These are very rough days. Finishing whole brain radiation tomorrow (Friday), have completed one week of liver radiation and have one more week to go. Immediately after I complete those (Christmas week) I will go back to systemic IV chemotherapy. The Y90 SIRT procedures to the liver are not able to be done right now because the brain mets needed immediate attention and we couldn’t afford to have the 6-7 weeks of full Y90 procedures afterward while the rest of the body went untreated.
It is possible since we are only radiating the right lobe of the liver right now that we will later Y90 the left lobe if we can get some stability after radiation and chemo but that is to be determined. You always have to be willing to adjust to what the day brings and what the best new course of action is.
For now I have side effects of being wobbly, absolutely fatigued (unable to walk well or move), dehydrated, pain and nausea. It hasn’t gotten to the worst point it will and we are managing medications each day to deal with each days’s issues. My palliative care doctor and my medical oncologist as well as radiation oncologist are all monitoring me closely.
I have been at MSK for IV fluids and magnesium 4 days this week, radiation for five days this week, and tomorrow I will even then need to head down to NYC for platelets for clotting and red cells to combat my anemia. We need these numbers to be up so I can continue radiation and then get right into chemotherapy again.
I’m not functional for the most part and the days are very tough. But I know this is what needs to happen before I can get my strength back and the cancer under control. These are important weeks and months.
That’s all I have energy to report for right now, thank you for the support.
Link to Twitter
Thinking of you everyday. Positive thoughts and vibes being sent your way.
Lisa, so sorry to hear of these new challenges. Please keep being future-oriented, knowing how many people are standing with you, though I think I can speak for all in wishing we knew how to do more.
I don’t want to be one of those people who comes into the comments just to hum and haw about how strong you are; I see it all too often and it always sounds so damn cliché… but I do want to say: following your social media posts of all varieties is an inspiration that I’ve no doubt will stick with me for the rest of my life many different ways. I hope all the time you have left on this earth is as fulfilling as it possibly can be, and I’m glad you’re still here and fighting for every last usable moment.
Thanks for the update, Lisa. Don’t know how you manage that much lucidity, given how rough these treatments are.
Thinking of you and hoping this works well and passes quickly.
Yours,
David
I am in awe at your ability to focus enough to write this after the week you’ve had. You are amazing.
Your bravery continues to inspire. Thank you for sharing your journey with us.
Thanks for updating and thinking of you every day, Lisa.
Last winter there were some very tough days followed good ones in the spring and summer. Oh how I hope these very tough days will be followed by good ones too!
I will send all the prayers that I say and everyone that says them for me that we send them all to you. If I could take the man in charge by the hand I would lead him to your door just to give you and your family relief. So many people tell me I am strong but you are the person in my mind that is the strongest. With radiation on my plate right now and me bitching about pain, I can’t even imagine what you are going though and at this place in my treatment not sure if I would. You are a warrior over and over again, and my pray is this will work now and for a long time to come. Get lots of rest. I wish I could say more and the right things to make it better.
You inspire me and are a personal hero to me. Lisa, you have made a difference in so many lives! I send you love, prayers and strength. I wish you the best of outcomes!!!
Lisa, Thank you for providing this update to so many of us who care and want to support you in any way possible. We hope these rough weeks will plow the way for some much better times in the near future and so admire your strength and stamina in the face of so much adversity. Again, your educational information is very helpful to so many. Sending you comfort and love. Louisa
Lisa, Thank you for the update to so many of us who care and wish to offer support to you. We hope these very difficult weeks will plow the way for much better times for you in the near future. You offer education and insight to so many even in difficult personal times. There are no words for how amazing you truly are. Best thoughts and love are sent your way. Louisa
You hang in there Lisa. You are made of tougher stuff than this thing. xoxo
You tell us what’s what, you tell us you’re “not functional for the most part,” but the cards are designed and ordered along with address labels and stamps.
So this is what it is to be alive. I’ve been reading your blog and silently cheering you on. I value your honesty, your spirit, your will to do everything you can do.
I am cheering you on, every day.
I send love and high hopes.
Ann
Thinking of you Lisa….
We are all rooting for you, Lisa, and sending good wishes your way. May you weather the current troubles without too much suffering, regain your strength for the next chemo- and may that one be highly effective! Know that you inspire and move everyone who reads this blog.
I’m sorry you are having such a hard time, I hope it gets better soon. I’ll be thinking of you as always
I hope that tonight is not as rough as last night and that after tomorrow your strength and stamania improves. It has to be to the point of unbearable and you are so strong in spite of the horrors. Know we are all rooting and caring about you.
Thinking of you and hoping for some positive news real soon.
Big Daddy
try hard, when your awake, look at the sky. I have gone though so much, meds, radiation like you. Find a place to be alone. I have not read a lot you have put out. What I have notice is you ability to shire. I think you could help others much.
Lisa,
May you find strength and peace in the tough days ahead and may your family find the strength and courage to support you. You and your loved ones are in my thoughts and as always I am humbled by your truth and willingness to share your life with us. I thank you from the bottom of my heart.
Holly
(1 1/2 years in remission from Non Hodkins Lymphoma)
Lisa, you keep marching on, facing up to obstacles as they appear, sometimes all at once, like now. Your calm, straightforward explanations of your treatment procedures help us understand what you are going through and why. This educational aspect, interspersed with your thoughts and poetry help us know and love you, even though we have never met. We are all going though this with you. I am a breast cancer person too, but only two years out, so who knows what lies ahead. Like you I live gratefully for each day and so thankful for the family and friends who rally to give love and support.
You are always in the thoughts of all of us who read your blog. Thank you for what you do.
You have our support. Complete support.
Awesome, Lisa! Just awesome!
You go, girl!
I’ll continue to think good vibes in your direction, and I hope that the treatments work to kick that cancer back into submission. Thanks for the update. Take care of yourself, and I hope the SE slack off soon.
Lisa, I’ve been silently with you for the past couple of years…I just wanted you to know there’s yet another person who loves you and supports you and thanks you. Peace, Lisa, in all things.
Lisa, I’ve been with you & your family and friends, silently for the past couple of years. Today, I ‘d like you to know there is yet one more person that loves you, is grateful for your written words and expression of your experience, strength, and hope in facing MBC. Thank you, Lisa. Peace in all things.
Lisa, I cannot imagine it. May your spirit find what it needs to sustain you through this rough journey.
So sorry you’re having rough days. Sending love and light to you and yours…
Thank you for the update.
I hope you get some strength back soon. Thinking of you often.
My thoughts are with you this season, wishing you continued emotional and physical strength. My heart breaks for your children and family.
Sending my best wishes to you.
Lisa,
I don’t remember how it is I came to your site, but I continue to read your posts and think of you often. My heart breaks for you and your family that you must endure such pain, weakness and uncertainty caused by this dreadful disease. You write with strength and conviction- managing each curveball with a certain levelheaded calmness. I will continue to pray for more good days in your future.
Best,
Brooke S.
Scottsdale, AZ
You are an amazing woman, (HUGS)
“Willing to adjust to what the day brings” is one of the qualities I admire most about you. You may be short on energy, but you are full of strength. (I am sure even that is hard to hear sometimes, when so many people expect you to be strong.) I am wishing you continued strength and renewed energy in the coming weeks. And that soon you will be “adjusting” to a period of health and stability.
Thank you for sharing Lisa. I wish I could shoulder some of this burden for you.
Another tough week, Lisa. Thank you for the update. I hope your side effects will become less of a burden and wish you all possible strength.
Your courage and persistence serves to inspire all of us. We are all here rooting for you from all over the globe. Sending love to you and your family this day.
Sharon
Sending hugs and healing energy to help you get stronger. You are an inspiration:-)
Sending best wishes and positive thoughts your way. Hope things get easier for you.
Wow Lisa: I can’t believe your generosity in finding time to update us while your days are so intense. Thank your for your gift of sharing your journey. Always cheering for you. Sending you love and strength.
Please know thoughts and prayers are with you and your family daily.
Lisa, you touch more souls than you can possibly imagine! Thank you for your strength in sharing this most personal of journeys. Blessings and love.
Praying for peace, healing and strength.
Lisa: Thinking of you and wishing you feelings of love and peace. . .
Lisa – I remember that you had a really hard time last winter. And that was followed by a time where you were able to experience some wonderful moments, and great memories were made. I am hoping for that for you now. My bit of beauty – read Tristain’s twitter from the Corgi tweet that you posted. Almost fell off my seat laughing…absolutely precious.
Dear Lisa,
I’m so deeply grateful for your writing. It has allowed me to more fully understand my best friend’s experience. It humbles me and asks of me each day that I be mindful. Your words matter. Do you know John ODonohue’s work? He’s a poet. I’ll leave you with this one, it is a favorite of mine. I’m not religious so please don’t let the title put you off– it’s more spiritual. Xoxo Pam
Beannacht / Blessing
On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.
Dear Lisa,
Your fighting spirit , is a huge support and inspiration to us in my wife’s tryst with stage 4 metastatic breast cancer , here in Mumbai. She had ( T1 No Mo ) breast cancer 28 years ago and it is now 2 years since her MBC. We have run through 4 treatment modalities so far and she is on her 5th line of treatment ( Fulvestrant) .
May the force be with you . Kind regards . . Raj Nair
Thank you for sharing yourself at a time when complete selfishness would be understandable. Your inspiring posts matter to many. Hoping this season brings you joy amid the many struggles.
Many prayers for you this holiday season from Iowa.
Just wanted you to know I’m thinking of you and hoping you receive some good news for Xmas.
Thinking of you and praying for you.