I confess I have putting off writing this post. After getting results of my scans I needed a few days to just sit with the information. I have also been dealing with some physical issues during my washout period (an interval where you must be chemo-free) before my clinical trial starts on October 28th.
I had CT scans of my chest, abdomen, and pelvis. I also had a bone scan of my body. I had bloodwork and an EKG and a urine test. These are all tests that need to be done before I can start the clinical trial and will be used as my baselines. Monitoring will happen at frequent points throughout my treatment. Bone scans and CT scans will be done every 8 weeks for the first 6 months and every 3 months thereafter for as long as I am on the protocol. I’ll write more about the trial and the drugs (fulvestrant and GDC-0032) when I get underway on the 28th. I had a lot of trouble with with the blood portion as I only have my right hand and forearm for blood. It took six needles in that area (which included two blown veins) to get all of the radioactive tracers in and blood out. I will be discussing the option of putting in a port at my next appointment.
So the short story is that results were not as I’d have hoped. I wanted it to be clear that the cancer was still confined to my bones and lymph nodes, even if it were in more bony locations. This, however, is not what it seems to be.
First I need to explain about the tests. I’m going to briefly try to explain why it’s a bit of apples and oranges to compare my test from August with my tests last week and why all of it is a bit jumbled. In August I had a PET scan. In oversimplified terms this test picks up on high activity metabolic areas. So, cancerous tumors (and also some false positive areas on occasion) “light up” because they have a high number of rapidly dividing cells. It measures activity. CT tests, on the other hand, are static. They are like x-rays. They just take a picture without regard to whether the nodule/lump/tumor etc. is malignant. It shows there is something there but can’t necessarily tell you what it is in terms of metastatic breast cancer. CTs are very precise visually. PETs are not necessarily so. CTs in my case can’t tell us for sure if a spot is malignant.
I now have a small spot showing up on my liver that wasn’t visible on the PET in August. So is it a new metastasis? Or is it a benign spot that just didn’t show up on the PET because it’s not cancer? Who knows. We will have to wait and see if it changes when we do the next scans 8 weeks after the trial start (10 weeks from now). There are also nodules in my lungs and pleura. These are potentially (likely) malignant but the ones in my lungs have not changed size in 8 weeks.
I think that’s as much detail as I need to go into. The worst spots in my bones are my T12 vertebrae and my first rib/clavicle area. There are many spots but those are the ones that cause the most pain.
Unfortunately and most significantly at the moment, the scans also showed that the small pleural effusion (fluid in the lining around the lungs) has grown.
So we have many question marks with a few new areas of concern. For now we watch and wait. The pleural effusion will need to be drained if it grows or continues to cause breathing problems. For now any physical exertion gives me trouble. I need rest throughout the day but am trying to conserve energy for activities with the kids.
None of this news changes anything about my planned start of the clinical trial. Whatever these spots are and wherever the metastases are, the drugs I will start in ten days have the best chance to keep the spots stable and eventually perhaps shrink them. Reports from the phase 1 trial participants showed that often there was a stability period of about 8 weeks before some achieved some tumor shrinkage. I have ten more days to go chemo-free before I begin. I am counting the days. That start day is the most important day I have. A few of us in the trial are starting on that day so hopefully I will get to meet some of the other participants. There are 60 nationally in this phase 2 trial, approximately ten people will be at my location. There is relief in knowing there is no placebo in this trial. I may not respond but it won’t be because I received a placebo.
I wish I had better news about the scans but I also am resigned. This is what this disease does. I must do the best I can given my daily symptoms. There are questions marks and only time will give us answers. I try to have as much normalcy as I can, which often just feels like sleepwalking through the days and a bit of play-acting. But it’s important.
I keep coming back to a few lines I wrote recently:
Cellular biology is King.
But paired to that fateful ruler
I shall be an argumentative, rebellious Queen.
Wring the most out of each day.
Find those bits of joy and beauty,
Make sure that what I’m doing isn’t waiting around to die.
For truly, that would be a waste.
I can’t do anything more to change what’s happening inside. I have a plan and I just need the days to go by to get started. My quality of life is suffering at the moment but I hope that this will change. It is a rollercoaster, one I have been strapped inside unwillingly. Some days are good, some days are not. These happen to be some of the icky ones, but as always, I press onward.
Every morning I say to myself:
Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be tough to do. Persevere.
Link to Twitter
Thank you for writing. The information you impart, while scary, goes a long way to help understand this disease in all its permutations. Having a plan is one of the best way to confront horrible situations, and I hope that this trial will bring a long time of better news for you.
I am sorry to hear that the scan results were disappointing. You took a lot of efforts to continue Afinitor treatment. It is heavy medication, I know.
I hope the new trial will relieve your symptoms. My pleural effusion minimized on hormonal therapy (Arimidex), though it took more than four months before this was visible on scans. I felt better much sooner. I hope the same for you!
Sending all of the love and prayers to you today.
I always know when less than desirable news is coming from you. I can just tell. Can feel it. Know by your recent tweets and how they are worded, infrequent, etc. Then the blog goes up and I hold my breath as I breath. Keep being that rebellious Queen, Lisa. Keep being you. Love you and think of you every single day.
Lisa,
Your writing keeps all of us present, in the moment, with you. You are a warrior writer, a strong person with cancer, a human being on this earth who shows all of us how to persevere. Thank you for your gift of words and collected thoughts.
I love your morning mantra: Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be tough to do. Persevere.
You are amazing, Lisa. My heart is with you and I send hugs and lots and lots of love–and of course laughter, when you need it.
Thank you, daily, for the reminders and your ability to share and show your strength, regardless. Will be thinking of you, and others, with every mile I am grateful to be able to walk
Oh, how I love the imagery of the rebellious Queen! Yes! Sending strength your way.
Hi Lisa,
This really is thoughtful and beautifully written. Thank you for explaining what’s happening – it truly helps.
Much love to you.
I keep vacillating between what I want to write (a fuck-off letter to cancer) and what I WILL write (a love-letter to you).
Dear Lisa,
I love you. I think of you many times throughout each day. I marvel at your strength but I am never, ever surprised by it. I send love to C, C, P and T often. I wish I could hug you (gently) right now.
Denise
Holding you in my heart, Lisa. Sending so much love.
Hugs, gentle hugs. Fresh cool clean air. More hugs.
Thinking of you in snowy Denver this morning, Lisa.
I’ve spent a lot of time in the hospital with a friend who’s been poked so many times her arms are shot. A port isn’t an option for her due to a clotting disorder, but she has been successful with IV lines behind her knees and also in the groin. Just wanted to pass that along. Hugs to you and your family, K.
I was diagnosed with metastatic Breast Cancer in September 2012, in my pelvis and skull. This August a fairly large (3.5 cm) lesion was spreading from the skull met into my brain, as well as 2 other tiny spots deep in the cerebellum. So I just went through some brain surgery, followed up with gamma knife surgery. I so appreciate your tweets and posts. It helps to know that someone else is going through this and able to articulate the grief, confusion, and horror of it all. I went through some months thinking that I might be one of those who have the chronic, but treatable disease. I’m beginning to understand what a monster this disease is, and the support (my gosh, just the words) of other in the same boat is very helpful. Thank you for putting it out there, Lisa!
Lisa:
Sending you hugs and my most powerful best wishes.
Thank you for posting when you can.
Hoping your news gets better during the clinical trail.
— Emily
I recently started following you and marvel at your ability to put your feelings into words. This news upsets me considerably. I too am stage IV. In the future, I will be looking for happier posts!
Informative and graceful as always. Wishing you a very quick ten days, followed by stability, improvement, quality of life.
I hold you in my heart always, my friend. Always.
xo
I’m sorry the news was not what you’d hoped for. I will hold you in my thoughts and think of you as you start the clinical trial. I am grateful that you continue to write to us and for us, during difficult times. I hope you can get some relief for your symptoms.
I’m sorry these are icky days for you, Lisa. I join so many people in sending you good vibes, positive energy, hope & hugs every day – pulling for our amazing argumentative, rebellious Queen & wishing that the next scans bring good news. I hope your symptoms ease & you’re able to enjoy your lovely family. Let’s go, clinical trial!
Thank you so much for sharing your life with us. xo
Lisa:
As always, I am awed by your willingness to talk so truthfully about what this really looks like. The impact and power of your words is profound. They have changed me. I, too, will be waiting for the 28th with you, for you. Regardless of the fact that we have never met, you matter to me.
xo
susan
Thinking of you always. Here for anything I can do.
Lisa, I am sorry your pain and shortness of breath are limiting your activities. I hope the symptoms can be managed for you. My pain clinic does a terrific job for me. I take a LOT of drugs, but my pain is minimal and I am able to stay awake all day (not so much in the evenings). As you say, your time with your children is paramount. I feel the same way. It was easier for me to give up my goal of returning to work once I realized I didn’t have enough energy for work and my daughter. Picking her was easy.
My thoughts are with you as you start the trial. I hope that you and the other participants will have excellent results.
Lisa, I can’t really know how difficult it is for you now, with the uncertainties about the scans, the increasing physical symptoms including the shortness of breath, and so on. I was checking my twitter feed obsessively to look for the update from you- it is generous of you to keep sharing what is happening and in the process educating us all. It also amazes me and will throughout the rest of my life that, even with all your are going through, you often find time to check in on me and my own treatment. I know you do this for many others. And you do create beauty every day. Sending you love and hugs, and waiting ‘with you’ till the 28th– and beyond. (I start brachytherapy on the 31st. What a week!)
One of my greatest sadnesses is that I can’t keep up quite the same way I used to with specific dates for my friends (birthdays, etc.). I will always do my best to keep up with your treatment schedule and check in on you.
Not the news any of us were hoping for, Lisa. But true to form, you’ve continued to educate and share. It’s especially moving and meaningful given the physical challenges you are facing. Sending you much love and hope the next ten days pass swiftly. xox
Oh, Lisa, I am holding you in my thoughts every day. Thank you for continuing to share with all of us. I went and found some of Siever’s posts and found them so moving as well. You are continuing his legacy and bringing such humanity and love to all. Wishing you peace and many good times with your family yet to be.
Not the post I wanted to see. But hope you’re ears were burning this morning. Met Sarah Oliver at a local show – so nice! I told her I learned of her bags from you and she said everyone at Sarah Oliver LOVES Lisa. She mentioned she often hears customers mention you – most, like me, have never met you but are touched and follow your amazing blog. Hang in —
Thinking of you every day with admiration and affection.
I hope your symptoms ease, and I keep a bright hope for good results from your clinical trial. xo
You are indeed that Rebellious Queen, Lisa. I too – like everyone here – had hoped you’d get better news. Since you didn’t, I’m shifting my hope to your clinical trial and for a quick end to your lung congestion. You deserve a miracle. It’s not something either of us believe in, but you deserve one anyway.
Was hoping to hear much better news. Hope that you soon start feeling better and that this trial will bring the result you are waiting for. Will be thinking of you on the 28th.
I’m so sorry. I understand there’s no “getting better,” but I hope you feel better soon. Thinking good thoughts for you.
Just wanted to add my voice to the chorus of well-wishers sending you love and good tidings and thanking you for your honest and beautiful words. xo
Oh Lisa – wishing and hoping so so much for you.xxxx
Sending cyberhugs.
No, no, no, no, no. My heart hurts for you, Lisa — for all of us with this stupid, stupid disease. I so wish your news was better. I hope the clinical trial works wonders. I’ll be following along closely. Thank you for the reminder to find (or make — so important!) beauty in each day. It’s not always an easy task, especially when you’re also battling cancer. Sending love.
Joining in in sending thanks, support, and gentle hugs…
Not the post anyone wanted to see, but I am grateful that you continue to find the strength to write and post. I hope you are able to catch your breath after the new treatment begins.
Thinking of you always,
I’m a day late to this post as I just got the e-mail notice. I’m here to support you and ride along on the roller coaster that this monstrous disease puts us on. Tears are rolling down my face know the latest scan information. I’m putting all my hopes in the trial and for improvement in your quality of life. May you find some time during the days to derive a bit of comfort any way you can. I’m with you all the way. I love you.
What an INCREDIBLE gift you give so many! Your way with words – thoughts, emotions, honesty – few can share. But many of us receive as blessings in our lives. Thank you for allowing us to …. share you. So many people are unable to ‘gift’ others with this – they want to keep it in, private, but to be able to let others help carry a tiny piece of the load – in turn helps many of us with our own burdens of the moment.
The news was not what your were wanting to hear – but…you are here now with us – and we are lifting you up – now – and I’m sending you the warmest of positive images and love. Wish I knew where I’d misplaced that damn magic wand, dear Queen. I’ll keep searching…
Much love –
Ashera –
I’m sorry that this is an icky time. I understand that there are good and bad days. I love what you wrote when you said “Every morning I say to myself:
Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be tough to do. Persevere.” I hope for glimmers of joy for you wherever you find them. Cyberhugs to you.
Thank you so much for the reminder to see the beauty in each day – your posts remind me to be constantly grateful for all I have – I am most grateful to you for giving me this!
Thank you so much for taking the time to write this update for us. Your incredibly open and
generous spirit is felt by so many of us. I wish you the very best on October 28. I carry thoughts of you in my heart everyday. I can’t think of any other words -Deepest Love, Highest Hope and that peace be in you, Lisa.
Just keeping up with your treatments, holding you in my thoughts, praying for your comfort and strength. It’s impossible to walk through campus and not think of you, our time together, the number of times I have a program in the Adams Auditorium and always begin by mentioning who you are and why it’s important that we’re in your building. I”ll write on your own email but there was just something in this latest post that motivated me to write. Thinking of you with love, Joel
Thank you again, your frankness is helpful , this blog must take some energy to write but it helps people now and will in the future
The most I can do is say, I’m here. I hope that the ten days between now and the 28th go quickly…. Sending love, an abundance of love….
AnneMarie
Lisa, your willingness to share what you’re going through so people can understand it and stay on the journey with you is astounding. Thank you. Thinking of you.
LIsa, your brave heart and well spoken words give reality to so many of us that do not understand what a person with cancer is feeling. Thank you for sharing your inner battle… Positive energy and thoughts are being sent from Rob and I that you new trial will bring you closer to beating this!!!
Lisa,
You give me strength. You give me courage when I can’t seem to find much within myself. Thank you for sharing yourself when it must be very hard. You make a difference in so many people’s lives. Thank you.
Sorry to hear the news isn’t better.
Holding you in the light.
Wish I had the ability to write like you. You perfectly articulate all the feelings I have. I have liver and bone mets. Currently on Gemzar. Have sent links of your posts to family, and friends cause you just explain things better then I can. Thank you and be well.
Lisa! Thank you for writing and for the ending to your post: Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be tough to do. Persevere. Thank you for the reminder and for persevering.
I’m so sorry to read about the spread of your cancer. I have stage 4 lung cancer, spread to bones and liver, so I guess I am in a similar boat. I also have 3 small children (son age 5, and 2-yr-old twin girls), which is the most heartbreaking part of all this. Best of luck to you, and I hope the clinical trial works wonders. That will be the next step for me, too.
You are one brave lady. I myself just recently went through treatment for breast cancer. I will be praying for you OX
Lisa press on. Brave? yes but your inner strength is so beautiful and I am grateful you share your journey with us – to share your thoughts, to open dialogue, to educate us. It’s important. I learn so much from you and it’s mostly how to dig deep and persevere. Thank you for that.
I would like to find words to lift you up but they fail me. I trust that the love you are surrounded by lifts you daily, that the smiles of your sweet children take you to places cancer will never touch and the trials ahead are a step towards healing.
Stay strong Lisa in mind and spirit so that your body may rest and be the perfect patient/subject for the medical trials you are waiting to begin. I am counting the days with you – 5 days . . . .
Just know, Lisa, that we are all love you and are rooting for you, hoping for the best and wishing you good thoughts as each day dawns. I just love your lines. They speak to so many. xo