No news isn’t always good news. A lot has been happening in the last few days. On Tuesday they successfully drained 2 liters from my left pleural space after the unfortunate failed attempt last Friday. There is still about one liter remaining in there (the doctor can only safely remove about 1.5 liters at a time). Think about that: two liters. The size of a soda bottle… a few pounds. From one side. It’s astounding how much space and weight that is. Those are the actual bottles of fluid in the photo.
Everyone kept telling me how great I would feel after the thoracentesis. I did feel like I was breathing easier, but I didn’t feel great. In fact, I had quite a bit of pain. They checked for an air leak by x-ray as they always do after this procedure. There were no visible complications. But there was still tremendous pain starting that day and increasing into the next. It was more than the pain from the reinflation of a lung that had been compressed by half its size. But exactly what it was we weren’t sure.
By Thursday when I had to go back to Sloan-Kettering for my PET scan, echocardiogram, and EKG I was in agony. One of the doctors I met with could see how much pain I was in and prescribed some narcotics. I can’t take anti-inflammatories because I am having a liver biopsy next week and they put patients at risk for bleeding. I am so grateful a doctor seeing me about paperwork reached out to offer assistance and relief.
My father met me in the city. After I completed the required tests he drove me home. I can’t think of anyone better qualified to keep an eye on me than a retired cardiothoracic surgeon. Unfortunately, the pain continued. In all likelihood it is a combination of the cancer causing inflammation in the pleura and some nerve inflammation now that some of that fluid is gone and the lung is reinflated. It’s really all conjecture. We will see if the scans and tests reveal any additional information.
Oxycodone couldn’t keep the pain under control so yesterday I had to combine it with a Fentanyl patch. This duo is definitely helping me more; I’m still in pain but it’s more manageable today (Sunday). Each of these patches lasts for 72 hours and will deliver a constant stream of medication to me. I am pretty much bedridden.
It’s looking like Tuesday (New Year’s Eve) will unfortunately be a tough day. I was already scheduled to have a liver biopsy (This is not to check for malignancies; we already know there are metastases here. This procedure will be for repeated genomic sequencing analysis and other testing to make the best choices about chemotherapy and future clinical trials). Now, given all of the events this week, the team has decided that I need to have a PleurX catheter put in. This is a drainage system that will allow me to remove excess pleural fluid at home rather than having to have it tapped with a needle each time it builds up. The catheter will stay in place only as long as I need it, which will be as soon as treatment starts working and the fluid stops being produced in such copious amounts. I assume this will be at least a few weeks.
Having these two procedures and pain control issues means I will need to stay overnight in the hospital for observation. It’s amazing the lengths some people will go to to be in NYC for New Year’s Eve fireworks, isn’t it? Maybe Anderson Cooper will swing by while I’m recovering.
Once we see the results of all of the tests I’ve had and have these two procedures behind me, we will re-assess the plan to start the second clinical trial on Thursday. The most important immediate tasks at this point are to treat the two symptoms and get my breathing and pain under control. Immediately after that we go to work on the metastases to stop the problems at their source.
Thank you for all of the support I’ve had over the last few days including local friends who have been so kind and some friends who came from quite a distance to keep me company this weekend. I’m just putting one foot in front of the other and doing everything I can to gather all of the information I need to make a decision about what the best next step is.
Of course, as much as I can, I’ll keep you posted. Twitter is always the best way to keep up to date on daily happenings. It’s a lot easier for me to get quick bursts of info out in that medium. So many have asked: I have all of the help that I need and respectfully ask for no visitors or gifts during this time.
I would like to wish you all a happy and healthy 2014 if I don’t post again here before we all ring it in.
Link to Twitter
So sorry to hear this is how your 2013 is coming to a close. I hope the new year starts out with some good news – it sounds like you need it. I’m glad you have the care you need, but I’m sorry you need it.
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Still hanging here quietly by your side as much as I can. I don’t say very much as I know that your attention is needed where you are and I told you at the outset I’d walk with you. Still here sending peace and love.
Thanks for this very important update Lisa. Your post radiates with concern and pain. I am sure you know that people from all over the world are reading your blog post and are sending nothing but good thoughts your way. I am sure if love was a cure you would be 100% well. Your blog is so important for both those sick and well, to read. Your disease could happen to any of us at anytime in our lives and all the things you tell us and write about are knowledge that no doubt will come to use for some of your readers – unfortunately. Just know that all the effort you make on here is not wasted. Every word matters. As I told you in a tweet, I lost my best friend of 39 years last week from colon cancer. She died because of the liver mets not the primary tumor in the colon. You have taught everyone that it’s the mets that kill and that’s true for all types of cancer not just breast cancer. I am only one of many wishing you the best this week. Hugs xxxx
Lisa, I’m just an Internet stranger but I wanted you to know that I am sending well wishes and good thoughts your way.
I would love to keep up with you via Twitter, but I just do not “get it”. There seems to be a lot of “inside stuff” that I just do not understand. Like the thing about you saying something is loud, right after a tweet that said there is a step up and a step down from a room. Who said those things and to what do they refer? I think I am supposed to go to someone else’s Twitter page to understand this, but why would I want to read tweets by someone I do not know?
I am not asking for an answer, just saying how incomprehensible this stuff is!
L,J
Hi… if you created a twitter account and followed that way you would only see the messages I post to the general public. You’re probably looking through the website feed I have and that includes *every* conversation I’m having because it’s not filtered. So you are seeing much more “noise” than what you would see if you were following the feed the way most people do. If you do it that way (through the Twitter application) you only see what you want to see.
Sending love and energy to you. I think of you often.
Sending so much support and healing thoughts your way, Lisa. Your strength and determination humble. xo
Oh Lisa, I wish I could help you more than words can say.
I am so sorry to hear this … Big ((hug)))
Dear Lisa,
Reading your posts over the past few weeks have been a real eye-opener for me. I am not shocked at the pain, I have been there, and I am grateful that you have avenues of pain relief. I worry that it is not enough, but when you are in pain all the time at a certain level, nothing will take all the pain away, no matter what, our brains are wired that way, and it sucks, but it is reality. I can only hope that it is tolerable for you and the love you have surrounding you will help to ease some of that pain.
I don’t “get” Twitter either, so I understand Joann when she says she doesn’t understand what is going on in Twitter World, I have tried my best, but as hard as I try the harder it gets. As you can see, it is difficult for me to stick to a 140 character post, so I was sunk from the beginning of my learning.
There really aren’t many words of wisdom I can offer you, except PLEASE know you are not going through this alone, there are so many of us regular followers who would do anything you asked, if you just asked — but I know how hard that is as well. You are fortunate to have a family with a medical background, there are many things you don’t have to explain to them and receive blank faces staring back at you, and I wanted to thank you Dad and your Mom for helping you whenever they can. I know there are some things that are just plain private pockets of hell that you must endure on your own — but please know we are here for you (and that is not just lip service) !!
Take good care of yourself as much as possible, and I will be thinking of you every day, as I always do, and feeling a bit inadequate to come to your aid. But that does not mean that I do not have the intention and desire in my heart, and I hope you will remember that.
I am sending My best to you, supporting you from afar, but nonetheless supporting you through thick and thin.
Love to you,
Fran
Lisa, I carry you in my heart.
I can’t tell you how much I appreciate your detailed explanation of these events. Oddly enough, it helps me to understand what will likely happen with me. I only hope I handle it as strongly as you do. I will try to copy you.
So sorry to hear this. Sending you love and all good thoughts.
Dear Lisa,
Please know that I am thinking of you; you are in good hands at MSKCC. I hope your
pain stays under control.
All the best,
Karen S.
Damn. So sorry you are in pain. I continue to send you hugs of strength. Thank you for continuing to educate, even in your great discomfort.
This helps us all in our individual journeys. You have no choice on going forward and sometimes people think we are so strong, but still God does not give us more than we can bear. Tonight I cover you with prayers and healing light, which is love. Keep on keeping on dear one.
Dear Lisa-
You are so incredibly brave and strong!
My thoughts and prayers are with you daily.
Save all your incredible energy to be with your family – you and your family is amazing. xoxo, cin
Lisa, your posts teach us all how to live with cancer. You model for us the importance of doing your research, of asking for help, of saying yes to pain meds,of keeping a sense of humor in play, and so much more. You are amazing.
I hope the catheter works its magic, and your biopsy Tuesday is uneventful, and you welcome a fresh new year in the company of family and friends!
I am thinking of you as always.
I wanted to let you know how much our families LOVE your notebooks. I get to deliver another on tomorrow.
My husband and I will raise a glass to you on New Year’s Eve-say hello to Anderson for me!
Our hearts are aching. I think of you often and send you bushels of wishes for strength and healing.
Just another internet stranger, who feels so much more than that as I read your ongoing story. Bless you for the information you impart and for the honesty and grace by which you deliver it. I am so sorry you’re in pain and pray for quick relief. Here’s hoping for a clean scan and renewed outlook with the new trial. Sending hugs and healing.
(((((((((((Hugs)))))))))))
I don’t want to wish you impossible things, or offer rainbows and teddy bears. You need relief. That is a possible thing. I am grateful to the incredible doctors in your employ, for your dad, for your awesome family. These people give US comfort. How ridiculous for US to need comfort. But we’re following you. We’re here (like it or not). I want awesome pain meds that soothe you (although #narcotweets are genius). That’s my wish for you.
Now let’s all get crackin’ on the Twitter campaign for Anderson Cooper to visit Lisa.
Damn! So sorry you’re continuing to have major pain. I hope the answers about where the pain is originating and about how to address it are swift and not scary.
Sending love and care from the west coast.
Yet another internet stranger chiming in.
So sorry to hear about these developments, but I’m very glad to hear that you have attentive and available doctors, and the ability to contact them when you need their help.
Wishing you comfort until your procedures and in the start of 2014.
Like everyone, I wish for you pain free days and nights. Following your daily issues, and know that I am with you as you have the catheter placed. Hope for the best, experienced physician for the placement, and pain management team. Please let it be Anderson Cooper who knocks on your door and not Kathy whatshername:)
I wish there was something I could say or do. I think of you often.
Another random stranger…thank you for sharing your experiences, both good and bad. You are in our hearts and minds. I am so sorry that you (or anyone) have to go through this.
Thinking of you and sending you best wishes for all good things now and through 2014.
Thankyou for sharing, I, too, have fourth stage breast cancer. Thanyou.
Lots of love Lisa and best of everything for 2014
I love Anderson Cooper..not quite sure how he came up tonight……Oddly, I thought about you both the other night as needing to be working together in some way.. I hope to see him hugging you in a photo soon and I really do believe it will happen….will be seriously envious in a good way…..please give us all the details when you meet him…do not fall in love with him like I am, or maybe go ahead and do!!!! not in the way that causes difficulties in your marriage and family, but in a way that women can understand when their hearts are full of love for family and others as well…and want to help..he is a gift as you are, I believe he, like you, has a heart of gold and you both share the ability to get helpful information out to others which helps greatly. I wish you the best in the coming days, with less pain and more progress. Love to you.
Thinking about you.
Lisa,
I don’t even know what to say. I would gladly make your pain and troubles go away. Reading about what you are going through trivializes my current troubles. I am sending you hugs and sending my best wishes for some kind of success in your treatment.
Thank you for this update. Like everyone above, I’m hoping for pain relief, a clean scan and a comfortable catheter placement.
We’re but a phone call away. Thinking of you, always. xoxo
Am now hoping (not secretly, because I’m telling you and your readers) that someone gets this post to Anderson Cooper and he comes by your room at Sloan-Kettering because why not.
Seriously, though, as you know sending love. A check on you on Twitter is part of my morning routine: your beauty my morning sky and a hope that you will soon be in significantly less pain. Glad it’s better than the excruciating peak. xoxo
Despite everything you’re going through, you take the time to share it with us, for which I am immensely grateful–and I know I’m not alone. Your impact on those (virtually) around you, not to mention future generations, is immeasurable. Thank you, too, for including the link to the PleurX catheter; I’m curious about how that works.
While I likely won’t make it all the way to midnight on New Year’s Eve, I’ll be sending you much love.
Wow! That is a LOT of fluid! It stinks that you had so much severe pain for days to follow. The oxy plus Fentanyl patch are a potent combo and I hope you are getting continued relief. I do hope all goes well Tuesday and Thursday, and I extend warm wishes for a productive, successful new year.
*gives gentle hug*
I’ve been through the pleural effusion drainage twice with 1.5 liters being removed each time. The doctors marveled how I could even walk with all that fluid pressing on the lungs. Before they would do the clinical trial, they insisted I have the daily-draining catheter put in. The draining every day got to be, well, draining, but I got through it and the drugs from the clinical study dried up the fluid pretty quickly. As it is, though, Stanford doctors were reluctant to remove the PleurX catheter until I showed a couple weeks of very little drainage. All in all, the PleurX was in for three months. It’s been a year since I had it in and I’ve had no further issues with the fluid. So hang in there. I’ll particularly be thinking about you as you get the echo. My echo was extremely painful with all that pleural effusion going on. Tell them to use lots of gel and to be very gentle. You can get through this. We are all rooting for you. xox
Hi… Good info to know, thanks. Curious if there is any pain with the daily draining process.
Also what clinical trial drugs were you using? Love hearing which studies people are /were in.
I’m nervous because I can’t tolerate most adhesives so not sure how to deal with the catheter covering provided in the kit.
What his the removal process like? Do you need sedation for it as you do for implantation?
I had the echo already (last Thursday). It definitely was not easy to be on my left side during that. But at least it is over! Appreciate the info.
I’m sorry I didn’t see your reply to my comment until someone pointed it out to me.
There is some pain associated with the daily draining process, although it is minimal. It’s more the psychological pain of having to suction off the fluid each time and making sure everything is sterile. The system is very effective at getting the fluid out through the vacuum seal. I couldn’t believe how expensive the kits were, and insurance only paid for a small part.
I am on T-DM1 and Perjeta as a drug combo clinical trial because I am HER-2 positive (ER and PR negative). This combo has worked for me for over a year now, wonderful at least in my case.
Try the catheter covering in the kit first to see if you get a reaction; as I recall, the adhesive is latex-free. Did yours come with a video on how to use it? Mine did, and it was helpful. I’m sure they can provide you with an alternative adhesive if need be.
The removal process was much easier than the implantation. I was under general anesthesia for the implantation, but they were also inserting a port, so maybe that is why. For removal, they wiped the catheter area with an antiseptic and gave me a local numbing agent before removing it. The surgeon simply pulled on it and the whole thing came out in his office. It was very painless and such a relief.
I’m glad your echo is done already. I still remember how traumatic that was and it was over a year ago.
Take good care, Lisa. It’s always good to know that others have come through it and survived intact. xox
Thought about saying no more, but am glad you got a chuckle from the Anderson Cooper note….it was intended for that purpose….but I do think news media needs to be informed about the many women who are living with the various stages of breast cancer and the tremendous impact it has upon them, their family and their community. You are doing a very good job of informing and have reached many and provided valuable information and I hope you will continue to do so…shining light into darkness is always good. Best wishes forever.
Hi Lisa — as someone else said, I’m just an internet stranger who has been deeply touched by of your journey.
I too don’t have anything I can add other than to let you know, your words are reach me here in western Canada. I am in awe of your courage, and your commitment to sharing yoru story. Thank you.
Blessings and light on this next phase of your journey.
So sorry to hear the fluid keeps bothering you. Hope you will be out of pain. May the new year of 2014 bring you fewer hospital visits.
Sending you lots and lots of love.
You are always in my thoughts, Lisa.
Here’s to less pain soon and progress in the right direction.
xxx
Thinking of you Lisa, I’m amazed at how well you write and your sense of humor through all of this. xo
I am sorry you have been experiencing so much pain. I am glad to know that you have help and are getting such good care and that the pain medications are helping some. I greatly appreciate your continuing to share your story, you help so many of us in understanding our own. Sending you best wishes for comfort and hoping you get information that helps you make your decisions confidently.
Sorry to hear that you are having so much pain. Hopefully, you will get relief soon and that the next course of action will work for you.
I admire your ability to keep posting through this rough, painful experience. I hope Tuesday goes as smoothly as it possibly can.
In response to one of your comments so far…
I don’t know how PluerX will work with your situation, but it looks similar to the one my husband had in place in the lower abdomen after a groin dissection last year. The spot where the tubes (2 in his case) entered the body were sensitive and very bothersome. Actual draining is simple and painless, though. The removal was simple – the surgeon saw him in-office. He cut the stitches and pulled it out without my husband even flinching.
Oh, Lisa. I’m with you on the waiting and the news and the no news. I stumbled upon your site 7 months ago when my mom was diagnosed with stage IV nasopharyngeal cancer. She’s gone through chemo and radiation and as I type she is having her first post treatment PET scan. She’s in WI and I’m at work in IL…literally shaking with nerves and fighting the urge to throw up. She won’t know her results until Thursday. Here’s wishing you relief, hope, and peace of mind in the new year.
Joanna, your comment strikes me close to home. Not only did I care for my mother through cancer, but I am in Wisconsin, right on the Illinois border. I pray that you and your mother receive some hopeful news this week. Peace be with you.
Hi Lisa.
Another internet stranger here feeling compelled to write and let you know that I wish you all the best. I follow your tweets daily from the UK and I admire your eloquence and strength. I feel I know you, your writing is so honest and open. I hope these next few days go ok.
Louise
Thank u Lisa now i know the pain my mom is going throw
You are amazing. Hugs and much love to you
Lisa, you remain in my thoughts every day and prayers every night. May you receive some peace and relief in the coming days.
I’ve been dealing with pleural effusion this fall. After outpatient thoracentesis and two inpatient chest tubes that came out when I rolled over in bed, they put in a PleurX. That was early November. Since then I’ve progressed from draining daily to every four days.
I haven’t had the degree of pain you are dealing with. There is some pain following the procedure itself, but I was able to get off the strong pain meds within a few days. The draining itself isn’t at all painful, except at the very end when there’s no more fluid. You can clamp the tube off very quickly when that happens.
Yes, Glenda, you are right: the draining isn’t painful except at the end of the draining and it can be clamped quickly. I was down to draining it every four days, keeping a journal of the volume collected, before they were satisfied that the fluid level was staying low enough.
just sending you love and a hug – and healing dolphins to be with you xx
Wow Lisa. Look at all the love! I read this post a couple of days ago and was at a loss of words. I always want to say the “right thing”. I haven’t been on Twitter in a while myself so I know I’m missing out on a lot but I do try to read through the tweets on your website once in a while.
It’s New Years Eve Day I guess as I’m writing this. 2013 has been a rough one for a lot of us. I’m sorry you are ending it in so much pain. I wish I could take it all away.
Hoping you get some rest and comfort with those closest to you. Hugs.
Hi, Lisa. Just caught up on the last few days of your posts. You are in my heart; that’s all I can offer. Please know that many, many people keep you close. Love to you.
Sending you love, prayers, light & peace as you continue your journey
Lisa,
Just thinking about you and want you to know that you are always in my thoughts and prayers.
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