October 10th, 2012 § 29 comments

Many friends and family are now following my Twitter feed. If you are, let me know. My username there is adamslisa. It’s nice to see more of you there. I do update a lot there in between big posts here. Daily life is there. I don’t always catch new followers.

My meeting with my local oncologist was about an hour. Some tests are back, (still waiting on a few and Sloan Kettering will run some other tests with their own pathologists) and they indicate that the cancer is “strongly estrogen receptor positive” (not a surprise). This means there are a variety of drug agents we can start with to try to keep this under control. The two-prong goal is to actually shrink the disease that’s there and also keep it from progressing for as long as possible. In most cases, older women are more likely to have slower growing disease and younger women to have more aggressive disease. We’ll have to see if the drug therapies (starting with anti hormonals) will work. Of course I’ve been on Tamoxifen or Armidex all along and also had my ovaries out, so I am already in an estrogen-deprived state. Not sure what that will mean for likelihood of working but the science of it is complex and I’m learning as I go. There are injectable agents and IV chemo to throw into the mix too. All will have side effects, of course.

We learned that the pain I have in my shoulder and chest is actually two fractured ribs from where bones are weakened by cancer. That will not heal until the disease is reduced. If the pain gets too much before we do that I will need 2-3 weeks of targeted radiation to kill those cancer cells and allow the bone to heal. I’ll start an infusion of Zometa to help strengthen my bones in the next week. That is an IV drug given monthly to help my bones.

The actual plan of what I will start with be decided Thursday, once I see what clinical trials are available. At this point most likely will be starting with the standard combo of Aromasin and Effexor. These are oral chemo, anti hormonals. They have side effects. Mostly bone pain, joint pain, mouth sores, dry mouth. I need to do reading on them soon. This is the first line of defense. I get to keep my hair during these. PET scans will be about every 2 months. Bloodwork in the form of tumor marker tests will be monitored monthly. I was one of the 2/3 of women who have elevated numbers at time of metastasis so at least there is something useful in looking at those. This is one reason some doctors don’t like these tests routinely: one third of the time there will be a metastasis without an elevation in these tests. They also can be elevated for a reason other than metastasis, so there are false positive results.

I have disease in the fractured areas, in T12 of my spine and in a spot on my upper femur near my hip. Today I will have a brain MRI to see if there is any in my brain. The PET does  not have the ability to show  that. Of course we hope with all of our hearts there is not.

How long has the cancer been there? Hard to say. I mean, the reason you do chemo is because you figure that once cells have left the breast you might be missing some. Any cells that are left can start growing at any time. That’s what the anti hormonals like Tamoxifen and Arimidex (an AI, or aromatase inhibitor) are designed to keep at bay to a greater extent than doing nothing. My doctor feels there are periods of exponential growth which eventually reach critical mass. This cancer has probably been there for about six months or less. In my spine and femur the cancer is confined to the soft part of the bone, the marrow.

I’m having trouble eating, pretty much confined to liquid and soft foods like yogurt. I’ve lost a lot of weight and know I need to get my strength up for the assault that is about to hit with treatment. I’m trying. Right now I am very weak, in body and spirit. But this will change. It must change. I’m adjusting and gaining knowledge and I had better get my head around this soon. But that is hard. I am angry and sad and scared and I go through every emotion multiple times a day. I cry at everything and nothing. I snuggle with my children as much as I can. I talk with Paige about what’s going on, she wants to know everything. We do not talk about prognosis and timing, only that it’s not curable and treatment won’t ever end. We talk about advances in treatment and how new things are coming along every day. We talk about the role Herceptin has played in giving life to those with the HER2Neu form of the disease. I do not have that form, but my mother did. The infusions she received of Herceptin (at that time not yet FDA approved but she got under ‘compassionate use’ exemption) saved her life we believe.

So, brain scan Wednesday afternoon, Sloan Kettering Thursday. Then we will have a plan and will start immediately. Until then, resting and trying to eat and control the pain in the fractured areas.

I won’t lie: every moment is a nightmare. There isn’t a second I am not thinking about cancer now. I hate that part, how it eats my life as it consumer my bones. I know this is normal for now but I hope someday soon I can think about other things. I don’t know if that’s a pipe dream.

My friend Andrea sent me the most magically colored flowers yesterday. The note said, simply, “Anything is possible.” I alternate between wanting, needing to believe that and thinking that might be giving myself false hope. But then I think of how much I believe in science, and drug advances, and I want to believe that’s true.

Thanks for all of the continued love and support. These posts take a lot of time and energy so they won’t always come immediately. I am using time to rest and do tasks around the house that need to be taken care of, doctors’ appointments, etc. Thank you notes have taken a back seat and for now an email of gratitude is all you might get from me. I wish I could do more, but please understand why this is the case. And as always, the disclaimer: I am presenting my interpretation of what I am being told by my doctors. It’s not medical advice. It is sometimes simplification of complicated medical scenarios. I’m doing my best to distill it down but I’m not a doctor.

Much love,


§ 29 Responses to 10/10/12"

  • Renn says:

    Lisa, you astound me with your clarity and depth of compassion and ability to distill complex medical processes into easily digestible language. Documenting the uber-honest details of your mental, emotional and physical life, your passion for your family, your hope for an “anything is possible” (it’s true, BTW!), well, it’s such a profound and generous gift to the world that it just slays me. *You* really are the gift.

    Here’s wishing you a heartier appetite so you can regain your strength for the hills ahead.


  • Much love and strength to you, Lisa. I know the inner strength will re-emerge once you’ve had a little bit more time to process it all. I just wish I could do something, anything, to help you eat and rest and gain the physical strength you need.

    I’ll see you on Twitter. xo

  • Hi Lisa,
    Your honesty is inspiring, thank you!
    Sending hugs & love your way….
    Lisa xxx

  • I, too, subscribe to the anything is possible way of thinking. Yes, you need to get your physical strength as strong as possible for what is coming. I saw on twitter you were asking about protein drinks. My father needed them, and we found that Ensure tasted best. Yes, I tasted it. Chocolate, and cold. Thinking of you every day,

  • I do follow you on Twitter, but I don’t get on there every day. I am more likely to be reading your blog or seeing an update on Facebook. It breaks my heart to see so many people with cancer lately. I don’t know if it’s my age (early 40s) or if there is just more of it. My heart is with you, your children, and the rest of your family. Good luck with your appointments today and tomorrow. Many thoughts and prayers your way.

  • Sending love to you, and will be thinking of you all day as you have your brain scan. xoxo

  • sarahbutten says:

    Adding to the thinking about/sending love chorus. I hope you’ll be able to think about other things too. Meantime, I hope you can be gentle with yourself. Really really gentle. Put all energies into your healing & your family. You know everyone around you feels your gratitude for their support–it’s inherent in how people leap to send good wishes & love.

  • melissa says:

    I am new to your blog but wanted ti add my voice to those others WHO find your blog honest and real. I watched my mom flight breast cancer 30 years ago When I eas a tren and listening to you brings it all back, especially regarding your daughter. Sending love and strength from California.

  • MarianL says:

    Lisa, sending you my thoughts, prayers, hopes, wishes, good vibes, healing energy, and everything else I can think of. You are loved and appreciated by so many of us. xo

  • Susan Zager says:

    Sending you good intentions and prayers as you face all of this testing. Hus and prayers your way.

  • JoAnn says:

    you put into words what I am not strong enough to do right now. The mind sickness is the worst.

  • Anonymous says:

    Love to you. Thank you for sharing this. You are in my heart.

  • Anonymous says:

    I cried reading this. Cried so hard. I am so, so sorry.

  • I so appreciate these updates — as usual, you are taking care of us as you, yourself, are in need of care. Thank you for giving so much of yourself. I am here. So much love to you, P, the boys and C. xoxoxo

  • kelly says:

    Sending love and light and strength to you. xoxo

  • Anonymous says:

    Thanks for addressing your dad being in the loop. I thought the same thing. While known for his cardiac success, I am sure he provides great insight here, too. Thanks for the updates.

    • It’s actually the reverse! This is not his area of expertise. I’m so well-read on this that I explain it to him. He trusts me completely in navigating the research and is free to just support me as a dad. 🙂

  • Linda @whatevergirldc says:

    Lisa, my thoughts and prayers are with you. I only know you through Twitter, but I am thinking about you a lot and hope the love and support of your family and friends helps you through this difficult time.

  • Hey Lisa, sending you prayers & positive thought daily. I too saw the tweets asking if anyone had tried Ensure & Boost. I am repeating what I posted there in case you missed it. I have tried both and preferred the taste of Ensure (choc!). The group home where I work use Boost with good results, but I suspect that it might be cheaper.

    Also want to leave the link for a Minnesota company called HopeFULL. They have developed recipes that are nutrient-dense and can be frozen into popsicles so that they are easier to eat. HopeFULL had a Kickstarter project that I donated to in January.


    Here is the link for the Kickstarter project. It has a cool video that explains it better than I could.


    If there is anything I can do for you, I’m here.

  • Pam says:

    Thank you so much for organizing your thoughts at this stage and keeping us posted. It helps (a little bit) to be able to follow along. <3 <3

  • DrAttai says:

    You have taken a lot of complex medical information and have digested and organized it in a way that all can understand – you will help many with your explanation of what you are going through. Sending love and best wishes that you can regain some strength for the treatment that lies ahead. Take good care of yourself.

  • Anonymous says:

    Thanks, but why am I not surprised that you are educating him? You are amazing. 🙂

  • Thinking only positive thoughts, while waiting along with you for the PET results.

  • As always sending love to you and your family. Every step of the way.

  • I’m wishing you moments where you can laugh, relax, and find some peace from all of this. ~Catherine

  • sharon says:

    I know this was hard to write – you provide such depth and detail and it is warmly appreciated. Thank you Lisa. I truly hope that there is more sun than clouds and I pray that the treatments won’t debilitate you more.

  • kfzuzulo says:

    Sending love, Lisa. You are an amazing woman. xo

  • Amy Galloway says:

    I too follow you on Twitter and also enjoy the wonderful @Tristan said it tweets. I don’t get on Twitter on a daily basis anymore (#dayjob) but I think of you and your family daily. Your blog posts are beautiful for their directness. You are forthright in your view of the disease, as well as your family’s response. I will continue to hold you in positive thoughts.

  • Nicole says:

    I just found your blog from the Silver Pen. I was diagnosed with triple negative breast cancer in 2011. This year I was diagnosed with metasticies in my bones. I’m 35, and like you I find the “thinking about cancer” all the time pretty hard. I’ve been to the MSKCC Integrative Medicine Center to see Robert for some guided meditation and hypnotherapy. It’s been helping me enormously. Might be something that can help you as well. Wishing you and your family all the very best.

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