Miso tired


I got chemo yesterday. I don’t feel so bad yet. Mostly I am tired and it feels like I am walking in mud. It’s a strange sensation. In any case I am going to get a second opinion today at U of P with Dr. Angela Demichelle. I have an extensive list of questions for her as she is am expert in the field and knows a lot about my cancer. While Naomi, my friend Ori’s mom, was here this week we developed that list of questions. I am eager to hear what she thinks. I really want to be aggressive with treatment if it means survival. I have contacted some organizations that do nanotechnology research and have asked to be part of them. They involve injecting the patient with a cancer eating virus (oversimplification on my part). I told them my situation and I am praying that I can get into one. They are already talking about there use in metastatic disease and especially breast cancer. Pray for me, or cross your fingers,send out energy, whatever it is you do.

So as I like to do from time to time I have made an observation. As a society we are bombarded with studies that say certain things increase/decrease the likelihood of one getting cancer. Some well meaning authors have published books that blame food or a lack of vitamins or living close to power lines for our cancer epidemic. Yet, science seems to find a genetic marker for nearly all cancer. My question is then, if my cancer has been proven scientifically to have been caused by a GENE then why do people I meet tell me I get cancer because of what I ate, the lack of vitamins in my food, or where I lived. Is this a case of blaming the victim? Example…I call a woman who makes macrobiotic meals to see if I can occasionally get one instead of always trying to cook healthy for myself. I tell her my situation and she proceeds to berate me about not eating “macro perfect”. She tells me the miso soup I make is crap , not real miso. She tells me I need to meet with macro food advisers (that I can not afford). Nor can I slow her down once she gets to chastising me. I got off the phone and I was like “F*** her lets get a cheeseburger”. I am really amazed at a lack of sensitivity or decorum that people have. There are ways to express opinions without saying , “you deserve this cancer cause you messed up”. I am not sad about this just a bit taken back. The blame game. I think people do it to feel safe. Its like well I will do all these things right and I won’t get cancer. Or die. Well I have news for you that’s bull. I don’t care what you,eat,drink,or how few power lines you live near, we all die. Some of us live to be very old. Some of us do not.

My children’s Uncle John died a few weeks ago. He was 42. He was watching television with his wife and he had an aneurysm. There was no expectation or way to avoid that. It is tragic for his family, wife, children, friends. John was hard working. Loved his friends and family. The good man that he was is evident in the fact he was an organ donor and his senseless death gave life to many others.Thankfully no one will blame John for having an aneurysm. Thankfully no one will tell his wife that he could have avoided it by taking vitamins or eating the right miso soup.

I try to plan everything. I plan to be sick and well. I plan doctor appointments, tests, acupuncture,yoga classes. But some of the time my body has other plans. I try to keep that in mind. I am not totally in charge. I wake every day and tell myself it will be okay. Mind over matter. Sometimes I can will power myself a good day sometimes I can’t. That’s the nature of illness. You do what you can. My thoughts and prayers turn to all of you a lot of the time when I am in my chemo coma. I pray for Alainia who has IBC too. I pray for Meg’s mom that she will also remain cancer free. I pray for John’s wife and children, I pray for Tony to heal from his surgery. I pray for my friends marriages, I pray for some people to remain sober, for others to have peace, for some I pray for better jobs, sometimes I just praise and thank God for His blessings and divine plan. Praying is spirit over matter. It is always uplifting and reminds me that it is a big world and I am small. Not the center of the universe. And that’s a good thing.

12 Responses to “Miso tired”

  1. d says:

    Hi Andrea. I think you are absolutely right about people playing the blame game to make themselves feel safer. Just another sign of how self absorbed our society can be. When someone dies of lung cancer the first question seems to be, “Did he smoke?” Then, if s/he did, “How many packs a day?” God forbid you say that a lung cancer patient never picked up a cigarette in his/her life. That blows people’s minds. We now also have cervical cancer, which it’s now being broadcast is a result of an HPV infection. So, it follows that if you smoke or have lots of sex you must deserve what you get in the end. Please. My friend Barb’s husband died of esophageal cancer in April. He had pain that he assumed was just bad acid reflux for a year, and by the time he got himself looked at, he was already in the final stages. After he died, most of us tried our best to be there for Barb and her daughter- avoided asking assholeish questions and saying how young Bob was, etc. But she has one friend who decided to keep asking questions, like, “Well, how long DID Bob have that chest pain?” and “Bob smoked as a teenager, right?” At first Barb told her that the doctors said there was very little that could be “blamed” for Bob’s cancer, and that the only mistake he had made was not seeking treatment sooner. A few weeks later, this friend came over again and made a comment about the fact that Bob had indeed smoked as a kid, and she was sure that had something to do with the cancer developing. When Barb reminded her that smoking was not the issue, she had the balls to ask, “Well what did the death certificate SAY???” And I was very very proud of Barb, when I heard that her simple response was, “It said that he’s dead.” Moral of the story- (some) people suck, death scares them, and many tend to first think of how things could or do affect them, and not the person who needs their support and/or understanding. There are probably some really good responses you could come back at thise types of people with, but emotion tends to get the best of us when we are blown away by insensitivity of others. Many “healthy” runners drop dead of heart attacks. My Godfather died of lung cancer and he hated all tobacco. A wonderful macrobiotic diet and lots of exercise and meditation would probably make me a much healthier gal. But living, for me, is about sharing a drippy gelato cone with my 2 year old son, and enjoying the warm fluffiness of my comforter more than the cold hard belt of my treadmill. F**k macrobiotic miso soup. My fingers are crossed, and my prayers and energy are with you. Now go eat a cheeseburger and smile…

  2. Siobhan says:

    give me that woman’s name and address. i haven’t been in a good fight in a while.

  3. jenni bender says:

    i’m going to take this moment to truly say what i think right now, bare with me… i’m with siobhan. i am a protective, friend, sister, daughter, lover, what have you… i do not appreciate anyone telling you such things. more so, because i believe what she said is total bullshit. i don’t get why people play the blame game. truth is, God has a plan for us, we don’t know what that is (nor should we), eating the right food and drinking the right drink and breathing the right air and all of that stuff is fine if thats how you want to live life. my cousin’s baby died at 2 weeks old… was that his fault? no. blaming people for what they are going through and the hell they have is like judging God’s handywork in my eyes. i’m not saying God gave you cancer because he wants you to suffer or anything like that. i’m just saying that things happen in our lives that we don’t understand the reasons for, but God does.

    i love you and i think you are wonderful and strong and honest and just simply amazing. you do not deserve to feel pain or feel ill or have to suffer, most people don’t, but we have to live with what we are dealt and in that, grow close to God and our family and friends. all of this is about love right? living and loving, thats what Jesus would want us to do (i think atleast). and andrea, you are doing a seriously wonderful job! you inspire me daily and i’m blessed to have you in my life.

    all that being said…. i’d truly like to have 5 minutes alone with this woman and with anyone who going to disrespect you like that. (i know i just contradicted everything i said, but i’m human).

  4. the other naomi says:

    i loved hearing your voice and talking this morning. as you can see i got to the blog to read up on all that i’ve missed.
    i think there’s a whole gang of women who wouldn’t mind sharing a piece of that ignorant person, but that’s all she is, an ignorant person.
    i’m so glad you’ve got a gang behind you to back you up, it makes me worry alittle less.

    love love love

  5. megan scott says:

    i joined the andrea gang…after a round with us, our macro/miso loving lady will be terrified whenever she sees the pink nautical star. okay so really i’m just a pacifist with my first ever tattoo (thanks again kelly), but i think even a sit down with the punk rock mommy gang, and she’d be singing a different tune.

    we love you, andrea,


  6. Kelly says:

    Sometimes when I read the blog I only love you more, now is one of those times. A perfect ending to a stress filled day… hey does stress give you cancer?
    Love Kelly

  7. Andrea says:

    Wow I had no idea that my pacifist Circle girls were so ready to fight. I really only brought up the conversation because I found it indicative of the blame others, protect myself, allay my fears attitude that gets thrown my way. But more than not I just find it interesting and I am not angry about it. All those psych classes has given me an enjoyment of simple human observation without judgment. So it is 4:25 a.m. and I have been up for 3 hours. Sadly, it is mostly because I am mad at my husband. The same guy that wrote the love note above. UGH! This is a bitch!!!!

  8. steve berman says:

    I have been reading your blog and am really taken back. It’s been a long time since we have seen each other. I would love to talk to you. While reading your blog, memories of you and Stacey came rushing in. I can’t believe that this much time has passed. After reading your story I wanted to write you before more time passes by. I tend to put thing off until tomorrow and I felt I should not.If you would like to speak my cell is 215-. I am always in town working.
    Take care,

  9. Morgan says:

    Please let me know which specific trials you are trying to get into. I know some doctors, just by email. Also, our CEO knows tons of folks in the cancer field. I may be able to get her to write a letter or something.
    Pull strings where you can, man.

  10. Joanne says:

    You were a great inspiration to me this afternoon. I listened to you on Dr. Dan’s radio program in my car during my lunch break. I hadn’t heard of your blog or your story before today. You made me stop and remember how precious life and family is – although we know it – sometimes we need someone like you to remind us. I wish you the best. Thank you for uplifting me today.

  11. v says:

    I heard you on Dr Dan yesterday and tried to access your blog at the library where I work. Funny thing, it’s blocked-the filters keep us from accessing your pornographic, subversive site! I think it’s really just the word “breast” that causes the hissy fit. Well, anyway, after listening to Dr Dan, I was curious, so I checked it out. Glad I did.
    I just scanned some of the comments, and can’t help reacting to the whole miso mess. Please, eat whatever makes you feel good. (If that’s possible)

    I love the whole “blame the victim” thing. Mainly, people are just trying to make themselves feel better. They are faced with their own mortality, and are looking for reassurance that they won’t end up the same way. “Well, I’m not overweight (like you) so I won’t get diabetes, heart disease, etc.”
    Surprise, we’re all going to die and most of us don’t know how and can’t really control it either.

    Yuck, how sensitive am I, maybe I can keep talking about dying a little longer. Sorry. My sister had lung cancer in 2000 and passed away at age 48. The worst question was “did she smoke?” asked in that whispery way that people use when they’re talking about cancer. It just drove me crazy. Maybe she did, maybe she stopped a long time ago, whatever. Was she a beautiful person, did it devastate all who knew her to lose her?

    Well, I’m so sorry to be venting on your site. I was thinking about the way people always say how brave you are, when you feel you are just living, that you have no other choice. You know it’s meant to be a compliment, but I understand that it doesn’t feel right. I think people who are not living with a challenging situation cannot imagine themselves in it. I watched my sister, and still can’t imagine myself in a similar situation. But what I loved about her when she felt really bad, she was sometimes downright nasty. That I can imagine.

    I truly wish for you all the best. I know that your life is cancer right now, but I hope that it can be just life.
    It sounds like you have a good handle on it, and I think your blog is a good way to find help when you need it. Most people are really good-hearted and just want the best for you. I’ll keep you in my thoughts.

  12. Terry says:

    Hello, I was reading your blog and noticed that you had a visit with Angie Demichelle. Though I was wondering how that went, I am sure that you found her to be a compasionate, lovely physician. She treated my life partner for nearly 4 years following her diagnosis. Jean was very ill (advanced stage 4) and probably would have died within the first few weeks of her disease if not for Angie. The extent she went to far exceeded any reasonable expectation. Good luck.