Tuesday, January 3, 2012

The Ugly Side of Life


I have been gone lately.  Not physically away from my usual place of residence, but in every other way.  The past couple of months have been really hard on me.  The added pressure and stress of 2 adults and 2 babies living with me was hard.  Actually it was far too much for me to handle, being in the midst of other peoples problems (large ones) and living in the middle of my own trying to be healthy and happy and positive and take good care of myself while I got chemo every other week and mostly felt like poop.  It was as if I had absolutely no control over my life, especially in the one area that it mattered most, in my home sanctuary.

I made the decision to place my name on the waiting list for public, or assisted, or transitional housing…whichever you prefer to call it.  I had to get a doctors letter saying that my condition was so extreme that they (he) did not expect me to live longer than 12 months.  It was a quiet but extreme blow to my psyche (which I did not learn until later would be so damaging to my mental health).  I mean I have this paper that said, “Put this girl at the TOP of the list for housing because we think she will die soon”.  Not exactly what will pump you up into a positive mental attitude.  My decision to move into assisted housing was due to many parts but basically came down to one really large and unavoidable circumstance.  I simply could not afford to help my boyfriend pay for his mortgage any longer and he could not cover it all by himself, especially since he is unemployed (well he is now working part time as a ski instructor but we all know it is not a job you do for the money, it is for the pass and the environment) and working on going back to grad school.  He is getting roommates to share the house and rent with so that he can pay the mortgage.  He already has one and is now looking for another.  So now there are two people and two dogs at my old home that I loved so much…the yard! The sunshine! The garden and compost! The neighborhood feel! Mowing grass and doing yard work! Watching the hummingbirds at the feeder! Oh! It is nothing like where I am now.

Due to the chemotherapy eating away both the cancerous cells and the perfectly good cells in my body (such as brain cells as well as other cells) it has been hard for me to cope lately.  Emotionally I am a complete basket case.  Logically I cannot think clearly or in any way to be able to make rational or logical decisions.  I collapse in a heap, defeated, lost, confused and sobbing when trying to make up my mind about even the smallest of things.  Every time I receive chemo within the next 3 hours I can literally FEEL my body off gassing, no joke! I can feel the cells in my brain and eyes being literally eaten away and I feel as if I am sitting in vapors being emitted by my own body.  This feeling usually goes on for the remainder of the evening until I am able to fall asleep (which also is not easy due to the prednisone they give prior to the chemo to help the anti-nausea medicine do its job more effectively).  I am an emotional train wreck.  Of course it would make sense that my boyfriend and I would have relationship problems.  I can’t even deal with me most of the time, how can I expect someone else to be able to?  So of course we have had problems communicating.  I did not know what to do so my mother came down over Thanksgiving to help me pack my belongings and move them into a storage unit.  I had help from a dear friend.  Then on December 8th my mom came back to Portland and helped me get most of the rest of my stuff into storage.  On the 10th I temporarily moved into a hotel for a week to take care of some vet and doctors appointments (chemo) that I had scheduled.  This week I also ran around madly to try to get the paperwork together for my public housing to go through.  I drove to Seattle on Dec 17th to spend the rest of the year with my mom and to wait for my housing to hopefully open up by the New Year.  I arrived in Seattle on Saturday and on Monday I got a call from the housing authority of Portland saying that I had a spot and that I needed to come right away to secure it and sign a lease.  I drove back to Portland the next day to take care of business.  365 sq/ft studio, small but clean on the 4th floor facing west to get the afternoon sunlight.  On my way home I spent the night with my uncle and aunt who live halfway between Seattle and Portland because I couldn’t make a 7-hour drive in one day.  They are so wonderful my aunt and uncle! Then it was back to Seattle to try to visit one of my good friends.  We have been finding it very hard to get together.  I botched that visit by neglecting to stay in touch to set up a good time and day for us to get together.  I am beyond spacey and flakey.  Anyone who is close to me knows that.  I constantly forget important things.  Lately I have felt so out of control and hopeless that I avoid everyone and everything often blowing off really important things because it to just simply too much for me to handle both physically and emotionally.  Thank you chemotherapy. 

Christmas was spent with my grandmother and my mother’s family in Olympia.  Even though it was enjoyable seeing everyone all I could think about is how fucked up my life is, how I missed Thanksgiving, and now am missing Christmas even though I was physically present.  What holidays?! More like “chemo-daze” to me. Then we drove back home Christmas eve to take care of my diabetic and hyperthyroid cat (who I LOVELOVELOVE!!!) Christmas day my mother and I spent trying to relax and enjoy ourselves.  We mostly used the time to sleep from exhaustion and plan our following day, which involved driving to Tenino and meeting my aunt.  We used my uncle’s truck to move my things out of the storage into my new tiny place.  It took all day long and boyfriend helped too.  We didn’t get it all done (still things in storage, things scattered around my old house, my aunts home, my storage and my new apartment).  My life (my belongings) is/are scattered in 4 different places.  We had diner together and than my mom and aunt left to go back home as it was late and they had to go to work the next day.  I am now all alone in my place.  I cannot walk or move or unpack because of all the boxes everywhere.  I go out of my door and I am reminded about where I live…the hallways smell like smoke and the sick and elderly like greasy food and unhealthy lifestyles.  95% of the people I meet who live here tell me “You better watch out and be careful around here! There are drugs and druggies everywhere and you can get anything you want. Be careful about who you talk to.”  Those are the people who do communicate with me.  The others seem to have a fine time communicating with themselves.  I know that everyone has their own shit to overcome and I am trying my very best to not be judgmental.  I feel so completely out of place here.  I am surrounded by others who are not like me and I am uncomfortable.  I try not to make eye contact with anyone because they will just start talking to me and asking questions like “how old are you?!” “why are you here?” (like it is prison or that I did something bad to end up here) blah, blah, blah…..

I spent the first 5 days here sobbing and contemplating my life and how it came to this.  I watched Louise Hay videos trying to find a glimmer of hope among them.  They only made me feel worse.  I quite literally wanted to throw myself in front of a bus or train.  I hid from everyone and did not leave my apartment.  Locked inside with a mountain of boxes that I could not walk around.  I would decide to be more upbeat and begin to unpack a bit.  That would ultimately leave me confused and overwhelmed wondering where I would put anything, where anything was in the first place (you should try finding things you have packed away when you have chemo brain, impossible!) and if I should even unpack at all or just leave it in the box and put it all back into storage and run as fast as I could up to my mom to live with her in her small apartment in Seattle.  That opened up a new can of worms, changing medical insurance, hoping I could get insurance in WA, how long would it take, did I really want to leave Portland, etc. -too many decisions for a stressed out, emotional basket case like me to make.  I shut down.  I just sat in my apartment in front of open boxes sobbing not knowing what to do.  This has been to date the absolute lowest point in my life.  I never thought I would say that anything was harder than learning I had cancer but THIS WAS.  All I could think was that this, THIS has got to be the absolute bottom.  How could it be worse?  I felt completely alone, abandoned, lost, hopeless, afraid, uncertain, confused, beaten, overwhelmed, and like I had not only let down so many other people but now I am letting down myself and even my cat.  Where was the good?  Why does it have to be always so hard?  Didn’t I put in my time? Didn’t I put enough good karma into the world yet to start getting a little back?  I went to undergrad, then on to get two masters degrees and now I am living in assisted public housing, literally on less than $10/day!!!  Where was the future I wanted? The awesome career that I spent 8 years of my life striving towards?  WHY ME? WHY WHY WHY!!!!!??? What did I do wrong?  How can I even do anything right when I cannot even think?

The last week has literally been the lowest point of my life.

My mom came back down on Saturday with the intention of bringing me home with her.  She was very worried.  I was emotionally battered and lost.  I had a cold from the stress/move/chemo/detox/my new place/whatever.  I had nightmares every single night about being abandoned and lost and alone.  I stopped showering or changing clothes or caring about eating or anything.  I stopped functioning.  Complete shut down, mentally and physically.  Today is Tuesday, she left yesterday morning.  She helped me make my place feel a lot more homey and comfy and positive.  We did a lot of talking.  When she left she told me that her intention upon arrival was to take me home with her, but that she felt ok leaving me here because she felt that I was going to be ok.  I know it was hard for her to go.  It was hard for me to watch her go as the worry started creeping in at the edges again.

I never thought I would be in this place at this time at this point in my life.



I have made a momentous decision.  I have decided to take a break, maybe forever, from chemotherapy.  I feel it has done good, don’t get me wrong.  But I also feel that it has done equally as much harm.  I am completely imbalanced in every way.  Chemo has been doing a bang up job of killing my cancer cells but it has also done a bang up job of killing a whole lot of good cells as well.  I have not had a menstrual cycle since I started chemo, I have not been able to think clearly not even once since I started chemo, I have been nauseous, tired, ill, have had no appetite, and have had no energy for the most part since I started chemo.  I feel that it is time for me to take the completely natural approach to riding my body of this dead tumor material.  The PET scan I had back in August said “Complete Remission of Disease” but my oncologist says “you still have cancer that isn’t getting picked up on the PET scan most likely and we will continue therapy with you until the day you die!”  That day will most likely come sooner than later if I continue getting chemotherapy.  Really! The day I die! For the rest of my living days I will get chemo according to my oncologist.  This is NOT ok with me. 

The last appointment I had to get chemo was not a happy day.  I was very emotional and distraught.  I asked my oncologist for a break from chemo.  I have my next appointment on the 12th (next Thursday).  I am going to ask for a longer break, 3 months, until we do another scan to see if they are still shrinking or growing back (they will be shrinking!)
I am convinced that the chemo is no longer doing my body good.  I feel it is time for me to gain control over by own body again and walk my talk for real now…Green juices, vegetables, NO CHEMICALS OF ANY KIND and lots of kindness to my self in every way.  Acupuncture and some natural therapies (there are lots to chose from out there to fight cancer) are my new regime.  Detuning is of the utmost importance.  Exercise! Skiing! Climbing! Hiking! Yoga! Rebounding! Finding the joy in life again.

So no more chemo…

To all of my friends and family out there that I have been so flaky with during the past 20 months of chemo induced madness let me say that I am sincerely sorry.  I know that you all care and that you all have my best interest in mind and that you truly want to see me because you miss me and care. 
I have not ever wanted to be this flaky person.  I have never wanted to go through any of this in any small way.  But this is my reality at the moment and I am working on making it better.

Please know that just because my scans show that there is a decrease in the size of my tumors etc. that this DOES NOT MEAN that I am feeling good by any stretch of the imagination.  I STILL FEEL THE SAME AS I DID 20 MONTHS AGO if not worse.  I still have been getting chemotherapy every other week for the last 20 months! Frying every good and bad cell in my body and in my mind.  I am sorry if I am not the Laura you used to recognize.  I don’t even know if that same person is still here or not…I don’t remember anymore.

I know it will take literally months to detox my body from just the chemo alone.  Hopefully the Laura you all know and love will be back in some new and different way soon.

I am literally living on less than $10/day.  Anything at all anyone could do would help me out beyond belief.  Gift cards that you got for Christmas and don’t think you will use?  Gift cards to Trader Joes, Whole Foods, Fred Meyer, Target, Costco, whatever I can use any of these no matter if there is only $1 on it.  You can also send me a private message if you wish, those would go a long way right now for giving me the mental and emotional support I need as well, even a card is wonderful if you prefer the old fashioned way.  Tell your friends, tell them to tell their friends.  You don’t need my permission to share my story with others.  If you know me well at all, you will also know that I am pretty much an open book.  I wear my heart and emotions on my sleeve and I have been withdrawn lately.  I know something is up and I have avoided telling my story for so long now it hurts.  I need to get this out of me and into the universe knowing that I am supported and loved in every way and every minute of every day walk in gratitude and joy being present in this moment and grateful and fortunate for it all…Ahem….



I still have some t-shirts “Cancer Can Suck It!” if anyone is interested just let me know.  I also have “Cancer Can Suck It” “I’m A Cancer Assassin” buttons/pins for sale.  And as soon as I can afford gas to go back to the coast I will have more supplies for making mobiles. 

My new address is:
4400 NE Broadway #406
Portland OR 97213

I would love to hear from you.  Right now it is time to make some green juice and go for a walk.  That is at least a good step in the right direction.

Peace, love, light, health, joy, gratitude and many blessings to all in this wonderful New Year of 2012.  Every day is a blessing.

43 comments:

  1. San, I love you so much. I think you've made the right decision regarding chemo. You are a dear friend. I wish there was a way to explain why you have cancer. You are doing the best you can. Give yourself a giant hug from me.
    xo
    Jen-i-tals

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  2. Oh Laura, I'm so sorry about what you're going through. You don't deserve this. No one does. Please find someone to talk to. Are you speaking with your mom every day or at least really often? You need to be emotionally supported right now. Give yourself a little more time to make the adjustment. Perhaps stopping chemo is the right thing to do now, I don't know. I hope you can find some resources there to help you in this challenging time. Things will get better. Hang in there. People do care. I know I do. My best.

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  3. Laura,
    You have shared your incredible journey quite eloquently.

    The job, health, home, roomie, moolah road lately has sucked and I am glad you decided to share it...letting it out may help reduce its power over you.

    Chat with PotPie as you try to get settled for sleep...I have found that Marbles and I can have a longer session when I 'knead' her back as I talk. She has arthritis and I bribe her that way... ;-)

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  4. Laura,
    Cancer isn't going to win. You are strong and this journey has brought out the best, not the worst, in you. The ability to share your most vulnerable moments amazes me. I know how desperation feels. This is it. Look for a little something in the mail from John and I. We are rooting for you.
    Kim

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  5. Oh Laura,

    I'm so sorry that all this is happening to you. I totally respect YOUR decision. Do you have a support network other than family? This is the time to maybe seek this out.

    I know that chemo sucks.

    Maybe some counseling with a person qualified in health-related issues might help. Thank you for your candor and honesty.

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  6. it takes courage to take this kind of decision. And since it's yours, it's a good one. One that will reunite yourself.
    Please receive all these love and support vibes from france coming right at you
    thank you.

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  7. Laura...thank you for sharing your truth here. Cancer is most certainly the ugly side of life, and unless a person has really been there it can be difficult for the well world to understand. To that end, I don't think you need to be apologizing to anyone - none of this is your fault - it's cancer and it is a huge pile of crap whichever way you look at it.

    The only thing I can say at this point is, having had my own worst moments in the last year, the the thing about hitting rock-bottom is that the only way is up. But it does take time, so the best thing you can do is be kind to yourself and allow yourself to grieve because I think that's what's happening here. True friends will understand and be there for you when you are ready to reemerge. And just let family help you, as hard as that can be.

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  8. So sorry you having such a tough time. It's great that you are doing some things holistically to help, though. I googled financial support in Portland and found this link. Not sure if you already knew about this agency: http://www.komakcares.org/services/

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  9. Laura, here are a few links. It would be great if you could get someone to help you make some contact with these various folks:

    Financial help in Oregon:
    http://www.compassoncology.com/patient_assistance_programs.php


    Emotional support in Portland, OR:
    http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/cancer-social-work-services.cfm This is a good resource because social workers help find community resources as well as offer emotional support.

    If there's someone who could help you coordinate an online thing, there's a service called Lotsa Helping Hands that helps you set up a calendar to let people sign up to take you to appointments, bring meals, help you clean your apartment, etc., etc. It was started as part of a caregiver/eldercare association, but it works for anyone who needs a way to give friends and family practical, concrete ways to help you:
    http://nfca.lotsahelpinghands.com/caregiving/home/


    You are not alone. We might not all be in the right real-world neighborhood, but we are here in the blogosphere. xoxo, Kathi

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  10. Thank you all so incredibly much for your information and support! Tami and Kathi thank you for your links!
    Jen, KatBoxJanitor, Nancy, Kim, Beth, Karin, Cancer Culture Chronicles, thank you so much for your kind words and support. Things seem to be slowly getting better but I can still feel the fear/anxiety/hopelessness although it is much less prominent than it was last week. I am so glad to have your cyber support out there and was feeling quite isolated without any internet (until this morning..just got hooked up-two weeks of my budget well spent). At least now I can communicate with you all.

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  11. ((hugs)) to you Laura. I'm so glad you are getting some good information here. I am still processing everything you said, but know I'm thinking of you.

    Katie

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  12. Oh Laura, please know you are not alone. So many of us are here for you. I know it's not the same as being in the same room, but the support is solid. We hear you and stand by your decisions. Hang in there, focus on healing any way you can. Sending lots of hugs.

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  13. Laura, PLEASE PLEASE PLEASE ask your doctor for anti-depressants. I have been living with metastatic breast cancer for 9 years and have been in this depressed place also. You might not want more drugs but believe me, they will help you cope.

    Here is my blog URL: http://www.jillscancerjourney.blogspot.com


    Wishing you weller,
    Jill

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  15. Laura, I live thousands of miles away from you, but, as you know, Cancerland is a mighty big planet :)
    When I was having chemo I was not only sick (as you are describing) but I was on the point of insanity. I was able to work out why: the steroids, dexamethasone and the 'coming down' days. It occurred to me exactly what size hell drug addicts live in. I know from the experiences of other Cancer Girls that it is entirely possible to have a break from chemo. There is no point in being destroyed by poisons in preference to being destroyed by the fecker cancer! Getting outside and connecting with nature will do so much good for your spirit as well as your body. I totally understand your grief at the loss of your yard, garden, etc. But you are a clever gal; look around your town and connect with someone who you can keep company with in the garden..maybe an old person. Churches will recommend someone, even if you are not a church person. You might even walk past a place. Get to know the person. Connect! :D I don't know how the RSPCA (and the like) works in the US but in Australia they welcome dog-walkers/visitors. I am sure you could find an 'occasional' dog. So good for the soul! When a person is as dismantled as you have been, it is easy for him/her to disconnect from the fact that people are basically very, very good; it is a matter of simply asking for what you need (garden, occasional-dog) and you will be given it. Take care xxx Kerry

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  16. Katie,
    Thank you for your warm thoughts.

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  17. Stacey,
    I hear ya and feel ya loud and clear and thank you so much!
    I am doing my best, so far I have made green juice for breakfast yesterday and a green smoothie for breakfast today. Salad for lunch and miso for dinner with snacks in between of almonds and such. The chemo has really been doing tricks with its detox....yesterday as I posted my blog everything I saw in front of me on the screen was an exact mirror image...I was spelling backwards in my head!!! Crazy!!! I have noticed so much being OFF of chemo that I know was there before but I couldn't see it because I was so whacked out from the toxins!
    I hope you are dong well my friend. I think I am seeing a light at the end of the tunnel now.
    Much love

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  18. Jill,
    Thank you for your advice, I really mean it. I have stopped my anti-depressant months ago, cold turkey, mostly because I forgot to take it....chemo brain...you know the story, but this is definitely something that I forgot about and worth revisiting.
    It really means a lot to know that you care.
    Much love

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  19. Oh Kerry!
    I so needed your words of wisdom! Thank you from the bottom of my heart and soul! You have just reminded me of something that I have lost (or misplaced shall I say) and that is that THE UNIVERSE PROVIDES all we have to do is ask, or better yet put out what we want to get back/be the change you wish to see/what you focus on expands...
    I cannot thank you enough for your impeccable timing and wisdom.
    Many blessings and much love to you.

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  20. Call OHSU social workers:
    Katie Hennessy 503 494-9244.

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  21. Laura, Thank you for sharing your story and reaching out to get help. I have shared your story on G+ and will also share on twitter. I recommend to you a support group on twitter #bcsm. They do a tweetchat on Monday evenings at 9pm ET/ 6pm PT. They are folks who have been through chemotherapy with breast cancer, lymphoma etc or are caregivers...anyway they are warm and caring people and I believe they can be there for you. I will share your blog post with them.

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  22. Laura... my first attempt at commenting didn't go through. I'm newly diagnosed with breast cancer and just beginning to tap into the support available online. Do you have a paypal account? Its a free setup, and would make it easier for people to help you out.
    https://www.paypal.com

    Once you have an account... post link to it.

    There's a lot of us out here who can help a little, which will add up. It can be expensive going the natural route that your body sounds ready for. Insurance covers crazy expensive chemo...but not the health food grocery bills!

    Shera

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  23. Hello friend I have never met....I am sending you a virtual blanket of gentle kindness and snuggles. And some soft kleenex and a bite of the organic orange dark chocolate I got for christmas. I am so sorry you are down...and am so glad you have reached out. We are holding the net for you.....know that we have you , that you are loved and not ever ever alone.

    Please open a payapl account so we can send you stuff and so I can buy a t-shirt.

    Much much love and thoughts of powder snow and bluebird days....

    Robyn

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  24. Sending you so much love. I am so glad you are detoxing from the chemo, I KNOW you will feel better. Enemas, can't stress it enough. Just know if you need a pen pal, phone pal, etc. I'm here. Been doing the holistic route almost 8 years now. *Hugs*

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  25. Laura, Please hang on. By the ends of your fingernails, I know. I've been there under different circumstances but the Internet didn't exist then. The Interwebs are a powerful beast, & it looks like a lot of people care deeply for you. I pray things get better, please give this a chance.

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  26. Kathleen,
    My Twitter Pal Kathleen was kind enough to send me this post. I'm very involved with the Twitter Tweet Chat #BCSM even though I've been fortunate enough to never have Breast Cancer. What I do know is this is the most supportive gathering of people who know really know as many aspects of Breast Cancer as you can imagine. There are those who have experienced Breast Cancer, those going through treatment, supportive folks like me and amazing Physicians.

    I attempted to see if there was a Angle Food Ministries in your area but in NC they are no longer providing this program. I would encourage you to reach out some more because depression is a real issues and it likes to keep folks isolated. If you need help please seek it for there is no shame having this disease creep in when you are literally fighting for your life in so many different way.

    Please know I'll keep you in the LIght as we Quakers say.

    Lisa Fields

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  27. It's a hard choice, and one that I made myself - all alone, since my husband left me when I was diagnosed - so I had my two children, and myself, and many battles with my doctors.

    But over 5 years later I am cancer free, from an aggressive invasive cancer - with NO chemo.

    We know what is right for our bodies - you are doing the right thing!!

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  28. Hang in there girlie. I know it's gotta blow your mind to hear the reason you have been put on the top of the list for housing assistance. And I hope you don't wanna slap me one for saying this but PLEASE for your sanity try and focus on that you are gonna be at the top of the list. I hope you feel better in your head and your body. Come on with good things, 2012!
    Rachel

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  29. Laura, your story really made me understand how you are feeling! You are so brave and strong despite the chemo effects -.and my heart goes out to you. There are awesome support people online, in Twitter, Facebook, and I know your cries for help will be answered. I will be writing you, and really hope that each day will bring you back to health. I know it's a long road - but you have reached out, and it's time for others to extend you help and hope.

    You will be in my thoughts. Please know you have many friends who are far away but want to help. Best wishes Nat

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  30. Rachel,
    Thank you so much!!!!
    I will call today. XO!

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  31. kdhhealthcomm,
    Thank you so much for sharing! I will check out your site as well and your resources. I highly appreciate your support!

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  32. Shera,
    Thank you for reminding me about the paypal thing!
    Chemo brain!

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  33. Shanna,
    YOU inspire me! I am making my own milk as soon as I can. I have always peeked in on your blog on a regular basis but I am definitely going to be coming it more thoroughly now :)
    I am so glad to hear you have been doing the holisitc route for 8+ years now! I know it can be done!
    Thank you so much for your support!

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  34. Le Pirate Rouge,
    Thank you so much for your comment and support!
    I never realized just how much I relied on the internet (and my cyber friends) for support until I didn't have it for a while.
    Stay healthy my friend!

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  35. Surviving Cancer My Way,
    Indeed! We do know what is best for our bodies don't we! I think that we all tend to forget it from time to time (or ignore it completely!).
    And we all have our own struggles too, which we also forget. I am so grateful to have your support.

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  36. Rachel,
    Thank you my friend! This year is already starting off on a good vibe. Im sure it will be a great one. Day by day...

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  37. Nat,
    Thank you!
    It really is amazing how small the world is. It makes you forget just how large of an impact one person can make in the world. Thank you for reaching out and for your support!

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  38. Hi Laura - Do you know about Dr. Weizer? He's a naturopathic doctor that works at the Providence Integrative Medicine Clinic (east and westside) in Portland. He's awesome! Has had cancer himself so he knows the drill. He's been an indispensable part of my team since being diagnosed with breast cancer last summer. Has an arsenal up his sleeve of ways to help make it through treatments and heal from them too. Here's a link to his website if you'd like to find out more: http://www.drweizer.com/
    Best of luck to you!

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  39. Oh Thank You VDay Sings!
    I checked him out and he has my vote! I actually live a block from the Providence east and I am definitely going in to see him when I return to Portland next week. Are you familiar with the Sisters for Survivors group in Portland? I have met the organizer, Tonya, and she is wonderful. You might find some things there that are helpful for you.
    Blessings of health and joy!

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