When you have surgery to remove a cancerous mass, or several, afterwards you don’t really know much until about a week later, when the path report comes back. It’s weird and strange and confusing, because the surgeon was just mucking around IN your body and all, but in fact it’s true.
After the surgery, the surgeon comes out to the waiting room and tells your family how the surgery went. She tells them why it took longer than expected (in my case, she was stitching up the blood vessels and lymph vessels carefully, so carefully, to help avoid lymphedema, and the resident, who is in plastics, was tidying up, helping to avoid the dreaded “dog ear” left behind by mastectomies without reconstruction), what they saw or felt (in my case, lymph node after lymph node that was lumpy, bumpy, or otherwise suspicious for cancer, and which they pulled as if they were swollen grapes), and what tissue was taken (the whole pad of lymph nodes, and more nodes besides). And then you wait.
First the family waits for the patient to wake up, and then the patient waits for the world to return to normal (oh! anesthesia!) and then they all go home and wait for the results.
Which brings us to today. We headed to the cancer center yesterday morning to have the softball-sized lump of fluid dispersed. Now, I realize this is way too much TMI for the bloggy world, but I swore I’d be honest and help lift the veil around cancer treatment, so get this — to drain the fluid, the surgeon sticks a GIANT NEEDLE directly into the still-healing scar and just pulls the fluid out. No anesthesia, no numbing, no freakin’ ice involved — just a pump, essentially, because, in her words “this won’t hurt; it’s all numb in that area.” Um, NO. But it wasn’t painful, just a little stinging where it pulled on my stitch. It was weird as anything, but OH, do I feel better! (As per usual, I’m on the ugly side of the side effects, and I’ll have to go back for this at least once and maybe twice again this week. Annoying, but really just from a schedule perspective. I’m trying to work during preschool, not fill the time with hospital visits!)
Anywho. As C helped me sit up (Have you ever tried to sit up without using your right arm/shoulder, which aggravates your lymphedema on the right side, or your left arm/shoulder, which could cause lympedema on the left side? Without falling off the exam table? Awkward!), the surgeon sat down. (Why isn’t she leaving? I mean, I adore her and all, especially after the incredible patience she had stitching up all those vessels so nicely, but?)
The path report came back.
Oh. I wasn’t prepared for this.
Sure, we were going to ask about it, as active participants in my care, but we didn’t expect it to be back and her to be prepared to discuss it until Thursday. At least. I’m still in my gown, gaping at the front awkwardly, and I’d really like to put my own clothes back on now, thankyouverymuch. But we listen.
And here’s the deal. It’s bad news and good news and weirdness and relief and fear, all wrapped up together. I’m not sure I can convey it all here, but I’ve been thinking of nothing else since this moment and I need to tell you. Also? It’s 4 a.m. If I don’t deal with this now, I’m just going to anguish about it, and there’s no going back to sleep at this point, so here goes.
Thirteen positive nodes.
The pathologist studied the tissue that the surgeon removed, and the student or nurses put in carefully separated vials in the operating room, and he studied it under the microscope or whatever amazing instrumentation they use in that lab now. The tissue contained 28 lymph nodes (that number isn’t important — it’s essentially all of the ones under my arm and a good number besides). Thirteen were filled with cancer. Adenocarcinoma, said the path report, which I learned means cancer in a glandular tissue like lymph nodes.
I don’t know if you remember this, but waybackwhen, my oncologist said that there would likely be no chemo, and there would only be radiation if there were at least four positive nodes, which she didn’t expect, although six showed up on the PET scan. So we’ve been thinking that I start radiation in six weeks, after the scar heals and I lead a lunch-and-learn at a conference and co-lead the proposal writing workshop and turn in the first six chapters of my book and the kids finish school and summer begins and I can rest on the hammock if I need to, but really it’s no big deal.
Thirteen positive nodes changes all that.
We haven’t yet met with my medical oncologist, but my surgeon has, and it looks like there may be chemo indeed in my future. My near future. Everything on the schedule is on hold. The lunch-and-learn. The workshop. The seminar at JPL. Preschool. BlogHer. The kids’ school in the Fall. It’s all up in the air now, as we see how much and how long the chemo will run, and how intense it will be. We’ll have to have a port put in (and you simply must click that link; Frances is amazing and brave and beautiful) and then start treatment. But, again, we don’t know any of that yet for sure. We’ll meet with her next week. For now, we wait.
There’s a twist.
Are you wondering what the good news might be?
As it turns out, the surgical oncologist and medical oncologist are rethinking not just treatment, but diagnosis. There’s a theory, which I’ll explain tomorrow, that suggests that this might not actually be metastasis of the inflammatory breast cancer, but in fact a whole new instance of (much more typical and treatable) invasive breast cancer.
Which means that we totally did the right thing by having surgery, and that there is hope, much more hope than if this were a metastasis. Which means I’ve survived the two-year mark in which inflammatory breast cancer is most likely to recur. Which means …
Oh, this is good news indeed.
And although I’m sore under the arm and tire easily, I feel lighter without the cancer in my body this week. I am more energetic than last week, and not as sluggish as I was when I had to drag that cancer around and meet its energy needs as well.
I am hopeful.
If you read nothing else, read this: I am hopeful.
So we’ll be hopeful right along with you, offering all our virtual hands to hold along the way as you fight this, fight it hard, and wishing we were close enough for more practical help like grocery shopping and babysitting.
Hopeful with you. But a third type of breast cancer in 3 years? Oi, Susan.
Oh, Susan. Wow. I never thought I’d be thinking a different cancer was good news! Sending lots of hugs and love to you and your family as you wrap your heads around all the implications and consequences, and holding on tight to that hope!
Tears and hugs and words that won’t come.
Talk about emotional whiplash! Boo for the bad nodes but yay for the prospect of a new-and-improved diagnosis. Cheers for feeling lighter and more energetic. And brava, as always, for the awesome attitude that will doubtless help you beat this beast back yet again.
Hopeful right along with you, and cheering you on.
Susan, you are pure class.
Thanks SO much for the full update. You are so informed and articulate, and the information you share has been and will be, I am sure, very helpful to MANY others.
While all the positive nodes are a bummer, you are SO right that assuming this is a new cancer, more treatable than inflammatory, you are actually better off.
I am so glad that your PT suggested you have this looked into. That may have been critical for the success in beating this.
What a trooper you are!
My fervent wishes for your successful, and not too demanding, treatment. Perhaps chemo this time around will not be so bad. I had six months of chemo (adriamycin and taxol with herceptin) and got through fine thanks to some of the new drugs (Emend in particular). But either way, this too shall pass.
Hope you can keep at least some of your great plans, but make yourself your first priority, and your family next. Your job now is to get through this.
And then I want you to write a book about all this.
Joan in PA
Wow. How much more is one person expected to take! I am staying hopeful for you as well but feeling overwhelmed at not only the treatment plan but everything in your life that needs to be handled through all this….you are very strong; a true inspiration!
Susan, I’m in Buenos Aires —and yet reading this I feel as if I’m in the room with you and your surgeon. Thank u for letting us in–and for continuing to inspire no matter where your journey takes you—
Well, cancer never disappoints. Nothing takes you on that emotional roller coaster quite like a cancer diagnosis. On the brink of tears, but not sure if they’re tears of fear or hope. I’m so glad you feel better and I’m so glad there’s hope. Just wanted to remind you that the offer to talk to my colleagues stand. Let me know if you’d like to talk to one of them.
13 is my lucky number, so I’m hopeful too. And inspired. You are a class act, lady.
I am too. xoxo
you are amazing.
I’m hopeful, too! And doing everything I can to help find a CURE. And I’m praying, praying, praying for you!
I love you and think about you constantly. You’re determination and strength is awe inspiring, Susan.
All the best. XO
My thoughts are with you and your family. You are such an inspiration.
I don’t know if I ever commented before but good luck. That is good news that it might not be metastases. I hope that things go well for you. I’ll keep checking in on you.
i am sitting here supervising a standardized exam for a room full of international students. none of them have noticed i’m crying.
hope. such hope.
i am sorry about the possibility of chemo, about the on-holdness of your life, again. the lunch n learn, all those good things. that’s hard.
yet i am so so thrilled at the hope – for your life – that the news represents too. i hope. i hope so much.
sending you love.
I’m clinging onto that good news for you!
You are an amazing woman for being so instructive about all of this while you are going through it. Thinking of you and your family.
A different cancer, again? Oy vey Susan. How strange to say that it is good news, but it is so much better than metastasis. And for the record, I don’t think any of this was TMI. I think it’s good for us all to hear it, as much as for you to get it all out. xo
Hope is an awesome four letter word and being full of it is even awesomer.
I am hopeful for you, too.
You truly do amaze me.
I think in your shoes I would crumble (and maybe you do from time to time).
I imagine one of the hardest parts is not knowing what the future holds.
How much chemo? For how long? A new type of cancer? A metastasis?
The one thing I hope you know wholeheartedly is that we your bloggy buddies are behind you, beside you, and right there with you in prayer, in spirit, in service, and most of all…
In hope for you.
Wowzee. A huge amount to take in and process for you and your family. But as you said, hope, there is hope, very good hope.
It sucks that your plans are put on hold and that chemo looms in your future. But I’m so glad that there is such hope.
Hopeful with you. Thankful to you for all that you share here. And… damn, woman. Wow.
Hopeful with you and sending you positive energy from Toronto, ON
Hang on to that hope with everything you have. Let it float over all of the hardships. You are amazing, by the way.
I will be carrying hope for you, too.
I am hopeful too.
But my sweet, wonderful, incredibly thorough and hard working friend – you can stop now. Three different breast cancers are quite enough. I know you never do anything halfway, but this is a little too thorough 😉
Holding on to hope here and letting it take wing. Sending good thoughts and prayers your way.
I like what Amy said, “13” is her lucky number. That was my Father in Law’s lucky number too. A long story short, he was given 6 months to live due to heart failure. With a heart transplant (the 13th ever performed back in the early 80’s), he lived over 20 YEARS!
I raise up my arms to you too. See my scars? Thirteen of thirteen positive nodes on the right and 9 of 9 positive on the left. It will be 3 years for me in August and looking at me (with my arms down at least!) you would never know. There is indeed hope for you! You could say less than half of your nodes were positive 🙂
As a fellow BCer, can I also just say, seromas suck! I was Seroma Queen for a very long time but how amazing those aspirations feel!
Well, just wanted to leave a note. One day at a time! I’m thinking of you.
You are the bravest person I have ever known.
Wow all around. Putting off the present to help prepare a future is worthwhile. But it sucks.
Sending positive thoughts from CA. Three different types of cancer? Wow – I hope that the third time is a charm, and you will kick it out for good.
Kick it to the moon. And definitely check out the carousel on the mall. But don’t say I didn’t warn you…it’s fast! At least for mere mortals like me. Other people (including my kids) seem to do just fine on the thing.
Rarely comment, but must agree with Joan: You are indeed pure class.
I am wishing you the best of luck in this new journey. Obviously there are quite a lot of us hoping along with you…
P.S. A DCIS survivor, I have joined the Army of Women — and my decision was much more related to your experience with cancer than my own. You know, you should be very proud of what you have accomplished here.
I’m glad you’re hopeful, I know you’re amazing.
There never is just good news nor is there ever just bad news. Interesting if your body has started a new cancer. That might just be the best thing because it can be treated and you can get the move on again.
I know you don’t want this, but I want you to know that you MUST rest now. Screw JPL, NASA, etc. Take time for YOU. Get the rest, get the recovery, you will be back to deal with the other parts of life later. Deal with YOU and your family right now!
Beautiful. You are hopeful. I am hopeful for you.
Sounds like the best possible report you could have gotten, Susan.
“There’s a theory, which I’ll explain tomorrow, that suggests that this might not actually be metastasis of the inflammatory breast cancer, but in fact a whole new instance of (much more typical and treatable) invasive breast cancer. Which means that we totally did the right thing by having surgery, and that there is hope, much more hope than if this were a metastasis.”
I totally like the sounds of that! 🙂
Keep forging ahead. Those of us you’ve never met nor talked to before are going to walk with you… in prayer, love, internet friendship.
P.S. By “best possible report you could have gotten” I mean… if it had to be cancer, this is the “best one” it could be. Did not intend to be flip about it. I apologize if I came across that way. 😦
All smiles for the thing with feathers!
Hope is wonderful!!
I guess it’s going to be a little awkward carrying my Big Daddy Fryer with us to chemo for the fried cherry pies but I’m guessing there will be a sufficient number of outlets nearby.
My schedule is clear. Just tell me when.
Hope. 🙂 (totally unrelated, but I got the @twiss update yesterday and how way cool is that?…well I so didn’t get up at 5am to see it, but I could have! 😉 )
HOLY MOLY. Susan, you are so inspiring to me. First and foremost, I appreciate your frankness about everything–I really do. Your honesty is so helpful in more ways than I can explain.
And YES–to be hopeful–what great news!!
We are all hopeful, always, and so appreciative of your clear explanations about everything and your positive outlook on a situation that is just not what anyone would wish for anyone, ever. You are INCREDIBLE. And I promise I’ll come by next week and give you gentle hugs.
Hopeful for, and with you, too!
And we’re hopeful with you, and including you and yours in our thoughts and prayers, and wishing we could bring over some chocolate chip cookies.
You’re hopeful, and we’re hopeful, too.
Susan, you continue to amaze me with your positive spirit, strength and outlook on life. I remember when I got my path report after my bilateral mastectomy and fond out I had 11/13 noses positive after having endured neo-adjuvant chemo. I remember the surgeon and my oncologist telling me to focus on the positive fact that there was no tumor left in the breast, just some pesky cells left behind in the nodes that would surely go away with surgery and radiation. I also remember them telling me that 2 of the nodes were negative and that the cancer had not reached them.
So looking at the bright side, you have over 53% of nodes that were negative for cancer. That means that this cancer was found very early and that it wasn’t able to move beyond just a little cluster in your other nodes. Other nodes which, btw, were removed at surgery and are now GONE. Radiation and chemo will keep this cancer away and prevent it from coming back.
You are strong and can and WILL beat this.
Sending you much love and hugs.
Hopeful. YES – I am hopeful for you and will be cheering from alongside you on this side of my screen.
Sending all the love and hugs I can (new reader, but will stick around!!).
Hey there —I swear you are the only one that can make me think that this new bad node news is good news since it is a more treatable beatable cancer but well—it is what it is. Now on to the treat it and beat it part.
Maybe a better chemo experience is to be in your future– three kinds of cancer should get some kind of bye in the this part has to suck too department. 😉 Your boys will still be giving their mom some hand me downs in a couple years–remember this is what I told you is gonna happen.
My buddy with IBC /mets is still getting her treatment(yes every three weeks it totally sucks for three days straight) but she is getting remarkably close to earning her ninth year vanilla milk shake!! I will be drinking to her/with her and a few others in your honor.Hugs!!!!
Hope is a beautiful, life-affirming thing, Susan. Sending you love and hope and strength.
So hopeful for you!! SO. Very. Hopeful!!
I’ve been following your for a long, long time. I’m 65 years old and you know what? If I could make you be cancer free, I’m pretty sure I would trade places with you. Because I’ve had such a good life and my kids are grown and I have even had the good fortune to have met my great-granddaughter. My life is SO complete. I want yours to be complete too.
Wow! Sending you positive thoughts as you embark upon these next few weeks as both a survivor and a combatant of a new enemy… You can do it!
I’m hopeful too. You’re a fighter. Stay strong, and we’re behind you. Wish I could be more practical. I’ll keep you in my prayers.
Hope is a VERY powerful drug, Susan my dear. I will carry an extra supply around for you in my bag. Call me if you need some extra.
Wow. You really are incredibly inspiring. Thanks for sharing your hope with us.
And I am in tears. Tears of HOPE (never knew there were such things, but there you go).
oh goodness, I could barely take a breath while reading that until you got to the good part. And it is so good.
Sending you much strength to deal with whatever treatment they send your way.
Hope is the energy we need to keep moving forward. And you…you are the one giving it to us.
I’m just on the other side of the beltway. Can be there any time.
Hope is good. Hang on to it in the tough days ahead.
Thanks for stopping by my blog:) I will keep checking on you and sending positive energy in the days to come.
Then we shall be hopeful too.
I hanging on to hope for you, and hope for another close friend who was hit with oh so bad news today also. Hope is an amazing thing, even when it is hard.
And you will make it to BlogHer, if I have to drive you up, and drive you back for treatment, YOU WILL MAKE IT TO BLOGHER.
If you have hope, I have hope for the JPL seminar, preschool, BlogHer, and all the things between and after! And I’m with Jodi…We will do whatever it takes so you can join us at BlogHer this summer!
Susan, I think you are the strongest, most amazing person I know. I’m hopeful for and with you!
You never cease to amaze me. Hoping with you and for you.
I’ve got lots of hope for you! No matter what the treatment is, I’m confident you’re strong enough for it. And if there’s anything you need, lean on all of us and we’ll give you all the support we can!
What a rollercoaster. Does that mean that you have had no less than 3 types of breast cancer in the past two years? Oh my goodness, woman – what are the odds? And if you can beat those odds, well, we know that you can beat any odds. I’m sorry that you may have to have chemo again – especially if it means I won’t meet you at Blogher – but that silver lining? More like gold.
You are hopeful. And brave. And beautiful.
Sending strength and patience and resolve (and hope) to you.
I’ve tried to email you, but can’t get it to work. You don’t know me, but I’ve prayed for you and walked the 3-Day wearing your name on a ribbon. I walk for far too many people. It’s time for us to put a stop to breast cancer.
I lost my Mom in 2007, and I’d do just about anything to stop this disease. Right now, I’m doing the KFC / Komen campaign with BlogHer. For every comment left on the blog posts in this campaign, BlogHer will donate $1 to Komen.
I know $1 may not seem like a lot, but all those dollars put together add up. If you’d like to help spread the word, you can find out more at http://www.blogher.com/kfc-susan-g-komen?Reviewer7
Team Tiara Captain
DFW Breast Cancer 3-Day 2006-2010
Hope is an incredibly powerful thing – the fact that you have more of it at 4am than most people do anytime during the day says quite a bit.
Again, I’m in the long line of people wishing you the best…
Is it ok to cry? Because the way you write about it all…the suspense, the build up, and then the crest of good news…it’s really really good. And you made me cry. And I NEVER cry in public. I just don’t – which is also why I didn’t get very far in my acting classes, but that’s a whole different story. Maybe one I’ll recount for you as entertainment when you are getting chemo.
Also – I make really good rubber glove blow-up animals. Just sayin.
I’m so happy/sad/moved by all this but mostly…hopeful.
I can only hope another young mother who has cancer has stumbled upon this post. I know it would lift her as well.
I’m polishing my armor my friend. Getting ready for the battle.
Such good news. Thank you for sharing and it was most definitely NOT TMI!
Susan, you don’t know me. I am a mom in the DC area (originally from southern Europe) and stumbled upon your blog accidentally. All I want to say is that you are an inspiration! You are so brave and smart and strong! I’m behind you, even if anonymously. I know deep down that you have all it takes to beat this.
So much more than hopeful…hope-filling, wisdom-sharing, odds-defying and courage-cultivating.
You are a fighter and a real inspiration.
I never thought I’d be so excited to hear you have a *new* cancer! (((hugs)))
I hereby volunteer to serve as preschool taxi next year. I mean it. I love who you are, Susan. I love what you’ve done with this crappy hand you’ve been given. Most of all, I love the fact that I’m going to see what you do long into the future. Miss Emily Dickinson says it so well:
Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
So this is what happens when an overachiever gets cancer? Three different kinds?!
You know you have an army of women behind you who will watch, drive, entertain and feed your kids. And make you laugh and pass you tissues. And will bring a physician with her to BlogHer for your personal use. (Ok, that’s me.)
Thank you for sharing your hope with us.
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