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!
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You’ve amazed me since the first time I saw you drink beer on Green Beach. (I’d never seen someone so small drink so much.) your methods of amazing me have changed these past two decades, but
remain ever-present. Thank you for letting me be a part of your fight by sharing. You have all my hope and love.
What nice things to say. Thank you fendi
Eli, once again I don’t have the words to know what to say. But your strength is amazing! With having winter coming on and how you’re feeling must be very hard! I’m glad you will have company soon take care of yourself ❤️❤️
Hey! Here’s the link to the song in case you want to share it: https://youtu.be/V0lw3qylVfY
Definitely a lovely song….
Sent from my iPhone
Thanks Ash. I’ll link tomorrow. I always think of you when I watch greys
Sissy- I am so glad I was able to come down and be with you. Leaving you was one of the hardest thing I’ve had to do in a long time knowing that you still needed not only companionship but to help you day to day as well. I know you feel you aren’t getting better but I have the utmost belief that some of your symptoms will begin to improve. Make sure to rest and drink lots of water! 😉 That’s the mom in me. I love you so much and wish we were so much closer. ( also makes me think of a song: https://m.youtube.com/watch?v=JBamoIrhDDY)
Thank you sissy. Gonna listen to the song now and cry
Eli – Over the past year I’ve read your blogs when they pop up, and have, on numerous occasions, hovered my fingertips over the keyboard waiting for words to appear on my screen. None ever do. You leave me speechless. Thank you for sharing so much of your life with us; there’s strength in vulnerability, a strength that emanates from your core. You amaze us. Sending waves of positive energy to you and Jon.