This is the last photo I took before I found out I have metastatic breast cancer.
This photo was taken in the final days of September when I went to visit my surgical oncologist for my annual checkup.
I’m wearing a hospital gown with those boots. The contrast of the gown and boots made me laugh.
I snapped the photo.
The actual diagnosis came one year ago today.
It came on the first day of Breast Cancer Awareness Month (a month which has always driven me batty).
It came more than five years after I finished treatment for stage II breast cancer (no, five years without a recurrence does not mean you’re cured, let’s just bust that myth right now. Hormone receptor positive breast cancer in particular can return after 5, 10, 15 years or more).
……
I went to my surgical oncologist annually so she could check on how I was doing after she surgically removed both breasts in January of 2007. After the active post-surgery period, the visits consisted mainly of a physical exam and a talk about how I was doing and what post-chemo treatments I was on.
At this particular visit I complained of some rib pain in a place where I’d broken two ribs in a fall a few years prior. Nothing else was bothering me that day. While I was changing into my street clothes she phoned downstairs to my medical oncologist who said he would put orders in to repeat my bloodwork a month early. It was a test he did every six months at that point.
None of us were worried.
Flash forward a few days to Monday, October 1, 2012.
One of my medical oncologists (I have two, one is a general hematologist/oncologist and one is a breast oncologist) walks into the room with a concerned look on his face and says hello and goes straight to the computer. He starts punching things in to log into the system.
I ask him, “How are you?” “Not so good,” he says. I am sure he’s talking about himself, his family, his favorite sports team perhaps.
“Your markers are elevated,” he says. And only then does he turn to make eye contact with me. I know now, looking back on it, it was too hard from him to tell me. He really didn’t want to deliver that news that day.
When he tells me, he knows I know what that means. We’ve been a team for more than five years by then. He knows I know. It doesn’t need to be explained.
He looks at me while I crumble. And swear. A lot. He comes over to comfort me. I am alone in that room with him. No one expected this to be anything but routine. I didn’t bring anyone with me for the appointment, I almost never had company with me at any of my appointments over the years. That’s how I liked it most of the time. I still do, actually.
But today’s visit rapidly becomes the farthest thing from routine.
……
I wasn’t expecting it. I confess that. The pain I’d complained about a few times during those five years? That pain had never turned out to be anything.
And oh… by the way, that rib pain that I complained about? It actually was nothing. It was just sore ribs from the old fractures.
I was sent across the street to the hospital immediately for a chest x-ray. This looked clear. My PET scan the next day showed no cancer where I’d complained of soreness. But there was cancer elsewhere: in multiple bones and lymph nodes. It really was what we feared. We were lost, falling, reeling, grieving.
Within three days I was having a surgical biopsy through my neck to gather malignant tissue and lymph nodes. Within two weeks of the news I had the true sign that would have taken me to a doctor anyway: bone pain in my collarbone area from a fractured first rib caused by cancer breaking through the marrow into the bone.
I’d have found out within a few weeks that I had metastatic cancer anyway when the pain in my shoulder got severe… which is why some doctors don’t even use tumor marker tests. The marker tests don’t reflect cancer activity for everyone. Physical symptoms are usually quite reliable. And let me also point out that a lot of muscular pain can be hard to distinguish from bone pain depending on location. I’ve had both. And it’s not easy to tell them apart in my opinion.
I went and met with my other oncologist a few days after that.
I started chemo within ten days of hearing my diagnosis.
Things moved fast.
Life changed forever.
……
The weather is changing now. It’s warm this week so I don’t think I’ll be reaching for those boots.
But when the cool air comes again in a week or two or more I am not sure how I will feel when I reach for them.
Right now they just make me feel sick.
Link to Twitter
The boots are beautiful. Such a pity you have this association with bad news. Hope you can wear them to a better occasion. Maybe to the trial appointment? Take care.
“I’m sorry,” are some of the worst words I’ve ever had a doctor utter to me. Always holding you in my heart. xoxo
Eloquent and heartbreaking words. I really feel for doctors when they have to break news like that.
As always, a huge transatlantic hug from me.
xxx
Such a hard post to write. Thinking of you today.
The boots are from Before. A souvenir of another place and time – like having a conch shell in your living room in CT.
I like Diana’s idea of wearing the boots to the trial appointment. It’s scary how fast our lives can change sometimes.
I have photos somewhere of places I traveled. Places I traveled with my ex-boyfriend. We were together for several years before his addictions and the violent behavior that came with it finally woke me up enough to get me out of there. I have trouble looking at those pictures too. I know that behind every pretty picture of an exotic place is a story that is not so pretty. Sometimes our memories are bittersweet like that.
I like your boots. I hope you have the chance to make some better memories with them. I may never travel to exotic places again, but you can still wear those boots.
I love this: “I know that behind every pretty picture of an exotic place is a story that is not so pretty.” So true and so easy to forget while we are busy trying to keep up with the Joneses.
I’m sending you a lot of love.
Lisa-
This was heart breaking to read, but one I’ve wanted you to write and I’m glad you did. By reading how it was for you and replying I hope we all offer you our support and love for what you are going through. Plus your wisdom of the signs for you and how they detected it might help others. You truly are an amazing woman and I am proud to call you my friend. Today brings sadness and I will think about you all day.
Thank you for sharing this. You are changing lives every day; you’ve changed mine. Sending virtual hugs and support your way.
Lisa
Lisa,
I love your writing. You break it all down so clearly. We, your readers, are right there sitting beside you experiencing the past and present of your journey. It’s brutal, this diagnosis. As you have done all along, keep persevering.
My youngest daughter is doing the Run for Cancer this weekend — I asked her to dedicate her run to you and all the others I know who have been impacted by this scourge.
I don’t know you but through your writing, I am humbled.
You have changed me.
Thank you.
Thank you for sharing your journey and offering support to so many women. Your words make a difference. I admire your honesty, forthrightness and strength and your ability to openly share your experience with others.
Lisa,
Your writing grabs the reader by the heartstrings. It’s so clear and concise.
I wish I could do the same as I try to write about my breast cancer. You have a unique gift.
Like the others before me said, I am thinking of you and sending support across the miles. .
Just a thought to be gentle with yourself regarding these Black Suede Boots, Lisa. I am mindful how things can act as traumatic triggers. When the right time comes, only you will be able to discern whether or not it feels okay to reach for them again, to perhaps associate them with a new circumstance or to decide to dispose of them with or without ceremony. There is no right or wrong choice about this.
Anniversary dates are powerful. I wish you did not have to acknowledge such a date but thank you for bringing us alongside you with your gift of writing. I hope, today especially, you find beauty.
Thinking of you as I often do.
Oh, Lisa, I am holding you in my heart, every day and especially this day. The one year anniversary of my breast cancer diagnosis is coming up soon. Someone just asked me yesterday if I were cured. What a jarring word. Wishing you peace today.
I have bone mets too and just so you know – I love to wear designer shoes and my Chanel earrings to the Onc !!!!!!!!!!! Love the boots !!!!!!!!! Hang in there and know that you are not alone in this Stage 4 nightmare. Big hugs !!!
I look forward to your post entitled “Black Suede Boots (50 years ago today….”) — and counting. I too was surprised by my diagnosis. Doctor said he didn’t need to see me for six months and it was the blood tests he took that day that started my journey. Hoping you are able to get through today without too much sorrow.
I think of you so often… more so on Mondays. Your thoughts fill my Twitter feed. Your current path is one I’m too superstitious and scientific to ignore. I love and hate how you refuse to doll it up. Your sweet husband (who I haven’t seen since high school) wrote to me only a short time before that October 1st… to encourage me at a time I needed encouraging by sending me the link to your blog. And then, the news. I’ve written about you, talked about you (with Hester Hill Schnipper and other surviving types I adore), and prayed for you (can’t help it). You’ve reached farther than you can fathom, dispelling myths and spreading good information and being brutally honest.
This time last year, I had just found your pink ribbon poem… and every year I can, I’ll repost this:
http://eastmeetsbreast.wordpress.com/2012/10/04/awareness/
You don’t know me but I pray for you and your family.
I know saying someone is “brave” in the face of what you face can sound trite. But I guess the way you are so composed and together and able to share and communicate you private devastating diagnosis in such a classy manner leads to the inevitable adjective; brave.
Hi Lisa,
I’ve been following your blog since my mom was diagnosed with stage III nasopharyngeal cancer 4 months ago. It has been a time of chaos, pain, and fear.
I know you hear this from your devoted readers but let me reiterate how valued and appreciated you are in this world, even by people who have never met you.
And to be perfectly honest, I would have never understood the other side of the pink ribbon campaign until I read your blog today. To see it in a different light is sad in a way but useful as well. Knowledge is power after all.
With that said, I hope you do wear those boots again. They are super hot, and you deserve to feel like a badass in them.
Sending love from Chicago <3
Thank you for being you.
Much love.
xo
Thank you for sharing Lisa.
Your reality one year ago is one of my biggest fears, only usurped by the fear of either of my kids ever having to hear the words “You have cancer.”
Rather than fuel the fear monster, your words validate my fear of a cancer recurrence (at any stage) which somehow, in turn, makes things seem less scary.
So thank you again for sharing.
Sending much love to you and yours,
S
What a hard, hard year for you..but you have never stopped seeing and, yes, creating beauty. Unlike many others, I find myself rooting for you to donate those beautiful boots! You are carving a new and oh yes inevitably altered future every day.. you are moving on and coping. There is so much, sadly, you can’t shed from that day. So…
Goodbye Boots! who needs a tangible reminder of that day on your feet?! Of course Lisa, you will make the decision and it will be right….Thank you for this post and a vivid necessary reminder of reality for too many breast cancer patients on the first day of October.
powerful lisa – thinking of you and always reading about what and how your facing this nightmare
ugh – I can’t write the way you can – ….sorry, nightmares end and you wake up I guess. This is your life / reality. F’ Sucks
I think of you every day. xo
Your writing never ceases to move me, Lisa. This has been a very challenging year for you to say the least, but you’ve done a stellar job educating so many of us and have carefully deconstructed your path.
Your boots. That struck a nerve. Oddly, I’ve had a similar reaction to several shirts that I wore to my first surgical consults that had been long time favorites. For some reason, I’ve never discarded them, but every fall for the past four years, they’ve been moved back into rotation. I thought about this at the end of last spring and told myself if I didn’t wear them this year, they’ll be up for donation at the end of winter. I’m not so sure they hold so much power over me anymore, but time will tell. Maybe they represent part of who I was or some kind of talisman. But there’s no question they stir up a lot of emotion.
Why is it that in a crisis, we seem to remember the most insignificant and irrelevant minutiae?
Sending you much love, xoxo ABH
Lisa-
Again, I stare at this little white box, typing, deleting, rinse and repeat… nothing I can say is “right”. You are one of the most amazing people I’ve ever “met” through Twitter. I think of you daily and every time I cross the border into your town I send out a “Hello! I know you’re here somewhere!” I’m there to visit my mom whose only recurrence thus far was dealt with much less trauma than the original diagnosis.
I cry knowing I can say that but your children…. and too many others’ children…… can’t.
And I apologize for not saying a word yesterday. My issues aren’t terminal, but they are debilitating.
You’re in my heart always.
Blessed be.
Lisa,
A year ago my sister, age 37, was diagnosed with metastatic ovarian cancer, just 8 weeks after a CT scan showing ‘just a cyst’ on her ovary. A blow to her, to her fiancee, and our family! A friend forwarded me your blog showing how to organize a binder. . .I have been following you since. Your journey, your boldness, your willingness to share your journey has strengthened me, has led me to ‘what not to say, and what to say’. I thank you from the bottom of heart, as your example helps our journey be one of more boldness and action. Positive thoughts for you as you go into your clinical trial!
Your mets diagnosis experience is very similar to mine (9 months ago). My tumor markers were elevated before any symptoms appeared. Imaging revealed mets to my bones and my lung. But I am doing pretty well, considering, making a lot of lifestyle and dietary changes to boost my immune system and stay around as long as possible. I hope we’ll both be able to look back on these dark days from a happier, sunshiny future. xoxo
Anniversaries are tough. But, I celebrate that you are here. Thank you so very much for sharing. You are touching the world in ways that are much greater than any of us could ever comprehend. This I know.
Hi;
I saw a tweet from you RT’d in my TL and found my way to your blog. I was diagnosed with stage IV metastatic breast cancer back in April of this year at 37 yrs. old. I’ve been on Tamoxifen and will be seeing a new doctor (moved to another state recently) for further treatments.
My finding your site this morning was a fluke but a godsend.
I am only now at the beginning having been diagnosed with Stage ll Lobular on Monday 9th September. We didn’t tell my family until after my son’s wedding on 27th. Having MRI on 8th Oct and Mastectomy on 15th. I am 66 my birthday was 2 days before my son’s wedding. I have my own business in UK (IT trainer) and I am hoping to keep working for a little while – my husband isn’t keen on this idea.
I have not read all your blog yet, but I will. Right now I am going out into my garden to continue to dig over my veg plot (only 18′ x 20′) by digging in organic material and perhaps counting my worms – I am very proud of the worms in my garden – they are big, fat and juicy (don’t ask).
Thank you. I know you have love and more than a little courage so I can only wish you strength and a big dose of luck.
Teressa
PS (my 4 grandsons aged 3 – 10 call me wrinkly, my son calls me Witch and my daughter calls me Mother – intake of breath then said (screamed) through clenched teeth, but she did make me a beautiful cake for my birthday it was a large brown boot and she wrote ‘Right Old Boot’ on the side)
ちょっと私は、これはオフトピックです知っていますが、私は自動的に私の最新のTwitterの更新をツイートし、私のブログに追加することができ、任意のウィジェットを知っていたかと思いまして。私はかなりの時間のためにこのようなプラグインを探してきたし、多分あなたは、このようなものといくつかの経験を持って期待していた。あなたが何かに実行する場合は、お気軽にお問い合わせください。私は本当にあなたのブログを読んで楽しんで、私はあなたの新しい更新を楽しみにしています。
より多くの書き込み、私は言わなければならないすべてのthats。あなたはあなたのポイントを作るためにビデオに頼っているかのように文字通り、それはそうです。あなたは明確は私たちに何かを与えることができたとき、|サイトのブログあなたにちょうど投稿する動画のあなたの知性を有益読み取るyoureの理由捨てる廃棄物、について話して知っている？
こんにちは！ 私が実現これは種類のオフトピックしかし 私が持っていた依頼する。 オペレーティング·ない仕事十分に確立されたウェブサイトなどあなたは必要とする ？ 私は完全に新しい毎日 。 私は私がブログを開始したいと思いシェア私自身のと気持ちオンライン。 あなたが持っているなら、私に知らせてくださいためアイデア提言かのヒントを新しい志望ブロガー。 ！
Lisa, Thank you so much for sharing your life as it is. I know you must have so many emotions turning over in your mind. I was diagnosed with invasive ductal carcinoma Nov. 24. I initially found the lump in late September. Who knows how long it had been there. Anyhow I’ve had my surgery, double mastectomy with reconstruction just last week. I will soon start whatever tx neccessary once my breast tissue path report comes back. I know my cancer type is a different type than your’s but I have experienced rib discomfort as well for quite sometime now. My doctor doesn’t seem concerned with it and thought that anything else would have been revealed in the sentinel lymph node biopsy. I’m new to the breast cancer world. No woman in my family has been through this. What do you think about my rib discomfort? I’ve had a snowboard injury in the past but it was a long time ago, at least 6 or 7 years ago. Thank you for your courage and may you have the strength to keep pressing forward!
my lump wasnt found til the middle of march 2016. I rolled over in bead and felt a stinging., Diabetic neuropathy has my hands numb and I didn’t feel it earlier. two days later during a physical, I asked my doctor ” whats this doc, it kinda hurts”. from there it was tests after tests in womens clinics ( did I mention I am A GUY)?and a mastectomy april 1. Ah yes, that sentinel node injection, hurt so much that I am surprised more people don’t die right then. still brings tears to my eyes when I say it. My breast cancer went to stage 4, spread to a rib and the base of my spine. I aM NOW ON TAMIFLOXIN AND EXGIVA. Does anyone know how to stop the pain of exgiva? hurts for 6 days or so. but the tamafloxin seems to be working.
hi Lisa,
have you been taking Tamoxifen these five years?
Sohe,
I am the last post before your’s. I am supposed to take tomoxifen. I took it one week and had terrible side effects right away. My oncologist told me to take a break and try again after having my hysterectomy, which is proactive surgery for my estrogen receptive cancer. I don’t want to even think about taking tomoxifen again even though I know it’s supposed to protect me from getting the cancer again. Have you taken it? Do you have advice?
I found out I had beast cancer last march. after going to the same doctor for a physical for 24 years 4 times a year the first time he checked me was when I said whats this, it kinda hurts. two weeks later, surgery for stage 4 breast cancer. spread to a rib and the base of my spine. I am on tamoxifen now, and it seems to be fading.
by the way, I am a guy. Guys get breast cancer too, and are more likely to have it spread, since they seldom get checked for it.
21 lymph nodes in the bucket, arm and hand swollen with lymphedema. of course my left hand, the one I use.
I wish I had a chance to chat with Lisa, before she passed, she sounds like someone I would like to know.
has anyone found anything that works against the pain of exgiva? it seems a bad trade, 6 days of bad pain for keeping the calcium in your bones. I have started scheduling the shots for Friday after work, to cut down on lost time from work.
I have checked blogs all over the net, and apparently the real bad long lasting pain from exgiva is rare. I go today after work for another shot, I wonder what part of my body will think its destroyed now. last time, two hours after my shot, I woke up from a dream that I was in a car wreck and the left side of my body was crushed. after waking, the pain lasted 6 days. and I was not in a wreck.
I had an exgiva shot at 4;00 pm Friday. I took 2 200 mg ibuprofen with a lot of water before. shot at 4;00 pm and pain didn’t start. could it be I found the key to preventing the pain?