We’ve compiled excerpts from our friend Lena’s blog, but her story is more than just what is written here. Be sure to click through at the end to read more.
They began with saying I have stage 3 Hodgkins Lymphoma. Stage 3. The cancer was in my neck, chest, stomach and pelvis. It was slowly taking over my body, trying to kill me and all I could think to ask is “will I loose my hair”. They then pulled out a huge packet of information explaining that I will have 5 chemotherapy cycles. The packet was full of the side effects of the chemotherapy. It was a packet of side effects…what was this medicine going to do to me?
I remember sitting in this meeting feeling nothing, no emotions or thoughts were going through my head, I was numb.
It was the week before my first day of chemo. I decided I should cut my hair short so when it fell out it wouldn’t be huge strands of hair. This was one of the hardest days in my journey so far. I came in with my hair matted and tied up in a bun. I hadn’t washed it in weeks, I was too weak to even stand in the shower. I remember sitting in the chair as she was cutting my hair off and just looking at myself in the mirror trying to hold in the tears. My hair was one of my most prized possessions at the time. I worked so hard on maintaining the color and finally found the perfect length to frame my face and now it was going to be all gone.
After the haircut was done a lady who was waiting to get her hair done said “it looks so cute on you what a fun summer cut!”
Little did she know I was about to enter anything but a fun summer much less a fun summer cut.
My first day of chemo was the beginning into the unknown. Every cancer case is different. Every person is different. This was my case and this was the beginning of the war with my body, the cancer, and the chemo.
I remember walking into Children’s National for my first day of chemo. All the nurses were all happy, loud, and excited to be at work. I was the exact opposite. I was terrified I had no idea what to expect and them being loud was not helping. I immediately shut down.
I was having a panic attack.
After I calmed down they accessed my port by shoving a needle into the layers of skin in my chest to get to it. I remember trying to stay strong as I braced for the unknown pain that would come next. Luckily it wasn’t too bad because I put Lidocaine (a numbing cream) on it to ease the pain.
These rooms are where I stayed from 8 am to 7 or 8pm to receive chemotherapy. It was all so foreign to me. I had no direction.
The doctor came in to check in on me to see how I was doing later in the day. I remember saying “I haven’t thrown up yet!” and he chuckled and gave me the face of “let’s hope it stays that way.”
Well it wasn’t.
I began to have hot flashes. I was burning up one minute and freezing to the point that my teeth were chattering the next. My body was going out of control and I couldn’t do anything about it.
My body was shutting down and I couldn’t help myself.
I was too weak to wash my face or brush my teeth. My arms were so weak I couldn’t raise them to reach my face without feeling a tremendous ache of pain.
I didn’t have energy to take a shower. I was so dirty. My teeth hadn’t been brushed in couple days, my face was starting to break out because of all the excess dirt and my body was full of sweat from my night sweats that would drench my bed each night.
I was hopeless.
I was in so much pain that tylenol had no effect on me.
The doctor prescribed me oxycontin to relieve the pain.
The oxy made me feel scared. I felt like I was in a different room looking at myself. I hated it, but it was the only thing that took the pain away.
I remember over the course of three days waking up from sleeping, opening my eyes to see a family member in the room and closing my eyes to go back to bed.
I felt nothing. I was nothing I was numb.
On Saturday I was feeling worse. I began getting hot flashes and tremendous shivers. I had a fever and needed to go to the hospital because I was at risk of an infection.
I remember sitting in the car on the way to the hospital. I could barely sit up. I had no energy to cry or even worry. I just sat there looking out at the window seeing the city lights shine.
“Hey what happened to your hair”
“Did you loose a bet?”
“We have the same hair cut! HA!”
“I think they confused us because of our heads..”
These are all things that have been said straight to my face by complete strangers. I know my blog is about how bald is beautiful but I wanted to shed a light that being bald in society especially at a young age of 20 is NOT easy.
I get constant stares, scared looks, and comments by complete strangers on a daily basis. At first being in public was terrifying for me. Everyone looked at me like I was an alien, like something was wrong with me, like they were sorry for me.
Cancer took away all sense of normality from my daily life. So getting comments about how I looked different than the average 20 year old girl really took that last bit of confidence that I had away from me.
I know what you are thinking. Why didn’t you just wear a hat or a wig?
But that was not a solution in my eyes. When I put a hat on I felt like I was hiding away from a major part of my life. I was covering up the fact that I lost my hair. I was hiding from the truth. It made me feel even more different because I had to hide something that was happening to me from society, like I should be ashamed of it.
When I first got diagnosed with cancer the first thing that popped into my head was “Am I going to loose my hair?”. I did not even think about if I was going to die.
One thing I have learned throughout my journey is how important looks are to us as members of society. We always have to have this perfect image of ourselves portrayed for the world to see. We have to have the perfect Instagram picture, with the perfect caption and it has to get tons of likes or else we look bad.
We are so focused on achieving the perfect image that we don’t take time to take a step back and focus on what’s really important.
Are you healthy? Are you happy? Do you have people that are supportive, loyal, genuine, and kind in your life?
Because in the grand scheme of things… that is all that really matters.
Once I began to realize that, being bald was much easier. The chemo may have made me loose my hair but it also killed all the cancer in my body and THAT is what is important. I learned that genuine and loyal friendships don’t come very often.
I lost one of my best friends to my diagnosis but I also gained and formed stronger friendships and THAT is what is important. I may have gotten weird looks, mean comments, and sad faces but I gained strength to move forward and focus on the positives, that I am regaining my health, and THAT is what is important.
Next time you see someone who appears to look “different” in your eyes stop and think… maybe they have something going in their life and you should respect them and smile at them for being strong enough to embrace it.
My cancer spread from my neck all the way to my pelvis. Tumor masses larger than one-third of my chest size pressed against my chest and the large artery of my heart.
I needed to get radiation on my chest in addition to the 5 cycles of AVBD chemotherapy to make sure all the millions of cancer cells were destroyed. However, since the tumors were pressing against the large artery of my heart and chest area I couldn’t get regular radiation, I had to get a special type: proton radiation. Proton radiation is five year old type of radiation that directly targets the tumor and does not spread to other organs, but not every oncology center has it. The closest oncology center that could perform proton radiation for me was in Baltimore, Maryland.
I would have to travel 45 miles away from home every single day for three weeks.
On top of the stress of getting the treatment I had to face travel time, traffic and an entire new doctors office.
There was no way I could travel up to three hours one way each day.
My physical and mental well being couldn’t afford it and neither could my parent’s pay check.
I had three options:
1. Stay at a hotel averaging $180 a night
2. Stay at Ronald McDonald House catered to younger children for free
3. Stay at the American Cancer Society’s Hope Lodge catered to adults for free
The options I could afford to choose from were catered to certain age groups. One young children and the other older adults. There was nothing for me, a young adult 20 years old who had to put her life on hold from college and socialization to receive cancer treatment.
If I could describe my cancer journey in one word it would be isolation. I was isolated from my peers and people that could understand me. Finding a place to stay while I was getting treatment was a perfect example of my isolating life with cancer. Living on an island of cancer that was either surrounded by toddlers or adults over 60 years old and me.
72,000 young adults are diagnosed with cancer every year and I was one of them. Yet I did not have a place to stay that made me feel like I belong, like people understood me, and like people could relate to what I was going through at this time in my life.
I chose to stay at the Hope Lodge, hoping and yearning to meet a young adult that I could relate to and have conversation with. I wanted to meet someone like me, someone who had to leave college and fight cancer. I never met anyone that was my age, but I did meet a courageous woman who was fighting Leukemia for the third time and an older man fighting brain cancer. Both of them talked with me and shared stories how the Hope Lodge provided them a place to comfortably stay and receive treatment.
However for me I felt alone, isolated and wished I had a community that could relate to me. Then I got an email from the Ulman Foundation.
The Ulman Foundation is a community that provides hope for people like me.
They take young adults who are fighting cancer off their island of isolation and provide a space for them to see they are not alone.
I remember the first day I visited the Ulman Foundation headquarters in Baltimore.
It was like a weight was lifted off my shoulders, I felt at peace. I was finally surrounded by people my age again. I was surrounded by people that brought my smile back and gave me hope. I was surrounded by another young adult who had the same cancer as I did, eight years ago. She gave me a glimpse of what it looked like to be cancer free and taking on the world.
They are currently building an “Ulman House” for young adult cancer warriors, like me. A place for us to feel comfortable, at home and shed a light on the darkness of cancer while we are receiving treatment.
The Ulman House was not open while I was getting treatment but I know it is going to change so many lives for the better. It is going to benefit so many families and help them through the tough times of seeing their young adult receive cancer treatment while being away from home.
The Ulman Foundation has brought so much hope into my life. It has brought me off the island of isolation and brought me to a community that I can relate to.
When I first walked into their building I saw a painting that had the saying, “Cancer Changes Lives, and so do we” The Ulman Foundation has lived up to that saying every day since I walked into that door.
Cancer has changed my life, but communities like the Ulman Foundation have helped me heal, adapt and grow through and beyond my diagnosis.