It’s all such a fog. The days, the nights, the appointments. The phone calls, the texts, the messages. I thought that I would be able to chronicle this time. I want to be able to remember this time, but do I? Do I really? Who really wants to remember their worst nightmare? I am a writer. I am a teacher. I want this experience to help educate another person who fearfully faces what I am enduring or educate a friend who wants to support their loved one through cancer. But, now I remember-you cant be in “that” place when you’re just busy surviving. You can’t be an educator when you’re the student. You must learn in order to teach. And this is quite the horrendous learning curve. I am writing, here and there. Sometimes an update on Facebook or Instagram is more so that I can recall my state of mind later when I write the book that this cancer will be. I write in my journal, sometimes just the notes from an appointment, but one that will jog my memory when it has failed. But the thoughts are not super lucid. Mostly, I watch the walls a lot. Fascinating, right? My bedroom window has a good view of the neighbor’s oak tree, I can hear the birds and smell the fresh air, so that provides hours of entertainment. Seriously. I am on the nastiest chemo I can imagine. Perhaps there are nastier, but I don’t believe it. Cisplatin has torn my insides apart, my skin crawls, it’s broken out, my hair follicles hurt. My brain is so tired, but will not shut down for fear of what the morning will feel like. The radiation is not as bad yet. Although it will be the most painful part of the treatment in the end as it burns the inside of my throat day after day. It’s killing all the bad (and good) cells to make way for healthy ones to regenerate. It’s been likened to laying in the sun day after day, even after you’re already sunburned. Sounds like my teenage days but with less “sun-in” and less fun! I had rides to every appointment and even took a trip to Whole Foods that I hardly remember (and hope that I was acting appropriately). I felt hopeful and capable of enduring this 5-week treatment plan. Then, day 6 set. The elusive “day 5” that I heard of, except for me it was day 6. I am not sure what happened but it was all bad. I could not get my self out of bed for anything. And I felt hopeless like death was upon me. Of course, this was the same day that my steroids should be weaned and I forgot to take the anti-anxiety meds that I have never had a need for before which essentially meant a recipe for disaster. The first few days of treatment felt ok, but as I have learned two surgeries and one chemo later, you often feel ok those first few days. The hospital drugs are way better than what they send you home with, so as those wear off and the real deal sets in, you are in for a rude awakening! Since then, reality has set. I spend most of the day in my bedroom, minus a shower which is a daily necessity and requires a nap afterwards. I eat 3 meals a day, drink as much fluid as possible, its a necessity to my healing. When the boys get home, they go straight to the shower and change their clothes as not to bring outside germs in the house. There are no shoes on inside, no friends over, no visits for the boys or for me. There are no “visiting hours”, there are no visitors, this is a “germ minimal” environment as much as one can control with two young boys. Our home must only be the necessary people, or those dropping off meals on the front porch, my health depends on it. If I am healthy, I only need two rounds of chemo during my 6 weeks of daily radiation. But, if I get sick or off track and delayed in my treatment, I am scheduled for the 3rd round of chemo. The protocol for this cancer is concurrent chemo and radiation, as they work in a partnership so as I have one, I must have the other and that is unacceptable to me. I refuse to have that 3rd round. I won’t do it. Therefore, I will remain healthy. One thing that hasn’t faltered is my hunger. Thank goodness. My only job right now is to remain hydrated and maintain weight so thankfully each time I eat, my thirst increases. And if you know me personally, hunger has never been my problem. I love food so much. That’s the shit part of having a head and neck cancer. The feeding tube. If I cannot maintain weight, if I become so swollen and in pain that I cannot swallow fluids, I will need a PEG- tube. In the grand scheme of this disease it really is the least of worries and is a lifesaving tool so its importance is valued, but with it runs the risk of infection, atrophy of my tongue which would lead to speech therapy and prolonged recovery. It’s nothing to joke about. But, should I get to that point, I will gratefully accept the availability to nourish my body with the life-saving nutrients via the tube that will support healing. The good news is that my insurance will cover Liquid Hope which is organic, whole food, much like I prefer to eat in real life. But for a girl who loves to eat, this might be the largest obstacle to accept. I am sure there is more to note here, but my brain is tired and quite honestly I am impressed to have written this much at this awful early hour of the morning and now my babies are awake...and loud. They know mom has cancer. The baby knows mom has an “owie”. They love the extra TV time, the snuggles in bed, the “picnic” dinners in bed with mom. Thank goodness for innocence. There is no fear associated with this illness for them, so while they’re around, the fear is on hold for me too. But, it isn’t fair. None of this is fair. But since life didn’t promise me fair, there’s no time to feel sorry for myself. I have cancer's ass to kick. If I feel this beat up, I can only imagine how beat up those cancer cells are feeling! ***Oh and side note, I am regularly taking all the meds now. Thank goodness I live in California and there are so many options here. I am feeling more capable of facing the bad days when they come now. And, keep the messages coming. I love to hear from you, even when I forget to respond.
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There are so many events and experiences that make up your being. Some good, some bad. Some are result of your upbringing and out of your control, others are exact results of decisions you make in life. But each regardless of their origination build you, your character, your resilience, your compassion and empathy or lack thereof. I have survived experiences in life that I wouldn’t wish on ANYBODY. But each experience and decision have made me who I am. All of me. I have had to rise from the ashes before and I will do so again. I AM ALREADY DOING IT. When Ruthie Lou died, I had a choice; have her death ruin my life or be the opportunity to build the life I always wanted. I chose the latter. I chose life and love. I chose to honor her, to be the mother I have always wanted. And I have done those things. I am proud of me. Living with cancer is reminding me who I am at the core of my being. What I am capable of, who I want to be, the life I want to live, the love in which I want to be surrounded. And, life is (still) good. And I am a fighter. A warrior, in fact. I got this. I know who I am. To raise your vibration, follow my Spotify playlist created by my tribe or send me your favorite warrior song in the comments!
To follow my medical progress and the needs of my family: https://www.giveinkind.com/inkinds/324/lands-family-love The days are such a blur. It’s crazy to think of what my body has just endured, not only in the last two months since the cancer was discovered, but in all the months leading to its diagnosis when cancer was growing in my body, but I was not yet aware. Yesterday a friend sent a link to some interviews that I did in January and it confirmed what I thought to be true, cancer had been in my body for quite some time. I could see my lymph node protruding from my neck as I moved my head in the video. I can’t tell you exactly when this cancer arrived, but I can tell you when I noticed something was “off”. A year ago I had just published my first book and was excitedly working on the next. As publication neared, I noticed my energy waning. Now for the average energetic person that may seem to make sense. I had two small boys, a full-time teaching job, balancing my passion of advocacy, as well as maintaining my relationship with my husband, family, and friends. It makes sense that I would feel tired. But, that didn’t make sense for me. I don't get tired. EVER. So, I did what I don’t often do-I listened to my body and rested. I made a promise to myself and to my husband that as soon as the book published in November, I would take a break from my other projects. I would be satisfied to go to work and come home, that that would be enough for my soul. And it was. Enough. But, I was still SO TIRED. I ate healthy meals. I went to bed early with the boys. I didn’t do extra stuff. I am a school teacher. My immune system is amazing. I rarely get sick. But this year I did- a few times. Which is why when my lymph node swelled, I noticed but didn’t take notice. That’s what lymph nodes do, they swell when they’re doing their job. I had had a sore throat for some time, but along with that swollen node, I assumed I was successfully fighting a cold or allergies or both. Little did I know… Here’s the thing, I can sit and analyze the how, the when, the why, but it won’t change anything other than perhaps answer some curiosity. The important thing is that I went to the doctor. Eventually when I realized this wasn’t a run of the mill cold, I went to the doctor and demanded a biopsy. I had already watched that lymph node long enough, I was unwilling to watch it a day longer. And then the roller coaster began leading us to where I am now. Sitting on my bed, day 12 from my first surgery and day 5 from my second surgery. One less tonsil and 50 less lymph nodes with an enormous scar and a pretty big empty space in my throat. And I am in pain. It’s managed pain, but pain nonetheless. My jaw is sore from being manipulated, my teeth hurt from grinding through stress, my tongue is numb in some places and raw in others from being clamped during surgery, my shoulder is sore from carrying my arm through nerve damage, my incision feels like my skin is being pulled, my throat hurts each time I swallow, and my skull hurts from all the pain radiating into one central spot. Not to mention that eating and talking are my biggest obstacles right now. But, I am alive. This is temporary. And, I believe it will be worth it. I don’t feel sorry for myself and I don’t want you to either. But in full transparency (as I try to live my life) this is the real deal. This is hard and it hurts. I am still strong. I am still a warrior. I am still ME. But, I encourage you to always listen to your body. Go to the doctor and don’t delay. Demand that you get seen and don’t accept being placated. I saw 3 doctors before this cancer was discovered, each doctor reassuring me that it was probably “nothing”. I knew better and you do too. You know your body and you are in charge of you. Pay attention and make others pay attention, too. I don’t even allow myself to think about what would have happened if those cells were given a little more time to play in my lymph nodes, those little messengers being sent all over my body. So listen to yourself. Take inventory. Know that it’s not normal to feel “off”. And when you do, find the reason why. Chances are you only need a little more exercise, nourishing food, and fresh air. But, in the case it’s something more, I love you too much to wait. Get healthy. I plan on being here way too long, I want you here too. (I am not really sure who needs to hear that today, but if it’s speaking to you- then it must be you.) I’m heading back to sleep now. Or to watch TV. Or to listen your playlist. That’s really helping me stay present. I love you friends. SO MUCH. This is really hard, but easier with you beside me. Please keep showing up. We are still at the beginning of this road. To follow my medical progress and the needs of my family: https://www.giveinkind.com/inkinds/324/lands-family-love |
Amie LandsI am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days. Archives
May 2020
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