Deep thoughts by Jack Ha-… Lara

Sometimes, living with stage 4 breast cancer and working full time, feels like living in two different worlds. I have one foot in the “normal” world, and I have the other foot in CancerWorld. I am not a full time cancer patient yet, and that fact never leaves the back of my mind.

I am so grateful that I am still able to keep working, and I truly believe being able to still work full-time job allows me some non-cancer time. At the same time, at the end of the work day, I am mentally and physically drained, as if I am using all the energy I have to perform my job and do so well. Come 5 o’clock, my brain sounds like a long, drawn-out beeeeeep.

At the beginning of the year, I look at my vacation time and occasional absence time and wonder, “Hmm, can I use these vacation days for actual vacation days, or should I save them in case something happens in a couple of months and I need to take time off?” I’m torn between wanting to be optimistic but feeling like I should be pragmatic and prepare myself for potential emergency.

All of this shit is just exhausting. I am coming and going to the pharmacy for my medication, or the hospital for my monthly Xgeva shot and monthly bloodwork. Don’t forget – these medications come with side effects because of course they do. On top of that, I have to get scans every 3 months to monitor my cancer and a year brain MRI for my tumor. I see my oncologist every 8 weeks, and I have other specialists to monitor my thyroid, etc.

I juggle all this and still work full time. By the end of each work week, it looks like a tornado came through my kitchen. I’m just so dog-damn tired. I live alone, which can be a blessing and a curse. I’m glad nobody sees the state of what my house looks like the majority of the time, but then again, it’s just me responsible for cleaning this up. If I could fire myself, I would, but then that would leave Boomer and Mal responsible for cleaning anything up.

I know I can ask for help, but I carry this insane amount of guilt with my illness. I am so damned lucky that as of right now, the cancer is just in one spot and I’m stable. As far as I know, the cancer in my sternum doesn’t appear to be motivated, and my brain tumor does not appear to be impeding my physical or mental capacity. Every damn day, I am grateful that I still have some semblance of health, but it’s like my battery is at 45% charged. I see others with stage 4 breast cancer who are doing so much worse and dealing with pain I have yet to experience.

So I hold back for asking for help because yeah, I’m fine. Am I fine, though?

Like I said, I have one foot in one world and one foot in another. I feel like I should know the answer to that. I’m gaining weight, and I know that my face is just aging. Most of my clothes don’t fit me. My eyebags have bags. I’m new to chronic illness and fatigue, and I’m pretty sure I’m not handling it in any awe-inspiring way.

Maybe I’m fine? It varies day by day, minute by minute, scan by scan.

Such is the life of an oligometastatic cancer patient.

Good-bye 2020

Like everyone else in this whole wide world, 2020 was a giant dumpster fire of bad news, cancelled plans, and overwhelming feelings of isolation. A couple of weeks ago, I underwent my first ever brain MRI that my oncologist ordered. I had been experiencing more headaches than normal, and I had episodes of complete forgetfulness which worried me.

First of all, MRIs in general are just anxiety-inducing procedures to begin with. During my MRI, I did not have any option to listen to music. As a result, I spent the 35 minutes in the MRI tube trying not to think about the very enclosed space and cage around my face. I did try to go to my happy place, but the sounds of VMMMM VMMM DUM DUM WHIRRRRR, or a combination thereabouts, prevented me from going to my happy place.

Also, similar to that gut feeling I had when I pushed my oncologist to order the CT and bone scan, I honestly felt like something was there. Guess what? I was right. (Yay me.)

I have a 9 mm (approximately a 1/3 inch) tumor in the back of my brain. When my oncologist told me that news, I just broke down. When I thought I was just dealing with a met to my sternum, it was one thing. Oligometastatic, if you’re going to have stage 4 breast cancer, is the diagnosis you want because the good prognosis and life expectancy odds are in your favor.

However, the idea that I could be also dealing with brain mets not only pulled the rug from underneath me, it beat the shit out of me with a bat. I mean, come the fuck on. This is a lot for anyone to deal with. I knew that even if the brain tumor turned out to be benign, the fact that I had metastatic breast cancer, a brain tumor, plus all the bullshit that comes with Cowden’s Syndrome, felt downright unbearable.

ESPECIALLY IN A FREAKING PANDEMIC. It’s not like I can meet up with my friends for support, or travel down to my parents house for Christmas like I had really wanted to. I spent Christmas by myself (well, my dogs are with me). As a result, I lost it. I cried a lot, and both my anxiety and depression took the wheel, while I stayed in the backseat curled up in a fetal position. I wrote in a notebook how I really and truly don’t want to be anyone’s idea of inspiration or strength. Let me be weak and cry, and for the love of pete, do not put me on any pedestal. I hate that shit.

I’m human, and I’m doing the best that I can. I’m not going to put on a brave face to make anyone feel comfortable.

Finally, after consultations with a neurosurgeon and my radiation oncologist, my team of doctors all agreed that this tumor looked like a typical meningioma, and where it was located in my brain further suggested that it’s a benign tumor. However, since this was the first ever MRI of my brain, the neurologist can’t say with 99.9 percent certainty without a second scan. If this tumor doesn’t appear to have grown in between scans, she can say with almost complete certainty that this is benign and let’s just keep watching it.

If I didn’t have Cowden’s Syndrome, she would have re-scanned me in 3 months and then 6 months, and then so on. Since I have stage 4 breast cancer, they are going to scan me in 4 weeks or so (pending insurance approval), and then every 3 months for a period of time. We will only talk surgery if it looks like it’s growing or I’m symptomatic. I am a-okay with this plan because I have zero desire to have brain surgery unless it’s necessary.

Oh look, there have been research into the frequency of meningiomas in patients with Cowden’s Syndrome: Hidden association of Cowden syndrome, PTEN mutation and meningioma frequency (source). Fun, super duper fun.

I’m not surprised that 2020 ended with one last punch to my emotional well being. This year, I was told that my breast cancer is now stage 4. I missed out on my own planned 40th birthday party, my beloved niece’s high school graduation, and a trip to Maine with my best friend. I spent every holiday at home by myself. Why not add a brain tumor to the list?

In an effort to put a horrible year behind me, I will do my best to recap and focus on the good things that happened (or, in my case, the not so terrible news):

  • My brain tumor is certainly benign.
  • My cancer appears to be only in my sternum still, not widespread.
  • I still have my job, and in fact, I got a promotion!
  • Management at work has been so wonderful and supportive to me. My boss, and boss’s boss, have been the epitome of caring toward me. I will honestly work for them as long as I can.
  • Countless friends have helped me and showered me with love in 2020. They sent generous gifts, bought Huffman rules clothes, and sent me money. Because of my loved ones’ generosity, I have been able to save more money and prepare myself for the rainy day that is coming, and it is coming fast.
  • Last, and certainly not least, my boyfriend has stood by my side, and he makes me feel like the luckiest woman alive. (Never thought you’d hear that coming from someone who definitely did not win the genetic lotter, huh?)

Yeah, 2020 sucked royally, and my life will never be as it was. It’s okay. If my only win this year was that I survived, I’ll take it.