The story I cannot edit

August 20th, 2013 § 45 comments

This is the last week of summer before school begins.

IMG_6370 This summer was a big one for us. Youngest Tristan went off to sleepaway camp for one week and loved it so much that in the end, he stayed for a month. Paige and Colin returned to camp as seasoned veterans and had a wonderful time in their home away from home. All learned new skills and made new friends. Paige and Colin’s constant banter of camp stories at the dinner table are now supplemented by Tristan’s own stories.

I’m so pleased they could be in a place where they could just be kids, not worried about me, free to be carefree and happy. It is my gift to let them go, to not keep them here for my own needs. While I want to spend as much time with them as I can, I know that this is what they all needed to do this year.

IMG_6837I sit back and smile now, loving that they all have a common reference point of their weeks at camp. Despite the eight year age gap they all find laughs and joy in their summer adventures. They look older to me, of course. And while others are sad about the passage of time and their children growing older and being independent, I say again that I cheer it.

You see, my job now is to prepare them for life without me. My goal is to show them how to accept the help of others but not be reliant on it. I choose to show them every day that there is determination and nobility in facing what life throws you. You may not be able to change the final outcome, but you can change what you do to be ready for it. The strongest way of teaching this right now is by living my life deliberately, making choices and showing them the best I can be. This doesn’t mean denial. Nor does it mean I don’t lose my temper or raise my voice or fall apart sometimes. To be emotionally numb or invariable in my response to what is happening is not healthy. I try to show them that expressing what they feel is a better option. Emotions of anger and sadness and grief and fear are fine to have. It’s beneficial to talk about them, but dwelling on them won’t make things better. Acknowledging their reality, their truth, their basis is what’s needed.

As I always say when I get bad medical test results: a short pity party is good. Then you have to pick yourself up and move on.

 

IMG_6403It has been almost eleven months since my diagnosis of stage IV breast cancer, and there isn’t a day that goes by that is free from concern. I notice myself being more and more affected by the daily chemotherapy, feeling more fragile, more vulnerable. I have already had one bad respiratory illness this summer, and I worry about the school year and all of the potential colds and infections that will be transmitted. I don’t want to think about the ways cancer affects my daily life, but I must. The decisions I make about activities, treatments, and chemo all directly affect my life… both in length and quality.

I push myself to do the most I can. I try to do all of the little things that add up to a full day: school supply shopping, back to school haircuts, camp laundry, new shoes, sports registrations, and walking the dog. I also request meetings with school administrators, coaches, and anyone new in my children’s lives for this fall that need to know how my kids’ home life differs from the one they had a year ago.

I’m a planner. I take comfort in routine, the familiar, the predictable. Unfortunately, those are now removed from my life forever. Yes, I know life always tosses everyone curveballs. That’s what life is. But I experience it in a whole new way. I have no way of saying life will ever return to “normal” or even a “new normal.” There will not be a “better”… I am not “sick” in that I cannot recover.

I still feel the drive to help, to counsel, to educate. But am finding it more difficult. I hate saying no but know I will need to start saying this more. In-person interaction is very difficult for me. While no one would know it to look at me, social interaction is extremely draining these days. I try to minimize contact knowing that when I am in public I am under scrutiny. People want to know how I am. They want to be reassured. They look at me for clues as to how things are. There is no reassurance I can offer. This is a disease of progression to the end, a story that will not have a happy ending.

I want the story that I am living to be a good one, to the highest degree it can be. I want the story for my family and friends to be one full of love, memories, and devotion. These people are the center of my world.

I want the story to be different from what it has been, different from what it will be.

As a writer I am used to editing. Revising. Changing what I don’t like.

But I can’t edit this story.

I can’t start it all again.

And so I write through it.

The only way out is through.

But this one… well, this one is quite simply going to have a sad ending, as many stories do.1

  1. I have been at the new, increased maximum dose of my current chemo for the last two weeks. I am still monitoring test results and getting more information about its efficacy. I may need to change my chemo again. It’s a challenging and confusing time right now and I don’t have all of the information I need to plan what to do next. The coming week will be full of tests and meetings and research. []

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§ 45 Responses to The story I cannot edit"

  • Renn says:

    Lisa, your line, “But I can’t edit this story. I can’t start it all again. And so I write through it. The only way out is through” is so true. It sums up your blog so beautifully.

    I hope clarity comes to you after all your tests this week.

    PS Though I only ‘know’ you from your blog, when I saw the photo of your DD, I could so clearly see you in her face! :-)

  • Paul says:

    Dear Lisa, reading a few posts on your blog brings back memories of my wife who passed away from breast cancer last October. Our two girls were 12 and 14 at the time. Yes, it was a sad ending, and ten months later every day is still tinged with sadness. But as each day goes by there is more light, laughter and fond memories. It’s been the hardest year of our lives but we have grown closer and the girls have helped me as much as I think I have helped them.
    One thing my wife did while she was healthy was to buy presents and cards for the girls. for me to give to them on future anniversaries. She even bought new copies of their favorite children’s books for them to give to their own children. I haven’t read enough of your blog to know if you have done that, it wouldn’t surprise me if you had.
    One thing I did was to take lots of photos and video of her – with young children I knew that their memories would fade over time and I wanted to be able to remind them what she sounded like, how she moved, what she wore. She kept her own diaries, and I blogged the daily journey over the last three years. Those blog entries fill in the inevitable memories that fade. Your wonderful writing will be even more personal.

    Be strong, and when you can’t be strong try to be with someone who is.

    No need to publish this post.

    • Kim C says:

      Thank you for these ideas Paul. I like what you have written very much. All the very best to you and your daughters.
      Kim

  • Barbara Blankfeld says:

    Dearest Lisa: I know I’ve shared this with you before, but it bears repeating: you are a remarkable, inspiring woman. Your children are so very, very blessed to have you as their Mom – they are sure to be kinder, stronger and inspiring people in their own right. Much Love, Barbara. @BABlankfeld

  • If I can see through my tears to type, first and foremost I want to say what an amazing mother I think you are. You are doing this with grace. To give them the gift of this summer. So unselfish. You see your job so clearly and how it has changed. I wish you could edit your story with every ounce of my being. I love you and consider it an honor to call you my friend and blogging mentor.

  • Ann Gregory says:

    Lisa, as in all the things you you, your grace, clarity, and honesty shine through in this most recent post. I’m holding your hand and keeping you in my heart. There’s not a moment during the day when you’re far from my thoughts. xoxo

  • Beth Gainer says:

    Lisa,

    Stunningly poignant. One thing that’s for sure: you are a terrific mother. Sending you love,

    Beth

  • Diana says:

    Lisa, I recognise a lot in your story. As stage IV moms, we need to prepare our kids for spending time with others, for independence and for fun outside home. I often get remarks that my son (3 1/2) is so independent in getting himself dressed, in making plans, in his play. I know why he is. I am preparing him, just like you are with your kids. You’re doing a marvellous job. Please keep on writing.

  • Maura says:

    Absolutely in awe of what an amazing mother you are, followed by what an incredibly strong woman you are. Thank you for sharing your story.

  • You are an amazing woman, mother, wife, daughter, friend–and so much more. Sending love through the ether.

  • Beautifully and truthfully expressed.

  • I am sending so much love. It’s from afar, but I know comes right in there with others who feel the same way. And with every post about how happy your kids were at camp, I thought “What an amazing mom.” This summer was a gift you could give them. It’s on the giant pile you already have given and the giant pile you’ll continue to give–in so many ways you can’t even imagine.

  • Kit says:

    Beautifully written and I am so sorry that you have to write this. You are a blessing to the rest of the world and most certainly to your family. Your realness will live on forever in the hearts and minds of all you touch.

  • I hate cancer. But people like you give us all strength and comfort.

  • Beautiful! And so sorry that you have to write this. Sending you all the best thoughts.

    Julie

  • Lindsey says:

    Dear Lisa,
    I hate that you are writing this story. I just hate it.
    But I love you. xox

  • denise says:

    My friend. I love you. Like Lindsey wrote, I hate the story. HATE it. But you, well, my life is fuller, richer, more-aware and better because of your place in it. xoxoxo

  • kate says:

    Thank you for reminding all of us to live in the moment and be grateful for each day. I wonder if you realize how many learn from you. I am sad you are the teacher and have to write this story.

  • MJ says:

    There are no words but you keep finding them and my heart keeps breaking which doesn’t help at all. I’m sorry.

  • Lisa, thank you for writing this beautiful post. Wishing you all the very best.

  • Kim C says:

    I understand fully why you choose to socialize less. You’re wisely setting your priorities when it comes to where you put your energy and chosen to let some things go. For me, although I only know you through your blog, you’re a highly emotionally intelligent woman and I respect and appreciate what you share with us. Your focus on your priorities is teaching me so much.
    Thank you, Lisa.
    Kim

  • Alisa says:

    Lisa- I can’t say anything that hasn’t already been said above. Just commenting to let you know that your voice is being heard. I follow you here and on twitter and thought it important to let you know that I read every word you write.

  • Catherine says:

    Dear Lisa
    You have a wonderful gift of expressing all that is in our hearts as Stage IV breast cancer mothers. My son Matt is just 26 and about to embark on the most exciting and brilliant adventure as the youngest of only 12 professional yachting skippers leading amateur teams in identical 70ft racing yachts right around the planet for 11 months. I am bursting with pride, and praying to be well (diagnosed MBC in May 12) as even at 26 he needs me, and his step-father so much. Next week is the final week before the race leaves London and I so want to be there, but this week I am really ill, could cry with weakness, take refuge in sleeping…….and you have given me the courage to go on, pick myself up again and just go on with the days. Thank you Lisa, my prayers are with you every day, Catherine

  • Kirk M Maxey says:

    A few years ago I discovered a soft spongy mass under an old melanoma biopsy scar, and for a little while, I tried to expect the worst. But then, I was told it was lymphangiomyoma. So life went on – but I’ll always remember how knowing that my kids were launched, supported, and sailing independently meant more to me than any words of sympathy. With my children going on ahead of me, I can easily think of stopping somewhere along this trail of life and fading away for good. I know you’ll be fine.

  • Brenna says:

    Lisa, because I have known you, I am a better person for it. The world is better for your existence. My heart is bursting with love for you right now. You are the kind of mother and woman I hope to one day be. xo

  • Lindy Williamson says:

    Hi Lisa
    I, like you have secondary breast cancer in my bones. I like what you have written but you sound so sad and kind of desperate. This worries me. I am coming up to my final 3 chemos and can’t wait to feel better! Halfway through my treatment I felt hopeless, tearful and desperate, but now I feel hopeful that with treatment I have some years left. (I upped my antidepressants and saw a councillor weekly).
    I am lucky that my children are older (aged 20, 18, 16 & 14) so by the end of my story they will be almost self sufficient. I also have an amazing husband, family & friends.
    I wish you as much happiness as can be felt in the time to come.
    With love
    Lindy x
    Ps I thought Paul’s comment about his ex wife was positive and made me happy, I read it to my husband. Thank you Paul x

  • I hear the sad, but I don’t hear the desperate. I hear strong. Lisa, your grace and ability to control what you can serve you and your family so well. I know it’s ridiculously hard. I know being out and around people isn’t easy. I’m so glad you have this outlet — the online world — and a place to share your words. And glad we have a comfortable place to interact with you whenever you have the time, strength and ability. xoN

  • Amy Hallman Rice says:

    Lisa, I think of you every day and am inspired by you continually….you are an amazing woman and fantastic mother. Thank you for sharing with all of us.

  • lisa says:

    Oh, Lisa-Lisa-Lisa (and the Cult Jam; as a fellow Lisa, I can never resist that joke so please forgive). I offer nothing new except to honor the grace you exude and share through example. Grace doesn’t mean you don’t get peeved or weary or overwhelmed every day of the week. It just means that you do your very best, with as much perspective as possible, and expect the same of the rest of us. xox

  • Jill says:

    “You may not be able to change the final outcome, but you can change what you do to be ready for it.” Beautifully said.

  • Suzanne says:

    Dear Lisa,

    My head was turning this morning trying to find the best way to explain to the director of the school of my teen (16) that again, this year, she will miss a lot of time, and more… as I’m now in pre-palliative, and don’t have for very long – plus not sure how long.

    Well, you just showed me the way. One step at time, as usual. Head’s up. Following our heart is always the best of the best way.

    I too, find it so difficult dealing with other people lately, draining is the good word indeed. I am cancelling newsletter, and all what I don’t need by email, prosthesis are ready to go in the Canadian Cancer Society bag. I feel a bit already in the photo album with an old scent.

    Paul, thank you for your post, it does help knowing that everything will be alright (even if it hurt). Love what you said about finding someone stronger as I’m trying to spend time with my daughter and husband and wondering why I was feeling better with my hubby and feeling sad about it… it was because he is stronger and lately I feel very week, voilà.

    Lisa, I cannot find words to express my gratitude for your way of talking about subjects so many people don’t even want to think about it. It did help me doing it in french in my blog and in the support group I have initiate, and I hope it will help other in the same “wagon”.

    Friendly,
    Suzanne

  • Carla says:

    Lisa,

    I am reminded of a beautifully illustrated children’s book that has been in my collection for years, “Peach & Blue” by Sarah S Kilbourne. It is the story of friendship between a blue-bellied toad and a peach… and their adventures. As the story unfolds you realize Peach is, well, I’ll let the last page of the book speak for itself…

    She relaxed in the crook of Blue’s arm.
    “I wish I could stay here awhile.”
    “You can stay here forever, if you like,” said Blue. “I’d like you to.”
    “I don’t think I’ll last forever,” said Peach.
    “That’s okay,” said Blue. “Not many folks do. But until then, you have me, and I have you.”

    You are living out this story, Lisa. You are expressing what you wish could be. AND expressing what is. AND in the meantime, you have your family and friends and they have you.

    Thank you again for sharing your precious energy with all of us through your inspired tweets and blogposts.

    Warmly,
    Carla

  • JoAnn says:

    thank you

  • Abby says:

    You are amazing. You are incredible. Your family is so lucky to have you. Thank you for sharing!

  • Jessie says:

    All my best to you and your family.

  • Thank you for sharing this poignant, realistic post. I wish “the best” for you and your family whatever that may be in this unfair situation.

  • luna says:

    to say anything now seems so trite.
    yet I believe you are giving your children the best gift you can — your most honest and authentic self. continuing to think of you and your family.

  • While I don’t know what you are going through personally, I had a neighbor go through a very similar battle. What I want say to you is bravo for fighting. For running all the way through the tape. For giving it everything you have. My heart aches for you and your family; I will continue to pray that you get more happy days than sad. That you have many memories yet to make. More time to leave your irreplaceable mark on your family’s hearts. Thank you for sharing this part of you as so many are reading it and holding your hand from afar. xo

  • [...] “The story I cannot edit“: Lisa Adams prepares her kids for life without their mum [...]

  • wanda says:

    I just found your writing. I was searching on “tenderness in floating rib breast cancer.” I bet you know why on the first guess. I bet you did the searches too during your remission period. Of course you did.
    I have your sentiment exactly. So here is my vent.
    I don’t want hugs.
    I don’t want to be told to wait for 2 effing weeks anymore.
    I know it’s coming-go ahead hit me with it. At least then, I can plan. Suspended in time-I am. I want to scream and cry and scream and cry. Stop this torcher. Make it stop.
    I read you and realize it ain’t gonna stop. It just gets heavier.

    I’m not going to get off scott free on this one either.

    Here is what my struggle has been: What is it I wanted to accomplish anyway? My son is grown. I have two grandchildren. When I get really shaky I can’t do a damn thing but try to find the answer on the internet somewhere. There isn’t an answer but I do learn a lot. No one gets it unless they’ve got it.

    But really, what did I want to accomplish and did I do it. Oddly, I don’t know the answer to that today. Somehow, asking myself that is helpful. I’m really trying to find a center and purpose for the next few years. That way I will deal with the side effects of all the crap.

    I send you no hugs. No sweet hopeful thoughts either. That stuff annoys the hell out of me.
    You have beautiful children. You don’t have a choice to say, “I’ll just forgo all this primitive chemosh_t and die sooner rather than later.” You need to stick around as long as possible.

  • Rebecca says:

    Just wanted you to know that even though this isn’t your latest post, I came back today to re-read it. We don’t have cancer in our house (that we know of) but there has been another sickness that was supposed to take a week to cure, and has now taken a month and it isn’t gone yet. I had strength for a week, and two, but it’s getting harder as time goes on.

    It must have been hard having Tristen extend his camp time. I hope that you and your husband had some good times together though when it was just the two of you.

    • Lisa Adams says:

      Rebecca, I am sorry to hear about the events in your house. I truly hope they will resolve soon, it sounds like a very challenging time.

      It wasn’t hard having Tristan extend his camp time at all, actually. This was about his needs not mine! I was so glad that he was having so much fun (evident in the daily photos the camp posted and our phone chats) that I was relieved he felt comfortable and confident to be away for that long. It is my job to raise independent, self-confident kids and this was a big step! I am so proud of him and he is already stating definitively he wants to attend for six weeks with his siblings next summer. He beams. And therefore, so do I.

      Thanks so much for coming back to re-read the post.

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