The New Normal: Everything is different. Nothing is the Same. But, I Sure Do Miss “Me.”

Part 2: This is really happening. I have breast cancer.

It was all a blur at this point, like watching a movie on fast-forward. I vaguely remember the conversations, but there were, what felt like, hundreds. We don’t just work with one doctor–we work with four. Our cancer team consists of an oncologist, surgeon, radiologist and reconstructive plastic surgeon. Not to mention the dozens of nurses that are there every step of the way.

It truly takes a village to care for a cancer patient. I had no idea the complexity of what had just entered my life!

Mark has decided to show his support by not shaving until I am cured.  I said, ‘not shaving?  How is that showing support?’
Mark has decided to show his support by not shaving until I am cured. I said, ‘not shaving? How is that showing support?’ His response, “I’m going to grow enough hair for the both of us.” I smiled and knew with his presence/support/love, I would be OK.

As you can imagine, my husband is the one taking all the notes at this point. I’ve been told most cancer patients only hear about 10% of what’s being said, due to the whirlwind of having cancer, communicating with all the doctors/nurses, managing a long list of medications, and keeping up with all the appointments. And, with a different doctor’s appointment almost every single day, everything seems to be going at warp speed. Lastly, given the aggressiveness of my triple negative breast cancer, we get new instructions/plans/requests daily that have to be handled STAT! It is totally overwhelming!

Literally within days of our finding out about my cancer, I had to wrap my head around the fact that they planned to nuke my entire body with poison for four months, so we can save my life. And we needed to do it, STAT!

Clearly, this isn’t something we can just spend some time to reflect on and weigh options. With early stage 4 cancer, and a second opinion telling me to not even consider clinical trials and start chemo ASAP, there is almost no time to even think about what is going on. You just jump in and pray for the best.

That’s when I knew this wasn’t just an illness we get medication for and fix. That’s when it all sunk in for me. This is really happening. I have cancer. And the cancer is angry as hell.

You’re going to put that thing where?

The first step in receiving chemo treatments is to install a port...in my chest! Apparently, chemo cannot be administered via a peripheral IV. It was my greatest fear at this point. The idea of having to put me under and install this foreign object in my chest, connecting it to a vein that goes directly to my heart. It sounded like something from The Matrix!

I’ve never had an operation, been under anesthesia, broken a bone, or even had a stitch. I was terrified! For a moment, I even forgot all the worries about having cancer. I couldn’t get my head around what is being installed in my body. This may seem like a small operation for most people but, for someone who has never had an operation, this is now my biggest fear.

Because time was everything, I had the port installed a few days later, AND they also started chemo that same day. So, not only was I under anesthesia in the morning of the port install, we left surgery and went straight to the clinic for my first six-hour chemo session. Mark asked several times if this was something we should be doing the day we start chemo. Everyone said, “No worries.” Looking back, I would not recommend this to anyone...

It was the scariest day of my life. Hands down! I woke up from the operation in the recovery room very disoriented and remember Mark telling me we have to get going to start chemo. One fear behind me, but now another one in front of me. I now have a device protruding from my chest to remind me every second of each day that I have cancer. Mark is now helping me to the car so I can go get chemo. What could possibly happen next?

I asked Mark, “Was that the worst… or is the worst still coming?”

He said, “I have no idea.”

And we sat in silence as we drove to the other clinic to start my chemo.

Chelsea, Red Devil...Red Devil, Chelsea...

Let’s just say, I didn’t pass the first chemo session with flying colors. Because of the severity of the cancer and the combination of the chemo drugs being administered, I had every side effect you could possibly imagine (some exacerbated by the port operation earlier, too).

If you haven’t heard of the “red devil,” then you’ve been blessed with a good life. That’s exactly what they call one of my chemo drugs. Yes, the drug is red, but there is a reason it is not nicknamed red angel. This drug is one of the most aggressive chemo drugs and has some pretty harsh side effects. I guess my partner in crime these days is poison, because it’s the only thing that will save my life. (Ironic, huh?). Once I got over the fact that poison is being pumped through my body, I now think in my head, “It’s on, red devil. Let’s do this!”

Now that I’m knee deep in chemo, all the horror stories I heard came true: weakness, headaches, dizziness, nausea, body aches, skin sensitivity (and that was just about all bodily functions that were impacted). In addition, a lot of simple things got a whole lot harder, like, brushing my teeth, taking a shower, eating, walking my dogs, etc. Thankfully, chemo sessions are every two weeks, so I had some time to prepare for my next session. After my first session, it took me 5 days just to be able to slowly get around the house. Day 6 was the first day I left the house. I was alright overall, but my body ached and my headaches were pain I had never experienced before.

What? I might have brain cancer?

My doctor stressed to us that if anything (ANYTHING at all) is different or has changed, to let her know. That’s why we let her know my headaches were still massive, so we went in for a checkup on my off week. Blood work was alright, a little dehydrated, but she said, “I’m concerned about your headaches. We need to get your brain scanned to ensure the cancer hasn’t spread. Let’s schedule you for an MRI, STAT!”

If that didn’t scare someone, then I don’t know what would. We knew the cancer had metastasized. But did it go further? Was it now in my brain?

First, the hospital called and informed us the first open slot on the schedule is two weeks from that day. Within 15 minutes of informing our oncologist of the delay, magically, we had an appointment for the brain MRI the next day. With everything that was going on, the fact that there is so much urgency (STAT!) around my entire treatment regimen is scary in and of itself. And now, in addition to breast cancer, I may have brain cancer. All night long I’m thinking, WTF?

Luckily, the morning after the MRI, we were told that I was clear of brain cancer. So, now we knew the cancer had not metastasized any more and had stayed localized in my armpit, breast, clavicle and neck.

What a relief. Good news all around. We were so grateful. I may have cried myself to sleep that night. The good cry.

Priorities Change: How I spend my time and money change. Life just changes.

Now, here I sit…with my hair slowing falling out each day. I’m surfing Amazon for cancer books instead of cookbooks. Trying to find the best place to buy hats and scarves to cover my head instead of new house décor or a cool new vintage t-shirt. Everything I’m doing seems to focus on having cancer (kind of like having blinders on and that’s all I can see). Everything is different. Nothing is the same. But, I sure do miss “me.”

I’m just glad that the port surgery was out of the way, the first chemo was out of the way, and I was feeling more human. But yet, all I have to look forward to is to do this all over again every 2 weeks. How do you even wrap your head around that? Especially, when you have no choice.

We headed back to the surgeon’s office to get my stitches out and for her to check to ensure the port is all good. All went well…but by this time, the surgeon also had our PET/CT scan info and let us know that the cancer found above my clavicle is inoperable, so we need to be hopeful that the chemo + radiation in my future can take care of it. But she says, “For now, let’s not focus there. We will keep an eye on it.” I believed her, I have so much trust in this lady.

We finished the appointment and headed back home. Mark says “What do you want to do to celebrate?”

I looked at him with confusion and replied, “Celebrate what?”

“You got your stitches out from your port operation!” he exclaimed.

It was probably the first time I laughed in days. I said, “Actually… I want pizza!”

I was as surprised as he was when he heard the word “Pizza”… because I haven’t had much of an appetite (one of the many downsides to chemo). But, I was craving pizza.

So, we had pizza to celebrate this small milestone.

Mark and I started discussing the doctors’ aggressive plan, that included four months of chemo, then a double mastectomy along with the removal of lymph nodes below my clavicle and my armpit, followed by daily radiation treatment for 6.5 weeks and then, finally, reconstructive surgery. It was going to be a long journey.

For now, I’m just taking it day by day… and I look forward to a break from the cold hospitals and clinics, the feeling of stepping into a whole other world and having to leave what you know behind. I want all that to go away, so I can just get some peace.

Feeling the love.

I knew I’d have the support from my family and friends. However, I didn’t know what help would feel like. You see, I’m a giver. It’s my love language. Nevertheless, to have people give to me meant that all I wanted to do was give back. If I couldn’t give back to them, I didn’t feel whole, and I didn’t feel myself. I felt bad when they were giving me so much love and support. The problem with wanting to give back was that I was exhausted.

All of the texts. All the phone calls. It simply became too much for me. Thankfully, Mark was there to help me sort through all the well wishes. He now takes most of the messages and receives the gifts for me. I’m overwhelmed in all the best ways, but I just had no idea how much people cared and wanted to help.

It’s just a sweet reminder reminding me that there is so much good in the world… even when it feels hard. The goodness of our community has been breathtaking.

And, thankfully there are sunsets… and sunsets keep on giving. My sweet friends and I drove on to the beach (because I didn’t have enough strength to get out there on my own), and we watched the most epic sunset. It was a perfect night… and I think we all were just happy to be there, in awe of our surroundings, enjoying the perfect sunset. What more did I need?

Round 2 and 3: Ding, ding, ding!

For a split second on the beach, I almost forgot I had cancer. Now I’m home and preparing for the next rounds of chemo. Mentally preparing to do this all over again is not something for the faint of heart. Knowing what to expect and reading what people say about the further you get into chemo, the harder it may become. But the nurses reassured me that everyone is different. I might take it like a champ this time, and I might not.

As the process goes, they do my blood work and clear me for chemo. Then, they take me back to my chair, husband in tow ☺ and another 6-hours in the cancer center. The entire day is spent at the clinic once again. My reactions to the second and third round of chemo were very similar. I felt like I had the flu for about six days, days 3 and 4 after chemo are the worst for body aches... the most pain I’ve ever felt. It felt as if my body was covered in bruises and it hurt to even glide my hand over it. From my face to my thighs, this is how it felt. I could barely move. I literally went into the bathroom and undressed so I could look in the mirror and see if I actually had bruises on my body. I didn’t, but it sure felt like it. Eventually, day 6 rolled around, and I felt somewhat human again. Thank God for day six. It’s what I looked forward to.

The cancer will not decide… I will.

This, my friends, is what my life is like now. Appointments, blood checks, chemo, sickness, and repeat. I work in my business on my best days and my crappiest days, because it continues to remind me that I’m human. I haven’t lost myself just yet. But how do I plan for the future while I’m stuck in Groundhogs’ Day? Do I cancel my upcoming vacation or do I go? Do I chance getting sick and having a setback for this whole process? Or do I stay cooped up in my house until it’s over?

Funny how your priorities can shift just like that. Beyond that, I’m ready to take control because, if you let it, cancer will take everything from you. I have decided, no matter how hard, I will own this. I will not let cancer decide everything for me. I will stay empowered! One of the ways I am doing this is by sharing my story. No matter how bad I feel, I want to take the time and give back by raising awareness, so less people have to go through this dreaded process alone.

When my hair started falling out, it was pretty dramatic. I knew it would be, but I never thought I was that attached to it, so I thought I could deal. I did more than just deal. I handed the buzz cutter to my husband and said, “Shave it. Shave it all off.” I’m going to decide when my hair falls out. The cancer WILL NOT decide for me. I’m owning this. And that was that. It was done and over with. I took my hair off; cancer had nothing to do with it! Mark has decided to show his support by not shaving until I am cured. I said, ‘not shaving? How is that showing support?’ His response, “I’m going to grow enough hair for the both of us.” I smiled and knew with his presence/support/love, I would be OK.

But, there was one thing that was still puzzling me. After my husband buzzed my head, I got this eerie feeling about his attitude. In my mind, while we don’t really talk about it, I know what the worst outcome of this disease is. As long as I’ve known Mark, he is always preparing for the worst possible outcome. No matter what he does, he is always planning, checking, double checking, etc., so, if the worst possible outcome happens, he is always prepared. However, he seems to have changed. When it comes to my cancer, he seems to only focus on what would be the best outcomes for me. From chemo preparation, to the surgeries... everything. I finally asked him about this, because it didn’t sit right with me. He is so predictable and now everything I actually thought I understood about him was changing.

So, I asked him. “Why aren’t you preparing for the worst? As long as I’ve known you, you’ve always been the one preparing for the worst, and I don’t feel like you’re really thinking about the severity of this cancer…and planning for the worst thing that could happen should probably be on our radar!”

At first, he responded and somewhat dismissed my question. Then, he came back to me a few days later. Apparently, my question concerned him as he needed some time to reflect why he was being different. Then he explained it to me. He said, “I don’t agree with your perception of how I am acting. What do you mean not preparing for the worst? In my mind, this IS the worst.”

I smiled as now it all made sense again.

Back to Part 1: Click here.

Part 3: Click here.

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