 44. "To high" my doctor said, "Not to do something about"....A 30% chance of recurrence, even with 5 years of tamoxifen a daily pill I am supposed to take which causes bone aches and liver damage and just overall weirdness in the body, not to mention birth defects if you have a baby. Anything that causes birth defects, is probably pretty out of tune for the body in general, no?  Then they plugged my numbers into a computer to show me how each different type of chemo would work ....this chemo gives you this number, this chemo gives you this number, this chemo may cause kidney damage, liver failure, a bald head, no periods, possible infertility and massive retching, but look your score went down 4% for rate of recurrence. My question was,...where are these numbers coming from and how do we know anything else about these people besides they were doing chemo?

I mean, if one woman is doing greens and herbs and started Reiki and also does chemo.....how do we know it isn't the Reiki that cured her? And how do we know that the people who did have a recurrence weren't out every night at the local bar slinging back martini's and eating chicken wings? How do I know if anything has even spread if my insurance won't even approve the Cat scan to check my whole body? And why does that same insurance approve the chemotherapy so fast?  Aren't these values a little off?....Lets approve the harsh treatment, but not the test that could possibly show if we need the harsh treatment to begin with. Excellent logic kids. I hope you at least make some money from the drug company somehow.....they certainly have enough of it.

Then I thought, well maybe he is right, maybe I do need the chemo and its just one of those phases in life that you may not like, but it just is what it is. So I went in again to his office and sat in the nice chair and waited for him to come in. The big evil doctor....except I actually really like my doctor and actually joke around with him and find him to be a generally nice, caring human being.  He likes to travel, that's cool, he has these funky Mexican rugs on the wall and art from Colombia and pictures of big elephants that I think he found somewhere in India.  And he wears these light yellow linen blazers or he wears a colorful shirt...he has flavor for a middle aged New York doctor. I like that.  He is also a toucher, he likes to pat my hand in a fatherly way or take one of my hands in both of his big hands, I mean, he knows how to work the fatherly charm with a little twinkle in his eye, kind of on the edge of flirting but not like in an offensive sleazy way, in a cute doctor sweet way.  He's got it down.

So he goes over the charts and graphs with me again, the highlighter comes out, he highlights my place on the graph.....he sits next to me and writes out what my platelets need to be,  he says I wont loose my hair and that he can prescribe me anti-nausea medicine and synthetic marijuana that comes in pills. Oh wonderful, more drugs!  I joke about wanting the real thing and will it get me stoned like that, and he laughs and says maybe if you put some Grateful Dead on....we laugh....its funny. Its nothing this chemo stuff, its like smoking a joint and listening to some Grateful Dead. The chemo room has snacks and t.v's and you can listen to music while they inject you with the stuff, you can watch CNN and snack on graham crackers and snapple.  "I don't want you thinking about it" he says, "I want you working and living your life and not thinking about it at all, don't read that stuff on the Internet, it will drive you crazy". Oh. Okay. I should just like turn the other cheek and hope for the best? Not make an informed decision? Like maybe if I was informed I wouldn't do it.  He hands me the forms to sign.  Then he mentions, and I still cant figure out why he mentioned this to me, "you know the same people who created chemical weapons, created chemotherapy" like agreeing with me it was a freaky situatiThere happens to be a long list of side effect at the top.  I ask him about them because he doesn't mention them. HE DOESN'T MENTION THEM...????

I start to read them, possible kidney failure, possible this, possible that.....as I ask about them he crosses a few off that don't apply to my special chemotherapy drug mixture. But he still doesn't talk about the other ones NOT crossed off.  Well, what about those? I ask. But its really like he doesn't want to talk about them. And some part of me doesn't want to either. Its so much easier to sign the form, smile and joke, go out and live my life, stick out my arm on the day of treatment and watch CNN while they download my body with toxic chemical warfare and just bury my head in the sand.  Its like he was waiting for me to take the hook, like waiting for me to just say, yeah okay, I don't need to know about the side effects, they have snacks in the chemo room and after I will be stoned, no problem! This is no big deal.  Maybe this is the best way, a spoon full of sugar makes the medicine go down....Except, we still don't know if the chemo is medicine and if it will stay down and not come back up in a big ugly way. ha ha.

At that point in time, I just want relief and for this to be over, so I sign the papers and figure I can renege later.....instead of sitting there, feeling like he is waiting for me to just sign already and stop asking questions. Some part of me wished I could just trust him and he could be my hero and this could all be over and I could move on and live my life...but the thing is, something in side knows....I just don't think I can stick out my arm and accept that stuff in my body......I don't care how comfortable the chemo room is and how much I like my doctor and how nice and stoned I get....something in my gut won't give.  I walk around for a week telling people I am starting chemotherapy in a week on Tuesday.....I do this alot. Make a decision and change my mind and this was a perfect example of a time when I did that but now understood why. You make a decision and then you walk around and wear it for awhile to see how it feels...like buying a dress and wearing it at home but then later, taking it back to the store. I was trying chemo on....seeing what the universe thought, seeing how life felt with chemotherapy on my schedule. I had an appointment for chemotherapy...hmmm.....what would I wear....would I go to dance class that night? Would I go alone or take a friend? Should I do a ceremony before I go in, like bless the drugs and light a candle....play chant music while I let it come into my body...what would it feel like?  Would I start to loose hair immediately? Or would it just thin slightly like he said.

The Sunday before that Tuesday chemo appointment I had a call with a "medical intuitive", a guy based in Florida, who a friend who I trust, had referred to me.  This guy felt the chemo was no good....that women were getting over treated and that breast cancer was actually a result of the Epstein Barr Virus that we were getting from the vaccines that we get as children.  His theory, and supposedly the man "hears spirit" was that the vaccines were created so that it actually give us cancer....keeping the "cancer machine" running. Pretty out there stuff. But I must admit, some part of my intuition was in tune with it. He recommended I eat ALOT of fruit, which was counter to everything all the other holistic people had been telling me, that cancer feeds off sugar and I needed to stay away from it...including fruit, except for berries.  The medical intuitive also prescribed some different supplements and tinctures, some mushroom stuff and some other stuff...and more stuff. My god if I take anymore stuff I am going to explode. Then he said in regards to the chemo"You know, whatever you want to do, I support you, but you should really think about it". He said he would call some of the doctors he works with and ask them about my particular case and get back to me. He charges me $300....I go to the beach with my girlfriend and eat french fries because I am so confused...with mayonnaise.  Well, he did say potatoes were okay. And onions. We had onion rings....bad cancer diet day. WHO is telling the truth? The doctors or the holistic people? I feel pushed and pulled. I lay on the beach and try to commune with god but my mind is racing.

The next day, I wake up crying. It is Monday. I do chemo Tuesday. I don't want to do chemo and I feel so helpless....I cry. How do I get out of it? My parents will kill me, I signed the forms and if I don't do it what if it spreads and I die? But I really, just cannot do it....So I get up and I pray and I ask God and the angels, I say "I need a really REALLY clear as day sign, because you know how I get and can't make decisions about things, so its gotta be super clear, the writing is on the wall  kind of sign....please?". Ten minutes later the medical intuitive calls and tells me all three doctors he calls thinks chemo is over treatment for my case and I would be fine with holistic therapy...We talk for 45 minutes and he only charges me $40. He tells me he held off on 3 other calls to call me and he has a special feeling about me....hmmm....I bet he says that to all the girls.  I email the chemo doctor.  I am just not ready I say, I would like to "postpone", but I fail to mention "indefinitely",  I keep that part for myself. 

Egg Retrievel and NEWS!

I apologize for not writing more....some times the days come and I feel so overwhelmed in trying to remember all the things I need to do, I simply can't find any words. From now on I am going to get up early and write with the fresh light of the morning. I know it is so good for my soul to just get it out. Having cancer is a full time job between research, appointments, figuring out how to pay for it and doing things to support your healing, not to mention all the phone calls and emails of concerned family and friends that want to know how you are doing. Thank god for support. Goddess too:)


Yesterday I went in for the Full Moon Harvest, as I like to call it, the retrievel of my eggs before chemotherapy to protect my chances of conceiving one day with my own eggs. This was a no question procedure for me and it all flowed very easily to find the doctor and the non-profit that could offer me a less expensive procedure. My doctor, Dr. Oktay, just happens to be one of the best in the area so I lucked out. The process was a week of fertility drugs and injections, plus a drug called Femarra, to lower my estrogen, as I have extrogen positive cancer to they have to be careful. These drugs made me senstive and emotional as well as being bloated and a bit spaced out. But it was only for one week. They monitored me 4 times that week on a sonnegram to see how the ovaries were developing. Then, when it reached the right point, they gave me a trigger shot to stimulate the ovaries to release the eggs and I went in for some anesthesia and a 40 minute procedure that extracted the eggs.  I guess I am one "fertile mama" as my friend Jules said, because I got 20 eggs and 19 good ones. Usually women my age get 6-12....so it was a very lucrative operation. At least now I know I have some back up for after chemo if I meet Mr. Right and decide on motherhood. I sure do hope so, all of this has made me realize how much I do want children and family, which is such a gift as I think I convinced myself I would be fine without it. I guess I would be "fine" but in my ideal life, I have kids and grandkids and I am sitting on the porch in a hammock telling stories about when the internet first came out....

The side effects from the retrievel are minimal, but as I have always had intense menstrual cycles, I have quite a bit of cramping and can feel my ovaries with every step I take. I can feel they are sore and need some time to just rest. As I am supposed to start chemotherapy next week, I think I might want to wait a week or two to just give my body some time to recharge, but lets see....Also this chemotherapy business is just so weird, I still don't feel 100% on it, especially once I read all the side effects. Also as I read more and more about cancer and emotions, I get the intuitive feeling that the emotional work is the thing that really is going to heal me. Check out www.alternative-cancer-care.com it is a fantastic site to learn about the emotions behind the cancer in the first place and how it impacts the body...I feel like, chemo is easier than dealing with the deeper emotional causes.  I am thinking of going back to acting class, the one and only place I know of that I feel has helped me to be free in emotions and to really let go. Therapy groups to me have always been hokey and I find I just don't break down the walls with some guy telling me to imagine my mother on the opposite wall and I need to tell her how I feel. Its just...I don't know,....contrived...but maybe thats just my resistance. Give me a juicy script any day to let my imagination take me....


Also, for the chemotherapy I am looking at how to support my system with Mistletoe injections and Avemar supplements, these seem to be really great for the immune system in cancer patients....Now I am doing a TON of supplements from my accupuncturist as well as his herbs, western herbs and so much organic vegetables, juices and superfoods as I can do. But truth be told sometimes I break down and have a bagel, although with tofu cream cheese, or some raw chocolate...but not very often. I do know I need to exercise more and do more yoga, after the surgeries I couldnt really because my left arm was weak and now I am resting from the egg retrievel but after my ovaries rest up I am getting back to the movement therapy which as many of you who know me, know, this is my MAIN medicine. Dance. Dance and more dance, throw in some yoga and massage and we have balance.....I need to cry more though and FORGIVE alot...mainly my parents, ex-boyfriends and myself. Stop witholding these emotions for fear it is "too much" or isn't "nice" or people won't like me and run away. I know this intellectually isn't true, but still, I withold.  Its a learned pattern of stuffing. And I don't want to be a turkey anymore....haha. Onward and forth, to the worlds of artistic and emotional expression, wheat grass and Mistletoe....and laughter the very best medicine....All blessings...

Dr. Pepper....diet that is.

I don't want to do chemo but I love my new doctor.  He just has that New York Jewish thing that I have always found charming. Plus he is just plain nice. He sits with me, he hears me, he laughs at my jokes, he makes some of his own that I laugh at, he wears light yellow blazers and drinks Diet Dr. Pepper. "But it says doctor" he replies, when I rouse him for drinking it. "Dr. Malamud--how can you drink this? IT causes Cancer!" I exclaim, have teasing and half serious.

Secretly I want to get a bit angry,  how can you prescribe me chemicals to make me well when you are drinking the chemicals that probably made me unwell to begin with? I don't say this, because, well, really the jury is still out about WHY Aylen has cancer. I think that jury will be out for a long long time. I mean I drank a few diet cokes in my life, quite alot of equal in highschool, trying to get thin, or rather, thinner, by drinking coffee with no calories. Ugh. I shutter to think of the things I did to my body in the efforts to be something I thought I should be.  Now here I am so grateful to have a body, just wanting it to be free of disease, forget cellulite or round tummies. And here is my doctor with Diet Dr. Pepper on his desk as he talks about chemotherapy drugs. "I am missing my aspartame qouta" he jokes some more. I like him for this. He knows its ridiculous.

Its also ridiculous that in the waiting room, is coffee and tea and tons of sweet and low and splenda and sugar packets.....Really, its so ironic.

But they are offering me the chemo "light". No hair loss, less nausea, perhaps some medical marijuana, less fatigue, a nice comfy chair with snacks and a TV while I take it.  CMF. Its been around since the 70's, its the most common, its got good numbers and I am young, so the damage it does do will get taken care of by my young body in a heartbeat.  Well, thats what they say anyway. Then again, I am told the same people who made chemical warfare also made these drugs.....I am not sure if Diet Dr. Pepper was around then. I wonder if there is a connection somehow. 

I get a list of side effects that Dr. Malamud has drawn a black line thru, well at least all the ones he can draw a black line thru. Kidney damage, blah blah damage, this kind of damage.....I wonder why these side effects bother me more than the ones I read about on natural supplements. Now, come to think of it, I dont see that many side effects on natural medicines. Is that because of politics or reality? FDA regulations, all that stuff, I don't know. Should probably go sort thru the miles of information on the internet, again.  I wonder about the guy in that true story movie, Into the Wild who goes and lives out in the forest alone and ends up accidently ingesting a dangerous plant, mistaking it for an edible herb in his trusty herb book. Oops. That came from nature, pure and true, and he died from it. Bet he would have taken some chemo instead of that nasty herb. He died alone in his little camper, pissing blood.

 I stay with this fact as I leave the doctor's office. Maybe Diet Dr. Pepper won't kill me as fast as nature. Maybe chemo will save my life. Maybe I am making the biggest mistake of my life. Maybe I am blessed beyond all goodness. Maybe, I need to go find my roomate and have a glass of wine, even though its supposed to be "bad" for breast cancer. Maybe, nobody really knows what all of this is really about, but God. And for sure, God would want me laughing and remembering, that he works in some mysterious ways.   I think I am going to go get a Diet Dr. Pepper and call it a day.  Better yet, hitchike to the middle of nowhere and talk to the bears. Sigh.