All I Found is Love

On Sept. 21, 2022, we got the unexpected news that 2 new tumors were growing in my sister’s left frontal lobe. Maki’s stage 4 Glioblastoma brain cancer came back for the 4th time. After being clear for just 10 months. 

The doctors immediately put her on daily oral chemotherapy until her next MRI (Nov. 16).  Through this time, she was still continuing to work as an RN at Kaiser. 

Maki’s brain tumor support group (Brain Tumor Companion) was hosting a 5K fundraiser race in Arizona at the end of Oct.  They put on the fundraiser in Maki’s honor. To recognize her for beating the odds and living 7+ years since her first prognosis in 2015. This was planned way in advance and before her new diagnosis. 

Despite being physically and mentally exhausted, she was set on going.  Nobody could talk her out of it, even when we tried. She traveled alone, met her group there, and they all stayed together in an Airbnb.

On the evening of the race (10/29/22), I received some alarming news of some cognitive changes. Her group has known her for years, and they knew this was not the Maki they knew. 

Long story short, when we got her home the day after the race, we took her to the ER and they ran an emergency MRI. 

We stayed in the hospital for over 48 hours before we finally got to speak to her neuro-oncologist. 

He confirmed what I had already known when we first took her to the ER.😢

The tumors have grown rapidly. The doctor said that her life expectancy is about 2 months and she would need to be put on Hospice. Because the tumors are on the left side of her brain; mobility, logical thinking, decision making, etc. are all starting to slowly fade away.  She can no longer walk on her own, do basic tasks, or can live on her own anymore. She would need 24 hour care going forward. 

Since the tumors were not responding to chemotherapy, the doctor has decided to stop all treatment. At this stage, surgery and radiation would just reduce the quality of life she has left with us. 

We had to think fast. She was currently living on her own in San Jose, and I live in Santa Cruz. The only way we could make this work would be if she moved into my mom’s house. Unfortunately all of us (including my mom) still have to work and need to manage all of this, at the same time. 

As her primary caregiver, I have been temporarily staying at my mom’s house to take care of her. My family and her boyfriend are all helping to take care of her as well. 

She spent 6 days in the hospital before we got her discharged home. Nothing can really beat that amount of pain and sorrow. 

The crazy thing about this aggressive brain cancer is that things can drastically change in just a matter of a few days. Less than a week before she was in the ER, she was working and driving. 

So for now, I am taking this time to really be with her… In every way I possibly can. Being fully present and enjoying every single second we have left together. It has been 3 weeks of this so far, and this is just the beginning. 

As she’s slowly fading away, she’s not the same anymore. She’s not showing too much emotion. She seems more at ease now. But she’s still here. Just here and there. 

As for me, I am doing ok. Moments of hysterically crying and physically feeling my heart aching. But overall the gratitude I feel to get to be with her has been taking over. I just truly feel so much love now. 

The love has become so strong within me that all the fear wrapped around the unknown of the future has dissipated. I just have this overwhelming sense of faith that we are taken care of. Even though this is the hardest thing we’ve all gone through, I know everything will work itself out. None of the BS matters anymore. All that’s left is love.

I know her angels and mine are working together. And we’re making the most out of the situation we’ve been given. 

Surprisingly, her and myself have been doing a lot of laughing and joking. Sometimes she gets confused, sometimes things don’t work the same, and she just giggles. I can’t help but laugh with her. And fall more in love with her spirit every single day. 

She has always been one of my greatest teachers. Something beautiful about this is how my whole family has been willing to drop everything to take care of her and be by her side. A sort of love and dedication I’ve never seen before. 

Something I’ve come to realize is that eventually everything that has ever lived, will eventually pass. The truth of the matter is that it could be any of us, at any moment. So I’m just grateful that I have the opportunity to let her know how much I truly love and care about her. Something not everybody has a chance to do. 

As I mentioned before, Glioblastoma can double in size in just 7 days. We were fortunate enough to never experience that type of growth until now. 

I just wish it didn’t have to be this way. 💔Home at last <3

 

P.S. I love and appreciate all of you who have reached out and checked up on us. I’ve been getting an overwhelming amount of messages from her friends, and mine. So I apologize if I have not gotten back to you yet. Please know your kind words are appreciated and to please stay patient with us during this time.