Once somebody has “won” their battle with breast cancer, all of the support that may have been put in place falls away and the survivor is often left confused and isolated. That’s what happened to me. I thought I was alone, but this is something that happens all too often, and many people I know have shared similar stories.
I’ve been told that my turn to have cancer was over and I needed to move on. I never wanted a turn with cancer to begin with. Once you have cancer, you’ll always have cancer. It will just be in remission if you are lucky. Somebody told me they were tired of hearing me whine about how I didn’t feel good. Sure, active treatment ended 10 months ago, and chemo almost 14 months ago, but the damage treatment did to my body was significant. I will never be the same. Taking a daily chemo pill doesn’t help either. Tamoxifen is evil yet is probably keeping me alive.
Instead of deserting the person in your life with cancer, be more present with them once they’ve survived. Cancer is a major trauma. It is indescribable unless you’ve gone through it. They were likely so busy trying to stay alive that once they got the “all clear” signal, that’s when the trauma really unleashed itself. There’s a lot of trauma and survivor’s guilt that must be processed. Check in with your friend. Offer help. Schedule a zoom call. Anything. When the support drops away, we notice it and it is devastating over and over again.
Back in July, I had my 6 month post treatment mammogram on the side where my cancer once was. I was a bundle of nerves, more so than I had expected. In the past year, I have had it beat into my head (by a few medical professionals) that my cancer was going to come back, that it would come back soon, and with a vengeance because of the grade of tumor and how aggressively it began to grow. I’m almost embarrassed at how freaked out I was. I became so thrown off when I went into my appointment because they told me I didn’t have a doctor’s order (not true) and they changed my appointment to only doing a mammogram to the affected side and not a bilateral. No wonder why they made me wait so long after my scheduled appointment time.
When it was time to face the mammogram machine once again, I kept having flashbacks of March 2019 when my cancerous lump was being imaged and all the non-so-silent-whispers of “so sad” were heard. But I knew I had to be brave and find out if my cancer returned, one way or another. Quickly, any thought of fear went out the door and grimaces of pain were all I could think about. A mammogram hurts WAY more after chemo, surgery, and radiation. Holy crap. I also pleaded with the universe to not have an earthquake at that moment. Because you know, southern California.
They reviewed my imagines and found no signs of cancer. I felt a huge amount of relief. A thought I didn’t dare think about finally came through. Maybe I get to live after all?
The past year and a half has been strange. I have planned to both live and die. When you are a cancer patient, there are so many unknowns. I planned to fight and stay alive. I also planned my death so things would be easy for my loved ones who left to pick up the pieces. You may think that’s morbid, but if you were going to die, wouldn’t you want things easier for your loved ones? Wouldn’t you want your wishes honored? I can’t tell you how much peace and comfort it gave me during treatment to have decided where my final resting place would be.
For now, I don’t have to have such a close relationship with death. I know it’s coming, and it’s likely coming sooner for me than the average person. But, I am okay with that. I have to be. For now, I get to focus on living. On making a difference. On writing my love letter to life. And hoping that I have mattered to others.
Thank you for sticking with me.
Once you’ve had cancer and you are in remission, there is always the chance that cancer will come back. With my particular cancer, the risk seems to be the highest within the first 5 years. However, when you are as young as I am, the risk is much higher because I am supposed to have decades left to live. The type of breast cancer I had was extremely aggressive and when it comes back, it often does with a vengeance. I am well aware that when I do die, it will likely be from breast cancer.
This post isn’t meant to be negative. I am generally a very positive person, although, I am also a realist. I always strive for the best and I remain aware of the consequences.
This past month, I have had conversations with well-meaning friends and family, but what they have said to me was very toxic and dismissing of my experience. I’ve been told that I am no longer allowed to talk about my cancer because they knew somebody else that had cancer so it wasn’t my turn anymore. Another person told me I was never going to get cancer again so I wasn’t allowed to think about it. A third was surprised that I still to this day (9 months AFTER chemo and almost 6 months AFTER all active treatment) dealt with nasty side effects from my treatment. They thought I was making it all up to get attention. Believe me, I WISH I didn’t feel like a hundred year old broken down garbage truck, but, here we are. Not all days are that bad, but if you take the chemo pill called tamoxifen, then I am sure you know all too well what I am talking about.
The most toxic of all: Being dismissive of a realistic lifespan for me. I would LOVE to see 40, but I also know that may not happen. Believe me, I don’t want to die anytime soon, but I accept the consequences of being a cancer patient. Nothing is for certain and recurrence is a real thing. I may not live to see 34. I could get lucky and live to 100, but that isn’t realistic.
If you have these kinds of behaviors toward people with cancer or other lifespan altering diseases, please check yourself and consider how this impacts them. Toxic positivity is a real thing and quite frankly, I have had enough.
What’s toxic positivity, you ask? Here’s a recent example from someone close to me. They asked me how I was feeling. I was honest and told them I was having a rough side effect day from my chemo pill. Their response? “Well, which would you rather have? Breast cancer or being dead? You should look on the bright side and be grateful to still be alive!” Crap like this needs to stop.
When I was diagnosed with breast cancer, I had to make the difficult decision on how I would tell the people in my life the bad news. My health had always been a fairly private thing to me due to bullying I experienced previously. But something like breast cancer was pretty significant. I wanted to spread awareness. If I can get cancer at 32, anyone can. Cancer does not discriminate. After sitting with my diagnosis with my inner most circle for awhile, I formulated a plan on how I would break the news to others.
I wanted people to hear it from me directly. Not some rumor where I had people messaging me saying, “I heard you had cancer? Is that true?!” My close family members and friends were called. I wanted to make that voice to voice connection with them because in all honestly, I did not know if I would survive this battle. I wanted to be supportive since for some people, this would be difficult news to hear.
There were friends I messaged directly. Some of them I had naively expected to be my strongest supports. Most of them disappeared from my life entirely. It made me realize perhaps I care for others too much and others do not feel the same.
Cancer brought a lot of amazing people into my life. Many bonds were strengthened. Friendships developed. So many amazing memories. It also removed many people from my life. Once I made my diagnosis public, some people immediately deleted me off Facebook. Some friends stopped responding to me. And others who I thought would always be there, always had an excuse: too busy, their own stuff going on, didn’t want to bother me to name a few. And I get it. I really do. Some people came back around when I was cancer free and that showed me some friends only wanted to be around for the easy stuff and not the hard.
I am much more careful at who I let in and who I chose to spend my time with. And I am forever thankful that cancer taught me who my true friends really were.
My secret project finally launched earlier this month. I opened an online store featuring apparel and accessories for the cancer survivor, thrivor, and co-survivor. Even if you haven’t had first or second hand experience with cancer, many of these items may apply to you.
I’ve spent a lot of time developing designs, sourcing printing companies, and receiving samples. I’m so pleased with how everything has turned out.
Opening a store during a pandemic may not be the best choice in terms of timing. However, time does not stand still and people are still going through cancer treatment. Cancer doesn’t stop for covid-19.
I decided to open anyway because when I was going through treatment, I had wished there was something different available for me. I didn’t want the “breast cancer pink” everything. I wanted simple and more aesthetically pleasing designs to spread awareness.
I’m proud of my work and hope that it helps others. If you have a moment, please check out my work and let me know what you think.
I felt like writing today. It is something I was not sure I would be doing for awhile. Chemo brain takes a lot out of me and often makes me feel like a shell of who I once was. This week, it has gotten a little better.
If you don’t know what chemo brain is, I hope you never have to experience it. It is terrible brain fog that affects my ability in just about everything. It affects my communication skills. It affects me in ways that make me currently believe I could never go back to a traditional job.
Prior to going through several months of aggressive chemotherapy, I considered myself to be pretty sharp. I thought I was funny, and often witty. I had a way with words and could write things that I thought were meaningful and made a difference. I also knew APA like the back of my hand and enjoyed formatting all of my research papers to meet the guidelines. I could read research articles and remember them all and could easily incorporate their ideas with citations into my papers for what would have been my pre-proposal to begin my dissertation for my doctorate. I’ll probably never be able to finish my Ph.D now. That will forever break my heart, though I have found ways to accept it.
Losing my mind was the thing I was most concerned about. I was fine with losing my long hair. I accepted that my body would be cut into and parts of me may no longer look the same. I knew I would no longer be considered beautiful by many. I would be scarred in ways both physically and unimaginable.
It didn’t take long for chemo brain to take its hold. There were days I didn’t even remember my name. There were days I knew my name and forgot how to say it. That may have been chemo brain at its absolute worst. At the time, I fully believed that would be temporary. If you fast forward to today, almost seven months later after finishing chemo – I still have brain fog. Though admittedly, it has gotten better.
Reinventing myself after chemo was a necessity to move on as I grieve the person I was before cancer. I now use different techniques to keep myself on track and getting my work done. I am thankful to be able to work mostly from home so I can take breaks when I need them. I think every day gets a little better and I hope that some day my mind will work closer to what it once did.
It’s been 3 months since I became a breast cancer survivor. Things started to calm down a little and chemo brain lessened its hold. I graduated to seeing my oncologist every three months instead of every two weeks. I am seeing my specialists less and less and in a sense, life is restarting. Now more than ever, the mental struggle has begun. It is what so many others experience if they are fortunate enough to make it through to the other side like I did: survivor’s guilt.
Often, I wonder why I was fortunate enough to survive breast cancer. I think about how lucky I am to live another year when I was not sure I would. How lucky I was to survive almost dying a few times during my treatment. Why did my cancer respond better to treatment than for other people that I know? Why do I get to live when others didn’t?
In many ways, I was very lucky. Finding my cancer was totally accidental and not something even remotely on my radar. Sure, my cancer was a grade three tumor (the worst and most aggressive kind to have) and it grew crazy fast from its discovery until I started AC chemo (also known as the red devil). The worst my cancer ever became was Stage 2B and by the time I had surgery, it had reduced down to Stage 1A. I never had any lymph node involvement nor did my cancer metastasize.
However, I did experience very rare complications that almost killed me. I always tell people the chemo would kill me long before the cancer would. I ended up in the hospital 5 times within a span of two months, 2 of the visits requiring being admitted for days at a time. I experienced extreme chemo-induced nausea, dehydration, and vomiting that was so horrific I could barely function. To stop all these reactions, I was given a medication that I know causes me to go into anaphylaxis. That was a terrifying experience.
Twice, I ended up being neutropenic and one of those times showed signs of infection, though that later was ruled out. A few weeks later, I was back in the hospital after my resting heart rate was between 150-170 bpm and I labored to breathe. I soon learned that I had a pulmonary embolism and the blood clot had just entered the bottom chamber of my lung. It was caught just in time and almost too late. Had I waited, I would have likely died from either a heart attack or stroke. I had to be injected with blood thinners for quite some time and still am on a blood thinner medication.
The worst experience, and one that I have written about previously in the days after it happened, was going into anaphylaxis during my taxol chemo treatment. Feeling my life leave my body so quickly was a terrifying yet calming experience. It made me not fear dying any longer and made me able to push through each treatment, even though I knew it might happen again.
Yet with all those experiences, somehow, someway, I survived. Not everybody gets that lucky. And for that, I often feel incredibly guilty. Why do I get to live on when others don’t?
Recently, somebody I knew from chemo with stage 4 cancer passed away. He was even younger than me. We bonded over our shared birthday – both in January on the same date, although 7 years apart. I remember how bright of a soul he was and was shaken when I learned of his passing. It is a reminder of the grim reality of cancer and that not all of us make it through.
Friday is my 3 months follow up with my oncologist. The days prior to these appointments begin to make me anxious and not knowing what to fully expect. I have been told previously that when you are as young as I am and have a cancer as aggressive as mine, the reoccurrence rate is much higher. I live knowing that possibly is present everyday. Often, this cancer can come back with a vengeance. I can only hope that won’t be the case for me.
Regardless of what happens next, nothing can take away the fact that I made it 3 months, cancer free.
Hello again. It’s been a few months. A lot has happened since I last wrote. I’m currently having a good “chemo brain day” so I figured I would try to get a post in before it comes back to haunt me.
Speaking of chemo brain, I just realized I forgot to take my chemo meds. Hold that thought.
Okay. Let’s begin.
As of January 20, 2020, I officially became a breast cancer survivor. I completed 5 months of chemo, two surgeries, 20 rounds of radiation, and numerous tests, procedures, and biopsies. And then, for a brief month, I got to remove my face mask when going out, lighten up on sanitizing/disinfecting everything, and go to the grocery store on my own. I got to go back to seeing people, going on an airplane, and just LIVING life without being chained to my breast cancer treatment schedule.
At first, I felt okay. I’ve done this before. I spent almost all of 2019 in isolation because of my cancer and how sick I had become. It wasn’t safe for me to see many people. I couldn’t go to the grocery store. The only time I left the house was for doctor appointments. We already had sanitizing and disinfecting procedures in place.
A couple weeks later, I realized this wasn’t going to end anytime soon. Trips planned to celebrate being cancer free were cancelled. Trips to see family were cancelled. Life was put on hold once again. Just like 2019.
In all honesty, it feels like I am going through cancer treatment all over again, except this time, my brain works a little better and I am more aware of everything going on around me. And I would be lying if I didn’t say I was bummed out. I don’t know how much time I have left on Earth (especially because I have a high risk of having cancer again someday due to how aggressive it was) and I am stuck indoors once again.
I do understand and approve of what we are doing to flatten the curve. There are immunocompromised people out there like myself who depend on you to stay home. You could save a life, like mine, by continuing to social distance and stay home. We have to work together (but separately) to get thorough this pandemic together.
There will be a light at the end of the tunnel, even if it seems bleak and far away. It’s totally normal and okay to feel bummed out because your life has been put on hold. That was my 2019. If I can get through an entire year like this battling for my life, you can too.
Stay safe friends.
It’s been awhile since I have written. Not because I didn’t want to, but because I couldn’t. One of my least favorite side effects from going through cancer treatment is the chemo brain. It’s no joke. Sometimes getting words out into a coherent written paragraph was challenging. Or my mind was in another world that I felt I didn’t have the mental capacity to function. It has since gotten better, well, until I had to start taking a chemo pill, and some of the chemo brain returned. I have to take this pill everyday for the next 5 years. But I guess it is better than the alternative.
Since my last post:
I finished chemotherapy. 16 rounds. Done.
I had surgery. It was a successful lumpectomy with clear margins. I also had one lymph node removed, which was benign.
Now I wait to begin radiation. I have to complete 20 rounds.
A lot of life has happened since July. Some things happy and some things sad. I am doing my best to stay positive and spreading love around wherever I go. If I have learned anything in these past few months is live life fully, with love and compassion. Tell someone you love them if you mean it and don’t say it enough. Do something kind just because you want to and without posting it to social media. Do the things you love with the ones you love. And it’s okay to be alone, too. Life isn’t fair sometimes, but we can still find ways to love our life with what we have.
I wrote this post to my Facebook friends on July 31, 2019. I am choosing to share here, after many people have suggested I share in more places. I am also choosing to not edit the post as it is raw and real the day everything happened. Here’s what I learned the day I almost died.
Trigger Warning: Death.
Do you take your life for granted? Please don’t. None of us are promised tomorrow. I almost didn’t get a tomorrow during chemotherapy today. Most people know me as a fairly private person and few get to know me well. I only share this as I hope it will help others.
Today, I almost died during my chemotherapy treatment because the medicine (which I have had twice before) caused anaphylaxis. As a person who has lived with severe allergies (food, medicine, and environmental) my entire life, I have always known how precious life can be. However, this time I experienced anaphylaxis was different because it was so rapid. It was the most painful and scary one to date. I’m thankful for the team of nurses and doctor at chemo who quickly and calmly reversed the reaction and saved my life this morning.
If you have ever wondered if a person who is passing can hear you or feel your touch, they probably can. At least this was true in my experience. Before the reversal medications worked and my life was fading away, I could still feel whoever it was holding my hands and talking to me. It was very comforting and made me feel that if these were my last moments, I was not alone.
In a moment, everything can change. If you can, don’t sit back and think of what you would have, could have, and should have done. If you can make a positive change, do it! Go after your dreams, apologize when necessary, repair relationships that are worth it to fix, step out of your comfort zone when necessary for growth, and most importantly, learn to love yourself – I think it is the most important relationship you have.
Every time I have had a near death experience, I always reflect (long after the shock and recovery is over!) about my life and think about who I am as a person and whether or not I am proud of the person I am and the life I have led. If today was my last day, I can honestly say that I am proud of the person I am and the life I have led. Sure, there are many mistakes made, but I’ve grown from them and continue to learn how to be a better person every day. I know I have more work to do, and I hope life continues to give me that opportunity.