My Lifeline

Seeing as I went into great detail about surpassing the prognosis my first doctor gave me last week, I thought it would only be appropriate to highlight my treatment and what has kept me thriving. Personally, I have made some lifestyle changes but will save that for another time/post. Today I want to speak about the treatment I have, and currently am receiving. Early on I was constantly googling info on what to expect and want to put this out there for others in a similar position. I am by no means an expert on these treatments and can only bring light to my personal experience. Please don't forget we all can interact with these treatments differently.

Let me start with my first treatment of radiation. By the time my lung cancer was discovered it had spread to my brain. You can read further about this here. The larger of the two tumors were directly on my brain stem creating life-altering symptoms. These consisted of facial/body numbness, vertigo, lightheadedness, struggle walking straight, inability to drive, difficulty writing, and severe headaches. The severity was so extreme that my doctors knew that radiation needed to happen immediately. I was warned that there were no guarantees I would regain all functions, which was a frightening thought, but I cared more that things did not progress. At this time, I was beginning to notice it affecting my speaking/mental processing and didn't want that to become a bigger issue. So shortly after being diagnosed, I started treatment one of fourteen. I still remember showing up to the appointment unsure of what to fully expect. Would it be painful, would it be as quick as they said (15 min) and would I feel different afterward? As I laid on the moving table the technicians locked a mask into place that had previously been molded to fit my face. This kept me from moving, allowing the radiation to be administered to the same spot each time. As I was positioned into place using lasers to target the proper location, my technicians quickly left the room leaving me to be zapped with radiation alone. It's quite the experience to be in that room alone with a large machine rotating around you. You are completely aware that radiation is going into your body yet you feel nothing. Just as I had been told, my first treatment was over before I knew it. I left feeling exactly as I had when I arrived.


This routine continued daily. I slowly began to notice a deeper onset of fatigue come over me. This was accompanied by hair loss, which I was warned may occur. Since I was receiving spot-specific radiation and not full brain my hair loss followed suit coming out in specific spots throughout my scalp. The worst of it though was nausea. I constantly felt like I needed to throw up, food was hard to consume and many things only made the nausea worse. Coffee tasted like lead, opening the fridge was like being hit with the smell of a teenager after gym class, and the Febreze scent on our trash bags was unbearable. Then one morning I woke up to find myself sprawled out on the bathroom floor. Without giving too much detail, I had hit a low point, it was coming out of both ends. I somehow made it to the hospital for my treatment, but ultimately was too sick to even lay down for my 15-minute treatment. Thankfully they had sent me home with a bucket because I didn't even make the 5-minute drive home before the vomiting began again. Even to this day that was my lowest of lows. I have never felt something course through my whole body like that before. Thankfully I managed to get through my remaining treatments and slowly began to notice improvements in my original symptoms. It took time to regain strength and to feel like myself again. If I am being honest, I still am working no that, but I am far from that 29 year old girl who had withered away to almost nothing in the course of a month.


Once getting through radiation, it came time to start my therapy, which my doctor had concluded would be Alectinib. Alectinib, or Alecensa, is known best as a kinase inhibitor therapy that is much different from your traditional chemotherapy treatments. To quickly sum it up, Alectinib prevents my gene mutation (ALK) from forming in my body. It is taken orally and for me twice daily. In time my body will adapt to the medication and stop responding to this therapy, which is when a new treatment plan will need to be put into place. Until then I will continue taking Alectinib daily and receive 3-month scans to monitor progression. Prior to starting this treatment my husband and I made the quick decision to freeze my eggs. Again, that is a post for a later date, but let me just say if I had anything left after radiation that pulled it out of me. Yet, God always makes sure we are sufficient enough to handle what he throws our way. So after a grueling few weeks, I was all cleared to begin the miracle drug Alectinib. Now I know other patients who would say the exact opposite of Alectinib, but again this is why it's important to remember each of us have different experiences. That's not to say Alectinib hasn't caused me some pain. With intense medication like this, there always comes side effects. For me, this has consisted of severe constipation, sun sensitivity, muscle pain, fatigue, swelling of the feet, and trouble sleeping. Now that I have been on Alectinib for 2 years, I can say these side effects come in waves and some have improved greatly since day one. However, there will be a day where I begin to feel like my old self again to only be hit by a wave. It reminds me of my husband's first time on a beach with actual waves. For our honeymoon, we booked an unforgettable trip to Costa Rica. Before this trip, he had only experienced the waves of The Bahamas, which if you've never been they are more like that of someone doing a cannonball into a pool than anything else. So suddenly when he was in an ocean with waves that knocked his feet out from under him he wasn't sure what to do. He would try to overcome those waves attempting to go over the top of them to only get pulled under. After many laughs on my end, I eventually let him in on the secret. When that wave comes hold your breath and go under it. Allow the wave to pass over you before you come up for air. With time he got the hang of it but laid breathless on the platform by the end of his battle. Similar to my advice to my husband, my advice to you is to not fight the waves. At the beginning of my journey, I attempted just that. I got angry fighting with my circumstances and just wanted my old self back. Over time I realized I had to say goodbye to what once was and embrace this new life. I now take a deep breath when I see the wave coming and go under. I do what I can to make these side effects more bearable, but have accepted that they are apart of this new life. There is no use in battling them. I am better off doing what I can, but in the end allowing them to run their course.


My treatment is one I have learned to be grateful for. It lets me live a fairly normal life and adds days to a life that could have been cut much shorter. Let me just say though, that does not take away the pain. I've had to learn to accept what is, but there are still days when that acceptance is much harder than others. Give yourself grace! If you find yourself in a similar position as myself reach out to those who have walked this journey. We all are eager to share our stories in hope that it will have not all been for nothing! You may feel alone, but I promise you are not!







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