Limbo Land

On my last visit to Dr. M’s, we waited for him for an hour and a half. If I counted the number of hours Jon and I’ve spent waiting in doctors’ offices for the past five years…but that doesn’t seem like a meaningful activity for someone short on time. After about five min of staring at my rosy cheeks, and declaring that I look better, Dr. M finally answered some tough questions and gave me an account of what will happen to me if I volunteer to stop taking my treatment. I told the doctor that I didn’t want to die fat, ugly, and misshapen, but it turns out I’m gonna do just that if I don’t want to be in pain. Dr. M told me I’ll be taking steroids, which bloats my face and stomach, for the rest of my life. I know some people will tell me I’m beautiful just the way I am. But my physical appearance really matters to me so anyone who truly thinks I look good is either blind, deaf, or down right lies about what they see in pictures. Dr. M and my husband later explained to me that I have two choices; I have to either get busy living or get busy dying! I can wait for a new drug that hopefully prolongs my life. I cannot live in a perpetual state of limbo with no purpose, no goals, no kids, and no job, dreaming of dying but too afraid to stop treatment. I can take myself off my pills and enter hospice care or accept the changes life has forced upon me. Tough choice!

It’s hard to decide not to be on the Earth anymore. Recently, I learned what CLC would do for me during hospice care, which is the way hospitals deal with cancer patients after their bodies can’t take any more treatment or they run out of options. Being in hospice care signifies that there’s no more hope for you and the hospital gives you morphine and sedatives until you feel no pain and just slip away. I’ve often thought of the black nothingness as a soothing option, since I feel I’ve already served my purpose on Earth. But the black nothingness is so scary that I haven’t taken myself off my pills yet. Hence, I’m stuck in Limbo Land hell!

Every morning, since February, I woke up to my jaw snapped tightly shut making my steroid puff, which have taken permanent hold of my face and neck, look even bigger. Before I fall cheek first into a door trying to get from the bedroom to the bathroom, I remember that I am not a normal person. I am “bajar”ing, meaning lowering, on my steroid dosage, which is a good thing. But, I still look quite puffy, especially my cheeks, jowl, and stomach and I have much less energy to do things. Plus the doctor said that the steroids might be worsening my depression. Somewhere between waking up and crunching my face on a door I realize, the first of many times throughout the day, that I was diagnosed with metastatic breast cancer and my life on this earth may be ending. And there’s very little that anyone can do about it. Not my parents, not my sister, not my husband, not my friends… no one…. No amount of praying, shots of toads’ blood (not a joke; I was actually offered some), pill or treatment can save me from the inevitable: dying of cancer. Around ten o clock I become angry at this fact and want to throw things. I should get a dartboard! After five years of being a good little cancer patient, I am angry at my lack of control over the present situation. I lash out at those who are only trying to help me. And I hurt them emotionally. I know I shouldn’t and I don’t want to, but it all just seems too much to take.

I’m a proud woman. I’m a college athlete. I’m highly educated. I get sad and fight about sitting quietly in my “chariot” (wheelchair) because the contrast with what I used to be is so extreme. To go to the local park last month my mother had to push me over cobblestones, potholes, and though wet sand to get me to our destination just so that I could be outside for thirty minutes. Every jostle and lurch irritated me, and made me even madder that I couldn’t simply stand up and walk there myself.   I used to run down long passes on the soccer field for hours, so I’ll leave you to fill in the blanks on the nasty things I said to my mother while she was pushing me, #NastyWoman.

If we managed to leave the house to go do something, everyone stared and then moved out of the way to avoid us. Some even snickered. After surviving the gauntlet of stares and shocked expressions of seeing a 36-year-old woman in a wheel chair, I tried to speak Spanish to people only to receive a dismissive look from them. Apparently, as soon as I sit in the chair, people no longer respect my opinion or give me an opportunity to talk. Ironically, they look at my husband in hopes that he would interpret what I just said not knowing how poor my husband’s Spanish really is. My Spanish used to be fluent and beautiful. Now it is nothing but a mumbled curse, #NastyWoman.

Even my carefully decorated home isn’t so wonderful anymore. I narrow hallways and obstacles are a constant source of frustration because of the width of my new, state of the art walker. I snapped the old one in half getting juice out of the fridge in the morning to take my incredibly bitter steroid pills. Impressive, yes. Painful, oh yea. #NastyWoman curse, you bet.

And this folks, is what we call Limbo Land. Yes, this is where I reside at the moment. Hating everything that has happened to me, and everyone who keeps me in this terrible place. Words that should never get spoken have been spoken, but I’m miserable. How can I accept what I’ve become? How can I be me when I can’t even see myself in the mirror? How can I love those people who force me to take the pills that keep me this way? How?  But, I don’t want to die. I don’t want life to end. I want what I can no longer have and I don’t know what to do about it. I’m angry. I’m sad. I’m scared. I’m madly in love with my husband, but can’t stand the pain I cause him or the pain he causes me by forcing me to take my pills. I’m simply stuck in limbo land.













Total Loss of Independence

I can’t really read this screen to type properly.   I had to zoom in as far as possible and close one eye because my eyesight is horrible with both. Thus the need for my blog posts to be heavily edited by “Eli the Pirate” and all members of my family. So, what you are reading is a team effort. Go Team Eli!! When I get up from the table I am watched and held up until my chariot (wheel chair) appears behind me and I safely fall aboard. I get annoyed by this constant supervision, but I guess I need it. I should also feel lucky to have family members who care so much about me. Last week I had a walker, which I liked better than the chariot because it gave me a lot more independence. I was able to get out of the chariot and feed the swans and flamingos at the park.   However I broke my “toy” during one of my midnight trips to the bathroom or to get my morning pills. So, no walker on our family trip down south to Pucon. BOOOOOO!

What does it feel like to be thirty-five and lose all of your independence? Think of my post about hospital jail and times it by three. Most of the time I feel like a caged fox and I whine and make funny noises to show I am displeased. My family shushes me, but mainly because I am very loud and they don’t want to draw attention to us. Well, they don’t have to worry because the simple fact that I’m in a wheelchair draws attention from everyone. Occasionally there has been laughter; I know that people are laughing at me or the sight of a seven-foot tall man hunched over, pushing me along wearing my cow hat.


My family is doing their best to take care of me, but many of my usual mental activities are difficult to deal with. So is my defiant behavior, as I have definitely earned the title of #nastywoman with my words. I guess I must have gotten a lot worse because every time I move, someone steps out of the shadows to lend a hand to help me go anywhere. Except for sleeping, I am not allowed to be by myself. I am having a lot of trouble typing this blog; I struggle to find the right words on my crossword puzzles and I have a really hard time holding my head up to do the jigsaw puzzles, but I do these things anyway because I used to enjoy them and I hope to enjoy them again. Right now I just watch my fingers shake and drop all the puzzle pieces on the ground. The views of Volcán Villarica from the large windowpanes in the living room were almost grand enough to hold my gaze, but sadly they did not. Jon and I had driven down to the Lake District a few years ago before, but the rest of the family had not. So my wonderful husband and mom braved the winter wind and drove us home with leaves and sticks, and mom experienced her first thermal hot springs as if it were our own series of bathtubs. We ate some good kuchen ( A German coffee cake/cheesecake with fruit or nuts or crumble) and warmed ourselves in front of the wood-burning fire.

  1. The cancer is taking hold rapidly, but I am not so gone yet that I can’t hear. I can hear my loved ones talking about me, and I don’t like it. My speech has deteriorated

(even though everyone says its gotten better. My new voice has totally changed. I can’t sing a word and I sound like Minnie Mouse in slow motion. I need to have someone take me to and from the bathroom, to and from the kitchen for a drink of water in the middle of the night, and to and from the closet in the morning to pick out cotton underwear, a bra, bra cup due to my mastectomy, compression socks to ease the pain of the swelling in my legs, and a scarf and hat so I look relatively normal in public.

  1. If you’ve ever lost the ability to do these things yourself, it is really tough.   No matter how nice the view, it is demeaning to have your husband run a bath for you, wash your hair, and dress you.  It is humiliating to have your mom and younger sister cart you to a meal in your “chariot”. I know what my “chariot” is, and the euphemism is no longer fun. It just makes me feel worse. I look in the mirror on and I have no idea who that person is. But then I look behind me, squinting because of all the light. I think about the people who love me, no matter how handicapped I have become.

Thank you to everyone for all your sacrifices and especially to my family for coming down to South America and having one last trip with me. I’ll never forget it. Thank you to Jon and Meaghan for throwing my first surprise birthday party. Thank you to my Chilean friends for celebrating my birthday a month and a half early. We got to see each other before you went off on your own winter/summer trips. (I still can’t get used to July falling in the middle of winter…) I’m not saying goodbye here, but if we didn’t have a special moment to say goodbye, I will remember our precious memories forever.

Me To Fight Again

Last week I went to the doctors to get some conclusive news about my worsening symptoms. Unfortunately, I had to take new scans, an MRI with contrast and a PET scan, which means that I had to take off my wedding ring from my very steroid swollen fingers, for the 15th time. The results were not great. Dr. C reassured us, again, that his surgery went perfectly, however the worsening symptoms have no surgical remedy, so with that done, he sped out to catch his flight to Japan. Apparently his surgical success meant that I have less of a headache, but I still have to deal with the shaking head, lack of fine motor skills, balance issues, and a weakening tongue. Oh yeah, and I now have to feel a wire that runs from my skull down into my stomach. Well done, Dr. C!

Sometime after Dr. C cheerfully left us to go on his trip, Dr. M came in to share his side of the story. You know it’s bad news when the doctor comes up immediately from the scan room. He didn’t even have to wait for an expert to read the results. And as you know the news wasn’t good. Apparently, the largest tumor has barely grown but the smaller tumors in the meninges portion of the brain are growing and spreading. The meninges is the area between the brain and the skull that helps cushion the brain. Luckily, according to Dr. M, there is still a treatment option. The treatment has a 40% chance of having some success, meaning I can stay the same as I am now or maybe even get a little better.

Now is the time for you to cue up the theme music, Hit Me With Your Best Shot by Pat Benatar, start pumping your fist in the air Kate Harvey style, and scream with me, “I’ll never give up! You can’t beat me!”.

But I’m not fighting an ordinary opponent and I’m getting tired. It’s getting harder every day to stand up to the cancer. It’s a battle I’m not sure I’ll win but I will go down swinging, even if I need Jon, Ali, Mom and Dad to hold me up to fight.

Thank you for all the support you’ve given me through this journey and thank you to all of you who’ve donated to help my family. I couldn’t do this without you. I love you all.





I have some experience (9 years) teaching the belief systems of Hinduism, Buddhism, and samsara, the cycle of rebirth.  Most Indians believe that all beings are born again as a new soul. Life is suffering, so the goal is to end the suffering by exiting the life cycle and reaching nirvana, or its Hindu equivalent, Moksha.  In Hinduism, a soul travels from caste to caste (different social level to different social level), throughout several lifetimes, in order to become a good enough person to exit the cycle of rebirth, and achieve Moksha, a state of being with no more suffering.  I know that many people suffer more than me on a daily basis. I have enough money to lessen my suffering whenever I need to. However, recently life has become too much suffering for me to bare. I take a million steroid and oral chemotherapy pills in the morning, and I spend the rest of the day feeling nauseous with pain in my head and in my right leg, because I haven’t moved around enough; just laid uncomfortably on the couch or in bed till it was time for me to take more pills, or put something in my mouth.

While examining my PET, CAT, and MRI results more closely, the doctors found a layer of tumors in my meninges, that is causing much of the dizziness, the head shaking, the involuntary head bobbing, the 9hloss of memory, and much reduced fine motor skills like handwriting and grasping onto words from foreign languages. The tumors have been there for over a year so they are quite large now. Don’t worry, I had to look up meninges too, and I learned it is a tiny layer of liquid between the skull and the brain. The doctors didn’t see it because they were focused on other, scarier-looking, brain tumors. (of which I have many!) My mom is back down in Santiago, and my dad soon to follow. Hopefully my sister can come soon but she just received a big promotion at work so now is not the best time for her to travel. But I know she will find a way because “A sister is love you never outgrow.”

If you’re already sad, I recommend not reading this post. It’s going to continue to be about sadness and pain and misery. I’m sorry for the need to reach for tissues, but for almost five years now I’ve dealt with my disease by being strong and positive. So please forgive me, as I wipe away the tears as I write this. Sandi, Jon’s mom, has been here taking care of me the past week or so. I really can’t do much by myself so I’m glad she’s here. And I’m sure it’s a relief for Jon who was working full time as well as addressing my needs and taking time off his job to take me to my various appointments. He has been such a wonderful and amazing h

The thing that’s making me the saddest is, I don’t know how to say goodbye…Even though I may look happy in my Facebook photos, I am deeply sad and scared.  To all my friends and family who are going to continue their life journey without me: I love you and I will always be there beside you as you go through life’s big adventures. How do you say goodbye to people who have stuck by you through thick and thin, and made so many sacrifices to be by your side? How do you say goodbye to people who are separately looking for a miracle and want you to live in order to fulfill something deep within their soul? How do you tell your innocent doggie-doos that mommy won’t be feeding them dinner any more? Most of all There’s no proper way to explain to people how a thirty five year old has to be pushed around in a wheelchair, and needs a walker to get around so she doesn’t fall down and hurt herself. But such is my life. With the help of my therapist I will find a way out of my suffering on this planet, so my soul can find release from this cycle of rebirth.


Fighting an Uphill Battle

Recently it seems like every day is Groundhog’s Day, the comedy starring Bill Murray and that chick from the Hugh Grant movie about weddings and funerals.  No matter what I do at night, the morning is always the same. When Jon’s alarm goes off, I wake up dizzy, but I need to pee, even though I am absolutely freezing if I leave the heat of the bed. It’s late fall here, almost winter, so our bed is about as warm as it gets all day long. Heating is expensive here, so we rarely turned it on in the past, and Chileans don’t do insulation. I bet those of you who actually live in a cold place are laughing your asses off about the “cold” temperatures!

After Jon leaves for school, I attempt to go back to sleep, but all I can think about is taking my Nexium pill.  I desperately desire to sort out the heartburn that I developed in the night by lying on my back for eight hours without moving. Eventually I throw the covers on top of my dogs, who just went back to sleep after eating, taking a walk, and jumping on my stomach when the car lights backed out of the driveway. Then, as I attempt to go back to sleep after Jon’s departure around 6:45, Chingy and Kubi bark their heads off for an hour straight like crazy doggies. It’s pretty special. I swing my legs over the side of the bed and attempt to stretch away the night pains, I think only about the uphill battle I’ll be fighting all day long. Every day I start at the bottom of the stairs, even if I climbed up the slope ¾ of the way yesterday.

On my way to the kitchen to take some more of my morning pills, I pass by the guest bedroom, expecting my mom, dad, or sister, to be snoring away inside. Then, I remember that they are gone, I’m alone in the house, and Jon has left for work.   Then I realize that my family and my closest friends live, at least, nine hour flights away. We have close friends here too, but I’m trying to preserve my friend relationships from turning into caregiver/patient relationships. Currently Jon is both my husband and the main caregiver, which we often fight to define. As a patient, I can be very demanding. Jon has to work with a full day with kindergartners. In addition to fulfilling all these roles I have placed upon him. Jon wants to play each roll to the best of his abilities, but there’s no way to perfectly step into any of the three positions asked of him. Unfortunately, right now I need a full-time caretaker, as I can do practically nothing without assistance. I can’t talk properly, I can’t walk, and I cannot see without my sunglasses. When I eat my daily bowl of cereal in the morning I watch my hand shake violently, spilling the milk before the spoon reaches my mouth. I’m having a hard time getting used to this new reality. I don’t want to become helpless at 35 years old.

Because of my short-term memory affliction, which has gotten worse since the surgery, I have lost track of the days of the week, so don’t even bother asking.  If you’re not programmed into my calendar, I’ve forgotten all about you. Sorry! Every day I wake up and get mad that I can’t think of the words for my “Bonza” puzzle, and make a To-D0 list which, of course contains little of what “has” to be done…My list includes things like heat up leftovers for lunch, blog, and clean the bathroom cabinet. The latter stays on the list for weeks; because, really, even if you have all the time in the world, who wants to clean the bathroom cabinet? I keep telling myself to do it, but the bathroom cabinet never gets cleaner…. organizing my shoe and dress closet??? Forget about it.

Last Monday, I ordered an Easy Taxi to take me to Clinica Las Condes (CLC) for my blood work exams. I gave myself an excuse for leaving the house late, per usual. Of course, last Monday, I had trouble with the taxi system and arrived even later to the hospital as a result. Normally I take a taxi by myself, but I found out I can no longer do this task independently. The taxi driver and I had a row about payment, since I had no cash, and only two cards, neither associated with my Easy Taxi account on the new phone. My old phone was stolen, along with all of my cards and IDs at the Tea Connection, a gringo hangout. The taxi driver finally let me go to my exams after I paid for the ride via the credit card programmed into my phone, even though I am definitely not in possession of said card.   I basically fell out of the taxi, and had to walk, by myself, to an entirely different part of the clinic in order to get to the blood work exams. I basically complained and yelled the whole walk there. I hadn’t even bothered to shower and wash my hair, since the appointment was supposed to be fast. Come to think of it, I put makeup in my purse, but never got around to applying it on my face. HAHAHA! I did manage to get dressed, so that meant I was going somewhere, whether I wanted to or not.

In other attempts at being Ms. Independent, I had multiple follow-up brain surgery appointments all fortnight, which I attempted to schedule and attend by myself.   My neurosurgeon called to schedule me a TAC exam (a mini MRI scan) for some time after four, so Jon could attend after work. Originally, the clinic gave us an appointment Saturday morning at nine… they were nice and moved it to ten because I don’t do so well in the mornings. On Friday a friendly nurse called us the to confirm the appointment. I did so, but then the mean nurses at admissions didn’t let us take the exam, because we didn’t have a handwritten “orden” from a doctor. Neither Jon nor I was ever in possession of a handwritten doctor’s note, because the brain surgeon called in the exam himself. I got a little huffy after that, because I definitely had an appointment at that time. Twice I saw my name on the computer screen, which meant I had an appointment scheduled.

After our initial problems with the mini MRI, the nurses at International Patients rescheduled our doctors’ appointments and the Tac exam, so the doctors had sufficient time to look at the scans. One of the nurses, that we love, even had time to call us Monday morning to say they sent over an “order”, and a copy of the guarantee of payment letter by the insurance company. She was leaving that afternoon for her honeymoon. As I learned Saturday morning, you need both documents to take a TAC exam. Apparently, though, you don’t need any ID to take the exam, which I left in a wallet by the computer.

Of course, the rest of the week followed in a similar fashion. On Tuesday, I had my regular chemo treatment, which was recently moved to a different part of the hospital, confusing me no end. This week I’ve had to call Jon away from work twice for help, because the CLC staff are definitely NOT problem solvers. To get anything done requires me to be loud and insistent, not the way my husband prefers his wife to act. Also, not the way I like to act either, but I didn’t want to come back to the hospital when we had already been there, and were going to be there every day for the rest of the week.  The first TAC fiasco happened early Saturday morning. I woke up Sunday morning with difficulty breathing deeply. I tried to lie still, but kept asking Jon if we should go to the hospital. My rib cage felt battered and bruised. After our failed escapade to take the TAC exam scheduled for Saturday morning, Jon was reluctant to go to the hospital. However, after he did some investigating, he found some crazy bruising on the right side of my breast, my chest, and my rib cage. I already had a gnarly bruise in the middle of my chest, where they put the drainage wire, so immediately we both agreed that the hospital was the best place for me. As I tried to figure out how to say “drainage wire” and “shunt” in Spanish, the Urgent Care staff at CLC explained that the bruising on my right side was actually a rash caused by taking a high dose of steroids over a long period of time.  The doctors never tell me anything about the side effects of my drugs, and I really wish they would, so I don’t rush to the emergency room every time something weird happens to me. The breathing problems, the staff explained, most have been caused by the bone metastasis during my original diagnosis in 2012.

“Yeah right; the current breathing problems were not caused by bone metastasis.” Jon and I responded when we were told the news.

“Bone metastasis only occurred during Eli’s initial diagnosis, almost five years ago. It cleared up with all the treatment. Why would it suddenly cause problems now?” we wanted to know.

Apparently the young doctor in the emergency room no longer cared about my breathing problems, once he found out, due to an eco-gram, that I had sufficient oxygen in my lungs to breathe. He and the other skilled doctors and nurses instead zoned in on the more scary-looking wire bruise from the stent surgery, that I’d had for two weeks and actually didn’t hurt at all. As you all are aware, I would not describe myself, or Jon, as easily excitable. In 4 ½ years of dealing with MBC, I’ve only been to “Emergencia” twice.   Judging from the severity of my diagnoses, I probably should have gone more times.

I need to end here by bringing back the theme, or ending with an uplifting thought. Right now, even though I have a therapist I like, I’m not too happy about life. There are too many things to deal with, and too many problems, that I can’t function like a normal human. Jon’s mom is coming down soon to drive me to appointments in the middle of the week and help around the house. Her presence is much needed, to support Jon by helping take care of me. Maybe the brain surgery will start to work soon, and I won’t need another person’s help to walk.  Everyone says I’m getting better, but I disagree. My slurred speech, my increased dizziness, and my shaky hands declare otherwise.   After I put something in my mouth to wash down the pills, I stare at the hospitals’ steps to their eateries for a bit. After a few minutes of contemplation as to why a hospital would have steps without handrails, I pull up my big girl pants. With someone’s assistance, I take a run at the stairs and the uphill battle all MBC patients face. I’m going to give life my best shot… even if the shot’s a bit off the mark because “I’m a little unsteady…” a beautiful song by the X Ambassadors, which I am, unfortunately, not tech savvy enough to share with you!







Jon here: I thought I’d try another attempt at blogging. I did pretty well the first time, so here goes attempt number two. I call it surviving.

For nearly five years, I’ve watched Eli dying. It’s been gradual, with a couple of triumphs along the way, but the reality is, each year something gets taken away. In the beginning, it was her left breast and, three times, her hair.   Then, cancer grew sneaky and took her athleticism. Steroids followed that up by moving in and puffing up her cheeks and gut (which she hates tremendously). Next, metastatic cancer robbed her of her energy and enthusiasm, and last it attacked her mind. It diminished her balance and mobility, while zapping away Eli’s short-term memory and language abilities.

Yet she survives, struggling day-to-day, trying to present a strong image. Every morning Eli wakes up early with me to take a pill that hopefully helps calm her stomach enough so she doesn’t feel nauseous or have diarrhea. Then she lies in bed for an hour or two trying to entertain herself with “BonzaNatGeo”, while she waits to feel better. Whether she does or not, she heads back to the pillbox to take her dreaded steroid pills. These pills keep the swelling down and boost her energy, but bloat her up like a marshmallow, worsen her dizziness, and hurt her already painful stomach. After this, she needs to rest a while before she gears up to do anything; cook dinner, take a walk, go see the doctor, or do whatever small thing us normal people do without any effort. But before she can do that, Eli practices some wizardry with her make up.   That way she looks healthy, and not like a sobbing bullfrog, as she likes to put it. And, for all this, she gets to spend a couple of hours with you, posting selfies on Facebook, while attempting to look like she’s doing great and surviving.

Surviving isn’t easy. It’s downright miserable and unjust. Not only does Eli have to deal with the physical changes in her life, but the mental ones as well. Much of her life is now no longer in her control. Simple things like going for a walk require assistance and liveliness, which she no longer possesses after two hospital stays and a brain surgery. Cooking, cleaning, shopping, and performing virtually any routine task, requires all of her energy to accomplish. More often than not Eli has to rely on someone else to complete the chore. On top of this, she quit her job and has no easy way to earn money. Despite interviewing for her dream job hours after her hospital stay, she recently received a letter that let her know that, although she had the most passion for Chile and its culture, a more experienced travel writer would be writing the guidebook for Chile. Another disappoint for a woman once revered for her brilliance with the written language. With her most recent brain metastasis, Eli cannot go anywhere outside the house, because she can no longer safely operate a car. Even remembering passwords is nearly impossible if they aren’t already written down. Long gone are the days where she can be independent. Now she has to rely on others to do the things she wants to do. This dependence on others is a horrifying prospect to anyone as prideful as Eli. Yet she survives and inspires.

Through all this pain and sorrow, she still lives. The first thing she says to me every morning is “I love you.” She demands a kiss the moment I return from work. She writes blogs, sharing her life with you, hoping that you find joy, comfort, and inspiration from her words. It’s not easy for her to do these things, and she has to fight the depression from taking hold. Eli’s entire existence is currently filled with darkness: the death of her blogging friend in hospice care, a lack of interest and knowledge of education, climate change, foreign diplomacy, discrimination, and much more. Yet in this darkening world, there is a light, a light that makes this husband a happy man. My wife’s perseverance and strength shines brightly like a beacon in a storm. She shows us what is important in life, how to enjoy what’s in front of us, and how to love, even when your whole world is crumbling down. May her strength be your strength, may her love be your love, and may you survive the trials of life as she’s survived hers.

She’s a survivor! “Yes she can!”

Grocery Shopping

Does your family have a fundamental difference when it comes to grocery shopping? Does the way that someone shops for food on a weekly/daily basis make you mad? In all the times that my parents have been down to Chile to take care of me, I think they have seen the inside of the Jumbo store at east sixty times over the past five years.   Every time I look up there they go to get snacks, or meat, or dinner, or lunchmeat, or something. My parents turn the corner from my house and fit the key, as they begin their daily march to Jumbo. Mom and Dad brave the four blocks from the store, laden with heavy bags of juice or wine, as well as a bulging red pack on their back. Thank you, mom and dad, for the support. Without that, our meals would definitely be lacking. And sometimes, when you have little else to live for, a home-cooked meal becomes essential.

Herein lies our fundamental difference to shopping. I don’t know if this is a male trait, but Jon prefers to go grocery shopping every day to buy what he needs. He is a very tall person, and it takes a lot to keep him and my steroids fed. He shops very quickly and does not take the time to look around for the best deal. My parents prefer to spend as little money at the grocery store as possible. I like to think about what we have in the fridge and make lists accordingly. Jon is most definitely not a list person. In fact, if I make a list, he will end up going to the grocery multiple times, as he has most definitely not checked off my list. I prefer to go to the store myself to see what looks good, and buy things accordingly. I do not need one, let alone, two boxes of un-ripened cherry tomatoes. I would really like to shop independently, but I cannot buy groceries in my current condition. I get too dizzy and the load becomes too heavy. I squint and cannot read the labels and prices. I cannot drive the car to carry a heavy load, nor walk home with full grocery bags, so I should be a lot less picky about what I put in my mouth. I should just be thankful for any food whatsoever, but I’m not. I’m mean and vicious when I don’t get what I want. I’m trying to be much more patient, and try to eat little things throughout the morning to keep my energy up. But I end up getting hungry, and sounding like a spoiled brat. I need to stop that.

Without further ado and without an appropriate transition, here goes an all-important public shout out to my parents. Neither my mother nor my father is very comfortable with public praise or any kind of emotion at all. I think my dad, due to his British heritage, enjoys teatime and a well-fought tennis match, much more than the average, red-blooded American. Due to his previous experiences with the disease, I believe he would prefer to keep a stiff upper lip about my affliction, and not mention the word “cancer” at all. Sorry- my blog keeps the family secrets blowing in the breeze.

My mother is also emotionally guarded. I tried to get her to say that Ali looked pretty the day of her beach wedding, but that was a little too much for her.  She taught me a lot about international traveling, little black brochures, and world heritage sites, but not much about how to make it through life with a debilitating disease. None of us knows how to handle that! My cancer has certainly taken its toll on them, their health, their money, and their time. I am really fortunate to have parents who care so much about me, and have been down to visit when the going gets tough. I’m sorry for yelling and getting frustrated when you both are just trying to help. I wish I could be more patient and not get mad at the hospital staff for doing their job.   They are required to do that job and our just following doctors orders. You both have been such a blessing (I hate that word, but it seems appropriate) to both me, and Jon, over the years, so thank you, thank you, thank you. We will never forget it!


Last Monday, I voluntarily checked myself into the hospital to have a little surgery on my brain. The doctors, Jon, and my parents kept telling me it was a normal procedure and that many people have wires and small boxes in their head.   When Dr. M arrived home from vacation, he did his due diligence, visiting me in the hospital and comparing my MRI scans with those I took at Alemana in November. Since there were only possible benefits, the surgical procedure was part of the treatment plan. The surgery may help with my balance and speech issues. It may not improve anything; it remains to be seen.

When I was locked in the hospital the week before, the neurosurgeons were insistent that I have surgery soon to put a stent in my brain to help drain dangerous fluid build up. You see, my head hurt because I had so much swelling, called edema. Since I have never actually seen my scans and know they look bad, I was pretty upset that I was shown them so readily. After a few days, the doctors calmed down, and actually looked at my previous scans of my tumor. It turns out when they actually compared the scans, the tumor hadn’t grown since my last MRI in November. However, the neurosurgeons were very concerned because the tumor is preventing regular drainage of my edema, or intracranial brain swelling. Since there is blockage, and not normal drainage, the stent is meant to circumvent the tumor. Since I have a huge tumor, the box was implanted to allow for natural drainage into my stomach.  The neurosurgeons drew me about 27 pictures of my brain and the blockage. They were worried. According to,

“fluid collection within the brain tissue, called edema, can result from…numerous causes, including infections, trauma, brain tumors, certain toxic substances, extremely high blood pressure” and all those high altitudes I fly and travel to. I’ve agreed not to fly anywhere until I’m recovered.

  1. Right before the surgery I was nervous, because even though it is a relatively normal procedure, afterwards I will forever have a wire and a small metal box in my head. I shut my eyes tightly in order to pretend they were not cutting into my head. I fell asleep to the anesthesia that was administered correctly by a nice anesthetist, and in went the stent. I did pretty well, I thought, as I complained only minimally. Of course the surgery went fine, but I am in pain trying uto find a comfy way to lay my head on a pillow. Try as I might, all I can feel is (it’s not hard…) a wire and a small metal box, which I apparently pointed out too much. I wasn’t in the recovery room too long before they brought me to my parents and Jon in this tiny hospital room on the cancer ward. We all tried to sit in the room but Jon was on the floor, so the three of them took turns spending the night. Even though my curtains opened to a magnificent view of the Andes mountains, I’m not sure anyone slept really well because my steroids could only think about eating the next meal. Everyone did such a good job of feeding me, except the hospital. The food was so, so gross. Who wants to eat a processed manjar cake, a chalky red sandwich on toasted white bread, and canned peaches for every meal? My stomach didn’t actively hurt, but I was bloated for sure.
  2. I wasn’t in the hospital long, because my insurance company couldn’t afford it (go figure!). As I swung my legs around to the edge of the bed, I took joy in the fact that I could go to the bathroom without anyone watching me like during my last experience. What a relief! Unfortunately though, a nurse had to help me shower before I left the hospital. I was humiliated, but running the water over my naked body felt so good. Although I was cold and kept thinking of the showers in the Holocaust, (always a history nerd) the cold water felt good on my body. Due to the surgery, hair was matted to the back of my head with blood. The nurse had to work really hard to get the hair to separate from the drainage box. The back of my head is still matted, and I have a Band aid centered in the middle of my forehead that I can’t remove until Tuesday when I have my post-surgery follow-up. I also can’t clean my hair till Tuesday so that presents a little problem…
  3. I feel the weight of the steroid pills, even though my dosage has halved from what it used to be. Like an acne-ridden teenager, my nose has been a mess with pimples, white and black heads. It is slowly healing itself. My neck and chin have puffed up to the point where I can no longer recognize myself. Before I go to sleep at night, I play a game where I try to bite down on my jaws, as I have full on steroid clench. My mouth is clamped shut from the pills, so it is very painful. For days and days, I had intense and painful diarrhea brought on by the new medicine. Well, it got so bad, that Dr. M had to take me off all medicine, except steroids, in order to clear out the mess in my gut. Next week we will try to reintroduce the more effective oral chemo pill, which was so strong it was choking me and making me pass out in the middle of the day.   The pill made me very sick, so I hope I can tolerate it. If not, I’m not going to take the oral chemo pill, because quality of life is important to me.   I’ve already got many people to support me on that one, including Jon. There’s no point keeping me alive if I’m not myself anymore, and that’s how I feel about that. Obviously I want to take my pills appropriately and stay alive, but not at such a huge cost.

In order to make sure this blog is not one long list of complaints, which it is turning into, I’m going to stop here. I’ve already detailed on other posts how much I hate steroids, and the long-term affect they have on my body. Supposedly, when I feel better from the surgery, I will benefit from less swelling, and therefore, less steroids. We will see how that goes! Ojala…

Hospital Jail


As most of you know, I’ve been in the hospital for about a week, “asserting myself”. Unfortunately, for strong women used to logical reasoning, living in a macho society and sticking up for yourself can be very frustrating.

Two weeks ago I began to have some pain in my brain, not unlike the pain I first   experienced when cancer had taken over my brain and the swelling made it hard to put my head on a pillow. So I scheduled an MRI at Clinica Las Condes (CLC), as I knew that it is slow to do anything medical here in Chile. Amazingly, the MRI was scheduled very quickly the next day.   So, after my impromptu MRI scan on Tuesday, the late night CLC crew threw me into the cardio-ward, and locked the key until Dr. M arrived from his Israeli vacation next week. Too late! The door clanged shut before I could do anything about it and I was captured.

After seeing my brain scans, Dr. Luis, Dr. M’s replacement and my temporary doctor in charge, immediately whisked me away to talk on the phone next to the scanner. He was very worried about my health, and kept talking about the need for emergency surgery. He mentioned many times I was going to drown in all the liquid that was blocked off from spinal fluid not draining around the tumor and into my stomach. Dr. Luis wouldn’t even let me go home for an hour to grab a bag of clothes and toiletries that I knew I would need for my stay. My poor husband had to guess what goods I needed, and all you ladies know that men, god bless them, NEVER get things like that right…

At the beginning of the ordeal, no less than 20 nurses and doctors I had never laid eyes on came into the room. They introduced themselves, but damned if I remembered who they were the next day. There was Dr. Luis, Dr. M’s replacement while he was gone, the speech pathologist, who kindly informed me that I had trouble swallowing.

“That’s news to me,” I said, after touching my tongue back and forth to the roof of my mouth, nose, and cheeks. The physical therapist came to walk me down the length of the hall so I wouldn’t get dizzy. She kept asking me if I was “mareado/dizzy”.  “Yes,” I replied, indignantly, as I turned a corner of the hospital ward. “I’ve had a year to deal with this unfortunate life circumstance. I’ve been dizzy since April, and I have methods in place to help me stay upright.”

There were the day nurses, night nurses, and various doctors and assistant doctors on call. Then there were the women who came to clean my room, my trash, and make the couch, etc. The nutritionist took my food order to see what I would like to eat during my stay in Hotel Las Condes.  It was then that I made the unfortunate mistake of telling her I liked ave-palta sandwiches and natural fruit… which I ate for 15 straight meals afterward. There was also a beautiful Chilean woman who administered a British memory test to me. I had to repeat British phrases to her in her halting English. It was bad! I answered her as best I could, but the questions were so culturally biased, it was really hard to take her seriously. She came in two straight days to give me more vocabulary questions, which I answered in both Spanish and English. She also kept trying to tell me that I did well on the tests.

“Don’t tell me you’re using these results to prove a point,” I muttered under my breath while trying to keep it cool. I could see her heart break a little every time she came into my room. Having to face me every morning, with her worthless (in my eyes) exam results was probably a little too assertive, even for me.

As many people told me, the doctors and nurses were just trying to help me during this time. I understand. If you don’t know me, or my health history, the scans look bad. But Dr. Luis didn’t come across as understanding my long history with Metastatic Breast Cancer, which Dr. M has been privy to over the past four years.   Surgery may be part of the long-term plan, but we just switched treatment medicine, so I expected the first results to be a bit skewed. Turns out, on comparison, my lesions have not grown at all since last scan.  I trust Dr. M to make a treatment plan based on my quality of life as a longtime Metastatic Breast Cancer (MBC) patient, not just as a neurosurgeon, technician, radiologist, or highly competent doctor with condescending bedside manner. I felt like there were two very different perspectives to my surgery issue. One from a neurology point of view, and one from the MBC point of view that I most subscribe to.

Dr. Campos, the main neurosurgeon, came to my room twice a day, to sell me on the elective hydrocephalus drainage surgery. After much thought and prodding, I have decided that since the surgery is so minimally invasive and basically carries no risks, and could even help me, I’ve decided to do it. I’m not thrilled, as you can imagine, with people going near my scalp with knives. However, if people want me to, I will. As I said, the shunt and the procedure are very safe, and the incision very small. My only concern is long-term benefits vs. risks. I have been assured, many times by multiple doctors, that the surgery could only help, not hurt. I might get better, I might not: I have decided it’s worth the risk. If it could help me to walk straight again and enjoy my vacations more, then I am in support. If insurance covers the procedure, I will go ahead with the drainage shunt, as well as a change to my medicine in order to be more effective in the brain. Currently the new drugs are tearing up my stomach. I have some very painful issues going on, and I hope it goes away soon. I am not sleeping or moving off the couch. Neither is my bleary-eyed husband.

So, for now, here I am, at home; recovering from hospital jail. My parents are here to keep me company, and my sister will be coming down soon. I have an interview coming up with Moon travel, which I’ve been dreaming about my whole life. I thought I’d be better a day after the hospital, but I was still so drugged up and dizzy that I barely pulled it together for the Skype interview. My tongue lay heavy in my mouth and I could sense some difficulty talking and making a solid argument. Moon Travel was very nice and postponed the interview. Since she was interviewing for all the Latin American books, I think she was glad to have the break honestly. I earned bonus points for attempting to interview right after a week long hospital stay. Being honest about my health condition may hurt my chances, but I really want to work for someone who knows about and is understanding of my health condition. Wish me luck in the interview re-scheduled next Tuesday!

The Luckiest Unlucky Girl: The End

For many years now I’ve wondered when my blog would end. Well, I’ve decided, today’s the day…

The last few entries have been about my tough times, my misery, and my despair. However, life is about more than metastatic breast cancer. I’m tired of moping about the house waiting for my own demise.   I’m sick of complaining about my bruises and steroid puff. My disease is what it is; nobody can do anything about it.

But that’s not my whole story.  Yes, this particular blog is about cancer- but the history of a life can’t be summed up by one word. If my experience with this disease has taught me anything, it is the knowledge that my life may end soon, or it might be prolonged. The most important truth about death is that no one really knows when the end is coming.

That leads me to the title of the blog… Being diagnosed with metastatic breast cancer at thirty-one, is extremely unlucky. All that I’ve been through: the chemo, the brain radiation, the various pills, is unlucky.   The hair loss, the mastectomy, the debilitating dizziness: all of that is unlucky. In fact, if you look back at these blog entries, my thirties have been consumed with moments of extreme sadness.

However, I have also been incredibly lucky during my lifetime. I have a husband who loves me, a loyal sister, caring parents, and amazing friends and family. When I close my eyes, my heart fills with memories of good times, not bad. A huge thank you goes to everyone who played a role in my happiness. I want to finish with the poem by Ralph Waldo Emerson that inspired this blog in the first place:

To laugh often and much;

To win the respect of intelligent people
and the affection of children;

To earn the appreciation of honest critics
and endure the betrayal of false friends;

To appreciate beauty;
To find the best in others;

To leave the world a bit better, whether by
a healthy child, a garden patch
or a redeemed social condition;

To know even one life has breathed
easier because you have lived;

This is to have succeeded.

Signing off (for now),

   The Luckiest Unlucky Girl