Friday, August 2, 2013

Day 1,136: Rolling the Dice

I've never been a gambler. I find it boring, actually. I've gone to casinos in Vegas, in San Juan, on reservations in the north woods of Wisconsin. The disparity in glamor and atmosphere at these places has never masked the overall feeling of tedium that I personally feel when I walk through the door. I like the people watching, and I love to play cards, but if I lose at blackjack, hey, I lost. I don't even consider the high I would supposedly feel from winning, because I figure the house always wins, so I just move on, wishing there was something else to do. Oh look, I just lost some money in the slot machine. That wasn't fun. Want to go get dinner?

And now, my life has turned into a gamble, and it still feels tedious, and I'm still pretty sure the house always wins, and unfortunately, I'm not the house. I'm the guy standing in the corner trying in vain to get some quick cash so I can chase an impossible dream because I really wish my life had turned out differently.

I received my pathology report from my surgeon on Tuesday. Tuesday was the crying day for me, therefore. Or I guess I should say it was filled with short crying moments. Yes, there was good news. All of my lymph nodes and margins are clear. But Tuesday was the day when I learned that my tumor, which was estimated to be 0.6 cm at the time of biopsy and therefore potentially small enough to not warrant chemotherapy, is exactly 1.0 cm. Any breast cancer tumor 1.0 cm or higher leads to suggested additional therapy, and my cancer is once again triple negative, so there is no other therapy available. It is grade 2, which is better than grade 3 (tumors are graded 1-3 on how closely they resemble normal cells. think of grade 3 cells as the most mutant of the bunch, 1 the most normal, 2 somewhere in between). It is, apparently, a miracle (again, yes, I've heard that before) that I found it. On the day of biopsy, it still didn't show up on the mammogram. Not to scare women who have been led to believe that mammograms are amazing lifesaving devices, but think about it...the tumor didn't show up on 8 different views of mammography...and they were specifically looking for it. It could only be seen on ultrasound, and even that was questionable. Like most young women, I found the tumor myself. In fact, I've done that twice now. It's a skill I'd rather be done with, frankly.

So, as my surgeon said, mine is a "very interesting story." It is something "we don't see very often." It is "amazing." And it is "a very, very good thing that (I) found it so early." My story is apparently something that has affected lots of people, including my medical team, which is comprised of people I would assume would be used to this stuff by now. This surgeon, who barely knows me, said "from my perspective, your surgery and the results from it went perfectly. As for the rest of it, if I could take it all away, I would."

But that's not possible, is it? And so I went to see my oncologist Wednesday, resigned to the fact that he would recommend chemo for me and armed with all the things I was going to say about it. I spent a sleepless night remembering all the strange side effects I had, including ones they had rarely if ever seen before, and how hard it was to get anyone to pay attention to me about them. I remember being told I was "fine," no matter what was happening. I was getting angry and I was getting my dukes up and I was all ready to storm in the door like that fictional cancer badass everyone wants to believe in so badly.

And then, the physician's assistant came in, and she just looked crushed. She told me she had been "reeling" when she learned of my recurrence, which is a weird thing for her to say, frankly. She said that the doctor would recommend chemo, and that he would probably specifically recommend TC chemo (taxotere and cytoxan). I told her those were the two specific drugs I was hoping to avoid. I told her how extreme and devastating the menopause was for me, and how I knew that three years had passed, so I was older, and this was the second time, not the first, and the likelihood of that being permanent was high. A tear threatened to come out of my eye. She looked so sad for me. I talked about various chemos, and said look, I know a lot more than I did three years ago. And she just nodded and said, yeah...and you've done this before. Eventually she left and said she would bring the doctor in, and we waited.

There are a few things you should know here. One is that cytoxan is one of the harshest drugs a person can put into her body without dying. I am not being dramatic. It's the truth. People associate baldness and vomiting with chemo for breast cancer, but I don't think they often consider WHY those things happen. Cytoxan tries to kill all fast growing cells--all of them--and it succeeds. It destroys ovarian function and kills the eggs you are storing, leading (as I was told yesterday) to early menopause if you are lucky enough to get there. Because I took cytoxan 4 times, I now have the ovaries of someone 8-10 years older than me, and I will probably go into permanent menopause when my youngest child is in first or second grade. Think about what kind of drug it is that has that outcome. Taxotere is stronger than its cousin Taxol, which I took before, and it can cause permanent neuropathy, chemo brain, and other ailments. They both suppress immunity, leading to potential life-threatening infections, and they raise your risk of leukemia and other bone marrow diseases. Actually, all types of chemotherapy for breast cancer do those last two things.

You should also know that my oncologist and I have been dancing this dance for three years, wherein I have done annoying things like read all the information he gives me, argue with him, and insist that I know a thing or two about my body. We have come to an understanding, and part of that understanding is that ours will never be a relationship wherein he just tells me what to do and I blindly agree to do it. I have never been the kind of cancer patient I was supposed to be.

I was thinking about all of this when he walked in the door and asked how I was doing. I just looked at him, and he said, yeah, I know. This isn't good, this isn't what we wanted.

I knew right then that something had changed.

The first time I met with him to discuss chemo options, he handed me these binders and pamphlets filled with extensive descriptions of how the different chemos worked and potential side effects; he handed me an 85 page clinical trial that I deemed was not useful for me and potentially harmful and honestly, that's when the dance began, when he realized I actually read the whole damn thing and understood it. But this time? He just sat there. He had nothing with him. He told me I was not a statistic. He told me that he was not going to tell me that my prognosis was dire without chemo, because that wasn't true. He said that I needed to make a decision, and they would understand that decision either way. He told me I have an 80-85% chance of being cured by surgery, even taking into account my triple negative status. So my chance of recurrence is 15-20% if I do nothing, and chemo reduces the chance of recurrence by a third. And I did the math and said, so I still have a 10-13% chance of recurrence, even if I do chemo. He said yes, because most people in my situation are cured by surgery alone, and most people will not benefit from chemotherapy, because they don't need it. But I still recommend it for you, because there's nothing else that you can do.

I asked about platinum-based chemos, and one of the good and bad things about going to a top research onc is that he knows about all the studies, and he said, there is not a shred of evidence that those would specifically benefit someone like me, who has very early stage triple negative disease, and yet I would risk the more complex side effects including neuropathy and other potential long term problems. So, he recommended the TC chemo, as I knew he would since it has a proven benefit, and then this happened:

I told him I would not take cytoxan again. I said I wanted to avoid taxanes, and I understood they wouldn't give me taxol again, so it would be taxotere. I got ready for the argument.

It didn't come.

He simply nodded and looked me in the eye. He said there was a chemo regimen that used to be used for breast cancer: CMF chemo, but they could remove the c (cytoxan) and give me MF chemo for 6 months, and I would probably hold on to my hair, and the side effects should be much more manageable. It's still chemo, and it can cause extreme sickness, it still has a risk of menopause and bone marrow disease and infection from low blood counts, which is problematic for someone who is allergic to almost every antibiotic in the market today. I asked why people don't do this more often, and he explained that they added the C to the regimen because it provides an incremental benefit, but for someone like me with early stage disease and a small tumor, incremental would literally be not very much. He said they never go back in time, only forward, so as protocols change, most cases do not revert to the regimen of old, and yet, in my case, it would provide almost the same benefit and was a tried and true method. I asked about a million questions, and he answered them in a straight fashion.

I asked him to write down information about the regimen, and instead of handing me novels of information, he wrote it down on a script sheet--just the drug names, and the amounts, written as if I was a pharmacist who could easily interpret the information. He handed me a script for physical therapy (very says "evaluate and treat.") and then, I told him that I wanted someone to take the gauze and tape off that had been placed after my drains were removed on Monday because the blood had dried and everything was stuck to the skin. Except for excessive numbers of breast exams, I don't think he's ever touched me outside of shaking my hand. He looked almost confused that I would ask him to do that. And then...he just ripped it off, the way you rip a bandaid off a child, and he looked at me and said gruffly "sorry." And he patched me up again.

But those are just the specifics of what he said and did. Those words led me to this place of impossible decisions, and I am no closer to knowing whether or not to do nothing or to do this chemo regimen than I was two days ago. I am seeking a second opinion, but it is a real bitch of a process. It takes forever and usually involves you physically getting the slides of your actual tumor and carrying your cancer (literally, you carry your cancer) from one hospital to the next. But I discovered something on Tuesday that changed the game, that was so crushing to learn. Upon receiving my pathology, I knew that any oncologist anywhere is going to recommend some kind of chemo for me, so a second opinion will just be that, some kind of validation of thought process.

Something has definitely changed. Everyone--the surgeons, oncologists, nurses, PAs, fertility specialists, even my gyno (who visited me in the hospital prior to surgery and was absolutely devastated; I thought he would weep, and it was strangely difficult to see him that upset)--is treating me differently. All of the rhetoric of old is gone. All of the "you can do this!" "let's give this all we've got!" cheerleading and masking of reality has vanished in the face of the fact that I know what this is, that I know things now. No one is attempting to make me feel like this won't be so bad. No one is sugar-coating the truth in order to get me through the treatment. No one is making any promises. Everyone is looking at me with a mixture of sadness, resignation, and, I think, humbleness.

Imagine being in this business. Some people do it to try to save lives, to be a part of hope for a cure, and others do it with a little bit of a Jesus complex that enables them to think they can conquer cellular demons and cheat death. They see people suffer and they must tell themselves that it is for a reason, it is for a goal, that the suffering is short term and a thing of the past.

And then, someone like me comes along, someone who is young and fit and exercises like a maniac and weighs 53 kilos at the time of surgery, someone who has done everything that was asked of her--someone they could not cure. And that someone can no longer be treated as a box that was checked; that someone is a reminder of what cancer is, and what those who wish to fight it are up against.

But doc, even the radiation didn't work?

No, apparently not

And so it is that they look at me, and speak to me, as if I am not a cancer patient anymore, but a peer.

And so it is that through witnessing this change, and the devastation that so many have felt when they have heard this news of mine, that I realize that I have, in a sense, been freed.

I am freed of the burden of being a breast cancer survivor.

I no longer have to think about the "right" time to celebrate being cancer free, because it's possible I have never been cancer free. I don't need to worry about anniversary dates of surgery, chemo, or what have you, because now there would be multiple dates for everything and none of it means anything anymore. I don't need to write blog posts about how none of this feels like hope or like kicking ass, because it is just hard, and it is just life-threatening, and it takes a lot from you; I don't have to say this anymore because everyone knows now by looking at me that those things are true. I am not the woman the pink campaigns were intended to target. I am now one of the ones that other breast cancer survivors fear, though I am in a lesser camp of fear than women with metastatic disease, obviously.

I am the elephant in the room, albeit the baby elephant.

I don't need to talk about beating cancer anymore, I will not feel the pressure to be a skinny bald poster child of bad-assedness anymore. Now I can continue to do what I have always done, which is to say that cancer is a thing that is extraordinarily challenging, and it involves suffering and grief, and that is just how it is. It is a thing you can live with, and if you are someone like me, you can live with it again and again, because you don't have a choice.

I know people might think this is a negative attitude. The funny thing is, I don't feel negative at all. You don't see a lot of crying and wistful looks in this house. This recurrence has all but cured me of my reverse-nostalgia, as I realize that I should no longer worry about things that I might miss with my children as they grow up, because I have been firmly cemented into the present, as if nothing else exists but this, because nothing else can be known, because that is the truth.

If you were to come to my house (something that I know some people hesitate to do, because they don't want to intrude, or because it would bother them to see me, which I can understand), know this. You would see me cooking my own dinners, and yelling at my kids, and doing weird arm-stretching exercises. You would see me cringing at my inability to have anything touch my left arm due to temporary (I hope) nerve damage from surgery, and acting manic due to being forbidden to do much lifting or cardio; you might see me doing a one-armed forward plank. You would not see crying, or screaming, nor would you see ass-kicking or fist pumps. You would see me acting like a normal, functional person who is neither depressed by nor happy with her current quandary.

You would see a person who has been in a similar situation before, and who has carried the knowledge of that situation with her all of her life. I was diagnosed with epilepsy--a condition that kills more people every year than does breast cancer, though many fewer have the condition--when I was six years old. I took extremely toxic medication, which poisoned my liver and caused drastic side effects, though it worked for me. I was "cured" of epilepsy at age 8 through a series of events that not even Kafka could imagine, only to have epilepsy return to my life with a vengeance when I was 11. I stopped taking medication when I was 17, and have been seizure free ever since, though the specter of it remains, as it could come back at any time.

I know that I will never know why I had that condition, and why it did not cause the brain damage, cognitive disabilities, and physical impairments that it causes for so many. I know that while there were things that helped alleviate the likelihood of having seizures, such as adequate diet and sleep, nothing could erase the fact that I had epilepsy and others did not.

I know that there is an answer to the question of "why?" and yet it is not the answer most people want to hear. It is not an answer about not being healthy enough in other aspects of my life and it is not even an answer of environment or genetics or birth control pills or any one thing necessarily.

I have done this twice now, and that fact gives me permission to say the following. Why did this happen? The answer is obvious, isn't it?

Something went wrong.


  1. Amazing. Every thing you write I can feel. It hits very close to home of course, and I'm sorry you have to be in this situation again. As a fellow "survivor" it's is frightening to know that our cancer can come back after all the treatment and the surgeries, that it could just be there...waiting. I am only a few years older than you but chemo did put me in menopause at 41. Still waiting to see if it ever returns. I am glad to see that the surgery went good for you and the pathology shows that once again they got it with clean margins. Hugs for continued strength as you must face this all over again!

  2. Not that anything I can say, do, think or feel can make any difference in regard to what has or will happen, if I had my "druthers" I would live to be a ripe old age. Like 100. I think, by then, I'll be ripe. I'll certainly be old. Anyway, when I do go, I want you (again, if I had my druthers) to be at my funeral. I want you to tell everyone what a dirty old man I was, and always had been. You. No one else.

  3. I have never liked the title “breast cancer survivor”. To me it means that I have lived through a threat, which has ended. For an example: Jews who lived through the Holocaust can say they are Holocaust survivors. They are not being herded back to the concentration camps. That threat ended with their liberation. As we all know, there is not a cure for breast cancer and not even targeted treatment for triple negative breast cancer. For us TNBC people, the threat does not end with surgery, chemo and radiation. It can come back locally or worst develop METS, which there is no successful long-term cancer killing treatment. I see myself as “surviving” breast cancer. “Surviving” is a daily process and will only end when I die from something other than breast cancer. Only then should I be labeled as a “survivor”.

  4. Reading your words and abiding with you, Katy. Thank you for this update and your honesty about what you are thinking and how you are feeling. You continue to be in my thoughts and prayers as you deal with your cancer and live your life one day, one hour, one step at a time.

  5. Katy, I'm so sorry you have to go through this sh*t again. Your oncologist sounds very caring. Like Kristie, I don't like the word "survivor" -- this implies that breast cancer is over, and it never really is -- either a recurrence or PTSD or something.

    BTW, my treatment was CMF. Was it effective? I have no idea, but I hear you on the Cytoxan. That stuff is horrendous crap.

  6. Katy, I have had two separate primaries in the same breast. The first was 16 years ago and was hormone positive. The second was this past March and was TNBC. The first was 2.2 cm,stage 1, grade 3, and I had a lumpectomy, chemo, radiation and tamoxifen for 5 years. There was no lymph node involvement. This time, the cancer was 1 cm like yours, stage 1, grade 2, so I had a BMX and then chemo. I just finished the chemo. I had taxotere and cytoxan and finished it 2 1/2 weeks ago. I am BRCA2 positive. I also found the tumors both times-like yours, they did not show up in the mammograms at all. 16 years ago I had CMF. I hope I am done with this. God Bless you.

  7. Hi Katy I presented with metastatic breast cancer that is hormone receptor positive so I will go thru (hopefully) four or five "mild" options before chemo is on my dance card.

    I am not triple negative, wanted to make sure you know of the TCBN Foundation:

    Take care


  8. I was cancer free for six years going on seven it would be in November. Went to doc in December he said I was doing great he didn't want to see me for a year, He saw me the next month, January cause I found a lump Had mastectomy Feb 27th and just finished chemo 8/9-CMF - tough duty on the body having chemo twice, but if it prolongs my life it is worth it - though I am so glad I am done with it Hope this biopsy comes back good on Wednesday