Monday, October 21, 2013

Day 1,218: ChemoDrain

Chemo sucks.

It sucks when your normal chemo nurse isn't there, and three nurses can't figure out how to stick an IV in your very healthy veins, and when they finally succeed, you gush blood all over the floor and there are jokes about you being a "geiser" and you have to use rubbing alcohol to clean the ring your husband gave to you years ago for your birthday, which is engraved with "as you wish" from the Princess Bride.

It sucks to be so exhausted that you can't stay awake to put your kids to bed.

It sucks that you still exercise 2-3 hours a day and that doesn't seem to help with the exhaustion nor the cancer, for that matter.

It sucks to start to get your period on schedule and then have it stop abruptly when the poison enters your veins, so now you feel overweight and depressed and just PISSED that you will be in that menopause again with the incessant hot flashes and sexual dysfunction and all of this is happening 10 or 15 years too early.

It sucks that the chances of chemo working are significantly less than the chances of it not working.

That's how I'm feeling today--I'm feeling that this is hard, and stupid and surreal and just bullshit.

I know that many people who have not had cancer, and even some who have, feel that the only appropriate response is to talk about being a warrior and kicking cancer's ass and telling chemo who's boss. But come on--that makes no sense. Chemo is a drug or usually a combination of extraordinarily toxic drugs, it is part of treatment for a disease that kills lots of people. Diseases require treatment and often medication. This is true of diabetes, heart disease, epilepsy, MS, you name it. Why are we the only ones with this bizarre and illogical warrior badge? It just doesn't fit. It especially doesn't fit someone in my situation. While most people have been very supportive of me during this recurrence, others seem to feel almost...disappointed, annoyed, even angry that I am doing this AGAIN. I have heard this from every woman I know who has had a breast cancer recurrence--some folks seem to feel (prodded along, I'm sure, by messages in the media that make breast cancer seem like a learning experience or a rite of passage, some temporary bump in the road) that I should have been DONE with this already--didn't I get that memo? No matter how tiring it is for others, it doesn't compare to how tiring this all is for me. It's tiring because I'm ready to just walk away from all of it, but it's also tiring because...I'm tired.

Chemo gives me strange dreams; that is, it gives me strange dreams during the few hours that it allows me to sleep. For instance, after falling asleep around 8:30 last night, and then sleeping fitfully for several hours before waking at 3 AM for good, I had a dream that I was going to do the same kind of "chemo" as some NFL player...even though I didn't have the type of cancer he had and I didn't need it. His torso was covered in something that looked like nails, and the "chemo" wasn't chemo at all, it was some device that clamped like a vise to his torso and SLAM, punched in, and it was excruciating, and I know that because I had to do it for no reason and no benefit, and that dream doesn't even seem strange, come to think of it.

Chemo means that my kids know things they shouldn't, like that there is a reason their dad takes them out a few Wednesdays or Thursdays a month, because I don't want them to see me take to bed at 6 pm. My four and a half year old son asks casually at the dinner table when I have to do chemo next, and he still associates the treatment with my "breast," which he touches or kisses every once in a while "to make it better." My daughter has tantrums sometimes, which is not like her, and I blame myself, even if I shouldn't. We take them to therapy, but I'm not convinced that in this sense, being able to talk about things is the issue--it's having to witness things, having to understand things, that is the problem. These kids have had a mom with cancer almost their entire lives and I have no idea what that means for them or what that has done to them. I have a son who asks so often, what happens when we die? What were we before we were born? When we're gone, mom, what's left? No, you don't understand me...what's LEFT? My kids hear about heaven from their friends and I'm glad that Augie at least seems to think it might be real, though Lenny definitely doubts it, and I am the last person who could give them that comfort when I don't have that comfort for myself in my own head.

I know that cancer has not changed me as a mother, even though other people think that it should have done so. I have been unfriended on Facebook over my assertion that cancer does not turn you into some uber-mother and over my clear disregard for any notion of guilt that I am supposed to feel over having cancer when my kids were small. I am not a superhero, nor do my kids expect me to be one. I am still the hard-ass, I still play with them only sporadically and if it's something that I want to play (it was me, after all, who taught Augie to throw a perfect spiral; I like to play baseball with them, or gin, or something else that I would like to do anyway if they were adults); I still yell sometimes, I still get pissed when everything's a mess; I don't, God help me, do crafts; they have to eat whatever I cook; I am not as affectionate as my husband. I know that they love me and they like me and I know they wish I didn't have cancer and that I didn't have to do chemo. Perhaps they would wish for more normal childhoods if they knew any different, but on the other hand, their childhoods have been very normal in retrospect, and some suffering happening to a family does not preclude a normal upbringing. At least cancer has forced me to create some kind of legacy for my kids through this medium; I have documented my love for them in ways I could not do with my actual, not my figurative, voice.

Life is hard and it always has been; this body has been tried and tried since it was a tiny little girl and that is just the way it is for me. It might be hard having cancer, it might suck to go through 10 months of chemotherapy in your 30s, and I will always be one of those moms who had cancer for years, no matter whether I make it out of this mess alive or not, but there is this:

At least it's me--at least it's happening to me, and not to them. The fact of their physical normalcy trumps all of this, and I hope they will always have that, even if that hope is based on the stuff of daydreams. It is that thought that helps me keep walking, as if I am walking away from cancer, at the same time that I am following those I love into the future I hope I have a chance to witness.

Friday, October 18, 2013

Day 1,215: Baby Elephant Story #2

Sometimes, a baby elephant grows into a mama elephant. Right after receiving the following essay from Lulu Luke, she discovered that her fourth TNBC cancer had metastasized to her lungs. As you all know, metastatic breast cancer is incurable. Lulu is currently involved in a clinical trial for a new chemo drug that will hopefully provide benefits for Stage IV TNBC; many treatments for advanced breast cancer focus on estrogen positive cancers. Here is Lulu's story. The lines in italics are the questions that I asked her; with the exception of light editing, these are her words verbatim.

Lulu Luke

Tell me about yourself.

My name is Lynda Luke AKA Lulu. I'm a 45 year old mum to Hannah, 22, and Jamie, 19. Hannah has special needs and a mental health disorder. I work as a nurse. I actually work as a breast care nurse in screening and genetics. I started this job after my second diagnosis. I was first diagnosed in April 2006, age 37 with invasive ductal, grade 1, stage 1, breast cancer after finding a lump in my right breast. Treatment was lumpectomy and sentinel node biopsy, followed by further excision, radiotherapy and tamoxifen.

In may 2009, following my routine annual follow up mammogram, I was diagnosed with grade 3, stage Triple Neg ductal BC in my left breast. Treatment was lumpectomy and sentinel node biopsy, chemotherapy: Epirubicin x4 and CMF x4, and radiation. I had to stop tamoxifen during chemo but restarted it after this was finished.

In October, 2009, I had bloods taken for genetic testing and results came back in January 2010 that i was positive for BRCA2. In September 2010, I had a full hysterectomy with removal of my ovaries to minimise risk of ovarian cancer.

Tell me about your recent recurrence. You can tell me how you found out, how you felt, what you did, what the process entailed, or any combination of things that seem most relevant to you..

In August 2011 (a month after my 43rd birthday) after a delay of three months with my MRI scan booking being forgotten, I was diagnosed with a recurrence of grade 3 TNBC in the interpectoral lymph nodes between my pectoral muscles in the chest wall. I had a surgical excision and level 2 ANC, followed by carboplatin and taxotere chemo x6 and radiation to upper left chest wall. Both interpectoral nodes were positive; all axillary nodes were still negative. Path showed muscle involvement. Having had BC twice already plus a scare after chemo, I was actually quite calm about this diagnosis. I suppose I kinda was expecting it, as I had noticed the area getting slightly bigger. It was the same place as a scare at the end of 2009 but the biopsy I had at the time came back as fat necrosis, although the radiologist was pretty sure it was malignant at the time. So who knows?

Because of being a BRCA carrier I had an annual Mammogram and 6 months later an annual MRI. The mammo I had in November 2010 was normal apart from a cyst I had drained, so I wasn't that worried about this area, but by the time of MRI I noticed it was a little more lumpy so I made sure that bit would show up on the MRI.

When I was recalled I wasn't overly concerned at the start. But after clarifying what they had seen on the MRI the day before my ultrasound review, I went into melt down and panicked, cried, worried about the future for a couple of hours and got it out of my system. So when I went in and they wanted to biopsy it and they thought it was cancer, I was ok about it all.

Tell me what is different for you with this recurrence.

For me the second cancer was the worst. It was the one I feared the most, the one I cried about the most. The worry from the first one was cancer coming back so when I got no 2 that made it a reality. By the time no 3 came along I was like, what have I gotta do this time to get rid of the bugger. The biggest issue I had as always was telling my parents, especially my mum who had BC 15 months before my first diagnosis. She broke down after I told her about the first one, was hysterical after the second one, as I hadn't given any warning I was being investigated as I didn't want to worry her if it was nothing. On the day I had the biopsy for no 3, she and my dad went on holiday in Ireland and I was worried about her reaction if I delayed telling them until they were home, so I phoned and said the doctors were worried and I'd need a biopsy. I'd actually had the biopsy and fine needle aspiration and knew the results had shown a malignancy, but I thought that was enough info to keep them informed without spoiling their holiday completely.

Tell me how you feel about the notion of being a cancer survivor.

Personally, I hate this term. I'll only know I'm a survivor of BC when I die of something completely unrelated. In the meantime I live with BC and beyond BC. I live my life, I love my life and I don't want BC to take over my life even if does eventually take my life. However I am a self confessed BC bore. I have read lots about it. I work with BC patients, I have BC friends. But BC doesn't scare me. It doesn't stop me from doing what I want to do. It may even have encouraged me to do things I wanted and was a little afraid to do, to go places and experience things I might never have done.

I'm not one of those I'll do anything to stay alive type people. If I want a beer I'll have one, if I want a cake I'll have one. I don't deprive myself of things I like just so I can live a couple of extra months or years. I would rather live my life even if it's shorter than exist just to be on earth longer.

Tell me a little bit about how others have reacted to the news.

As I said before, my mum has been the hardest to tell. When I first found out I had cancer it was less than a year since she had finished treatment and she had been having more investigations as they were worried she had mets in her liver. Thankfully, she didn't have liver mets. When I told her on the day I was diagnosed I had BC too, she crumpled in front of me. When I got the second cancer after the first day of being in a blind panic, I'd convinced myself it was benign so again I didn't want to worry her over nothing. It wasn't benign; it was very malignant and it was my dad's birthday and when I told mum she actually was screaming... Totally screeching..... Like a banshee.... totally hysterical! She ran through the house to her bedroom and slammed the door and sat behind it crying. She was so affected by it.

When I got cancer no 3, I didn't see her reaction because she was away, but I think because I'd warned her she was actually much calmer; she was still very anxious but not hysterical this time.

Some of my friends, even my BC friends who work in a similar field, were saying it's maybe a mistake and it will be ok. I felt a little disappointed in them that they didn't just say 'sorry to hear that' or give me hugs or something similar. That whole "oh it must be wrong" makes you feel kinda not believed. Also all that brave, inspirational stuff gets spouted out yet again; I am not brave or inspirational, just doing what I have to do to get through the whole thing.

Tell me what you think it means to have cancer and what words you would like to use to define this experience.

Having cancer is rubbish. Having cancer treatment it really rubbish. Keeping on getting cancer and cancer treatment is really really really rubbish! However, along the way i have made some of the strongest friendships of my life. I have discovered who my friends really are and the strengths and weaknesses in those around me. It has led me to a field of nursing I hadn't discovered before and opened up doors to experiences I'd never have considered. I wish I never had it but I love all the things I've gained.

Tell me one or two specific anecdotes—involving people in your life, medical experiences, thoughts or dreams you have had, conversations with others, or things you have noticed in the world—that typify what this cancer recurrence means to you.

This cancer recurrence doesn't mean anything different to the previous two. Nothing special happened this time that may or may not have happened before. I just like people to know that have a recurrence that there is life after it. I feel lucky.... I know I've had BC 3 times but I was first diagnosed in 2006. I have lost so many friends who didn't make it. They never ever didn't have cancer during treatment; it progressed and took their lives leaving their kids without mothers. It makes me so sad still that my lovely friends Hazel, Michelle, Tina, Rhian aren't here. Some other lovely friends never got the chance to be mums like Sharon, Sarah, Gail and Karen. And yet more lovely girls are fighting a fight that they know they will never win like Emma, Angie, Sue, jennie, Lorna and Lynn. We go for lunch, we laugh, we cry, we drink pink fizz and cocktails and we have as much fun as we can because one day we wont be able to do that any more.

A recurrence isn't mets. A recurrence wont kill you any sooner than a primary cancer, it won't make you get mets any sooner. It's not the primary or the recurrence that gets you in the end. It's when the cancer goes elsewhere. Maybe one day they will be able to stop it from doing that.

Tell me anything else you’d like me to know.

Im a BRCA 2 carrier and although my mum had Bc at 57 only 15 months before me she is negative for the gene. I got it from my dad. My kids both have a 50:50 chance of inheriting it. If they do, this greatly increases their chances of developing certain types of cancer. I really do hope when they decide to get tested they are negative.

Wednesday, October 16, 2013

Day 1,213: 9 Lives, 9 Years

Today is my nine year wedding anniversary. I thought I had something to say about that, something profound, but I don't really. And neither does Gabe. He had started to write something, and it started like this: Sometimes you just don't know what to say.

Sometimes there are no words to express the sentiment that is in your heart.

Sometimes you do things not because you want to but because love makes you.

While there are many things about breast cancer that I never want to remember and many things about "Pinktober" I wish I never knew ("Get into bed for the cause" - really?!), I want to take this opportunity to mark our anniversary. I want to express gratitude and appreciation not just for the woman I love but also for the people who've helped us along the way. I also want to mark the dark and twisty passages we hoped we'd never revisit but find ourselves visiting now.

He wrote some other stuff that was a little confusing, even to me. He said he was too emotional this time around to be coherent in his thoughts. His final thought was this, though, and it is definitely coherent:

When I met Katy I knew I didn't want to lose her.

Here's to hoping he won't have to, at least not any time soon, and that we have many more sets of 9 years together. And also, next year, when we hit the 10 year point, I figure we might as well just have a big party and get married all over again. I will leave this short post with two thoughts. One is that if you are interested in what I think about Pinktober, outside of what I've said already, listen to this radio interview I did last night or read this story written by a friend I've known a long time.

The final thought is that when I was growing up, my mom called me Kat. I hated that nickname, but maybe it was the right one. I have lived 5 lives in these 38 years, having so far cheated death that many times. I do hope the final four allow me to go out with a bang. And you're welcome to come along for the ride.

Saturday, October 12, 2013

Day 1,209: Baby Elephant Story #1

Soon after I received the news of my cancer recurrence, I made a decision. A few weeks in, I began to realize how different this was the second time around--especially for breast cancer. There is so much hype and publicity over breast cancer, and yet it all has a vague familiarity to it--it is all about fighting and winning, kicking cancer's ass, being a warrior, hope and love and pink. So what happens when you do everything that was asked of you, and you have a few years of normalcy, and then the shit hits the fan again anyway? Well, one thing that happens is that you no longer fit neatly into society's notion of what it means to be a "cancer survivor." The whole concept of surviving gets turned on a dime; you stop thinking about cancerversaries and being done with chemo and being afraid that cancer might return and suddenly, cancer is a thing that you have to deal with on a long term basis. You start to think that cancer might never leave you alone. People treat you differently than they did the first time--there is more fear and sadness, but also more resignation and disbelief. Because of this, I decided that I would ask women who had had local recurrences (mets is a whole other story--and deserving of its own storytelling series) to send me their stories, under the guise of the Baby Elephant Project.

I named it this because I feel that we are the elephant in the room, though we are the baby elephant in comparison to the mama elephant of mets. We are the thing other survivors fear, we are the reality it is hard for our loved ones to accept. We are the ones who tried, who really, really tried, to beat cancer--but we didn't necessarily "win." I had plans to do more with this, and that is still on the agenda. Would it be a book, or a separate blog? I had grand ideas--and then reality hit me, and I was starting a new job based out of state at the same time that I was starting 6 months of chemo and my kids were starting school. One of the women who sent in some responses found out she had mets. I haven't found time to connect with everyone. This project is far from over. Today I am making a contribution to breast cancer awareness month by publishing the first in the Baby Elephant Series. Please read the story of Sharon Greene, a 4 time survivor of triple negative breast cancer. I fixed a few typos and did some formatting and light editing, but otherwise, this story is hers and hers alone, in her voice, in the way she chose to tell it in response to a handful of very simple questions that I asked of her. Thanks, Baby (elephant).

Sharon Greene

I have had triple negative breast cancer 4 times in 23 years. It has now been 25 years since my first diagnosis. Although I had BRCA testing in the 90's, my particular mutation wasn't one they were looking for. It wasn't until I was re-tested in 2011 after cancer 4 that they found the last 4 segments of my BRCA1 gene were blank or just weren't there. Since learning of my BRCA1 status, I've had my ovaries and tubes removed to lower my risks of ovarian cancer.

I read a study recently about long term survival in breast cancer patients. Most studies don't go beyond the 10 year mark. This study took a look at survival rates from 1988, the year of my first diagnosis, to the present, and only 15 percent of us are still alive. Now this study wasn't implying that all these people died of cancer. I imagine there were a number of elderly women in there who died of old age as they would have normally, even without the breast cancer. Still 15 percent survival to the 25 year mark are not the kind of stats that the pink ribbon crowd want you to see. It also made me wonder at my own fortune for being one of the 15 percent instead of one of the 85 percent.

Even though I have a family history of breast, ovarian, and 2 different types of colon cancer and even though I am BRCA1 positive with 4 triple negative breast cancers behind me, my cancers were for the most part caught relatively early. I found the first cancer myself and had I been more on the ball, I would have caught the others myself too. Instead cancers 2 – 4 were all mammogram finds. Maybe I am a poster child for the pink ribbon's early detection program after all.

The first cancer at 29 came as a complete surprise to me. Although my mother had battled breast and ovarian cancer in the decade prior to my diagnosis, she had been in her 50's both times while I was so much younger. In the pre-internet days of 1988, I brought home every library book on breast cancer I could find. It was described as a disease of older women. I did not meet or hear of any other women my own age with breast cancer. I felt isolated and very alone. Although I had a lumpectomy and not a mastectomy, I had just broken up with my long time boyfriend and couldn't imagine re-entering the dating world with half a breast. How do you casually slide that little tidbit in the conversation? I had recently graduated from law school, completed a grueling year of articles (internship for lawyers in Canada), and was now unemployed. I didn't know how I was going to explain this gap in my resume without having to tell the cancer story. I did not want to tell anyone the cancer story. I was embarrassed and ashamed to have this old lady's disease and this disfigured body. Along with the lumpectomy, they removed each and every lymph node under my left armpit. All were clear. This was followed by 6 weeks of radiation treatment that left me tired and burned. Once treatment was over, I dated a guy my age I found in a cancer support group. He was missing a testicle, I was missing half a breast. It should have been a match made in heaven. It wasn't, but he helped to make the transition back to dating again. I found employment and for the next 5 years, life went back to a kind of normalcy.

At about the 4.5 year mark, one of my mother's cancers metastasized into her liver and was incurable. She was given 6-9 months to live. About 6 weeks later, she was hospitalized for the last time. I spent the next 17 days at her bedside, watching her deteriorate day by day, but still refusing to die. I stepped out for about an hour, and she passed away when I was gone. I was devastated as we had been very close. I was an only child, estranged from my father, and felt like an orphan at 33.

I had been slowly building up a solitary drinking pattern since my first breast cancer. It accelerated after my mother's death to the point where my employers staged an intervention and sent me off to a 28 day treatment program. There I met a man trying to kick his cocaine habit. When we both graduated from treatment, we began dating. We became close early on when I broke the ankle on my driving foot and had trouble navigating around on crutches. He came over one night and never left, unofficially moving in.

I was starting to get my life back on track and about an hour before my 5th year mammogram, I was told about a new position at work. I remember leaving the meeting, saying I'd be back in an hour, as I just had a routine mammogram to attend.

There was nothing routine about this mammogram. They took pictures. Then they took more pictures. Then more and more people started entering the room to look at the pictures. A doctor came along and did a breast exam and pointed out a large mass in the same place the first cancer had been. It was pretty clear to me that the cancer was back. It was surprising to me that I had missed a lump so big but then again, it did not show up at all on the mammogram taken 6 months earlier.

Things seemed to move very fast this time around. I was told mastectomy was the only treatment option as you couldn't radiate the same breast twice. I was sent to a plastic surgeon and looked at horrifying pictures of reconstruction (plastic surgery has come a long way in 20 years). I finally decided on having my back muscle moved to form a breast with an implant added for size. At this particular time, silicone implants were banned, even for breast cancer patients. The only implants available were saline implants that rippled and created a breast shaped like a flattened pancake. It was extremely ugly. Even doctors and nurses at the Cancer Clinic suggested I go back and have it somehow fixed. The plastic surgeon seemed to think he had done a fine job and there was nothing to fix.

This had been a rollercoaster 6 month period with my mother's death in November, a stint in rehab in April, a broken ankle in May, and a cancer diagnosis in June at my 5 year "cure" appointment.

I was still mourning my mother and trying to deal with life as a newly sober person. I was in a fragile emotional state and did not want to lose my breast at 34. I cried all the way to the hospital, still wearing the cast from my broken ankle. I had the surgery with the immediate reconstruction followed by 9 months of chemotherapy. I went into the hospital depressed and came out even lower. I have been told that I continually cried out for my mother the night of my mastectomy.

Although people from work were supportive, I felt very much alone. The boyfriend was my sole day to day caregiver. The boyfriend soon showed his true colors when I got a call from the credit card company advising that my card had been used to buy hundreds of dollars worth of cigarettes during my hospitalization. As my credit card was still in my purse, it was clear the boyfriend did it. I was at such an emotionally low point in my life that I let him stay so I could have someone to "take care of me". I later learned that I was showing all the signs of severe clinical depression but it went untreated.

The chemotherapy I had caused severe mouth sores and some nausea but I didn't lose my hair. I was told that the chemo may push me into early menopause but my periods came back shortly after the treatment stopped. I was grateful that I had seemingly escaped this long term side effect. I was told by the oncologist not to get pregnant for 5 years after chemo as that might bring the cancer back. When I questioned why I had to wait 5 years when both cancers were hormone negative, I was told that my baby might not have a mommy as I might be dead. More depression followed this announcement.

I was also told that this was not a recurrence but a new primary breast cancer. They knew this as my first cancer type was medullary and the second was the more usual adenocarcinoma. The fact that both cancers were in the same spot was put down to mere coincidence.

Meanwhile on the home front, it became clear that the boyfriend had relapsed into his cocaine addiction. I remained sober for the first 2 months after the surgery and then finally broke down after my first chemo and asked to try some cocaine so I could see what the big deal was all about. I tried it and I liked it. Cocaine became a regular part of my world until the 9 months of chemo were over. At some point very early on I knew I was engaged in self destructive behavior but I really didn't care if I lived or died. Part of me wanted to die to be with my mother. Another part of me obviously wanted to live as I kept going to my chemotherapy appointments. Once it became clear that I was going to live, I kicked out the boyfriend, voluntarily went to a women's only drug treatment center, and started seeing a psychiatrist to grieve my losses. I took antidepressants to tackle my depression and feelings of anxiety. I have now been sober for 19 years and am grateful to all those who assisted me along the way. This period of my life still causes me great shame even 20 years after the fact. I think of others who did everything in their power to keep their cancer from coming back, from changing their whole diet to taking all kinds of alternative treatments, doing anything to stay alive. I on the other hand was extremely careless about my health, not even caring if the cancer took over or not. I feel guilty for all those people who died while doing everything right while I lived while doing everything wrong. When people compliment me for being so brave and courageous in fighting cancer 4 times, I just have to flashback to cancer 2 to see how utterly unheroic I really was.

I didn't stay cancer free for long. About a year after I finished chemotherapy, a mammogram found a tiny spot in the remaining right breast. It was too small to be felt and the lumpectomy had to be done after a wire was inserted in the spot shown by the mammogram. Once again, all my lymph nodes were removed and all were clear. This was again followed up by 6 weeks of radiation. When you have your lymph nodes removed on one side, you are not supposed to have needles or blood pressure cuffs on that arm for fear of lymphedema. When lymph nodes are removed from both sides, all those warnings go out the window. They don't tell you to protect both arms and use some other body part for these medical procedures. Instead you are told to use whichever arm you want and it will all be okay. Luckily for me, all was okay and I never had any symptoms of lymphedema.

With cancer 3, the people at my workplace were much less supportive than they had been before. I had barely returned to work after cancer 2 and now I was leaving again for cancer 3. Even medical personnel were taken aback when I said that it was my third breast cancer, not my first. Their reactions were a mix of disbelief, awe, and horror that someone at my age could be going through this for the third time. I had the same reaction from other breast cancer patients I met while waiting for radiation. Hearing that this was my second time having radiation and that I had a mastectomy 5 years after my first cancer, the reactions were mostly along the lines of "Wow! What a fighter!" while clutching their gowns closer to themselves and shrinking away slightly, as if they too might catch cancer again by sitting too close to me. For people facing their first cancer, I was an unpleasant reminder that it could reoccur and later spread to the other breast. By this time, the pink ribbon message was everywhere with its promises that early detection equaled cure. People like me just didn't fit in this rosy view of breast cancer, where no one dies or gets sick again once they have "survived" for 5 years and been "cured".

This time, I did have emotional support from the man who was soon to be my husband. I didn't have an emotional breakdown this time. We in fact bought a puppy once the surgery was finished, to symbolize a new long life together. The lumpectomy left a small scar but was otherwise barely noticeable. The oncologist this time said that the 5 year ban on pregnancy was no longer being followed and since I was now 36, I had better start moving on that front as I wasn't getting any younger.

We were married and tried getting pregnant the natural way without success. We were soon referred to a fertility clinic as I was concerned the chemotherapy had made me infertile. The doctors couldn't find anything wrong with me but determined that my husband's sperm quality was poor. They said our only chance of getting pregnant was by a special kind of IVF where they would pick out the very best sperm and directly implant it into my eggs. The concern arose as to what to do about giving me high doses of hormones when I had 3 bouts of breast cancer in the last 7 years. They consulted with the Cancer Clinic who basically said they had no data on someone like me using IVF. They were concerned about the hormones but could not say for certain that this treatment would lead to further cancer. We took this as a yes to go ahead with the fertility treatments.

Before we started, I was told that a woman my age was expected to produce between 12 - 18 eggs. The first time around I produced 2. The pregnancies didn't take. The second time, I produced one egg and once again didn't get pregnant. It seemed that chemotherapy did indeed impair my fertility. Although I did resume my periods after chemo, I definitely was in menopause by 45, some 10 years earlier than my mother. I am assuming from the early menopause that by the time we tried IVF, my body and my egg supply were not comparable to others my age. They were all physiologically older than my chronological age.

We next tried the adoption route. We had to do an extensive home study covering all areas of our lives, including medical history. The social worker was very concerned about my medical history and required a doctor's letter basically guaranteeing I wouldn't get cancer again. Although no doctor can make such a guarantee, my doctor came very close to promising I'd never get cancer again. Somehow we were approved for adoption and adopted a boy and then 16 months later, a girl, both from Chicago. For reasons unrelated to breast cancer, my marriage imploded when the children were 22 months and 6 months old. I have been a single mother since then. My children are now 12 and 13 years old.

For 16 years, it seemed as if the doctor's letter had indeed guaranteed my health as I stayed cancer free. In April, 2011 I went for a routine mammogram. All seemed well and I was sent on my way. 2 days later, I received a call to come in the next day for a diagnostic mammogram. I knew this wasn't routine and the old familiar dread took over. I had pictures taken and retaken until I finally said I wanted to speak to the radiologist. He came in, not once looking me in the eye, literally staring at his feet through the whole conversation. I said I'd had breast cancer 3 times before and I wanted to know if it was back again. He said there was a strong likelihood that I had cancer for the 4th time. I was sent for an ultrasound and the technician couldn't seem to find the lump. I couldn't find the lump despite being told where to find it. I went to a breast surgeon who also couldn't find the lump. The earliest she could do a biopsy was 2 months away. I couldn't wait in suspense that long so found another surgeon with a clearer schedule. The biopsy found that the tumor was deep inside my breast which was why it couldn't be felt. It was indeed cancer and I was sent off to a new plastic surgeon to consider my options.

Once again I opted for the back muscle with implant procedure. Although I had gotten my first reconstruction fixed a number of years earlier by substituting a silicone implant for the saline one, that breast was ugly again as the implant had become encapsulated. The plastic surgeon was not prepared to deal with 2 problems at once and wasn't sure if the left side could ever be fixed as he was afraid the whole breast would collapse.

In the 16 years that had passed between cancers, some things had changed a lot. Whereas with my earlier cancers it was about 2 -3 weeks from finding the lump to the time of surgery, this time it was closer to 3 long stress inducing months. And where I was once kept in the hospital for about 3 days after a lumpectomy and node removal, I was told that it would be one night with just a mastectomy and 2 nights if I also had immediate reconstruction. As the single Mom of a 10 and 11 year old and being the owner of 2 big dogs who think they are lap dogs, I panicked as to how I would cope. The doctors somehow worked it out so I spent 5 nights in the hospital which was a huge blessing.

The tumor which everyone expected to be very small, turned out to be 2.7 cm. Once again, it was triple negative, grade 3 making it the most aggressive cancer around. The pathologists disagreed as to whether this was a recurrence or a new primary. It had either been silently lurking for 16 years or it was a brand new cancer that emerged after a long remission. In the end, the treatment was the same - 4 sessions of chemo with cytoxan and docetaxol. This time, I would lose all my hair and would be sicker than with my first chemo as it was a stronger drug combination.

How did I feel about this recurrence/new primary? I felt stunned as I thought 16 cancer free years meant I was finally cured. I also felt emotionally tired from the time of the mammograms to the end of treatment. I didn't think I had the mental stamina to be a sick person for 9 months to a year for the fourth time. I was tired of cancer and just didn't want to do it anymore. Finally, it was different this time around with 2 young children to think about. My first concern was how I'd take care of them when I was sick with chemo when I had no one to take care of me. My bigger concern was what would happen to them if I died. Their father had remarried and showed little interest in them since he left the home.

We somehow muddled through these issues. I got very ill a week after my first chemo with a high temperature that resulted in a 4 day hospitalization as my white blood cells were registering zero. The ex-husband did take the kids and dogs during that period and never let me forget what a big favor he had done for me. My daughter managed to have a headache or stomach ache during all my doctor days or chemo appointments and because of her young age, accompanied me to almost all of them. She became very clingy and never wanted to leave my side. My son took the opposite route by pretending it wasn't really happening. My little chemo hats and scarves bothered him considerably. He would have been happier if I wore a wig 24 hours a day, even to bed.

I had taken the BRCA tests sometime in the late 90's when it first came out. I was found to have a variation of unknown significance but nothing that was positive for the BRCA mutations they were looking for then. With cancer 4, I was retested as more of the genes had been mapped out. I was found to have a major BRCA1 mutation, with the last 4 axons or sections of the gene blank or missing. As I was now at an increased risk of ovarian cancer, I had further preventative surgery by having my ovaries and tubes removed.

I still have not gone for the exchange surgery to finish my right breast reconstruction. I am not sure why I am dragging my feet on this one other than to say that I am not in a hurry for further surgery.

What does cancer mean to me? Its a disease I can't seem to ever be rid of although luckily it has never attacked anything but my breasts. Do I think I have seen the end of it now that I no longer have breasts or ovaries to attack? Honestly, no. My mother had 4 different types of cancers in a 12 year period. Her cancers started later than mine at the age of 50. I have been extremely fortunate so far that none of my cancers have metastasized. Will my luck hold out forever? I really doubt it. What do I feel about the term survivor? Having had breast cancer 4 times over 23 years and not dying or developing mets, I think that word fairly describes my experience. It is better than the alternatives - victim, patient, or thriver. I don't think of myself as brave or courageous, merely lucky not to have developed mets or died. I am not the poster girl for how to survive cancer long term. I didn't change my diet or take special supplements or become a marathon runner to reduce my cancer risks. I don't know why I am still alive when so many other more worthy people have died. I am a fatalist. It just wasn't my time to go I guess.

Sunday, October 6, 2013

Day 1,203: KatyDid Her 20 Year High School Reunion

So last night was my 20 year high school reunion. I went to the 10 year one, which was kind of an unmitigated disaster due to the fact that it was held at a bar in Wrigleyville the night of the infamous Cubs/Bartman game. If you don't know what I'm talking about, you aren't from here. There was basically a riot outside the bar, and all kinds of drunken aging frat boys infiltrated our reunion, so when my boyfriend of 6 months came to pick me up, he wondered if I had been chain smoking or something due to how hoarse I was from all the yelling required to talk to some people. Just a few months later, that boyfriend became my fiancee, and isn't that how time works? You just don't know what's going to happen until it happens.

This time, we met at a bar near our high school, and the music was too loud and I still sounded like a dragon lady due to the yelling, but it was a wonderful time, and it got me thinking, as things are wont to do. Now, you need to understand a few things about my high school and about what I expected with this reunion. We had 700 kids in our class. The town I grew up in borders the city of Chicago, and when I was growing up, it was like Sesame Street in there; a very diverse community with people running the gamut from living in subsidized housing to living in mansions; about half the people lived in apartments, and there were so many different kinds of kids that you could fit in somewhere no matter what.

I don't think we realized the privilege that we had growing up in such a place at that time in history, before the apartments were converted to condos, before the tiny houses sold for too much money, when we could go bowling and go to the movies and go to diners that were open 24 hours and drink endless cups of coffee and smoke cigarettes and act bored, when we could just jump on the el and go anywhere, when there were clubs on the north side that were raw and real and catered to young people, when State street was closed to traffic and you could go down there with your boyfriend and look in the windows of the department stores and buy churros y chocolate from a street vendor and call it a date, when the beaches had no lifeguards and two piece bathing suits weren't even in style. Or maybe we did know it, because I at least, I and my friends and boyfriends, sure as hell took advantage of it and had a damn good time.

Normally, I suppose people who are approaching their 20 year reunion feel some trepidation; they might wonder what to wear, worry about how they would be remembered, think about how to put their best face forward in the crowd.

Not me, not Katy. Because of this--this forum, the things I have laid bare here--I knew that I could walk into the reunion in my pajamas, straight-up bald and looking like I was at death's door, and I would have received the same number of high fives, hugs that lasted a little longer than you might expect, fist bumps and smiles. Because of this, so many people I went to high school with know things about me that I might have otherwise wanted to hide. They know I have had a mastectomy, that I am in the middle of six months of chemo for the second time, and in spite of all of that even the guys just looked me in the eye as if that was all just immaterial.

They know me, they know my husband even, and I got a lot of what I expected, and some things that took me by surprise. People told me they are praying for me. When people asked how I was doing or how I was holding up, it was hard to know if they meant the question in the normal way or the cancer way. Men I haven't seen since they were boys (and oh how the men looked different! with their beards and their baldness and the general manliness they didn't have at 17 or 18) told me I was an inspiration, that I should just keep doing what I was doing, keep soldiering on, that they enjoy, in a strange way, reading what I have to say. Women who looked remarkably the same as they did 20 years ago told me they read every word I write. People said that I look great, and I knew that meant a bunch of things, not just that I'm still in shape and don't look terribly old but that I was here, that I was alive. Someone told me "I'm glad you made it. I mean, I'm glad you made it here to the reunion, but I'm just glad you made it in every sense of the word." When Gabe walked in the room, people knew him and loved him, simply based on what they read about him here. Before the reunion, I hung out with a group of women who have supported me fully through all of this; one of them took pictures of me before I lost my hair, another was on her way to my house with a pie last weekend when I went into the emergency room. After we got home, Gabe said about them, yeah, those girls have got your back.

And it made me realize that people who haven't seen me in decades are genuinely happy that I'm not dead. It made me think about the fact that others aren't so lucky; several of my classmates have died. A boy I dated in junior high school is serving a prolonged prison sentence. Not everyone could be there; not everyone made it, in all the different senses of those words. And yet, here some of us were, sitting in a football stadium the night before the reunion, marveling at the existence of the lights and the marching band, neither of which existed when we were there, and feeling like time had passed and it had not passed. I went to that game with my whole family, and I sat next to a girl who was one of my oldest childhood friends; she lived across the street from me. I chatted for a while with a guy I went on a single date with right before we both left for college. I posed for pictures and people laughed at my loud-ass son.

At the reunion itself, I realized there were all kinds of people I didn't remember, or didn't recognize. I didn't bother to make my way through the crowd to talk to everyone, and I didn't pretend to know people I simply didn't know. And yet at times someone would say, well do you remember so and so, and I would say, of course--we went to kindergarten together, and then I would think, SHIT--kindergarten. I talked to a man who asked me what I did for a living and when I told him I study payment systems he laughed and said, well, of course, you were always crazy smart, and I'm glad you did something with that. The random memories flowed with the alcohol everyone else was drinking; I stood around in my jeans and cowboy boots nursing a single ginger ale. At a friend's house before the reunion, her husband asked why I couldn't drink and she said in full earshot of her little kids, "because of the fucking cancer." I talked with a man and his wife about our kids and where we lived and all of that and after a while he said, Katy Jacob, I will always remember you as being one of my first dates. And he started telling his wife that we went to the movies and his parents drove us there, and she thought that was adorable. I had to bring up the time when we ditched class together to go fool around in an abandoned stairwell somewhere, and we were laughing about our 9th grade hijinks. Then he said, well thank you for those memories, Katy. We weren't so hard on each other, and that was good, wasn't it?

This conversation made me think of something, which I told my husband at home. I told him about the stairwell, and how this boy undid my bra and was feeling me up and said, I hope my hands aren't too cold, and I said the following, when any normal girl would have been batting her eyelashes or playing innocent or just generally doing the normal girl stuff: "Naw man, I'd tell you if they were." As Gabe started doing the same thing with my bra and the hands, he laughed at me and said, you would say something like that--you sure as hell would. And then I said to him, what are you trying to do? Get to half of second base? To which he laughed even harder and said, damn Katy, you are still the same girl.

And that's it, isn't it? We think time has changed us, we can't imagine the youth we had then, nor the old age we hope to have later, but maybe we are all still the same, and that's why we enjoyed seeing each other so much after all these years. Maybe I'm still that girl--the one with the unruly hair, the smart and smart-ass one, the one who never really knew how a girl was supposed to behave, the one who never had an effective filter for her mouth, the one who was a goofy irreverent recovering tomboy who wrote poetry and won the writing awards. Maybe that's why there isn't a single person I went to high school with who is put off by this blog the way that some of the friends I have met in adulthood are put off; it's because I seem like myself here, the way I was then.

Thank you for the memories. That's it--that's why we are so comfortable with ourselves, and with each other, despite time and circumstance and adversity and all of it. Because we remember when we were kids, and we now know something we couldn't know then. What we know in our hearts now that was only a glimmer in our eyes then can be seen in a way in this picture of me at our graduation. We know that we should not be nostalgic for the past, but happy for the memories we have made, and we also know that we should look happily towards the future, towards the next 20 years with whatever the passing of time brings to us, because we are lucky to have that prospect of things to come, and the possibility of making more memories that are ours alone to keep.

Tuesday, October 1, 2013

Day 1,198: You Can Call Me...

Gabe's got a new nickname for me. And no, it's not G-sticks (Getaway Sticks), a nickname I've earned from a few of my girlfriends for reasons that seem kind of obvious, nor is it "Face," which Gabe has called me for years (like the dude in the A-Team, but female). So what is it, you ask? Well, I'll get there. But first I want to get something off my chest (pun intended).

It's October. I love October. It's my favorite month of the year. I chose to get married in October. October is the anniversary of my losing the ability to walk when I was 9 years old, and I will forever mark it with inappropriate leaf-kicking in other people's lawns. But October is also Breast Cancer Awareness Month. I could write something about how ridiculous it is that I could buy auto accessories with pink ribbons on them, I could write about the Saving Second Base slogans and all of that, but I did a pretty good job in my last blog post of explaining why I think it's important to get some real voices out there, lest we be lost in the din of screaming pink. Instead, I am going to use this first day of October to provide some real breast cancer awareness, about what breast cancer means for those who have it and for those who love people who have it.

I'm going to talk about what we lose to breast cancer. Because of this disease, I have lost:

my breast, and no it wasn't replaced by a better one or a bigger one or by any one at all because I just have one breast now, along with a bag of saline on which my pectoral muscle precariously sits; according to some purportedly well-meaning breast cancer awareness campaigns, this means I have also lost half of my "essence of womanhood," though that seems like a huge load of crap to me; (and look folks! the one on the left AIN'T REAL!)

my hair, all over my body, including my eyebrows and eyelashes, but most obviously I lost the hair on my head, which I had been so famous for for a quarter century that when I was in the cancer ward, a woman I knew in high school who happened to be a social worker in oncology, saw me and gasped "oh Katy, not YOU. I mean, your hair was EPIC.";

all of the axillary lymph nodes on the left side;

the ability to sleep, sweat, and cry during the first round of chemo;

the expectation of living a normal life span;


the ability to convincingly tell my children that everything will be all right, as evidenced by the fact that when we called my daughter from the hospital this past weekend, she was so upset that she refused to speak to me;

the normalcy gained by not having to constantly engage in role reversals, as my mother grieves over things that have happened to me, my older brother watches me go through things that age me beyond my years, my employers have to listen to me when I dictate how things need to be with me right now, my kids bring me breakfast in bed when I'm sick, my friends rely on me to tell them how to act around me, and my husband doesn't know what the hell to do but manages pretty well all the same;

my libido and expected sexual function during my last chemo, as well as the ear of medical professionals who did not take my problems seriously;

the normal cycles of life, having experienced menopause 15 years too early and then, soon after that, puberty 25 years too late;

the joy of breastfeeding my infant son;

the ability to have more children, since many doctors consider my cancer to be "pregnancy related," and the risks are just too great;

inclusion in this club I didn't even want to be a part of, because I have had cancer twice now, and the culture that exists even within the survivor community, which focuses on cancerversaries and being NED and fighting, does not easily apply to someone whose cancer had the gall to COME BACK, whose cancer could not be killed by chemo, radiation, staying skinny, or engaging in copious amounts of exercise;

my proud claim of having no tattoos;

the relative ease of travel, since I can't really risk the extra radiation by going through the full body scanner, so I must be subjected to patdowns each and every time;

what little patience I ever had for bullshit;

whatever filter I ever had for my mouth, along with whatever caution I used to have that stopped me from speaking my mind all the time, every time;

too much weight when I didn't have it to lose;

my immunity;

any sense of anonymity, privacy or modesty that I might have had, as people feel free to judge me by every bite of food I eat or activity I engage in, while the whole entirety of humanity seems to have felt my breasts, and people I have never met believe they know how it is for me;

my sense of nostalgia, because the things I pine for are the things that haven't happened yet;

the expectation that I will live to see my children grow up, that I will grow old with my husband; even if these things come to pass, the EXPECTATION of them is gone;

my sadness, grief and fear over having had cancer.

All of these things are gone.

This is not to say that I am a broken person who has been beaten down by cancer--not at all. Speaking these truths does not mean I am negative, or depressed, or bitter; it simply means I can take stock realistically and still keep walking. Like all people who live with adverse circumstances, like all people who live with suffering right alongside the corn flakes they eat in the morning, I am still myself. I am still a relatively smart, resourceful, talented, fit,happy, goofy, sexual, irreverent, pissed off, attractive person, on whatever scale there is that measures those things. Cancer has taken some things, but not the most important things. Cancer has also given me some things--like nicknames.

My husband has taken to calling me Bourne. Why, you may ask? Is it because I am some no-nonsense, indestructible cancer slayer who takes no prisoners and takes even less shit?

No, unfortunately that's not the reason. He calls me that sometimes because of that scene in the Bourne Identity, when the two assassins are sent to kill each other, and they are engaging in a fight that neither of them understands, though they both know that they are different people than they were before the battle began, and they also both know that they will both lose to some degree in the end, regardless of who is left standing. He calls me that because at that crucial moment, the unnamed assassin looks at Jason Bourne with that sad, ageless gleam in his eye and says:

Look at us...Look at what they make you give.