Monday, July 22, 2013

Day 1,125: The Calm Before the Storm

Sometimes, when a person has cancer, her writing is filled with deeper thoughts. And sometimes, her writing is about cancer, and what it feels like to have it, especially if its effects are somewhat unexpected. This post falls into the latter category.

I never thought I would feel this way about a cancer recurrence, an event I have been dreading for more than three years and trying to will away as if wishing for something can actually make it true. I never thought I would feel so much...nothing.

Obviously I don't actually feel nothing, but my emotions do not seem adequate for what has happened. I was diagnosed with cancer for a second time only 10 days ago. After going through a grueling series of scans and tests and spending seemingly all of my time at the hospital or in the cab on my way to the hospital, I found out some things that were truly important. First, I learned that I would have surgery--a mastectomy--on July 24, which is less than two days from now. I decided to do a one-step reconstruction (done at the time of surgery with a saline implant, with no additional appointments; it is easy to remove if I don't like it, or so I've been told.). And then, I learned this:

I don't have metastatic breast cancer.

Or, at least it doesn't seem that I do, not right now. Who knows what's going on inside the cells of this body? Regardless, I have been busy with cancer, living a cancer life, for the last 10 days. Of course, life continued in all of its other manifestations, and I still had small kids at home, I still had to work, and I also had to figure out how to manage the extremely complex new plan for my transition to my new job. Everything has been a blur. I actually have no idea how I managed to get all of those scans, tests, and appointments scheduled so quickly; I think my entire medical team feels terrible that this has happened, and I have been put on the fast track. So six days after my diagnosis, I received the news that my breast MRI was clear, meaning that I would be able to have a single mastectomy and conserve the right breast, and my bone and CT scans were also clear, meaning that I do not have mets.

"Clear" is an ambiguous term in cancerland. For example, the woman who gave me the news about the CT scan had a distinct lack of compassion in her bedside manner. She told me that my scan was fine, though there were some nodules on my lungs. And I thought

I have lung mets.

She told me that these nodules are present in almost everyone in the midwest, that the radiologist even marked that they were most likely benign, and they would "not worry, just scan again probably in 3 months." And I thought

I have to go through that shit again in 3 months?

I tried not to think about it, but seeing as that wasn't possible, I just changed the subject and asked about chemo. She answered me flippantly: "Oh, I'm sure you'll have to do chemo."

What? But I was told there was some chance that wouldn't be the case! If it hasn't spread, and it's really small, and if we find out it hasn't spread to the lymph nodes...even though I'm triple negative...and then my mind was spinning, full of the knowledge that it wasn't as if they were going to offer me chemo because they knew it would work, but rather because they knew that nothing else would. I started thinking about the fact that I had already taken my lifetime allotment of adriamicin, that cytoxan is a drug they would mostly likely want to give me, and it is literally a derivative of mustard gas with a 100% chance of killing my ovaries at least temporarily and taking from me the sexuality and vitality that I currently have, I started thinking about taxotere with its 6% chance of permanent baldness, the permanent neuropathy and chemo brain that so many contend with, and suddenly the "Flowers for Algernon" effect that I have discussed here before was fully present. Oh, to know what will happen because it has already happened, to know what is coming, to have to decide if it is worth it. I will go on record to say that I am not sure that it is. I know how that sounds and I know that is not what I am supposed to say. But it is what I was thinking then, and what I sometimes think now when I allow myself, but at the time of that phone call my mind was reeling...

And she went on about a study. One study. Showing there would be some benefit to me. Because I have a 1.3 cm tumor.

EXCUSE ME? The ultrasound showed that it was 0.5 cm! And I was told that the possible difference between chemo and no chemo was whether or not it was under 1 cm!

Oh, she said nonchalantly. Yeah, sometimes the MRI magnifies the tumor. You won't know until surgery, and you'll meet with your doctor a week after that and he will let you know.

Thankfully, a different nurse had already called me with the results of my exams, and she was ecstatic for me. The humanity she brought to that phone call counterbalanced what was to come from the second phone call.

Though I was let down by the uncertainty of whether or not my scans were clear in a normal person sense or just a cancer person sense, I was so thrilled to get the news of not having mets (not now, not yet, not ever?) that I had the giddiness of a child. I went to the gym and flew on my bike in the spinning studio. I made waffles for dinner. I spent the late part of the evening talking and drinking and making love with my husband. I thought about this:

How strange it is to be glad to just have breast cancer twice.

I started to think of how I felt when I was diagnosed the first time, and how much I would have given to have been the young nursing mother without cancer, or at least without knowledge of her cancer, that I had been before May 4, 2010. I thought about how much I would give to be that woman again, the one who had finished cancer treatment once and never had to do it again, the one who kept her perky, beautiful breast even after all that had happened. I even let my mind wander to the people I know who have had huge tumors, lymph node involvement, scattershot pre-cancerous cells, who nonetheless never had a recurrence.

And then I mentally slapped myself.

I know, though I can't really KNOW, how much so many women would love to be like me. The one who, for the time being, only had breast cancer, in the breast, twice. The one for whom the waiting has been the hardest part--for waiting is only the hardest part if at the end of the waiting, you receive good news. Otherwise, the bad news and the reality that it brings is the hardest part. I am not right now facing a terminal diagnosis, an incurable disease. I am facing the reality of having to do chemo again, probably, but not for the rest of my life. And so it goes that I am angry and resigned and relieved all at the same time, which might explain why those emotions manifest as me behaving pretty much exactly like I always do, but with more pictures of me in a bikini. It might explain something that most people don't realize when they're faced with someone who has a thing like cancer.

We don't know what to say either.

Now, we know what we're SUPPOSED to say. We're supposed to say something to make you feel better, to make you feel that it will be all right. We're supposed to be all, CANCER! BRING IT ON! But some of us have done this before, and somewhere along the way we lost the ability to pretend. So, when you ask how are you? someone like me might say "I've had better weeks," or "plowing through the bullshit, thanks." If you say I'm sorry, I might say, "I know" or "me too." If you say, is there anything I can do? I might say "Not yet, but when it comes time for that, just show up at the door and ask. Because calling people to tell them we need something is a thing that I might just be too busy and overwhelmed to remember to do." You ask what the plan is, and I say I honestly have no idea. You ask how I'm feeling, and I say "like myself. like a really healthy, fit person. except for the cancer." If you are a radiologist about to perform a core needle biopsy on me, and you ask me to verify my date of birth and then you look at me and say " you are a very young woman," you probably expect me to say something other than "I know. I was even younger the first time." Because not only is that hard to hear, it is impossible to miss the fact that if I said the first time I know before I KNOW that it is happening again. If you happen to be another breast cancer survivor and you ask me if there's anything I need, I will be as honest as honesty allows and say:

Drugs and a time machine.

Sometimes I think I would like to go back to the time when my body just worked, when I wasn't fighting it or fighting someone else who wanted something from it. In order to do that, though, I would have to go back to about five years old, before epilepsy and being unable to walk and cancer and the way I learned to be mean as a teenager. So maybe that's not it. Maybe I'd just like to be done, and yet I know that isn't how it is for me, so it is hard for me to feel emotional about a thing that just IS.

I will miss my breast. Right now, a month shy of my 38th birthday, after two pregnancies and 18 months of breastfeeding and two breast surgeries and radiation, my breasts are still perky and beautiful and my nipples are beautiful too and I don't care how that sounds. I am angry that I can still get away with wearing a bikini, and yet I might never be able to wear one again. I am sad that my husband looks at my naked body with desire mixed with sadness, as he knows that we only have one more day with this body as it is right now. I am done caring about people who assume breasts are irrelevant body parts, because no body parts are irrelevant. I will not get into the disturbing experience I had with various surgeons trying to convince me to do reconstruction, nor the advice of others who haven't been in this situation. There is one thing that I'm going to say about my mastectomy, because it is the opposite of what most people are expecting me to say.

I'm really, really glad I didn't do it three years ago.

The chance of this recurrence happening was in the single digits. It was less likely for this to happen to me than for a healthy woman to be diagnosed with breast cancer. Besides the fact that I had many fewer issues with scar tissue, range of motion, and muscle pain, besides the fact that I had no drains to contend with, no major restrictions on my activities after the first 10 days with a lumpectomy than I will undoubtedly have with a mastectomy, there is the fact that the surgery itself is so much more arduous. It takes many hours, you have to stay overnight in the hospital, and it takes weeks and for some people months to recover.

I recovered from my lumpectomy in about 5 days the first time, and 3 days the second time.

That was so, so important back then...if not for other reasons, for this reason:

I had a baby.

My son turned one just days before my first surgery. It was hard enough to see the look on his face when he wondered why I stopped nursing him all of a sudden, but how could I have explained to him that I couldn't hug him, couldn't hold him or pick him up, for weeks and maybe months? What would that have done to my relationship with him? Even when my body was being ravaged by chemo, I could feed him a bottle, hold him and sing to him.

I know there are women who have no choice but to figure that out with their babies. But I wasn't one of them. So I'm going on the record to say that I regret nothing. This is especially true because I don't believe I am really having a cancer recurrence at all.

I believe this cancer has always been there.

When I was diagnosed the first time, I was told that my three tumors, the smallest of which was 0.5 cm, had been there for 3 to 5 years. I was told that even with fast-growing, triple negative breast cancer, that is how long it would take for a solid tumor to become palpable at that size. So. It takes three years for a solid tumor to grow to be 0.5 cm.

Here I am, three years later.

The fact of whether or not this is a recurrence or just unfinished business is not relevant in a sense. But in another sense it is, because of the possibility that I have never, not for even one day, been cancer free. That idea could be crushing, except for this:

Except for this.

It is this that makes that reality easier to bear, this forum that brings me this calm acceptance, because I have always stated here that cancer is not a learning experience. If it was, everyone would do it. Cancer is a disease that can ravage your body and lie in waiting and come back when you least expect it. It can happen even if you do everything that was asked of you, from treatment to overall fitness. If all it took was the willingness to be a fighter and kick ass and take names, cancer would be on the losing end of history by now.

I'm sorry that is how it is. I'm sorry that I am not one of the ones who fought the good fight and won. I'm sorry that I have to start over, that my cancer clock will start ticking again from midnight, as I await some vague milestones that once seemed so important but now just seem like another way to mark time as it passes, quickly and inevitably. I am no longer a three year cancer survivor with no evidence of disease. I have probably never been that person.

What I have learned over the last ten days is that in a sense, that reality is harder on other people than it is on me, or my husband, or my kids. No illusion has been shattered here, because we worked through the illusion long ago. I wish I could say that KatyDidCancer, but apparently Katy is still Doing it. When I say that why me? is the wrong question, and why not me? is the right one, I hear all the people who say, because it was you already. Because it shouldn't be you. I hear it and I hear the sadness and anger and disbelief in others' voices, while I am left with a resignation borne of the knowledge that this never should have happened at all, but it did, and well, here we go again. Just as having cancer cured me of my fear of heights, being honest about the unfairness of the physical, corporeal world has spared me the grief of disillusionment.

It would be a lie for me to say that I never thought I would write these next few lines. I thought I might have to write them, but I hoped not; that, I suppose, has kept me going.

In less than a day and a half, I will have my breast removed, along with potentially all of the lymph nodes in my left arm. A week after that, I will receive a pathology report and recommendation on a second round of chemotherapy.

Wish me luck.


  1. I am wishing you so much luck. Sending you so much love.

    Hoping for as little pain as possible and as much strength as possible.

    Thinking about you.

  2. I wish you luck. The unkind reality is that that's all I can do, really. Wish. And pray and hope, somehow, it might make some kind of infinitesimal difference in the way things work out. I feel so helpless and yet, I know you are one of the most amazing women I have ever met. Your strength and courage are an inspiration to me and if there's anyone who's capable of willing herself to beat this thing, it's you. Good luck.

  3. Sending luck with everyone else. And wishes for a speedy recovery so you can get back to kicking ass as soon as humanly possible. xoxo

  4. Even though there are probably other women out there who wish they were like you, even they know that they have their own struggle, and this is your struggle. They can't make yours easier any more than you can make theirs. So you have every right to hate this struggle ahead of you. Cause it sucks. Sending you all the healing energy I can get over there - hope your surgery goes really well.

  5. I'm happy to hear you don't have metastatic breast cancer, but hate that you have to have a mastectomy and endure more surgery and the recovery process that goes along with it. Thank you for sharing your experience and feelings with us via your blog. I love your writing. It's so real and open with raw honesty. I'll be sending you lots of love and healing energy. Best of luck to you, Katy!

  6. I'm wishing you all the luck in the world and so much more... you are in my thoughts, especially tomorrow.

  7. Hi Katy,

    I have been a silent follower of your blog for a few years. I am connected to you because I, too, had triple negative breast cancer. One night when I was researched this horrific disease, I found your blog.

    You are such an inspiration to many. Your style of communication is so special...please continue writing.

    Given your recurrence, I prefer to no longer be a silent member of this sisterhood. I would like to be there for you -- in love, thought, prayer and to help you in anyway I can. First, I give praises of thanksgiving that you do NOT have metatastic cancer!!!

    A little info about me...I have had a bilateral/double mastectomy (two seperate surgeries) and I can relate to ALL of your concerns. During my journey, I was gently and yet strongly supported by sixty constant warriors who where there with me each step along the way. Yet, like you say, only YOU (the individual) can endure ALL that needs to be done to fight this nasty disease. I had my quiet and lonely moments -- those crazy moments where your thoughts take over. And then slowly, I regrouped and strongly endured the next moment or moments -- and I got through it.

    I don't know why bad things happen to nice people. I know you through your blog AND I know YOU are a very kind and loving person.

    Having been through a breast cancer journey, if you have any questions and/or need any support, I would like to be here for you. I know how to stretch an arm to regain total range of motion from lymph node removal; I know how to empower food to keep your strength up during chemo treatments; I know a simple & natural, yet effective, way to eliminate constipation caused by drugs -- the worst kind of constipation ever; and unfortunately, yet fortunately, I developed lymphodema due to lymph node removal -- so a specialist trained me on how to keep the lymphatic system open so I do NOT have to wear a sleeve and glove, which are useless; and I have been a great support to various cancer patients (breast, brain, oral and lymphoma/blood).

    As a past breast cancer patient, I know WHAT you are going through, and then not -- because each journey is unique. If you would like to chat and/or reach me, here's my CONFIDENTIAL email address: (If you chose to write, kindly put "KATY" in the subject of your email and I'll know to open it vs. automatically deleting it.)

    Hopefully, all of the above info does not overwhelm and/or shock you. Here's one more factoid that connects us.....I was born in Chicago and raised in the Chicago Metropolitan area suburbs.

    I look forward to hearing from you. If you chose not to write me, either way -- I will continue to be a huge warrior for your return to good health! You have all the reasons in the world to walk this journey again and return to good health.....Those reasons are a kind, loving & supportive husband, two beautiful & awesome children, a loving family AND countless friends. My motto...with or without cancer, take it a day at a time.


  8. Hi Katy,

    I was diagnosed with extensive DCIS a day before my son's 9th birthday last July. My daughter was 5 and we were 6 weeks out from a miscarriage at 18 weeks. I was 35 years old. Due to the slow pace of Canadian healthcare, I didn't have surgery until October. I had a bilateral mastectomy with immediate autologous reconstruction. We thought going into surgery that there would be no chemo, no radiation and we could try again for a baby. When we got the pathology back, there were 4 invasive tumours, the largest of which was just over a cm. ER+/PR-/ HER2-. DCIS in all the margins, so 8 dose dense ACT chemos, 25 rads and 5 boosts. No more babies. We shaved my head Christmas Day.

    I expected to be devastated by the loss of my breasts. They were lovely and full, my best feature. I don't know how you will feel, only how I did feel. I seldom miss my breasts. When I do, it is a fleeting wistfulness for my life before cancer rather than the actual breasts. While I was in treatment, I missed my eyebrows more than my breasts. I'm only six weeks out of treatment but am finding that I miss the hope of another child and my formerly sharp mind the most.

    Sending best wishes your way. You will do what you must to parent your beautiful children, love your husband, excel at your new job and express what many of us feel but lack the eloquence to blog. While you're doing that, try to remember that it isn't selfish to be sick.