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Friday, March 15, 2013

Anger

Do you remember those toys you had as a kid, those Clown Blow-Up Punching Bags?  We called them "boppers" and in my circle, every kid had one.  They were as tall as your five year old self and were good for releasing aggression.   You'd fill the bottom with sand, blow it up and then punch the heck out of it.  No matter how hard you punched, the smiling clown would always pop right back up, happy to take more of your abuse.

After time and lots of punches, the doll would start to sag.  It'd take your punch and then lie on the floor for a second, gasping, before slowing rising for the next punch.  It's white plastic skin would start to get a little wrinkled, and your fist would sink deeper into his belly.  Eventually, the air would escape and the punching bag would be just a heap of useless plastic puddled on the floor, defeated forever.

I know how that clown feels.  This latest round of Gemzar left me pooled on the floor, whimpering, "I give up."

Immediately after infusion last week, I came home, went to bed and stayed in bed until Sunday.   No steroid energy. Just pain, nausea, vomiting, weakness and illness.    Chemo came at me in a fury, like a 500 pound Sumo wrestler intent on giving me the beat-down of my life, and after my most recent and past beat-downs, I just am not able to pop up the way I used to.  After seven chemos, the air is going out of me, my skin wrinkling.  My times lying on the floor, gasping, are getting longer.

Sometime last week, lying in my drug-sweat stinked sheets, teeth unbrushed with vomit crusting on them, watching my stomach and legs shrivel with weight loss, unable to eat, drink, pee, walk - hot flashes alternating between shivers, a migraine along with pain from shoulder to liver to hips and legs, too sick and weak to pick up my head to even look at a book, a TV show, too weak to even turn over, I had my first moments of fury at this disease. I could not move, how could I have energy for this ire?  Yet, internally, deeply,  I was raging was how it was to be for me, and worse, for my family.

This was new.  I have never thought, "why me?"  I am a "why not me?" person.   Bad things happen to good people and there is no rhyme or reason to the chaos life brings.  So, through all of these years, I was accepting.  I got cancer, it sucks for me;  I would handle it.  My job now was to prepare my family as best I could.

But Goddammit!!  My body should be strong: I should be working, planning college visits with my son, looking forward to family events, worried about my wrinkles or widening waistline. I am too young for this, have worked my whole life, and now should be planning for vacations I dreamed of, time alone with my husband instead of planning my funeral.   Why is it that I am in a wretched body, on a good day watching TV in my iPad in bed, on a bad day writhing in agony between drug-induced sleep? This parasite is killing me off, and it has to do it in these incremental doses, making me weaker with a longer recovery time each bout of illness, my children scared at my bedside, my husband having to do everything.  It can't just take me, it has to torture me first - and my beloved family.

I was furious.

Anger, Kubler-Ross said in her book "On Death and Dying" is one of the five stages of grief, along with bargaining, denial, depression, acceptance.  That seemed too simple to me.  For my part,  I went straight to acceptance.   For me there is nobody to be angry at, or bargain with, at least as far as getting cancer is concerned.  I don't believe in a deity who hands disease out like a dealer handing out blackjack hands.  "Lucky you, you get blackjack."  "Sorry, you lose, I'm taking all your cards."  It just made no sense to me,  I can't be angry at that.  Tragedy happens daily: tsunamis, car wrecks, disease - why not to me?

That's not to say I've never been angry.  There is righteous anger I have felt at the way a few people in my life have treated me during the course of this disease; but they have a choice and control over what they do  It's not a fluke.  They deserve my disdain, their behavior is deliberate.

I also have anger that so many undeserving in this world are given what I have been denied, like those who waste their lives in addictions.  I see them, trading all of life's beauty for the next high.  I can't help but feel I deserve what they have thrown away, and I should have the right to pull the life force right out of them and put it into me.

That kind of anger feels reasonable and justifiable. It is directed at a specific target for a specific reason, and it is easy to push away.  People make their choices, both good and bad, and you can't do anything about it.  Sometimes, if you try, you can even find compassion for people who have lost their way.

This outrage I felt while so sick was different.  It was animalistic.  Undirected and wild. A coyote in a trap will bite.  It's pain and helpless frustration and fury that this was happening to me. When you are that down, when your body takes blow after blow after blow after physical blow, it seems anger - no, rage -  does come welling up without reason.   Somewhere inside your vomiting, ache-filled body and pounding head, it is there.  Pure anger, at just being sick.  Why me?  Why?

But I have choice and control too.  I have taught myself to focus on the tremendous good that has come with this disease, and be accepting over what I can't do anything about.  To steal from the 12 Steppers:  I am powerless, so all I can do is take it one day at a time.  Nobody is promised forever.  Nobody is promised not to suffer.   Acceptance is also part of the deal.

So again - for now  - I recover.  I once again, oh so slowly,  rise out of the battering.   On Saturday, my husband helped me to the bath and changed the sheets.  I brushed my teeth, put on new clothes, and came out fresh, clean and with my anger dissipated.  Back in bed, I saw a squirrel play on a tree outside my window, and smiled when my dog jumped in my bed and pawed me, twice, to try to get me out.  She had thought I'd be out for good, seeing me in the bath, and she was angry too.  Enough of me lying in bed, come play!

Gratefulness and acceptance returned.  I had a sunny day, clean sheets, no more sick layered on me.  The nausea and pain had mostly passed and while I was as weak as a human could be, taking my first shaky baby steps again,  unable to even stand and pour some coffee,  I could start to try to eat and gain strength.  I am luckier than some:  I had help,  I had people checking up on me.  I had a little cat who didn't care if I was angry or sick, who just just wanted to curl up next to my head.

I saw the doctor this week and told him how sick I'd been, and for the foreseeable future, I will be giving up on chemo.  We will try TDM1 as soon as they get it in their clinic, and in the meantime, I'll have yet another CT to see what is going on inside.   Nothing pretty, is my guess.  I think cancer may be invading vital structures, causing these illnesses.  I hope I'm wrong.

I'll try to survive for a little more, because that is what we humans do.  We get punched, we get knocked down, we get mad, and we get up again.  Over and over, until the air is gone.

Luckily, there's still some air in me.

.

76 comments:

  1. Wow this is intense Ann, thank you for laying your life circumstances out so clearly. I want you to get well enough to visit a college or two with your wonderful son, you both deserve it. XXOO

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  2. I care about you, Ann, and when I go home to be with the Lord, I hope to see you face to face and build a wonderful friendship with you! It is time to open up your heart ~

    Have you asked “What do I have to do to go to heaven?”

    “If you confess with your mouth, Jesus is Lord, and believe in your heart that God raised Him from the dead, you will be saved.” — Romans 10:9

    “To all who received Him, to those who believed in His name, He gave the right to become children of God.” — John 1:12

    He asked, “‘What must I do to be saved?’ They replied, ‘Believe in the Lord Jesus and you will be saved.’” — Acts 16:30,31

    Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.” — John 14:6

    God isn’t waiting to judge you. God isn’t waiting to condemn you. He’s waiting to receive you with mercy, with love, with open arms, and forgive all your sins. Will you come to Him?

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    1. Really, THAT'S what you have to offer Ann?? I'm sorry. Pray for her, with her, but preaching? Double-checking she's a believer??? Don't get it. God Bless you Ann, I'm sorry you're going through this and wish only the best for you and yours.

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    2. Thank you, Deb.

      I know Carol meant well. But, Carol, I'm an atheist, have been all my life and am not changing now. I respect all beliefs and am happy people find solace in religion. I hope they feel the same for me and what I find solace in which is the beauty here and now. While I'm a non-believer, I am grateful for prayers because I understand the wonderful feeling of hope and love behind it. I take your post with the kindness that it was meant to have. If you want to start a friendship, here and now is the time to do it.

      Please, no more preaching to me, okay? I do value you and hope you stick around but no more scripture. Please value my beliefs as much as I value yours. If that is the only way you can relate to me, then it will be impossible for us to have a friendship. And I do have very many religious friends.

      FYI: My last name is Silberman and I likely would not be a christian if I did believe. :)

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    3. I know Carol meant well and is def not trying to "preach" at you Ann. Thanks for understanding that and responding as you did. Sometimes quoting scripture can come across as so pious but the truth is some people say they arent 'religious' when they have never actually just read the damn bible!

      Deciding what to think about God based on church and people who are christians is like people thinking they know me based on what I post onmy facebook page.

      I think Carol respects your right to choose your own beliefs. She was just trying to make sure you were fully informed on the choices :)

      It really is hard sometimes to know how to share that stuff without coming across as 'preachy'!

      I think everybody who reads your blog feels a sense of helplessness and frustration at not being able to really do anything for you other than commiserate. I know I do!

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    4. Hello Ann, Yes, I was speaking to you with kindness and love. I remember you stating that you were athiest and wanted to let you know how much God loves you. The best way is through scripture. Of course I respect you and pray for you often. Thank you Missy, I appreciate your words. And to you Ann, thank you for not being offended (too much). I will never stop praying for you ~

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  3. Oh damn. I know that the longer intervals between posts isn't a good thing, but it really stinks that you're going through this. Yes, please stop taking the chemo. Get stronger and feel better. I know that love alone isn't enough to save anyone (oh, if only!) but there are so many people pulling for you, including me.

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    1. Thank you Anne.

      Let's just hope TDM1 works for me. I'll never be ready but I do want to get my youngest off to college! Seems a long ways away right now.

      Some of the reason the intervals between posts are longer is I need so much sleep. I'm waking up until about 1:00 these days. Who knew a person would sleep that much? 13 hours at night and then sometimes a nap during the day although I can take a ritalin and get through it.

      I also need to write down the ideas I get for posts. Gone, in the blink of an eye! :)

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  4. So go, you brave T-DM1 gals; I'm thrilled for you and the families who love and need you, and excited to spread the word about something that's giving metastatic breast cancer patients hope for the future.

    I found this quote while looking up info on TDM1! This sounds so exciting Ann, I pray it doesn’t have side effects like the chemo you have been on. I don’t know how you do it; I hated chemo and wanted to give up after my first couple treatments. You have a strong will! Some are calling TDM1 the miracle drug and doctors don’t care for the name. I love it, Bring on the Miracle!

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    1. TDM1 is a good drug - but it's not a miracle. Herceptin was touted as a miracle too, and I've progressed on it. Although no doubt, it has probably been miraculous for early stagers who may have progressed and now never will because of it. As for me, who knows, I might be dead already without it.

      I know lots who were in the TDM1 trial. Sadly, many progressed and had to drop out. Many got NED. You just never know. I know one lady who was NED ten months before it came back. I know one who had cancer everywhere and it disappeared - until it came back into her brain (TDM1 doesn't cross the blood-brain barrier).

      It can be a great drug and my doctor seems to want me on it too. But, I learned after my liver resection that managing expectations is important. I truly thought I'd be cured then and I didn't even get months before it came back. I do not have a survivable disease, on any drug, no matter what I do. However, maybe I'll get lucky and get what I want - to see my son go off to college. Maybe I'll get even luckier, and see marriages and grandchildren. Maybe I'll feel better for a few months and have the energy to finish the things I want to do, and make a memory with my family. That would be good.

      Hopefully, I'll be around long enough so that people are whispering about me "Wasn't she supposed to be dead by now?" That would be awesome.

      Maybe (like many) it won't do anything for me. I believe it will work and hope so. But I am not going to be unrealistic about it. I have learned not to get my hopes too high because when you do, the crash is very hard.

      By the way, the new name is Kadcyla. I don't think I'll ever remember that, I've been following it for years as TDM1. :)

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    2. I just saw my doctor yesterday -- he says the manufacturer now has enough TDM1 for us to start taking -- as soon as the insurance companies approve it! Praying for you and me, to start on it right away! I agree, Gemzar was really hard and I just had to stop it too. It didn't work so well anyway. Hopefully we'll be planning graduation parties!(My daughter is 16 and son is 14, so . . .)

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    3. Hope you get to see that graduation, and the marriages and grandchildren, too.

      When I was first diagnosed, I feared I would never see my youngest finish college, see her marry, or any of my kids give me grandchildren. Well, this May, I saw her graduate with honors. Earlier, in March, my older daughter made me a grandma. So far, that is two out of three. Next goal, to be around for when my grandson goes to kindergarten. And maybe even another grandbaby or two.

      I wish there was a cure, not just for my and your cancer, but for the the lymphedema in my arm, the neuropathy in my feet (gift of chemo), and a way to not have all the side effects of femara and faslodex (yes, both), and the other side effects of all the treatments we go through.
      But each day is a gift and there is still much to be grateful for. I know you are not a believer, but I'm praying for you anyway. I'm sure you won't mind if I promise not to preach. May this new treatment help your cancer to go in remission and let you feel good while you are going through it.
      Elizabeth

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  5. (((Ann))) I pray that you get some relief and that the TDM1 is your kryptonite. You still have some air left as evidenced by this post. You hang on!

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  6. Thinking of you; just thinking of you and sending hugs. I try to be as grateful and accepting as you; not always successful, but you set a wonderful example!

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  7. GULP! Pray that TDM1 is in your cards soon. I want you feeling better please soon,,,,,,,,,,,,

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  8. This.just.sucks. I hate f'ing cancer so much. I don't have any platitudes to offer you, Ann, just...wish this wasn't happening. And am hoping very much that you get to see your son graduate. Hugs. Strength.

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  9. I witnessed a man make it until the mileestone he promised, his daughters 13th birthday and first formal dance. It was so important to them all. I am praying that your son gets all new books and you watch him go to collage. Get strong, I wish I could cook for you, Steve loved my cooking, so did his wife she doesn't cook. But it is so importaant to keeping strong. I know our faith differs but where you cant see a God handing out illness, I see a God who is wanting to answer prayer. So I pray for you dear and hope for you to reach your milestone. Hugs Anne

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  10. I had a feeling that things were not well with you. You are full of words, and that long space with no words shared was not a good sign. Now it is my turn to sit and stare at the screen and try to make my thoughts become words of encouragement and comfort...and I can't. This sucks and I am sad for you. Praying for TDM1 and you to meet soon.

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  11. Your body may be weak but your mind is still strong!

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  12. Dear Ann,

    Such posts must be as agonizing to write as they are to read. I'm so sorry you're going through this cancer nightmare. It's probably a stupid question, but do you ever wonder if the treatments are more toxic than the disease? It sure appears that way so many times.

    I have a friend who had breast cancer (stage 3) and she chose to not have any treatment, not even surgery. She lived ten years, following diagnosis, and said she had no regrets at the end of her life, because she did it her way.

    I'm not sure how I feel about her choice, but, as you put it here, even in the face of grave illness, we still have choice and control over a few things, and that is satisfying in its own way.

    Hope you're feeling stronger today.

    Dee

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    1. I guess I'm at the point where the treatment IS AS toxic as the disease. (Not more, not less.). But, it hasn't been that way until now.

      If you read my blog from the beginning, you can see I've done 7 different chemos without these problems; it is only now with this one that I've become ill. It could be disease in my liver is preventing me from processing the chemo out properly - who knows? I don't.

      Is it for that reason that I don't understand your friend's choice. At Stage 3, she could have lived her full lifespan had she done treatment. Yes, it was her choice and I will never tell somebody what they should or shouldn't do when it comes to cancer or how they want to spend their days. She made her choice, I'm sure fully informed, and I respect that.

      But, all these years I've been on chemo have been fine. I have felt tired but not sick. I'd never have not given myself the chance to live my life.

      Now, of course, at Stage IV, all I am buying is time, unlike your friend who could have bought herself a cure. But I want that time. If I do nothing, I won't get ten years, I'll get a few months. So, I am going to stay at it until my son is in college, or at least, try. There may come a time when my doctor says, "We can't do anything for you" and I'll try and accept that news but I'm not ready for it yet. I don't think my doctor is either! :)

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  13. I've been reading snippets. That's all my mind has been capable of grasping these past several weeks. I know you don't want pity but G-damn it, when I read your very descriptive words of the sheets and the clothes and everything else, I don't care whether you want to hear it or not, I want to say it: IT BROKE MY HEART.

    I know you went straight to acceptance and I've watched you always speak with a strong and truthful voice. You managed to get some of that snarky Ann speak into this post and that makes me shake my head, with tear filled eyes but a smile on my face as I think, "That's Ann......always managing to pull a wise crack out of the worst situation."

    I'd still like to know what the hold-up with the TDM-1 is.... and I hope that it works for as long as you need it to work. As the very fearful Fearless Friend, when people ask me about mets, somehow I always hear myself saying, the hope is that you never run out of treatment options. I'm damn angry. Your observations are spot on..... I've found myself with little patience for those who HAVE OPTIONS and choose, instead to damage themselves... and then, I remember to be more tolerant.... but mostly, I'm out of patience. When good people who mean much to me (like YOU) are doing everything they can with such limited options and know the outcome while others have complete control over an endless supply in their bags of tricks.... DAMN it DAMN IT...

    I send love. I treasure you. You have three great guys around you...... and a whole bunch of us...

    xoxox
    AnneMarie

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  14. I was thinking about your anger. I remember once, shortly after the whole roller coaster ride started. Tim and I made plans to go together and take pictures of the autumn leaves, just be together. It was a day of motorcyclists as well. One cruised by us at a high rate of speed, no helmet, smoking a cigarette, weaving in and out of traffic on the curvy mountain road...and out of nowhere there was RAGE. Overwhelming sickening rage. I was careful and sensible, and there was this fool tempting fate on all sorts of levels. HOW FAIR WAS THAT?!!! And the anger was so overwhelming that I told Tim to please take me home, that I was not fit to be around people. There's been blessedly few times that I've dealt with this, but the level of anger, when it came, was always a shock. I'd forgotten that moment until you described your own rage.

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    1. Yes, it's really hard to see people playing with what you are trying so desperately to keep, isn't it?

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    2. Aw, Ann, my friend...your struggle is far more serious than any struggle of mine, which makes your anger way more justified than mine.

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  15. Ann - even though you have left BCO behind you, I still keep checking on you. It breaks my heart to hear how ill you have been. I am a non-beleiver too but I "pray" TDM1 does the trick. Big hugs from across the seas. (((((((((((Ann)))))))))))

    SuePen from BCO

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    1. Hi Sue - sorry I didn't write before. Glad to see you here!

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  16. Hi Ann,

    I'm sure I don't fall into the typical "demographic" of people who read your blog. I am a man, I'm healthy, and I don't personally know anybody who is suffering from cancer (knock on wood), though it did take my grandfather many years ago. I'm a writer for a medical company, and in researching cancer articles, stumbled upon your blog. It drew me in and I read it all, start to finish, in a couple of days.

    I admire how you have been able to use humor throughout these last few years, even in the face of what many of us would consider unbearable circumstances. You are one of the most positive people I have ever had the chance to get to know, as much as we can "know" somebody through a blog. You are certainly allowed to feel anger now. Most of us would have experienced that emotion ages ago. I am angry, too. So angry for you and all that you have been dealt. Life truly is unfair.

    You are a courageous woman, full of spirit, strength, and good will. I truly wish you the best, and while I don't believe in a Higher Power either so I can't hold out for a miracle, I hope that - at the very least - you are able to reach your self-imposed goals. In the meantime, I'll be here, reading and cheering you on.

    Thank you for sharing your story, difficult as it must be.

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    1. I am impressed you read the entire blog! I am not sure I could do that now. :) Thank you for your kind words and I'm glad I have a new reader, especially one out of my demographic. :)

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  17. Ann,
    So sorry to hear what you've been going through. I will keep praying for you and your family and hope that God will bless you with time and feeling better. I pray He will be with you and help you meet every one of your heart desired goals.
    I understand your anger. I've been struggling with it lately myself. I'm glad you have family, friends and pets to help you. I don't know how people get through this without people who love them and personally i couldn't without God also. But I do not want to preach to you. I only want to let you know when I think about you I hope and pray for you to feel well.
    Keep fighting and writing when you can. You are an encouragement!

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  18. Maybe time to stop taking chemo? Is it worth it at this point? Don't feel like you're letting anyone down if you quit. It's your life and quality is important.

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    1. There will be a time as there is for most of us - but not yet. So far, it's just one chemo that has done this. We'll see how TDM1 does. Can't quit until I get the "miracle" drug. :)

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  19. Ann, you have every right to have anger! Cancer gives us all anger. Cancer took my mom in 10 months when she was just 49. She didn't have time to get mad she had to stay Strong for everyone else. You know many send you hugs, good thoughts, and all of this is good. I am sharing some of your anger against cancer because sometime anger gives you more strength.
    Judi in Reno

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    1. Judi, I had no idea you went through that. Nice to hear from you. Big hugs to you and you family.

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  20. Oh, Ann...rest and let the air within you gently swirl around to help you up again. You are in my prayers.

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  21. There's such irony in this post, as I read it today... I was just thinking about you over the weekend and how upbeat you've been through this all, at least what I've caught up to recently and I was wishing my mom could be more positive like that -- I couldn't help but wonder aloud if you'd experienced some or a lot of the days she's had lately. Anger, hate, grief.. and I was sure you really hadn't, but now I see different. I don't know what to say to her most days so I just don't respond to certain statements, questions, fears. Thanks for sharing your struggle too - I know it's only human to feel all those emotions, I just pray for better days.

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    1. I am pretty realistic but as you pointed out, am human. I haven't really been angry at cancer or getting cancer. It's just one of those things. But boy, can I get pissed off if I send my husband to the store for coconut popsicles and he comes back with orange. :)

      That really was the only period of anger I had. Most of my concentration goes elsewhere. But it was powerful and I don't deny it. Thank you for your prayers.

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    2. Love the popsicles comment - it's the small things (with chemo brain) that cause the most rage. I am seven year cancer free, but, do so remember the uncontrollable rage over popsicles!! Glad you have had the strength to post again - and like others - want your Doctor to get that drug!!!

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  22. Reading this post about the anger that you feel/felt helps me understand what my husband felt during his battle. It often came out as anger towards me because he just didn't know what to do, I think. Thank you for the insight you provide. Praying for you.

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    1. I'm sorry he is expressing his pain as anger at you but what a generous soul you are for recognizing it! *hugs*

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  23. My husband Bobby sent you a token gift last month. Even if it is after your last breath is gone, we will continue loving and praying for you and your family. And when your boy goes to college we will make regular contributions to his education, as i hope others do as well. BTW, I am high functioning autistic, and if you don't know it, that makes me pretty anal about keeping my word.

    The contributions you have made to this world, have been, are, and will continue to be plentiful.

    In my own life you lifted me out of a pit of deep despair when you were still on the BCO board. I cried out and you [and only you] responded with a practical compassion that i desperately needed. [I'm the lady with the ill son who lives in a nudist resort in colorado who was accused of faking breast cancer in the community I thought was my support.]

    I am angry for you, so angry. and sad, so sad. But i still have a hope, almost an excitement like one would feel were they to witness a beautiful purple flower growing toward the sky from a mound of toxic garbage. wondrous things I believe, are in store for your family whether you are physically present with them or not.
    I love you, am praying for you, and, oh yeah, you looked uber stylin' in your red shoes.

    Vicky

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    1. Vicky, if it was a donation and I have not responded with thanks, please know that I am behind and I will get to it. I feel very guilty for not getting thanks out as I should. I am just now getting to these things - the two illnesses in a row have made doing these things hard. (I post my facebook posts in advance so I'm not quite there as much as it appears.)

      So if that was it, thank Bobby, thank you.

      And, thank you very, very much for your continued support - you do not have to do it.

      I'm sorry you didn't get the kind of support everybody deserves on boards like that. But, people are caught up in their own thing there and can be cruel without knowing it, I think. One of the reasons I left was because of that too.

      Love your visual and thank you.

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  24. Ann, thank you for writing this post. I find myself getting angry from time to time. I see my mom abusing her body with drugs and cigarettes and she's still around. I hear people complaining about trivial things and I just want to shake them and say, "Do you know how lucky you are to be alive and healthy?" I even get mad when I hear people with early stage disease and are done with treatment complaining how hard it is.

    I feel shame for these feelings, but I realize it's part of the grieving process. If I don't acknowledge anger, it will leak out like air in an old balloon. You have every right to feel rage, and I wonder if it was somehow cleansing for you.

    As a fellow blogger and stage IV cancer survivor, I know how hard it is to put your heart on the page as you do hear. We don't need people's advice. We need love and understanding. We have difficult choices to make and what we choose is very personal. Just want to put it out there for some of your readers.

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  25. Just checking in today to see if all is ok. Thinking of you today.........hoping you are getting strong again, and ready for the TDM1
    Hugs

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    1. I'm feeling pretty good and am up and about. Except for the pain in the liver and some nausea, I am doing quite well. Definitely it was the Gemzar causing those issues. Somebody told me about a scrapbooking system called "Project Life" and I am using it to get old photos into albums quickly. No more super fancy layouts that take five hours a page for me, I need to get them in albums and documented. (My photos are everywhere!)

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    2. Lol, I have so many pictures scattered everywhere! I will have to look into that. I have found over the years, that we may have twenty photos of one event, that we can pitch probably 2/3's of them and use one or two to represent an event..
      I am so glad you are feeling stronger, but the liver pain stinks. Can you take any more or different meds, or is it tolerable? Whatever you do do not let it get ahead of you.
      Have fun with your photos! And have a good day...Lisa

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  26. Ann:
    I came across your blog by way of AnneMarie's Chemobrain blog. All I can say after this post is WOW. This is powerful. And maddening as hell. I know what BC is like because I've been through it twice, but nothing like this. I can empathize but don't have much to offer except words of encouragement and support. Thank you for being brave enough to share your story with all of us - I plan to follow your blog. Maybe as spring approaches you will start to feel a little better so you can spend more time enjoying your family. Meanwhile, I'm sending positive thoughts your way. Take care....
    Ellen

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  27. Ann:
    I am so pleased that you are feeling better. Do you know when you can start the new treatment you were talking about?

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    1. I don't know yet. They have to get it in, but it should be soon. I have another CT tomorrow which will show how much it's grown.

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  28. Ann,
    Thank-you for writing your blog. It is extremely witty, humorous and insightful. I like that you've been writing the whole story, parts of which are incredibly sad but with a lot of humor as well. Your whole blog is riveting.

    I loved your take on what not to say to people with cancer. I had many similar irreverent thoughts while going through my treatment (15) years ago about the stuff people would say. It was fun reading your snarky responses and know that it's not just me who feels that way.

    I am also glad you mentioned standup2cancer. When my employer solicits for ideas this year for their "big hit donation" I will have a good suggestion and will do my best to argue for research and to dump those hideous pink ribbons. It's also somewhere I can donate too.

    I hope you get TDMI soon. I am sorry you have to go through this.
    Karen

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    1. Thank you Karen. I hope I'm on TDM1 soon too!

      Yeah, I think that was my snarkiest post ever but it's so universal, the things folks say to us. People don't really realize it and how often we hear it. If you say something often enough, or hear it often enough, it becomes true in your mind (like the "sugar feeds cancer" myth). I wanted a shocking way to get those things across so people would THINK!

      I'm glad you will mention StandUp2Cancer. It's a good charity. Anything but Komen!

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  29. Oh Ann,

    This was so painful to read. My heart goes out to you. Damn this cancer beast. I am so sad you have been so ill. I pray the TDMI is available soon.

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  30. Ann,

    In short ... I love you. My family thinks about you and prays for you and your beautiful family often. You've truly been an inspiration to me in my recent diagnosis of Stage 3B Breast Cancer. Having 3 amazing young boys, I've had moments in the last 2 months of sheer panic and deep sadness.

    Writing thankfully has been a true source of therapy for me...recently starting a blog of my own. As supportive as my family and friends have been, I still often feel like I'm on an island. Reading your posts in those moments, during your early treatment as I was/am experiencing those same feelings, symptoms etc., you've brought comfort, sanity and friendship (w/out even knowing one another) to my life, meeting me where I needed to be, pulling me out of isolation.

    Your gift of expressing raw honesty with humor & love — in the face of madness — has touched me and will continue to touch countless others.

    Thank you ...

    Nicole
    xoxo

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    1. Nicole, thank you for your kind words. And, hugs for your family right back. I know having those boys makes your desire to get through it stronger, and they will also keep you too busy to feel sorry for yourself! :)

      I always encourage people who enjoy writing to put this experience down on paper (or electronically). I think it helps to get it out and share with others who are going through what you are, and if you can look at it through a particular lense (in my case, humor) you will see it differently. I also have seen some poetry blogs that are wonderful.

      And, if you don't like writing, then drawing, or cooking, or doing something therapeutic that takes you out of yourself is still is important.

      Also, since you are newly diagnosed, I think you should imagine your life as a survivor and what you what that to be like. Write it down. Rather than a bucket list, write a Survivor List. I think clarifying your future will help you when your treatment is over and you are left feeling like something is missing, as many do. IIIb is a scary place to be but women do recover from your stage every day. You have to believe you will be one of them and so write what that will look like for you.

      *hugs* to you and your family. Thank you.

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  31. Ann,
    I feel your pain. Sometimes I wonder when I am going to reach the point of saying enough already.

    Good news though. Yet another new treatment is coming.
    Two days ago I got a call from UNC-Chapel Hill. They are partnering with Novartis for a new HER-2/HER-3 treatment. A Phase 1 trial. The head of the department thinks I am an excellent candidate. I am scared, excited and hopeful. She told me the name of the trial, but Chemo brain has wiped it. I will be at my doctors office the 25th talking to my doctor, who will be talking with my other doctor at UNC-CH, who will be talking to the clinical trial supervisor and between the four of us, we decide if I am being put on Kadcyla or if I will be starting in this Phase 1 trial. Personally, I don't mind which one we do. I know what Stage four means, and my thought is, since I get every bizarre side effect from every drug (If only 2% of the patients get that side effect... I am certain to have it), I will be a great person for the phase 1 trial. I know the risks, but if the risk means a new drug that stops the growth and progression... then bring it on! I am luckier than most, having a research hospital only a couple of hours away.

    I hope your Oncologist can get the Kadcyla approved for you, and delivered. In talking to the doctors at Chapel hill, they told me that there are at least three new treatments waiting for trial approval... and so we wait and we hope and we keep going. Even on those days when we just want to say stop.
    Love and Respect,
    Dawyn

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    1. Dawyn,

      Wow, thank you for considering a Phase 1 trial. Those are the heroes of the cancer world, the people who did the phase 1 trials. (For those who don't know, Phase 1 is the safety testing of a new drug - looking for bad side effects). Check out the women who did the Phase 1 of Herceptin in the movie "living proof." Without Phase 1, we couldn't go on to other phases and see how drugs help and whether they work - but I think right now, I'd pick TDM1/Kadcyla rather than a trial. You are braver then me.

      Frankly, I just want a little break from this madness and if TDM1 can give me that, I would choose it. I can't find out from real people what the side effects might be and if they are as bad as chemo.

      It's good to hear that they are testing even more drugs for HER2 patients. There is hope for the future - if not for me and you, certainly for our daughters.

      I have not looked into a trial because of TDM1 but that will probably be my next step if TDM1 doesn't work. I think knowing that 7 chemos have failed me means that others will too and something new will be what I need. But we'll see, I don't want to jump ahead of myself. My doctor has assured me we aren't done yet so I have to put my trust there.

      I just had a CT yesterday and will get the results next time I see my doctor on the 3rd (which is my choice to wait) so hopefully, they will have TDM1 by then. I had trouble with the CT too; I'm wondering if my liver is just not filtering drugs out of my system quickly anymore. Does that make sense? I don't know if it's possible. I've never felt bad after a CT with contrast - but I went straight to bed and slept for the rest of the day and was nauseated and exhausted.

      So maybe my liver isn't functioning well or maybe I'm just tired. I missed a school play, which made me sad.

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    2. Oh Ann!
      I'm sorry! I understand about missing stuff. My niece is 1 and while I love her dearly, I just can't be with her as often as my wife goes over. I miss a bunch of time with her, but when I do feel up to it, we have a good time.

      I am not thinking of myself as hero for the phase 1 trial. Mostly I am willing to try it while I am still healthy enough that if it all goes wonky, I will be well enough to recover from it. I'll keep you updated if I get chosen. I keep my own insane meandering blog about the craziness of Stage 4, so feel free to check there if I forget to let you know.

      Meanwhile, keep strong as you can, enjoy your sassy shoes (for me... it's hats... I have a thing for hats) and I will be hoping for you that the NEXT chemo is the one that holds it off.

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    3. Send me your blog, I will link to it if you like. There aren't a ton of us metster bloggers and I want to make sure I link to all the active ones.

      Delete
    4. http://www.bluecollarlesbian.blogspot.com

      I know what you mean... I read a blog and then one day... it goes silent. Then there is the post we all don't want to see. I dread that. I love yours for many reasons, but mostly because it makes me feel less alone.
      Love and Respect
      Dawyn

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    5. Oh... forgot to tell you... I am starting the Phase 1 trial on 5/6/13. Hoping and praying for it to not be too hard on me.

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  32. Ann, just wanted to let you know that I'm thinking of you often. You don't know it, but you were very instrumental in me pursuing my bilateral prophylactic MX last year... turned out it wasn't prophylactic after all - found a very tiny tumor. Thanks to your story, in part, I'm on Tamoxifen (frankly, your story scared my pants off). Thank you for everything you've given and for all that you continue to give.

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    1. I am glad you are doing well Nora, and I'm so pleased everything turned out for the best for you. Can you imagine having to go through it twice?

      I'm glad I scared you. Stay on Tamoxifen. A fun drug? No. But it is anything like what I deal with and it will end. Stay healthy!

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  33. Ann,

    One day - during the time when Emily was so sick, filled with pain, and in a wheelchair - I was at a convenience store buying something. In front of me in line were two beautiful, healthy young cheerleaders. As I stood there, staring at their strong, beautiful, HEALTHY legs, I was so filled with rage - rage that they took for granted their health, their legs, their ability to walk. I wanted to scream at them, "Don't you realize what a gift your health and your ability to stand without pain are?!?!?" The rage was so all encompassing I had to walk out of the store, get into my car, and just breathe.

    I cannot imagine the rage that you must have felt. I have no words of wisdom or advice, only a hug. You aren't alone.

    Audrey

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    1. Audrey, whatever I felt, it was not as bad as a mother's rage. It is not fair that you don't have a healthy, pain-free daughter. It never has been. I think a real mother suffers more than her kid does, and I know I would suffer a LOT more if my son was sick than I do because it's me. I don't know how mothers of young cancer patients do it. I'd rather do it ten times over than have it be my kid.

      But those young, beautiful girls - they don't know the gift of health. And, you wouldn't want them to know, because that means they have to suffer. Rage should be directed at the druggie begging outside of the store, trying to get her next high; the ones throwing their health away, knowingly. That is incomprehensible to me, not wanting to face this one life we are given, spending years under addiction. They are throwing something away that is beautiful. I only hope - when I see them, which is all too frequent - that they end up in rehab and with a 2nd chance. I wish I could make them appreciate what they have, but that is an impossible dream.

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    2. Just because the cheerleader girls were young and healthy does not mean they are not aware of the gift they have. They may not fully comprehend it the same way we who have lost it have. The friends of my daughters watch me, the same age as their mothers, and realize there are no guarantees in life. My youngest has a friend who recently lost a little sister to brain cancer, and I think that has raised their awareness more than me, because she was so close to their age.
      I understand those who suffer who chose to fight no more. But, I am angry at those who throw life away. I am angry at the addicts who deliberately poison their bodies. And today, I am angry at my older brother, who refused and refused when family and friends begged him to go to the doctor when he clearly was feeling bad for several months, who was found dead in his house last week. It is not just addicts and daredevils who throw life away.

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  34. This is the sad reality of life and we have to deal with it. I hope we will soon solution to diseases like this so that the world can be a healthy place.

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  35. Worried about you....I hope you are resting comfortably

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    1. I am better, thank you. If you ever wonder, you should like my facebook page here: https://www.facebook.com/ButdoctorIhatepink I try to post every day there, and if I don't, you know I'm sick. Or, you can follow me on twitter and my FB posts go to twitter automatically. This would be a really boring blog if I posted "I'm fine" every day so facebook is for that. :)

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  36. Ann,

    Just wanted to write and say how sorry I am that you've had such bad effects from the latest Gemzar. I've been on vacation but even when away from all the technology, I think about you and wonder how you're doing. I know I've said it before, but I love your blog. Keep on trucking, mate.

    Linda A.

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  37. :( my heart is heavy for you. I can relate to how you physically feel and it just plain ol' sucks! There's not a better word for it. Memories of struggling to climb in and out of a bathtub terrorize me... I'm sad you're going through this. I hope the new treatment heals you. You have my love & support.

    (((hugs)))

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  38. hi Ann I just wanted to say I think you are an amazing woman and you do not deserve what is happening to you. This post, like all your others, is eloquent and conveys the feelings we have all had just so well. You are living one of my greatest fears (metastatic BC) and I only hope that if it comes to that, I can have just an ounce of your humour and guts. I see that you get your CT results today (probably not today for you yet, I am ahead of you in time) and I am wishing you good results. You deserve a break.

    xoxo

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  39. I stumbled upon this blog in my work for a breast cancer support non-profit, and I have to say you have a beautiful way with words, and an incredible capacity for looking at and accepting the bigger picture. I'm so sorry for your pain and your struggles, but thank you for sharing this terrifying journey with me and the rest of the blog community. Even though I started following your blog for work, I have long since converted into a personal reader.

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  40. I know that you're a strong woman, you have to keep fighting, never give up! My godmother had a Stage III Cancer 2 years ago and she survived it, she had chemotherapy and then proceed into radiation therapy. I believe, there's still room for you to get well soon, you just have to pray and to believe. Boost your immune system by eating nutritious foods, my prayers are with you.

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