Saturday, September 24, 2011

Out From Under

Beloved and I just celebrated our seventh wedding anniversary. We were married in 2004, whilst I was in the middle of my first treatment for breast cancer. I was bald, just out of surgery, sick from chemotherapy, but we were determined that cancer wasn't going to stop us from starting our lives together as husband and wife. And with lots of loving help from my mother-in-law, we pulled off what I think was a pretty perfect wedding, given the circumstances.

Fast forward to this past weekend, our anniversary and here I am bald and sick again.  The little crop of hair that had somehow miraculously sprouted over the first part of the year, giving me hope that at least I was going to be spared the hairless indignity for a bit decided to fall out in tufts. So once again I sat in the little green chair in our garage, whilst Beloved shaved my head with the clippers that we keep for what now seems like a regular occasion.

Happy Anniversary to us.

This week I finally finished my emergency course of radiation. It's been a very long haul and has taken a lot out of me. Think transformation into a very old woman very quickly.  I've seen some small improvements in my hand, but wont know really whether it will continue to improve or not. Only time will tell. Or whether the radiation has indeed stopped the progression in the nerves to stave off any more damage. Nor whether the next new chemotherapy will work, or for how long, or for what gain. We just don't know. Nobody knows.

The thing is every time I think about my cancer, I feel like I need to make some profound statement to keep raising hell about the state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with. But I'm really just getting to the point, where there's no bigger statement that I can make other than this is just my damn life and I'm deeply unhappy about it.

This cancer just directs every part of my life. It keeps me a slave to medications and their schedule. It keeps me a slave to the side effects of the medications. It keeps me a slave to the energy I have on any given day. It keeps me a slave to how I look and feel. It keeps me a slave in a body that I no longer recognize, a hand that no longer works. It keeps Beloved and I slaves to the next bit of news from the next batch of tests and scans. It keeps us slaves to the constant threat of the unknown, which as we keep learning, can change our lives profoundly in an instant.

And it keeps me a slave to the thought that we are just never going to dig ourselves out from under this.

And that's about all I have to say right now.


  1. Thank you for telling the truth. I'm so sorry you are going through this.

  2. I am ambivalent as to whether or not I should type what is on my mind here. Obviously, since font is hitting screen we know which side of my ambivalence won out. I am not by nature a buttinski, and at the risk of alienating a fellow member of our "virtual group therapy" network...have you given any thought to adding in complimentary alternative medicine into your soup? My treatment choices since my diagnosis 2 years ago are very different than most. And, yes, I sit here two years later having the ILC metastasize into my lymph nodes -- so not a poster child for success. But, as I read your blog religiously and the suffering you are exponentially experiencing, well what the hell, I am going to be a buttinski. I throw out the following for your research and consideration only. Especially knowing what an excellent researcher you are.

    Modified Citrus Pectin Powder (which my first ND should have put me on first thing 2 years ago, but didn't - subject for a future blog rant) has a track record for staving off metastases.

    Have you ever had your D3 and iodine levels checked? Low levels (much lower than the "bar" set by the MD community) have a direct correlation to BC and mets. I am currently on 10,000 IU of D3 daily (prior ND had me only on 6,000 IU) and Iodine Synergy 120c -- and eating seaweed salad daily!

    What about testing for heavy metals? Chelation therapy for heavy metals also has had very promising results with myriad of chronic diseases.

    Ozone therapy weekly. There are 3 methods - the one for mets is where they take a litre of blood from me, mix it with saline and heprin (sp?) to keep it from coagulating and infuse it with ozone. Then it is returned to me. I always feel so much stronger after these treatments. It triggers intensive apoptosis to thwart cancer cell proliferation.

    High dose vitamin C weekly - this treatment makes me "ill" for a couple of hours - and ignites "pain" as the C apoptisizes the cancer cells, but all manageable and short term.

    I am also alkanizing my body with high alkanine foods and a daily dose of (don't laugh...) maple syrup and baking soda warmed in my mini crock pot. I was fairly acidic before (this is tested by peeing on ph=strips). Cancer cells thrive on an acidic environment. 3 weeks of this protocol I have reached perfect "base" levels. Even the ND was amazed

    I will say that after 3 weeks of the above I am feeling stronger and healthier than I did for the prior 6 months.

    My oncologist is on board with all of this. We are going to do more imaging in November, and if the results have not improved, then my ND and I, with the approval of my onc, are going to start a regimen of DCA (you can do off-label use in the U.S.). Scary neuropathy is a very real side effect, but ND and onc are both confident that the side effects can be staved with a complimentary protocol of alpha-lipoic acid and thiamin. Onc says she has seen the neuropathy managed very well in this way.

    There is a DCA website, and a lot of controversial info on Evangelos Michelakis and DCA - but UCLA medical center has been working with him since 2007, and had him lecturing at UCLA just this past February.

    I am not trying to push any pipe dreams or fill you with false hopes. And, I am certainly not presuming or implying that I have a "right" or "better" approach to treament. The above is just my personal choice. I share my choice only for purposes of conversation and consideration. Will any of these work? Hell if I know! I am hoping that I will be around long enough to report on its efficacy. If I am not, well then, I will have my answer.

    Embrace your Beloved, and I sincerely wish you a loving anniversary. ~TC (boo-bee

  3. Thank you for sharing your truth about how disease makes slaves. You're in my thoughts.

  4. Nothing about cancer is fair!! It's an unconscionable beast, destroying all in it's path. My heart breaks for you and your beloved. While I haven't had a recurrence--yet--I know what it's like to be a slave, more like cancer's prisoner. Your life is on hold, every decision from what you eat to how you get dressed is overridden by the fact you have cancer. Oh, God! Please help us put an end to this terrible disease.

    Sending you love and prayers,

  5. My dear friend. You are making a profound statement here, just by telling it how it really is. When you don't have the energy to raise hell, be rest assured you have good friends who will continue to question, to shout about the lack of research and support and continue to 'raise awareness' of the crap-ness of metastatic cancer. Me, for one.
    And that's all I can say right now without crying.

  6. Dear Rachel - I have only just found your blog and am looking forward to reading the archives. There is a lot to be said on this metastatic cancer situation! Your post today touches my heart - understanding how cancer directs your every day, that you just never get a day off and it seems that life is just spent waiting... the unknown looming ahead. I too look in the mirror and wonder who that woman is.
    Your words are powerful - thank you for sharing

  7. Rach, I'm grateful that you took the trouble to give us an update, but the content is making me weep as I sit here. I feel so helpless thinking of you, but as Sarah said, rest assured that I will also be harping and snarking and posting about MBC next month. It needs to be priority one in any discussion of breast cancer.

    I would much prefer to get my Hermoine Granger magic wand to work, and do a big ol' "Reparo" spell on you, but failing that, I am sending you my love.

  8. I understand. I get it. It sucks. Its a pile of crap. Thanks for the honesty x

  9. I wish I had something adequately deep & comforting to say, but there are no words. All I can say is that you're all in my thoughts everyday. Actually, it surprises me that as my day unfurls I find myself thinking about & for so many of you, individually & a group. I am in awe of the love, care, respect & support you show each other. Thank you for sharing, all of you. Happy Anniversary, Sweetie. I so hope you are blessed with a boatload more!

  10. Dear Rachel,
    A bittersweet wish for a Happy Anniversary and I hope there will be at least 50 more anniversaries. I just want you to know one thing as the new twitter member and the new blogger: nothing has grabbed me more than everything I have learned about my sisters with mets. I have thrown my big mouth behind Dr. Love and it is with you and several of the others in mind that I have determined I am going to help grow the Army of Women so the research catches you and it catches you QUICKLY. You are my inspiration and you are part of the force that drives me to shift awareness away from the SURVIVORS and back to CURING A DISEASE. Somehow, all of that got lost in the sea of pink. I send love and support. AnneMarie xoxo

  11. Rachel, thank you, Sweets, for updating us. You are on the minds of many of us and I know I'm not alone in feeling helpless. I wish I had words to make you feel better, but all I can say is, I'm thinking of you and will be among those speaking out about the lack of funding and research for this crap disease. Sending much love and hugs. Happy anniversary to you and your special man.

  12. You know, this just sucks, Rachel. I hate that this is your reality. Hate it with a passion. It just...well...BLOWS.

    We need an effin cure, like, yesterday - so that you and all my other sisters (and brothers) with mets don't hafta be slaves to this crap anymore.

    Know that I am thinking about you and sending happy anniversary greetings to you and your beloved. Keep making noise, darlin'...

  13. Rachel, thanks for your honesty. It matters so much. Oodles and skads of love to you.


  14. Rachel,

    Your posting brings me to tears. I am so upset that you have to suffer and I hate this disease more than words can say. Right now, don't worry about raising hell....just worry about taking care of yourself.

    I wish so much that your reality could be so much better.

    Sending you cyberhugs....


  15. Profoundly poignant, my heart aches..Damn this Cancer anyway.

  16. Ah, yes, the "sea of pink" that was mentioned earlier. Why do I feel like the high tide is coming. Already, this morning, I was looking through the ads that come with the Sunday paper and every other thing advertised has a pink ribbon on it. October is the cruelest month for us metsters because regardless of how we try, that sea of pink washes over us. I was at stage 1 for 20 years (and very "pink")and moved to stage 4 2 years ago. I make is my mission to spread our word always, but especially for October 13th. Last year, I arranged for state and local proclaimations and was interviewed for an article for our local paper. This year, I will be in a Dana-Farber Cancer Institute newsletter and in a story that I did with my 27 year old daughter for her local newspaper. I know it's hard, but there are opportunities out there to spread our word. The only thing i ask when I am interviewed for a newspaper article is that they not publish it on the day their newspaper comes out in pink
    Peace , joy and strength to all! Deb in MA

  17. I for one remember your glorious Wedding day - the blueberries in the champagne glasses DURING the ceremony and a visit from a singing Elvis the night before were only a few of the highlights of watching, two beautiful people, share they love with the rest of us for a few days.

    Your are my favorite hell-raiser - lots of love and am determined to see you soon -happy Anniversary to you and Beloved.



  18. All I can say is that I'm sorry. I wish I could say or do something profound, but of course, I can not. Just know I care. There are so many of us carrying you in our hearts.

    Keep talking when you feel like it as there is much to learn from you. Thank you for your honest truth telling. And happy anniversary. Your beloved sounds wonderful. Hugs.

  19. Rachel,
    It blows totally. There are simply no words.

    I love you.

  20. I feel a deep sense of sadness after reading your article.....I don't understand why people have to suffer so much!
    You are an amazing person I know how much your beloved is suffering too! Each day look for one blessing and tell it to each other. Love is internal Rachel; and I'm sure that you are as beautiful as the day your beloved married you.
    I love you both and pray for you daily.
    Thank you for always sharing your life with others. Gail

  21. I hear your pain and distress and wish I could take it away. You are still the beautiful and strong person inside and the ravages of this dreadful disease cannever take that away. Your friends in cyberspace feel deeply for you and may their thoughts bring you comfort. Keep writing, your words are powerful.

    My heart is with you
    Much love Ruthie

  22. I feel as though you have been crawling around in my head. Often I feel the same sorts of things you talk about. It sucks that you are going through this, and I know what you mean about "state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with." It just about makes my head explode. The most important thing is that YOU are taken care of. As a fellow sufferer of mets breast cancer, I hope that soon I hear you are improving and that maybe even a miracle of remission is happening for you. I wish you blessings, and hope.

  23. You are not alone. Also, I just excerpted from this post on my blog. Thanks for writing so much that resonates with me.


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