It’s one week. The week after I have completed radiation, in which someone asks, ‘are you done with treatment?’ I reply yes. They look back at me with such elation, ‘yay! Congrats!’ I force a smile each and every time and say thanks. I sometimes even pump my arms in the air in confidence in case they don’t buy my smile as genuine. It gets harder as each additional person congratulates me. But no matter what, I can’t help the loneliness I feel inside. I mean, I know I’m not alone. I’ve got an amazing partner, incredible friends, unconditional loving family, and co-workers who have my back. But for this week after I have ended treatment, I feel more depressed than I ever have in my entire life, including when I found out that I had cancer. Ridiculous, right? And then feeling like it is ridiculous probably makes me feel more depressed. I had tried so hard throughout all of treatment to stay out of my head. I’d allow myself time to grieve, and feel whatever emotions I had, but I’d force myself to jump right back into my routine. Only now that treatment is over, there is no more routine. No activity that actually says I’m taking care of this cancer thing right now. So if I’m not doing anything to rid my body, what am I doing exactly? Just sitting and waiting for my body to heal. And even then, what? In my experience, people are unable to feel when they have to focus on surviving. It’s once their body determines that they are safe that they start to get all the feelings attached to that experience.’ Well that explains it …sort of. It’s the first time I feel true depression. My body aches and feels as if I’m an eighty year old woman. I sit for ten minutes and go to stand, but my hips and knees refuse to catch up. So as my body is supposed to be healing it actually feels like its falling apart more now than ever before. The only yoga I can take right now is filled with older women, and is, no offense to those there, but too geriatric for me. I need something to kick me in the ass. My gardening helps but still isn’t enough.
It’s overwhelming. To see that you’ve gotten to the end of treatment, it’s overwhelming. There’s a sense of accomplishment, and why not? Mammograms, biopsies, scans, MRIs, exams, surgery, chemotherapy, radiation, and drugs. All for what? To be called cancer free. To be called a cancer survivor. A label I never thought in my wildest dreams that I’d be named. You mean, it’s not something you wish to be? It’s not a part of some fifth grade essay of what you want to be when grow up? It’s definitely not something you can choose to have. It’s not contagious. You can’t prevent it by washing hands. You can try to hold it off by not smoking , by eating well, or even by not using some plastics. But really? There are people who never smoked a day in their life and die from lung cancer. There are health nuts who eat only vitamins a, c and e, and still get colon cancer. Even after I tested negative for the cancer gene (the one and only genetic test created for cancer), despite all of the cancer in my family (see blog post EVERYONE KNOWS CANCER), they actually tell me it’s ‘just dumb luck.’ Well, you know what I say to that? Dumb luck, you’re fucking mean! Isn’t luck supposed to be a good thing? So if it’s not a good thing don’t call it luck at all. I always hear the ‘good’ kind of cancer, and I tune out which is which because no matter which one it all sucks!
So to end the treatment process is simply overwhelming. I’m done in the eyes of the medical industry, and everyone else for that matter. But in the back of my mind, I always hear the whisper, ‘for now.’ I know there are survivors out there, some for decades, and some even close friends. But the fear is there. That once this is in you, it’s in you, like some stagnant egg from alien waiting to ignite. Ending treatment is supposed to feel like a good thing, but when the doctors can’t give you a guarantee that you’re cured, a part of you feels as if it was all for nothing. I want to be told that I’m officially cancer free. I want to be told that after the 5 hour bilateral mastectomy, four and a half months of chemotherapy, six weeks of radiation and now five years of pill popping, the professionals that I’m in debt to (literally, now reaching over $40k – the blog is coming called ‘the costs of cancer,’ don’t you worry)… I want to be told that the professionals did their job. And since they can’t I don’t feel I can call myself cancer free, or a cancer survivor. It may seem trivial, but it’s true. I see the faces of those that fought and didn’t make it. I imagine what it was like for them to be told that the cancer came back. I specifically see my father’s cousin. I met her once when I was very young, before the cancer. She was beautiful, fun and happy. Like me, she had breast cancer at the age of 36. Like me, she had two kids. Like me, she thought she was ‘cancer free.’ Unfortunately, she was remission for five years before it came back with a vengeance. After fighting for another five years, she died from breast and spinal cancer at the age of 46, ten years after she was first diagnosed.
I am grateful, don’t get me wrong. I have the most amazing husband, who is an incredible father to our two beautiful girls. I have a family that will lay down their life for me. I have friends near and far that would be at my beckoning call should I need anything. I have a boss that doesn’t ask any questions. I have a job that I love and keeps me out of my head. I have much more than most. I know that. I know that the energy I’ve put into fighting this shit has been worth it. I just want to make sure that it’s been enough, because if it’s not, I’ll keep going. For as long as I have to, I’ll keep going. I’ll keep going for all that I have and don’t have.
Nearing the Finish Line April 13, 2012
I have 2 radiation treatments left and as I went in today for my 28th and saw women and men still with many remaining, I do feel grateful that I’ve gotten this far. I actually had to wait a while, for before me was a woman starting her first. I’ve seen several others on the street, around the hospital as I come and go and we smile and acknowledge one another as if we’re a part of a secret club. Before treatment, I probably would have never thought about how we could possibly be connected, but how can I not now?
Over the weekend, my skin will have time to recover and heal before I come back for the final two. I think I’ll start making a list of all the things I’ll want to do as soon as the skin heals. I can take bathes again. I can wear deodorant (stuff that actually works), wear lotions that smell, use my French bath wash. I’ll be able to let my girls climb all over me without worrying that they’ll hurt me. I’ll be able to give hugs with my right side again, and not just awkwardly lean in with my left. And as soon as the skin heals, I can wear normal clothes again. I’ve ruined about 10 shirts because I’ve worn them over and over. I can only wear soft shirts that don’t rub up and irritate my armpit area, but can still be ruined by the vaseline type lotion that I have to apply now nearly four to five times a day.
I didn’t start to feel pain or any uncomfortable irritation until I had about5 treatments left. But it was enough. Imagine a sunburn in your armpit. And it’s not like a normal sunburn, it’s a weird darker, skin transformation that is hot to the touch. I definitely can’t wear any bags or straps over my shoulder. Can’t wear any tight clothing that will irritate the skin. And since my mornings are spent at the hospital, I can’t travel outside New York for work. I’m a hostage to my own disease.
But come Tuesday, it’ll all be over. I’ll get back on tamoxifen, the estrogen blocker that shrinks tumors, and stay on that for the next five years. I’ll have follow-ups with each doctor in the next coming months. I’ll have a full pet scan, at my own demand, to ensure the cancer is gone. Then I’ll have my exchange surgery, sometime at the end of July or beginning of August.
The road of battle isn’t over, but continues. At least I can start getting back to normal, or at least what normal will become for me. Much love to you all.
EVERYONE KNOWS CANCER April 11, 2012
When people ask how the girls are dealing with mommy having cancer, I simply say, ‘Great,’ which is true. They are getting through this, I feel, solely because they’ve been able to see that cancer isn’t a death sentence, or ‘DOOM’ as they’re learning from the Ewok movies. The response is often, ‘well, it’s not.’ My reply every time is that it IS for some. I don’t want my experience or what I say to demean anyone’s story. We are all different, unique individuals that unfortunately (and at the same time fortunately) travel through separate journeys in life. Even though I may have the exact same disease as some, how our bodies react to treatment may not be the same. This disease comes in MANY different forms. It doesn’t care if you’re a woman or a man. It doesn’t care if you’re white, Hispanic or black. It even doesn’t care how old you are.
We have all had cancer in our lives, whether it be a family member, friend, co-worker, or self. Tell me one person that doesn’t know ANYONE who’s had cancer and I’ll give them the luckiest person in the world award. And if I’m your first, I’d love to give you a bear hug and apologize for breaking your cancer virginity. For everyone else, try listing all of the individuals in your life that have been affected by cancer. When you come from a large family, it’s inevitable that someone will have cancer. For me, because of my gene testing, the list is long, and I’m able to go back to my ‘great’ relatives. How, after all of this, I still DON’T have a cancer gene, I may never know. So I start with those that have passed away:
- Joseph Macaluso (maternal grandfather) – 8 years remission from kidney cancer, died of kidney and colon cancer at age 83
- Ada Brown (paternal grandmother) – died 49 from subdural hematoma while battling breast and lung cancer
- Elvis Brown (paternal grandfather) – died at 62 from throat cancer
- Rosemary (maternal great aunt) – died at 48 from ovarian cancer
- Blanche (paternal great aunt) – died at 54 from breast cancer
- Gertrude (paternal great aunt) – died at 58 from breast cancer
- Mom’s first cousin- died mid 50’s from throat cancer
- Edith (paternal great aunt) – 35 years remission breast cancer, died of a heart attack
- William (paternal great uncle) – died at 71 from mouth cancer
- Billie Joe (paternal first cousin) – breast cancer at 36, remission until 41, died at 46 from breast and spinal cancer
- Anna (maternal great aunt) – 17 years remission breast cancer until 78, died of a bad heart
- Mike Rokich (Husband’s grandfather) – died 1999 of prostate cancer
Friends, co-workers and loved ones outside of family that have passed:
- Michelle – college classmate, died in 2004 at the age of 29 of colon cancer
- Edgar – childhood friend and high school classmate, died 2005 at age 29 of Lymphoma
- John – high school friend, survived testicular and brain cancer, died 2007 at the age of 31 of lung cancer
- Anne – Husband’s co-worker, died Jan2012 of lung and brain cancer
- Judy – dear friend, died Jan 2012 at age of 67 of ovarian cancer
- Kelly – college accompanist, died March 2012 of Intestinal Cancer
On that somber note, you’d think that we’d feel completely powerless. Then think about survivors you know:
- Dolly (maternal great aunt) – 6 year survivor colon cancer, currently 90
- Kathleen (mom’s twin sister) – 13 year survivor breast cancer
- Barbara (business associate) – 12 year survivor brain cancer
- Steve (Husband’s uncle) – 3 year survivor prostate cancer
- Tiffany (college friend) – 16 year survivor ovarian cancer
- Brianna (college friend) – 8 year survivor Metastatic Thyroid Cancer
- Amanda (college friend) – 7 year survivor Stage IIB Hodgkin’s Lymphoma (diagnosed while 34 weeks pregnant)
- Grace (daughter of high school friends, 12 years old) – 6 year survivor of brain cancer
- Anna (friend of the twins, 5 years old) – 3 year survivor of brain cancer
Now, think about those currently fighting:
- I count myself – 36 years old
- Joyce (father’s sister-in-law) – breast cancer
- Jamie (4th cousin, cuz in Louisiana you know them) – thyroid cancer
- Brett (college mentor and advisor) – prostate cancer
- David (business associate) – terminal blood cancer
- Libby – 6 years old battling kidney cancer
And this is just what I remember. I know there are others that I’m leaving off – a friend’s mother, someone’s sibling, and more. To that, I send my deepest apologies. It’s a disease that affects everyone. You just never know in what capacity. They could have survived, been a caretaker, seen a loved one die, or watch a child battle through. So since I look like cancer, I’m more aware. When I catch someone’s glance, I have to force myself to smile. I never know what cancer has done to them. I know I’m getting through this, but I’ve seen dozens in the hospital struggling, wondering how many times they’ve been there before. Wondering if I’ll return.
I go home each day, passing my neighbors, a Puerto Rican family that has lived with cancer for decades. The youngest in the family is a bright fourteen year old girl with a beautiful smile. I’ve seen her grow from a lively six year old into a young lady, all the while never knowing just how she has been affected by cancer until I was diagnosed. She’s seen her grandfather and uncle die from it. She’s seen her grandmother, whom she lives with, go through two remissions. Now, she’s witnessing her aunt, who has gone through three remissions, die from it. The aunt has had to move in with the family, and sleeps in the same room with her. During the day she sees me living through it as if it’s no big deal, and at night she witnesses her aunt painfully fading away because of it.
Then I hear of the kids. Little Anna was 18 months old when she was diagnosed with brain cancer. But now looking at her, the spirited 5 year old that she is, you would never guess. Jennifer, Anna’s mom, has become a dear friend. Anna has to return to the hospital often for scans and follow-ups. Even though her treatment was at such a young age, she is starting to form memories of it all, seeing other kids living through their various diagnoses and treatments.
And dear Libby, battling at this moment. Six years old, 2 major surgeries in a week and months of treatment. A six year old should be learning how to jump rope, scale the monkey bars or even get lost in a book, NOT develop a fear of life vs. death. It’s not fair. I know all of the adages: “What doesn’t kill us, makes us stronger.” “This too shall pass.” “It could always be worse.” In the end, it still simply sucks. Sucks that this happens to anyone, let alone a child, in any capacity.
So when there’s nothing to say, when no words can express the confusion or anger, when all you want to do is just beat the crap out of something, we’re still left with cancer. We’re still left with a disease that robs us of time, happiness, memories and loved ones, even as a survivor you’re robbed of the energy spent fighting. Coming out of it, there is only perspective. You look at things differently. You make sure that at no point do you have any regrets. And not that you may feel an Ewok DOOM, but that you make sure you’ve taken advantage of every opportunity before you. Because in the end, yes, it could always be worse. But wouldn’t the saying be better received if it were “it could always be better.” and it actually was?
Prepping My Twins April 4, 2012
Prepping My Twins
My husband and I always said that we would talk frankly to our girls. That, despite the fact that some think kids must be protected, we armored ourselves with the mindset that the more they knew, the more they understood, the less likely they’d be scared or confused within any set of circumstances. So when I found out I had cancer, we both looked at each other as if we were in a western duel waiting for the other to draw their weapon. How do you talk two three olds about cancer? Well, you just blurt it out.
We’re at dinner, and after the two of us finish our meals and the girls are still working on theirs, we decide it’s time. “Girls,” I say, “Mommy is sick.” “Oh no, Mommy, are you ok?” asked the ever concerned Penelope. “Well, I will be. I found a bump on my breast and the doctors tell me that it’s cancer.” “What’s cancer?” asks Sophia. “It’s when a group of abnormal cells start to take over the space of good ones, and they continue to grow…” starts Graham. I look at him as if to say, “Really, we’re going to go into it like this?” Graham shrugs with the “how else do you describe it?” look. By the time we turn back to try again, we’ve already lost their attention and the moment has passed, as they start talking about poop and boogers. I find comfort in the fact that they’re only three and can’t quite grasp the concept of what is happening, that they can understand the simplest of terms which will take place but can’t quite comprehend the full scale of what’s at risk.
As I prepare for my surgery, the weeks leading up to it, I tell the girls a story, that I keep repeating as often as I can and definitely any time they ask. “…..not sure how, and don’t know when, but at some time there was a sickness that got into mommy’s breast. I felt a lump there that I knew shouldn’t have been. I went to the doctor where they took a picture of it. They told me I was right, that it shouldn’t be there. To make sure, they inserted a needle and pulled out a small piece to test it. That’s when they knew it was cancer and that I need to have it taken out immediately so that it doesn’t spread to any other part of my body. So in order to take it out they need to take off my breast, and because I don’t want to ever have to go through any of this again, I told them to take the other as well. But don’t worry, they’re going to give me new boobies. However, after the surgery, you’ll have to be very, VERY gentle with mommy. I won’t be able to do a lot of things that I normally do, so Grandma is going to visit to help out, and some of mommy’s friends are going to cook dinners for us to make sure we have enough food. I won’t be able to pick you up. You won’t be able to sit on my lap. I can’t have you climb into bed with me. Grandma will bathe you and brush your teeth. But this will only be for a few weeks. So a way for us to prepare for this is to make some changes now. Instead of me picking you up to get onto the counter for teeth brushing, you can climb up on your own. Instead of me leaning over the tub to wash, you can stand up. And for rocking to sleep, let’s see if it’s comfortable to put a pillow between us.” Of course after the surgery, it was all about looking at my scars and telling them my boob story. So I revise and repeat. Over and over again, so much that they start to retell the story back to me and even draw pictures of my breasts.
The process is repeated all over again when chemo starts and for each and every treatment. But this time we talk about how the medicine I take will make me very tired and very soar but only for a few days, and that most importantly it will make my hair fall out. For the first treatment they do really well. Before my second treatment, 3 weeks in, my hair drastically starts to fall out. Graham and I are in the middle of technical rehearsals for a solo festival – 21 shows in 10 days. My in-laws are kind enough to take the girls until Saturday. It’s Friday and opening night. I’m in the shower washing my hair. As I start to run my fingers through to rinse, my hair comes out in sheets in my hands. I take a deep breathe, rinse off, dry and gently seal my hair to my head with the last of my gel. I get through the work day, through the opening night, and at the party, for fun, show a couple of friends, who are in disbelief. (apologies to the busboy at RESTAURANT NAME for the clump of hair under the table!) Fast forward to the next afternoon, after I arrive home with the girls. They don’t believe me either, so even though I want to wait to shave it for Graham to be home and Elizabeth to videotape, I sit on the tub’s edge and tell them to run their fingers through and pull gently. They are in shock but more of amazement than fear. And for some sick reason they’re enjoying it – they are my children after all. I have to make them stop or there won’t be any left to shave!
The next morning, daddy’s home. It’s blueberry pancakes, Penelope Pitstop, and cleaning up before Elizabeth arrives to videotape the shaving of the head. Because she too doesn’t believe me, I pull out a clump and within minutes she has the camera recording. Best friend, Scotte arrives and as we set up in the bedroom, the girls are running around giddy, anxious to get the clippers to my scalp. But after a couple of strokes they’re bored and leave the rest for Scotte and I. They come in and out of the room, getting quick visual updates, but all in all, they have no problem adjusting. And that’s how it’s been ever since.
For each treatment, we give them a couple of days warning and several reminders, so that when the change happens, they’re not taken by surprise. They may forget in simple moments, but they soon remember. They’re told, “Sweetie, mommy can’t do that. She just had chemotherapy.” or “Mommy’s tired right now. Why don’t read you a story?” The biggest adaption for them is the fact that I can’t be near them if they are sick, and boy were they ever sick! Snotty noses, coughs, fevers. If my body temperature would even near 100 degrees, I’d have to go straight to the emergency room. But as a mom, I can’t just sit back and watch. So, very carefully I risk it. We all wash hands, cover mouths (as much as you can make a 3 year old cover her mouth), don’t drink after one another, don’t share food, wash clothes often. And in the end? The three of them sick 3-4 times each throughout the winter, and me? None.
That doesn’t mean that the girls don’t try. Occasionally, I’d hear, “I’m too tired. I had my chemotherapy today.” Which I NEVER let slide, that is after all, my line. But because the girls are so accustomed to talking about it, they also draw it. I have plenty of pictures with BALD mommy, or family portraits with a BALD mommy. And when explaining it to their teacher or school friends, they say without hesitation, “My mommy is bald because of the chemotherapy curing her cancer.” As if it were just that simple, but to them it is, as it should be. I see adults do a double take, and look at me with a bit of alarm. Several months after radiation, as my hair struggles to grow back, and hot flashes make it difficult to keep the skull cap on my head, I get more questions from area parents that ‘heard’ about my condition.
So now it’s all about my radiation which actually has by little effect on them. The only time it’s an issue is in the morning. There we days before any of this ordeal when I’d try to sneak out by 7:30, to go unheard, in order for them to sleep a little more and give daddy a little more rest. And whenever I couldn’t I’d delay for 15-30 minutes to spend a bit morning tie with my girls. But when for 30 straight weekdays you absolutely can’t be late, it’s difficult. I imagine it to folks who live in the suburbs and must catch that specific train into the city or the rest of their day will be forever screwed up. Lesson? Don’t live in the suburbs! So when I’m minutes away from getting out the door, and I hear their bedroom door creak open, I sigh. “Mommy, I want to get up and eat breakfast with you.” “Penelope, I’m sorry but Mommy has to get to the hospital for radiation.” “Not again. I hate radiation” “Honey, we don’t use that word. But you’re right, I don’t always like it either. But I’ve only got 16 left to go!” But to her I might as well have said a thousand. I quiet her down then talk her into eating an oatmeal bar, and wait for Daddy to wake up.
I know the girls have gotten through all of this remarkably well. I know that I’ve put an image into their minds that cancer doesn’t equal death, that when you are aware, take action and keep things in perspective, you have a chance doing anything.