I met with a whole new set of doctors who will perform my SRS procedure or Stereotactic Radiosurgery. This is not to be mistaken with SRS, Sex Reassignment Surgery, we will leave that one to Caitlyn Jenner. I came home from the hospital and Googled "SRS" to see what the mask they would be making for me would look like when I quickly learned that the two procedures share the same acronym. I would go in a week beforehand for a prep day. My radiation oncologist told me to think of it as just a day at the spa. When you think of a spa day, pedicures and mimosas come to mind. Well, this one was definitely lacking in both. Bummer right? They start by laying these wet, warm strips across your face. Basically, I got my big balloon head paper mached, tell me kids in their arts and crafts classes wouldn't be totally jealous to hear that. The mask itself is pretty cool, as cool as brain cancer gets. They made it to fit every inch of my head perfectly. With it on, the resemblance between Jason from Friday the 13th movies and I is uncanny. It's similar to the picture here that I have found online, except for that mine has also has a piece for the back of my head. I'm lucky that I'm not the least bit claustrophobic, because that otherwise might be an actual nightmare. Once the mask hardened, they clipped it down to a few different machines and did a series of CT scans along with more MRIs. After I would complete the tests, my new team would compile the results to formulate a plan for my procedure. A physicist, neurosurgeon, and my radiation oncologist would work to come up with a way for the high-dose beams of radiation to converge on my tiny tumor, so you can imagine how precise they have to be. Over time, the hope is that it would shrink. They say the procedure itself is a breeze and I believe it. It sounds like it will take more time to get set up and aligned than it will for them to do the zapping. Can't wait for it to all come together tomorrow. See ya teeny tiny tumor!
I have received an overwhelming number of responses on the Elite Daily article. Part of me thinks back to about every English class I ever took and how miserably I always did, so you can imagine my surprise to hear that this thing actually made the cut. Writing those damn haikus always got me. The other part of me is afraid that my message was poorly communicated or lost in the editing process, putting yourself out there on the worldwide web can really make you second guess ummm...EVERYTHING. It's sort of like walking into your first day of high school, but only 10,000 times more terrifying. Lucky for me, I switched high schools in the middle of my sophomore year, so I experienced that feeling twice. What's one little article? Well, there are the kind people, the ones that remind you how much good there really is in this world despite all of the crappy other stuff. Those are the people that want to be your friend, they share stories and support, they're like the ones who invited you to sit at their lunch table. They're amazing. Then there are the internet trollers, a term my mom shared with me and I am just now finding out about. I guess you can think of them as like the bullies or whatever. They question your intentions and maybe wonder why you would be crazy enough to share your story with the whole world. They take what was meant to be a joke and turn it into an opportunity to criticize you (specifically your eating habits). In the end, we must give them the benefit of the doubt. Maybe, it's just that they just missed out on Bambi as a kid and its most valuable lesson, "If you can't say something nice, don't say nothing at all." Who knows. One comment that has stuck with me was to "get better genes." Hahahaha okay, buddy. Let me see what I can do.
The point I'm trying to make here is that if there's anything to take away from the Elite Daily article, just take care of yourself and nix those poor habits. I clearly have had some bad habits myself, especially as a teenager when I didn't know any better and had the mentality that I could do whatever I wanted. I didn't consider the repercussions of those actions and I certainly didn't think I would be facing them at this point. I just wouldn't want others to continue making those same mistakes and wind up in a similar position. It just so happens that this type of cancer is becoming more and more prevalent amongst young people. Many people, including myself pre-diagnosis, thought that with skin cancer you just cut it out and that's that. I quickly learned that things don't work that way. I figured that if anyone saw all of the types of treatment that go into something like this, that baking in the sun and UV beds might not seem so hot. Of course, no one is really quite sure what causes cancer, but they know that there are things that increase chances of getting it. Somewhere deep in my family history it is possible that there was a genetic mutation that caused this that we just didn't know about, but making myself the world's first 5'9 lobster every time I went into the sun certainly didn't help things. My plea is to stop partaking in anything that could compromise your well-being. It's also about listening to what your body has to tell you. If something doesn't seem right then act on it right away, even if it means looking like a total hypochondriac. Please don't interpret that as a go-ahead to hop on WebMD every time you get a headache either, but consult a doctor with anything that might seem out of the ordinary. Words cannot express my gratitude for the positive and encouraging responses that I have received following that publication, I am overly flattered and so appreciative. However, I am anything besides brave or inspiring. I do what the doctors advise me to do and that is all. Inject me with poison every other week? Okay, go ahead. Slice my neck open? Sure, cut away. Shoot laser beams at my brain? Please, have at it. Let it be known though, that in no way am I any different than the millions of other people enduring the exact same thing. Anyone in my position would take the same measures as I have in order to get through it. Many have lost their lives, but it's not like they didn't try to get better. I wouldn't want their fight to be diminished in any way, shape, or form. People face struggles every single day. For me, this is just a small hiccup that has opened my eyes to a lot of things. I am fortunate to live the happiest, most fulfilling life and would be wrong to give the impression that it is anything less than that. We came to find that the part of my leg that they removed contained cancer cells after all. They're not sure if it was cancer all along and they just didn't have a large enough sample with the first scrap to be able to see that. It's also possible that it spread there sometime before starting the new treatment or even during, but there's no way of knowing. At least they're pretty confident that they got it all out if this spot so we have to find comfort in that.
I've somehow managed to land myself in the ER twice within six days. Until now, I have only been taken to an ER one other time in my life. I was about four when I slammed one of my chunky little fingers in the sliding closet door of my room. I hurried to my room to grab shoes so that I could ride my tricycle around the driveway and that's when it happened. Almost 20 years later went by without another trip. I find myself to be making a habit of it these days. My oncologist told me time and time again that if I felt the slightest bit faint or had difficulty breathing, that I should go to an ER right away. I was in a crowd when my vision completely disappeared, which is what brought me there the first time. I could walk and talk but totally lost my sight for about two minutes, but it was probably the most nerve-racking two minutes of my life. You want nothing more than to believe that it's nothing, but we had to go anyways to be certain. After an EKG and some fluids, they said that it must have been just a combination of the summer heat, dehydration and low blood pressure that caused me to have that episode. It was the day after my fourth infusion of this new medicine that I started feeling pretty off. I woke up extremely short of breath and couldn't keep up with my usual routine. I was walking on the treadmill at the gym when it felt like my chest was going to explode. I think back to before all of this started happening when I would go straight to the gym after work to fit an hour of cardio in before bed. I would run and do that stupid stair master, a machine I will never quite understand but continued to do religiously. These days I'm struggling to drag my feet for a 30 minute stroll in without having to stop every other second to take a rest. I went about my day, but breathing didn't seem to be getting any easier. My mom urged me to email my doctor just to make sure that this was another side effect. I didn't realize that he was still out of town until one of his assistants called me within minutes of sending the email. She instructed me to head to the hospital right away. One minute, I was figuring out how I was going to spend my Friday night out with friends and the next I was describing my pain levels on a scale of 1 to 10. Those carefree days seemed so far behind, IVs and those heinous backless gowns would become the norm. They did an EKG within moments of checking in. Another one of my oncologist's assistants came in to see what was going on. I hadn't seen her since I started my new treatment so she wanted to check out my tumors. Her eyes filled with tears when she felt that nothing was there. Over the next few hours, they took blood, a CT scan and chest x-rays before releasing me. They had to be sure that the shortness of breath wasn't caused by a blood clot in my chest or inflammation of the lungs, cause apparently that kind of stuff has happened with this medicine. Again, they told me it was probably just side effects. My oncologist arranged for us to meet with him as soon as he returned from his trip. He had heard that I was sent to the ER and wanted to learn more about the things I was experiencing. Since my thyroid levels had been way off since progressing with the treatment, he thought that maybe other things in a similar sort were acting up too. To him, it sounded like maybe my pituitary gland was enlarged, causing what they had been calling side effects. They scheduled me for a brain MRI right away on what would have been my grandmother's birthday. Another Friday night spent at Glenbrook Hospital, that would now be two in a row. Spending time with my friends and feeling 23 was what I missed in times like these. I was lucky to be able to have so many co-workers at my old job who were my age, we had all became friends pretty quickly. Lunch breaks with them and company happy hours would become a thing of the past, the hospital staff was who I got to see most of now. The majority of my MRI was spent begging my grandmother to work some magic from Heaven. With it being her birthday and all, I thought I would have a little more luck on my side. I would go home and spend the weekend trying to keep the MRI off of my mind until I received a call from my oncologist Sunday afternoon. He explained that I had experienced the blackout with my vision, because there was a mass of malignant cells on my occipital lobe. Not my brain now too. I would have to meet with neuro and radiation oncologists now to discuss what type of procedure I could have done to remove it. With my original melanoma located on my head, I had been concerned about it attacking the brain all along, but they had always assured me that it wouldn't go anywhere near my brain. In previous tests, I was at least clear there, which I had found to be a huge relief. This time was different and I panicked a little more than the other times. I thought that after I got over the initial shock of the diagnosis it would only get easier from there. Then, I found out that it had come back and I was more afraid than I was after the first diagnosis. I sit here now, with the cancer already have metastasized to several places and don't know what to think. My doctor tells me not to worry, that we will stick to the treatment plan. We keep saying "well, it can only go up from here," but are still waiting for it to work out that way. It took a couple weeks to get in with a dermatologic surgeon, but I finally got to see what this Mohs surgery was about. After having an unusual spot on my left thigh scraped not once, but twice, my dermatologist referred me to another doctor who would create a larger excision. She had found that there were some abnormal qualities to the skin after conducting a biopsy so they wanted to be certain it wasn't pre-melanoma. The procedure was pretty simple, they wouldn't have to put me out, but I wish they had considering I will never be able to unsee what I saw. YUCK. They started by drawing a 1.5 inch almond-shaped outline around the area they would need to test. Next thing ya know, they've got all these syringes out filled with lidocaine to numb the whole area. They poked me with those several dozen times to make sure I wouldn't feel the scalpel and off they went, cutting away. I made the mistake of glancing toward my leg where I saw myself cut open, fatty tissue and everything. It was one thing to be knocked out for a procedure and wake up totally oblivious to the slicing and dicing that just happened in the operating room, but it was another to watch it. Not exactly how I pictured myself in what could have been a scene out of Grey's Anatomy. I was not working alongside McDreamy nor was I saving lives in the ER, but instead the gross mess on the other end of the knife. All they had to do now was stitch me up and send me home. Another scar to add to the collection. Gosh, skin cancer's a blast.
I started my Monday off with a visit to the Kellogg Cancer Center with about 8,000 people who apparently had the same agenda. The place was packed. You would have thought Oprah was there giving cars away if you saw how people were lining up to get in. YOU get a cure and YOU get a cure! I noticed that all of the others had wrinkles and soft white hair, so I guess my light blonde was as close as I could come to fitting in. The crowd is on the more mature side, if you didn't already catch my drift. The nursing staff have to put up with a lot of complaining from people in the waiting room, luckily we can joke about their absurdity. So many of these people get extremely irritated when there are long wait times. I just want to shake them, like "HELLO, these people are working to save your life so show a little respect." Patience wouldn't hurt them either. They also like to glare at you if you come to the waiting room after them and get taken earlier. I mean please, we are all here for the same reason - to not be sick, so relax why don't you?
They took me back to a room where I waited to see my surgical oncologist. He was astounded by what he found and what he found, was that MY TUMORS WERE GONE! After only two infusions, this "miracle drug" seems to be pretty damn miraculous. The tumor had grown so big so quickly that it even became uncomfortable to lay on. It only a matter of time before I would have to name the thing and it was almost completely gone. We wouldn't know if I was totally cancer-free until PET scans and MRIs were done, but at least there had been progress. They told me I would most likely continue these infusions for another year unless I begin to develop symptoms characteristic of an auto-immune disease. Things are looking up. I've been feeling (and looking) extremely bloated again lately. My mom says it's the chemo so recently discovering that S'mores Oreos are actually a thing has nothing to do with it LOL. Oh, and eating like I'm going to the electric chair isn't the problem either. As time goes on, I've been feeling more and more like my normal self so I celebrate with a glass of wine or a cookie here and there. Sue me.
You would think that by cutting those nasty cancer cells out of the skin and remove the lymph nodes it attacked (plus 65 others it potentially could have) then that would be it, right? WRONG. Those cancer cells might be tiny, but they move quickly. Sneaky little pricks. My doctors explained to us that based on how fast mine had spread, the chance of a recurrence would be greater than 50% so as an added insurance policy, I would have to go through treatment. At this point, I wasn't eligible for these "miracle" drugs that recently became available. My options were A. Interferon B. Radiation or C. Both. Interferon is a drug that is typically administered to Hepatitis C patients, but they have found some success with melanoma over the years. The treatment consists of 20 IV infusions and 11 months of self-injections, not to mention the long list of side effects that go along with it. Much of the side effects are similar to having the flu (i.e. headache, weakness, fatigue, nausea, chills, etc.) There's also the risk of becoming severely depressed, because this cancer sh*t isn't mentally exhausting enough. I was given the option to begin radiation as well. This would decrease the chance of cancer coming back to my scalp, but increase the chances of it showing up somewhere else in my body. Given that the radiation would cover a large portion of my scalp and neck, it would cause a number of long-term issues with my throat, glands, and teeth. As you can imagine, I was not totally thrilled with my options, but was willing to do anything for this to be gone so I can go on and live a long life. After getting a second, third, and fourth opinion, it was decided that I would proceed with interferon as chemotherapy and hold off on radiation.
I was beyond ready to get going on the daily treatments. I figured the sooner I got them over with, the sooner I could get back to my normal life and this nightmare would come to an end. Hospital employees started noticing that I was showing up everyday, so I got to know the nurses, receptionists, and complimentary valet parkers pretty well. They even had a nickname for me. After my treatments on Fridays, I couldn't seem to hurry out of there fast enough. I would hear them say "Sasha Fierce is OUT OF THE BUILDING" as I was hauling it to my mom's car. My mom took me to just about every infusion. She would buy lots of green juice for me to stay hydrated and hold my hand when after six attempts they still had trouble getting a good vein. I don't know what I would have done without her. Both my mom and stepdad would go out of their way to get my favorite foods, trying so hard to get me to eat. At the beginning of my treatment, the doctors had prescribed me a cocktail of medications to counteract some of the side effects to make me more comfortable, but those meds had side effects of their own. I had something to take for nausea during the day, something to take for nausea at night. They gave me a high dose pain reliever only to be taken if Tylenol wasn't working and I wasn't planning on driving. They also gave me a low dose sleep aid to ease anxiety. I still feel like I'm forgetting some, but you get the point. The Interferon took a major toll on my immune system as it was working to train my body to prevent the cancer cells from returning. My white blood cell count plummeted, so my body wouldn't have even been able to fight off a common cold. With a compromised immune system, spaces with large amounts of people were now off-limits. I had to stay away from the gym, which I couldn't say I was too upset about, but places like baseball games and public transit as well. Raw veggies, lunch meat, and sushi were also not allowed given the risks of foodborne illness. I spent the majority of April sleeping, often on my boyfriend's shoulder. I made it through all of my treatments without taking a break, which apparently doesn't happen, like ever. Getting through it was the most rewarding feeling, perhaps more rewarding than anything I had ever done. I mostly just felt relieved and so badly wanted to believe that it would be smooth sailing from here on out. I had a second procedure and another MRI before they finally released me late Thursday night. I chowed down on some Thai food after not being allowed to eat all day at the hospital. Sleeping in my own bed never felt so good. I woke up the next morning anxious to be able shower again. With a bum arm and the help of my mom, we washed my hair. We took turns shampooing and holding my neck drain. Again, I was so reliant on her for something so simple. We got most of the iodine out, but the knots were a whole other story. Some of those had to get cut out, but in the end, it's just hair and would grow back.
We were having coffee when my mom received a call from the rehabilitation center that my grandfather had been at. They said he had a heart attack and would be sent to the hospital. I didn't understand. I had just spoke to him Wednesday and he sounded like the Gramps that I knew before the dementia set in. He had called my mom while I was in the hospital and asked if he could speak to the patient, that patient being me. I assured him I was doing well and that's all he needed to hear. He had been in and out of the hospital for a few months. Between my grandfather and I, it seemed all my mother did was go from hospital to hospital. I don't know how she did it. That Sunday, my grandfather passed away. My mom thinks he took one for the team and went to Heaven for me. My grandpa had always done a lot to help out with my sister and I. The time I spent with my grandparents have been some of my most favorite times. I'm still having trouble accepting that they're both gone. My mom assures me that I have not one guardian angel now, but two.
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