My Humpty Dumpty Life: A Balance Between Love and Pain

For #MetsMonday, Hear My Voice Outreach Volunteer Ishiuan Hargrove shares an entry from her CaringBridge blog about a near death experience in late November. Her entry focuses on the tug of war between the pain she experiences from brain metastases, and wanting to do and see more with her loved ones (and all of you).

Journal#70 - I have a near-death experience

Dear Family and Friends, I had a taste of what a near-death experience is like.  It felt very strange.  About twelve days ago, I woke up feeling like I was standing on top of a merry-go-round, not knowing what happened to my head, and had continuous vomiting.  I knew there was something wrong in my head since I had my third stereotactic radio-brain surgery at NYU in late October.  I’ve had metastatic brain tumors originating from my breast cancer since December last year.  Severe headaches have been part of my life for a year. I have exhausted all the available drugs as part of continuing care so I know very well that I am living on “borrowed time.”  This is the year where I have had four brain surgeries

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Sometimes when I am alone, I wonder if I would know when my moment comes and I also wonder, what will it feel like?  I ran through all kinds of scenarios in my head. I expect that I will know when that moment comes.

As it turns out, my multiple brain metastases had slowly gone through my brain, and there were lots of blood vessels, some quickly, some slowly, leaking blood into my brain.  I guess most people like me would slowly lose consciousness, rely heavily on good pain meds and slowly slip into a coma and die in a hospice settings.

My husband drove an hour to take me to Tampa General Hospital’s ER, to one of the best teams of neurosurgeons in Florida. Upon reviewing my scans, I was immediately admitted to the Neuro-ICU right away.  I really felt death close in on me; I didn’t want to continue to breathe. The pain was so great that it would be so much easier if I just stopped breathing.  I expected my “moment” and I really felt the weight of my cancer journey over these past nine years. All the surgeries piled up on top of each other.  It was as though this is my chance to take the exit. No more physical pain, I could rest and close my eyes forever. As we dropped our ten and twelve year-old boys to our friends and quickly said “good-bye”, suddenly, it hit me that I didn’t say my good-byes properly.  I thought I used up all this body could offer. Did I have any juice left?  Was I at the end of my life?  Wait, was I ready?  I might die peacefully in the arms of my beloved husband and this is more than many people could asked for.

The chief neurosurgeon Dr. Harry Van Loveren came by to see me the next day. He told me the hospital's neuro-tumor board was debating on whether to operate on me. However, he told me he would operate for me.  He didn’t want to send me home to hospice, but he could not fix me permanently.  He asked me, what would I like to do?

I have been preparing to live a shorter life for the past couple years.  Suddenly I felt greedy. I used to pray to live to see my fortieth birthday, and I’ve already had two bonus years; but this is not enough!  I have a roundtrip ticket to Taiwan to see my mom in January 2016.  This year, she was also diagnosed with breast cancer at age of 62 and I have not seen her yet since her treatment started.  I want to use that ticket!

At that moment in the ER, I began to feel like Humpty Dumpty.  Perhaps I could be duct-taped temporarily, however long it could hold me together, before I finally hit the ground.  Who knows. I begged Dr. Van Loveren to take a chance on me, to just let me do some traveling and told him that I know I will eventually expire on the road, but that’s way better than slipping away peacefully in a home-hospice environment.  He said he saw a small candle left in me.

The pain I felt after the surgery was so great everywhere and I remembered asking myself again, why not take an easy exit now? It would be so much easier NOT to open my eyes.  Then I realized that I have worked so hard for the past 41 years to have this life, to establish my relationship with this world.  What a waste if I just quit now!  My heartache would be so much greater if those who I love would have to wake up every day knowing I am gone. They would have to deal with their emotions for many years, but I just need to endure this extra physical pain for a couple of weeks. I saw the look in my husband’s eyes; it was the kind of compassion a human has looking at an injured animal and wanting them to stop suffering. I was very pissed off! I do not want him to want my suffering to stop. I want him to want me to stick around to ask him to help me, to continue to interact with me, to raise our sons together, to experience life with me no matter how much pain there might be for both of us.  I want him to ask me to suffer for his sake and I want him to be as angry as hell as I am, not filled with grief to my end.  I don’t know if after I die I will be in a “better place?”  I have always believed we, with our fellow kindred-spirits, could create heaven here on this earth.  There is no other “better place” I would rather be.  I love this world I live in and I love all my friends and family.  I want to be part of the heaven that we create together.  So far I have only put 41 years of life into it, but I am greedy and I want to do more…..

So with the great pain of an aching heart, I decided to open my eyes and feel every single pain in my body, but I feel alive!  The pain reminds me this is my choice.  I know it was not my time, because I choose to burn my candle more, to aggravate more people, to voice my opinions more, to continue to build a heaven here on earth.  I felt very strong and positive energy coming toward me from all over the universe, from all different sources and I have felt so much LOVE from so many sources that were unfamiliar to me.  I think the LOVE and CARE from all other human being (many I do not even know) brought me back to life.  You made me want to continue to exist.  This was the most painful and most beautiful sensation I have ever experienced.  As I am now trying to pull words from my extremely muggy head,  I need to send this out to all of you who send me this energy. Human beings have this enormous potential to keep each other alive – believe it!  We are all in this world together. We can carry each other; we can be each other’s miracles.

I am going to live my Humpty Dumpty life for now, as long as it serves some purpose.  I know very well my cancer is a time bomb, my brain tissues are paper-thin, and from any slight touch my brain could hemorrhage to death.  My new life from this point needs to be a balance between LOVE and physical pain.

I thought my cancer had taken almost everything from me, but all of you who are reading my journals have put your support, love, heart and hope back into this broken body.  I thank each one of you for being part of my life. Let us continue to build heaven here on earth together!

Love and Merry Christmas,

Ishiuan

Ishiuan Hargrove, 42, is a medical physicist and CEO of her own consulting company, Hargrove Consulting Physics. Ishiuan developed a passion for cancer advocacy and research after her initial breast cancer diagnosis 12 years ago. She was diagnosed with metastatic breast cancer in 2013. Ishiuan lives in Florida with her husband and children.