When I last saw Dr. M he instructed me that there was nothing I could do for the next few months except to live my life normally. To him I say, that is almost impossible to do considering. It is extremely difficult to relax, stay calm, and go on living your life while simultaneously holding one’s breath so tightly you think you will asphyxiate with stress and worry. As you can imagine, in the time that I’ve been diagnosed, I have experienced some of life’s highest and lowest points. Overall, I think both Jon and I have done a good job of coping with the situation and being as hopeful and positive as possible, but occasionally, the juxtaposition of all the bad news with the pretense that we are both doing okay has left me reeling.
As I mentioned in my previous blog, my mom came down for two weeks, as did my dad. They overlapped for a week so we were able to spend some time together which was nice. I really enjoyed the visit with my parents, as they were able to keep me grounded while taking my mind off of what was going on. They did such a good job that right now, everything that happened the past month seems like a dream instead of reality. I’m guessing that not thinking too hard about my situation has helped me to survive. However, I also realized how much strain my disease has put on my parents, as they are constantly worried about me. They tried not to, but the worry showed on their faces and in their mannerisms. My parents are not overly emotional people so it felt odd to hug and kiss them, but the occasion called for it from time to time, so we did. It made me feel a little helpless and guilty, especially having to hold onto them to keep from falling over like an old lady. It is so wonderful having parents who are willing to drop everything and fly nine hours south to Chile in order to be with their daughter, but it is hard knowing that you need them to be here because you have cancer again and it won’t leave you alone.
Luckily, during the three weeks we were also able to do a little sightseeing, which you know I love. National Geographic had this excellent exhibition in town of their 50 most iconic photographs, which was a really interesting visit, even though I was uber dizzy and could barely support myself. My mom also wanted to go to the Open Air Museum where graffiti artists have painted the sides of their apartment with these huge murals in order to beautify their community. We went on Mother’s Day, a Sunday, and they were having a giant market in the middle of the street. The murals only covered about a six-block walk, but due to my dizziness it was difficult for me to maneuver past the other pedestrians on the sidewalk and families shopping for veggies and random trinkets.
The next week we were able to take my dad to this great little hotel in Pichilemu, 8 al Mar, which is right on the ocean. During our stay we relaxed, enjoyed two sunny days and gorgeous sunsets, ate some delicious food, and explored the black sand beaches where surfers come from all over to catch the waves. And the weather wasn’t too cold either, which I was a little concerned about, it being the end of fall and all. On the way to Pichilemu we were also able to have a delicious lunch at Casa Silva, a winery that both Jon and I think cooks some of the best wood fire steaks I’ve had here in Chile. The setting is idyllic: a beautiful two- story country house with a porched-in dining room, overlooking a perfectly manicured polo field. As I sipped my Late Harvest and gobbled up all the fattening food, I thought to myself, life could be worse! It was hard for me to hold my head up in the car for that long but great to get away and be reminded of how beautiful my adopted country is. During our first few years here we constantly traveled to new places to see as much of the landscape as possible, but we haven’t done as much of that in recent years. It has been nice to visit new places and also revisit our favorite haunts with friends and family who come to stay. Sometimes it makes me feel like I’m just avoiding the reality of the situation, but it’s helping me to breath and deal with life.
On Sunday my dad left to go back home, and on Monday I had a PET scan exam, to see if my regular three-week immunotherapy treatment is still preventing the cancer from returning and spreading in the other organs below the brain. Jon had to take off work again to drive me to the appointment, which lasted three hours! In case you don’t know, a PET Scan or CT exam is a type of nuclear imaging that scans your body in order to determine whether molecular activity is present. In layman’s terms, the examt shows whether the cancer cells are spreading or not. Because of my current situation it was important to get the exam to know whether I needed to change my regular treatment for the rest of the body or not. I still have lesions in my brain and won’t know how effective the radiation treatment was for another two months, so that’s why I’m still holding my breath and will be until that MRI result in August.
I forgot how much I don’t like the PET scan. You have to go into this dungeon-like room on the bottom floor of the clinic and then head to these two lazy boy chairs equipped with headphones, blankets and an outdated sound system so that you can “relax” and sit for an hour while the radiation and suero, a water solution that makes it slightly less poisonous, travels through your body. The nurses who administered the drugs were very young looking, which made me think of how incompetent and lust-filled the young doctors and nurses are on Grey’s Anatomy are (a show I have been binge watching since my diagnosis. It’s very addicting!). One of the ladies attempted to find a vein in my arm in order to drip the radiation into my body. It seemed like it was going okay and didn’t hurt too much until the other nurse came to hook me up to the radiation machine, and managed to spray me and the chair with a mixture of my blood and suero. Needless to say I’ve been left with a GIANT purple and black bruise on my forearm, a reminder of the reality of being a cancer patient. During the exam I was able to wear my own clothes but I had to take off everything metallic including my bra and wedding rings, which seem to have swollen on to my fingers due to the steroids. I had a lot of trouble getting them off.
You have to fast for the exam, so by this time I had been up for hours without any food and was absolutely ravenous. Steroids make you hungry all the time. Sometimes I wake up in the middle of the night and absolutely crave the most fattening or sugary foods. I usually don’t eat desserts at all and now I am obsessed with them. This led to a baking spree in which I made these delicious chocolate chip cookies from my new Food and Wine Cookbook, the Best of the Best. They take the best recipes from the best cookbooks of the year, so it is an amazing collection of recipes all in one convenient cookbook. As I raised my arms above my head for the twenty minute exam, the cookies danced in my head and on the roof of the metallic exam tube. Despite my arms going numb from the uncomfortable position I had to hold them in, I practically drooled all over myself. The nurse who gave me the exam was about as cold and unfriendly as any nurse could possibly be. I hadn’t taken off my pants because the other nurse had just told me to just take off the bra. I had forgotten about the metal button and zipper on the pants so hadn’t removed them. The nurse clucked disappointingly at me, lifted my butt up, ripped my pants off me on the examining board and pulled them down to my shoes. I felt like an exposed piece of meat and was horrified at how inhumane it all was. News to nurses like Christina Yang: a little bedside manner and compassion goes a long way… I tried to ask her how often she has to do this exam each day as I can imagine it must very dull and repetitive. She didn’t even respond to my attempt at being friendly.
After about twenty minutes of being inside the whirring machine, they slide you out and hook you up to the contrast solution via the IV in your arm so they can read your nuclear activity. The contraste hurt going in and then my body got all hot and tingly, a strange sensation that anyone who has taken an exam like that will remember vividly. When they put me back in the machine, they made me breath normally and then hold my breath for intervals of time so they could get an accurate read. I tried not to think about the fact that I am 34 years old and I have already had a pet scan four times. By the time I was done, I was more than ready to erase those memories as quickly as possible. Thanks, Nurse Jackie, for not lowering the board so I could touch the floor and making me jump off of it to pull my pants back on… humiliating!
Jon and I went back in on Wednesday to get the results of the PET Scan. The weather was particularly ominous that day. It was so foggy that you couldn’t see anything in front of your face: a perfect day to get bad news. We went up to Dr. M’s office on the 9th floor and the view from the windows was a complete white-out. I was very nervous because several friends of mine with cancer received bad results from exams this week, so I didn’t have a lot of hope. Luckily Dr. M greeted us at the end of the hallway and didn’t mince words. I gripped onto Jon’s hand as I lurched from one side of the hallway to another. I hoped it wasn’t too obvious that I was still very dizzy. Dr. M didn’t wait long before grinning and announcing, “Your PET Scan results came back clear!!!” Jon and I entered the room and breathed a small sigh of relief. We discussed the new treatment of the drugs. They are switching my daily hormone therapy pill to one that is more effective at preventing the spread of cancer in the brain. I will also be taking an oral chemotheraphy pill again for five days a month starting with my regular immunotherapy treatment on Wednesday, so I have some nausea to look forward to.
The main thing I wanted to do at the appointment (besides receive good news about the scan, of course) was set a schedule to decrease my steroid usage so I can start to deflate and look normal again. The steroid I take every day is meant to help ease the pain of the swelling in the brain from the lesions and radiation treatment. Although I am taking a much lower dose of steroids than last time (8 milligrams as opposed to 40) I have definitely suffered the same effects of steroid usage. Two weeks ago my face broke out like an acne-ridden teenager for a few days. I had so many painful pimples on my nose that I looked like Rudolph. It was all I could do to keep Jon’s fingers at bay!
In the span of about three days this week, my cheeks and neck also ballooned to full on steroid puff face. This was disappointing because I had recently lost a lot of weight and was fitting into outfits that I hadn’t worn since my twenties. No such luck now! My jaw is so painful because at night all I do is squeeze it tight and create tension around the muscles. When I get dressed I look incredulously in the mirror and envision a football player or bullfrog with no neck. My head rests on a giant blob of flesh and the cheeks are so wide. It is no longer fun to get ready for the day because I know that no matter what I do, I’m not going to look good. Jon took a picture of me yesterday and I had three chins. Not lying. When I look in the mirror I’m like, who the hell is that?! My friends and husband are so nice to say they don’t notice the swelling, and that I’m still pretty, but I have eyes, people, and I am vain. I can see that I am not looking my best. I know this is not the end of the world, but the visual change in my appearance reminds me that the cancer is real. The puffiness should go down over time as I decrease the steroid usage, but that is going to take a few weeks. I hope I will deflate before my trip home in June so that I don’t look ridiculous for my sister’s bachelorette party pictures, but if I don’t I guess I will deal since I don’t have any choice.
This week also marked the loss of my hair, which started falling out in clumps in the back whenever I showered or touched my head. I was trying to keep my natural hair going as long as possible, but so much fell out at the nape of the neck where I was radiated, that my husband said I could no longer go out like that in public. (And if Jon says something like that… you better believe he means it). From the front, which is what I was looking at, the hair still looks good and full but from the back you can see patches of my scalp and I look like a mangy dog. I did not see this until I looked at it with a mirror. I’ve decided not to shave the whole head, and instead sport a reverse mullet because my hairdresser says that in a few months I might be able to get extensions to cover the back of my head. My goal is to have my natural hair by the time Ali’s wedding roles around in January, but until then I will be wearing my new wig.
I decided to splurge (quality wigs are NOT cheap) because I have been wearing my old wig, Betty, now for three and a half years and I’m tired of her. The hair is falling out so you can see the scalp of the wig. There is not much you can do to style it due to the length, and I don’t want to be strawberry blonde anymore. So, I successfully took a taxi and went to the wig store by myself the other day (YAY! Independence!). While sipping tea I tried on a few. Although it was expensive, it was important to my morale to have a new wig and Jon let me buy it. The new hair looks a lot like the other wig but it is a darker, chocolate color with highlights. I love the color! Plus the wig fits better on my head, the bangs are very natural, and I can pull pieces back from my face to take away from the mushroom hair that was making my steroid cheeks seem even wider somehow. I am currently taking suggestions for names for the new wig… I’m thinking Mable, as that was my bowling name in China, but I’m definitely open to suggestions. Feel free to leave them in the comments at the bottom…
On the bright side, I also had some very fun and important events this week that made me feel like myself again amidst all the stress of the PET scan. On Wednesday night, after I received the good news about the clean scan we celebrated Renea’s birthday at a well-known restaurant in town: Astrid y Gaston. The food was delicious this time and they were making up for a previously poor experience so all our dishes and drinks were comped. We had a lovely, joyful time. The next night I got my nails done at the mall which I haven’t done since I was diagnosed, and was able to walk the thirty minutes from the mall to my friend’s apartment for the final book club of the year. It felt important to be able to do these tasks even though I had trouble staying upright when us pedestrians had to stop for cars at one of the crossroads.
I also seem to have discovered a renewed interest in food and cooking. I now plan on trying a new recipe a week to expand my repertoire and cook more modern style food. I have also been inspired by Top Chef, which is another show I’ve been been binge watching on Hulu Plus. It makes me happy. We have made some delicious meals at home recently and I know that will continue. I plan to post the successful recipes on the blog so you guys can give them a try at home too.
In addition to modernizing and branding this blog-site thanks to the free tips from the Blogging U course I took online, I also have been inspired to start a new blog about Santiago: things to do, places to eat, shop, etc. I am envisioning reviews as well as many top five lists. We are currently coming up with the format and title for that blog, but be on the lookout. Again, taking suggestions for names. I want the word “Gringa” in the title. If you have suggestions, leave them in the comment section below please. The restaurant section is going to be called Santiago Bites and will have a rating system based on bites according to how much we enjoyed our meal.
Anyway, there is a lot to look forward to in this next chapter of my life, although I do so with trepidation. I can really only think forward to about September break because I have no idea what the MRI will say, but September seems like a long time a way to me now. I’ve had to change my perception of having plans and goals and just living each day as it comes. The end of the year social calendar with despedidas (farewell parties) and other events is getting quite full and soon we’ll be back in the states to visit Jon’s family and then I am going to LA to see my friends at the beach, and Portland to help throw my sister’s bachelorette party over the 4th of July weekend. It’s going to be busy, but fun. I can’t wait!
The last thing I wanted to do in this post is give a big thank you to the members of Team Eli and all those who read this blog. I hope everyone will breath a small sigh of relief with me that I’m not going to get worse or require any more treatment in the next two months until we see how effective this recent radiation treatment was. I am supposed to get less dizzy and nauseous as the tumor shrinks, so if I remain dizzy, I guess that will be a bad sign. But I am hopeful. Dr. M explained that he was telling me at noon that this was the current treatment plan he could offer, but that the research was changing so much that the treatment could change by that afternoon. Already new and less harmful therapies have emerged for other breast cancer types. The doctors are looking for a new treatment that will prevent HER+ cancer cells from moving up to the brain. So cross your fingers and hope that those brilliant scientists at Johns Hopkins come up with a better way to treat metastatic breast cancer so that I can live a longer, healthier life. Even though I try not to think about it, I realize that the rest of my living will always be associated with cancer. This is a sad and devastating truth because my husband and I did not envision this life for ourselves. However, I have also realized I don’t have to let cancer rule me. I don’t have to take the step to fully revert into cancer land but I do know that my future is uncertain, so I will continue to hold my breath uneasily at times. My greatest hope is that I can make the time I am given as meaningful as possible. I hope you all will be able to do the same. Much love!