You have all been so patient with me, understanding why I haven’t been able to update as often as I was doing previously. I’m hoping my report will be worth the wait.
Let’s cut to the chase with some good news: there is no doubt about it, I am on my 5th cycle of Carboplatin and Gemzar and these chemo agents are effectively reducing the overall amount of cancer in my body (my recent previous chemos were not).
So, the cautionary notes are that the chemo will eventually fail; the cancer will either become resistant or I will lose tolerance for it because of side effects or hypersensitivity as the doses go on and the cumulative totals of the drug I’ve been exposed to rise over time. This is a problem that happens with only some chemo drugs; Carboplatin happens to be one. As you may remember, I am trying to ride carbo’s work as long as I can, it’s not for a finite number of sessions. With metastatic breast cancer you must be on some form of chemo/targeted therapy for the rest of your life if you choose to treat it. So this isn’t a permanent fix.
Additionally, I am right on the cusp (my next cycle) of when I will be most at risk for reactions to the Carboplatin. The other drug, Gemzar, is easier to tolerate in general and doesn’t have this same hypersensitivity issue. Of course we don’t know for sure which chemo is doing the bulk of the work here. Ideally we keep them both.
My tumor markers have all consistently been dropping for last 6 weeks and in my particular case, these markers have always been closely correlated with what scans and clinical signs show (many with breast cancer do not have this correlation, you must know your own case; this is one reason why these blood tests cannot be used as tools to screen for breast cancer or metastases reliably).
What does it mean that my markers are dropping? The numbers are going down significantly, indicating that the chemo is working, something I anticipated because I have been feeling much better in last month. “Better” is relative of course. What is “good” or even “great” for me might be someone healthy saying it was one of their worst days I bet! But what is important is that it’s moving in the right direction. My issues now are more chemo-related (fatigue, weakness, blood counts, infections, shortness of breath, etc.) than cancer-related.
My voice has improved! There is no doubt. I am still raspy and if I talk for a while or have to strain to use it, it deteriorates rapidly. But it is such a change. I can swallow more easily which makes getting needed fluid and swallowing pills easier. I no longer need to go for added IV hydration, I am able now to do it in conjunction with chemo.
I can get out more for limited times on certain days. Some days this is impossible because of chemo. And I institute a “no hugging” policy for friends during times I know I’m especially susceptible to infection. I’ve made it to the beach a few times, to more special events for the kids, and for the first time this week could stand long enough to fold some laundry. I am still very weak and incapacitated on many days. But now my “off week” from chemo is better.
Just because people see me in public they shouldn’t assume that I’m “back to normal” or “feeling great.” It is hard to explain that it might have taken me all day to get the energy up to do that one errand or have that one coffee date with a friend, that I’ll need a nap and to rest for the rest of the day after doing it. They might not understand that I was in bed for days leading up to it or will get chemo the next day and not be well for a while. I still have metastatic breast cancer throughout my body, and it takes a hefty toll. Hopefully explaining some of these details can help people to understand a bit what daily life is like for me.
I’m enjoying my garden in bloom and have been taking photos and posting this month on Twitter/Instagram. I’ll be using them with my posts all summer. Every one is taken by me of something in my yard. Today’s are of my beloved Japanese peony, a single petal peony I planted from barefoot years ago. This year it only had three flowers but they were so gorgeous. It’s hard to believe the closeup is of a flower! I think it looks like a sea anemone (some have said it looks like french fries).
So, the takeaway: I’m moving in the right direction for now, for what my particular case of metastatic breast cancer is. Despite many headlines about advances in breast cancer treatments lately, there was NOTHING relevant to me coming out of the big national ASCO conference last month and a good source tells me there really won’t be anything coming out of the San Antonio breast conference for me, either (the few relevant trials just haven’t been going on long enough to have any preliminary results yet). I’m keeping on top of new trials, as is my team, and if there is something that comes up that looks good, we’ll be investigating. For now, for as long as I can, I stay the course on this chemo regimen whether it’s for one month more or eight.
I will try to write more often. I know it’s a bit concerning when long times go by and someone with a serious illness doesn’t post. That only goes to show you how utterly rotten I have felt for a very long time. It has taken seven months (seven months!) to get to this point. I don’t take that for granted. Some with my diagnosis are dead within that time.
It’s so nice to be able to report some good news. It sure does feel like an awfully long time since I’ve been able to do that.
Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
Link to Twitter
So good to hear. Very encouraging and hope to hear continued good news. You are in my prayers.
So grateful that you are feeling better. I remember those days of no energy, and, indeed, it took all morning to get out of bed and shower.
Best to you.
Thank you, Lisa. xoxox
Dear Lisa:
You have made my day! When I get on my pity pot, I think of you and what you are going through, and how could I NOT feel better?
CONGRATULATIONS! I believe anyone with Stage 4 BC with an attitude like yours should be applauded. So here I go, I am thanking you for making so many of my “bad” days feel like a beach holiday. Please take care and continue to improve – for me and the rest of us!
My very best to you and your family,
Fran
This is really good!
Loved reading this.
God Bless
<3
Always on my mind. Thanks for the update.
I can see it now…Lisa of the Reduced Tumor Markers…CHARGING out of her house, bathrobe cinched (let’s hope!) and bed slippers on, camera at the ready, a smile on her face because the air is warm and her garden is glorious. Such is how I’ll picture you, my dear. 🙂
Thank you a thousand times for this update. I cannot tell you how often I’ve thought of you these past 6 weeks of silence (I don’t do Twitter anymore). All I saw were your little ‘thumb up’ under flowers that others posted on FB…maybe even one for me here and there on my posts. (“Oh, lucky me!!” I’d think) I knew your head was down and you were just doing the best you could, but now getting more information is so very sweet.
And the fact that there IS something positive there is all the better. I understand the caveats, but I choose to celebrate nonetheless. I hope you can, too… in your bathrobed way. 😉
Sending you oodles and bunches of love!!
–me
Sounds positive! So glad you have been able to enjoy the beach and see the kidos do their activities. I promise that I will not complain when I have to do my laundry from now on haha. Your flowers are beautiful, really enjoy the pics. Have a nice evening Lisa.
loved seeing good news. Hope to keep seeing more. beautiful flower too…
This heartening to hear, dear Lisa. Glad the going is a bit easier and the movement is positive.
Also: lovely bloom, that peony. Amazing the beauty in a garden. I think of you often in mine.
Xoxo, dd
Good new Thursday, that’s what I call this.
So glad you can enjoy the good weather and your beautiful garden.
xoxoxo
So wonderful to read your post. I have been following you for awhile and was thinking of you today when I decided to log in and saw that you had posted already. I’m happy that you’re finally able to enjoy the beautiful colors of Spring!
Lisa, your courage continues to be an inspiration for me. I read your beauty in the world quote several times a day. I actually put it on address labels and leave them stuck on various places as I travel. Hotel rooms, airplanes, doors, restaurant menus, etc. Thank you for the update. I hope you continue to do well……. And inspire others.
I loved getting the birthday wish from you yesterday and now my heart is filled with joy reading a new blogpost from you. It is so nice to see you active in the social world again, and even better to read the good news. I continue to think of you every day. I am so glad you are enjoying your garden and your family 🙂 Love you!
So good to read that you are doing better on this chemo. Your attitude is so real and so positive at the same time. Am happy you are able to do some things you want to do. Your beautiful flowers, family and friends — wishing you a wonderful summer!
Yay, yay, and yay!
I know it’s not perfect, but you feeling better is pretty perfect.
I’ve had a raspy voice too, because my thyroid is whacky, I think we could start a
phone sex business! No one would ever know we’re peeling potatoes and doing gross
kid laundry. 😉
I love you with all my being.
xoxoxo
Delighted to hear of the good news, Lisa– thank you so much for letting us know!
I’ve been thinking of you often lately, as I’ve just finished up a production of Margaret Edson’s play WIT. Every night as I got ready to go onstage, I thought of you and all those who go through chemo, and wished the best for you.
As your inspirational posts suggest, I try to find beauty in the world and to make the most of each day. Thank you again for your lovely voice: onscreen and off!
It has been a long time since you have been able to share good news. I am so happy to read this post. I think of you often. XOXO
xxoo and virtual hugs
LIsa, my heart is bursting with joy after reading your post. When I saw there was a new one from you—after such a long time—I was so apprehensive about opening it. Your news is wonderful! You make it very clear that your path ahead will be difficult, and for that I am more sorry than I can express. But you HAVE a path ahead and have been able to do a little more, even if some days it is “just” folding the laundry. That is a BIG DEAL, when you have been too wiped out to do that recently.
If I am this happy, I can’t imagine how your family feels.
Wishing you strength and joy. Your flower pictures are lovely. Had no idea a peony could look like that! Enjoy every minute you can.
Much love,
Judi
It is good to read this update. Thank you for using some of your strength to let us know the news.
All you’re dealing with and you still look at the beauty around you. Thanks for sharing your news.
Reading this blog post is my bit of beauty today — not just the wonderful flowers. Sending love and hugs. xo
Lisa,
You are an absolutely amazing woman. So glad that things are better for you. I was thinking about you earlier today, and here is your e-mail! So good to hear from you.
Sincerely,
Barbara Shernoff
So glad to hear to things have eased off a little. Peace and beauty to you and yours!
I go to sleep tonight with a happy heart, thanks for the good news!
Just wonderful, wonderful news; enjoy you’re garden and the greenery. All the best.
Lisa this is the best news I have heard in a long time. I thought things were improving due to your frequent tweets and photos. Even if you do one thing a day that is not cancer related, it’s a good day indeed. I know your family must be thrilled. But they aren’t the only ones, your blog and twitter followers are too. You’ve touched so many lives, I can only hope that you feel our cyber love and hopes. Big hugs xxxx.
I was hesitant to read your blog post but elated that I did. My wish for you is that you continue to “stay the course” of the carbo. and that particular chemo. in combination with the Gemzar continues to work its scientific “magic”. I recite your mantra to myself daily and to a number of my BC friends. Your garden pictures are beautiful and this news is definitely my “beauty” for this day and many to come! Thank you for sharing!
Dear Lisa, Thank you for spending your precious energy to tell us how you are. My thoughts are with you daily, but I realize you your posts will be few but informate and poignant. Here’s hoping your chemo allows you to enjoy the gadren.
Meg
Your photos and words somehow captures life’s wonder — despite all you are going through. Thanks for sharing that with all of us out here … So glad things are a little better!
Something good is something good. Glad you can recognize a small achievement and are even appreciating the beauty of your flowers. I love your last 2 lines, btw.
Long time listener, first time caller.
It was great to hear your voice again. Your report was well worth the wait. You are narrating a journey that none of us would voluntarily take. What you have shared medically, physically and emotionally has made all of us stronger and more resilient for our own medical challenges. I wish we could give you as much as you have given us. And I also hope we will continue to hear your intelligent voice (and view your photographs) for many years to come.
Persevere!
Lisa: I am so glad you finally have some good news to report and I am happy that the chemo is currently working. I am also stage iv, currently doing some palliative radiation. I often feel like I am a “wuss” , and not coping as well as I should, and then I read your blog or twitter feed and I appreciate that you say like it is, trying to educate those who are not sick and bringing comfort to those of us that are. I don’t think anyone can possibly know how bad it all feels unless you have experienced it but you do a great job of describing the entire experience.
I really love your photos of the garden. Do you use a good camera or are they taken using your cell phone camera?
Thank you… All of the photos are taken on my iPhone (currently a 5).
Best wishes to you. Stage 4 truly is hard for anyone to understand physically and emotionally unless they have experienced it. I am sorry you are too.
Thank you for the update! I don’t know you in real life..but I sure missed you. 🙂
Lisa, You are in the thoughts of many far and wide. I am heartened by your post and though you do not post often, and certainly we all understand why, I do hope you still feel the love and prayers that are consistently floating your way. Peace and comfort and love to you, warrior Lisa. I admire you.
Lisa, I’m sooo glad to hear the good news. Thank you for the update, and write when you can. The flowers are gorgeous. Sending you love and hugs.
I am so glad to see this. I am starting carboplatin and taxol on tuesday for melanoma. This is my last drug to try before…who knows, hopefully something new will come out before I finish with this drug combo. So glad to see someone having response to it. Hope you continue to have some energy to do the good stuff…not folding laundry though 🙂
It is so good to see your post this morning. I have been praying for you every day. We have a newly diagnosed breast cancer patient in our community. I met her through my involvement with ACS Relay For Life. She is being very brave through her treatments and her quotes are “Fight Like a Girl” and “My God is Bigger Than This”. I told her about your postings and she said she has gone back a few years and has been reading and reading your blogs. Thank you for your blogs and the help it gives someone else going through this battle. God Bless You!
So happy to hear your good news. I’m sending wishes for a summer filled with many beautiful moments in the garden, and with family and friends. (And for the record- I thought the first picture looked just like a sea anemone, too!)
Dear Lisa,
This is such good news. I agree with “Baltimore” too that you are “narrating a journey that none of us would voluntarily take.” Thank you for doing so. Love to you and your family.
–Gayle
Thanks for the update. So happy to hear that things are going in the right direction. Hopefully, they will continue to get better every day.
Lisa so happy you are doing well and thank you for the update. Prayers and positive thoughts for you. You are a stronger lady and are admired by many. Hugs
So glad things are moving in the right direction & Patty and I are happy you are, once again, able to share and help so many others. Luv you much! & always
Pops
Wonderful to hear that you have a bit more of yourself back to yourself and enough energy at times to relish life again. You have such a powerful voice on “paper” that it’s difficult to imagine how weak it’s been in reality – great to know that you’re “singing out” with more ease and clarity than you’ve had in a while. Fingers crossed that you continue to tolerate both drugs well!
Lisa, I am thrilled to hear your good news. As others note, you & yours always in my thoughts as Mom to a Stage 4 BC daughter, also positive, strong, beautiful like you, Linda
I love the sound of dropping tumor markers and overall improvement in QOL. Celebrating with you,
Jody
It’s so good to see an update from you and one with good news.
I’m really glad that the chemo is doing its job and that you are feeling a little better in spite of the chemo bombardment. I’m enjoying the garden photos on Twitter. 🙂
Many many hugs.
xxx
I love your flower photographs.
This is great news but not entirely unexpected. Your tweets returning to normal frequency and mood telegraphed the improving picture.
I think your tweeting frequency on the net may be as valuable a metric as the tumor marker in your blood, the difference, of course, being the higher the TweetIndex™ the better.
I hope you keep tweeting up a storm for a very, very long time.
I eagerly await any news from you but it is especially nice to learn that you are feeling better and that the current combo is decreasing your markers. Every day that you are here is a good day and I am glad you are able to participate more in your life.
Thinking of you and glad you are starting to feel better. Wonderful that your markers are going down. Thank you for the update.
So glad to hear from you. I am learning from you and it is so important for you to help us too. I too will be on chemo for life but I am well enough to travel. Right now I am in Israel doing the holy land pilgrimage. My numbers go up and down depending on the treatments. Maybe someday you will find a chemo that you can do more,stuff with like me. We do exist. Loving you, Colleen
This post was the beauty that I found today – happy to hear of your positive news.
So glad to hear a good report. Sending you continued good wishes for a summer full of warmth, flowers and improved health.
Your vibrant flower pictures are fabulous. I’m glad you are finding some energy in the day.
Cancer is unpredictable both in how you progress or respond in the metastatic setting. In this post you wrote with metastatic breast cancer you must be on some form of chemo/targeted therapy for the rest of your life if you choose to treat it. I wanted to respond to your post because my experience with metastatic breast cancer has been different than most.
I was diagnosed at the age of 39 with Stage IV breast cancer with mets to my lungs. I took both a traditional and alternative approach to treatment. I have been cancer free for over five years and off all meds for almost three years.
I am not writing this to tell you or the readers what to do or to state unequivocally if you make the same choices I did that you would be cancer free, I don’t believe that. I wanted to share my journey to let you know there are different outcomes even in the metastatic setting. I fall into a very small percentage of people but there is a glimmer of hope for metastatic breast cancer patients becoming cancer free for an extended period of time.
thanks for writing, i dont have words to explain how by writing your experience, it is helping me. God Bless you
VERY good to hear! I have been checking back here for an update and since it was so long I started to be worried we would hear the worst. Glad the news is positive. Keep enjoying that garden when you can, and know that many, many people out here are thinking of you and have been touched by your words.
So happy to hear you’re seeing improvement and getting to participate even a little more in the things that are so important to you. Continued improvement and health!
Lisa,
This is so encouraging to hear. You have been in my thoughts quite often, and I am pleased to hear from you. Hang in there and sending good thoughts your way! Hugs to you from Oregon!!
So happy you are feeling better (than you were), and that there is improvement. Day by day…
So glad to read your update. You truly are creating your own beauty. Thank you for sharing it with us.
Lisa – fantastic update! We think about you, Clark and the family every day! Manson
Lisa,
I am happy to read this post;I think of you Lisa,often.
thanks for this update
Marie
Lisa,
I can only imagine what you’re going through. I am a stage IV breast cancer survivor, but have only had to battle it once so far. I still struggle with getting “out there” and going back to work. My husband and family just don’t seem to understand what chemo actually does to your body and what you have to deal with a couple of years later.
I know you’ve “got this!” Thanks for your update.
I am a silent reader/follower but am so happy to hear this update. I think of your mantra about beauty often, and when I am feeling particularly low or angry about something trivial, I repeat it to myself and found something better to focus on. I wish you many many many “better” days ahead. Thank you for your words, they are reaching so many people.
Lisa: I just started reading your blog! So glad to hear you are seeing some brighter days. Your story is very inspirational and thank you so much for sharing with the world. I am a hospice nurse and your words are encouragement for me and help with the care that I give to my patients and I thank you for that. Bless you and your family for all of the very trying times that you have had throughout your illness. I hope that you know that you help others without even knowing it!!! xoxoxoxo
Thank you, thank you, thank you, thank you! This post feels like a resurrection of a sort and gives hope, realistic hope, to some of us dealing with metastatic breast cancer. I am encouraged and deeply grateful.
Hi Lisa,
Just found your blog, but not new to stage IV cancer, I’ve been stage IV since 2009. I’ve been on several hormonal a that didn’t work for me, Xeloda, my wonder drug for 2.5 years, no side effects, and kept me feeling good, then I went to Taxol for a year, lost my hair and when that wasn’t working, I tried Gemzar. For me, it was the nastiest drug ever, the fevers wore me out and kicked me when I was already down. This week, I fired gemzar and started on navelbine, hoping for good results and less side effects. I’m 38, live in Vermont and was first diagnosed in 2005. It seems to be the only way of life for me. My husband has only known me with cancer. I hope things are going well for you. My tumor markers have been a good indication of my cancer progression and shrinking as well.
I agree with everyone in how much I appreciate you sharing the intimate details of your journey. My mom was just told that she has about 6 month to live and thats with treatment. She’s in good spirits though. She actually doesn’t believe it and says she is not done fighting. Although they found more tumors in her skull and the breast cancer is growing everywhere now, she has been feeling strong and doesn’t feel the pain in her hip and spine she was feeling. I think it was the radiation and the IV vitamin c she’s been getting. She is going to start more radiation just on her head and will start to take Xeloda and tykerb. I feel like im in a fog. It just feels so unreal. I’m so glad your starting to feel better.
Take care, Juanita
Lisa, I don’t know you or your family and just happened to find your blog by chance, but I must tell you that you are quite an inspiration. You have so much integrity. So much strength. You are smart, witty, loving, and one tough woman! I love your honesty and confidence. I wish you and your family nothing but the best! Please continue to blog and share your stories. Without even knowing it, you are helping so many others!!!
You inspire me so much I have had breast cancer twice, I know the fear you walk with daily, GOD BLESS X
Lisa, as a metastaic cancer survivor myself, I want to thank you for your inspiration and positive attitude. I particularly found your words on finding a bit of beauty in the world today…..so exquisitely beautiful. It touched me in a deep, deep way. I have shared those words with many others…and have posted them on my bathroom mirror.
Thank you, Lisa, for sharing your wisdom, encouragement and amazing journey.
Blessings,
Sarah