A quick update. I’m sorry to say that my hand-wringing and concern in my last post were met with unfavorable results yesterday. My tumor markers were again slightly higher. In and of itself (an isolated rise) it would be acceptable. But this has been a trend for long enough that it’s evidence my current chemo has failed. Goodbye Xeloda. I’m sorry to see you go. I’d hoped for longer than six months on it for sure.
I’ve got a PET scan early this morning (Thursday). It is being used as much to see how much progression there is as to be used as a baseline before starting the next treatment.
I’m still talking with my oncologists about what the next treatment should be (options include oral anti-hormonals and various IV chemotherapies). Whatever I choose will be ripe with new side effects and demand monitoring. My hands will improve; much as I am happy about that, I am truly sorry to see the Xeloda go. I think you always want to hope that the first thing you throw at this disease will keep you stable for longer than this. But, the Xeloda did good work for six months. But we knew this day would come: on to the next.
I am glad there are still things to try. But of course, for now, I’m sad.
I’m still grieving and angry and all of those emotions. But I’m also learning new skills of compartmentalization and recovery. I move forward, I move on, I live. There is no choice. I change treatments and see what I can get from it. My life has become a puzzle shifting pieces; we move and mix them around until they fit. That fit won’t last, but hopefully it lasts for a while.
Do not be concerned if you don’t see a post for a bit. I’m going into research and decision-making mode. I appreciate all of the support from everyone. I know that if hopes and wishes and hugs could cure my cancer I’d be healthy for sure. I can’t acknowledge all of the messages right now and even the thank you notes for Tristan’s birthday party are sitting half-done. For now this is what I am focusing on and being every bit the mom and wife that I can be at every other moment.
Link to Twitter
Dear Lisa,
I am so very sorry and saddened to read this post. Yet the positive is you still have options – that is really great, and hope that any one of these other options can work just as well, or better than the previous! It is very much like a puzzle, but the right fit will come along eventually!
Unfortunately due to my cancer being so rare and so chemo resistant that when mine returns, i do not really have any options at all 🙁 It is wonderful the Xeloda gave you those six months, and i know how devastating it is to realise that its no longer having the effect you so need – plus living with the horrific side effects is only bearable when you know its helping you, it gives you that motiviation to keep going (well, thats what i had to say to myself to ensure i turned up for my next chemo rounds!! Otherwise i would have run, ok not run as i cant due to the tumor in my left hip and leg, but i would have waddled as fast and as far in the opposite direction – knowing chemo was slowing it down gave me motivation to go back!) and i am so glad to know you have other options to try!
Goodluck with your research and i know that whatever decision you end up making and going with is exactly the right one!
Take care, look after yourself and enjoy your lovely family,
Sarah from New Zealand
Lisa I am so sad and so mad for you. You are right that you just move on to the next thing, but easier said than done. Much love and hugs to you my friend as you continue to be the warrior that you are. XOXO
You are in my mind and head all the time, Lisa. I am walking right beside you. Being in research and decision-making mode is good. With your medical oncologists’s guidance and your super smarts, the right decisions will be made.
Be Well, today, all day long and every day that you can~~ I look forward to your next post.
We are here thinking of you while you tend to your self and your family. May you find a good next step and have peace in your heart. xo
Good luck with today’s scan, Lisa. Sending many good thoughts (oh, if only they had real power!) & hoping that you will learn something that can be interpreted as “good” in some way. Hugs to you & your family.
Lisa, I just found your blog and am so glad that I did. You are an amazing spirit and a true gift of inspiration. I will be praying for you and your family. May your heart and research continue to guide you.
xoxoxoxoxoxoxoxoxoxoxo
Lisa,
I recently was blessed to find you thru a twitter rt and am so moved to tears, frustration, anguish and hope for you and your family. Hope for strength and hope for a calm to the storm that rages within and without you. I believe I have felt what your family feels having lost two of the most wonderful rocks in the foundation of my family to cancer within 10 days of each other. The way you live your life as did they is a strength beyond my comprehension and and so admired and cherished. Your openness and words of love and struggle will sustain your family and a gift that is priceless and beyond measure… I know because I live it with my young nieces & nephews. Know that you are a gift to so many that can not be measured or ever really lost. Strength, peace within, and as many wonderful joys as you can have and share is my wish for you.
Lisa, you bring both reality and grace to all of us who care so deeply about you and your family. It is maddening that we cannot be more, do more than read, listen, learn and hope for time for you. Why has no one found a way that we can share our time so that we could donate time to one another? Now you work to find ways to add months and years to your time. You will find every second you can, Lisa, and that is the gift you give to all who love you.
I’m so sorry to hear this Lisa. Your (outward) courage still amazes me every day…perhaps more so with each passing day. Thank you for continuing to share your journey with all of us “strangers” regardless of how painful it may be. I hope the PET is as promising as possible, and that you and your team choose a productive “next”.
Lisa- i came to your blog via the wonderful Suleika. In March 2012 i was diagnosed with a stage 4 brian tumor- a glioblastoma. Prior to my diagnosis, i worked for many years as a child life specialist- most recently at our Minneapolis Ronald McDonald House… my work has focused on siblings and making sure they are included and informed at the appropriate developmental level. so you know your posts have resonated with me on so many levels. (i also grew up with corgis!!)
This paragraph from your post today is amazing in its strength, resolve, honesty- I have been struggling with the paradox of living and dying all at the same time and I love this puzzle analogy- when the fit happens we rest and enjoy- when we are looking for the fit- it is so tiring!
I’m still grieving and angry and all of those emotions. But I’m also learning new skills of compartmentalization and recovery. I move forward, I move on, I live. There is no choice. I change treatments and see what I can get from it. My life has become a puzzle shifting pieces; we move and mix them around until they fit. That fit won’t last, but hopefully it lasts for a while.
thank you so much- much love to you from snowy minneapolis!
persis
If things get a little too crazed go spend some quality time cuddling with Lucy. I am thinking getting her was one of the best decisions you have made through all of this. xo
Oh, how disappointing. I’m so sad to hear this news. I hope the PET scan brings the most-hoped for news and that you’re able to get on a new tx that works well for you. You’re in my thoughts.
I also just found your blog and so glad to have stumbled across such a strong and beautiful woman. I wish you and your family emotional, spiritual and physical strength as you face this chapter.
Scared with you. I so wish that prayer or hope or positive thoughts would cure cancer. Hopefully it helps a teeny bit to know how inspiring you are to me and how grateful I am for your honest sharing…it makes me feel like I am not alone on this awful cancer journey.
Disappointed and sad that you had bad news.
You’re in my thoughts often. I try to be strong with you along with being afraid with you.
Your research mode is formidable and I admire it.
Love and support from here.
Hi Lisa. Am so sorry you’ve hit this bump in the road. I hope your research goes well & you find the best options available to you. Enjoy some time with your lovely family and don’t worry about us, we’ll all be waiting when you’re ready to carry on. I only wish we could do more xx
Prayers be with you my friend
I’m sorry about the bad news, Lisa, but it is good to see that you have an “onward and upward” attitude going for you. You are an inspiration to many.
I compartmentalize a lot – if I let myself “think” about my breast cancer I wouldn’t be able to function as a caregiver, wife, mother, or journalist.
Keeping you in my thoughts and prayers.
Sorry that this treatment didn’t do the trick. Good luck with the scan and with whatever treatment you decide on.
Though I am disheartened with this news, I thank you for the update. I wish I could be there to write those thank you notes for you. xo
You have an overwhelming task in waiting. I feel sure you have the best team possible working beside you and you will make the best next treatment plan possible, and then we will all move forward with you. Take time to rest and recharge. Hug that puppy! You have helped me so much in dealing with my breast cancer treatment and I can’t bear it when your cancer pushes back, even though I know it will. I will be with you all the way.
Love you,
Amy
Thinking of you with lots of admiration and lots of hope.
xoxo
I’ve come across your blog a few posts ago when a friend of mine was in Sirenland and you wrote about how sad you were not to be able to go. Since then I’ve been following regularly and have started digging through the archive. I thoroughly enjoy the clarity and directness of your writing, and the beauty of it. Always a joy to read you, even the sad and bad news.
Lisa,
Love to you. This is not the news we wanted to hear. We’ve got you back.
jody.
Sending you positive energy and strength for this point in your journey. Hopefully, the next treatment will bring equal or better results. {{{hugs}}}
You are in my mind and prayer all the time and God the almighty will help you overcome them!