I had my PET scan on Thursday morning and received the results yesterday. I suppose the best way to simply summarize it is that it’s a mixed bag.
There is mild progression from my scan in April. This means there are more sites of cancer in my bones that are large enough to be detected on these scans (“hot spots”). One hip, one side of my pelvis, one thigh, more tissue and some nodes in my upper chest are all newly affected. Many ribs and one vertebrae continue to be pretty plagued as well but were already lighting up on previous scans.
That said, it is good news that the metastases are still confined to my bones and nodes (honestly, I can’t believe the things I call “good news” these days!). There is no evidence on the scan that it has spread yet to my liver or lungs.
So the scan is overall worse than April but still better than October in that the spots are in the marrow and not eroding bone itself (the fracture I had in my collarbone has healed and the cancer diminished there). This is good and also has the benefit of keeping me mostly pain-free. My chemo causes muscle inflammation which hurts but it’s surely preferable to bone pain. Most other side effects have been the same as before.
So here is where it gets tricky. And if you haven’t figured it out by now, this whole business is quite complicated and full of guesswork. My tumor markers had been rising and it looked like we would need to move to a different chemo. At that point (about a month ago), we decided to increase my chemo dose and see if we could get a response. After two weeks my markers dropped. That was right before the scan.
So, one takeaway is that we are learning that my bloodwork is quite accurately reflecting the cancer’s response to chemo. This is not the case for everyone.
So the million dollar question is: is the scan reflecting the peak progression this time and now that I am on a higher dose of chemo if I continue to have lower markers will we see the scan reflect this in another few months? That is, is the scan showing the worst it got and now with the recent increase in chemo it is actually on a downward trend? That’s the hope: continue to see response. Only time will tell where on that dynamic process this static measure is.
This information puts me in limbo yet again. But that’s really what this world of metastatic breast cancer is. And you know, I would rather have limbo than definite bad news (again, I chuckle at the straws I grasp at here…).
I won’t go into details because this post is growing long, but I did meet this week to discuss possibly enrolling in a clinical trial at Sloan Kettering. This would be a phase 1 trial and would be a strict chemo protocol. I will do a separate post about trials in the future because I think there is a lot to learn about them and also a lot of misinformation about their use with this disease. Bottom line on this particular trial: it wasn’t one I would definitely jump to enroll in. Some additional time to explore it and other options some more would be nice. So “limboland” helps with that, too.
For the next few days (and likely the next few weeks) I will continue taking the higher dose of chemo daily, monitoring the bloodwork every two weeks. I’m having shortness of breath for the first time this week and that is quite unpleasant. It is a side effect of the chemo.
The results are not what I hoped for. But onward I go.
I deal with what is, I adjust to new information as quickly as I can and forge ahead into the unknown.
I thank you for your care and concern this week. As always, it takes some time for me to gather, interpret, and process the information before coherently getting it out to you all.
Link to Twitter
Every time I read your post, I want to comment. I never know what to say, even though you’ve guided us with suggestions. I know my good wishes will not cure you and may not even lift your spirits. Thank you for sharing all that you do with us. I’m Listening and Feeling… and Hoping.
Lift my spirits? Absolutely. Your words are lovely and most appreciated. Thank you for your support always.
We grasp where and when we must. I call it survival mode. Positive energy and thoughts are sent your way. And as always, thank you for allowing us into your life.
It’s hard to learn to love living in limbo land, but we must. Wishing you peace and serenity.
I have asked myself a number of times why I read your blog. We all know this story will not have a happy ending, we just don’t know when. We hope that it will be far in the future. The information you share must be enormously helpful to so many people, and all of us who have lost people thank you for that. The fear is always that we or those we care about will need to learn what you are learning. Cancer not only frightens the people who are ill, but it also frightens those who have loved and lost. It affects so many more millions of people than are recognized. Perhaps, as it should be, the efforts are all for those living with the disease directly and personally. I have concluded that I read your blog because over time I have come to care about you. Like others, I worry about every one of your blood tests and scans. I like your kids and do not want to see them sad. I admire you. It is extremely frustrating to be able only to stand by, but that is our task in this. And so we do and so we will.
As always, I’m grateful for the clear-eyed breadth with which you share your life. Even during this busy week, I found myself worrying about your results, and am glad you took the time to tell us about them, though of course not as glad about the ambivalence you inevitably feel about the results. Sending good wishes/love/the online equivalent of strong, delicious coffee–
I so appreciate the update, Lisa. I’m glad you’re not in bone pain, but the shortness of breath has got to be scary. I also love your twisted sense of humor — I get it. Thank you.
Just wanted to leave a note to let you know I’m reading and thinking of you. Forging into the unknown is something you do better than anyone I’ve ever met (or not met, as is the case with us).
I’ll see you on Twitter but wanted to leave some love here.
xo
Hill
Thank you for the update, as always. xo
You have no idea how appreciative some of us are to understand, through your words, the true struggles of metastatic cancer. You continue to teach and guide families along the way with your sense of honesty and no BS ways. Thank you!!!
Listening, present here #fearlessfriend!
Is a BMT an option if the metastases are still confined to the marrow or is it assumed that there are foci which are too small to show up on scans now? Thank you for sharing your journey. Hugs.
No, that is not an option I’m afraid. They don’t use them for metastatic breast cancer; they found they weren’t effective the way they are for other cancers (especially some blood cancers).
Mostly good news, I guess! Still “only” in bones and nodes, that’s good. I hope you can cope with the higher Afinitor dose. The longer you can continue your current therapy, the better!
Once again, Lisa, you have taken a complex series of very personal events/ test results and you succinctly, intelligently, and generously educated us all. The analytical, emotional and often humorous prism, thru which you write disperses a beautiful light on a dark reality… We are all drawn to your ever beautiful light. Together, we will continue on this journey with you, connected by every blog, every update, every tweet you selflessly share with us all. In return, you have our compassion, hopes, friendship, love and deepest appreciation for everything you do to enrich our lives. You are a beautiful human being, Lisa, and I am so lucky to call you a friend. Xoxoxo
Sounds overall ‘good’ from an ignorant outsider. Hope you feel the hope, you projected. I am cheering from a distance.
I usually read your blog, but don’t normally comment. I’m not so good at thinking of things to say. Often it seems like there is nothing to say, but this isn’t true. There are lots of things to say; I just can’t really put them into words. You on the other hand have amazing eloquence. Your strength is inspiring. 🙂
Just wanted to let you know I’m reading along with your journey.
I love that you decided to comment today. Thank you.
Thank you for your clear and direct expression under incredible pressure. To follow you on your cancer journey is nothing short of a privlege. Take care,
Kim
Your writing never fails to move me… I read and reread your posts…you write so incredibly beautifully…it is a funny world this internet world…I feel as though I know you…and I certainly care about you and the journey you are sharing with us…
Sending you another long distance hug from south africa Lisa…
Jennifer
Appreciate your directness and the strength you are displaying in this journey. Learning a lot and am sending good vibes your way. I’m not a metastatic patient but I did finish treatment a few years ago. I hate that there is a line that separates those of us stricken with the disease. I know our journeys are somewhat different…But I still feel like we’re all in the same club. Long time reader–first time poster.
I stumbled upon this blog yesterday (the same day I became a college freshman) when I learned that my mom has stage 4 breast cancer – she was just diagnosed a month ago. I just want to thank you for writing the hard truth and that I’m thinking of you and your family as well as hoping you are all filled with light and love.
I’m always so lost as to what to say. I alway cry when I read your posts because its not fair. It never is. Having lived through this I can only say your strength and bravery and power will not be lost on those you love. It will not, Lisa. They will be powerful because of you and it will stay with them forever. It will.
What you’re chronicling is such a gift to us. You’re in my head almost every day and I’m really looking forward to your “trials” post. Thank you.
You are amazing. This sums it up: ” deal with what is, I adjust to new information as quickly as I can and forge ahead into the unknown.” Amazing. I admire your strength. The limbo is so stressful . . . you are in my thoughts and prayers!
Thanks so much for your updates – the humour mixed in with the information make for inspiring reading – it’s hard to imagine how people coped with all this before the internet. I’m another one who always reads, but doesn’t usually comment, and I realise it is difficult for you to ‘feel’ the support if no one says anything. Sending lots of support vibes.
It’s so wonderful how many first-time commenters there are today! Thank you for making your voice heard, every comment means so much.
Lisa, I can still hear your laugh and see your smile even though it has been (gasp) 26 years!!!! You seem to be a pillar of strength. Wherever you draw that from, I am glad that you have it. When you do have moments of sadness in the silent parts of your day or night, please remember that you are cared about by many who span the different chapters of your life. My wish for you is that you are as comfortable as possible and can find joy in every day. For your family, I want them to soak in your wisdom and love and give it back to you twofold. Be good to yourself. <3
Hi Lisa,
I am sorry you’re in limbo land but glad the news has some good involved. I hope your shortness of breath lightens up.
I wanted to let you know that I think of you almost daily when I see something strikingly beautiful, usually a flower. Your tweets have ingrained that in me. I believe your reminders have helped me tune into the sweeter details of life more regularly. So, thank you.
Warmly, ~K (@tableforlove , the moth story lady…)
As always, you move me.
Be well, every day and all day long.
Thinking of you and how brave , smart and strong you are.
We love you….Patty and Pops.
I haven’t spoken here for awhile but my eye is always open for your updates. You are such an inspiration for people in different health threatening situations. I live with Lupus that has brought new challenges. The biggest and sometimes hardest is just trying to do what you do so well – to be knowledgeable and your own advocate. To know thyself. To say “no” when the side effects threaten long term outcomes. Thank you for all you inspire in each of us!
I also admire the way you write and the way you live your life. Thank you for sharing your story.
Lots of hugs.
I too understand grasping for straws. With this in mind while the results of the scan are not what was hoped for I too agree that the fact it has not spread to organs is a good sign. Hopefully, the chemo will do its job and that you will start to feel better. You always manage to put into words what I feel. Good luck with whatever decision you make.
Lisa I too have been following and don’t always comment. Please know how much I appreciate you being so open and writing about the details which are so important in reference to your specific case. We really appreciate your sharing this with us. I was pleased for you that the blood work is showing what is happening and that hopefully this will continue so you have an idea as you make choices. I hope the increased chemo works and I am sorry about the side effects especially your breathing. You are so special and I hope and pray for good days ahead even though I know there is so much difficulty surrounding you. You are approaching all of this with so much grace and dignity! Hugs and xoxo – Susan
Lisa, like so many other have said, I too read every post, but have probably only commented once. I suppose that is because I don’t feel that I have anything relevant to say — or that I might say the “wrong” thing. You see, my mother died 6 months ago from cancer. And, I feel that if I say something about my experience with her, that it will somehow be like turning the focus away from your experience. Since that is not my intention, I simply keep quiet. However, today I will be brave and share something that this recent post brought back to mind. When my mom was going through treatment, I learned to cherish the limbo days. To me, the limbo days were the days when we did not have a test result or a new symptom pop up. Those were the days where we could simply live our lives and enjoy every moment together. If felt like if we could just live in “Limbo Land” every day, the cancer would not progress and I would be able to keep my mom with me. I remember specifically a day after an appointment last February, sitting in the car with my parents, eating hamburgers and ice cream. I actually thought, “If I could keep them in this car forever, maybe we could stop time and this disease.” I guess the reason I am sharing this is because I wish you and your wonderful family many, many peaceful and loving limbo days. – Kerry
Lisa,
Just taking a moment to say my thoughts are with you and your family each day. Your spirit is something to be admired and is teaching me to be thankful every day that the minor issues that happen are nothing more than minor. Wishing a small rainbow of something good to hold on to each and every day.
xo, Mimi
I too have been reading your updates for months now and do not quite know what to say -but because I am a born again believer in Jesus I thought you will find it offense if I comment . And the only way I can comment is from my faith as it is who I am. So I find myself not commenting but just praying for you as if were my sister. But today I mustered up the courage to take the risk and venture out and say hello to you and place a comment – hoping it will be all right by you. I am asking the Lord Jesus to look after you and your family and to give you a peace that goes beyond understanding. And if it was up to me I would take the cancer away from you immediately.
Thank you so much for the blog, I am so glad that your children had an awesome time at camp this summer, and I love reading about your dog too. – Elizabeth
Cancer sucks. Buried my 44-year-old friend of 20 years today. Just soul crushing.
Lisa, I saw your dad last evening; he advised me to go to your blogs to read your “diary.” Your courage and positive attitude are astounding, that is the Lisa I knew at Conestoga Valley. What you are giving us in your blogs will certainly touch our hearts, our families, our friends, and our personal lives. I am grateful to you for sharing your experiences, I am sure that your strength and love carries on through all of your readers. Your insight is beautiful, and so Lisa (I can remember many of our discussions). You are a “Treasure” and I sense your peacefulness during such a difficult time, you are a comfort to many. Thank you for being “YOU.”