Wednesday, October 14, 2015

Time

Over the past four years since being diagnosed with mets, six with cancer, I have had approximately ten PET scans, about 50 CT scans, 24 MUGA scans and a sprinkling of bone and other types of imaging tests.

Imagine the time that takes - the driving, the parking, the waiting rooms, changing, prep, lying in machine after machine. Hundreds of hours I've spent - no, thousands - not only waiting for tests, but waiting for doctors and waiting for treatment. I have likely had 500 doctor appointments over the past years - often going several times a week. My life is thoroughly medicalized and has been since my initial diagnosis.

Lying in these machines, waiting for them to probe through my skin and reveal the secrets lying beneath - to learn whether cancer is growing or retreating, whether I have time to live or it is time to prepare for death - I think. I think about what it means to have this disease take away your life piece by piece, health, job, functioning..but also what it means to be one of the lucky ones who enters remission and gets a reprieve from cancer and gets some of that back.

And then, have it taken away again.

Which is what just happened.  My remission is over and I have active cancer again.

I think about how small we are in the grand scheme of things, and what makes us cling to life so desperately - and we all do, we all want life so much.

What I have mostly thought about is my family. I think about my loved ones. I submit my body to needles and chemicals and radiation and scalpels, for them, to see as much of their lives as I'm privileged to see.

In history, we are nobody. Only a few of us will have names that live past our immediate families: Steve Jobs, Bill Gates, Barack Obama. The rest of us, we'll be forgotten in the dust of time. And that's okay. Millions of people have come before us, each as individual as you or I. Each has had their life, their suffering, their joy, and their deaths and each is now gone. Billions of people, known only for 3 generations if they are lucky.

All we can do is try to do a little good while we are here; nudge the world in a way that we think it should be nudged. That can be done by something as simple as raising a decent human being. You never know if that person will truly change the word, be a President or Inventor, or will give birth to one. Not all humans must be great. Ultimately, what gives most of us happiness, what gives us the ability to continue on in the face of adversity, what gives us purpose, is being with the ones we love. Why is that so important? I don't know why, I only know it's the biggest part of humanity. So this time, as I sat in a darkened room with radioactive sugars dripping into my system, preparing for the test that will tell my fortune, as always, I think of my family.

My fortune was not difficult to tell.  In cancer, the crystal ball is not opaque.  What happened to me is what happens to all women with metastatic breast cancer.   Cancer grows.

All we want as we are scanned and treated is to live long enough for the next milestone: to see a birthday, a graduation, wedding, or a grandchild. Our lives are like fireflies in an endless sky, blinking out quickly. But we have value while we are here. Without us, the person who may change the world would not come about.

We are worth money, and research dollars, and hope.

My cancer regrowth is in a difficult place - abdominal lymph nodes and portal hepatis. Lots of important veins and structures there.    I'll have a radiological interventionist consult to see if it can be biopsied.  If not, then I will go on Xeloda, and stay on Perjeta and Herceptin.  And cross my fingers that I am allowed another little miracle.  The miracle of time.  There are more milestones to reach.

26 comments:

  1. Ann, I am sorry to hear of your progression. The time right now has not been good to you, myself, and another blogger I follow, Mandi. Does your doctor not want to switch you to TDM-1 because Perjeta and Herceptin are keeping your cancer from growing in other places? Just curious. My experience with TDM-1 has been fantastic in terms of side-effects. Besides my recent increase in a lung nodule, all else remains quiet.

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    1. I think the plan will be to try to biopsy first and then go from there. It's in a bad place, near a lot of veins and arteries so might not be biopsy-able. If not, we'll just assume it's HER2+. I'll mention TDM-1 but I'm also pretty weak and he wants me on one that is easy to tolerate.

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    2. TDM-1 has been pretty easy for me, relatively speaking. The fatigue is still awful, but I'm nowhere near as sick as I was on broad-spectrum chemo. Thinking of you all the time.

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  2. Hi Ann. I just wanted to day I am thinking about you during this time. I actually think of you often since we met at #HealtheVoices and talked that last day in the hotel lobby. I have found great strength and hope from your blog as I very, very recently have a loved one who was diagnosed with an incurable kind of cancer and while it's not the one you have, I find a connection here. Thank you for that. You are in my thoughts.

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    1. Hi Sara,

      Thank you! Guess we both made our flights, huh? I am so sorry about your loved one, I hope that he or she does well and finds treatments to be tolerable. It is not an easy road for any of us - patient or family.

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  3. You've said what I've often thought, that ultimately we are all forgotten, save for a few: I would have mentioned Beethoven and Mozart, but that's me. (grin) What matters is what we do now. My husband and I were discussing the other day what makes us (humans) different from other animals (we have those kinds of discussions) and he said, "Other animals have no sense of yesterday or tomorrow. There is only now." They're luckier than us, in some respects. I was sorry to hear of your progression and will keep you in my thoughts.

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    1. Mozart, good one! Well, I could have listed a lot of them, but being a techie....lol. :) You and your husband have interesting discussions, but he's right. I love watching my dogs. Every time I walk in the door is the most exciting thing in the world for them - I wasn't there and now I am! :) They just experience the moment. That's what I try to do too, no point thinking too far ahead.

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  4. Noticed you've been away from TCF, Ann, only to come here to see the bad news. :-( So sorry to hear the latest. Praying for you. - TiVo'Brien

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    1. Hey, yeah, I have been having pain. But I'll be back on TCF shortly, nobody can keep me away. :)

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  5. I'm sorry to hear the bad news, Ann. :(

    Allan from TCF

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  6. Sending you lots of hugs and support and some shared tears as well. My love to your family as well -- this must be hard on everyone.

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    1. Yeah, I think it must be harder for them than me.

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  7. So sorry to hear this Ann. You are in all our thoughts.

    -bareyb

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  8. Anne;

    I was so sorry to read your post today as always you write with such grace. I thank you so much for giving voice and humor to my thoughts of living with metastatic breast Cancer. I fell off the remission wagon three times (~ every 12-18 months) during the first 6+ years and then it seems to have gone underground for a nice long 6 year stretch.

    I had my 39th ct scan on Monday -- I am waiting to hear. It truly is a strange life sometimes living scan to scan waiting and wondering when the sky will fall. Know you are in my prayers.

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  9. This is a very profound - you have gotten to the heart of the matter and you have done that in many posts over the years. I was hoping the inevitable recurrence would come much later. You were so wise around the NED you experienced and hope you had some moments of joy and times of peace. Will be checking FB and here to hear how you are doing as I think about you from time to time. Regards and appreciation for what you share here.

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  10. I am very sorry to read this Ann. So Unfair, and all that.

    I hope they can find a treatment protocol which works for you and doesn't cause too many side effects and tiredness. xo

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  12. Thinking of you in Minnesota. I am so, so sorry that you are no longer NED. I'm sorry, too, that you still have the separate pain that seems unconnected. It's a lot to bear.

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  13. I am so very sorry about this, Ann; yours is and has been a very difficult road to walk. Words fail me.
    Sending sympathy and compassion from afar to you and your family.

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  14. So sorry to hear this news! I read your blog faithfully and you have given me so much strength on my breast cancer journey. Positive thoughts to you and your family!

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  15. This post touched me deeply, Ann. I hate that this is happening. I want you to know that your story will always be encouraging to me. I always share it with everyone I know. I will never lose faith for you, regardless of how complicated things may be. I will continue to pray and think you'll get another little miracle. Love you.

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  16. Hi Ann, I hated reading this news. I am sorry your cancer has progressed. Again. Your words here are so eloquent. And yes, it all comes down to the miracle of time. I will keep thinking about you, Ann. xo

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  17. Ann, how terribly frustrating, upsetting and unimaginable. This is not news anyone, mostly you, wants to hear. You are in my thoughts.

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  18. "The rest of us, we'll be forgotten in the dust of time".
    I honestly don't see that happening for you, Ann. You have brought such knowledge and wisdom to all of us who are followers. You have changed lives. I do hate this news though.

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  19. I'm very sorry to read this, Ann. You continue to be a bright light for others. I do believe in life after death, so maybe we see things differently there, I know that your life and your story will live on.

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  20. What a powerful line "We are worth money, and research dollars, and hope." I'll cross my fingers with you that you are gifted the miracle of time!

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