Wednesday, January 29, 2020

Waiting to Wait...

It's that time of year again. That time when I am left anxious with anticipation to determine how the next few months will go. Will I be able to start planning for summer vacation? Will I finish working through the school year? Will I still have hair in the next few weeks? Did the cancer come back? Where did it metastasize to now? My mind has been overflowing with unanswered questions for the past month, just waiting for this scan to hear the results, while continuing to keep up with our day-to-day lives as a family of four with two young kids.

I have to say, I've always considered myself to be a pretty positive, upbeat, glass-half-full kind of girl. Even when I was a kid, I always felt the need to cheer people up and keep smiling. As an adult, not much has changed. I tend to have a smile on my face regardless of how my day is going and can't help but greet people with a big "Hi, how are you!?" whether I know them or not. People think I'm crazy always having such high energy all the time. Someone actually recently asked me how I do it and if I'm always this bubbly all the time. I was kind of taken aback. No one has ever asked me this before but the truth is, I literally cant help it. I like to be happy, as I would imagine most people do, and it brings me happiness to make other people smile. It feels good to interact with positive people so if I can flip someone's day around with just a smile or lighten the mood with a silly joke or a quirky dance move, I'm going to do it! People take life too seriously sometimes and it's too easy to get lost in the ebb and flow of the work grind and stresses of everyday life. Sometimes we need a reminder that it's okay to have a little fun while we do it!

I'm constantly being told how strong and positive I am, especially since my diagnosis. It's what you tell people with cancer, right? You're so strong. You're such a warrior. Stay positive. Don't get me wrong, it's honestly a wonderful compliment and these words can definitely help drive me to want to keep kicking cancers ass. I strive to be strong and positive because I dont want people to feel sorry for me. That would mean that cancer won and I'm not even dead yet! (calm down, we're all going to die some day...) I will do my damndest to never let cancer control my life or take the pep out of my step, but some days are just plain hard. It can be exhausting for anyone to be sunshine and rainbows everyday, but as a woman with metastatic breast cancer, with people expecting you to be strong and positive all the time, sometimes it just sucks. Sometimes you just need to give in to your emotions and fucking cry. Physically ridding yourself of the negativity and taking a deep breath can be so cathartic for me to move forward, take control of what I can and let go of the rest.

For the past few weeks, I have been having some extreme tightness in my left arm. At first I thought it was cording, which is a common side effect after lymph node removal where scar tissue builds up creating what feels like a cord running up your arm. I also noticed that the same arm was feeling achy and weak. Initially, the discomfort would come and go, then it became more permanent. I started doubting the cording and thought maybe it was lymphedema, another side effect after lymph node removal where your arm swells due to improper drainage. I only had four nodes removed though and there really wasn't any noticeable swelling, but I'll hope for the best - there I go again, positive Sarah... But it wasnt going away, so obviously I regrettably turned to Google.

When I was originally diagnosed with bone mets, it was a complete shock. I had no bone pain or any other symptoms to suggest metastases to my spine. If this cancer spreads again, I will honestly have no reference to know what to feel for. I began googling in an attempt to answer my neverending questions, and I started to worry. Yes, even the peppy and positive girl you see everyday gets scared. More and more questions start to flow...Could this be bone mets? Brain mets? Maybe a tumor in my spine is compressing my spinal cord sending this pain down my arm? I find myself falling deeper and deeper into this rabbit hole. I had a PET scan done in August and that was clear, could it be much different already? My next scan was scheduled for Febraury 14th (how romantic...) could I wait that long for results? I tried to make my mind stop. "Sarah, calm down. You've never been this much of a hypochondriac. It's probably nothing!" But what if it was something? Last time I had a serious symptom, I brushed it off assuming it was nothing and it ended up being stage IV breast cancer. How do you come back from that? Let me tell you, you don't. My mind was racing and it wasn't about to stop.

I had an appointment last Monday, and I brought up the strange symptoms. My nurse contacted my APRN who suggested lymphedema, but when I asked about bone mets, she said she could order an xray to be sure. In the middle of putting it all into the computer, she ran into my oncologist and told her about the situation. In comes Dr. T, the most badass woman I've ever met. This woman knows what she is doing and tells it like it is without sugar coating anything which is what I love about her. Everytime I see this her, with the slightest butterflies in my stomach, I just feel content and I know I'm in good hands. She sits down next to me and has me go through my symptoms again. In her nonchalant way, she simply says, "Let's push up the PET to this week and then we can see what's going on". Cue the water works. I actually wanted this to happen just to ease my mind, but the fact that she suggested it before I could even ask made it all the more real. I was scared and I couldn't hide it anymore. She reassured me that she didn't think it was bone mets but we were doing the scan just to be sure. My PET was scheduled four days later.

I was relieved to know that something was being done about my arm and I'd have some answers soon, but not soon enough. I swear I blame Amazon Prime for my impatience! I continued my work week as normal to keep my mind off of it all, but as soon as any down time hit, so did my anxiety. Luckily there's always ice cream to help, but even then I didnt feel much better! Friday rolled around, but my appointment wasnt until 6:30pm. My mom met up with me at UConn to wait with me which was nice since I got there early and they ended up taking me in late of course...

They called my name and the man escorted me outside to the mobile PET unit. Not many hospitals have their own PET scan, so this one goes around to different hospitals to allow people the opportunity to utilize the scan without the cost of having their own. Anyways, we step onto the handicap lift outside the unit in blistery cold New England. He opens the door where we step inside the trailer which wasn't much warmer. Two female techs were sitting in front of computer monitors right in front of us, two recliners were set up behind a door to the right of us, and the PET scan was through the door to the left. The guy has me sit in one of the recliners, checks my glucose level (after fasting since 11am) and attempts to make small talk about the super bowl...sorry, guy, not a big football fan. He ties an orange, stretchy tie around my right upper arm and taps to find a vein. With one quick poke of a needle, we're in. Then, he reached inside a big, silver container with a big, yellow radioactive sticker on it and took out a smaller silver cylinder. Inside is the radioactive tracer that he injects into my arm. While I wait for my super powers to kick in, I lay back in my recliner with no stimulation for 45 minutes. The tech shut off the lights, gave me a blanket, and I am left to relax as much as possible while the tracer makes it's way through my body.

After my 45 minutes is up, I walk to the other side of the trailer to the PET scan. I lay down on the bed of the machine, prop my legs up with a cushion, and they cover me with more blankets. If nurses and techs know how to do one thing, its keep you warm with plenty of blankets! I put my arms above my head and they start the scan. The bed I am laying on begins to rise. Then it slowly goes back and forth, stopping and going, through the machine several times. After about 30 minutes of losing all feeling in my arms and hands, I'm finally done and able to scratch the itch I had on my nose since minute 7! They hand me a paper reminding me to flush my radioactive pee twice when using the bathroom and to avoid close contact with young children for the next 24 hours.....oh, okay....

Now begins the waiting game. Last time, my scan was done Friday morning and results were sent to me that night. This left me to irrationally think I'd actually get results Saturday. Well, Saturday came and went, nothing. Sunday then came and went, still nothing. Are they waiting to tell me in person? Did they find something and need to explain it so they didn't send it to my app? I had another appointment scheduled Monday anyways, are they waiting until then? What is going on!?

I drove to work Monday morning knowing this day was going to go one of two ways. I could either get good news and carry on as if nothing happened, or I could get dreadful news and my life would flip upside down yet again. I finished my last round of tough chemo one day short of one year ago. Was I seriously about to start that up again? I called and spoke with a receptionist who said a nurse would call me back shortly. The nurse called back and informed me that they hadn't even processed the report yet so they will call me back as soon as they hear anything. SERIOUSLY!? More waiting?? How am I supposed to function at work? I could go home but what would that do? This waiting is excruciating! I walk in to see my co-workers and I just start bawling. I wasn't looking for them to do or say anything. All I needed was a safe place to release all of these emotions. The frustration. The fear. The sadness. The anger. I had come to the point after all of this waiting that I was expecting the cancer to be back. When I was first diagnosed, it may sound crazy, but I felt better off accepting that I had cancer before getting the official word. My mantra since then has been to plan for the worst and hope for the best. This time it was no different. I had to prepare myself for this to be cancer again. It might just be some swelling and an easy fix, but it very well might be something more and I just needed to accept that. Of course I'm going to hope that its not, but I just wasn't sure this time.

I brushed away my tears, got a few hugs, and the kids started coming in to start our day. I checked my phone when I could, but still no word. Checked again, nothing...nothing...Wait. I hold my breath and see theres a voicemail. I stepped out of the room and went up to the teachers lounge. I pressed play and put my phone up to my ear while plugging my other ear to be sure I hear every word. It was my oncologist's voice. Oh no, does this mean bad news?

"Hey Sarah, I'm leaving this message because it was a perfect scan. No evidence of any activity...Great news."

And exhale.

Still Sarah.

I am not really sure what to do on here or where to begin. Whether it is to help me, or maybe help someone else, though, it's worth a t...