Update 3/28/2013: Resilience and uncertainty

March 28th, 2013 § 39 comments

ImageLimboland is part of stage 4 cancer. On a daily basis I don’t know what’s happening inside my body. I often think about the cancer cells and wonder what they’re doing. Are they dying? Multiplying? It would be so nice to have a reliable blood test to easily and accurately measure how many of them there are at any given time. But these tests do not yet exist for us.

My CA 15-3 test again showed a slight elevation from two weeks ago. The numbers have been bouncing around over the last few months (expected) with a slight upward trend (undesirable). It’s hard to know what this means. A few points here and there are not cause for alarm. This volatibility is inherent in this test (which is why some oncologists don’t do this test at all, and why it can’t be used as a screening device. Also, in some people the test doesn’t reflect changes in the amount of cancer present at all). So… it’s a bit to me like trying to juggle Jello.

Of course I want to walk in and have my number be lower than the previous time. But that’s not always possible. With the exception of my hands I’ve felt good for the last two weeks. I’ve been in a frenzy of activity this week with Tristan’s 7th birthday this weekend (more about that in the next few days) and lots of activities with the kids. How I feel is important; while blood tests can show how my counts are, lack of pain in new areas is good too. I received my monthly injection of Xgeva today as well.

I’m back at Sloan Kettering next week and Dr. Dang and I will huddle and strategize. Today my local oncologist and I talked about some ideas about how to treat this test result and what it potentially really means. Right now it seems we are in watchful waiting (not that there is anything new about that). As of today no repeat PET scan is scheduled. We will see if that decision changes next week. My prediction is we wait two more weeks to see where the levels are then and re-evaluate at that time.

Chemo starts this Sunday. I’ve been doing the maximum recommended dose for 5 days, and a slight decreased dose for 2 days. I think this time I’ll be pushing to the maximum dose for all 7 days. It’s hard to know what price I’ll pay for doing so, especially during a very busy week next week (Sloan appointment and then another gig on the Doctor Radio Oncology Show on Wednesday at 1 PM which I hope to attend in person). My hands are my biggest issue, this is just what happens with Hand/Foot Syndrome. I continue to treat my hands with all sorts of products and care, but the truth of the matter is that this is what Xeloda does when it is taken and leaches out of the capillaries. The only true remedy is a decreased dose or discontinuing it altogether. That’s not in the cards right now (thankfully).

It is always hard to hear news that’s not what you want. I’m sure some people would be filled with anxiety and upset after this type of news. I like to give myself a ten minute pity party and then get on with life. If I give myself up to worry and dread for the next two weeks, what have I accomplished besides ruining two precious weeks of my life? Instead I went to the grocery store and stocked my house with food for the long weekend. I came home and played with my new dog (sweet Lucy is especially lovable in times like this).

I am a role model: my children are watching how I handle all of this. Raising polite and kind children is not enough. My children’s mastery of resilience is as important as any other life skill I can teach them. If I become debilitated by anxiety, don’t pick myself up and press forward, I am teaching them a lesson they do not need.

It’s okay to be emotional or upset at bad news. Complete denial serves no one. Acknowledging emotions of anger, sadness and fear but still displaying strength, stamina and persistence is what I try to do.

I hate the turn my life has taken. I hate that this is what is happening to my family and to me. For now, though, I continue to focus on all of the things I can do, and am doing. I pour my heart out on this screen. Some people think I must be depressed all of the time if I have these dark emotions evident in my posts. I can assure you that this is not what I am like all the time. Those feelings exist, and are important. I wouldn’t be human if I didn’t have them. It’s important to get them out not only for my own well-being but also because I know many readers with cancer tell me I’m speaking for them.

So, it’s not what I wanted, but I’m not sounding the alarms. We watch, we wait, we treat. I consciously do the best I can every day. Some days I do better than others. Some days I have a short temper and take my anger at cancer out on my husband or my kids. I’m not perfect. I apologize to them. I tell them I’m trying my best but sometimes it just breaks through. They see that I am human too. I make mistakes.

I draw strength from you all every day. Thank you for your support.


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§ 39 Responses to Update 3/28/2013: Resilience and uncertainty"

  • jbaird says:

    You express so well my feelings as a stage IV cancer chick. The watching and waiting can be so hard. I have issues with my hands and feet and my back at times. I take different drugs from you and don’t know if they are working really well or slacking off. Only time will tell. I wish you the best of everything and am glad to know you have your ups and downs, as I do. Take good care, Jan

  • You’re in my thoughts, my friend.

  • Jennifer says:

    Another touching post…your sharing exactly how you are feeling is incredibly moving…and makes me appreciate everything so much…thank you Lisa for sharing your very difficult journey so honestly and so beautifully…you have said before that you aren’t…but you really are…an amazing human being.
    Sending more hugs from south africa…for everything you are…and everything you are going through.

  • Once in cancer the phrase “watching and waiting” spins a different trajectory. You are defining life on your terms, with coping strategies that work. Years ago, when my mother was ill, someone suggested that I set my timer for 10 minutes. That’s how much time I had to fret, to worry about something I could not control.

    I learned.

    In no way do I mean to suggest this situation is similar to yours. It isn’t. But taking charge of the things you can? In the way you are?

    Way to go, my friend. Way to go:)

    with love,

  • Pam says:

    Glad to get the update.

    You are a wonder of articulate strength. Sending you love and hope that those numbers start trending downward.

    Happy Tristan’s birthday weekend!

  • You write to live as fully and authentically as you can, we read to bear witness. Write on, lady.

    • Sue says:

      Well said Nichole. Count me as one who bears witness. Thank you Lisa for always being so candid in your posts.

  • Brenna Darazs says:

    You are such a beautiful person inside and out, Lisa. Thank you for this blog.

  • Pat Milburn says:

    Your blogs are so important to me; you blaze a courageous and human trail. I am 75 years into this world and every day is precious. One day at a time, I hope to grasp each day as you have. Thank you.

  • Lisa, your courage and beauty and incredible spirit shine through in every word you write. I am in awe and inspired by your story, and the honesty with which you tell it.

    Thank you.

  • Tammy Riise says:

    Always praying for you Lisa!

  • You are a beacon of light to so many people, Lisa. I hope you know that. xo

  • lizzy says:

    I hope to be half the woman you are when I grow up. You’re amazing. Your husband and kids are lucky to have you. Sending you strength and you’re always in my thoughts!


  • The best thing about Twitter and your blog is that I don’t have to wonder what’s happening, because you’re always there. I hate reading about your troubles, but appreciate your spirit and determination. Happy Birthday to Tristan!

  • Christie Kerr says:

    I always check to see if you have stopped by here to touch base. I have a relatively recently diagnosed chronic illness in which each day is an unknown. It lets me know which part of my body it has chosen to attack each day – with occasional days lying quietly dormant. I am in my 70’s – life is good.

    When I saw this the other day I thought of you and it made me smile. I hope the link works and your week goes well.

  • Christie Kerr says:

    I always check to see if you have stopped by here at the blog. My daughter is an
    F & M grad about your age and I have a chronic illness that keeps me on my toes. It lets me know which part of my body it has chosen to attack each day – with occasional days lying quietly dormant.

    I am in my 70’s – life is good! Each day is valued.

    You are an inspiration. Have a fun birthday with your son.

  • Jen says:

    My mom also experienced painful blisters on her hands from the xeloda and found that l’occitane lotion was helpful! What is the saying…you never know how strong you are until you have to be that strong…? Thinking good thoughts for you and your family.

  • Tamara Rice says:

    Pulling for you, Lisa. Thanks for sharing your moments of strength and weakness with such honesty. You’re an amazing woman, and I’m thankful you are allowing us to walk through this with you from afar.

  • Rebecca says:

    You are such a strong person Lisa, even when you are weak. Those times when you are the short-tempered mom are good for your kids and husband too. It lets them know they can be human too. My husband used to try to be the “perfect husband and father” all the time and it drove me nuts. I felt like I was the only one who got tired and frustrated. He’s better at it now, but he still bottles it up too much. Thank you for sharing that with us. And Happy Birthday Tristan!

  • Kathryn says:

    You are such a wonderful example to your children and I might add, to all of us. Keep doing, enjoying your wonderful family and writing your words. Lots of love to you my dear friend.

  • Liza says:

    You are an inspiration, dear Lisa. xxLiza

  • Renn says:

    another heartfelt post with so many nuggets of wisdom! we are all learning from you, Lisa. Lots of {{{hugs}}}.

  • Kim C says:

    You’re a beautiful soul, Lisa. It helps me to hear the honesty in your expression of anger, sadness, fear, strength, stamina, and resilience. You draw me in with your openness and honesty.
    As you draw support from all the love around you, I too am sending my warm and heartfelt thoughts your way.

  • Just one of your faithful followers. Keeping up with your blog and your tweets is one of my “coping” mechanisms. We all cope in our own ways.
    You are an inspiration to many.

  • Kate says:

    Thanks for giving me an prompt to discuss resilience with my little girl. She is going to need it. All the best, metster to metster!

  • Carol Graham says:

    Lisa, we have never met, I am sure I have said that before, but reading your words, so elequently written, serves as a private support group for me. Its odd I know. But I also know that there is nothing I can do to make your lot in life better, I cannot cure you, or me for that matter.

    I am so sorry that it has taken your cancer to make you sure a publi person, to be known for your writingsd on cancer. Thanks for writing it though.

  • Fran says:

    Dear Lisa,

    My heart sings every time I see a new post from you. I know you are still moving along with all the strength and courage you have always displayed on this site. It is always good to hear from you, no matter what your mood or disposition. I, like others, appreciate your blunt honesty.

    I am in a limbo situation at the present time. I have two oncologists who have conflicting opinions – One of them says my breast cancer, first diagnosed February 14, 2006 as a Stage 1 has now metastacized to my bones andl liver. Yes, Lisa, we have been fighting this battle the same length of time, essentially. My clues that all was not right with the world began in September, 2012 after my primary care physician found a new lump under my right arm, signalling loudly there was an issue that needed immediate attention. Then there is the other oncologist who says my cancer is in remission. Now this may be seem to be good news, but believe me, I want to.know the truth. I am not a coward, but I don’t know how to.feel from one day to.the next. Some would ask, why are there such diverse opinions? What are the labs telling you and your doctors? Well, they vary from.time to time, and some days I feel like this is a good sign. But there are days when I cannot help but believe I am not fighting this battle properly. But how can I, not knowing what is going on with the inner workings of my body. It is quite confusing, and a real dilemma, and I am now scheduled for a third opinion. A tie breaker, so to speak.

    I don’t know if anyone else has been in this position, but I am more frightened that the first oncologist is right, and my body tells me it is so. It is so hard to not know from moment to moment whether to prepare for finality, or live my life otherwise.

    • Lisa Bonchek Adams says:

      Fran, I am sorry to hear about this situation but also very confused about how there can be such a rift between the two. The decision about remission/metastasis to bones and liver would be confirmed by PET scan, not made on basis of tumor markers alone (the markers can sometimes be an indication… the way your new lump was… that something is amiss, but not always). Have you had a PET scan? Have they biopsied the node? Those should be key in their decision-making.

      Glad you are pursuing another opinion as I, like you, find it hard to believe they can be disagreeing about this. Don’t give up until you feel you have gotten good input. If it has metastasized you need to know so you can decide how to proceed. It’s important, even though it is of course, scary. But not knowing can often be worse.

      Please let us know how you do, what they say. Keep pressing for answers. You must seek resolution so you can live the longest life possible. There are treatments available to extend your life if it has, indeed, metastasized. I hope for the best for you. Do follow-up with us if you can.

  • Greg says:

    Love when you get into the psychology of life. You know the brain well, you know people well, and you know yourself well. Keep expounding on the psychology of everything in life. Your skills are amazingly strong, and our family thanks you.

  • Mary says:

    I could re-word all that has been said before me but I won’t. I can only add simple and graceful………………Thank you, for posting these thoughtful and so true words, Lisa.

    Be Well~~

  • Suzie Mickey says:

    A friend recommended your blog to me, and I just linked in for the first time. Thank you for sharing your thoughts and feelings with us all. I too am Stage 4, dx in 2010. The ride has been very bumpy and now with my 3rd round of chemo winding to a close, I have let my inner demons take over and have been having some very low days. Your openness and honesty helps me to know again that I am not alone in this struggle, that brighter days will come as long as I don’t give in to this disease. With the shining of this spring sun, and listening to you, I am once again inspired to pick myself up, and be a better role model for my children and family. Thank you from the bottom of my heart.

  • Kelly Westover says:

    And I draw strength from you, Lisa. You are one of my heroes in this life. I believe you’re doing things exactly right, and you encourage me to better cope with my own illness. You are love and light, and I send you more of the same.

    • this moved me immensely. Thank you for saying so. I wish those back to you.

      • Kelly Westover says:

        I havent been able to hop on Twitter for over a month now, because of my new job, and I have been missing you! All the more reason I am grateful for your blog entries. Easier to check my email….there is no “quick check in” on Twitter for me, 5 minutes turns into an hour, lol.

  • DrAttai says:

    You continue to be in my thoughts and prayers.

  • Tracey says:

    Dear Lisa, When I cry for my mother (passed 4 months ago from breast cancer ), I come here for strength, my own faith is challenged….still I pray for you.
    God Bless.

  • Michael Connor says:

    You’re helping us all see past the illusion of certainty, Lisa … and (hopefully) find some deeper security.

  • […] a gift for stating things in powerful, but accessible, ways.  This post about the importance of resilience in the face of uncertainty really hit a nerve for me, because resilience is one of the qualities that I focus on with my […]

  • Thank you for speaking so frankly yet tenderly. Please know that when you are weakest, someone you have encouraged will be praying for you and sending strength and love your way.

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