Mexico City Part Two : The Earthquake

Not two minutes before the big earthquake a few days ago, we had just finished a fabulous Street Food Tour run by a competent young chef working for the Eat Mexico Company. Most people don’t care enough to listen to the broken voice of the cancer girl in the wheelchair, but he took me seriously. I learned so much on the tour, ate some delicious food, and felt respected. The young chef had just finished his food tour and loaded us in a cab when the earthquake hit, two hours after everyone in Mexico had their mandatory Earthquake drill and had spilled out of their schools and offices to practice staying safe, a tradition they had kept since the Mexico’s deadliest earthquake of 1985.  The taxi driver carefully backed out into the lane while trying to safely deliver us to our hotel. As the taxi backed up the earthquake intensified. Now I’ve been through much bigger earthquakes in Santiago but due to the modern, earthquake-proof buildings, and the subductive fault lines found in the Andes, the terremoto in Mexico felt quite powerful and dangerous. Since Mexico City is built on a lake, the earthquake just grew bigger and bigger until we were just jumping around in the cab. Eventually the cabbie skillfully backed the car into the middle of the road, while Jon and I  watched the electrical wires to make sure no live wires fell on our taxi. Mom was scouring the buildings ahead of us and above us and noticed that a building, later identified as a school, was swaying ten feet in every direction. Mom promptly shoots, “That buildings going to collapse!”

Debris fell all around us, but we weren’t hit, not even by a leaf. All the students made it out safely and the building stayed in tact, even though there were chunks of stucco and foundation missing, all the way down to the rebar in some places. Although we weren’t right by the epicenter, we were in a neighborhood that was hit pretty badly, la Rosa. We had no idea where we were, but the cabbie left us in a public park and confidently proclaimed that we would be safe here. He was right!   The streets became a sea of humanity as people poured out of buildings to check on loved ones. Since I had lost my phone and both mom and Jon didn’t have their phones on them, communication was a little lacking. Sorry, folks for the unnecessary worry!

Our hotel ceiling played a starring role in the recent Bond movies, and was made of stained glass from Tiffanys, which luckily wasn’t damaged by the earthquake. However, there was damage throughout the building that prevented readmission into the building, even though I had my cancer pills in the hotel. The policemen and firemen were nice enough to go back in and get them for us, since I need the pills to stay alive.   As we looked up, we saw the neighboring Dr. Martens building with some serious foundational cracks in it, We figured then that we weren’t getting back into our hotel and we never did. The Gran Hotel put us up in another hotel, which was just big enough to fit three twin beds in it, one for each of us. The next day we went back to the hotel and again we denied admittance onto the property, so a begrudged staff worker made his way up to our room to pack all of our stuff. By pack I mean jam everything into a bag, smash it shut, and zip it up if possible. Needless to say, items were forgotten.  In the end, I survived an earthquake, lost some personal items and electronics, saw chaos and perseverance, missed some attractions, ate great food, and had an amazing trip with one hell of a story that only the luckiest unlucky girl could tell!

 

 

Mexico City : Part One

Mexico City: Part One

Dieciocho, the week of the eighteenth of September, is Chile’s version of Spring break, and their National Holiday. The sun starts to appear in the sky, making it a little too hot to wear sweaters, the birds begin to sing early in the morning, and Chileans don their huaso outfits, eat empanadas, and dance the cueca, Chile’s national dance. It also marks the beginning of a weeklong exodus from the city to go on vacation to celebrate Chile’s independence from Spain.

We’d heard, from just about everyone that had been, that Mexico City was an absolutely amazing travel destination, and a must-see for anyone living in the Americas. I had booked tickets with LATAM airlines and was looking into their wheelchair policy when the first bit of unluckiness occurred. Unbeknownst to us, anyone with a cancer diagnosis needs to get a doctor’s approval to ride a plane, due to the altitude. So, we talked to one of our newer doctor’s, Dra G. to see her thoughts on our travel plans. After we shared our itinerary the Dra started with a very uncomfortable hemming and hawing that left us both feeling very unconfident in getting approval to go on this trip. Luckily, Dra. MLA, our therapist, talked to Dra G and demanded that we go on this trip. All the doctors who have known me the longest understand and appreciate that a bit of travel always makes me feel better, so our days of worry ended and our final preparations for Mexico City began.

Little did we know that we had also chosen to travel to Mexico City during Mexico’s national holiday. As a result of us getting into town when we did, we got to see a lot of cultural festivities and even take part in a few family games! The unlucky part of the story is that the roads to the center of the city were so crowded no taxi drivers would take us to our hotel in the Zocalo. We had paid extra for our transfer for a handicapped, private truck from the airport and yet no one would take us to the city center due to a belief that it would be impossible to get us within ten blocks of our hotel. They told us to come back in an hour, and when we did, they laughed, and told us they would take us in four, no three, hours.   We were finally taken to our hotel a few hours later after mom had already spent close to 24 hours at the airport. She stayed there overnight in the airport hotel in order to help us with our bags, as Jon had asked her to help out. Of course we experienced hardly any traffic issues on the way to the zocalo, as the taxi drivers had promised.

The next evening we watched the Independence Day festivities from a rooftop bar over-looking the main historic plaza, with mango margaritas in hand. They were, hands down, the best drink we had all vacation and much needed after a long day of walking. We spent the day dawdling around the Zocalo looking into the grand cathedral and the presidential palace to see the Diego Rivera murals, leisurely checking off a few items on Eli’s extensive itinerary.

The following day we journeyed to the ancient pyramids of Teotihuacan where the next bit of unluckiness hit. While I watched mom and Jon eagerly sprint up the pyramids trying to get a picture from every possible angle, I tried to take my own photographs with my precious iphone. Unfortunately, the vibrations from the wheelchair jimmied the phone out of my pocket and into some lucky person’s hand. Our guide pushed me back towards the scene of the crime and sympathetically paraded me in front of the vendors as he kindly asked if anyone had seen a pink iphone. When all was said and done, we left Teotihuacan with limited means of communication with family and friends who we were coming to see me, sore legs, and some pretty bad sun burns.

Beating the Odds

The arrival of October first marks the anniversary of the worst day of our lives. Five years ago on this date, Eli learned of the malignant tumor growing in her breast. She listened while doctors explained that this extraordinarily aggressive cancer had spread to many of her vital organs. The disease had invaded her lungs, scarred her liver, and found a foothold in her brain.

While the doctors remained calm in our presence, their sense of disbelief at the widespread devastation cancer already caused in the body of this young woman was obvious. Taken aback by the utterly cruel nature of Eli’s condition, the team of professionals at the hospital concluded that there was no hope. They believed her time was coming to an abrupt end.

A Stage IV cancer diagnosis equates to a death sentence. Imagine hearing that you have a critical problem for which there is no solution. Consider learning that the finest doctors in the country believe you hold no more than a two percent chance of surviving the next five years.

Upon receiving this ominous news, Elizabeth Swift Timms took a stand. She chose to bravely confront the imminent obstacles in her path and to remain unchanged in her pursuit of joy. Facing bottomless fear with courage and dignity, Eli time and again met challenges no one should experience. She learned to live in an entirely new way, inviting us to come along for the ride.

In the time since the diagnosis, we visited nine countries on three continents. We climbed over mountains, dived under ocean waves, and navigated foreign cities at a furious pace. Our list of travel experiences together grew to include an expedition through the largest wetland in the world, visiting the Galapagos Islands, and an African safari to name a few. Eli has taken me to one paradise after another never letting her diagnosis stop her from doing what she truly loves to do.

Eli never stopped trying to see all that the world gives us; she’s tried to eat it, too. As my growing waistline can attest, we’ve eaten and eaten well. Food is not simply sustenance for Eli, but her passion. She loves fine cuisine, from each aspect of preparation, to the last detail of the presentation. Everything about food is important. Nothing, however, is more important than sharing the event with others.

Over the past five years we’ve broken bread hundreds of times, and the wine has freely flowed. Eli’s food generates its own gravity, drawing people closer to her. Friendships have originated and flourished around her cooking. Almost all of my great memories in Santiago center on a meal she organized. Every milestone, every achievement, every bit of bad news was shared while we ate a sumptuous meal. Eli brought us together and kept us there with her cooking.

Above all, though, Eli has learned to love. For five years, Eli has opened up her heart and shared it with the world. She’s shared every lucky and unlucky moment of her life. She’s learned how to let people into her life so we can marvel at what makes her unique. Most of her life, Eli was highly guarded, always worried about what people thought of her. One was lucky to gain access to her true self, avoiding the detours and fences she placed along the way. Since her diagnosis, Eli has let down her guard and bared her soul. She made herself available, and showed us all what it means to be gracefully imperfect. That vulnerability and openness provides strength and crushes dread.

Eli, what matters most to me is that you opened your heart and let yourself be loved. You allowed this tall, weird, goofy man into your life to celebrate every good day with a kiss and endure every bad day with a hug. I am a man who appreciates you for who you are and cherishes every moment with you. I love you so much and I’m glad we’ve spent this past five years together. Thank you for marrying me and making me part of your family. Thank you for being my wife and my lover. Thank you for supporting me and standing by me. Thank you for being the woman of my dreams.

Finally, thank you for making your stand. You could have been defeated and given up on life. Instead you lived and taught us all how we should live.

Click here to listen to the accompanying music.

And thank you to Elliott Pope for the help.

Visitors

One of the greatest gifts one can receive is the gift of time. I’ve been fortunate recently to receive that gift from dear friends and loving family. Around 6 months ago I was thrown into the hospital for, what we learned later was, a drainage problem of the cerebral fluid from the brain down to the spinal cord. As soon as my family heard they bought their tickets and rushed down to see me. There support helped me brave a week of being a prisoner at CLC. When it came time for me to have surgery, they we were there to see me through it. I was scared, but having them there made it all seem manageable.

My parents and sister came to help out at the beginning.  A couple of weeks passed and Jon’s mom came down to help out for a week. By the time she was leaving Jon knew things were getting bad again and we needed help again.

Mom. I was going back into the hospital to run some test to find out why I was doing so poorly. Like a rock, my mother was there by my side sleeping in a god-awful pull out bed. Her ability to be tough as nails allowed me to take the bad news with some semblance of grace. For, again, I got bad news that my cancer was growing. I found out that I’m down to my last option and we started a new chemo the next day. Meanwhile, my father bought his ticket down and unannounced to me, my sister got a ticket to come down to surprise me. Also, Meaghan, Shannon, and Beth decided to throw a surprise birthday party for me.

All my life I’ve never really had the big birthday bash I’ve wanted. My birthdayis in the summer, and everyone is always on vacation in July, so the celebrations were always small. I’ve wanted to have a surprise birthday party and I’m so thankful for Meaghan, Shannon, and Beth for organizing and giving their time to give me such a wonderful surprise.

But the surprises didn’t stop there. Adam and Paulita flew in from Venezuela to see me. They’ve been some of our closest friends since the day we met them in China. There might not be better people to drink a glass of wine with than Adam and Paulita.A couple of weeks later, I was visited by another dear friend of mine. Britt and her amazing daughter Zella, came back to Santiago for a little visit. Something everyone might not know is that Britt took us into her house before she ever even met us. We became instant friends and have spent many days living in each other’s houses. Britt also brought the cutest girl I’ve ever seen into our lives. Britt and her daughter, Zella Mimi, always makes me smile, and is the first kid to really like me. Just hearing her laugh is the best medicine one can receive. I’m so glad I got to see you two both again, and I promise to try to visit Lima soon.

My closest friend made yet another trip down to see me. I can always count on Randi to be there for me. Even with having the most chaotic and busy schedule on the planet, she manages to carve out time to come down to Santiago and see me. Thank you for being my best friend, Randi.  I also want to thank all of my friends and friends of my family that donated on the gofundme page. I know many of you wish you could come see me and I wish that I could come see you as well. But your donation has allowed my family the gift of more time together, and for this, I thank you all very much. It means the world to us to be able to spend this time together. Thank you.

Throughout all of the visitors my family was here. My sissy managed to give me a week of her life. I know how difficult it was for Alison to come down here amid her new crazy job schedule, moving homes, and Dustin’s work. Yet, she has always been there when I need her the most. A more dependable sister could not be found. Alison was there when I needed a hand. She was there when I needed a laugh. And she was there when I needed a hug. Alison has always been there and will always be there. She is one of the most important people in my life. I already miss my sissy-wissy.

After my sister left we were down to just my mother and father. We settled in for a long haul not knowing whether or not my new chemotherapy would work. Dad, tirelessly worked to make sure that I had everything I needed. He’d run to every pharmacy in the neighborhood, there is like 8 in walking distance, to try and find the medicine that I needed. He visited medical supply stores to make sure that I got the walker prescribed. No matter what, he’d persist until I got it even if it meant talking to twenty different people. On top of all this he’d wake up every morning before anyone else was up and do the dishes, make the coffee, and get the table set for breakfast. Thank you Dad for making sure I got everything I needed to be healthy. I know all the flying isn’t easy for you. I appreciate what you do for me and how you make my life more comfortable. Con mucho amor, papa.

But the person who earns the medal for the most time gifted belongs to my mother. No one has spent more time and been there for me more than my mother has. She’s been my travel partner, care giver, pick-me-upper, and so much more. She cooks, cleans, drives, plays family feud and puzzles with me, and does just about anything and everything for me. I can’t even think of the words that express how thankful I am for my mother. She’s been my rock when I felt like crumbling. She’s been my joy when I felt like crying. She’s been my inspiration when everything around me looked so bleak. No one has sacrificed more for me (besides Jon) than her. She’s given me so much that I’ll never be able to repay her. I love you so much, Mom.

After my mom and dad left Jon’s whole family came down to visit. Jim, Sandi, Adam, Kristin, Harper, Briggs, and, unknown to us at the time, one more yet to be named, made their first visit to our home as a whole family. Harper and Briggs were so excited by everything we did and couldn’t get enough of their crazy weird uncle. Being towered over by the Krumtinger family is intimidating but wonderful at the same time. They are such an easygoing group of people, always laughing and telling stories. Plus they like to play cards and I enjoy kicking their butts in Euchre, Rummy, and Uno. It was so nice getting a chance to share our life with them. I’m thankful for their time and I grateful to spend it with them.

So thank you everyone. You are all amazing and I love you all very much.

 

 

 

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.