Nothing poetic here today. Just a report.
The past week was already one of the most challenging I’ve had this year: my first infusion last week of a triple dose of Cisplatin had me down for the count while I was also digesting the news of the growing liver metastases and what needs to be done to try to reduce those. This week I had a PET scan and CT angiogram of the liver scheduled to assist in my pre-surgical requirements for the Y90 Yttrium radioembolization I talked about in my latest update (the Y90 process is also called SIRT: selective internal radiation therapy).
As a result of the PET scan we got some additional information and what we got was not good. Obviously that isn’t a surprise given that my bloodwork had already told us the prior chemos had stopped working and the cancer has been progressing. The PET confirmed that my liver is an area of increasing trouble with tumors multiplying and growing in size. Not surprising. Also as we suspected, the fluid around my heart appears to be malignant. Then there were surprises: apparently at least one malignant lesion in my brain and new cancerous areas throughout my skull and jaw.
The PET is not a good way to identify exact size and precise location of specific tumors, however. Therefore, on Friday I will need a brain MRI to get good imaging and see exactly what is going on. Then we will see what needs attention, what is watch and wait. Not all brain lesions should be radiated with gamma knife surgery immediately; it is a risk/benefit assessment when you’re shooting radiation into the brain. Obviously, though, gamma knife surgery is a treatment that will be considered once we have details on what we are looking at.
Skull metastases, despite sounding scary, are just bony mets. This is what systemic chemotherapies (treatments that are given orally or through IV that work throughout the whole body) are designed to work on. Brain lesions often need different therapy because many/most drugs do not cross the blood/brain barrier (or do so in an indirect or imperfect way) and so are not effective in counteracting metastases to the brain. Metastases to the brain often require a change in therapy to address this issue.
For now we proceed with the liver plan because that is a local therapy designed to work on just that issue. It needs attention now and isn’t changed (yet) by this new information. As for the rest, I will just have to see what the brain scan shows and go from there. It will be a long week of tests and waiting. Sometimes I wonder how I walk around knowing what is in me and what it is doing to me and still manage to get through the day. I have seen the roller coaster of what this disease does. Some things that sound terrifying end up being able to be managed.
We will be scheduling chemo intermixed with my liver procedures (day before, or maybe a few days after), adjusting the chemo doses to lower ones so that there is time for my blood counts to rise in the time needed. It will be an art and science to balance. By then we will know if the Cisplatin is working. I can only hope that it is and that it will. We have a few choices lined up for if it isn’t.
While all of this goes on I still search for that laugh, I still appreciate the small things.
Most people know my “bit of beauty” tweet by now (“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.”). Judy Clement Wall has made this into notecards and a print and is donating all funds from sales through 2014 to my research fund at Sloan-Kettering. If interested, go here to her Etsy shop. I know that this is the quote many people will remember me for most. But I have another tweet I like to send out. Some days this one just feels right. It is:
Make the most of this day. Whatever that means to you, whatever you can do, no matter how small it seems.
For now, and again, I say: Onward.
(A housekeeping note: for anyone who has signed up to receive these posts by email but sees that posts aren’t arriving: you must confirm your subscription by clicking the verification option in the first email you will receive. If you have been wondering why you aren’t getting the emails, please re-sign up from the home page at www.lisabadams.com, upper right corner, and make sure to verify. There are loads of unverified requests and only you can do this part!)
Link to Twitter
You are forever in my heart. It kills me that I can’t hug you and hold your hand because we’re so physically far apart. You are so special to me and is never get through a day without your beauty and perseverance to help carry me through. You’re my heart. Love you sweet friend.
Wow, a triple whammy week. Your strength continues to amaze me. Like Ann said, I wish that I could hug you or somehow physically convey what is in my heart.
Just know that there are so many of us out here that care so very much, even though we’ve never met. I’ve only “known” you since the Keller nonsense, but you have had an impact on my life and outlook. I hope you have much more time with your family and to continue your positive impact on the rest of us.
So thankful for both your wonderful voices, Lisa and Ann. Thinking hopeful and grateful thoughts at you both! You are changing lives up here in the wilds of Maine.
Dear Lisa,
I have been following your blog for a while, your story and the way you express what is going on, as well as how you handle and discuss your situation with your family and others is exceptionally clear and so wise. I find myself often thinking about you and how you are doing. It has become a habit om mine to log on to see if you have posted any new updates.
I have wanted to write something to you for a while, but I find it difficult to find the right words. Mainly I just want to say that I wish you All the strength you need. I’m thankful that you find the time to share your wisdom. I’m thinking of you, and from the bottom of my heart I wish you All the best!
Dear Lisa,
Charlotta’s eloquent message to you today speaks for so many of us who have followed your journey.
Sending loving thoughts to you…
It’s mostly by following you closely for a while now that I’m able to feel nearly as calm as you sound here. It seems you give us the very latest info on the ways and means of breast cancer management, struggling through its effects as you do so. So, yes, not too worried about the brain lesions, yet, and am glad you’re forging ahead with an aggressive attack on the liver problem. Incredibly, you sound far better now than you did around your last hospitalization, so somehow you gain strength as this disease tries ever harder to bring you down. Ain’t happ’nin’. Not yet.
Hi Lisa. My name is Monique and I have been following your blog and reading your Twitter posts for about 6 months. Although I do not have cancer, I have suffered through flare ups of an idiopathic nerve condition that had symptoms of excruciating pain. I am doing well, now, but have great empathy for you and others that are struggling with health issues. I applaud your strength and determination to see the good in your life, namely your children, dog(Lucy) and the beauty of nature in your garden. This world is truly amazing in a way that you sometimes can only see when you have suffered. I, personally, don’t think this beauty ends here. In my mind, this is just a glimpse of true perfection that is on the other side. Love, peace & empathy.
I am so sorry that you’re facing so many new challenges. You are so brave to share these with everyone. I wish you success with the Y90 and gamma, if needed, and a long period of stability ahead. I am walking a similar path and am all too familiar with the feelings you describe. X
This Thanksgiving I will give thanks that your generosity of spirit has allowed me to share the strength you maintain on your journey. You have taught me that only by giving up do we lose a battle. May you have peaceful days with your beloved family this holiday season.
I’m sorry for this news. At some point you just think there has to be a switch and the news has to be good, right? Cisplatin is tough stuff.
As always hoping the best for you.
I am sorry you have to deal with new disappointments again. Even though new bone mets are ‘less bad news’ compared to brain mets or liver growth, it is not what you want to hear as a mother with a young family.
I wish you strength to deal with this new information. I hope cisplatin works for you and so will the radioembolization.
Your mental strength astounds me. You are a daily inspiration and reminder of finding beauty in small things. You have instilled an abundant sense of gratitude in my heart for even the most mundane of days–ESPECIALLY the mundane days.
Sending you thoughts of light and love and peace… xo
This is my first comment here, although I’ve been following you for far more than a year on Twitter now. I work as a science writer at a cancer center, and I begin each day at work by looking at your Twitter account the first thing in the morning to see if you have any updates. (I hope you get that it is not in a creepy stalker kind-of-way but in a nice friendly sisterly thing since I feel somehow “know” you after following you for so long). I don’t know what challenges life will throw my way, but if I can have half of the strength, calm, and grace you radiate right now, I will be very lucky. Please know that your calm dispassionate way of talking about the science amidst all that you undergo is an inspiration for me. Thank you for all you do! Your children must be proud.
Today, I will focus on those bits of beauty, thanks to your reminder.
Thank you for that, always.
This Thanksgiving, you are one of the people I’m thankful for!
Dear Lisa,
I am so sorry new challenges have arisen and thank you for continuing to share and educate us on this difficult and scary process you’re going through.
Ever since I’ve met you, I’ve taken your advice and positive tweets to heart.
I wish I had something as powerful to say to you.
I’ll be thinking of you during this difficult week, hoping there’s a good plan in place to help you move onward.
All my love to you. xoxox
You are always in my prayers Lisa. Your bravery and ability to continue to write about what you experience in this difficult journey astounds me. Thank you for helping so many people in so many ways by continuing to share your words.
The 22nd of November marks the first anniversay of my beloved mam’s death from MBC. To say I miss her is an understatement but you remind me alot of her. Both brave women who fought this god awful disease with such dignity and never gave up. I hope you get some better news soon Lisa, you’re always in my thoughts. Hugs and strength from Ireland xx
Not a day goes by when I don’t think of you, sweet Lisa, as I find my bit of beauty for the day. You are big part of that beauty.
xoxoxo
Dear Lisa,
Like many here, I have been following your fight for a long time, but have not written because words just fail me. I wish I could send you strength to go with your courage. Dealing with two sick parents and a young child, and some health issues of my own, sometimes I feel overwhelmed, and just feel done; but then I remember to look for the beauty, to take a breathe, and to appreciate the good, to just try to be in the moment with my child, hold my husband’s hand, and I find a little peace – and I have you to thank for teaching me to do that. Of course I *knew* I should do it, I wanted to do it – but you have shown me *how*. Thank you for your advice on talking to kids, for your beautiful poetry, and for sharing your life with us. I only wish I could give you something back. Although I am a stranger I am sending you love, and joy, and thanks. I am hoping you get a break and have some good news to share sometime – but good news or bad, we’re here for you. And hey – In finally writing to you, which I’ve wanted to do forever, have, for today, begun to make the most of this day.
You have so much on your plate; thank you for taking the time to write. I appreciate it and wish you well as you handle all you have.
The roller coaster of this disease seems like such an understatement. I think of you and Ann daily; always with love and hope. Both of you have a resilience that shines.
Love,
Jody
So sorry of your suffering….you words and groundness is impressive and humbling.
Your strength amazes me….I wish there was something I could do or some magical words I could say to make it all better….You will always be in my thoughts and prayers !!!
Just more hearts. More and more. Whammy, roller coaster, and whatever else we call it all, you continue to model grace and clarity.
Lisa, your incredible calm and strength never ceases to amaze me.
Sending you love and good vibes from across the pond.
xxx
I’m so sorry. Sending you peace and other good thoughts. XO
In a thesaurus, the word courage should be followed by Lisa Adams. Wishing you love and peace.
Oh, Lisa. I stared at my screen for a long time today. Eventually,I gave up. I have no words, but I want you to know that I will continue to hope that there is good news to share in the upcoming months.
Please know that you are in my prayers. Chemo is tough, but you are tougher. remember that may people care about you and your family.
I am so sorry to hear this news. I find your strength amazing. Hopefully, there will be some good news in the next week or so. Thank you for continuing to inform and enlighten us.
Lisa, I am very sorry to hear how rough it’s been. Sitting here wishing you didn’t have to be so strong and muster all your energy while simultaneously amazed that you even wrote this post. May laughter, rest, hugs and warmth be abundant.
Lisa,
You demonstrate a grace and resilience that others can only strive for! This disease is a wiley beast and am in awe of your calmness as the hits just keep coming. You continue to teach me to have “an attitude of gratitude” each and every day. My wish for you as always is …time..,,lots of it! Sending you peace and strength!
XOXO
Among many lessons, the most important one you are teaching me is that we have no guarantee that there will BE a tomorrow, so today is a gift. Thank you for the reminders, and for sharing your incredible strength and clarity. Love from yet another stranger.
SHIT SHIT SHIT!!!
It tires me to read of all that you are going through and I know how exhausted you must be.
Do you drive/get driven back and forth to SMK several times a week, or is anything being done locally?
I am so sorry about this latest news and hoping (not praying) that something works soon.
L,J
Chemo and many scans are done at the new Sloan-Kettering building about 30 min away. Transfusions, procedures, some specialists (palliative, cardiology, neuro, etc.) still require NYC trips.
Love to you.
So sorry you’re getting hit with so much. I hold you in my heart.
Lisa,
Have you changed course away from the Pablociclib? Just wondering. I thought I sort of knew what course you were taking–but, I guess I didn’t. Thinking of you.
Yes, for now we’ve had to change track to a traditional cytotoxic chemo to really have the best chance at beating this down quickly. Really chomping at bit to get to Palbo so maybe can get a bit of a break for my body from these chemo agents.
Thanks for letting me know.
Your mental toughness and calm center simply astonish me. What an inspiration to us who read your words of gratitude and love. Everything that crosses (fingers, legs, eyes) is crossed for some good news.
Whenever I need to muster strength to get through a difficult time, I will think of you. You are an incredible person, and I feel honored to have come across your blog about a year ago. The fact that you are continuing to share your stories and thoughts at this time is an incredible gesture on your part. But it is resonating and changing the way many of us view our own lives.
Lisa,
I am thankful for the information you provide for others, especially MBC Superstars who need the honesty you share. You are an amazing woman who has found a truly amazing calling, to share and educate others through your journey.
Just some history, to make this make more sense: My daughter Lisa, had MBC with only liver mets, I can’t believe I said only because it really did a number on her, even though she acted like it was not that bad. I lost her in Feb 2013, she is and was, my hero.
Just your name grabbed my attention, and your story grabbed my heart. I cannot tell you how your honesty has gripped me and has caused me to add you as my hero, also.
Saying prayers every day for you and your family. And prayers of thanksgiving for your open sharing of this information.
I was a radiation therapist for over 25 years and I know your comments about the mets, which ones are no worry and which ones are, are right on target. Those incites are more priceless gifts you offer to others.
Sending you another mother’s love as you continue on this road. xoxo
Dear Lisa,
When my ocular melanoma metastasized to the liver two years ago, I was scheduled for SIRT but the tumors were growing so fast that the doctors felt that chemoembolization was the better choice. I had six rounds, alternating lobes. The first two infusions were doxyrubicin with microscopic glass beads to accomplish the embolization; the last four were BCNA with a “slurry” of a gel like substance that dissolved after a couple of weeks. This treatment saved my life for six months, successfully necrotizing the many lesions. New lesions then appeared, but by then I was able to land a seat in a clinical trial of the Merck PD-1 drug, now FDA approved on the fast track. These embolization procedures offer hope and time, and I hope your treatment gives you both. My heart goes out to you and your beautiful family.
I have been reading your blog for quite a long time now and following you on twitter for a while but rarely comment. I admire your tenacity and courage. Your willingness to do all of this publicly is admirable and a great role model. Your determination to continue to pursue new treatment options has been made more poignant for me as my 8 year old niece was recently diagnosed with a DIPG brain stem tumor, no real treatment options that work, palliative radiation, no long term survivors:(
Your strength and ability to appreciate small things each day is an inspiration to me. Your grace and ability to remain calm amidst all you are going through is incredibly powerful. Thank you for sharing your journey.
I check your blog and tweets each day. Always in awe. Thinking of you and your family daily.
Lisa, sometimes when people hear bad news we don’t know what to say, so we say nothing at all. I want to avoid that tendency. It is certainly true that I don’t know what to say regarding this most recent news, other than I think of you often and hope (and pray) that you and your doctors find an appropriate management treatment. On another note, I happen to be reading a book that is on your “I Like” list — “Still Alice”. It is definitely on the top of my list of favorites and was pleased to see that you agree! In fact, I will be looking to your list for my next great read. Thanks for being an inspiration in so many ways.
You may not feel brave but you are, sending love and prayers you are a warrior x
Lisa,
I am among those who have been following you for a while but do not usually comment. Other people’s comments usually express the same thoughts I would have; however, I wanted to actively say how much you mean to me (and to many). Your courage and beauty in words and action are inspirational. My BC prognosis and treatment were so similar to yours (before MC) that I feel a particular kinship with you. Each case is different so I am not making any assumptions. I am just saying your words really speak to me, especially your poem titled “I think so too.” I frequently think of you and add my love and virtual hugs out into the universe to you.
Dear Lisa
As always, you are only a though away.
My mum used to say “As one door closes, God opens another”…….I say “As God closes one door , he bloody opens another…slap bang right in the middle of your face !!”…..keep doing what you,re doing girl coz you doing it bloody great !!!! xxxxxxxxxxxx
just had knee replacement so just seeing this. Sorry about this latest development. I’m think of you every day and wish the best for you. Going through the pain of TKR I thought constantly how you must struggle every day with no end in sight. xxoo
Hi Lisa,
I am also a Stage 4 with liver and bone mets. So sorry to hear that the chemos do not work too well for you. Over the last 5 years I had some which worked , and some which did not.
My liver mets are quite extensive, and it looks that I am getting to the end of the road.
I am expecting the Carboplatin /Gemzar to be my next chemo combination.
Y-90 procedure is not available in my cancer clinic for breast cancer liver mets.
I wish you all the best . Cisplatin is a hard chemo but works well for some of us.
I believe that you still have Halaven which reduced my liver load by 50%, but did not work for too long.
Christine
I hope you believe in prayer, cause I do and it sure helps in times of trial. I am praying for you.
I just wanted to say that I am really sorry for the loss of your friend Ann. I have followed her and Chris’s blog, as I follow yours, from here in the UK, and think you are all awe-inspiringly amazing people. Your influence is deep and wide, and you set a fantastic example to us all. Thank you and love, Sarah
I am praying for you