February 6th, 2015 started out just like any other day until I received a call that I came to find, would change my life forever. It would lead to a meeting that would lead to the delivery of a diagnosis that no one wants to be on the other end of. I kept it a secret for as long as I could, the last thing I would want was for anyone to feel sorry for me. I wanted to just deal with it and move on with things. I would soon learn that it would not be that simple, this was just the beginning and the treatment process would be a lot longer than I ever anticipated. I guess eventually, that nice scar across my neck might also be a dead giveaway that I had been up to much more – a girl can only wear so many turtlenecks before others would start to take notice.
In December of 2015, testing revealed that I was clear of any melanoma, making me six months free of cancer. I was so happy and relieved that I didn't know what to do with myself. Around that time, CureForward asked me to write an open letter for someone recently diagnosed. It's taken me this long to find the right words, if there is such a thing. I didn't have anyone to talk to about it back when I was in that position, so I don't know what insight I can provide, but maybe there is something useful in here. This is what I would share with someone recently diagnosed:
You never imagined that one day it would be you. How could this be happening? You meet doctor after doctor. It all becomes a blur. You get caught up in the ongoing appointments, but the endless needles and loud banging of the MRI machines remind you exactly of what you have been faced with. The talk of treatment names only make you that much more overwhelmed. You’re trying to make sense of it piece by piece, but you can’t ignore the little voice in the back of your head going “and why didn’t I go to med school? Would be sort of useful right about now.” You don't know if it's your anxiety clouding your ability to process it all, but you feel as if they're speaking to you in a different language. You have never been so afraid, but I am here to tell you that it is going to be okay. Right when you begin to ask yourself “why me,” please consider this – that you now possess something very valuable. You feel as if your life being dangled in front of your eyes and at that moment you realize how precious it is and how far you are willing to go to hang onto it. We go through each day like our time on this Earth will never run out, but the truth is that things happen all of the time that are out of our control. No one is guaranteed more days, weeks, months, or years. People are taken from us without any warning at all. No doctor can truly know how long you have left. When you go to Google your form of cancer (because I know you will, we've all done it) it is so important to keep in mind that no two cases are exactly alike. This is your opportunity to stop getting caught up in the little things and focus on what is important in your life. It doesn't take long for you to realize that the jerk who cut you off in the mall parking lot or the long line at the grocery store are such insignificant things, your energy is better focused elsewhere. Your perspective will change. A small part of you will forever be changed. The upcoming months won’t be easy by any means, but they don’t have to be the worst. You can allow yourself to be consumed with misery or you can take each day and laugh, love, experience more than you did before. Believe me, some days it will be a little more challenging, but you must work harder to remind yourself of these things. Eventually, you will fall into a routine and it somehow all becomes more familiar. The number of sleepless nights will begin to dwindle. You will acquire a new vocabulary and start tossing words like “eosinophil” around more frequently; not having any idea what the heck an eosinophil even was before all of this. There will be times where you feel as if your body is giving up on you and giving in to all of the medications. You will get frustrated, because you must take a step back and allow yourself to rest. You don’t want this disease to take up any more time than it already does, but you will have to work to find a balance. I urge you to explore all of your treatment options. Together, we must have faith in modern medicine, there are huge advances being made every single day. I truly believe that there is a cure in the near future, because this disease has already claimed so many more lives than it ever should have. If there's anything to take away from my letter, let it be this – as easy as it is to spend time getting wrapped up in the fear of not knowing what is to come, it could easily be spent enjoying the life we have in front of us right now.
Over the years, I've come to find a common theme between some of my favorite things. Those things being: my bed, bacon, the Backstreet Boys (back in the day), banana Laffy Taffy, Bloomington, IN. Might as well throw in the occasional beer while we're at it, right? I know what you're thinking here "Wow Sasha, you have such refined taste." You might also notice, that they all start with the letter "B." Well now, I get to add another word to that list - BENIGN! The original biopsies that I had done last month on my shin and scalp came back slightly abnormal according to the pathology reports. Slightly abnormal? What does that even mean? Not melanoma again...please tell me it's not melanoma again. My new dermatologist gave me the option of keeping an eye on both spots or to go ahead and expand the margins like they did during the MOHS procedure. By going deeper and wider, they can be sure that there are no malignant cells later on down the line. For me, that's an easy decision, because why wouldn't I do everything in my power to prevent this disease from advancing any further. I went in to get them both removed when the plastic surgeon who also worked on my neck and scalp in February urged me to think again. He said "At what point do we stop carving into you? The treatment appears to be working and this spot on your leg isn't going to change that." Also, a very valid point. My number of scars at this point is nearing the double digits. He went ahead and just removed the spot on my scalp which is what came back benign. When I saw that the doctor was calling with the results, my heart sank. I was getting to the point where I was just accustomed to hearing that dreaded "malignant." To hear otherwise made my heart soar, it was nice to get that kind of call.
Results came back from the MRIs and they didn't find anything to be concerned about. A huge weight has been lifted, we will take all the good news we can get. After some celebrating it was back to the usual schedule, one filled with lots of appointments.
Last week was
Monday: physical therapy
Tuesday: meet with a new dermatologist for a body check and more biopsies
Wednesday: check-up with surgical oncologist
Thursday: blood work, treatment, meet with medical oncologist, and physical therapy
Friday: DAY OFF
I've been asked "well with skin cancer you just have to cut it out and that's it, right?" If it's caught early enough then that is all they can do. In my case, I've learned that it's not always that simple. Not only do I have to monitor my skin for any changes, we will have to continue doing scans of what's going on internally to make sure that no tumors come back around my organs. My medical oncologist is very confident in the treatment that I'm doing and says that he's going to do what's best for my health for decades to come. Definitely reassuring to hear someone, a professional nonetheless, talk long-term. I keep seeing articles of how these types of immunotherapy are changing the way that patients with both advanced melanoma, like myself, and lung cancer are being treated. That using the body's own immune system to fight the disease might be the cure that they've been looking for. To think that these drugs weren't even available when I was first diagnosed is pretty astonishing. When it was time for me to begin treatment, my only options were to do the Interferon or wait it out. I don't know what my situation would be like given that the Interferon didn't work. I feel very fortunate that all of these advancements are being made right now and that I was able to have access to this stuff when I did. I will continue with the Nivolumab infusions through next June with the hope that it keeps me CANCER-FREE. Next week, I will be going in for more excisions and physical therapy. They also want to inject steroids into my neck to help break up some of the scar tissue there, maybe it will help lessen the "I got caught up in a prison knife fight" look we've got going right now. So that should be fun...NOT, but at this point, what's a couple more needles?
I guess you could say that this week, we've all had a lot on our minds. Well, hopefully NOT LITERALLY. Both my mom and I are going in for back-to-back brain MRIs. As if blondes don't face enough adversity when it comes to how our brains work, lets throw a couple of tumors into the mix. I was in third grade when they found a meningioma the size of a lemon pressing against my mom's brain. Meningiomas are a type of benign tumor and hers was so large that it began causing seizures. I can remember it all so vividly, even to this day. I was at a close friend's house having a playdate when one of my mom's friends came to pick me up and bring me to the hospital. It was one of the scariest times in my entire life. I may have been young, but I knew what was going on. You hear that your mom - the person who you rely on for just about everything and who surprises you with French toast for dinner (your favorite ritual in the entire world) - is going to have her skull sawed open, nervous doesn't even begin to describe it. What would my sister and I have done without her? I was terrified that I was going to lose her then, but within just a few days she was home and right back to taking care of us. After some routine yearly testing, they're afraid that this time it is back, in which case they will have to remove it. Let's hope there are no tumors to be found.
Just days after finding out that three of my tumors had vanished completely, I began experiencing headaches again. Those few moments of relief were nice while they lasted. The doctors have explained that the PET scans allow them to check the organs and the areas were larger tumors could be, but with the amount of blood the is constantly going through the brain, an MRI is necessary to get a look at what's going on. They were planning on waiting until October to check the progress of the SRS procedure to see if the tiny tumor on my occipital lobe went away, but because of the headaches they want to see what's going on as soon as possible. You don't panic much, not until everyone around you starts to. You tell yourself that it's probably stress or sinus-related, grasping onto any explanation that doesn't involve it being cancer. You keep yourself preoccupied and know that you can't live every day in fear, but at the point (still undergoing treatment) it's not over yet. The other times I've felt something was off, it's because it was. Right now, the hope is to become tumor-free for five years, because that's when you're declared "cured." Even after that time passes, it will be something that is stuck with me forever and will have to continue monitoring for the rest of my life.
I went on my Facebook one morning to see that someone had recently posted, "One person dies of melanoma every hour." Well, okay. Not even half of a cup of coffee in and I'm sitting there, faced with this information that I am not ready to process yet. One cup, three cups, 12 cups of coffee in and it wouldn't matter, that's not something I will ever be ready to process. I try to avoid worrying about what's going to happen down the line. Instead, I think about what I can do each day for things to head in the right direction. I can continue enjoying life, remain positive, and know that my body will work with treatment to beat this. After all, it feels like the only thing you really can control in this kind of situation is your mindset.
There are statistics and some more statistics like the one I came across, but what do they accomplish aside from totally scaring the hell out of you? I don't know, but maybe there is more to awareness than that. Since being diagnosed, I have kept my blinders on to a lot of things on the internet. The first thing doctors told me back in February was that Googling "melanoma" is the worst thing that you can do, that so much has changed with treatments that you can't believe everything you read. With the number of cases on the rise, I think that it is so important for everyone to realize that the prevalence of this disease is a lot greater than you might imagine. Regardless of age, race, or gender, skin cancer can affect anyone. Those are the types of things I think we should be focusing on in order to be "aware." We must keep in mind that no two cases are alike. So at the end of the day, why should their outcomes be lumped together like they are?
There is stuff that they warn you about and of course there are things that they cannot foresee happening. They told me I wouldn't lose any hair, but it's happening. Clumps of strands falling out just like that. I don't blame my hair though for wanting to get out of here, I mean with all of the chemicals getting pumped into it left and right, my body is not the best place to be right now. My five year old brother saw wads of hair in my trash can last week and asked what I was doing with a wig in there. In the grand scheme of things, it is just hair. It is just hair. Compared to other people dealing with this disease, I'm very lucky to have hair at all. Whatever's gone will come back and in the meantime, my time under the blow dryer has been cut in half. Could have saved myself a lot of tardies in high school if I were this quick to get ready back then. There's also the neck lymphedema, I don't remember them warning me about that. Some days it gets really swollen. Although it might appear that I'm about three tater tots away from a quadruple chin, I assure you that it's just fluid getting backed up without the nodes there, I swear. The physical therapy appointments should help with that, but hopefully my body will eventually figure it out on its own. One of the strangest things though, is putting an earring into an ear that I cannot feel. The nerves under the skin of my neck, left shoulder and ear are still regenerating. You find yourself bargaining; whatever it wants to take from me in order to end this once and for all, so be it. Just let me have my normal life back. I will lose my hair, I will lose having only one chin, and I will lose sensation, but I will not lose hope that this will soon be over.
I'm so thrilled to share that as of August 20th, I am tumor-free! There is no better feeling than that. I will continue treatment through next year as originally planned with the hope that things continue this way. Thank you so much for your prayers and positivity, because they are very much working.
A little while back, my Elite Daily article was translated and published on Germany's Huffington Post site. Wait a minute...still taking time to let that soak in. I have the upmost respect for the Huff Post as an online news aggregator, so it's truly such an honor to be featured and to have my message shared with readers on the other side of the world. Above all, it makes me SO hopeful that we can stop this nasty disease while it is still on the rise. In recent years, melanoma has become the most common form of cancer in men and women ages 25-29 years old. Specifically, the rate at which females 15-29 years old are being diagnosed with skin cancer is increasing more quickly than it ever has and UV tanning beds are a major contributor of that. Clearly, there is a reason that it is becoming the one of the fastest growing cancers in the U.S. whereas countries like Brazil and Australia ban UV tanning altogether. There are forms of cancers that seem unexplainable as of now -- breast cancer, brain cancer, the list goes on. What causes them? I don't know, I haven't be able to get a definitive answer yet. They say genetic mutation or environmental factors, but most of the time, there really is no way of telling. Just as smoking can cause lung cancer, sun exposure accounts for 90% of skin cancer cases. When it comes to skin cancer, there are so many ways to be preventative, it is time to take action! PLEASE PLEASE PLEASE protect yourself in the sun.
To those of you who know German... http://www.huffingtonpost.de/sasha-farrell/es-ist-den-glanz-nicht-wert-ich-bekam-mit-23-hautkrebs_b_7910030.html
All of my friends were asking how much of my head they had to shave and how long I was out for. Neither of those were part of the deal...THANK GOODNESS! SRS seems like anything but a surgery so the name is quite deceiving. I didn't feel all that different afterwards either. If anything, maybe a tad fatigued, but that's it. Modern medicine is some pretty amazing stuff. Setting up for the whole thing was pretty tedious and we were all ready to get it going when the machine shut down. They said it was out of battery, as long as there were no surprises on my end of things. All I kept thinking was that something showed up in last minute scans and they would have to go back to the drawing board, but thankfully, that wasn't the case. I sat there for about 45 minutes or so while they tried to get it up and running again. Apparently that was the first time this had happened. For some reason, I found that to be a bit unnerving. Is there something telling me that I should not be getting this done? The whole team was taking turns speaking with the manufacturers when I inadvertently sparked a debate between seven physicists on Five Guys vs. In N' Out Burger. The words "toppings" and "secret menus" were being thrown around. Next thing you know, someone was like "What's so special about Thousand Island dressing? So much for their special secret sauce." The whole delay had caused things to go through lunch so everyone was a getting a little hangry at that point. Finally, the machine was ready and it was time to give it another shot. I got back into my mask, was realigned and then the radiation part started. The table I was on moved in conjunction with the machine, rotating in all sorts of directions to zap me from different angles. In under ten minutes, I would be out of there and able to go home. They even let me keep my mask with the hope that I would never need it again. I would have to get another brain MRI done in a couple of months and then another one after that. My teeny tiny tumor would get bigger before it shrank and disappeared altogether. With every new procedure I undergo, I find it more and more astonishing that this was all caused by one little spot on my scalp. Just one little spot composed of even smaller cells that have led me to go through this extensive treatment. Who would have thought?