Tuesday, December 1, 2015

Six Year Treatment Anniversary

Tomorrow is my chemo day and my second infusion of Kadcyla/TDM-1. Tomorrow also marks six years since I've been going in.  It is my treatment anniversary.

December 2nd, 2009 was my first-ever chemotherapy infusion. I remember sitting in the treatment room for the first time, nervous about the chemo I was being given and wondering how my body would react, and feeling like it was all so strange.

I got used to going in over time, it even felt familiar, like a second home.  Yet of course, I looked forward to the end of therapy.  As I finished my original treatment, the nurses gave me a certificate and they all congratulated me.  I took a deep, happy breathe and walked out, thinking I would never have to go back and my butt would never touch a barcalounger again.  I was grateful to be done.  And just three months later, mets were suspected, confirmed in May - and I went right back to the infusion room and that ugly chair.

What "seemed" endless at the beginning turned out to actually be endless.

I have learned how to live with an incurable illness: with the fear, the pain, being sick, losing parts of my life bit by bit.  I've learned that all that really matters is the people in your life, and I have learned that most people are incredibly kind.

Still, there are many who cannot see past themselves. They are too needy to help you or hear you. Some ignore you and disappear.  Some brush off what you say.  Some tell you what to do or what not to do as if it is some sort of talisman that will protect them from your fate.  Many will not extend the type of kindness to you that you need or ask for; and they are unable to understand the hard place you are in, they can only see themselves.  They can't understand the difficulty in learning to face your own death - your obliteration -  or understand that you are living with real suffering beyond what they may know.   What feels like a lack of caring and dismissal hurts more than it would if you were healthy and not experiencing your impending death, because you know there is no time for change or understanding. It feels hopeless, and so rather than try to explain or continue on, we must let go for our own mental health.   One wants to imagine that somebody will wake up and understand, but the reality is that they will not - even after you have died.  Their own viewpoint is the only one they can see.  Many people go through life that way, with blinders on, not only unable to see you, but unable to see anybody.

But this makes the ones who do try to understand, who are generous and humble and kind, who try to learn, so much more special.  And if you reading this, you fall into that category, and I'm grateful for you.

When I originally started my blog and my facebook page, I did it because I wanted to let people know that it was possible to get through cancer treatment and to the other side. I had no doubt that is where I would be.   I am a normal person, nobody special, had no amazing life, was a school secretary and a mom.  If I can do cancer treatment, anybody can.  So I described the tests, the mastectomy, chemo, biopsies - I wrote about what it was like from my perspective, to demystify cancer treatment for anybody who came along and wanted to know what it was like.

When I -shockingly- found out that death would be my outcome, I decided to keep it up.  We need to demystify death in this country too - we are so far away from it. So now I write from the point of view of somebody who will not survive cancer.  And many people can accept that, and some - well, they cannot.

I am still here, six years later.  It is increasingly unlikely that I will be here in another six years.  Even six months seems iffy these days, although I am early into my latest chemo and I can be lucky and have it shrink my tumors.  I imagine I will find that out in a couple months.   But now my life is harder, and full of pain.   I don't want this blog to be a litany of complaints, but I also want it to be true.  They say that when it is in your liver it isn't very painful, but mine is now across my abdomen and in the lungs.  So there is certainly pain that I am having difficulty controlling.

There is no doubt that the end feels much closer than it used to, but that may be the pain talking.   I don't think dying of cancer is a very easy thing to do.

Remember, what we Stage 4 metsters want most is understanding, so if you know one of us, the kindest thing you can do is just listen.  

Happy Anniversary to me.

.

47 comments:

  1. You are one awesome lady. I love you.

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  2. Happy anniversary! So glad you are here. Today is my 6 year diagnosis anniversary. I want you to know that your blog was the best source of information, bar none, that I found when I was going through may own surgery, chemo and radiation, and it continues to bless me and so many others. You have never come across as complaining, just as being honest. The world needs more of that, and you can be proud of the difference you have made and will continue to make in the world. Thank you for writing!

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  3. So thankful you shared this.

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  4. So thankful you shared this.

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  5. Thanks for your blog, and I am very sorry for your recent progression. I was diagnosed with HER2 +++ (my oncologist says I am ++++++!) BC a year ago, and had a bilateral mastectomy, but declined chemo and H after much reading. Your blog, the breastcancer.org boards and the many pubmed articles I have read helped solidify my natural impulse to decline adjuvant treatment. I am thankful that you have had the guts to write about it honestly. I am about the same age as you, and your experiences and those of another blogger, the late great Lisa Bonchek Adams and much other reading helped me make the decision to do only surgery and live as long and as well as I can. I know that will be scary or weird to most people, but I know myself, and I would not be able to deal with what you and Lisa and so many others have endured. I am grateful that you provided such a straightforward record of your experiences. My prognosis is crap (with or without chemo), but I am OK; I've had a happy doctor-free 7 months, and hope for another year or two of "medical freedom". I know I am an outlier, but I also know what I want from life. Without blogs like yours, it is terribly difficult to make thoughtful decisions about life/treatment; the pressure to undergo standard treatment is extreme, but only the actual patients can provide a clear view of its realities. I sincerely thank you, and wish you remission and many years of blogging.

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    1. Thank you, Anonymous, for saying what is also my experience. I am here, listening, as long as you're speaking Ann. Please know how much you're appreciated, and how much love you'll be taking with you.

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    2. While you are making a decision I would never make, I respect and appreciate that you made it intelligently and thoughtfully, and did what was right for you.. It is sometimes hard to accept that what is right for one isn't right for everybody. As long as a decision is made based on knowledge and not emotion, nobody should quibble with it, and I hope that you find the people in your life are understanding and respectful. It took great courage to make the choice you did and I hope your loved ones understand that.

      I wish you the very best.

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  6. Really it is Happy Anniversary to us! We are sooo lucky that you are HERE and still posting amazing thoughts.

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  7. Ann - I rarely comment but read all of your posts. I have no profound thoughts, but just want to thank you for this blog. The truthfulness of what you write is what drew me in immediately.

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  8. Dear Ann, I don't know you but I love you and am praying for you. You are a wonderfully brave lady and I am thankful that you are willing to share your experience so that others may learn from it. NP

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  9. Love and strength, Ann. I look in from the outside (brought into the blogosphere by the above mentioned, sorely missed, Lisa Bonchek Adams). I've not had to meet these challenges myself, but I've learned so much about courage and choices from your blog.

    Hoping for pain-free life and joy in the small things!

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    1. It's funny, several people mention Lisa-I actually had written a sentence about her too, but took it out. she was a remarkable lady and I'm not quite in her category but it's nice we are all thinking about her.

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  10. Hi Ann,
    I remember you from one of the other sites you were on and sorry you left but have read your blog from time to time. We were both diagnosed around same time-me with ibc, idc & bone mets; now brain & liver mets 6 years later. I moved to Sacramento this past June so my son can go to Sac State. Love it here. Would love to visit you if you are up to it. You can email me at tterriquez@yahoo.com. I post under ibcmets on bc.org. Hope this new chemo works well for you. Love your blog.
    Terri

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  11. Nothing like honest prose to make my day. Sadly, not only are those self-absorbed people limited to friends/family of cancer survivors, but they are everywhere and growing in numbers. We live in a what's-best-for-me world, without a lot of thought into what other people need and deserve. All I can say is they will have to pay the piper at some point. In the meantime, you have so many who care about what you're going through, even though they may not stop in as often as they should to let you know.

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    1. I wish I believed there was a piper to pay, but I don't. I suspect most will live their lives ignorant of the hurt they cause. I have a relative who has not talked to me since my diagnosis-that person is incapable of insight. When I'm gone there will be no chance to reconnect but I suspect that will somehow be justified. If somebody can't be wrong-that happens in every aspect of their life.

      But the focus should really be on the ones who try to understand and give us peace.

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    2. Sadly, sounds like you're dealing with a narcissistic personality disorder, or even a narcissistic. It took our family many, many years to realize we were dealing with one in our own family circle. I didn't know a lot about this disorder but when I did the research it was like, bingo!

      You're right that we should focus on the people who are there and who listen and offer themselves on some level.

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  12. Hi Ann,
    I hate that you didn't get to "stay on the other side" of treatment. I'm so glad you started your blog and continued with it after your mets diagnosis too. Your voice is very much needed and has undoubtedly opened a lot of eyes. I completely agree that we need to talk about serious topics like living with metastatic disease. We need to talk about death too. We tend to avoid the hard topics in our society. I'm not entirely sure why this is. Thank you for continuing to share your truths, Ann. Always here to listen, as are many others. xx

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  13. thankful for sharing your insight, walking quietly by your side in the shadows of people you don't know, but pray the silent prayer only the holy spirit knows how to deliver to the proper place in the proper way. your courage gives me courage, sharing your walk makes my walk less lonely. thank you for this post. i have cancer too. just had breast surgery. been handling it holistically and will most likely do so until it gets to the point another surgery is needed.

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  14. I'm so grateful for your blog. It's really informative, but more importantly, it's really "real" - so honest and true and painful and funny. I learn from it each time I read it.

    Wishing you a peaceful holiday with your family.

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  15. Ann, your blog made it possible for me to truly be there for a friend who lived with pancreatic cancer for two years post diagnosis. Thank you.

    Wishing you peace and comfort and good drugs in the time to come.

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  16. So sorry to hear your latest news. Wishing you days of less pain! :)

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  17. You have done a great service for all of us. I have gotten more information from your blog about BC than anywhere else. You have brought me hope, insight and now peace. You are so appreciated perhaps more than you will ever know. I look forward to your continued insightfulness. You are a treasure.

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  18. Throughout the years of your blog, you have added so much information to real women who started out thinking cancer is a quick automatic death sentence. Then as the blog morphed, you have given hope to metsters who just want to keep living as long as they are alive.

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  19. These two words in your description of yourself particularly struck me: "nobody special". I don't know you in person but I do know you are very special! Please remember that.

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  20. I don't have breast cancer but I know far too many young women who do (one 43 year old just found mets in her lung). I have used your blog posts (especially those about eating) to guide me in how I act and how I speak with them. I am so sad that you don't know how much good you've done.

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  21. You are very special to me. One of the things I've always admired about you is how real you are. You've helped me have more confident about speaking the truth and not being afraid of what others may think. Thanks to you I started my blog which has helped me in so many ways. You have also helped others.

    I am sorry you haven't been getting the support you deserve from everyone. Some people have a hard time facing reality but eventually they will have to. I am glad you have those who surround you with their love and good thoughts. I think of you often.

    I wish you better days with no pains. xx

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  23. Hi Ann--

    I have read your blog from the beginning after seeing your story on YouTube as part of the My Last Days series. We have almost nothing in common--I am a 34 year old CPA in Denver, CO--however, I feel like I have really come to know you in the last few years as I have read your blog and I have to say, I have ALWAYS admired your courage, bravery, and frankness as you have continued to go through this experience. I expected nothing less than your very honest tackling of the topic of death and though obviously not the outcome ANYBODY wants, you continue to amaze with your frankness and honesty. I just felt compelled to write you a quick note and say that I really appreciate you as a person and I hope that some encouraging words can make you feel even just a tiny bit better.

    With great admiration,
    Mike

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  24. Hi Ann,

    When a friend of mine was first diagnosed with stage 4 breast cancer, I remember feeling eager to help but didn't have a clue as to how or even what to say to her. I remember typing a search, "What to say to a recently diagnosed Cancer patient" and your Blog popped up. Greatest blessing as a source of information I got! Because of your blog and your will to share your feelings and experiences, I was better able to prepare and be of support to my dear friend in tuff times, pre and post surgeries,when hard decisions needed to be made, and especially towards the end. I saw how "uncomfortable" and even annoyed this made some friends and family. Many disappeared as well. But you know what? Those of us that stayed were blessed and honored to be a part of her journey. Those who "disappeared" from your life... It's their loss. Because you have inspired SOOO many! And those who have stuck around in your personal and "cyber" life, are and will continue to be better people because of you. I hate that your cancer has spread yet again. Know that you are thought of often by a complete stranger in Arizona who has grown to admire you a great deal. And that as I continue to follow your posts, I pray that you find peace and moments of comfort in times of pain. That you and your husband find strength in each other, in your children and grandbaby.

    With gratitude and admiration,
    -Erika

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  25. As always, Ann, I love what you write. I'm mad for you that this is happening again. Your words reach many and are such a testimony to your spirit. I also don't believe in a judgement or comeuppance although how great would that be? I do believe though that there is something so lacking in those that refuse to understand that their lives are made so meagre and that alone is a trial. My warmest thoughts to you.

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  26. I hear you Ann. And thank you for your candor.

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  27. Happy Anniversary! Yes, avoiding a litany of complaints is nice, but there is the balance in not sugar-coating our reality too. We all get to decide how to tell our stories - I think your fine balance of humor, snark, truthfulness works great.

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  28. Happy Anniversary! Yes, avoiding a litany of complaints is nice, but there is the balance in not sugar-coating our reality too. We all get to decide how to tell our stories - I think your fine balance of humor, snark, truthfulness works great.

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  29. Listening with an open heart.
    Sending healing love your way.

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  31. just wanted to add that I'm rooting with sooo many others for the meadow to come back. Soon.

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  32. Thinking of you today, Ann, with prayers that the pain you're experiencing can be relieved. Many many thanks for your insight and wisdom - your posts are a great help. The situation with friends and family who wear blinders is very real and contributes to the painful feeling of 'other' that is inescapable - so I appreciate your bringing it up! May this week bring many unexpected blessings. And hugs!

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  33. Thinking of you as the new year approaches and wishing you a return of remission! With love from MA

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  34. Hello Ann - I've been reading since your blog started......and been through chemo too. You've helped so many of us - and became our friend/sister. Hang Tough Honey.

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  35. Ann, I remember you from the Stage IV boards on bco, where I post as Lulubee. Every few months I pop in here to see if you are still with us and see how you are holding up. I benefit so much from your clarity and honesty about navigating these rough waters. I'm always so relieved to see recent posts. It's been almost a decade with BC for me; this year will be my sixth at Stage IV. Glad I'm still here, glad you are, too. Thank you for all the precious energy you put into these words. You help others in ways you will never know. I wish you the happiest new year you can possibly have.

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  36. Hello Ann,

    I am so sorry this happened to you. Thanks for your blog. I have never had cancer, but my mother in law died of breast cancer and I appreciate your thoughts and your perspective. Wishing you a return of remission.

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  37. Thank you for your blog. I don't know your whole story, but in case you were at all interested in clinical trials but have financial barriers, Lazarex Cancer Foundation exists to help remove those barriers and connect you with clinical trials, specifically for advanced stage cancer patients. I just wanted to share since most people don't know about it. www.lazarex.org.

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  38. This post. 💜 💜 💜 The 6th & 7th paragraphs especially hit so close to home- I felt as if my own feelings crept out & jumped into your page. It helps to know I'm not the only one that deals w/ this & feels like this. Dealing with people's varying reactions & responses, sometimes so insensitive & ignorant, is so hard. Thank you so much for sharing. 😘 Happy (belated) anniversary.

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