There is a sound. It’s not quite a sonic boom but it’s fast and forceful. The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring. The camera cuts to me, standing in shock. As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments. As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours. Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief. A release. That all is well again.
This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping. I have suffered from persistent and stubborn cording for almost three years now. And I do mean “suffered.” While I have had excellent range of motion, the cords have been extremely painful. Especially my armpit. Every time I lifted my arm, it was a tight, stretching pain. I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers. Does that make your skin crawl? Well, it’s not pleasant. But it was my normal. I actually got used to being in discomfort.
For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy. One can develop rope or string like structures in your arm. This can inhibit range of motion and be quite painful. It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand). It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy. Read more about axillary web syndrome here.
But I stretched. I stretched every day. I went to therapy once or twice a week. We pulled the cord. We massaged the cord. We dug into the cord. We sang to the cord. We breathed deeply into the cord. And we definitely begged the cord. And each time, nothing. It would not move. It was intent on staying exactly where it was.
Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office. I do this a lot in hopes that it will do something. It never does. But last week, out of nowhere I felt the most gentle pop. It wasn’t even a pop. It was an effervescence. And suddenly, in the area where I was experiencing the most pain, the pain was gone. There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.
Had I done it? Had I achieved the impossible? I went to be in disbelief, thinking I might have given it a good stretch. But when I woke up, it was still gone. I did it. “I got you, you fucker!!!!!!”
I had won the battle but not the war. There were still more cords. I still stretched every day. One day I felt a pop in my wrist by my thumb. I could always feel several cords there. The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb). When I went to feel the cord, it was gone. GONE!!!!!!
Then the other day, I was stretching again, and there was a thin cord. Thin but mighty. It caused a sharp pain every time I touched it. But I was used to that pain. I pulled it. I tugged it, I dug under it and pulled it up. Nothing.
But when I woke up in the morning, it was gone. GONE!!!!! Another one bites the dust!
I always imagined that when these cords went away, that there would be tears of relief. But, the snap was so subtle and undramatic, that I didn’t know what to make of it. With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.
I know that there are still more cords that I need to snap. I can feel them and they are deep in my arm. Really deep. But I don’t feel hopeless anymore. I know that I will get them one day. My cords might be stubborn but so am I.
Did you have cording?
How long did it take for your cords to snap, if they did at all?
Do you have any magic tricks to make them disappear?
A photo taken of one of my cords. Please excuse my hairy armpits, lol! It was winter and I couldn’t be bothered.
Hello fellow bloggers. It’s been a lazy summer, at least for blogging. I haven’t been around much to write or read. I’m hoping to change that soon. I’m not working too much but with the work I do have, I’m pretty busy with prep so, by the time I’m done, I still have all of my home stuff and exercise to do. It’s not leaving room for other things like writing. But I’m making time now.
I’d like to start with the blogging challenge from Nancy’s Point, one of my favorite breast cancer blogs. Last year I wrote random facts about myself so I will try to be innovative. I’m pretty much an open book. But, here it goes.
I have a dent in my head because of a freak zip lining accident I had in Costa Rica. The guide forgot to put the brake out for me and I hit a tree. I needed stitches which I got in a shack in the jungle. It was the first time I ever tried something adventurous and the last.
My husband and I decided to try to have a baby while folding laundry in a 24 hour laundromat. I always wanted children when I was young but after grad school, I wasn’t sure. I’m glad we made the choice to try because 3 months later, I was pregnant with Oliver.
I hoped for a natural birth; no drugs, no IV, with a whirlpool tub and candlelight. What I got was a completely medicalized birth. My blood pressure skyrocketed 2 weeks before delivering and my organs started freaking out. Oliver was 16 days late so I had 5 methods of induction. The nurses were all over me constantly. After 23 hours of trying, I finally gave in and got an epidural. Three hours later, I had a c-section. Totally not the experience I hoped for. One of the things that makes me sad is that I’ll never know what it is like to deliver naturally.
I don’t own a home but desperately want to.
I have never lived outside of New York City. I even went to college here. If I could move anywhere, I’d love to live in Portland, Oregon.
I hated Lord of the Rings. The movie. While beautiful, it bored me to tears. I think I’m the only one who feels this way.
I love fresh, baked chocolate chip cookies and can eat the whole cookie tray in one sitting.
I’m envious of people who get to travel globally for work and wish I got to travel much more.
I’m like a sponge for other people’s emotions. If someone is in pain, depressed, excited, I immediately pick up on in and take on that emotion. I can easily put myself in someone else’s shoes.
I want to be a zombie on The Walking Dead.
If I could have an affair with any star, past or present, it would be Gene Kelly. I love everything about him.
I get motion sick very easily. The worst is on boats. I won’t go on a boat in choppy water.
I’m sickened by the state of the world right now. I don’t know how humans can treat each other with such disdain and disrespect. I look at pictures of Syrian, Afghani, Iraqi refugees and I feel so uncontrollably desperate to save them. I know that is not possible.
When I’m stressed out, I need to cry before I can find a solution.
I can’t dance. Seriously. My top half and bottom half won’t coordinate. But in my mind, I’ve got rhythm and grace.
BONUS: I love farmer’s markets. They are my happy place. I can’t get enough of all the fresh produce. I think it’s beautiful.
Now for some of the stupid, breast cancer related shit I’ve been dealing with. For the last (almost) 2 years, I’ve heard and read about women complaining about treatment related weight gain, whether it be from chemotherapy or tamoxifen or other drugs. I’ve considered myself among the lucky. I managed to lose a little bit of weight during chemo (not much and it was because everything tasted gross) and, even on tamoxifen, I managed to drop one size last summer due to exercise and healthy eating. After my DIEP Flap reconstruction this year, I decided to be a little lax with my food choices. That, mixed with not moving around much led to some weight gain. I knew that was going to happen but I figured I’d deal with it when I recovered. What I didn’t take into account or realize was that my new medication, Zoladex, could also play a role in weight gain.
When I tried my summer clothes on this spring and realized just how much weight I truly gained, I decided to take my health very seriously. I began exercising 4-6 times a week, eating smaller portions and eating more fruits and vegetables. I figured that, by mid-summer, if I kept this up, I’d be back to my previous weight and down some more. After 2 months of consistent exercise and healthy eating, I didn’t notice too much change in my body so, I decided to weigh myself again. Not only had I not lost weight, I had gained 6 pounds.
WTF!!!!!?????!!!!
Let me tell you what upsets me about this. Aside from my feelings about my physical appearance (which I do not like right now), I’m really pissed about my lack of control. You see, I hate running. I hate it! But it’s all I really have the time and money for. It’s free and I can be outside. But I hate doing it. What I loved about it was that I felt like I was taking control of my health. When it comes to breast cancer, there is so little we have control over so when I can control something, I feel omnipotent. So, to find out that I have been working so hard and that it has yielded no results, well, I lost my shit.
As my therapist commented, “it’s a bitch and a half.” To work at something day after day. Something that all the books and magazines PROMISE will get you results. But I am the fucking exception to the rule. Hard work is not rewarded when you’re on an ovarian suppressor or dealing with other breast cancer treatment.
It never ceases to amaze me. That no matter how far I get from my diagnosis date, breast cancer still creeps up in my life to remind me who is boss. It reminds me that life really isn’t in my control. It reminds me that my body no longer belongs to me. That no matter how hard I try, it will never be mine again.
Sometimes I think back at the time I was diagnosed with breast cancer almost two years ago. I remember the overwhelming feeling of dread. I remember them talking to me, using technical terms almost on the spot, as if I knew everything they were talking about. I quickly found out that everything that I knew, or thought I knew about breast cancer was either false, drastically incomplete information, or completely new to me.
If you are newly diagnosed with breast cancer and reading this, you might be in the same place that I was; reeling from the news, inundated with information and juggling what you know or thought you knew about breast cancer with all of the information from you doctor, your friends, family and the internet. I get it. I was where you are now. So, here is a list of all of the things I thought I knew about breast cancer before I got breast cancer. Please be aware, I have done my best to back up my information with facts from reputable sources such as breastcancer.org. All opinions are based on my personal experiences with breast cancer. Nothing here should replace the professional opinion of your medical team. I’m not a doctor. I don’t ever want to be a doctor so do not ever take this in place of medical advice.But if it helps you spark a conversation with your doctor, great!!!
Breast cancer is different from other cancers. Before breast cancer, I thought all cancers were pretty much the same but in different locations in the body. I did not understand that all cancers are unique and depending on the type that you have, needs to be treated in different ways.
To that end, every breast cancer is different. I did not understand that every breast cancer, just like every snowflake and every fingerprint is unique. All breast cancers start from the cells of healthy tissue and in those cells are genes which tell the cell what to do. The genes are made up of DNA. Sometimes, DNA can change or be damaged. Sometimes there is an outside cause for this and sometimes shit just happens for no reason at all. Sometimes these changes are harmless. Sometimes not and when the DNA in the abnormal cells tell that cell to keep reproducing and rapid rates, you have a tumor. And as they reproduce, they grow more and more different from the healthy tissue and each other. According to breastcancer.org, “by the time a breast cancer tumor is one centimeter (less than half an inch), the millions of cells that make up the lump are very different from each other. And each cancer has its own genetic identity, or fingerprint, created by the DNA in its cells. So two people with breast cancer who are the same age, height, weight, and ethnicity, and who have similar medical histories, almost surely have two very different cancers.”
To that end, every cancer needs to be treated differently. Cancer cells and their pathology can be vastly different. What might work on one type of cancer cell to kill it might not work on another. That is why we get all these tests on our tumors with reports that are almost impossible to understand. Options for treatment include, lumpectomy, mastectomy, chemotherapy, radiation, herceptin, hormone therapy and other targeted therapies.
When you get breast cancer, you need to find a breast oncologist. I remember when I was sitting with my oncologist, Dr. Jevahri one day. I asked her what other cancers she treated. She looked at me perplexed and said, “Just breast cancer! It is my passion!” It was then that I learned that oncologists have specialties. This confusion was tied to the lack of knowledge that all cancers are different. I thought all cancers were the same and an oncologist treated cancer. But that is not the case at all. Most specialize in one type of cancer or related cancers. So, when you are researching oncologists, you need to look into those that specialize in breast cancer.
There might be options for treatments and surgery. I wasn’t given too many options when it came to my surgery and treatment. I heard from two doctors that I would need a mastectomy, followed by chemotherapy and then radiation. But some women are told that they need chemotherapy first and then the mastectomy or lumpectomy. Some need a lumpectomy and then radiation but no chemotherapy. It’s worth asking your medical team which one they are recommending and why. I wish I would have known that women have chemo first and then surgery. I’m not saying I could have or should have gone that route but it would have been nice to ask why that wasn’t being recommended for me.
It’s normal, and even expected that you will get a second or third opinion. Cancer is a serious thing. Everyone knows it. That’s why it’s expected and even customary to get a second opinion to confirm diagnosis and to get another opinion about treatment. Some insurances even require it. I think it’s good to get a second opinion because it can either confirm what another doctor has recommended (this is what happened for me and it gave me peace of mind) or maybe you will be given an alternative that sounds more appealing or fits your lifestyle better. I haven’t met a doctor yet that has gotten upset or offended when I said that I wanted a second, third or even fourth opinion. In fact, I found that I was more respected for doing my research and making informed decisions. Don’t be afraid to do the same.
I thought chemotherapy would make me sick as a dog and I’d be throwing up every day. I was deeply afraid of chemotherapy. I imagined the months I was on it spent in the bathroom over the toilet bowl. The idea frightened me more than you can imagine. But that was not what happened to me. In fact, I never even got nauseous on chemo. Maybe it was all of the pre-meds that they gave me. Maybe chemo never would have effected me that way. I don’t know. But I also know that if I did get sick, I had a arsenal of anti-nausea medication at my disposal to use at any time. That was a comfort. Other people do have adverse reactions like nausea to chemo, I was just one of the lucky ones.
I had no idea just how many clinical trials there were. One thing I asked about right off the bat were trials I might qualify for. I am lucky that I was treated in a cancer center that is a center for excellence and actively participates in major clinical trials. Hopefully, my involvement in two clinical trials will help me in preventing recurrence so I can live a long life see my son grow up. You can see what trials are happening right now by going to this link.
You don’t need to just know the stage of your cancer but also the grade. When we are diagnosed, we immediately want to know what stage we have. The stage gives us a lot of information, mostly if the cancer is treatable or terminal. Important stuff. But also important is the grade. The grade tells us how different the cancer cells are from the normal healthy breast cells. It also tells us how quickly they grow. Your grade also effects your treatment plan.
Once you are diagnosed, decisions are made quickly about your care. I was floored by how quickly things moved once I was diagnosed. Maybe it’s because I’m young. Maybe it’s because my tumor was aggressive. I don’t know. But decisions about my care were made super quickly and this was extremely overwhelming. Be prepared for this to happen.
Chemo can affect your ability to have children in the future. Chemo kills cells, both healthy and unhealthy ones. It also has adverse affects on your eggs and ovaries. I was told by my oncologist that chemo would age my ovaries by 10 years! Yikes!!!!! It could also (and did) put me in menopause. I was advised to harvest my eggs if I thought I might want more children. I did. Livestrong was instrumental in helping with this financially.
I thought all stages of cancer could be a death sentence. While cancer at any stage can come back, stage 1, 2 or 3 breast cancer is not considered terminal. I was told my cancer at stage 2 was curable.
I didn’t know that breast cancer can come back after treatment. Even though my cancer was not considered terminal, I learned that it stays in the blood stream and can come back at any time in my major organs: lungs, liver, brain or bones. If it did, I would be at stage 4. Luckily this hasn’t happened but I am always afraid.
I did not realize that cancer would be a lifelong journey. I was told at diagnosis that I would have a bad year. But when that year was over, my hair would grow back, my energy would be back and life would be back to normal. I have found this to be the biggest lie that they tell you. While it’s true that your year following diagnosis is extremely challenging, I have found that survivorship is equally, if not more difficult to navigate. Throughout treatment, I mostly had a positive outlook and used my power of sarcasm to embolden me and get me through the hard stuff. When major treatment is over, it feels like we are expected to simply go back to normal life. But nothing is normal anymore and we have been through a major trauma. I’m in therapy now to deal with the aftermath of cancer. It is one of the hardest things I have had to do in my life but I am working on it.
There is no right way to do breast cancer. When you get cancer, the message we get is that we have to be positive and we have to fight. We hear stories all the time about cancer survivors whose positivity helped them heal and heal others. We hear stories about those who, because of their cancer became a better person or learned something new. We hear about survivors who create bucket lists and begin a mission to complete them all. This is not true for everyone, though. Some people go through cancer angry and bitter about the card they have been dealt. Some can’t find a positive side to the situation. Some never feel like they have reached some epiphany about why this happened to them or that it happened so that they can go on to do great things. I think the argument as to whether cancer is a gift or not creates one of the biggest divides in our community. It’s something we all take very personally, no matter which side we are on or how we feel about our cancer. But here’s the thing. You do you! However you feel is the way you should feel. If you feel like cancer has made you a better person, that’s wonderful!!! If you feel like you were just fine before cancer and it has set you back both professionally and personally, that’s fine too. They are both valid points of view. So just feel how you feel and do whatever you need to do and say whatever you need to say and feel however you need to feel to get through the shitstorm that is breast cancer.
What are some things you didn’t know about breast cancer before you got breast cancer? What would you add to this list?
Last week I received my third monthly injection of Zoladex. Since I am on a two year regimen (for now, the new recommendation is five years), I only have 21 injections to go!!! Yay!
Zoladex, or Goselerin, is similar to a hormone made in the body, LHRH (luteinizing hormone, releasing hormone). It’s purpose in women is to decrease the production of estrogen so that it can stop the growth of ER+ cancer cells. The medication is an implant which is injected by a large needle into the abdomen just below the naval. The medication is released in the body over the period of a month.
This drug has done well in clinical trials with pre-menopausal women, particularly under the age of 35 (but, according to my oncologist, it is now recommended for all pre-menopausal women with ER+ breast cancer) in conjunction with Tamoxifen. This added protection against recurrence is a great thing, but great things in cancerland rarely come free. Side effects can include: hot flashes, dizziness, headache, sweating, trouble sleeping, nausea, mood changes, and vaginal dryness. Sound like fun? What cancer treatment isn’t?
So far, I have been experiencing intense hot flashes, sweating and fatigue. Maybe a little moodiness but that can be from being so freaking tired all the time. Who knows? The hot flashes are awful. It feels like I am a radiator, and when a hot flash starts, I’m being heating up from the inside out, until I am burning hot all over. My face turns really red when it happens. I’ve had several people apologize to me during a hot flash, asking how they’ve embarrassed me!!!! Now, that’s embarrassing. And the worst thing about a hot flash is that there’s nothing you can do to stop it. It’s like being on a rollercoaster and going down hill. You just have to get through it. There’s no stopping it once it starts. There’s no stopping it before it starts. It’s a constant ride but I never know where and when it’s going to begin. It’s awful.
This is what a hot flash feels like.
The shot itself, well, is way more than a shot, really. One person on my Facebook page described it as a “harpoon.” I think if you tried to look it up, you could find what the needle looks like but I can’t bare to know. I think if I ever saw the needle, I’d never get it again. The injection doesn’t hurt me. I’m still pretty numb from my DIEP flap so, that’s good, I guess. It must hurt others because the nurses always cringe when they have to give it to me. You know it’s a huge fucking needle when even the nurses, whose job it is to stick you with needles all day, recoil at the thought of giving this injection. And while I haven’t seen the needle itself, I have seen the size of the box. It’s huge!!!!
The Zoladex Box in comparison to a tissue box.
The Zoladex box in comparison to a telephone.
The Zoladex box in comparison to me.
I spoke to my oncologist about my side effects. She wants me to start acupuncture to help with the hot flashes. I like this alternative idea to medicine to help with my symptoms. I don’t like that I have to find yet more time and money to manage my side effects. With the lymphedema, depression, anxiety and now hot flashes, managing my symptoms is becoming another job. A very expensive job. Ugh!!!!!!
Cancer. The gift that keeps on giving. Were truer words ever spoken?
Are you on Zoladex? What side effects are you experiencing?
Have you tried to manage your symptoms with acupuncture? If so, how is it working for you?
There’s nothing like starting to exercise again after a long hiatus to make you feel like a total and utter failure. In your mind, you can sprint for miles while in reality, your body will only take you to the next tree, or car, or lamppost. It’s discouraging to say the very least.
I know that I should be forgiving and kind to myself. Not that long ago I underwent a huge surgery and this is after 6 months of chemo and radiation. That’s not a small thing. And the recovery from this particular surgery, the DIEP Flap, was especially rigorous and intense. I couldn’t move for weeks. Exercise was out of the question. I mostly lay on my couch and binge watched Scandal, The Good Wife and How To Get Away With Murder.
I did all of this without caring much for what I was putting into my body. I didn’t go crazy or anything but I certainly didn’t measure the amount of ice cream that I was ingesting. Well, I guess I could measure it but in pints rather than small measuring cups. I did try to eat a balanced diet with lots of veggies, though. But when you’re not moving it doesn’t matter so much. Between being a couch potato and the side effects of the tamoxifen, I have gained a little weight and I’m really unhappy about it.
Getting out and exercising is really hard. For starters, between work and raising my son, I don’t have a lot of time left over to exercise. I would love to take a class but my husband works long hours so he’s not home in time for me to get to a class. I also don’t know what kind of exercise I can do without hurting myself. The last time I tried to exercise in a slightly vigorous way was during chemo. I put on The 30 Day Shred on my dvd player and somehow, despite low hemoglobin counts, got through the video. But it wasn’t long after that my cording and lymphedema developed. I’m positive that this vigorous exercise is what triggered the issues. I was told by doctors to exercise. I was told to take it easy. So I modified the pushups and did some of the exercises with light or no weights. But that wasn’t careful enough.
I didn’t have any guidance when it came to how I should exercise. When I am told to take it slow or easy, what does that look like? When can I get back to the things I love to do, like boxing? I love the idea of punching something but I can just imagine swinging my right arm out for a hard jab and feeling that awful pull of the cord that begins in my breast and goes all the way down into the pit of my arm and to the webs of my hands. I don’t need more cords and I don’t need my lymphedema to worsen.
So, that leaves me with running. I hate running. No. You don’t understand me. I HATE RUNNING!!!!! But, my husband loves running. He loves it so much that he runs half and full marathons. He makes me come out and watch him. He talks about running constantly. CONSTANTLY!!!!! If you know and love a runner, I know you know what I’m talking about. A runner has a myopic view of life…running is great and everybody should love it. They can not, in their egocentric state, imagine how one can not love running. They live for the euphoria that comes from pushing through the pain.
Me? I never hit that euphoria. My endorphins don’t kick in. They never have after a run or workout. In fact, it’s the opposite. I get pissed of when I run. Like, really angry! I curse, I cry, I hate it. Does this happen to anyone else?
But here’s what I do love. I love being outside. I love watching all of the people in the park with their babies, children, friends….I love seeing the trees bloom in the spring and the leaves turn bright oranges and yellows in the fall. I love it more than I can express.
Today, I went out and ran for the second time since my surgery. It was awful. I barely made it through. But as I huffed and puffed through Prospect Park, I noticed some of the trees were pink with flowers that must have just bloomed.
It’s spring. It’s time for a fresh start. It’s time for things to begin their cycle toward life and beauty again. Some of the trees are still bare, with not a bud in sight. They are lagging behind. I know how they feel. But inevitably, in their own time, they too will bud and grow leaves. If all of these things in nature can grow and have their fresh start, why can’t I? So I will go out again soon. I will do my best. I will try to be kind and loving to myself. Even when I’m running.
I have to admit, I’ve been planning the title of this post for several weeks, ever since I last saw my oncologist we decided to get me started on Zoladex. The title was supposed to be, Zoladex Is A Pain In The Ass, but it can’t be anymore. I’ll explain why.
Zoladex is a drug administered by monthly injection and in combination with Tamoxifen in premenopausal women, lowers the risk of recurrence when diagnosed with early stage, hormone positive breast cancer. It is an ovarian suppressor so it stop the ovaries (or lowers) production of estrogen. This will put me in complete menopause.
My oncologist has been bringing up this drug to me for over six months now and I have been very resistant. “Why,” I asked on many occasions,”do I need to do something else? Why do I need to put another drug in my body? Haven’t I done enough?” It was really that last question I was asking. “Haven’t I done enough?” Why isn’t a mastectomy, chemotherapy, herceptin, radiation and tamoxifen enough to keep my cancer at bay?
The answer she gave me is that Zoladex is one more thing that can help prevent recurrence. While it doesn’t improve my chances a huge amount, my oncologist feels that the benefit it is statistically significant in women who were diagnosed under the age of 35 (I was 37 so, close enough) when in combination with all of the treatment I have had. It took a long time for me to come to the conclusion to try it but I promised my son that I would do everything…EVERYTHING…to make sure this cancer never happens again. So, I need to at least try it.
I had heard that there is a “technique” for administering the injection so I was very curious about that, so I asked my oncologist. Her reply was, “How graphic do you want me to get? Are you sure you want to know?” I felt the blood leave my head but I said that I’m not good with surprises and that I’d rather know than be caught off guard. So she informed me.
WARNING: If you do not want to know how this is done, stop reading now. I acknowledge that this information is not helpful for all.
“Well, it’s a big needle. A really big needle. Whatever you do, don’t look at it. Because it’s a big needle, after sticking it in the skin it needs to be twisted. Then we inject the liquid which is more vicious that others. It is going to hurt but only going in. And when it’s done, it’s done. That’s it. And we inject it into your backside.”
My ass!!!! MY ASS!!!! They wanted to stick a huge needle into my ass?
Hence, the title I’ve been planning for weeks. Zoladex Is A Pain In The Ass.
But, yesterday, when I got the injection, I was informed I was going to get it in my belly and not my bum. “Are you sure,” I asked my nurse? She was positive. I was simultaneously elated and disappointed; elated because I got to keep my pants up and avoid the humiliation of getting a shot in the ass but, disappointed because what was the title of this post going to be?
I informed my nurse, Nina my chemo nurse, of course, that I didn’t want to see the needle. She agreed it was not a good idea. But let me tell you what I did see. The box!!!! I saw the box the needle came in.
I am of the belief that anything that is going to enter your body in any way while you are still conscious should not come in a box that size. I started to sweat. I wasn’t sure I could do it. But amazing Nina kept me talking (probably so I wouldn’t faint), sprayed some numbing solution on my skin and did it.
It didn’t hurt. Maybe a slight pinch but that’s nothing. And it was done in seconds. In fact, it hurt more after (a little soreness) than actually getting the injection. It was done. Now I just have to see if I get any side effects…more hot flashes, night sweats, that sort of thing.
I had been psyching myself out for weeks over this injection. In my mind, the needle looked something like this.
Or worse, this one.
My imagination really got the best of me. I’m still happy that I was prepared for what was coming. If I had seen that box and didn’t know what was in store, I think I would have flipped out.
It’s also ironic that I started this new treatment on the anniversary of my last chemo treatment. I can’t believe that one year ago, I said goodbye to chemotherapy (hopefully) forever! What’s amazing to me is how quickly this year has gone by. From the time I was diagnosed and throughout treatment, it felt like the world stopped turning and I was stuck in time. And since then the world has been spinning uncontrollably forward. This is good in the sense that I have been getting back to normal life, to the best of my ability. But it’s also had me scrambling to catch up. More on that in another post.
But today, I want to celebrate how far I’ve come. Even though I’m starting a new treatment and I don’t know what the side effects will be like, I have to remain hopeful. I have to trust that it’s one more thing keeping me safe. It’s one more thing ensuring that I see my son graduate college, get married and have his own children. And for that, you can stick any size needle into me whenever you want (not really but yes really).
Enjoy some images taken one year ago. And you can read about my last chemo day and how I celebrated here and here.
“In an art form that deliberately conceals the enormity of effort that goes into its creation, we are not meant to see behind the curtain. But I think that this does a great disservice to the dancers, and that having a sense of what lies beneath both enhances our experience of the performance and leads to a more profound appreciation of the dancer’s essential being.” -Rick Guest, photographer
The thing I admire most about ballet dancers are their ability to make the super human look effortless. The leaps, the spins, the balancing on toes from movement to movement…it’s as if their bodies are being carried by the wind. Or their spines are jelly rather than bone. Their legs are pulled up straight by a string controlled by an invisible puppeteer. But what is not often known to, or considered by the audience are the hours upon hours of grueling rehearsal. We don’t see the bruises or see the winces from the sore muscles. We never see the sweat wiped from faces and chests backstage between entrances and exits. We never see the blistered or broken toes that are hidden by the delicate, pale pink pointe shoes.
It is the job of the dancer to dance through and in spite of the pain. Just like an athlete who must still get a goal, a touchdown, or land solidly, without faltering from the uneven parallel bars despite sprained and broken bones. The show must always go on and it is the job of the artist to hide the hard work and the pain beneath the costume.
After six weeks of taking a medical leave of absence to recover from my DIEP Flap reconstruction surgery, I will be going back to work. While I love my job and can’t wait to see my students again, I’m feeling trepidatious about getting back to normal life. I have recovered well, without much incident, but I feel like I’m still recovering. I can get around and move normally if I’m careful but I don’t have the same energy or endurance as I did before my surgery. I get really tired in the middle of the day and find it hard to focus or get my energy back without resting. Each week I experience dramatic improvements and I have every reason to believe that within the next few weeks my engery and endurance will return.But for now, I feel like I have to hide what I feel.
I am always saying, “fake it ’til you make it.” I say it to students who tell me that their too tired to get up from their seats to play a game or perform a scene. I tell them that if they fake having energy, that soon they really will be energized. It’s mind over matter. If you put on a smile, eventually, you will feel happier than you did a few minutes ago.
I did this throughout chemo and radiation. I had to hide my fatigue under the costume of smiles and exuberance. It ended up working for me. And now I need to do it again. I must put on my costume and conceal the awful scars that lie beneath; the scar from hip bone to hip bone, that show all of the hard work and healing I have had to endure these last six weeks. My students don’t care if I was cut in half on January 8th. And they shouldn’t care. I’m there to do a job and the show must always go on.
So, on Monday, the alarm clock will go off. I’ll groan and complain as I walk to my shower. But by the time I get off the train and walk into school, I’ll have a smile on my face. I will teach effortlessly, with grace. No one will see the work it’s taking for me to keep going. And maybe I’ll get so lost in the moments, the laughter and stories, that I’ll forget for a little while myself. No one will see what lies beneath.
This was shared with me by the good people at Healthline and I agreed to post it to my site. I remember looking at this when I was going through chemo. It helped me think of questions to ask my oncologist about treatment. Thank you, Healthline, for reminding me of this. I hope it helps other.
Oftentimes, when facing cancer treatment, you do not have too many choices. You can choose to have a mastectomy or not. Go through chemotherapy or not. Get radiation or not. These don’t really seem like choices. At least, for me, they were not presented as such. When speaking to a nurse about whether or not I would need radiation, he said, “Oh yeah, you’re getting radiation.” And it was decided. But recently, as I move into the final phase of my treatment, it seems like I have had to make a lot of decisions that can affect the rest of my life.
When I met with my plastic surgeon, Dr. Saadeh, after being diagnosed in August of 2014, he presented me with all of my reconstruction options. When I say “all,” I mean two. 1) I could get an implant. The pro of getting implants is that it is a simple, outpatient surgery with a short recovery time. I’d be able to get back to normal life, including raising Oliver, in a few short weeks. The cons of implants are that they need to be replaced about every 10 years or so, assuming that they don’t burst or deflate (REALLY?) before that. That means several surgeries over my lifetime. I could develop scar tissue around the implant which would make the breast hard. Also, if I were to gain or lose weight, only one breast would show change while my reconstructed breast would remain the same. 2) Either DIEP or TRAM Flap surgery (I write both because I honestly can’t remember which one has been offered to me although I’m pretty sure it is the DIEP Flap). A TRAM Flap reconstruction involves removing fat, tissue, vessels and muscle from the lower belly area and moving it up to reconstruct the breast. The DIEP Flap surgery is similar to the TRAM Flap except it is muscle sparing, meaning they take the tissue, fat and vessels but don’t use any muscle. This can be done by a surgeon who specializes in micro-surgery. The pros of this surgery is that the reconstructed breast is very similar in feel and look to the remaining breast. If I gain or lose weight, it will show in both breasts since it is my own tissue. While this is a more invasive surgery initially, I will have less surgeries for maintenance over time. The cons of this surgery is that recovery is significantly longer than with getting implants (about 6 weeks total with 3-5 days in the hospital). I will lose core strength. I will not be able to lift Oliver for several months. 3) No reconstruction at all. This was not an option given to me but it is an option and one I have strongly considered.
Reconstructed breast after DIEP Tram reconstruction. Photo from breastcancer.org
Reconstructed breasts with implants. Photo from breastcancer.org
My plastic surgeon suggested that, given my lifestyle and the fact that I have a young child, the best option for me would be to get implants. This was a strong recommendation. He said he would do a Tram surgery for me but he didn’t think it was the right time in my life to have that kind of invasive procedure. At the time, I didn’t care. I just wanted the cancer out of my body. I didn’t care if I had a breast anymore. I didn’t care if they took them both. I just wanted to live. I wanted to escape my life.
I remember being disappointed with both of my reconstruction options. I thought I’d look through a book of celebrity breasts and, literally, choose the ones I liked. “I’ll have one Salma Hayek, please!!!” But that’s not how this works. I could change my breast size (I don’t want to, mine are just fine, thanks!) but my breasts will never look “normal” again. Surgery will not be a positive thing. It’s like choosing a Congressman; you choose the lesser of two evils and hope for the best.
Fast forward a year later. I have had my mastectomy, six months of chemotherapy, a year of Herceptin, and 15 sessions of radiation. My breast is rock solid hard due to scar tissue and damage from the radiation. I’m in constant discomfort. I have also developed Axillary Web Syndrome in my arm down to my fingers and lymphedema. I went to my appointment with Dr. Saadeh, convinced that I was going to get an implant. All we had to do was iron out the details. When and where. But that is not what happened.
“So, what’s going on with that arm,” he asked?
“Ummm…I thought I was here to talk about my boobs,” I replied.
But that’s not what he was interested in. It turns out, NYU is now starting to do lymph node transplants and he seemed very interested in steering me in that direction. I had heard about lymph node transplants but was under the assumption that they were still in trials. They are not in trials but the science is very new and doctors are just starting to do the surgery. He was also now strongly suggesting that I do the DIEP Flap surgery over getting an implant.
“Why would I want to do that,” I asked? “I have an abnormally huge child who likes to be picked up all the time. Wouldn’t that be a problem?”
“Well,” he said, as he checked himself out in the mirror (something he did several times during our appointment), “it’s true that there would be a longer recovery and you could not lift your son for several weeks but I think this would be a good solution for you. Studies are showing that when you reconstruct with your own tissue, it can increase blood flow to the affected arm, improving circulation and helping to improve symptom of lymphedema. And I really think you should consider the lymph node transfer surgery. I think you would be a good candidate.”
So now, in a matter of minutes, the surgery I thought I was going to get, the implant, is no longer being recommended for me. I could do it but my surgeon thinks I will still be extremely uncomfortable physically. I now have to wrap my head around the possibility of a completely different surgery; one that will be more violent, more invasive and take up more of my life. And not only that, I was being presented with a whole other surgery that could help with my lymphedema but, it is completely new and just starting to be done at NYU for the first time. I would be one of the first ones at NYU to get the surgery!
“I need to read articles. What articles can I read about this? And I need to get second or third opinions. What doctors can I see?”
I think this shocked him a little bit but he answered my questions. He told me about Dr. Babak Mehrara, who works at Memorial Sloan Kettering and is a pioneer in the field of breast reconstruction and lymphatics. He told me to go see him (they are close friends) and to read his articles. As soon as I got home I looked him up, read this article about lymphatic regeneration after tissue transfer, and called his office to schedule an appointment.
A few short weeks later, I was in Dr. Mehara’s office. He spoke really fast and had a lot of confusing things to say. But here is what I understood. A lymph node transfer is not a cure. I’ll say that again, it is not a cure. When it is done, at it’s best, it prevents the lymphedema from getting worse. This was a huge disappointment to me. I thought going in, that this was recommended to me because it would fix me. I learned that this was not the case. I also asked him about the DIEP Flap surgery helping my lymphedema. He said it has helped with some people but not a huge percentage. And, again, it would not be a cure.
This is the first time that I had to face facts and acknowledge that my lymphedema is forever. It’s never, ever going away and I will have to manage it for the rest of my life. This information suddenly weighed on my chest. I couldn’t breathe. The disappointment was more than I could bear. Despite this, he suggested that I get a test called a lymphoscintigraphy which would provide pictures of my lymphatic system.
In the last year, I have been through some incredibly unpleasant medical procedures. But this one really bothered me. On the suck scale, from sucking boogers to sucking sweaty horse balls, well, you can guess where on the scale I might be referring to. The procedure entailed 16 injections. Eight in the webs of my fingers and eight in the webs of my toes.
Fun Carrie fact…I hate my feet being touched. It freaks me out! I hate getting pedicures for this reason but suck it up once or twice a year. So to have eight needles injected in between my toes as two nurses hold and spread them was just about one of the worst things I could think of.
After they injected my hands, I had the pleasure of having a machine, which I will name, “Sloth” scan me as my arms were place over my head. I think I had to stay in this position for 45 minutes. Cue major cramping and muscle spasms. But I could not move or we’d have to start again.
The same thing with my legs. The machine slowly scanned me for about 45 minutes. Could I listen to a podcast? Surf the internet? No! Just me and my thoughts about needles being stuck in my fucking toes!!!
After about three hours of tests, the nurse came back. “We need more.” MORE????!!!!???? Back in the machine I go for another hour as it proceeds to scan my WHOLE BODY! Oh, Sloth, how I hate you!
After four hours of needles and scanning, I was free to go.
“When will I know the results,” I asked?
“Well, I can see the results. But I can’t tell you,” said the nurse. “Your doctor will call you on Monday.”
Bitch.
One week later (seriously) after many phone calls, I got a call from Dr. Mehrara’s nurse confirming that I did in fact have lymphedema in my arm. They now wanted to schedule me for another test called an ICG Lymphography. More needles. This would give them a more detailed image of my lymphatic system and could tell whether or not I would be a good candidate.
But I knew I wasn’t a good candidate. You see, I’ve always had swelling in my right foot and the lymphscintigraphy confirmed that I have a slow uptake of fluid in my right leg which puts me at risk for lymphedema.
I consulted more doctors. I talked to every doctor and nurse that I encountered. They all agreed with my concerns that this procedure was too new and that it could be too risky for me. Why transfer a set of lymph nodes from one part of my body to my arm when 1) it won’t cure my lymphedema and 2) could possibly cause lymphedema in another extremity. This was the end of the line.
I met with Dr. Mehrara this Wednesday. I was supposed to have the ICG test but told him I didn’t want it. He agreed that this wasn’t the right procedure for me right now. One decision down.
Now, for my reconstruction, it has been a rough choice. I have been thinking about it every day since my meeting with my plastic surgeon in September and I think I’ve made the choice I need to make but it’s not the one I want. I will be getting the DIEP Flap surgery.
I remember thinking when I was diagnosed with cancer over a year ago, that I couldn’t wait until I got my reconstruction. In my mind, it was the event that would end my cancer journey (for lack of a better word). It would close the chapter on this part of my life and I’d be able to move on. But cancer doesn’t work like that. It throws difficult decision after difficult decision at you. It is constantly testing you. “Are you still strong,” cancer asks? “How much more can you take?” I guess we will find out.
Ken, Oliver and I will be taking a staycation for the rest of the summer. While I can’t quit social media cold turkey, I will be taking a break from blogging until we get back…unless something incredibly dramatic happens, of course. Enjoy the last days of summer! I know we will.
Here are some older posts to look back on in the meantime.
My Little Bs Have the Big C 