It’s been 98 days since I found out I have cancer.
98 days. 2,352 hours. 141,120 minutes to be exact.
It feels like a lifetime.
Actually, it feels like a whole different life.
I’m tired of feeling sick and sore...of feeling like my life just stopped and my cancer has started to define everything I do, everything I am. I truly try to make it all different. I push at it with everything I have. But, I’m just not strong enough. I’m too tired, too weak. I just want it all to go away.
As I sit here writing this, I keep rubbing my face because I’m extremely tired and sore from no sleep over the last few weeks. (I’ve been up because of the dreaded body aches and the wired brain from all the steroids. It’s how I spend my nights these days.) I pull my hand away from my face, and I suddenly realize I rubbed most of my remaining eyebrows off. I was hoping they’d stay put, because my eyebrows are the only hair I have left. But, this is life now. It’s official. My eyebrows are almost gone, too.
Needless to say, my figure is not mine anymore either. I look sick. I don't even look like Mr. Clean anymore…more like an alien. Especially when my friends capture the moments we’re together...I don’t even recognize myself in the pictures. I’m all covered up, because I’m freezing, I’m flushed because my body is so damn angry at me, I’m thin because I’m selective these days on what I’m putting into my body, and I move like I’m 100 years old.
In 98 short days my lifestyle has changed, my body has changed…everything has changed. Daily, I dance around the fact that I have cancer….trying to find ways through it or around it or just to simply forget about it. However, it’s there reminding me that no one is safe from cancer, not even me. What I thought to be my healthy 33 year old body, was not so invincible. So, I’ll continue to wake up every day with my new priorities in mind and focus on my cure no matter what it takes...all while being grateful that I am alive.
Even with no eyebrows.
It’s the little things that matter these days. Being thankful is one of those things. The last 3 months of my life have been an absolute roller coaster. Just when I feel like I’m starting to make progress, everything changes. I feel like we’ve taken three steps forward and five steps back. But there’s a growing sense of perspective in the madness of it all. A series of life-lessons, introspection and self-growth.
Oh, the people you’ll meet.
My new life brings experiences that include new friends I am meeting, and together we are sharing a journey. These people are fighting back with me during chemo sessions, scans/tests, and doctors’ appointments. All the while, everyone—the patients, the nurses, the doctors—we’re all just trying to survive.
During one of my chemo sessions, I sat next to a lady who was diagnosed with stage 4, incurable, cancer and had been doing chemo for over 2 years just to “buy” some more time. She mentioned, in a “matter of fact” tone, that she only had about six months to live and the chemo is just allowing her to spend a little extra time with her family. She told us that she’s in the process of building a house, so her husband and her son could start anew once she’s gone. Ugh…I can’t even imagine her desperation and anxiety.
She was literally picking out faucets for her family’s new house the day I met her! I couldn’t believe it. Chatting with her, unless she mentioned it, you would never know her condition. While we were talking, she was accessorizing a home she’ll never live in. I was speechless—ready to just pour tears. I’m sure she’s grieving, but she seemed to be in good spirits and understood the reality of wanting to finish a few more things before giving in to the disease. She was absolutely lovely and comforting. Yet, as I sat there I thought, “How did we get here? Is this really happening?” I was literally holding in the tears. But what I really wanted to do is let the tears flow freely while hearing her story.
Another lady I met during this process really made a profound impact on my journey so far. She was the first person I met at my very first chemo session. We shared a room together. She explained what the medical staff was doing to me, what to expect, and what to do when I got home. She talked about her trials, her frustrations, and her hope. She was very inspiring due to her incredible sass, feistiness, and genuine curiosity when it came to the process. She seemed so in control when the nurses or doctors would talk with her. She wanted to know everything, so she questioned everything. Because it was her body, she bravely took control of each part of it. I admired her for that! And, above all - she will be my friend for life. Not just because she showed me how to use my chemo chair (it’s heated and I had no idea!), but because she’s a very talented artist and she painted a picture of my sweet dogs! My heart melted! She’s now finished with her chemo…and I couldn’t be more proud of her. But, secretly, I’m super bummed because I miss her dearly.
One gal I can’t get out of my head is the one that walked into the waiting room with sunshine just beaming from every part of her body. She was fighting hard just like all of us, has massive cancer, and she comes in all pepped up and read to kick ass. She is one of the happiest people I have experienced…and she made me smile, laugh, and forget (even if for a minute) that we’re sitting there waiting to get poison pumped into our bodies. She was a breath of fresh air, and I always look for her every time I get there (and secretly hope she’s coming if I don’t see her). She’s practically bursting with happiness, and her grace is the absolute best. Even though she doesn’t know it, she helps me get through every chemo session just by being herself.
In addition to the people I’ve met along the way, there’s also been this amazing outreach from people I’ve never met. People that have battled (or are battling) cancer in different states across the country and even in different countries across the world. They have been reaching out to me, sharing their stories…all because I started sharing mine. Alas, the reason I chose to share was with hopes that I’d reach more people with my story and (hopefully!) be a glimmer of light for someone else battling their own battle. Funny thing though…they have been my glimmer of light that have pushed me through the worst nights. Their stories are empowering and have made me feel less alone, less isolated.
I had someone reach out and say, “I know you don’t know me, but I live in the area and I was diagnosed at 36, and it’s all so scary. But if you ever need anything, lunch brought to you, coffee…let me know!”
Later that week I heard from this stranger-friend again… and she said, “I’m running in the 30A half marathon on Sunday and was wondering if you would mind if I gave you a shout out during my run and on social media? When I run I think, if I can make it through chemo, I can make it through this next mile! It’s a big world but with you being so close, I think my energy can help you the most. Is this okay with you?”
Of course I said yes! I was blown away by the support. And to top it off…I finally got to meet this stranger-friend at my next chemo session. She was there doing follow up testing. I hugged her tightly and realized that she, too, will be a friend forever.
I’ve had dozens of people reach out and say things like “I found this lump and I don’t have health insurance, so I’ve not gone in to get it checked out.”
That breaks my heart into a million pieces.
We are starting to understand the process… kind of.
At the beginning of all of this, we thought the chemo process was going to be every other week for four months.
Boy, have things changed.
After our fourth chemo session (and the end of phase one!), the doctor told us that she’d like to try an experimental drug during this next phase. So, phase 2 will be a combination of two drugs: one weekly (normal protocol) and one every three weeks (experimental drug). And to top it off, we have to extend the process an extra month. Meaning goodbye to only having chemo for four months. It will now be at least five months.
I was shocked. Pissed. Bummed. All of that…and so much more!
I was truly feeling like I could see the light at the end of the tunnel, and now everything went pitch black again. Weekly chemo and an extra month to boot—it crushed me! I literally was thinking, “I don’t know if I can do this anymore!”
But, onward I went. Mostly because my husband said I had to. Mark has been my rock and, just when I think I can’t do it anymore, he pushes me and shows me that I actually can. He never gives me a break and I love him for it. I would not be where I am today without him.
So I did what only I could do… I started to mentally prepare myself for this next phase. I was ready.
Here we go, phase 2! Let’s do this.
And then I hear the words, “I’m so sorry, we aren’t going to be able to give you chemo today. Your blood work is not good—you’re body isn’t strong enough to accept the treatment.”
“What does that mean?” I said.
“It means you go home, and we try again next week.”
And it also means my chemo schedule just got extended another week.
I just can’t face this “setback.”
What’s next, universe!?
Oh, right. Thanksgiving. You know the holiday I won’t be able to be with my family, because I’ll be dog sick, in bed, trying to survive due to the chemo the day before.
Thankfully, I was able to get chemo on Thanksgiving week, but unfortunately the next two chemo sessions I was turned away again, because my body wasn’t healthy enough to accept treatment. Now we’re three weeks behind.
Setback after setback… will this ever end?
I guess I need to get used to change…change is the new normal.
Now, knowing I’m not taking chemo like a champ, we discussed the delays with my doctor. She’s concerned my body is not healthy enough to withstand the combination of the normal protocol chemo treatment, along with the experimental drug, so we need to make some changes. As a result, we’re going to remove the experimental drug from my treatment plan completely and see if that allows my blood counts/liver counts to rebound. It’s a bad thing to continually be turned away each week as, without getting chemo, the cancer can grow and become even more angry. That’s why we have to do everything we can to stay on track. Consistency is important at this point (along with a little adaptability and flexibility).
Our doctor is concerned about my blood counts and liver counts as the standard protocol does not have this effect on most patients. As a result, she suggested another CT scan to ensure the cancer has not spread to other organs within my body.
Yeah. Not the most exciting news. Anything that starts with, “Let’s do a scan to ensure there are no other masses on your organs” is never a fun thing to hear, because then my mind wanders into the unknown. What the hell—how is this happening? Is cancer going to kill me? Will I truly get out of this alive? Is this the end?
You know what I’m talking about…those kinds of awful, fatalistic, terrified thoughts.
But, what I know to be true is that my doctor is very cautious. She doesn’t gamble or guess. She wants to rule things out. Even if the CT scan is going overboard, it’s the only way for her to know for sure what’s happening inside my body. She does think it’s the chemo that’s not playing well with my body, not necessarily a mass somewhere else. But we won’t know until we can rule it out.
We sat in the waiting room, waiting to be called back for yet another scan. A nurse came out and said, “Chelsea Berler.”
I stood up thinking I’d be going in, but instead she handed me a white drink and said, “Drink this and we’ll be back to get you in 30 minutes.”
Okayyyyy. (I totally thought she was handing me her Starbucks :) )
I’ve never been asked to drink anything prior to a scan before so I guess this is definitely different. They are doing a specific abdominal scan, focusing mostly on my liver.
So, I drank it.
It was awful. Like, for real. It looked like eggnog, but it was NOT eggnog! Secretly, I pretended it was a really delicious drink (Mark was laughing at the faces I was making. He almost made me spit it out). You know, the kind of alcoholic drink you’d love to have when fears are high. The kind that helps you sit back, relax and say, “I got this--piece of cake!”
But, it’s also been 98 days since I had a drop of alcohol too.
30 minutes went by, and I was escorted back to the CT room. The usual instructions happen. They explain that they are going to inject some type of substance into my port so they can scan and see any activity.
I felt a new strength pop up in me… I blurted out, “No, I don’t want you to access my port today. It’s sore and I’m tired of being poked there!”
I could feel my bottom lip quivering…trying to hold back the tears.
The CT person looked at me with confusion and said, “Normally all cancer patients want to have this done through their port because their veins in their arms are shot at this point. Are you sure? Because I may struggle a bit to find a vein in your arm and that might hurt.”
“I don’t care! Do it through my arm.”
It took him a few tries, but he accessed a vein in my arm, and just for a minute… I felt totally in control. I had this.
For a minute anyway.
I’m ready to face 2018. Are you?
The other day I was driving to UPS to pick up my business mail (yes, I’m still trying to work full-time!)...and I had a moment.
I was driving the speed limit. I wasn’t in a rush and was simply taking in the trees, the big blue sky…and as I saw cars pass me, I wondered what their stories were. Where are they going? Are they hurting? Are they happy? What’s their life like? Do they have cancer? You know… the questions that run through your head when you have a ‘cancer’ filter.
And then I realized that everyone is in such a damn RUSH!
I started sobbing and saying out loud to myself, “Why is everyone in such a hurry? Don’t they know how precious this moment is? And the next?” My life has changed...I don’t know if I’ll ever look at life the way I did pre-cancer again.
I don’t have many fond memories of 2017. Unfortunately, it ends with my being sick during the “most wonderful time of the year!”
It’s hard to look forward to 2018. To be honest, I’m worried. I’m scheduled to have a double mastectomy in the spring, assuming we ever finish chemo (insert sarcasm here). Then, after I recover from surgery, I start six weeks of daily radiation. Then, after radiation, I will need to make a decision about reconstruction. Not to be confused with a ‘boob job’, oh no. It’s all about having skin and muscle cut from either my back, my side, or my abdomen, and then relocated to my chest so they can wrap it around an implant (just so I have some type of “form” there). Needless to say, it’s the most major surgery of them all (way worse than the mastectomy). Maybe I’ll just jump on the “go flat” wagon so I can avoid yet another surgery as, at this point, my medical calendar is so intense I can’t even wrap my head around it.
Although thinking of 2018 right now is daunting, I suppose I am looking forward to the end of this wicked process. While the first 6-7 months will be a long, hard road, there will be a time when I have all of this behind me and am cancer free! My plan is to continue to push forward and not look back. Of course, when times are tough Mark’s strength will continue to carry me forward. I look forward to this same time next year when I can look back on the madness and be thankful it’s over.
I head back to the cancer center tomorrow—hoping I won’t get turned away for my weekly chemo again. Right now, the only thing I hope and pray for is to have a strong enough body to withstand chemo so I can stay on track and move forward.
Last year, I was scoping out a new beach cruiser bicycle for the holidays. This year I hope for chemo...and to be cured.
What a difference a year makes.
How are you going to change the way you live in 2018? Will your health and wellness be your number one priority? If you can do one favor for me (it would be to please make it a priority). At the very least, I hope you “Carpe Diem” the hell out of 2018.
Happy Holidays and Happy New Year!
Part One - Click Here.
Part Two - Click Here.