The last weeks have not gone as planned.
I had the liver biopsy and PleurX drain put in my left lung on 12/31/2013. I was going to only stay one night for observation and to try to address the pain that I was having. Further tests revealed more information. The pain that we thought was coming from my lung and spine wasn’t just coming from my lung and spine. In fact I have some tumors in my bones in the left hemisacrum and right femur too. The spine tumors are now in more vertebrae than we’d thought.
I’ve actually been in the hospital for 6 days now trying to get the pain under control and formulating a treatment plan with my team. I will need to be here for a while longer. I am starting 10 sessions of radiation later tonight after being mapped this morning. We had hoped to do it in five sessions but for reasons I can’t go into now they have decided this is a better route and will be more effective for the future.
This treatment will stop the current progression of pain, but the way this radiation works for me is that it won’t provide true pain resolution for probably about 2 weeks and then improve further over the next few months. The pain reduction will be cumulative and take a while (long after the radiation is actually over) to see final resolution in my case. I’ll have to deal with this for a while yet.
The side effects because of where they are targeting the beams in my spine will be irritated esophagus, trouble swallowing, nausea, vomiting, and heartburn. The other radiation site in my hips will potentially cause decreased blood counts, pain, irritation, gastrointestinal pain and dysfunction and the like.
My pain is still not under control and I’m on a Fentanyl pump system that allows me to dispense medication as needed in accordance with the pain levels. I will convert over to oral medication and patches when it’s time for me to go home once we can figure out my needs. The pain and palliative care team here is unbelievably caring and devoted. So are the physicians and nurses. I have created an expanded family here already and can’t say enough nice things about the quality of care and total commitment to the patient.
I think for now that’s enough news.
Please, please respect my declaration that I do not want uninvited visitors, any gifts, or any flowers sent during this time. I know the intent might be good, but I appreciate so much those who have opted to instead donate to my Sloan Kettering metastatic research fund instead of purchasing anything for me. I haven’t been able to send thank you emails for those recent donations but trust me, they are appreciated. Good thoughts are also always just fine and have the right price tag!
This is a time when I am dealing with severe pain, a medical diagnosis that is unfolding and serious, and needing rest as much as possible. I do read emails but I am not responding to most at this time.
I was not able to start the clinical trial because of these newest announcements. We will see if I am eligible for it again in the future but for now we have to get the disease and pain under control. I did go on chemo for a few days but it now needs to be stopped during radiation. I will resume chemo after radiation is over and about a week of recovery time has elapsed.
Things change hour by hour, day by day. I’m adjusting the best I can. I hope this will at least let you know where we are, a long way from where I thought I’d be in the first days of this new year. Welcome to the world of metastatic breast cancer.
Link to Twitter
Thank you. xo
Big Hug!!! Believe sweet girl!!
I wishing you and your family all the best Lisa. I hope you can get the pain manageable and enjoy some time together. Thank you for spending some of your precious time keeping us all updated. I started following you when my mom was diagnosed, and have continued reading your updates since. It gives me some insight into what she felt, and I thank you for it. It takes real strength to share the way you do. I wish my mom had, and hope that your kids appreciate what an amazing mother they have. Tour words help those of us who have loved someone with cancer, and I’m sure they help those living with it. I hope you find some relief from the pain and comfort in those you love
Oh, Lisa. Thank you so much for the update.
You are in my thoughts every day and I wish I could relieve your burden of worry and pain with my warm regard for you and for your generosity with all of us.
xoxoxo
Thanks for the update, Lisa. My heart goes out to you, but words won’t do justice to how I feel. Metastatic breast cancer is a beast. I remember being in the hospital for five days as they worked to get the pain under control and inserted the PleurX catheter and port. I was more than ready to get the clinical trial going, but they had to hold back until everything else was under control. Being a patient patient was just not easy. It’s so gratifying to know that the staff have been so wonderful to you. You have loving support all around you. XOX
Thank you for the update and continuing to share so much with your readers. keeping you in my thoughts.
Best to you. Know how many people are wishing you pain free journeys.
Thinking of you and your team as they follow you on your journey.
I know it’s hard to rest because of pain and fear. Hoping that the first is managed quickly, and that the second lessened as you and your wonderful team find the best treatment possible for you.
Lisa,
Thinking of you and your family. Even though we have never met, you have touched my life in a very significant, meaningful way as you have countless others. Love and support to you and your family. Lisa Lurie
Lisa, it is so touching that you are able to update those of us who are praying for you and wishing you less pain. Again, I am sending you hugs and love. You are surrounded by strength and lots of love.
I’ve been following your blog for about 9 months and I’m in awe of your strength and grace in the face of such cruel and unfair circumstances. You are in my thoughts and I wish you peace and pain free time with your beautiful family.
Thank you for being willing to illuminate the darkness of this disease and its treatment. Your words and wisdom bring understanding and comfort to so many of us. Wishing you the best for your treatment and pain relief.
I first discovered your blog shortly after my own breast cancer diagnosis and you had just discovered your cancer had progressed to your bones and lymph nodes. I look each day to see how you are doing and continue to hope that one of the options your team comes up with very soon slows the progression of this beast. Like so many other well-wishers, I hope that you soon get relief from your pain and that with radiation and chemo. those nasty tumours begin to shrink and then continue to shrink as your team determines a protocol for you. As one of the other people who have responded to this blogpost, I too, feel that you have touched my life in a very significant way and I send you cyber wishes for some relief and stability so you can return home to be with your loving family.
As ever admiring of your grace under pressure, your words of compassion and education. Sending so many good thoughts your way.
I hope you get home soon!
Thank you for your grace and strength and eloquence. I am one of the anonymous ones who visits your blog all the time, and I find so much comfort and solace here, I don’t even know why. I read your tweets and feel a lift when you sound better, and feel sad when you are in pain. I think of your steadfast, amazing family: children, husband, parents etc. and I think what a gracious, good life you are living to have such wonderful allies, and to still keep giving so much, so selflessly, to all of us out here.
I just lost my beautiful 2 year old grandson to neuroblastoma on December 20. It was sad, and intense, so painful and also so beautiful. I don’t know how or why, but you helped me through it, I just wanted to tell you. Your integrity and grace, your love of flowers and all things beautiful, your exhortations to not postpone taking care of ourselves, the respect with which you treat everyone you know; you are an inspiring person.
My daughter is about your age, and I have been amazed at her strength too, and her perfect love during this past year when we worked so hard to get him through his cancer. Neuroblastoma is pretty terrible, and it wasn’t pretty.
I wish you all good things, I wish you politeness from friends and no untoward disturbances, I wish you pain free time, I wish you success in the specific trials to come, I wish you time, time, time: so much time with your kind, strong, fine children…
Much love to you
That was a beautiful post. I also wish you strength, homa_bird.
People need to respect your privacy. Just because you are a “public” figure of sorts, not in the way anyone would want, doesn’t give anyone the right to invade your privacy and cause you stress. The most important thing right now is to get the pain under control, and stop the tumor growth. Next comes spending time with your husband and children. Nothing else really matters. Don’t worry about all of us in cyber space just worry about yourself and family. We do not deserve your precious time – that’s for your family. Your blog posts and twitter feeds let us all know you are alive and what you are going through but I think each and every one of us only want one thing – what’s best for you. Hugs from Florida xxxx.
I just want to send you tons of hugs and let you know I am thinking about you and wishing that this plan will work to help get rid of the pain. Thank you for sharing with us. xoxo – Susan
I completely support your decision not to have a lot of guest. I have never understood why people should rush to the hospital to be with you when you are at your worst. That being said, I am sorry to hear about this. I have followed your story for a while and I’ll just say pain really sucks. I live in it daily. Not from cancer but from other medical ‘gifts’. I do hope they can get your pain under control.
And I forgot to say big soft hugs to you.
Oh Lisa I’m so sorry to hear you are still in the hospital. And in pain. And dealing with an unfolding diagnosis.
Sending {{{{super healing hugs}}}} to you.
xo
Lisa, You have allowed so many of us into your life…you are sharing moments of time with both friends and strangers that show such a willingness to inform, to teach and to search for the answers for a cure and for finding a quality life with stage IV cancer. You are a journalist of highest order…you are living the story. I hope everyone will be respectful of your wishes, your privacy and your concerns. I also hope each day brings you closer to comfort and time with your family and friends. We can show our gratitude to you by donating to cancer research in your honor. Thank you for your work to help so many.
We’re grateful for the update and all of us in #BCSM are sending you love and strength.
jms
You need to be using your energy for feeling better, not entertaining visitors. Although my close family was nearby last year when I was hospitalized for 6 weeks, they let me determine when I wanted them to visit and never just “showed up”. No one should just appear.
Many good thoughts.
L,J
Sending huge hugs to you and your family.
It is hard to find the right words.
Rest – accept all of the help they offer and know we are all thinking of you during this big bump in the road.
I don’t know what to say. But you are always in my thoughts, because you have such a great heart and an amazing compassion — and you never cease to amaze me with your dedication to us, your readers. So much of what I want to say are far from enough. So I’m sending you positive vibes from Jakarta — hoping somehow that they can reach you where you are right now.
Thank you for sharing..with such grace and clarity. Wishing you pain relief and positive outcomes.
Dear Lisa, I am sorry to hear you are in so much pain. I hope you will soon feel the effects of radiation, so you will be able to come home.
Which chemo do you get?
Best wishes from the Netherlands,
Diana
In my thoughts and prayers Lisa.
Thanks for the update, Lisa. Hope the treatment produces maximum relief and minimum side-effects. Thinking of you many times a day. Best wishes to you and your family.
Dear Lisa, I wish the year had started on a better note for you. I have been reading your blog for the past year and am in awe that at a point where most of us would focus on family and friends; you always find time to share and educate – which makes the world a better place for all us, especially your wonderful children. Best wishes.
there are no words…… just feelings…… and i feeling them for youl xx
I don’t have any words to offer. Just an outreached hand and a heart that looks forward to reading a homecoming post.
Dear Lisa,
I pray that you can be free of pain and improve steadily. You are an inspiration to all of us on this journey. Hold fast and believe you will get well.xx
Lisa, you and your family are in my thoughts every single day. I wish you pain relief, rest and a return home just as soon as possible. May the radiation do what it needs to do just as quickly as possible. xoxo
Your profound kindness touches me, to think of others in a time like this…thank you. Your life, your heart-mind, your soul, are seen by me, and I bow to you in Namaste.
I hope they’re able to get your pain under control soon, and that you’re still able to find something beautiful every day. I read through every post since your most recent diagnosis (My cancer is back 10/4/2012).
Thanks for sharing so much of yourself, and for being so direct with such difficult subjects.
Thank you for sharing this experience. I’m an attorney and one of my clients had metastatic breast cancer. We met a few times over a couple of years while she was doing and updating her will. We didn’t talk in a lot of detail about her illness, but now I can see what she (and her family) must have gone through.
And how disturbing to get strangers trying to visit. Sadly, some people glom on to “tragedies” and think you must mean everyone but them. Maybe one of the therapy dogs could be a german shepard to stand guard at your door.
Wishing you peace and pain relief.
Wish so very fervently that all this wasn’t happening to you right now. I think about you all the time, staring out my window into the winter cold, imagining you in your hospital bed. I update Scott in the evening…even though he’s never met you, he says he feels like he knows you from all that I’ve told him. Thank you so much for keeping us updated.
When (and ONLY when) you have the time/energy, could you paint a picture for us of what you’re doing with your kids? That is, are you getting to see them daily? Probably not — too far for them to come, right? When do they come and how are they reacting? I know this is highly personal, and I wouldn’t ask this of anyone else…I ask only you because you’ve shared similar information in the past, and I know that’s all part of your educational mission.
That being said (and asked), I have another request: please, please only post/share/tweet when you’re up to it. I would hate to hear that you’ve been exhausting yourself for our benefit. To be clear: you have NO obligation to any of us! If we get sad or anxious with no news, that’s our problem and not yours. Much like your no visitors policy, a ‘no posting’ policy should be yours and yours alone to establish, no tact required.
Hoping the Arctic polar vortex is carrying my love swiftly to you!!
I am so sorry you’re having such an awful start to the new year. Sending you good thoughts and hope things start looking up soon.
Lisa,
Your strength and grace are both amazing. Thank you for your continued quest in educating all of us. I admire your dedication and commitment to this cause. I know many people will forever benefit from this blog because of the knowledge and experience you have shared.
You are in my thoughts…wishing you much better days ahead.
Big virtual hug to you.
Thank you, Lisa, for sharing your very personal journey. Praying the new routines provide relief. Sending love and hugs your way.
Haven’t missed a single of your posts in a long time… haven’t commented much for absolute lack of words
I send you a warm hug and my constant positive vibes…
Simply sending…love…
Pamela
Dear Lisa,
I’m so sorry you’re suffering so much, and I’m awestruck by your grace and grit. Cancer sucks. No doubt about it. I appreciate you using the platform you have to shed light on what metastatic breast cancer is like. But please don’t tax yourself.
I’m sorry you are in so much pain and dealing with so many side effects. I am still hoping Anderson Cooper makes it to your bedside though.
Thank you for find the energy to write an update for us. Hope you can get enough relief from the pain to get some rest soon.
Dear Lisa,
Please know that all of us are praying for you and your family; praying that you get some relief, praying that you get some peace in your heart. Feel the love that we are all sending you and know that you are surrounded by folks that care so much. I am so sorry that you are going through this.
Just wanted to tell you that you are daily in my thoughts.
I am so sorry that you have to deal with so much pain.
Please take good care and rest a lot.
I’m glad you’re in such capable and caring hands at the moment. I’m also hoping that you find some relief from the pain soon.
I feel privileged that you’re sharing this journey with so many and you must know that so many are rooting for you.
Sending you transatlantic hugs, as always.
xxx
Dear Lisa, I too am so sorry that you are having such problems. I hope things start turning around in the positive and you are able to get back home to your family soon with your pain under control. Thinking of you . . .
Again, thank you for your honesty and words that serve to educate. Sending hugs of comfort and strength.
Thank you for the update. Sorry things are not going as planned. It is so hard to deal with things when there is so much pain. My thoughts are with you and hoping that things turn the corner and start improving.
My thoughts and prayers are with you. I am especially praying for pain relief. I’m also hoping that you are having time with your kids–moms need that! My sister had treatments at Sloan Kettering and they did outstanding work. I am so glad you are in such capable hands!
Dear Lisa,
I’m so pleased that woman’s courage crossed the Atlantic ocean up to Italy. I wish that your words will help readers to give the right priority to family,people, happenings and things: thank you for the example. Good luck for the next 2 weeks and keep in touch. Warmest Regards.
Gentle hugs to you. Bless you for sharing your story…it means everything to someone like me, with MBC that isn’t stable right now. Read about your wonderful blog after reading a Slate article about a wrong-headed article about your blog. Glad the article was misguided enough to warrant a Slate reaction was a blessing in disguise. Getting pain and other side effects under control is the pits, and so exhausting. Wishing you spaces of peace and comfort.
Lisa: Sending you healing thoughts and hoping your pain subsides. We met at Dani’s writing weekend and your poetry and essays are beautiful. Be strong and keep writing. Paula
sending you thoughts, trying to take away some pain, wrapping you in comfort, my hands absorbing from afar, if only it might really help somehow.
I hope you are feeling ok. I have watched your blog for a while. I too have mets and have had alot of the same systems as you. I’ve had fluid removed from my lung. I have cancer in my spine, hip, jaw etc. I can not have any more radiation although it was suggested at a tumor board but docs decided against it. I’m curious, has your pain subsided after radiation?
Hi… The complete effects of radiation take weeks to months to be fully realized; they don’t happen immediately. So I won’t be able to give you an accurate answer for a little while to come.
For now there actually may be an increase in discomfort as the side effects from radiation are at their worst at the end of the course of treatment. So things get worse before they get better!
Adding chemo to the mix will help too, of course… And hopefully shrink the tumors down as well.
Thank you for having the courage to share your experiences with cancer especially inside of all you’re going through at this time. You are making a big difference for others who are learning SO much from your having shared so generously. Sending you light, comfort and healing energy. Thank you. Amy Blackburn.
I am thinking of u and wishing u free of pain and loss and fear. I am one of thousands who are moved by your courage