The Luckiest Unlucky Girl

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.

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!

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!