What I Wish I Knew Before & After My Cancer Diagnosis
My name is Jasmine, I am 25 years old, and a mother of two boys.
I got diagnosed with B Cell Non-Hodgkin's Lymphoma when I was 17 years old and fresh out of high school. I was ready to start my life when it came to a halt by the three words no one wants to hear “You have cancer”.
Before I got diagnosed, I had a dry cough that did not go away no matter how much cough medicine I took. That dry cough stayed, and later on, I became extremely fatigued. I had no energy to do anything, so I just laid in bed all day… not knowing why I was so exhausted. Shortly after that, I ended up feeling sharp pains in my chest and when I laid down, it felt like an elephant was sitting on my chest. I knew something was not right. I made a doctor's appointment and went when it was time.
My doctor at the time listened to my heart and jumped out of his chair. “Are you okay?! Would you like some water?! I don’t mean to startle you… but I need to get a nurse in here to be sure I know what I am hearing”. He went and got the nurse. She listened to my heartbeat and asked if I needed to lay down. “No! I just want to know what’s going on!”, I responded. My doctor told me that my heart was racing so fast, that he was very surprised I was even standing. I was on the verge of a heart attack or heart failure. Immediately, he sent me to do x-rays. With those results, he saw what he thought was one side of my heart being larger than the other.
I was then sent to get a ct/pet scan. That is when it was shown that I had a massive tumor sitting in my chest cavity, on my heart. It made extreme sense as to why I was so tired. A heavy, growing tumor was sitting on my heart making it work twice as hard. I was then immediately admitted to a hospital, and had a biopsy done on the tumor. By this time, I had an oncologist. He comes into my room with results from the biopsy… “Jasmine, you have cancer”. While my entire family broke down in tears, time froze for me. I had no reaction. I was blank. It was almost like I didn’t comprehend what was just said to me.
My oncologist brought up treatment options, what it will do to me, and the chances of survival. I started a harsh regimen of chemotherapy in the following days.
The rest is history.
Here are a couple of things I wish I knew before & after my cancer diagnosis:
1. It Is Okay to Not Understand the Medical Terms.
It is not okay to be afraid to ask questions. My oncologist and nurses were so amazing and knew I was always asking questions- so with every medication, I was given a list of their names, what it was, and their side effects. Ask questions! The more you know, the better.
2. It Is Okay to Not Be Okay!
When I got diagnosed, I watched everyone around me break down, be worried, sad, and nervous… all in one. I wish I showed more vulnerability during this time. I was always trying to seem so strong. I was always smiling in pictures and videos. I was always making jokes and making light of my situation… but when the day ended and I was alone, all of the emotions I had been harboring would finally come out. I had an amazing support system- I should have let them see that side of me. My cancer journey was NOT an easy one, and I wish I never made it seem like it was. I was not okay most of the time, but I refused to show that. It is okay to not be okay! When you are physically unable to do something, let someone help you. You are weak for the moment, physically and emotionally. It is okay. That is what you have a support system for. FOR SUPPORT.
3. Knowledge of Losing My Hair Was Not the Same as Watching It Fall Out
I was told that my treatment was extremely harsh. My oncologist gave me a timeline that showed which days of treatment would take a toll on my body. Example: “Day 4, nonstop nausea/vomiting.”
When I tell you that the timeline was 100% accurate… it really was. I knew exactly what to expect, but nothing prepared me for the toll it was all going to take on me. Physically and emotionally.
“First round of chemo- Day 8: Hair loss.”
Okay, I knew this day would come. I was told it would happen when I first got diagnosed. I read it when I got the timeline. But NOTHING prepared me for how I’d feel when I watched it fall out. I was in the shower and washing my hair. Clumps of hair were in my hands… and it kept coming out. I screamed for my sister… I felt complete devastation. I asked her to wash my hair for me… I just couldn’t do it. I knew this day was coming… I just didn't expect it to emotionally hurt me. “I really have cancer. This is actually happening to me.”
I mentally prepared myself to have my head shaved that following week for my second round of chemotherapy. By this time, I was able to pull out my hair without even trying hard. Not only was the hair on my head falling out, but my eyelashes were too. I tried so hard to smile but was so broken inside. Once my head was shaved, tiny pieces of hair were still being left behind wherever I laid or sat. So, I decided to lint roll my head and duct tape the hairs off. Once again, trying to make light of the situation… yet extremely devastated.
4. Chemotherapy Was Going to Make Me Weaker Than I Already Was
How is this even possible? How could I get any weaker than I already was? I was already at my weakest, from what I thought. I knew nothing about treatment and its side effects before I got diagnosed. I learned as I went. Treatment brought me to my knees, literally. I did not know that chemotherapy attacks ALL cells in the body. Even the good ones. I ended up with mouth and throat sores. Dry and cracked skin. Loss of appetite. Flimsy nails. Vision changes. Physical and mental changes. In my fourth round of chemotherapy, I had to get the Neulasta shot. It builds bone marrow. Let me tell you, I felt like I was in the ring with a boxer. Every bone in my body hurt, even bones I wasn’t too aware of. I could not move. I just laid there on the floor. It hurt to move, and I barely had any energy to do so. I was always hot, so I would find myself laying on my bathroom floor because it was the coolest place in my home. I could not even open a Gatorade bottle at one point. I was not ready for this.
5. Make Friends Who Have Cancer or Been Through A Diagnosis
I have to say… I didn’t make my first “cancer friend” until after I started my first round of chemotherapy. She was heaven-sent. From here, I met a couple more people who had cancer. I didn’t meet someone who had NHL, but it didn’t matter. The people I had met all knew exactly what I was going through and how I felt. I was in remission for 5 years, and now 2 years cancer-free and I am still friends with some of them. Some passed, and the survivor's guilt is a whole different ball game, but I know they’d want me to keep fighting and be strong. These friendships are the ones that definitely make a mark in your life. Make some cancer friends, join support groups, and be open.
6. I Will Never Again Be the Same Person I Was Before Diagnosis
This is something I see a lot of cancer patients and survivors speak about, and there is something called our “new normal” that we have to get used to. I look back on photos of life before diagnosis, and I miss the old me. She was brave, resilient, outspoken, always smiling and laughing, so bubbly, and more. This new me is more humbled, quieter, less outspoken, not always smiling… I’m not too sure if it’s a good or bad thing. I feel like I am always on edge. I get a cough and automatically I think “CANCER”. The new me is always anxious, scared, trying so hard not to plan too far ahead. I was not prepared for this. I was so ready to get back to life as I knew it once I heard the words “cancer-free”, but I find myself holding back a little. Is this the new me for good? Will I adjust and make it work? Time will tell. It is still a work in progress.
7. Cancer PTSD And Anxiety Is Real
Scanxiety is real. This is the anxiety I get right before I get my annual scans done. Blood work anxiety is real. Doctor appointment anxiety is real. Something so simple as a cough will send me off the bender. A lump under my armpit that is more than likely an ingrown hair, will send me off the bender. The smell of certain foods I ate during treatment will make my stomach turn. Sometimes I still smell chemotherapy at random times and I’m extremely thrown off for the rest of the day. Natural hair loss makes me cry at the sight of it. You are not alone if you are experiencing this. I hope it gets better for all of us.
8. Life Will Seem So Different After Cancer
Sometimes I will be driving and say “the sky is so blue today… The clouds look extra fluffy… The grass and trees are so green. Aren’t they so… beautiful?”. Little things matter so much more. Something as simple as being able to properly breathe without pain is looked at so differently. Waking up not in pain is looked at more appreciated. Every single thing in life after cancer is greatly appreciated far more than ever before. It’s an amazing thing. Small inconveniences are exactly what they are… small. A breath of fresh air is sometimes the most amazing thing to smell for the day. Things are just extremely different, and it’s something I did not expect.
9. Scars Are O K A Y!
When I got my port and PICC line inserted, I was so worried about staying scared. Looking at my scars now, they’re not just scars. They have a story to tell. I fought for my life. I won them. Cherish your scars, they’re beautiful.
10. Not Being Able to Have Children After Treatment Is A Possibility
Before I started treatment, my oncologist asked me if I wanted to freeze my eggs because chemo will make me infertile. I was seventeen at the time. I was not even sure if I wanted children at the time, but I knew there were other inexpensive options. I opted out and left it in God’s hands. Four years after treatment, I was blessed with my miracle baby. Two and a half years later, I was once again blessed with my second miracle baby. Two healthy babies. Doctors are not always right. Keep the faith up!
11. I Will Lose Friends, And That's Okay!
My diagnosis showed me who was really my friend, and who wasn’t, and that’s okay! Some people weren’t really my friend, and some couldn’t handle my diagnosis. Losing friends will happen, true colors will be shown, and it is okay. Keep pushing forward.
12. Blood Draws Will Become A Walk in The Park
During treatment, I had a PICC line and mediport. I had got a mediport first and it got infected. I had it removed and had the PICC line inserted. However, once treatment was over, I had it removed. I had so many doctor appointments after treatment was over that bloodwork became a walk in the park. The needles don’t even hurt or bother me. Who knew that is something you’d get used to over time? I already know which arm has the best vein, which angles to go, and the routine to get my blood flowing.
13. My Hair Will Not Grow Back the Same
Naturally, I had straight dark brown hair. After I lost my hair and it began to grow back, it grew back SUPER curly and light. Once I cut my hair for the first time, my hair stayed light and wavy. This is my new hair, and I’m loving it. Being bald does not scare me anymore. Less shampoo, less bad hair days. Who doesn’t want that?
14. There Are People Who Are Not Educated in Cancer and Treatment That May Come Off as Arrogant, And That Is Okay. Educate Them, Instead.
Remember, before I got diagnosed, I knew nothing about the world of cancer. There are a lot of people like me. Just educate them. Some people think that cancer is easy to go through because you’re just in a hospital bed all day, every day. They think that once treatment is over, THAT’S IT, YOU’RE BACK TO NORMAL. They think that years later, you should be over your diagnosis. They think that chemo brain isn’t real. They think PTSD and anxiety don’t happen to us. They think we should be happy that we survived. There are a lot of uneducated people who do not understand the things we go through before diagnosis, during diagnosis, and even after, mentally and physically. You’d be very surprised.
15. Just Because Treatment Ended, Does Not Mean I’m Back to Normal Right Away!
Take it easy. Take it one day at a time. Everything will fall into place eventually.
I always say that going through treatment was the easy part compared to life after treatment. Life after treatment really beats you up. You’re trying to regain your strength back, you’re trying to do things you used to be able to do, you’re going to get extremely exhausted a lot quicker, and more. Breathe, and put one foot in front of the other. Walk in life, don’t run right away. It’s almost like learning how to walk all over again (metaphorically).
16. Be Patient During Treatment, You Will Be Able to Do the Things You Used to When It’s Over and You’re in The Clear!
I had a really hard time with this one. Before I started treatment, I was told to take out my belly button ring because I would get an infection. I took it out. During my second round of chemotherapy, I thought I was good enough to put it back in. Boy, did I regret that almost instantly. Right away, it got infected. This almost postponed one of my treatments because I had to get rid of the infection. I should have just waited. It was only a belly button ring, right? At the time, I did not see it that way. I had everything stripped away from me, I just wanted to feel a little bit normal. I didn’t want just wires sticking out of me, I wanted my belly button ring in. I never put it back in until years after I was in remission.
During treatment, I decided to play soccer. The soccer ball BARELY bumped my nose, and I had a massive nosebleed that sent me to the E.R. My blood was so thinned out from treatment, I almost needed a blood transfusion from how much blood I had lost. REALITY CHECK. I was no longer normal. I had to live life with extreme caution. It’s okay, be patient. Later on, I will be able to do the things I used to love.
17. My Immune System Will Never Be What It Used to Be
I am constantly taking precautions to avoid sicknesses around me. I take immune boosters because my immune system has been through it all. I can take care of it to the best of my knowledge, but it will never be what it used to be.
18. Chemo Brain Is Real
I had heard of this term during treatment but didn’t pay too much mind to it since I had a great memory before treatment. I didn’t think my memory would be affected, I was very wrong. Chemo brain is commonly known as memory fog that happens as a result of cancer treatment. Most doctors don’t know why this happens, it just does and there is no known cure for it. Almost 8 years since I started treatment and my memory is NOT what it used to be. Not even a tad bit. It is the most embarrassing thing I have to deal with. I forget many things both big and small. I write a lot of things down on a calendar and sticky notes for reminders because if I don’t, it might just pass me. I tell people stories that I can’t recall telling before and nothing hurts more than hearing “you’ve already told me this.” I wish they would just act like it’s the first time hearing it. Chemo brain is real, and I hope that everyone who is experiencing it finds ways to cope with it. I hope it gets better for all of us. For those of you who have loved ones who are experiencing this, please be patient with them. It’s frustrating for you, but it’s even more frustrating for us.
I would like to think this is all I can come up with, although it is a lot. There are so many different versions of cancer, the things it comes with physically and emotionally that this is just a fraction of it.
I hope that somewhere, I’ve helped someone a little bit just by this post. I hope I’ve encouraged you to be more vulnerable during these hard times and let people help you. I hope I’ve given you strength. Things will get better. Educate yourself and others. It’s one of the best things.
Photo courtesy of author.