The Luckiest Unlucky Girl

So… Jon took off work this morning to drive me to my very important MRI appointment. I had filled out all of the paperwork last week and sent it in to the hospital and someone from Clinica Alemana even called to confirm the appointment. Unfortunately, when we got there, it took forever to check me in. When the nurse came back she said “I’m sorry- Ms. Timms. But due to internal telephone issues this weekend we will have to reschedule your appointment.”

Apparently the MRI machine broke over the weekend so they pushed all the appointment back but no one bothered to call me. They called the International Patients office instead, since they were the ones who booked the appointment. Only problem- the International Patients section isn’t open Saturday afternoon or Sunday so they never got the message. The MRI staff didn’t even bother to look up my phone number in their records to give me a call so I wouldn’t show up. I find it hard to believe they wouldn’t have my phone number in their system since, over the last three years, I have probably been to that hospital a gagillion times.

After much complaining on our side, we reluctantly took an appointment for tomorrow at 3:30. I told the nurse that this was a very important exam and that I’ve been waiting three months to find out if my cancer treatment was working. I told her that I had an appointment to review the results on Thursday and that they need to be ready before that for my mental health. She promised that they would be. We booked the new appointment and went up to International Patients to complain some more and figure out what happened. After a few phone calls it became clear that they weren’t to blame. They also were nice enough to let me do my blood work today very quickly so that I didn’t have to come in tomorrow morning again.

So, tomorrow my friends. Jon will have to take off work again which is what we were most pissed off about, but I need to have that exam done. Hopefully the results will still be ready by Thursday.

Spring seems to have sprung this week in Santiago. The sky has morphed from cloud-covered grey to pristine blue. Chingy and Kubi now spend afternoons sprawling themselves on the sun-kissed patio instead of stealing my blankets on the couch to warm themselves. My hairless head doesn´t scream out in terror when it emerges from the steaming hot shower to find freezing cold temperatures in the house. Temperatures have been in the high 70´s during the afternoon now, and I have made a concerted effort to place myself in the way of the sun´s rays every day. With the arrival of spring, my mood and my energy level seems to have risen as well. This non-winter weather almost makes me want to run and spin about in alpine meadows singing, “The Hills are Alive”. But I don´t own a nun´s habit and the nearby Andes with their tip tops covered in snow might put Julie Andrews´s hills to shame.

I´m not going to lie. I haven´t been feeling so great this past month. I once did a college research project on Seasonal Affect Disorder and am entirely certain that it´s a real thing and I have it BAD. Those of you who live in grey, wintery conditions most of the year, I have no idea how you do it! In the mornings I´ve barely been able to lift myself from my prone position in bed to say goodbye to Jon, the dogs groaning and flipping over on their backs to catch some more z´s after their morning walk. When I finally was able to drag myself to the couch and take my pills with a bite of banana or cereal, I wrapped myself in a fuzzy blanket and did some serious binge watching on Netflix.   (By the way, that feature on Netflix where the episodes of the show keep playing unless you actively press the remote and stop them from appearing is both genius and the worst thing ever.) Showers seemed like so much effort, that sometimes I just didn´t get around to it, although I knew it would make me feel better. Anything appearing on the calendar seemed more like a prison sentence then an event to look forward to. Basically, I was against anything that required an ounce of energy at all. I also felt extremely nauseous. And for a person who loves food and cooking, this was complete torture. Whenever your doctor tells you that you need to wean yourself off the drugs they give you, it means that the drugs are very strong and your body will become dependent on them in some way. During my period of withdrawal, I felt very sick in the morning, and my heightened senses made me want to vomit at the sight or smell of anything edible. I´m sure those of you ladies who had violent morning sickness during pregnancy can relate.

But luckily, with this new, warmer weather, I have felt more like my normal self. This weekend, Jon and I participated in the annual Scottish Caledonian Ball in which Scottish-Chileans don kilts and hop around to organized dance routines with names like the “Gay Gordon”. What: you aren´t sold yet? Well, there is also a good deal of bagpipe playing, a whiskey bar, and a served dinner.   Nido usually has one or two tables of participants and our eight-some had a blast chatting with each other and skipping and hopping to the music. We had only practiced as a group twice, but we did a pretty good job of remembering the steps. And in between ¨The Waverly¨ and the ¨Dancing White Sergeants” we gladly showed off our hip dance moves and enviable singing chops to 70´s disco tunes and the medley from Grease. Although the pictures that I did not buy indicated that I looked a lot puffier than I thought I did in my dress (NOT fishing for compliments, just telling the truth through my eyes), I was at least able to make myself look respectable at a dress-up event. And Jon and I had such a good time. I can´t remember the last time I smiled and laughed so much, even while dancing on a painful sprained foot. It was glorious! (The white wine that flowed freely into my glass for the first time since I had been diagnosed helped to ease the foot pain.)

As those of you in the Northern hemisphere ease out of summer into fall, I´m sure birds chirping and springtime flowers probably isn´t the most fun thing to hear about. But I have spent several months trapped indoors in my sweats due to fatigue, rain, and poor, poor, air quality, while watching pictures of sand and sun and summertime fun appear on my Facebook feed. It´s time for me to join in the fun. Ya llego la primavera!

It has been awhile since my last blog so I thought I’d update you all on what’s going on… and… that’s not really a whole lot. Jon’s mom came down for about ten days, which was really nice, and gave me a reason to get showered in the morning. Yes- sometimes I need those… The two of us went down to Santa Cruz for the weekend with Jon and experienced some of the Chilean wine valley that Sandi had yet to visit. It was a really nice trip.     Other than that, I’ve just been extremely tired. I’m almost done with my steroids, which means I don’t have any energy from the drugs and am really feeling the effects of the radiation. It’s like I went from Ellen Burstyn maniacally vacuuming her living room in Requiem For a Dream (disturbing movie) to having the energy of a sloth. Not fun. I do have good hours but I have to plan my activities pretty carefully so that I have a rest time in between, sort of like a small toddler or infant.

I’m also ready for winter to be over and for warmer weather to come about. Chile doesn’t believe in insulation so it’s colder inside the houses than outside here right now and some days all I can manage is to move from one warm blanket to another in the quest to stay warm. Spring is just around the corner but while Sandi was here we had a cold spell with lots of grey days, rain, and snow. During that time I switched from sleeping in a hoodie with the hood pulled down (not comfortable) to a warm beanie in order to keep my bald head from getting cold. I vowed to ask the first bald male I saw if winter was a little rough for them what with all the temperature changes. They quickly responded yes, so I felt validated by my winter headgear.

I, of course, haven’t spent all my time just hanging around the house. I did manage to show Sandi some places she had not seen before. Such as closed restaurants and shops. (Lesson of the day: don’t go to Barrio Italia on a Monday, cause it’s not open…)   Jon and I are also partaking in the Scottish Caledonian Ball next weekend so on Sunday we practiced some of our dances. Watching giant Jon hop around like a Scotsman is a bit of a hoot, and I also learned I am entirely out of shape. Oh well, it will be fun.  I’ve also been doing a lot of reading and have delved into some very good books recently. I seem to either want to read books of hope or books with extremely depressing plots since they make me realize how many people suffer in life, and, on the other hand, that people can survive terrible things against all odds. Both of those ideas are very comforting at the moment, as they make me feel ready for whatever is to come my way.  So if you have any good book titles for me or want to know what I’ve been reading, I’d be happy to share.

Speaking of the future, we still don’t have a date for the MRI to determine whether my treatment is working or not. Jon and I have a trip planned to Salta, Argentina in mid September for the Chilean national holiday, so we are looking forward to that. We asked if we could find out the news till after our trip, and Dr. Majlis agreed, so I guess I will find out sometime after that. So, really, even though I wrote a whole blog, there is no new news on my end. Hope everything is going well with you all!

It’s been about three weeks since we’ve been back from our travels. School has started again which means, aside from some meetings and social engagements, I’ve been home by myself, recovering. The reason for so much time spent recuperating is I’m a lot more fatigued than I was at the beginning of my treatment. Jon wakes up early to go to school and sometimes I barely even hear him leave. I continue sleeping all bundled up in my hooded sweatshirt with Kubi at my feet and Chingy with his head on my chest. It makes it really hard to get up and start my day. I have successfully come down off the steroids from 60 mg at the beginning of my treatment, all the way down to 5 mg currently. And through it all I seem to have avoided the headaches that I had before treatment. Unfortunately I’m not getting all the manic energy and insomnia from the steroids, and am now sleeping about 11 or 12 hours a day. Except for the events that I save my energy for, I am generally moving pretty slowly.
When I first received my new diagnosis, Jon and I were glad that my treatment was short- just ten sessions of radiation. We thought it meant we would find out if the new treatment was working sooner than the treatment the first time. When we were told I couldn’t have an MRI for another three months because the radiation would still be working to fight the lesions, we both groaned. I am not a very patient person in general, but sometimes in life you have no choice but to be patient. Think about an important work project that you work for days on and you have to impress everyone at the office with your presentation in order to keep your job. Imagine that same fear and pressure to succeed, but instead of the feeling lasting for minutes, it actually lasts for three whole months. Except in this case, there is really not much you can do to affect the outcome. It is excruciating! For one thing, I’m not sure if it’s normal to be sleeping so much now. I don’t know if the brief aches in my head are related to radiation or if it means the cancer is still growing. I prefer to have music or TV on in the house or else all I hear is the ringing in my ears, which I hope goes away very soon. No matter how positive or optimistic I convince myself I am, it never gets rid of the fear of the unknown, which is the dark feeling I’ve been trying to push away now for a month and a half. (And I still have a month and a half left to go…)
I do feel a bit more prepared for what could happen this time, rather than during my first diagnosis. Last time I didn’t change my diet, or look things up on the internet, or worry about survival tricks. Some people treated me differently, but I think they got used to me, especially when it became clear that I was going to survive and that I was the same old Eli, albeit, bald. This time, most people definitely treat me differently. I get it, it’s hard not to… What do you say? The re-metastasis in my brain makes my disease seem more dangerous, more real. I am no longer a miracle; just a Stage IV breast cancer patient who beat the odds the first time and was in remission for a glorious two and a half years. What I finally realize is, after much time to think about it, that even if I survive again this time and go into remission, the nature of my disease is that it will come back again, and I will have to go through all of this over and over in the future (or they could find a cure for metastatic cancer- which seems unlikely right now).
Now, I know what I wrote above is upsetting to hear, especially since most people who read this blog know me and care about me, but this is the reality that I face. I would like to believe in miracles like some people have told me to, but I just don’t believe that about life. The truth is that sometimes people get cancer, sometimes people die in a freak natural disaster, sometimes people are maimed for life in war or tragic, traffic accidents. I happen to have been afflicted with the first scenario. These are all things to be sad about, but they are a reality of life.
This blog post also doesn’t mean I’m depressed or that I’ve given up. Just the opposite, really… When I asked my doctor whether or not there were certain foods that were good to eat to help me recover, or if there were certain things I should not eat, in typical Chilean fashion, Dr. Majlis replied, “No. You can eat what you want”. Well, according to all the books and online research I’ve done, that is simply not true, or if it isn’t true, at least eating healthier will make me feel better. So I’ve cut out pretty much all processed foods, bread, pasta, and dairy products. I’ve even tried juicing and kale smoothies. A lot of books recommend becoming a vegetarian, but I eat meat, so that didn’t really seem feasible to me. These dietary changes have been no fun because I am a foodie, and I want my food to taste good, and usually what makes food taste good is fat. But if it helps me to recover and survive longer, than I am all for it. Two days ago, Jon and I took the dogs to my favorite place in Santiago, Parque Bicentenario, and walked all the way around the park and back home. I was proud of myself because I was able to hold on to Chingy (who pulls a lot, especially when he sees or smells cats) and walk around the whole park before I started to fade. At the turn to go home I had to give my dog to Jon and then trudged behind them very, very slowly, all the way home. Although I was pleased I walked so far I was also very cognizant of the fact that I used to do this walk with no trouble, all the time.
Occasionally I do let myself dwell on the fact that none of this is “fair”. I really hate that word. Nothing is ever “fair” in life. But I do get annoyed sometimes when people complain about little things that don’t really matter. But who am I to begrudge people the right to complain when things aren’t going their way? Even though many things have not gone my way, plenty of things have. From working on all my travel books and editing Jon’s breathtaking pictures, I can certainly say that I’ve been able to see many things that people only dream about. I’ve been able to affect kids’ lives all over the world through my profession. I have a loving family, wonderful friends, and my husband has been a great partner throughout this journey. I have enough money to pay for my really expensive health care, and also have enough to travel or buy things when I want. So, in reality, I don’t have a whole lot to complain about, compared to other people. You just ‘gotta keep it all in perspective and do the best job that you can to live up to the ideals that you find important. That is what I intend to do during this next month or so of waiting around to find out if the treatment worked. I hope you will join me in pouring a very large glass of wine when I’m done with all my steroids in two more weeks, and laugh with me like you would normally do. I would really appreciate it!

Remember when your teachers and coaches told you not to take steroids?? Well, I am in complete accordance with that advice, unless you really have to… I say all this, not for sympathy, but transparency for those who have metastatic breast cancer and need to know what to expect. I am currently taking steroids twice a day in order to ease the swelling in my brain from the lesions and the damage from the treatment, but I have been on them for a little over two weeks and already I´ve noticed a significant change in my appearance. I know that this post may seem superficial and that there are more important things to worry about in life, but sometimes I look in the mirror and I wonder what the hell happened to me.
I can still tell it´s me, but all the side effects of steroid use seem to have affected my body pretty instantaneously. I have terrible insomnia. I usually sleep about 5 or 6 hours a night and feel a little guilty when I wake up to maniacally buy plane tickets and consequently wake up my husband sleeping in the bed with me. Usually I read a book or something, but I know I´m keeping him awake. Sometimes I can fall back to sleep, but for a person used to lounging in bed, waking up in the early hours of the morning has been a change. However, on the bright side, I am very productive during those hours and actually kind of enjoy the contemplative, personal time. As I write this blog I have made myself some hot tea and am hoping to watch the beautiful sunrise from the glass windows of our rented beach house with a fabulous view of the Chilean coast. I absolutely love it here and if I knew more about my future, I would buy property along this coastline in a heartbeat.
As for other effects of the steroids and the treatment, my facial skin is also out of control. It has calmed down a little, but it still is very pimply, especially around my nose and mouth. I know all those of you who used to have acne are like ¨So what- I dealt with that every day of my life as a teen¨. Unfortunately, if I used to break out in my formative years I don´t remember it being as bad as my skin has been following the brain radiation. Randi gave me some wonderful facial creams, which seem to be helping, but my skin just isn´t the same. Also, there has been significant fluid retention and weight gain in just three weeks. My body, particularly my stomach, face, and neck, looks like someone has taken a bicycle pump and filled them with air, like you would a tire. This, combined with the volume of the wig, makes my face look very wide indeed.
I also need to talk a little about the hair loss. Hardly any female looks good bald, and I am no exception. About a day after my sister left and Randi arrived my hair started to fall out again. I tried to keep it as long as possible, but once it started coming out by the clump-full when I tried to run a comb through it, I knew it was time to cut it. Randi and Jon did a wonderful job of cutting and shaving my head, but it was a little traumatic. I never wanted to go back to wearing scarves and wigs, but cést la vie. I have some hair, but it´s very short and patchy and it seems like it will all fall out. It´s just hair, I guess, but it definitely makes me feel a lot less attractive. I don´t say this for sympathy, or for you all to tell me that I´m still beautiful no matter what. I appreciate all those sentiments and I also know that beauty is what you have inside, but sometimes the daily fact of looking at the stranger staring back at me is a little disconcerting.
My other symptoms include lots of fatigue, but I have largely been able to move around and do things. But when I get tired I hear a loud ringing in my ears or I get dizzy and I have to lie down. Also, my implant seems to have shrunk and crept up into my shoulder socket, which is also apparently due to the steroids. I definitely need to start those breast massages again! When I told the doctor about my side effects, he and the neurologist, who both met me during my last meeting on Wednesday, were very kind but said there wasn´t much to do about my symptoms. He said that all of the changes were normal and that I needed to gradually reduce the steroids on a weekly basis. He prescribed a new regimen that will gradually ween me off the drugs. If I have headaches then I need to go back to the previous dosage.
Depression is another side effect of all the drugs. With a difficult diagnosis like mine where you have no idea what the future will bring, and you won´t know how the treatment is working for another three months, it is easy to become overwhelmed with grief. In addition there´s literally nothing I can do to change the outcome except hope and pray that my body is strong enough to handle the treatment and drugs. And also, live my life normally; which isn´t even a possibility since my treatment was so strong. Again, I wouldn´t recommend whole brain radiation unless you really have to, unless your doctors are trying their best to prolong your life.
My family and Randi have done a great job keeping me upbeat during the past three weeks. For me, the sadness comes in waves. It has been hard for me to act normally and to pretend that everything is okay, but I´ve been doing my best. Until I messed up my doctor´s appointment time and am told that I arrived two hours late and completely lost it because Dr. Majlis was no longer seeing patients that day. I had even written the time down correctly in my phone and Clinica Alemana had called to confirm the appointment, but I couldn´t remember the time correctly. It had been at least a year since I messed up an appointment like that, so I chalked it up to the cognitive difficulties related to brain radiation. Sometimes the world gets a little fuzzy and I can´t really function like I used to. Luckily, the nurses felt sorry for me and scheduled me in for the next day, even though it meant leaving for the beach much later than I had planned.
Regardless, when I got the appointment time wrong, I lost it because my dad was leaving that day and I know he was nervous about flying home by himself. I hoped he would be able to make it all right. Regardless, my dad had to go to the bathroom and I had a bit of a dizzy spell while waiting for him so I leaned against the wall and started crying. As soon as my dad came out we both started sobbing and he said how unfair it all was and how I didn´t deserve to suffer like this. I burst into tears also and the two of us somehow staggered to the escalator with our arms around each other to compose ourselves and make our exit. I reassured him that no matter what happened I was strong enough to handle it and that is how I feel. Again, I try not to let my mind go there so I can make it through the day, but sometimes the tears are cathartic and allow me some peace of mind. Don´t worry: I´ll start seeing a therapist soon to talk about some of these issues. But for now I´m doing okay.
As I summon up all my powers of positivity and optimism, I´ve realized again that nothing in life is without a silver lining. In addition to the early morning productivity, I have basically quit drinking. I can handle a small glass of wine every so often, but the steroids are doing a number on my liver so I have been enjoying delicious fruit juices and lots of tea instead of fermented grape juice. I am excited to start eating healthier thanks to a book that Jon´s brother and sister gave me called Kicking Cancer in the Kitchen. Thanks Adam and Kristen: it´s been really helpful. I´m also going to start working out with a trainer to try to mitigate the effects of the weight gain. It´s hard to go on a diet while hosting visitors and traveling, so I will probably gain some more weight before I can lose some. For now I´ve been absolutely ravenous and eat many meals and snacks a day: much more than I used to. I also seem to have gained a sweet tooth and have been baking, something I don´t regularly do because I don´t typically like to waste my calories on dessert. I prefer to store them up for some good Chardonnay or Brie cheese, which we enjoyed last night while watching the beautiful sunset from our ocean view in Matanzas, my new favorite place in Chile. I experienced many moments where the pink, purple and orange hues in the sky were so beautiful that I thought I’d explode with happiness. All of your love, prayers, and well wishes have been so helpful. Thank you so much for helping me to remember to laugh and to live life as I once used to. It means so much on this journey.

The last two weeks have been very odd for me. I haven’t really felt like talking to anyone because I am having a good deal of trouble knowing who I am or what I am all about. If you don’t know me that well, I would describe myself as an active, social person. I love to cook, drink wine, host parties, dance, plan trips, etc. When this new diagnosis came up, my whole life was thrown into a whirlwind. I didn’t have time to properly close out the school year, or say goodbye to departing friends, or really do any of the things I had planned to do. In addition, we are not going to the United States this summer: no workshop for school in Napa, no more time in California with college friends, no trip to Olympic National Park and Canada with sissy and Dustin, no more fun times in Chicago with my in laws. All of these things I regret, and it was very difficult deleting them off my calendar.
Luckily my family flew down last weekend to help me through my treatment and they’ve been here by my side throughout it all. It is a great comfort to have them here, keeping me sane, even though I have a bit of cabin fever being cramped up in the house for so long. It feels a little like Groundhog Day, especially now that school’s over and most of our friends have gone home for their vacation. I feel a little left behind, but know that I need to be here and do what I need to do.
I mentioned before that I am receiving ten sessions of brain radiation. It feels so weird to say that because I have always been very particular about the brain. It controls everything- my writing, my thinking and I don’t want that to go. Mercifully the treatment is very short: about 4-5 minutes. I have to get up in the morning and take several oral chemotherapy pills along with steroids and a pill that is supposed to help with the nausea. I was sick for the first day (probably nerves) but so far all I really feel is tired. And also, I have some serious sinus infections and a hacking smokers cough. It prevents me (and probably the rest of my family members) from sleeping through the night. After I wake up, eat breakfast, and shower, we drive to Clinica Alemana, and I begin the long walk from the car park, up through the escalators, across the hospital, and down the stairs to the radiation wing. The worst part is that I can’t wear any makeup on my face and my hair is generally wet because I’m trying to make it last as long as possible, so I definitely don’t look my best. Definitely… Catching a glimpse in the mirror is no fun indeed. Recently I’ve made an effort to put on makeup after the treatment so I’m feeling a little better about my appearance. However, I’m sure these steroids will catch up to me soon and my physical appearance will begin to change. I’m not looking forward to that at all, nor am I to the loss of my hair again, which I’ve spent a good two years growing out and haven’t gotten very far. My hair doesn’t look that great unless I straighten it, so I guess I’m just destined to rock a wig and some short, curly hair again when that grows out. It was no fun telling my hair dresser that I needed to wear my wig again, but they are giving it a good clean and I am going in tomorrow in order to change the style a bit. I almost lost it in tears and so did the hairdresser, but instead we just said “pucha” a lot and hugged.
Back to the treatment: when we arrive in the radiation wing it is all very fast. The same people are there for their appointments and I definitely seem like the youngest by far. They call my name and lead me into the back where I got my original radiation done on the tumor. The technicians are the same, and they have been very helpful in calming my nerves. This time however, they are not radiating the breast: they are radiating the brain. It is a bit shorter and also more nerve racking. I bring my phone with me so I can listen to music, which is a big help. It calms me down. The one time I forgot my phone I almost had a panic attack in the car, but I made it through. Music is such a blessing.
The radiation is very short but this time I am fitted with a mask that they made out of plastic mesh when I was in the hospital. They buckle me into the headboard, so I cannot move my head and then the laser begins. Hearing those snaps of the buckles is very nerve inducing, so I just sit there and try to breath in the good and breath out the bad and focus on calming my trembling body. The thing that I don’t like about it the most is the smell. This fluorescent light comes on and then it smells like something bad is happening to my head; it smells like radiation. The first few times I was almost inconsolable getting the mask made and having my brain radiated. I really didn’t enjoy it, but I’m getting used to it now. I only have two more sessions so I’m looking forward to being done with that.
The only problem with this treatment is that I won’t know if it worked for another three whole months. Apparently the radiation keeps working for a while so if the lesions have been shrunk or I need to get surgery to remove some then we won’t know until September. So… that’s the news for now. So much to think about… and so little to do, except just sit there calmly, finish my treatment, and hope for the best.