I’ve been thinking a lot about ghosts in the last few weeks and more so in the last couple days. It’s part of trying to figure out what happens when we die. And that in turn is a result of not such good scans a few weeks ago and more recently my bout of severe diarrhea that led me to feel like death.

The PET scan was “mixed”, meaning that it showed some growth, some stability and some shrinkage. To me, it proved what my rising CEA had indicated – that the current Erbitux with 5-FU bolus injection is starting to fail. It certainly is starting to fail in those parts of my lungs where there has been growth. My oncologist told me that the “conventional oncological approach to a mixed scan is to continue with the current treatment,” which I understand; milk the drugs for as much as you can before they completely fail. So I agreed to continue but we also agreed that my next scans would be pushed up to six weeks as opposed to the usual three months. My next scan will be next Tuesday, an abdominal and pelvic MRI and a chest CT, starting at 7:45 a.m. I’ll know the results the same day when I see my oncologist so we will then discuss based on those results what awaits me next in the wonderful realm of limited treatment options.

On Friday afternoon, after eating a kale salad for lunch, I started having diarrhea and it went on and on and on until I had emptied everything in my intestinal tract, which also meant waking up constantly during the night to rush to the bathroom. Then, when I dared to eat again, the diarrhea started once more, following the same patterns. The anti-diarrheal medications I took seemed to have no impact whatsoever (although admittedly I didn’t take them as instructed). I rallied to cook for a little Chinese New Year celebration, which entailed my sister and my cousin and her family coming over to eat. I achieved one of my great culinary feats; I made Bun Bo Hue, a famous Vietnamese beef and pork noodle soup, that has its roots in the city of Hue in Vietnam, the city where the emperors once ruled the little empire. I ate it often as a child and it was important to me to be able to recreate for myself and my sister and cousin, as well as introduce our children to, one of our fondest dishes (and memories) from our childhood. I know that one is supposed to eat bland foods in this situation but I just couldn’t and still can’t. So I ate the Bun Bo Hue and it was absolutely delicious, as good as how I remembered it; and then I paid the price. That night, I was completely wiped out and suffered severe chills; my hands and feet would not warm up even though Josh had covered me in six blankets. I chugged water and slept for a while next to the human heater that is Mia and then I felt my body temperature going back to normal.

I never understood until that night the seriousness of diarrhea and dehydration. I mean how hard is it to drink water? But when you’re so weakened from the diarrhea and the resulting dehydration, lifting a glass of water to your lips not to mention actually getting up to get said glass of water, combined with the fear of putting anything in your mouth that might result in more time on the toilet, can seem like a gargantuan effort.

After a night of undisturbed sleep, I felt well enough to take the girls to school on Monday morning and then make a quick trip to Target. But when I got home I collapsed on the couch, overcome by fatigue. I slept a little but otherwise just lay on the couch listlessly, even though I was scheduled to go into the cancer center for treatment. I knew that in my current state, I would not be able to have treatment, but at the least, I knew I should go in for blood work and to talk to my oncologist. But I didn’t feel like I could. I emailed my doctor and nurse practitioner to tell them I was too sick for treatment and that I couldn’t even bring myself to come in. Within seconds my nurse practitioner called me and told me I should really try to come in because I likely needed IV fluids.

In that moment of feeling so awful and being told that I had to actually go somewhere, I lost my composure and broke into heaving sobs. In those sobs was all my self-pity for suffering like this, for being afflicted with this disease that will kill me. And also embedded in those sobs was all the physical pain of the diarrhea and the deep cuts in my hands and feet, all of which had led me to say to Josh during the preceding days, that this shit wasn’t worth it; that I’d rather die that tolerate this crap. I’ve always known that if I were a spy for the CIA and I was tortured by the enemy, I would divulge any secrets I knew; I don’t handle physical pain well.

My babysitter, or actually my children’s babysitter (although she might as well be mine too), found me crying hysterically and called my sister. My sister came within half an hour to take me to the cancer center. She stayed with me through the blood draw and the visit with the doctor (who rolled his eyes at me for not taking the anti-diarrheal medicine as I should have) and then the infusion of one liter of fluid and potassium – the loss of potassium is a common consequence of diarrhea and when potassium levels become too low, the heart can suffer arrhythmia. So lesson to self and others, don’t disregard the seriousness of diarrhea and dehydration.

I’m feeling much better. I was just ranting this morning about the NYC Department of Buildings to my sister since they still have not approved the combination/renovation project; my sister said I’m obviously feeling better. I detest incompetent, inefficient government bureaucrats!!!! Some asshole is holding up further work and costing us tons of money as my valuable time is ticking away.

Back to ghosts, which is the whole point of this post. I’ve been thinking about ghosts and spirits a lot during my sadness at hearing my scan results and while lying awake after a run to the bathroom when I was convinced that this bout of illness was marking the beginning of the end.

Notwithstanding what others may believe, I’ve always believed in ghosts, that there are spirits that hover over us after they died and left this world. Although I’m not one of those people who sees ghosts, I suppose I believe because the stories of ghosts and spirits have been a part of my family’s history (not to mention Belle’s inclination towards seeing them).


In Vietnam, on the road outside our house was a Vietnamese woman who sold tobacco every day, squatting on the dirt before a cloth that displayed her wares. The name by which we and most everyone called her translates literally to, “Woman Number Seven Who Sells Tobacco.” Back then people were often identified by the number representing their birth order, despite the fact that they had proper given names. She was the seventh child in her family and to clarify further because obviously there were other seventh children born to other families, we added the “selling tobacco” as an additional identifier. Anyhow, Woman Number Seven had a deceased grandfather whose spirit would return through the body of a teenage village boy; the boy could never remember what had happened with respect to the spirit after he had been possessed. Whenever the spirit returned, the boy would peddle his bike to Woman Number Seven’s house, at which point Woman Number Seven would send word to my paternal grandmother that his spirit was present. My grandmother would then go to her house, frequently taking my mother with her. The grandfather’s spirit would often tell my grandmother what numbers to pick in the local lottery – she was an avid gambler – and she would win. But his spirit also advised on much more serious matters, matters of life and death.

My sister, who is six years older than I, developed cataracts at an early age. I suspect they were present in some nascent form when she was born but they didn’t become evident until she was older, maybe around age 4. I of course had much more pronounced and obvious cataracts at birth. In any case, neither of our vision problems could be addressed in Vietnam, with even less hope of successful treatment after the Communists won the war.

People fled the country at the time of the Fall of Saigon in 1975 but those early refugees tended to be the Vietnamese who feared reprisal for having sided with the South Vietnamese regime and the American forces. The ethnic Chinese weren’t truly incentivized to leave the country until the new policies of nationalizing all private property came into effect. The ethnic Chinese, as was true in other parts of the world, tended to be merchants, driven by a seemingly innate compulsion to buy and sell and to make money. That was certainly true for my father’s family, where the entrepreneurial spirit to run our hardware business dominated family life, where any notions of non-business pursuit such as academia or even politics were scorned for their failure to generate true wealth. The Communist State was of course geared towards crushing any sense of entrepreneurship or individual wealth accumulation. In fact, they sought to redistribute wealth in accordance with the Marxist ideal of true equality. In particular, they invaded and occupied our home and the homes of others with any modicum of wealth and confiscated anything of value, including all of our business inventory and even personal property like toilet paper, pencils and paper, all theoretically to give to the impoverished masses.

By 1978, the ethnic Chinese, robbed of their economic freedom, and others were searching for means of unsanctioned escape. Given the clandestine nature of these escapes, it was often the young single men and women who dared to brave the voyage on rickety fishing boats to places like Hong Kong and Macau with the hope of eventually reaching a better place. Everyone dreamed of the United States, but other countries such as France, England or Australia would also do. My 3rd, 4th and 5th Uncles, my father’s younger brothers, were the young ones in our family so they were the ones who dared.

But it was my mother who was the most daring of all. She asked her brothers-in-law to take my eight-year-old sister with them in the hope that my sister would arrive in a place where her vision could be treated. Now that I am a mother I can imagine how difficult it must have been to let go of her first-born child, to know that there was the distinct possibility that she might never see her child again, that her child might die in this journey into an unknowable and unimaginable future into a hoped-for place she’d only glimpsed in movies and fairy tales. I’m not sure I would have had the courage to make the same decision no matter how strong the promise of the American Dream was. My mother tells me now she wanted me to go with my uncles too but I was just two years old and way too young to thrust upon someone else.

My sister left and weeks and months went by with no word from the uncles. Mail back then could take six months or longer to arrive, if it arrived at all. My worried mother went to consult the spirit of Woman Number Seven’s grandfather when he appeared. He told her that indeed my sister had arrived in America, that she was safe and that all was well. Weeks later, my mother received a letter and enclosed within was a picture of my sister posing with the glorious Golden Gate Bridge behind her, wearing her new American-bought clothes and sporting new glasses.

As it turned out my sister and her fellow 171 travelers were quite lucky. Their boat broke down in the middle of the ocean and they were rescued by a passing American cruiser. My sister recounts to me stories about how she was the first person to board that cruiser and how she was thrown into the arms of a bearded American from the little boat to the big ship because she was too small to manage the rope ladder that was constantly jerked about by the current and how they had to time the toss just right so that the tiny boat and the towering ship were as close as possible as the waves undulated beneath them; a poor toss would have landed her in the water — like most people from Vietnam, she didn’t know how to swim. All of the refugees on that boat survived, staying at a refugee camp in Malaysia for an unusually brief time before being welcomed to this wonderful country. My sister resettled in San Francisco where she received treatment at the children’s hospital there. Her vision was practically restored in its entirety.

The following year, when the Vietnamese government permitted the legal departure of the ethnic Chinese due to its border dispute with China, we and the huge remained of my father’s extended family seized the opportunity to flee. With the government’s help, we found a boat. We turned over whatever property we had left and the gold that had been buried in the ground next to the well in the back. My grandmother and mother however paid one last visit to the spirit of Woman Number Seven’s grandfather, asking him if they should indeed leave, if this was the right decision (since by then frightening stories of people drowning and dying at sea were trickling in). The spirit declared that we had to leave for this would be the last boat departing from our part of the country, that if we didn’t leave now we would never leave. We would find out later that shortly after our departure, the government terminated its policy of allowing the ethnic Chinese to leave and that there were indeed no boats that left (at least legally) after ours.


I realize that many who hear these stories will still not believe in ghosts, and that is perfectly understandable. These are my beliefs and my beliefs alone. (I have vowed, however, to my close friends and family who do not believe that I will come back to haunt them after I am dead and then they will believe.)

While I believe in the existence of ghosts and spirits, I also believe that souls represented by these ghosts and spirits eventually move on to something else, whether it be into a new life or another dimension in time and space, somewhere where the soul has a chance to experience more of this universe and to learn, for ultimately, I believe in the evolution of the soul, that the meaning and purpose of life is to enrich the soul with all the joys and heartaches that this life and other lives can impart, that once the soul has learned as much as it can with all its wisdom and knowledge it enters what the Buddhists would call Nirvana and what Christians might call Heaven and a closeness and even oneness with God.

I know there are many who believe that there are no ghosts or spirits, no Heaven, no reincarnation, that death represents nothingness, that there is simply oblivion after we die, that this life is all we have. When I was little, I read Piers Anthony’s series called the Incarnations of Immortality. The first book was about the Incarnation of Death with the Angel of Death coming to end people’s lives when their time came. I don’t remember anything from those books except one statement and image. The Angel of Death said that anyone who believes in nothingness after death will experience nothingness. When he reached into the body of a man, who was a staunch atheist and did not believe in any kind of afterlife, to remove the mesh of translucence that represented his soul, the mesh simply disintegrated within the Angel of Death’s hands, and it was gone. Some thirty years later, that image still remains with me, perhaps it was disturbing to me to think that my soul could just disappear just like that or perhaps I was drawn to the notion that whatever we choose to believe will become our own reality.

Since my diagnosis, I’ve witnessed so much determination to remain alive at all costs, sometimes with a disturbing maniacal frenzy that defies the most unimaginable level of physical and emotional pain. Many claim that this determination is born of a desire to remain present for their loved ones. As I’ve written before, I believe such determination is really born of a fear of death and not knowing what awaits. No doubt my unwavering belief in ghosts, spirits, reincarnation and the evolution of my soul is what makes me unafraid of dying, that indeed it is these convictions that will prevent me from clinging maniacally to this life and in some respects makes me look forward to death These beliefs lie at the heart of the enduring, evolved and thoughtful peace that I seek to find with my own death.

What I have said and what I continue to say to those who live with death perpetually lurking, some with it much closer than others, is this: Believe what you need to believe in in order to find comfort and peace with the inevitable fate that is common to every living thing on this planet, whether it be nothingness or Heaven or reincarnation or ghosts; death awaits us all; one can choose to run in fear from it or one can face it head on with thoughtfulness and from that thoughtfulness, peace and serenity. The truth is no matter how vehemently anyone argues for or against the existence of God, Heaven, ghosts, reincarnation or any other existential notion, there will never be an answer or an objective truth, at least not in this life. So believe what you want to and even must believe and just maybe it will become your reality.

13 Comments (+add yours?)

  1. erika hanson brown
    Feb 09, 2016 @ 20:56:03

    I do, Julie!
    I love learning more and more about you.


  2. Chrissy Rice
    Feb 09, 2016 @ 21:28:08

    Thank you for the wisdom I have been seeking for about dying.
    Julie you can’t imagine how freeing the last part of this message was for me. I have the answers I need to move ahead into my own after life. I know think that it will be whatever I believe.
    That it is mine to declare. It is my life and my spirit. I don’t have to follow or believe anyone else’s truths. I own it.
    You are like the spirit of the 7th woman to me.
    Love you and your spirit.


  3. Eliza
    Feb 09, 2016 @ 23:16:28

    Thank you, Julie.


  4. Damion Hancock
    Feb 10, 2016 @ 00:14:59

    I’m not great at praying, but I’d like to make an advance request for Ghost Julie wisdom.


  5. beckywdesigns
    Feb 10, 2016 @ 01:40:02

    Julie, my doctor told me that the mind is the most important. If we keep on thinking the “gray” or “dark” side, whatever you’d like to call it, it will not help. I am with you and can totally understand what you said and how you feel. You got to continue to be strong and keep your fighter’s spirit up up and up!

    Once, I had diarrhea for three weeks and everyday due to 5-fu. My doctor reduced the dose, and the diarrhea disappeared. I also took Imodium. It seemed to help as well.

    My nails are brisk, my hair is thinning, and the skin is extremely dry and sometimes hurts. So what? I told myself to move on and live as normal as I should. I have been working as usual and receiving the treatment everyone other week for 2 years already.

    I just had the PET/CT scan three months after having Erbitux. Mine showed reversed radiotracer activity. Some nodules are calcified. The cocktail I am having is Erbitux and Folfiri. I am wondering why you aren’t having Campto (A.K.A Irinotican) with 5FU. My doctor said that Erbitux works effectively if put together with Irinotican.

    I don’t remember when I cried last time as I have stopped thinking about my condition. I enjoy my life more than ever and look forward to every day of my life. I even got into a new hobby (jewelry making) in addition to my full-time job as a professional piano teacher. Making jewelry takes away my worries and attention to my cancer condition.

    Julie, I pray for you. Please keep fighting! Oh, I go to Hong Kong to visit a Chinese herb doctor who was recommended by a student’s mom. She specializes in cancer. If financially allowed, try the Chinese herbs to strengthen the immunity so that you can be strong enough to fight cancer.

    Rebecca Wu


  6. Jean Di Carlo-Wagner
    Feb 10, 2016 @ 10:45:13

    I believe. And “I feel better believing”, so that’s the simple truth for me!~Love you! Jean


  7. Kathy from Calgary
    Feb 10, 2016 @ 12:56:34

    Thank you Julie. Your words have touched me yet again. The image of your sister being tossed into that boat brought tears to my eyes. And your thoughts about our personal beliefs and the after life were just what I needed to hear right now. I’ve always had a strong urge to believe in something, and now that I’m surrounded by atheists, it’s hard to admit I believe. It’s seen as a weakness, because I can’t handle the truth of “nothingness”. I feel like you’ve given me permission to believe, even if it’s just something I need to get through life. It’s okay, and we might just be right.

    Thank you. And hugs from Canada.


  8. Tina
    Feb 12, 2016 @ 23:11:27

    Julie ,I always keep checking your blog to see if you have a new post.You say it like it is and that’s what keeps me hooked. Your words are rich with emotions and you show us the frightful reality a cancer patient must deal with every day while still being strong for their family and ease their worries.I consider it an honor to know a strong woman as you!


  9. Won
    Mar 04, 2016 @ 19:25:13

    Thank you so much for sharing your thoughts and emotions. I look forward to reading your posts


  10. Christine
    Mar 12, 2016 @ 21:51:55

    Hi, Julie. My mother was diagnosed the very same month that you were with nearly the same diagnosis and I have been reading your posts (and relating to them directly) since. My mom passed in August of 2014. From a daughter’s perspective, know that yours will be okay. Wishing you the very best.



  11. Trackback: Mortality :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

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