I’m going to Budapest!
My maternal grandparents were from Hungary so visiting has been a dream of mine for a long time. I’m so excited but I feel so unprepared. I usually have every moment planned and know everything about everything! I’ve been too busy for that this time around. So, I’m just going to have to go with the flow a bit.
I can’t wait to share all of my pictures with you all; the architecture, the food, the people, the food, Oliver, more Oliver, THE FOOD!!!!! And you know that there will be dozens of pictures to share with you. See you all soon!!!!
Last year I wrote a very popular post, Lymphedema And How It Changed My Life. It went viral…well, as viral as a lymphedema post was going to get. It resonated with a lot of people. I wrote about how angry I was at getting lymphedema after being diagnosed with breast cancer and going through hell to get it out of my body. I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself. I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form. I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.
I want to say that a year later all is well. I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away. I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs. I want to say that a year later, it’s under control. But I can’t say these things. I just can’t.
It’s a year later and I’m still pissed off. I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control. I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often. I’m pissed off that I have to take time out of my day, nearly every day to pump my arm. I’m pissed off that I have to go to sleep every night with my arm wrapped. I’m pissed that I have to roll my wraps every night. I’m pissed that when I look in the mirror, one of the only things I see is my big arm. Nothing else. I’m still pissed off that this was done to me. I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control. I’m pissed that I don’t feel beautiful.
There are some positives. This year I learned to wrap my bandages myself. While I hate doing it, it gives me a sense of control. I’ve been able to get swelling under control that way. I believe that with hard work the swelling will decrease. It already has. It’s just take a super long time on me for some reason.
I also think that there are a lot of advances happening within the medical field. More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with. There are more studies and trials happening. They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet). There is hope on the horizon. I truly believe that there will be some real help for men and women like me in my lifetime. Maybe not a cure but something that will make living with this condition so much easier.
I struggle every day knowing that I have to live with lymphedema the rest of my life. I get depressed often. But at the same time, I have hope. I have hope that science will make advances. I have hope that my body will finally cooperate and that there will be a turning point in my care. I have hope that I will get this under control.
Maybe not today. Maybe not tomorrow. But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post. Maybe I’ll write about how I don’t hide myself. Maybe I’ll write that I don’t think about my arm and cancer all day long. Maybe I’ll write about how I feel like I can live my life confidently again. Maybe, just maybe, I’ll be able to write about a major medical breakthrough.
One year…I can do one more year.
It happened at the gym a couple of months ago. Earlier that day, I read about another young mother who had lost her life to metastatic breast cancer. I followed her on Facebook and commented on her posts often. I’m not sure she knew who I was but through her posts I felt I knew a bit about her and her life so the loss hit me hard. And to see any child left without his or her mother just devastates me.
On that same day, the news was replaying a story of a young woman who lost her life to colon cancer (I think), but not before fulfilling a lifelong dream of being a contestant on Jeopardy. I saw the headlines on my Facebook feed but didn’t really pay attention to it.
At the gym, I was doing my normal treadmill routine. Running, walking, sprinting, walking…. I was doing fine, listening to music and watching the news silently on the screen in front of me. I started one of my final sprints of the workout and on the news was the story of the young woman who died who had appeared on Jeopardy. Suddenly, and seemingly out of nowhere, I broke down in tears. I could not stop crying. I had to hit the emergency stop because I couldn’t run anymore. I was done.
The next time I went to the gym, the moment my heart rate went up, I started to get short of breath. My heart began to flutter. I felt weak and light headed. It paralyzed me. I tried to push through and I couldn’t. I walked away from the workout.
The next few times I went to the gym, the same thing happened. The moment I increased the difficulty of my workout, my body would shut down.
I mentioned this to my therapist and she said I was having a panic attack. She advised that I alter my workout, either by going on a different machine or slowly working up to a more vigorous workout on the treadmill. If I felt the attack coming on, to not stop but to slow down.
Her advice worked the first time. I haven’t had an attack since. But it shocked me that this happened. I thought I was doing so well at managing my anxiety. I guess the fear and anxiety of cancer is always there. It might be dormant for a while but the monster could always be woken.
Has anything like this happened to you?
Did you start getting panic attacks after you got cancer?
You may have noticed that I’ve taken a blogging hiatus. I just haven’t been able to bring myself to sit in front of my computer and write about cancer lately. I’ve had things to write about. Nothing major, just life’s little post-cancer experiences. It’s just…I don’t know. I’ve opened up my blog to a blank page, stared for a while and decided that I’d rather just watch some tv or do thing online. I haven’t even been reading the blogs (sorry friends, I haven’t forgotten about you).
I think this is coming from the fact that I’ve been all consumed with life post-election and Trump being inaugurated as our 45th president. I haven’t been sleeping. I’ve been obsessed with the news, both on television and of the printed variety. I’ve been feeling helpless so I have been spending hours on the phone trying to get through to my Senator and Congressperson. I’ve been signing petitions. I’ve been sharing news stories on Facebook and commenting on others. I’ve been going to protests and marches.
This obsession with resistance is the same obsession I had with breast cancer. When I was diagnosed and up until a few months ago, I scoured the internet for information. I lost sleep over it. I read every article, blog and commented on everything.
But now, I just don’t have the mental and emotional space for both cancer and my new America. I think my brain would explode if I spent too much time in both worlds. So, I’ve left Cancerland for a while.
I’m not gone for good. Even as I write this (it feels good), I’m thinking of all the things I haven’t written about in the last month. Some good. Some not so good. But it seems, at least for now, my head and my heart can’t be in two different places at the same time.
I hope to write again soon. I’m having my next surgery on Thursday, the next step in my reconstruction and Lymphedema Awareness Day is coming up. I definitely want to write for that.
I just wanted to say, I’ve missed you all. I hope you have missed me. And don’t be offended if I haven’t read or commented on the things you have written. It’s not personal. You are still my community.
Today is my birthday. Today I turned 40 years old.
I hear that number and I feel conflicted. On one hand, I don’t feel like I’m 40. I feel more like 25, like I’m still finding myself and getting comfortable in my skin. 40 used to seem so old. And I’m not old at all! I still have so much to learn and discover. I can’t be 40. On the other hand, I’ve made it to 40. Just over two years ago, I wasn’t sure that was going to happen. I heard the word, “cancer” and didn’t know if I’d reach any milestone. But here I am, and it seems to me that 40 is something to be celebrated.
I wish I have given some thought as to what I want to define the next decade of my life. Beyond being surrounded by my loved ones, creating theatre and traveling, I don’t know what I want.
I do know that I want this year to be filled with the new; new restaurants, new routes through the park, new travels and more. I want to expand myself. I want to grow.
You all know that I am not a “cancer is a gift” kind of gal and yet, I feel as though I have been given a gift to continue into this new decade. When so many of our brothers and sisters have been lost to cancer’s oppressive power over our bodies, I can’t help but reflect on the fact that, in many ways, I am one of the lucky ones.
I have but one birthday wish from all of you. Many of you who are reading this went to school with me, which means that this is the year that you also turn 40. The American Cancer Society has decided that women who are not high risk for developing breast cancer begin mammograms at age 45 and those with family history and other risk factors begin at age 40. I have mentioned on this blog before my dissatisfaction with these new guidelines. As a young breast cancer survivor who found the lump through a self exam, I think we need more tools and resources, not less.
So, what I want from all of you, women and men (yes, men get breast cancer, too), is for you to feel your boobies. Know your body. Know what is normal for you so that you can identify when something is wrong. Advocate for yourself. If you feel that you need a mammogram, find a doctor who agrees with you and get one. Do it every year. Every. Year. Feel your breasts every month. Every. Month.
If 1 in 8 women will develop breast cancer in their lifetime, then I am not the last one that I know who will go through this ordeal. We need to be vigilant, to do the best for our bodies that we can so that we can remain as healthy as we can. We need to educate ourselves and each other and support one another.
So please, this year, get schedule and go to your mammogram (it’s not that bad) and learn how to do a self breast exam.
I think I start every year by telling you that you are the light of my life. This year is no different. It’s amazing to me that I can be just as in awe of you, if not more so, as the day you were born. I feel like you are the same incredible little boy that you have always been, but now you are a year older.
This is the year where I feel like you have really become a little boy. You have strong opinions and wants. You speak with so much expression. You are dramatic like me. Your talents are starting to show. I’m getting a glimpse of the person you are going to be.
You still love to make people laugh. You like to make up stories and words. You like to dance around making funny sounds. You like to call people silly names. Your number one goal in life is to see people, especially me, laugh at your jokes. And you truly are funny. When we came home from parent teacher conferences this year, we said, “Your teacher said that you are doing a very good job at school,” to which you replied, “And they said that I am a funny guy?” They did, in fact, say that. They said that they whole class laughs at your jokes and that several of your friends said that you are the funniest person they know.
You continue to be one of the most gentle, kind hearted people I know. You are always taking care of me. After my surgery this year, you never left my side. You would walk me to the bathroom so I wouldn’t have to walk alone. “Walk slowly, mama. Be careful.” And you wouldn’t leave me until I was safe back in bed. You always ask about my “swollen arm” and kiss it to make it better. You are still trying to wrap your head around the fact that I will have this condition my whole life and that a kiss doesn’t make it all better. But that doesn’t stop you from trying. You are always talking about friends who have felt sad or angry during the day and how you have hugged them to make them feel better. Your love is what this world needs. I think when you grow up, your love and caring for others will be the thing that shapes who you are. I think you are going to change the world!
This year you have become more adventurous. You like roller coasters and other rides. You like to run right into the waves at the ocean, even in your clothes in the cold weather. You take risks that you have never taken before. It’s awesome to watch you push your limits and discover that you can do things you never thought possible. You are beginning to understand that taking risks can reap rewards.
You still are obsessed with trains. You like other things like blocks, legos and puzzles but you are passionate about trains. You love learning all about them, from old steam engines to modern bullet trains. You can’t get enough!
You have learned so many new things this year. A few of them are…to put on your clothes and shoes by yourself, to poop in the toilet, to write your name, to begin to read and spell, to add and subtract, to put a puzzle together by yourself, to ask life’s deep questions (“Am I going to die?” “Why am I here?” “How was I born?” “Why does night happen?” “Why does the mood follow us?”), to use big words like, “frustrated,” and “deflated,” to gallop, to sing whole songs that aren’t nursery rhymes (“Let It Go”), to reenact parts of the musical Oliver, for which you are named, and to make yourself cry on cue.
You love to play with your trains, take train rides, go to the park and run around, ride on your scooter, play with your friends, play with babies, go to school, sing, make up songs and eat sweets. Your favorite books are The Big Book of Trains, Insects, Snakes, Train Song, The Gingerbread Man, How Do Dinosaurs Say Happy Chanukah?, The Three Bears, and so many more I can’t even remember them. Your favorite foods are muffins, lollipops, pancakes, runny eggs, peas, corn, turkey burger, tortellini, ham and cheese sandwiches, ramen (not the cheap, $1 kind but the real stuff), grilled cheese, mac and cheese, ice cream, bananas, grapes and blueberries. You love to bake with daddy. You are starting to love the arts; singing, dancing and acting.
I am proud of you every single day. There isn’t a moment that goes by where I don’t realize how lucky I am to have landed a son like you. You are my everything. I love you to the moon and back, the stars and back, the planets and back and the galaxies and back.
Happy 4th birthday!