I’ll be heading out soon to the hospital for two procedures. The first, a liver biopsy, will take samples of the small metastases to my liver for testing to get information about the cancer to help guide us in choosing targeted treatments. Features of cancer like hormone receptor status (ER, PR) and HER2 status can change over time and be varied in metastases in different parts of your body. It is important to repeat biopsies as time goes on to make sure you are still using the best drugs to treat your cancer.
The second procedure today is the implantation of a PleurX catheter. This will allow fluid to be removed from the lining of my left lung which has cancer in it. The fluid keeps accumulating so until we can get that reduced I will have to use this drain system at home to remove fluid daily. Keeping that level down will allow me to breathe well. This is a quite a process and I didn’t realize all that was involved. I’ll explain more about this in another post. This link shows how it works for anyone interested.
The main info I want to briefly share is that we now know more about where the excruciating pain I’ve been having is coming from. The PET showed that the cancer in my T12 vertebrae has grown and is encroaching on the space in my spinal canal. I also have an active spot of cancer that’s intense in my left hip. The spine, however, is where we are focusing the attention.
For now, we need to do more tests while I am in the hospital, but the immediate goal is to get radiation to my back and, if needed, to my pelvis. There is a lot to do to get all of that set but we are aiming to get radiation started by the end of the week. I do not know yet anything about what the protocol would be in terms of how many sessions but I do know that it will bring a lot of relief of pain once I can have that done. Until then it’s all about pain management.
I will also meet with a palliative care team while in the hospital to get the best assistance with the pain since it will be a while until I get relief at the source. Palliative care doctors are experts in pain management during all phases of cancer treatment, not just end of life. Palliative care teams help with side effects from the cancer and the treatments and are wonderful resources.
That’s all I have time to share for now but it looks like I still have a bit longer to wait for relief. Obviously this wasn’t news I wanted and I’m still adjusting to it. Once again, this latest development shows it doesn’t matter how you look on the outside; you can “look good” and still have cancer treatments that are not working, cancer that is progressing. This is an important message to repeat.
Right now we are still gathering information to decide whether I will participate in the clinical trial I was set to begin this week.
I hope you all have a safe New Year’s Eve and I’ll try to report back as soon as I can. Thank you for all of the support. It seems like a good time to once again share the link to my research fund donation page at Sloan Kettering in case anyone has those last minute end of year contributions to make!
Link to Twitter
Dear Lisa, thanks for your extensive updates. What a holiday season it is this year. Unbelievable how many hospital visits you have to make.
I am somehow relieved (sorry, not the appropriate term) that your pain is a bone issue. I was concerned it would be something ‘inside’ (lungs, oesophagus, mediastinum, etc). I hope radiation will relieve your pain and prevent further damage to your body.
I wish you wisdom when choosing further treatment. A trial may offer new perspectives. On the other hand, there are numerous well-known treatments available, which have been effective against breast cancer. It is a difficult choice.
I am so sorry that you will have to wait longer for pain relief and that you are facing two procedures today. I wish you strength and clarity as you get through these difficult days & hope that pain relief comes as soon as possible. You are in the thoughts of so many of us who have never even met you. Sharing your story in such a calm and clear way is an incredible gift to everyone–we all have or will have had our lives touched by cancer and you are shedding light into dark corners.
I love you Lisa. You are doing everything humanly possible, as is your incredible team. Just know I am out here, holding you and your family close to my heart today and wishing you comfort soon. Xoxo
Lisa:
That you are able — that you are WILLING — to share your experience, educate all of us out here, at this moment is leaving me entirely tongue tied. As you have written time and time again, THIS is what breast cancer actually looks like. All the pretty pink stories, all the warrior posturing, and the breast cancer “cures” coming our way…no. Today, December 31, 2013, this is the truth of what many are going through right now, whether their cancer was found early, whether they did “all the right things”, whether they went to the “best” surgeon/oncologist/facility — whatever. I literally have tears in my eyes because your measure voice telling us what is happening to you is so extraordinarily powerful. Lisa, you are creating change in others and helping to expand understanding. I know this.
In the meantime, I wish that I had the ability to make your pain disappear, to push back the tide of this damn cancer. Hopefully, the palliative team at MSK will address the pain until the radiation works and the next choice of drugs will be more effective at stabilizing the cancer. I am certain every single person who reads your words wants that for you. (Actually, I am certain we all want the cancer GONE but no magical thinking here…) Your voice speaks for my grandmother and aunt who both died of breast cancer years ago in silence. Your voice speaks through all the fears and myths.
And, damn, come on, now…SOMEONE who reads your blog or follows you on twitter has GOT to know Anderson. Get him over there!
Sending you huge amounts of good thoughts for pain relief to arrive effectively, Ms. Adams. I hope you know how many veritable strangers hold you in our thoughts today. I certainly do as I do every day lately.
Susan
Anderson Cooper?
Sending you warm hugs on this cold day as you go through this. I had somehow blocked it out that the cancer was now on your lung and spine. I have had family members who experienced that and I know it was very painful indeed. I’m glad you’ve got a great team to support you. I’m sorry you’ve got to do all this today though. Holding you in my heart.
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Lisa I am so so sorry. I can’t even begin to imagine pain from that. Of course I read everything, but ugh. You are right- the outside doesn’t always match the inside. You look radiant and healthy, and no one would ever know. You are so incredibly brave and feirce, and a true example of patience and living life. Thoughts and prayers for comfort and clarity coming your way. xxoo Happy New Year my friend 🙂
Many many thoughts and good wishes from over here: thank you for your courage and honesty. May 2014 bring you, your family, and your team all the success and happiness you could desire.
Lisa, if you could only know the extraordinary gift you are giving with your outreach. Through it all, you remain steadfast. I wish there was something I could do to alleviate even a little of your pain. Please know that you are not alone. Many, many people are with you — thinking of you, holding you and your family in our prayers.
Wishing for you some relief from the pain on all fronts as you march forward today. Just know that we are all out there hoping for the best and wishing we could do more. Thank you for sharing your journey with us.
I have worked with Palliatice Care Teams for many years. One of the best sources for anyone with pain. I will forever be grateful to them for their care for my patients. I will be with you in spirit.
Lisa, I wish you pain relief soon, and sincerely hope the radiation will give you a new quality and extension of life. You are an inspiration every day, and I think of you always. Thank you for being so open in sharing. It has taught me to appreciate my days and the people I love more, it has taught me to notice beauty in nature, and it makes me mindful of the passing of time in good health and bad. Know that I hold you in my heart. Wishing you a peaceful New Year. xo
I will keep this short as you have enough to do and on your mind. I just wanted to let you know that radiation (external beam radiation) can work very quickly. A friend of mine had it and she had pain relief with the first session. The sessions are short and no pain involved. Once you get some radiation I suspect the bone tumors will shrink and your pain will let up. I want to say Happy New Year. It may seem like there is nothing to be happy about and I thought about that before writing it BUT there is…you have wonderful doctors and are getting the best care in the world, and family and friends who love you very much. Sometimes these things take time and I know that’s also in short supply BUT you still have hope and that’s more than a lot of people have. You haven’t said much lately about your husband and children but I am also sending best wishes their way. Keep us posted when you can and just know those of us in this virtual world care very much for you. Hugs. xxxx
Thank you for continuing to educate, even in your extreme pain. Your words do make a difference, and bring light to S4 cancers. Donation being made today (for you and my dear friend Kath who is at the end of her 20 month fight with S4 Pancreatic ca), with the hopes that this frickin leap frog and hop scotch treatment of S4 cancers will improve.
This is not the update I was hoping to read! Wishing you a smooth day (and night) at MSK. You are always in my thoughts.
Dear Lisa, may all go as well for you now as it possibly can. I am another of your random followers, discovered your blog about a year ago. I admire your insistence on telling the truth about metastic breast cancer, without banalities and sugar-coatings. You are dragging it out of the shadows, and humanizing it. For what it’s worth, I had my first BC surgery on New Year’s Eve, five years ago. My fabulous surgeon (female) thought the timing was no big deal, and her attitude conveyed my very first lesson in how much life would change with cancer: the old ways don’t apply. When I asked if we could pospone surgery til Jan. 2, so I could ring in the new year, she gently shook her head, and said, “You need to do this right away.” She was teaching me to get it done, get it over, get on with it. You, Lisa, are a zen master in the art of getting things done. (And you so often demonstrate the art of it.) I wish for you this morning gentle nurses, and an abundance of kind concern at every step on your path today. Know that just outside your hospital, thousands of anonymous readers like me are holding you in our hearts.
Thank you so much for sharing this update. I hope you get pain relief
***Correction to my post**** So sorry Lisa for choosing the word “journey” in my post. I realize that this implies “choice” which we all know could not be farther from where you are right now. Screw Cancer and the course it has put you on!!!!
Thank you for the update, Lisa. You and your family are in my thoughts and prayers.
Lisa, I have been reading all of your updates and posts but can’t always comment from my phone. I know you are doing everything possible to treat your cancer and its side effects and to extend your quality of life as long as possible and I ALWAYS applaud and admire the effort. I know you may not consider yourself brave or courageous but reading what you are going through and how eloquently you are able to share it, makes me think of you as both brave and courageous.
I remain hopeful that your pain will soon be managed and that a targeted treatment plan is forthcoming.
You are here and you will ring in the new year and there is a lot to be said in that.
Keeping you in my thoughts, Lisa x
Thank you for sharing. I know very little about breast cancer and I share the general asumption that if found early you are in the clear. Thanks to you and your followers now I know better. I am breastfeeding my first son now 6 months. I had a lump that the doctor said was probably a blocked duct, but to come back after I finish breastfeeding to do a follow up ultrasound. I will keep that appointment thanks to your Monday pleads. Much light to you, today and everyday.
Sending strength for all that you have in front of you. Thank you for the update. xo
What has been eloquently said in the above comments I echo in this space. I do not know you, but I feel grateful for the educational benefits you provide and appreciate the effort required, in addition to the valuable time it takes from your busy days. I keep you and your family in my daily thoughts and prayers, and I keep you in my heart.
Lisa, sorry to hear your news and to hear of your pain. I have had radiation treatment to my pelvis and back and the benefits were amazing. I went from not being able to climb stairs well to now being able to do (almost) everything I could beforehand. I am also hooked up with a palliative care team (here in Australia) and they have been amazing with support for pain relief and just generally as well. They are an amazing group of nurses. Good luck Lisa. Hope 2014 brings you better health and no pain.
I don’t know you except from your eloquent words, but I wish I did. From your words we garner gratitude of things beautiful, joyful, and loving. Here’s to a healthful next year, to successful pain relief and perfect targeted treatments. Sending warm hugs.
I am speechless.
…
wishing you peace and, in any flagging moments, re-mindings of those who so obviously care for you
were I Buddhist, I would bow to you.
Thank you for the update. Sending you love and best wishes for good results from all upcoming treatments.
xo
Lisa,
Lord above. Sorry for the pain but glad you and docs are getting a better bead on it. Thoughts and best wishes very much with you.
Much love,
David
Lisa, you have been on my mind. I just read your posts. I am so sorry that you are having to deal with these difficult procedures and endure pain. Suffering is a part of our world that is impossible to explain. You and your family are on my heart tonight as the year comes to a close in just under an hour. For tonight, I wish you as much relief from your pain as possible. Love, Wendi
Dear Lisa,
I only know you from your posts, but I’d like to say how important and moving they are. It’s important for writers to know about the impact their words have had. Your posts help demystify cancer and its treatments in such a clear and compelling way. I very much hope your pain can be controlled and that your treatments are effective. So many people out here are rooting for you.
I just wanted to let you know I’m thinking about you. I’m really hoping they find you adequate pain management stat. I’m so sorry to hear about the tumor growth, too. Cheering you on, wishing you moments of beauty and relief from pain.
thank you again for this blog.
I found your blog through another friend’s blog and have been following you for a few months. I don’t have cancer but I have friends and family who have been affected by it. I am in awe of your courage, and your willingness to tell the truth about your experience so the rest of us can understand. You are an inspiration to me. May you find comfort in the coming days and peace in this new year.
Love and strength, 24/7.
Jody
Sorry that you are having such a hard time of it. Hoping that you will soon find relief from the pain and a protocol that will keep the cancer in check. A big thank you for posting through all of this.
Thank you for posting about your procedures. You help me remember (I’m stage IV) how quickly things can turn around (either way) and how to enjoy and relish each moment, even the crappy ones. My thoughts are with you for a resolution.
You have become like a close family member to many of your readers even though we haven’t actually met you. Lisa, you are amazing. Thank you so much for these updates. Between my own cancer and that of quite a few loved ones, I sometimes think I’ve seen it all… Then I read your posts and learn so much. You are providing an invaluable resource. But even more incredible is the love that you emanate with every word.
xo
Lisa,
I like many have been following you. I have been silent up until this point. When I read about people offering advice and having inappropriate boundaries I wondered if the following article/model would be helpful for people. You may have already posted it somewhere on your site but here it is in case this is new to you and would be helpful.
http://www.latimes.com/opinion/commentary/la-oe-0407-silk-ring-theory-20130407,0,6378839.story#axzz2pf78xWTP
My heart breaks for you and your family. Thank you for your beautiful words, perspective and insights. Please know you touch many on a deep level. Speaking from the heart as you do is rare and therefore valuable. Please also know that if at any point you need or want to decrease how much and how often you share your message will still be felt and thought about and considered. I wish you small islands of peace and comfort in the midst of your suffering.