When I was growing up and there was a particularly tough day my mom would use the expression, “Mama said there’d be days like this.”
Yesterday was one of those days.
My husband and I left the house before dawn. At about 8 AM I started my appointments. First was a physical exam with vitals taken and a review of symptoms. I met a new oncologist who was filling in while so many of the doctors were away (Friday of a holiday getaway week). We arranged this match because she is the Principal Investigator on a new clinical trial the team has been discussing as a good fit for me. As regular readers know, in my last post I explained that my cancer has progressed in some spots (stable in others) so we need to try to find something better now.
We reviewed my scan results and what she and my regular onocologist think we should do next. A slot in a new trial opened this week and it seems to be a reasonable next step to try another non-chemotherapy method. I’m going to save the details of that study for a later post but for those of you who know and understand the jargon, this one involves a Novartis drug called LEE-011 which is a CDK 4/6 inhibitor in combination with an anti-hormonal agent. This clinical trial is what I’m signing up for next.
The protocol for this drug is very challenging. It involves many trips to the city, especially in the first month where it will be once or twice a week, sometimes just for a blood draw. Some of those visits will be 8 hour sessions where blood is taken a few times to check drug levels in the blood before and after taking the pills. None of the blood draws can be done near my house since the conditions and testing all must be carefully controlled as part of the study. I’ll enumerate side effects and other details in a later post but this one looks to affect me more in daily functioning than I’ve had to deal with in the last few months. I’m definitely nervous.
We talked for a long time about the study. I had already gotten word from my oncologist about her own recommendation. I signed consent forms. I scheduled the necessary tests. They require a CT scan (I just did one, though it falls 2 days outside the testing window. We should be able to get an exemption for that so that I don’t need to redo it). I will need a PET scan, likely need a repeat bone scan, an echocardiogram (this drug can have cardiac side effects), an electrocardiogram, blood test, urine test and, (rats!) a liver biopsy. All of these must be completed in the next two weeks during my “washout period” (interval of time where you are not taking any chemotherapy agents and so you are starting with a clean slate to measure effects in a new clinical trial). Of course, the holidays are not an easy time to accomplish all of these.
I then went to get chest x-rays to monitor my pleural effusion (fluid in the sac around my lungs that makes breathing difficult). After those x-rays and fasting until almost noon I had 40 minutes to finally grab a quick bite. Then I went to the main hospital to meet with a pulmonary physician to decide what to do about the pleural effusion and find out how bad it actually is.
I had a full medical history and symptom assessment with a nurse and then met my new pulmonary doctor. He told me that my left lung is compressed to about 50% of its usual size from the fluid that is there. He estimated 1.5 liters of fluid have accumulated. He said it “layered” on x-ray which means it’s still flowing and therefore would be easier to extract. We decided to do a procedure called a thoracentesis to drain it. One of my morning blood tests that had to do with clotting had come back high, something that would mean we couldn’t do the test. We figured out it had been drawn from my port, which should never be done for clotting tests because they use an anti-clotting liquid called Heparin to flush the port each time and that would lead to inaccurate results.
Through a lab snafu it took 2.5 hours to get the new results rather than 40 minutes. By the time we finally had the all-clear to proceed it was about 5 PM. I still had barely eaten or had anything to drink. For the draining they sit you on a table with your feet dangling and have you bend over a stand for support. It is very much like having an epidural placed. They use local anesthetic to numb the skin and then stick a needle between your ribs, insert a catheter and vacuum extract the fluid (which should take about 10-15 minutes). The doctor got the catheter in, got a small sample of fluid going and…
My blood pressure plummeted. My heart rate dropped. I got hot and woozy and clammy. Yup, I passed out. They had to remove the drain and get me on oxygen and lay me down. I revived quickly, but we could not continue. So, I have the pain from the needle in my back but nothing to show for it. I will now have to go back on Christmas Eve to try again (fully hydrated and fed, hopefully this will be the key). I was obviously disappointed and emotional by this point. I had to go get the X-ray you need to confirm that no damage was done by the needle, and we made a train that got us home at 8 PM. It was a long exhausting day without too much to show for it in terms of relief.
It’s hard not to feel defeated on some of these long days when it just seems the mountain is so big to climb. Right now we are making a change to try to get better results in controlling cancer progression. I won’t be able to to travel for the holidays anyway, but now I will be spending time in hospitals rather than resting at home and taking a break. Cancer doesn’t give a damn about Christmas. Or families. Or anything that matters to me. But my doctors do. And they continue to show caring and concern and work so hard to try to make things better. Without that help and support this would be so much harder. Even when mistakes happen (and yesterday there were quite a few with blood draws and lab tests and so on), every doctor apologized. I definitely shed tears many times yesterday out of frustration, which doesn’t happen too often.
As I waited for my results I watched the office staff exchanging gifts, talking about holiday parties and Christmas cookies. One by one they packed up their belongings and turned out the desk lights. I was the last patient left in that department. That was hard. But I also know that I got to walk out of the hospital last night. I still got to go home and sleep in my own bed. And when I got home I made it just in time to hug my children and see Tristan’s artwork, all sparkly and smile-inducing. He asked me at bedtime why I couldn’t go on vacation with the rest of the family again this year. I explained to him that altitude makes it harder for me to breathe. The air is thin, and I would not feel well. I asked if he understood. “Yes, but I am still sad you can’t come.” “Me too, honey. Me too.”
I’m going to need to dig deep over the next 6 weeks. I’m going to need to ask for help with child care and logistics while I’m recovering from procedures and having so many trips to Sloan-Kettering. That’s not easy either. I find it very hard when I feel that I’ve not been strong enough, or that I’ve complained about the way a hard day has gone. I know it’s normal to need to just cry and complain and say to the cold night-time sky, “This isn’t fair. This isn’t how it is supposed to be.” Sometimes you just need to vent, though.
I need to be strong for the next few days and what they will bring. I want to make the holidays joyous for my family to the degree I can. These are the tasks that make me feel like me. The family shopping is done, the teachers’ gifts distributed, the tips for those who help during the year have been handed out, the holiday cards sent. These are the things that I know I could get a “pass” on. But they are the things I value. I will always try to show my gratitude to others.
Yes, Mama said there’d be days like this. But tomorrow is another day. And I don’t lose hope that it will be better.
Link to Twitter
The “right, comforting, understanding, supportive” words escape me, Lisa.
It’s not “fair.”
You are a beacon to the multitudes of caring individuals that follow your blog. You HAVE made a difference. You are a not-so-subtle reminder of what really matters.
Speaking for myself and, most probably, for many others. Would some financial help from those of us that can be welcome and useful? If so, please let me/us know how we can carry that out. A mailing address would work.
Love from Florida is winging its way north.
Vicki
When I saw your tweet yesterday about the delay in your blood work I was tempted to call the hospital and scream at somebody. If I felt that level of frustration, I can’t even begin to imagine yours. Your grace and perseverance is, as always, incredible and inspiring. Thank you. Love.
I love you.
Lisa,
I want you to know you can do this. You are in survival mode. I endured so much in a three week period two years ago. Time was not on my side not and cancer definitely was not!!! You need help from one or several people to take step in and assist routine of children and home responsibilities. I know much easier said than done. Sometimes it is someone you would not expect, angels are everywhere…..
Speak up to everyone, doctors, nurses telling them you need a break for a few minutes. Food and drink 🙂 and then back to it!!! Anxiety from all these things unknown tests and procedures can cause you to faint. I had to tell myself medical professionals do these things everyday… I don’t, I am scared, once I did that I could tell people more what I needed and it helped me through. I am her today still, sending you love and support. If I lived in your area, I would be at your doorstep…. Hug and remember one day at a time.
NS I don’t know your story but I am glad you are here today to post that. I don’t know if you are cancer-free or still enduring treatments etc, but…you sound like a strong person. Words escape me.
Sending love. XOXO
Sending thoughts and love and support– your strength is amazing and your frustration totally understandable!
I’m glad you have a supportive medical team. Wishing you easy holidays with lots of joy.
Lisa,
I live in NW CT and would be more than willing to come down and help out. Be it a ride to SK, just someone to sit in the waiting room or run errands for you.
My thoughts and well wishes continue on a daily basis.
Hello Lisa,
Your words have really resonated with me. Last year at this time I was in the middle of my own journey through cancer. I was so sick I was only able to get up for 20 minutes to sit with family on Christmas day and all of the usual Christmas traditions of our family, gifts, brunch, dinner were cancelled as I was too sick and of course not many people close to me were very merry to say the least. However, we do what we have to do and I see that in you. I know its tough and that is why we give thanks when we have a good day and reminds ourselves of those days when the tough ones come along. You have an amazing attitude which is so so important. If I might I would like to share some words that a friend sent to me when I was first diagnosed with Invasive Squamous Cell Carcinoma. Combined with so many other things her words really helped me and have proven to be true. Stay strong Lisa. Remember, it is okay to ask for and accept help at this time as you continue to focus on healing. I will pray for you everyday. 🙂
Ron this test – this stare down with the reaper gives you an understanding that other people don’t have. It will prove to you how strong you are – and you will be surprised – and life will never be the same cause it’s a gift to be given the knowledge of your own strength.
Remember when your first child was born how your heart went to a place you could never imagine until that moment of birth? This will show you a side of your inner self you never knew existed but upon which you can draw remarkable courage – without knowing it – you simply evolve through the terror and the worry and the uncertainty – and you get to a point of clarity you will never ever be at unless you have been tested like this.
You will get through this – you will be changed because of this and in the end your life will be better. Remember there is a lot of love surrounding you and you need to let it ALL IN cause you’ll find people are really amazing when the chips are down.
Bless you Lisa. 🙂
I was shedding tears while reading this. It brought back memories of some of my terrible, horrible, bad days. Wish I were closer so I could help.
Love, JOANN
Goodness. Hugs to you all. I know that if I lived nearby, or if I had a friend who lived near me who needed help with childcare and logistics during a difficult time, I would be honored to help. This disease, as with any catastrophe, can leave the people around the affected person or family feeling helpless, and the opportunity to help with childcare, etc., may be the best gift they can give you right now. Also, your grace as you describe your treatments, emotions, and concerns is incredible, and a gift to us all.
Thinking of you and and sending love. The Sweeneys
Lisa- your blogs remind the rest of us what’s important.
Sending love
Judy
From Italy, a huge hug to you and your family. You are a brave human being and I admire you a lot.
I can not even imagine such a rigorous day with so many different doctors and procedures. What amazing stamina and energy you have! This was beyond a bad day and your frustration is felt deeply. I was wondering if any future days similar to this, if you can just stay over at the hospital and have a bed to go back to rest in between. Anything, to make it a little easier for you. I don’t even think a person who doesn’t have metastatic breast cancer could hold up as well as you did. Thank you as always for sharing your day and I hope that your next day at the hospital goes much better with ZERO mistakes. xo
Vent and cry – by all means, you have every right to! You are an unbelievablely brave and courageous woman with a beautiful soul. I am always so impacted and touched by your words and thoughts. Again, much love and hugs to you and your family. ~Dee Anne
I hope I have your strength in the future.
Hard to imagine the size of the steps you have to take in this holiday season.
I am sorry to hear you passed out during the fluid draining. 1.5 litres is quite a lot, I hope the draining will be successful on Christmas Eve. Try to avoid coughing. The later you cough, the longer they drain. I had 1 l of fluid four years ago and they drained 750 cc. It was an amazing relief!
I hope you will write more about your Lee011 trial. We have such a trial in the Netherlands, but it is a phase I study only. I thought you may be in a different study (phase II or III), but admit I was too lazy to look it up.
Wish you happy holidays and a lovely time with your loved ones.
Hi… This will be a phase 1b trial. Thanks!
cannot even begin to imagine how tough this must be…
said it before…
you are a stellar human being Lisa
touching so many with your story and incredible strength of character…
thinking of you wishing you strength for the coming weeks
Lisa , I have been following your blog and Twitter for a few months. I don’t have cancer but serious health issues as well so I can relate to your experiences . I admire you and would like you to know that you help me every day. Knowing that someone else has to struggle with illness but still finds reasons to smile motivates me So thank you and I will keep reading . Hope your new trial works.
Think of you everyday, Lisa. Sending you much love, strength and hope today and everyday! xoxo
It’s a hard time, Lisa, that’s for sure. Yesterday, especially, and what’s coming ahead. To me, every time you push forward despite the physical and emotional challenges, it’s a message that shouts out, “I love my family and I will do everything to be with them for more years.”
I’m just back from Christmas shopping for my chemo team. I want to thank them next week for, well, for everything….. My blood counts are borderline for the first time (post-radiation now, different territory), meaning, borderline for proceeding with scheduled pre-meds and carbotaxol chemo on Monday. We won’t know until labs Monday morning if the chemo #5 can proceed. I hope it can; if so I will be in 8 hours of chemo Monday, get a Neulasta shot Christmas Eve, and do my best to get through the worst days for side effects which will be Christmas, the 26th and the 27th.
I’m overwhelmed, thinking of how many of us have to push hard through the holidays, and in another sense, overwhelmed also by the loving care of our doctors, nurses, aides, techs, phlebotomists, etc.
We all pull each other through.
Sometimes it is the bad days that make us defiant and say, ‘No!’ “This isn’t fair. This isn’t how it is supposed to be.” which enables us to push through to the next challenge. I hope your new clinical trial will soon give you some relief.
Be well,
Vicki
Thinking of you and very much hoping for things to go very well for you in the coming weeks. You are amazing and an inspiration. Wishing you the best of luck!
Lisa, you are so strong and generous. To take the time to keep up with this blog, to detail your experiences, to be so honest and open with your thoughts and feelings – all of this is so important, but oh so generous. There are others going through what you are going through, or have loved ones who are, or who may be there one day – what you share educates, informs, guides, comforts, and keeps the conversation for research going. And I also applaud your strength in fighting, in putting yourself through these clinical trials, and holding on to what is important in your life. I love that you write about shopping & teachers’ gifts, the everyday and “mundane” activities that remain important to you. And that is life: the everyday, the simple pleasures, even the chores that keep our families running smoothly. That is life. I wish you well. Hope is a good thing. And your generous sharing is a very very very good thing. Thank you.
Oh Lisa – if any comfort comes from company – maybe this will help…..my mom’s first thorancetesis was a joke! Her “top notch” oncologist at MD Anderson didn’t even diagnose her with it and said she must have a cold and prescribed cough medicine for her! WT?
We had never even heard of pleural effusion before! No one ever mentioned it – even though she had trouble breathing for a long time!?
We ended up going to the MD Anderson emergency room that very night! Of course her X-ray revealed how bad it was! What a nightmare to make another trip out to do another thing!
They drained it and she did not pass out but almost did – she said it was like being shot by a gun!!!! That’s the only thing she could describe it as. SO painful. I am so sorry.
If it keeps filling after your Xmas Eve procedure – consider the “at home” drain kit – it actually helped her lung (space between) stop filling as much and helped create more of a seal.
I’m assuming they are doing the liver biopsy to see if it’s the same strain of your primary tumor? Seems like too much!???? I’m sure it’s for the study though…..uggggg.
I’m sure you already have – and I know they sort of frown on it – but see what pain meds you can take before the thorancentisis! Too ouchy!!!
I really really care about you. Will rack my brain at any point of things that we have learned along the way that would benefit you.
Sandy Brockman
I’m so very sorry that you are going through this and that yesterday was such a terrible day. I hope that you can have pain meds before you have to do that procedure again.
I’m so glad you came home to your son’s glittery artwork. Thank God for Love!
Sorry to hear about the rough time you are going through, Lisa. Your determination to find something good in each day is inspiring. I hope you can find some joy over the holiday season.
Lisa I am so sorry you are having such a time of it. Thank you for being so open. I hope the LEE-011 works for you. You are in my thoughts and prayers. Mama said there’d be days like this…here’s to better tomorrows. I write this with blessings of love and light to you. xoxo- Susan
Thinking of you Lisa and so happy and willing ton have Tristan here to play anytime (and eat pizza)! :). Please let me know when I can help!
Lisa, You are enduring a ton of difficult medical treatments most people will never face with a courage beyond belief. I hope the right one is near and will be next and the intrusion it makes into your life will be so worthwhile and give you the successful results you deserve. You remain open to the possibilities, discount the discomforts and hardships and keep moving forward…there are so many of us with you in your quest….we admire your strength and are with you if you need help in moments of doubt or discomfort. Love , caring and strength are sent to you daily. If you ever put out a note asking us to show up to help you there would be thousands on your doorstep and I would be one of them.
Hi Lisa,
This is the first time I’m reading, and I’m stunned and so sad to read you have cancer. And I am in awe of your bravery and strength. I am going to route for you every day.
xo, Kathy (Miller) from Cornell
Lisa, I’m so sorry that your day was the day from hell. Hopefully, the next day was better. Love to you,
Beth
Just love, Lisa. Just sending lots and lots of love.
I read your post yesterday Lisa and didn’t even have words. I even shared some of your experience with my husband (who has had his lung drained before). I never do that. Words are still escaping me. I am so sorry that you have to spend Christmas Eve that way, and that you can’t go on the family vacation. Having the kids gone might give you some rest, but it is so heartbreaking to know you can’t go.
Even this morning words are escaping me.
Also to all of the other readers who are commenting here who are going through their own journeys with cancer, my heart goes out to you all too. Everyone moves down their own road in their own way. I hope you all have good support close by while you go down those roads.
Peace,
Rebecca
Lisa — you’re in my thoughts every day. I just want you to remember that it’s ok to feel the need to shake your fist at the sky every now and then … It’s ok to cry, it’s ok to feel vulnerable. And, it’s ok to ask for help. That’s been a hard lesson for me to learn on my cancer journey — in fact, I’m still learning it. So, ask for help when you need it and watch as people respond with love. Take care.
Leah
Lisa, I’m so sorry to hear about your recent medical day from hell. I want to thank you for your amazing courage in the face of adversity. It’s because of people like you who choose to participate in early-stage clinical trials that we have success stories like Gleevec. I’m keeping my fingers crossed that the LEE-011 trial will exceed all your and your treatment team’s expectations!
Merry Christmas to you and your family.
Maureen
I retired 3 years ago. I was a Pulmonary Nurse Care Manager. My role was to facilitate and help my patients manage their care, in every avenue, home, clinic, hospital. I was paid for by the hospital no cost to the patient. I would try to be with my patients for most procedures, manage their labs, so no foul ups occurred, manage all tests, organize care with all physicians. I was the point person for my patients, that someone, who ‘fixed’ and prevented the glitches. Loved my job, used every skill and ounce of perseverance I had. Sounds like you could use someone like me. Wish I lived near you.
Best to you.
I have just spent the last 5 hours glued to your posts. I happened upon them with a google question of : “what not to say to someone dealing with stage4 cancer ” and just couldn’t stop. My stage 4 prostate cancer husband and I will benefit from your writings in the year to come for us. It’s been exhausting as you well know. I am amazed regularly at the stupidity in the non-cancer world and find myself wanting to protect him and our 5 children like something awful . Thank you and you and yours are in my thoughts. -Christine
So sorry for the horrible day you had, but glad you were able to go home to your family. Wishing you only the best as you start the new trial.
Lisa, I am so sorry to read your news. I am writing to you with no expectation of hearing from you as I know your hands are very full. I am a physician assistant who lives in Manhattan. I work 3 days a week so if you need help getting to or from MSKCC from CT, I would be glad to help in any way. Just say the word. Am keeping you and your loved ones in my thoughts and prayers.
I love this read