Tuesday, May 26, 2009

Oficially no longer depressed!

It's a little tough to change from eating the way I usually do and drinking wine with dinner, but the alternative is my incentive.

It sucked enough hearing the diagnosis, but the "plan" was even worse because I know about the side effects. The proposed plan goes something like this: surgery to remove the tumor and a good sized margin of healthy tissue around it, (which would then require removal of the implant for lack of skin) followed by radiation 5 times a week for six weeks. I am unclear about how long I would have to wait and heal before reconstruction.
I am feeling like the kid from Minnesota. I really don't want to take the poison.

Reconstruction sounds mighty complicated, as well.
The Latissimus Dorsi Flap procedure, involves an oval section of skin, fat, and latissimus dorsi muscle being detached and slid around through a tunnel under the skin to the breast area. Blood vessels remain attached whenever possible. The tissue is shaped into a natural-looking breast and sewn into place. If blood vessels have been cut, they are reattached by microscopic surgery to blood vessels in the chest area.
Latissimus dorsi muscle swung forward to create a new breast.

Many breast surgeons like this procedure because the flap is easily slipped around front, through a short tunnel in the skin, and put into position. Generally this procedure produces excellent results with few complications. However, the skin on your back has a different color and texture than breast skin. Also, removing the latissimus dorsi results in some back asymmetry (unevenness in the appearance of your back). Usually, though, back function and strength aren't affected.

New statistical prognoisis: 50% chance of recurrence.
I asked Dr. Funk (who I love, if you couldn't already tell) "What if I do nothing at all?"
She said I would have 5 -10 years good years then start feeling some pain after the cancer had spread to my bones.
No offense to mathematicians and doctors, but Damon & I both feel the percentages the doctors quote are all bullshit anyway. Quoting numerical statistics doesn’t take into account individual unique circumstances, or the patient taking action to fight the cancer. After all, the radical mastectomies were supposed to be a 92% guarantee against recurrence.
I am going to stick to this natural plan for 3 months (I did this for 1 month in 2002 and shrunk my tumor by 1/2) and see what I can do to the tumor. I am strong willed and believe my body is resilient.

Quite frankly, I think 10 good years sounds better than a year of hell followed by permanent, irreversible side effects including but not limited to: the fleecing of our finances, lymphadema, scarring, moving muscles and skin from my back to my front (to reconstruct for the second time). That's like replacing a front quarter panel with a tail fin on a 1961 Cadillac.

I feel really good. I do not plan on going anywhere, at least until my suite in hell is ready.

Friday, May 22, 2009

I feel great

Since we got the news that the lump is cancer, everyone asks me how I’m feeling.
I feel great.
It makes no sense to me that I have a disease, but I feel fine. I feel like a fraud because I feel so good and have told everybody I have cancer. In fact, I may actually be in denial myself. Unless I feel for the lump, I really don’t feel any symptoms.
If there is an adverse effect to report it's mental. I feel compelled to read about cancer, cancer treatments, what happens in advanced stages. It can be intensely depressing. One of these days I will get tired of it and read a novel.

There are fatalistic thoughts hanging around in my consciousness as well, “Maybe I should write myself one of those convenience checks the credit card company sends me every month”.
Until I was diagnosed in 2002, I never, ever thought about my mortality except to think that for all the adventures I’ve had, I ought to be dead already. Since that cancer diagnosis happened though, I am constantly aware of my mortality.
I recently saw a Sundance show with Quentin Tarantino, who said he’d always felt invincible because he knew there was something he was supposed to do in his time on this Earth. He did lots of crazy things, knowing he wouldn’t die until he’d done what ever that was he was put here to do. He said he began to think he was mortal again after ‘Reservoir Dogs’.

In reading about cancer symptoms, it seems most of the symptoms come from the tumor growing and pressing on nearby organs or nerves, sometimes the tumor releases toxins that produce feelings of tiredness or sickness. Since my tumor is pressing only on a silicone implant and my skin, which because of the mastectomy really has no sensation, as you know it, I don’t feel any discomfort. The rosebud tattoos I got where my nipples used to be were truly the first painless tattoos I’ve ever received!

Doing the detox and the supplements is really giving me an energy boost. I got up two hours earlier than usual this morning and did yoga! The difficulty comes in social situations. I had to say “no” to a dear friend’s birthday celebration, because I know myself well enough to know I can’t just say no. I love a good cocktail or five with friends.
I am happy enough eating raw fruits and veggies, but I have no will power when Damon cooks. Fine food and wine have been a big pleasure in my life, a big part of what drew me to my husband & I feel angry sometimes that cancer is having me choose to change my lifestyle.
I keep telling myself that this drastic change is only for three months, but in the back of my head, I know this may be a more permanent thing. This is a choice I am making myself.

Choice A. Helplessly submitting to the best that modern medicine has to offer- and I do mean submitting, from what I’ve seen those treatments are torture.

Choice B.
Taking my life into my own hands and feeling powerful and proactive – the fact that natural therapy doesn’t hurt is a big plus, too. I’m a total wuss.

No matter what, I always feel grateful to have such wonderful friends and family who understand why I am not going out for cocktails. I appreciate when friends ask how I’m doing; it lets me know they care. I am most appreciative when my friends & family get the non-verbal cues that I just don’t want to talk about it today and back off. It takes a lot to deal with a cancer diagnosis and it isn’t going anywhere right away.

Thursday, May 21, 2009

Why cleanse the liver?


As I type this I am drinking Dr. Schulze's Detox tea. Mmmmm, tastes like dirt. I successfully shrank my tumor in 2002 to 1/2 its size before the lumpectomy, and I am determined to shrink this one. I am not opposed to surgically removing the cancer, but I really want to make the whole process less complicated.

I have been following the story of the Minnesota family who prefer natural therapy to chemo. The news media tells part of the story, I feel sorry for the parents who are being painted as religious fanatical child abusers. The family has recently hired a lawyer to speak to the media for them, which is likely a good thing, since being in a heightened emotional state never helps anybody speak to the press. Attorney Calvin P. Johnson, issued a statement "by way of clarification and hopefully to aid your understanding of the procedural nuances in the Danny Hauser case."
  • The first and foremost important principle is: It is a violation of spiritual law to invade the consciousness of another without their consent.
  • This is a case of Love vs. Power. Love gives. Power takes.
  • The state does not have a right to take.
  • A parent's love and affection is a positive social right we all share.
  • The court compelled Colleen Hauser to make a decision between three chemotherapy providers. Apparently, she didn't like the list.
  • The court was forcing her to decide.
  • The decision for treatment cannot be forced.
  • Anthony and Colleen Hauser share Danny's viewpoint: They do not approve of chemotherapy. Under the circumstances of this case, chemotherapy constitutes assault and torture when given to a young man who believes that it will kill him.

I know we don’t understand the whole story, but I believe Colleen Hauser does want to cure her son; she just doesn’t want to use conventional methods. If you’ve ever spent any time around someone undergoing chemotherapy, you will understand exactly why the Hausers are so against it. I would hate to watch my child suffer the treatment. The clincher for me is that there is no cure for cancer at this time. If chemo were a 100% cure, then it would be worth it. My personal feeling is that it is barbaric to pump poison into a person who is already battling a disease.

Tuesday, May 19, 2009

This story is all about choices

I feel strongly that we ought to have choices in our medical care, for one Minnesota family, the court is taking away those choices.

Those choices should include alternative treatments if we so choose. Especially when medical treatments are so outrageously expensive.

Minnesota boy who refuses chemo says he’ll fight doctors

Restraints might be used on 13-year-old
MINNEAPOLIS – A 13-year-old boy’s vow to resist chemotherapy by punching or kicking anyone who tries to force it on him will present doctors with a tough task if they can’t change his mind.

Saturday, May 16, 2009

Sunday, May 10, 2009

Feels good to be out of that funk!

Thanks to my family and friends for hanging in there during the last week while I was feeling so dark and moody. I've been doing loads of research on breast cancer, survivors, alternative healing, and something started to really strike home with me.

Many of the women who had undergone the standard radiation and chemotherapy treatments looked a lot like my Aunt & sister did, like the life was being sucked right out of them. Even harder to take was that many of these photos were on tribute pages. On the other hand, just do an internet image search using words like “beat cancer, alternative, natural”, and you will see images of healthy looking people.

Saturday night, Andi Beltramo Shay, in town for a few days took me out to Planet RAW in Santa Monica for dinner and told me the inspiring story of her mother, who took her health into her own hands after her breast cancer returned after the conventional medicine "cure".

I’ve known Andi for a long time, she has inspired me over the years by being a fearless, independent woman who doesn’t give a damn what other people think about her. Andi was the first person to introduce me to Dr. Schultze’s book “There Are No Incurable Diseases”, when she herself found a lump in her breast. Andi did the detox program outlined in the book and her tumor began to shrink, and finally disappeared.

Over our raw, vegan dinner, she told me of her mother being diagnosed for the first time, being treated with chemotherapy, getting sick & losing her hair only to have the cancer come back again. During the second go around she did the radiation therapy, again getting sick and feeling the financial wallop.
She went back for so many surgeries (about 7 or 8) , the second time she had breast (and lymph node) cancer she received radiation treatment and it turned out that the technician was applying it to the wrong area! Andi's Mother tried to correct him by telling him that his was applying
it incorrectly, but he just snapped at her, saying that he knew what he was doing.
After that horror she decided to go the alternative healing route, which was obviously a success as she had been given four months to live.
She began to read everything she got her hands on about manifesting health by changing diet. She changed her diet, put herself on a pretty intense regimen and in time went back to her doctors who thought she’d been treated by another medical facility. Her doctors were astounded when she told them she’d healed herself. Her cancer was gone! That was in the early nineties and she is still alive today.
Choosing to go outside the conventional treatment box may take more courage than blindly following doctors’ orders in that doing so demands faith in your own ability to heal and taking responsibility for your health. I have begun to realize that our culture has us trained to do exactly the opposite of taking responsibility. We look to doctors to cure us, we look to politicians to pass laws to protect us, and we look to lawyers to sue tobacco companies when we get cancer from smoking. I am not in any way advocating blaming the people who are sick, I am advocating we start looking at the ways in which we can empower ourselves to really thrive.
I am not saying we should not use conventional medicine, I am saying we shouldn’t rule out alternative or Eastern medicine just because the industry that makes money off our disease says so.

Throughout my life, I have made a point to listen to my inner voice. The times when I didn’t I was sorry. Last week when I was thinking abut the course of treatment outlined by my doctor, my inner voice was screaming at me not to take the poison treatment. I’m not finished researching and asking questions, but I have already started Dr. Schultze’s program, it can’t hurt, and I feel that is the most positive distinction. Herbal, nutritional and Eastern medicine doesn’t hurt.

Barb & I at Revlon Run/WalkLA

I am so lucky to have a sister like Barb! The Revlon event was truly inspiring to witness.

Saturday, May 9, 2009

Barb, Anne, Mike & Chris at the Revlon Run/ Walk

Saturday, May 9, my sister Barb, her friends Anne, Mike & Chris walked in the 16th Annual Entertainment Industry Foundation REVLON Run/Walk for Women Los Angeles.
The Shadow & I went downtown to meet up with them and get some photos. Having lived and worked in Downtown Los Angeles, I knew where to find free parking.
Car parked and locked, Shadow & I headed to where the streets were blocked off. Two blocks away, my eyes began to tear up at the sight of the estimated 50,000 participants from all walks of life, united by the common dream of finding a cure for women’s cancers.
Barb & I had earlier agreed to keep in touch by mobile phone, so I called to see where they were on the route, then I walked up to the corner of McClintock and Jefferson to intercept them and get some shots.

The Revlon Run/Walk is Los Angeles’ biggest fundraiser for women’s cancers – distributing nearly $55 million over the past 15 years.

I saw so many people carrying signs or wearing shirts commemorating the lives of their beloved mothers, sisters, aunts and friends lost to women's cancers. Barb wore her Bowling For Boobies 2008 t shirt and had printed some cards with the BUSTED Foundation website to pass out to other participants. I hope one day the BUSTED foundation fundraising events will grow to such a grand scale!

My sister Barb will be wearing this sign at the REVLON run/walk

The top photos are of my Godmother Isabel and my youngest sister Beverly who died at 36.

Friday, May 8, 2009

Full Moon

My moods have been all over the place this week, but then I am a Moonchild and we are notoriously temperamental. The full Moon never fails to light up my soul, and so after the stressful week of tests and thinking way too much about what amount of slicing and dicing I want to let the doctors do to me, I decided to take The Shadow (also born under the sign of the Moon) for a really long walk.
We walked down our usual streets around our house and then kept walking sunset becoming twilight and then the glorious full Moon rising. We discovered some really cool pockets of architecture from 1930’s California bungalows to Spanish style stucco to really dilapidated Craftsmen complete with bars over the windows to the quietly upscale homes around the Occidental campus.
The evening was so warm, with a light breeze carrying the smells of the ‘hood, carne asada, marijuana smoke, Jasmine flowers, it reminded me of the years I lived in San Francisco’s Mission District – except the sidewalk didn’t smell like pee.
The warm weather brings everybody out, the diversity that is Eagle Rock, runners, people dining on MIA Sushi’s patio, guys hanging out in front of Evil Or Sacred Tattoos, smokers burning cigarettes in front of Barrio Fiesta, teenagers rolling down the sidewalk, one on a skateboard, one pushing a shopping cart with another one in the cart, sports fans yelling at the flat screen at The Bucket, me & my Shadow.

The shitty mood I’ve been nursing all week was washed away by the life all around, the full Moon and I started to think everything would be OK no matter what comes. I’ve been feeling like I have to hurry up and make some decisions about treating this cancer and feeling so conflicted. There are some things I really want to do in the coming months that surgery, radiation or a combination will totally get in the way of.
Tonight I decided I should allow myself a little slack and take my time. I plan to have some more conversation with my doctors, to continue the Dr. Schultze detox and nutrition and most importantly, I will keep a positive outlook. The walk filled me with love for the beauty that is life and reminded me that I am not alone, plenty of other people have their own battles, and it’s part of life. I have been focusing too much on my inner turmoil, twisting my gut into a knot about a future that doesn’t even exist except in my mind.

The Shadow is having a nap on the cool tile floor at my feet. In this moment I am really happy and what more can I ask for? I most likely will have more anger that I have to deal with cancer again and I will probably feel sorry for myself again, but right now life is beautiful.

Thursday, May 7, 2009

This is the machine I was in

To the left is a 3D image from the CD I got today from the MRI technicians at Cedars Sinai. Weird to think that is my body. Not being a radiologist, I can't read anything into the pictures, but I do appreciate the technology. Images in the viewer can be rotated and manipulated in what seems like endless combinations.

Since I can't see the troublesome tumor, I decided to play with the pretty pictures.
Tomorrow I have an early appointment for a body scan. Dr. Applebaum assured me it won’t be as confining as the MRI, but the photos I’ve seen online certainly look like the same metal tube.
The last few days have had me feeling angry and somewhat in denial of what I have to deal with here. I guess I am starting to accept the reality as what it is, and I don’t feel as bad. I had a great conversation with someone early today who told me not to even worry about the cancer, because the end of the world is coming in two years. A reminder that life is a delicate thing, anything can happen at any time to completely shake up our notions of safety and security.

Tuesday, May 5, 2009

MRI Wednesday

I'll be going to the S. Mark Taper Imaging Center for a breast MRI. I had this same procedure in 2004 before the mastectomies. At the time I had no idea really of what to expect. Having been previously very healthy, my fear of hospitals and test procedures was because it was all so foreign to me. The experience I’d had with hospitals and specifically cancer treatments were centered on my Godmother and little sister who both died of breast cancer after lots of treatment and in the case of my Godmother, a long battle with breast cancer.

I recall the MRI was scheduled early morning, not my best time of day anyway. I had no idea how small the tube is that they put you in for the test. I remember laughing because I was told to lie face down on the table, and the attendant put 2 coffee filters (that’s what they looked like to me) in the depressions that allow the breasts to hang down.

Breast imaging is very sensitive to motion. I was told even the slightest movement could cause errors, and that I should make myself comfortable and lay motionless for the approximately 60 minutes. The technician added to my fears when she told me how to signal her if I needed to come out right away in case I felt my tattoos burning. Apparently, some older components of tattoo inks could be pulled out of the skin by the magnet!
I lay down on the table as instructed and the attendant slid the table into the tube. I thought of the sickbay aboard the Starship Enterprise and wished the technician could just wave a Tricorder over me and I would be healed. My husband sat outside the tube, but I couldn’t see him for the bright light shining in. I felt terrified and claustrophobic, trying to relax and be still while crying my eyes out. I didn’t feel anything, but heard thumping noises that seemed to surround me and grew increasingly loud. I lay there crying for what seemed like the longest hour of my life.
I think the only way I was able to keep still was the idea that I’d have to do the whole thing over again if the image was blurred. I felt completely drained after I got up from that table, but no so much that I didn’t notice the valves nearby labeled N2O (Nitrous Oxide).
I’m not so terrified this time, I know what to expect and I asked my Dr. for some Valium to take before I go in. I know it will be uncomfortable, I still get claustrophobic even in an elevator, but I’m anxious to get the tests done.

Saturday, May 2, 2009

Culture of fear

I want to show my appreciation to everyone who voiced concerns about my decision to post the information about my cancer. While I appreciate your concern, I was careful not to post the pages containing any more information about me than you can already find on the internet. My patient number is not my social security number. The numbers are blurred now just to ease your minds.

That we live in a culture of fear is undeniable. Turn on any news program and you are being fed more reasons to be afraid of the world you live in. Personally, I feel this is a shame. I would much rather focus on the beauty of the experiences this world has to offer than the danger. If I lived in fear, I would not be able to function at all. I would have missed out on many of the most incredible learning experiences of my life and I would be totally freaking out right now, thinking about what I have to do in the near future to deal with this disease.

We know the chemicals the body produces in response to fear can be toxic, especially in prolonged doses. Panic, hysteria and shutting oneself off from the world is just not the way I want to live. I have had people tell me I am courageous. I don’t feel particularly courageous; I just don’t want to close off the possibility of life. I know I have a limited time to be here and I want to make the most of it. I know I can’t do that by hiding in my house or panicking or crying.
I have chosen not to take the safest road through my life, and as a result have had many exciting and colorful experiences, I'd never ever trade for a safety net.
I am creating this blog to share my experiences and emotions around dealing with cancer and the medical establishment. I hope to give someone else who is beginning her own journey an idea of what to expect, what possibilities are available and some of these blogs will simply be me venting.
I know the feeling of helplessness that occurs when one is presented with the news that someone you know has cancer. You want to do something, but there really isn’t much you can do. Please know that I appreciate it and if I do need something you will most likely read about it here. Know also that I am not afraid of my identity being stolen. Like a cancer diagnosis, if that were to happen, I would take whatever steps necessary to deal with the situation.