Tuesday, January 15, 2013

Bad Days Anyone?

I've learned two important things this weekend. Everyone has bad days, even cancer patients. That's a serious joke. (Get it, it's an oxymoron).

Here are the two critical pieces of information I must share:
1) Everyone has bad days...(not just cancer patients...)
2) Bad days are not a good time to talk about feelings that start bubbling up...

I made a serious mistake this weekend because I proceeded to have #1 and then continued to do #2. That's funny, in a Beavis & Butthead kind of way but I digress. When you are having a bad day it can simply take over and spiral out of control. Some days it feels like the Universe is out to get you. Like one of my favorite kid books "Alexander and the Terrible, Horrible, No Good, Very Bad Day"...

I get into this bad habit of pushing myself. Many times too hard. That is a hard fact to actually admit. I tend to overdue it and overextend myself. That is when I get into trouble. Saturday was a rough day. It started out so great, I went to ballet, then after class I went to the ballet shop and bought my first pair of pointe shoes. I actually stood up in pointe shoes, as in, a real ballerina. I was so quietly happy with myself. This is a huge milestone in my ballet career. I then went home and rushed in to see the kids.

David was out cycling and the kids were inside playing with the nanny. I got home and was hungry. I should have eaten right then but Abby was complaining about being hungry so I started to make the kids lunch. Abby was riding her bicycle at lightning speed around the kitchen island and ran into me several times. That was irritating. Then I started wondering why the nanny hadn't started their lunch...and started getting more irritated.  After that I started organizing the house since we were meeting with a broker about selling our house. I was rushing around like a crazy person and the more I did, the more angry and crazy I got. As I was organizing the kitchen I thought, my mom and I just organized the pantry perfectly, labels and everything and crap was still just shoved everywhere; which led me to be super annoyed with our help. "We pay all these people all this money and I still have to organize this f-ing pantry?!?!?" I started complaining about them in my head more and more as I started to peel back the layers of disorganization in the various rooms. Ugh, ugh, ugh. I should not have been doing that. And so the bad day began...

Mistake #1 - instead of nourishing my body I deprived it by ignoring my hunger.  Which led to mistake #2 - Gave in to my OCD and started aggressively cleaning, vacuuming, organizing the house with reckless abandon... which led to mistake #3 - Stopped living in present moment, stopped "letting go of the little things"...and all that jazz. I knew it was happening and I even tried to buck up at one point when I was cleaning and take some deep breathes but I couldn't snap out of it. Sometime you just have to experience the bad day and see what it brings up. Many times things that don't normally bother us will surface on a bad day and it can be "interesting" (mockingly) to see what comes about.

I am typing all this because I don't want people to think I am constantly walking around completely relaxed in the present moment practicing mindful awareness with ujjayi breaths, chanting ohms and blowing smoke up my own ass. That would be ridiculous. That is always a goal but I am a living, breathing, idiot human who is constantly working to improve myself.  It is exactly in those moments of struggle that we can say "holy crap!...what it THAT ABOUT?"..."why am I thinking about that" or "where is that coming from?"...

It was one thing after another. I just let the negative thoughts spiral a bit out of control, all the while taking mental notes to come back to them another time and not take them too seriously. Here's some sample monologue: "Wow, look at the lines on my face...why do you care? you could die in two years. Or five. Or one. Or ten. G-d, I hope its 10 or longer.  I wonder if cancer patients can have surgeries? Will I ever be able to get that tummy tuck and fat grafting done to finish the breast reconstruction? Will I die a frankenstein wretch? Do cancer patients get botox? I suppose I finally have to admit that I will never become a famous movie or television star. My looks are totally fading. It is so sad to give up on a dream. I mean, you are just trying to stay alive after all, everything else is icing on the cake. Dang, that really sucks. OMG, you are so vain, who cares. You are a great person, no I'm not, well I should do this, I should do that, I should, I shouldn't, I shouldn't, I am, I'm not, etc. etc." The self-talk just goes on and on and it is BANANAS.

So after not really eating lunch, and snacking somewhat after the broker meeting, David and I decide to go out for a nice adult dinner because I told him a few days before that I wanted to do so on Saturday night. Oh boy. File that under bad idea. I had wanted so badly to have some adult time with the hubby. He's been traveling a ton and I have been stuck in toddler world. That desire, however, was no match for the bad day I was having. After a martini I started to bring up serious, deep topics because they have been brewing and needed to come out. For the love of all things wonderful, please do no do that. I should have said, "I am having a really bad day and I need to talk about some things with you that have really been on my mind but now is not a great time..." And since guys never like the hear they have to have "a talk" (I have heard this makes their balls shrink, hey, I'm just sayin')...so I would have continued with "I have some sad thoughts about my illness and when I am in a  better place I want to talk to you about them"... Instead, I just kept harping on things and bringing up awful topics like my dying and him getting remarried and other nonsense that turned into a horrible fight. That, compounded by a drink or two, is a recipe for disaster because things are said in the moment that you can't take back.

I feel terrible for some things that I said. I can't take them back. I didn't think my thoughts through. I just had, what is a perfect term for this, diarrhea of the mouth. Disgusting. I'm so sorry for David. Facing a terminal illness is difficult but it is also challenging to sort out all the emotions. But its best not to do it on an empty stomach, under the influence, after having the worst day ever. Just remember that bad days happen..."even in Australia"...and even to cancer patients.


Other updates:
Xeloda cycle #3 started Monday night. I am super, duper tired. And Dr. Mao said I'm in a bit of a rebellious phase. I haven't been drinking my herbs. I am doing too much. I'm skipping meals. I'm not eating great (well, sort of, I've been lax about candy since it is in the house after the holidays....but I try to counteract that with pressed green juices. That reminds me of my friend Heather who, when pregnant with her first child told me that she always was in mental agony about what she ate and often found herself forcing down some lettuce or other random green in the middle of the night when she'd had a day of eating too many sweets...LOL).


Wednesday, January 9, 2013

Mind over Matter

"Opinions are like assholes. Everybody's got one and everyone thinks everyone else's stinks." - Anonymous.

"There is no right or wrong, there just IS" - Andrea Brook, yogagirl.com

"There is no blue print for how to deal with cancer. You can only do your best." - Pam Paige, Therapist

"Anyone who doesn't like what I am doing can seriously SUCK IT." - Jessica Berman

I am learning to speak my own truth. I am trying hard to listen to my body, my heart, and my mind. It is not always easy. I had a wonderful session with my therapist Pam on Thursday. I had to get in to see her because I was having a mini-crisis. The night before I spoke with a seven year metastatic cancer young survivor. She's a tough cookie but scared the living crap out of me. If I wasn't a stronger person I could have spiraled down into a severe depression. It was bad enough that I was down in the dumps for two days after speaking to this woman. I fully processed everything that I discussed with this women. I wanted to hang up on her in the first ten minutes but I didn't. I didn't want to believe what she told me so instead I stayed on the phone with her for an hour and 45 minutes to make her and me feel better. I want to dissect portions of that conversation because I don't want to keep anything in. Since I've been diagnosed my life has been like an open book. Anyone who knows me or even who doesn't know me can read my story here on this blog.  

One thing Pam really helped me realize is that just because you have something underlying in common with someone from a group doesn't mean you're going to like each person within that group. I have been thinking that being in a cancer support group would be very helpful, except I say that while looking through rose colored glasses. You don't always identify with everyone in a group and often, someone who isn't in a good place can suck you in if you aren't strong. The one and only time I went to a cancer support group I thought it was helpful but looking back I recall that two of the six people made me feel depressed. Why would I want to do anything that could possibly make me sad at a time like this? The wordy point I am making is that if going to a support group makes you feel better then you should do it, if it doesn't then there isn't any rule that says you have to go to one! Second point, just because someone else is a cancer survivor doesn't mean you are going to agree with them, their opinions, or their lifestyle. Capiche?

I went to this woman for comfort and instead I was informed about how dire and serious my own situation was...um, thanks? She says that having it in the liver was so terrible. I suggested that it could be worse if I had it in my brain too...she seemed to think they were equally bad. (I am freaking out at this point and thinking, "WTF, do you have a medical degree?!?!"). She went on to say that in her cancer support group she buried two women last year and that she and another friend were the only survivors left. Holy crap, is that something you say to someone who was just diagnosed with metastatic disease?!?!?!  No fucking way.

It gets worse...She then suggested that I analyze what happened in the year since finishing treatment that could possibly make the cancer come back so fast and furious. She said it was angry and that it was pissed. She asked if I took my medications. She asked if I was juicing. She asked if I was resting. She asked if I was taking care of myself. I suggested that I wasn't the best about taking my tamoxifen and that I had taken a serious break from acupuncture... (I felt like a child having to explain to a parent what I had done wrong)... This makes me incredibly angry. THERE IS NOTHING THAT I DID TO MAKE THE CANCER COME BACK. NOT ONE THING. There was nothing within my control that made it come back. Her questions put me on the defensive because asking something like that means that somehow it was within my power to prevent it. Shame on her. It simply just isn't true!!!

The thing is, everyone's journey is different. And every one goes through ups and downs on different days of the week.  Maybe this woman is an amazing survivor advocate but maybe she wasn't feeling it on the day I talked to her. I recognize that and I accept that. What she said didn't resonate with me and I accept that too. Her journey is her journey and my journey is my own.

There is no blue print for surviving cancer. If there was, let's face it, everyone would be doing it and cancer would cease to exist. There is nothing clinically proven that the things inherently within our control will prevent one from getting cancer or having a recurrence. There are possibilities. For instance, if you are overweight you have a higher risk of getting cancer, but you also increase your risk of a myriad of other diseases too. If you smoke heavily you may or may not get lung cancer. If you drink heavily you may or may not develop cirrhosis of the liver or 60 other potential diseases from alcoholism. The old rule "everything in moderation" seems to apply here. As a cancer patient I think I try to control my nutrition, take chinese herbs, mediate, get acupuncture, avoid drinking and more to feel like I have some power over this situation. This sounds wonderful to a perfectionist like myself. It fits nicely in my little box. I can feel in charge of my situation but really the honest truth is that everyone is different and what works for one may not work for another. What I do appreciate about this journey and process is that certain things I am learning and experiencing are true for ANYONE in life. Eating healthy feels good in general. Working out feels amazing too. Avoiding alcohol and sugar feels good too. There are other times when I just want to go out to dinner with David and have a gosh darn martini, indulge in rich foods and enjoy dessert. Sometimes you have to do what feels good too. I know I don't feel great about it the next day but it's not like I'm doing that all the time. Every once in a while you have to just be and enjoy and answer a craving or two.

I don't know if the idea of mind over matter works while dealing with cancer... I'm not going to drive myself crazy trying to figure out what is the perfect way to be when you have cancer. I am learning to find the balance between "ultra organic, green juicing, vegan, meditating, power walker" and "indulging sugar, alcohol, red-meat eating couch potato".  There is a huge spectrum in between.  I'm not going to put extra pressure on myself to be perfect, all we can do is the best that we can.

I am, however, sticking to my mantra to be positive in my everyday life. None of us know when our time may be up. I would rather live each day being positive, creating special moments and feeling good about myself than dwelling on the negatives. There are lots of negatives in anyone's life and it is easier to dwell in them and be depressed. The braver and harder thing is to love yourself. Have a down moment and then let it pass and move on...

The most challenging thing I am learning is to not judge myself. Not judging myself is the hardest thing I am learning to do. This is where my yoga guru is helping me tremendously. If I feel a certain way, don't tell myself not to feel that way which is what I have historically done. Just acknowledge the feeling, the emotion, the thought and say "hmmm. well, there's that. interesting. let it go. it is what it is." Not judging others is equally difficult. But seriously who are we to judge? Everyone has their own process and journey.

I'm learning to love myself. I'm learning to respect myself and my decisions. I'm learning to enjoy what I have, enjoy what I've been given and how I've been blessed in my life. I'm learning to work through my challenges. I'm learning forgiveness. Forgiving myself and forgiving others so I can move on.

I'll keep reading my Pema Chodron and trying miserably to meditate and keep fighting the good fight.
I'm not ready to go anywhere yet.

Other updates:
Tolerating the Xeloda fine. Upset tummy a little once in a while but nothing I can't handle. Blood counts were actually good on Friday. Vitamin D is down for some reason.  Guess I'll take some pills and sit in the sunshine. I've been experimenting to get the right dose of "special cookie" that makes me relax and sleep through the night. It's all natural and it's all right!

Daily fighting with insurance company for treatment for Leo. They want me to go in network. I want him to see the best in our area. There in lies the disconnect. In network is usually not the best. I figured out they require an in-network, out-of-network authorization...oh boy, so that is in the works. He's still not walking but getting stronger everyday and his speech has improved dramatically. It is so rewarding to see. All the leg work with these specialists and the Westside Regional Center is finally coming to fruition. 

Tuesday, January 1, 2013

Happy New Year!

2013 is going to be a great year. I have faith. Based on what I've been reading, watching, and feeling I know this to be true. I have many goals for 2013. It is, of course, a year full of great expectations.

I started the Xeloda on December 17th. All was fine. The second to last day I started experiencing major fatigue. I have to admit that I have been lacking in my diet and my exercise plan. I realized that during the Houston trip when I hit rock bottom and had a burger with David at Five Guys. I did have tons of veggies on it but still...hadn't had red meat in over a year or more. I keep telling myself that I am drinking poison pills so why is a burger going to kill me? However, I am going to stick with everything in moderation BUT a mostly plant based diet. I can't put myself under that kind of pressure to eat Vegan and cook separate meals from the family, etc. especially since I need to have lots of protein while on the chemotherapy.  The last day of the chemo "on" week left me feeling so exhausted I thought I could sleep standing up. But two days later, after a few walks outside, I was feeling back to normal. Not that I don't love Holidays but I am so glad that they are OVER. I need to get back into the routine of things...

I had a great lunch with my friend and mentor Julie C. She is a beautiful person inside and out and I am so proud to call her my friend. We chatted about mutual mom-of-two issues. As we ate our vegan Umami burgers, she told me about two things she had come across that I could explore. Julie is always giving me new books to read, photocopying articles of interest and sending me vegan baked goods. We heart her. Of course, with all the materials Julie introduces me to I was hooked.

Tig Notaro
"Just a few days after comedian Tig Notaro was diagnosed with breast cancer, she found herself on stage at Los Angeles' Largo theater, revealing the news of her illness and delving into other personal struggles. The performance, which is now officially known as "Tig Notaro Live," was destined to make waves across the Internet and inspire all who listened to it." In this piece, available on itunes, you can really hear her process her diagnosis and what it means to be a cancer patient. It is a little surreal but funny as hell. My favorite line was - oh, you want to fly here and "watch me have cancer on the couch"...?!?!?

Power Nine.
This is an interesting study from National Geographic; the results were called The Power Nine: Secrets of long life from the world's healthiest humans. I sent this info to a few friends and my friend Lorraine told me that this is being practiced right here in our own beach communities! Check it out at BlueZones.com
Reverse Engineering Longevity
By Dan Buettner
Life expectancy of an American born today averages 78.2 years.  But this year, over 70,000 Americans have reached their 100th birthday.  What are they doing that the average American isn’t (or won’t?)
To answer the question, we teamed up with National Geographic to find the world’s longest-lived people and study them.  We knew most of the answers lied within their lifestyle and environment.  (The Danish Twin Study established than only about 20% of how long the average person lives is determined by genes.)   Then we worked with a team of demographers to find pockets of people around the world with the highest life expectancy, or with the highest proportions of people who reach age 100.
We found five places that met our criteria:
  • Barbagia region of Sardinia – Mountainous highlands of inner Sardinia with the world’s highest concentration of male centenarians.
  • Ikaria, Greece – Aegean Island with one of the world’s lowest rate of middle age mortality and the lowest rates of dementia.
  • Nicoya Peninsula, Costa Rica – World’s lowest rates of middle age mortality, second highest concentration of male centenarians.
  • Seventh Day Adventists – Highest concentration is around Loma Linda, California. They live 10 years longer than their North American counterparts.
  • Okinawa, Japan – Females over 70 are the longest-lived population in the world.
We then assembled a team of medical researchers, anthropologists, demographers, and epidemiologists to search for evidence-based common denominators among all places.   We found nine:
1. Move Naturally. 
The world’s longest-lived people don’t pump iron, run marathons or join gyms.  Instead, they live in environments that constantly nudge them into moving without thinking about it.  They grow gardens and don’t have mechanical conveniences for house and yard work.
2. Purpose. The Okinawans call it “Ikigai” and the Nicoyans call it “plan de vida;” for both it translates to “why I wake up in the morning.”  Knowing your sense of purpose is worth up to seven years of extra life expectancy
3. Down Shift. 
 Even people in the Blue Zones experience stress.  Stress leads to chronic inflammation, associated with every major age-related disease.  What the world’s longest-lived people have that we don’t are routines to shed that stress.  Okinawans take a few moments each day to remember their ancestors, Adventists pray, Ikarians take a nap and Sardinians do happy hour.
4. 80% Rule
.   “Hara hachi bu”  – the Okinawan, 2500-year old Confucian mantra said before meals reminds them to stop eating when their stomachs are 80 percent full.  The 20% gap between not being hungry and feeling full could be the difference between losing weight or gaining it.  People in the Blue Zones eat their smallest meal in the late afternoon or early evening and then they don’t eat any more the rest of the day.
5. Plant Slant
  Beans, including fava, black, soy and lentils, are the cornerstone of most centenarian diets.  Meat—mostly pork—is eaten on average only five times per month.  Serving sizes are 3-4 oz., about the size of deck or cards.
6. Wine @ 5
 People in all Blue Zones (except Adventists) drink alcohol moderately and regularly.  Moderate drinkers outlive non-drinkers.  The trick is to drink 1-2 glasses per day (preferably Sardinian Cannonau wine), with friends and/or with food.  And no, you can’t save up all weekend and have 14 drinks on Saturday.
7. Belong.
 All but five of the 263 centenarians we interviewed belonged to some faith-based community.  Denomination doesn’t seem to matter.  Research shows that attending faith-based services four times per month will add 4-14 years of life expectancy.
8. Loved Ones First. 
Successful centenarians in the Blue Zones put their families first. This means keeping aging parents and grandparents nearby or in the home. (It lowers disease and mortality rates of children in the home too.) They commit to a life partner (which can add up to 3 years of life expectancy) and invest in their children with time and love. (They’ll be more likely to care for you when the time comes).
9. Right Tribe. 
The world’s longest lived people chose–or were born into–social circles that supported healthy behaviors, Okinawans created ”moais”–groups of five friends that committed to each other for life.  Research from the Framingham Studies shows that smoking, obesity, happiness, and even loneliness are contagious.  So long-lived people’s health behaviors have been favorable shaped by their social networks.
To make it to age 100, you have to have won the genetic lottery.  But most of us have the capacity to make it well into our early 90’s and largely without chronic disease.  As the Adventists demonstrate, the average person’s life expectancy could increase by 10-12 years by adopting a Blue Zones lifestyle.

Last night while ringing in the new year with some friends, eating fabulous food, singing karaoke (sir mix-a-lot has nothing on me), high off eating 1/8th a special cookie, I toasted the New Year with 4 Xeloda pills and a glass of Sancerre...and I was grateful and at peace. Good times. 
Happy 2013!