You don’t really notice how central something is in your body until it is in pain, but the pain was there the moment I opened my eyes. The soreness in my throat does not feel like anything I have felt in my life before cancer. It’s not like strep throat or a cold, or allergies even. It’s dry. It feels scabby and tight. When I open my mouth it feels like the scab is cracking. I have to stretch my mouth in the mornings, not to mention that my tongue never regained full sensation of feeling since surgery. The right side of my tongue now feels like the day after you burned it on a delicious piece of pizza, it's on fire. All day. It’s tolerable, but not comfortable and is heavy-because of the nerve damage. It takes a ton more concentration to talk now, and Lord knows I like to talk!
So when I woke on day 10 of radiation and pain had already arrived, my anxiety set in. I’m not ready yet. Not ready for the weeks of pain that they warned me will come. I don’t want to do it, although I am already in it and there’s no stopping this train. I think surgery really did a number on my psyche with major PTSD over here. I have a super high threshold for pain. I would rather have had unmedicated childbirth than the IV and catheter (which is ironic since I now have at minimum 2 IV’s a week!) But when I woke from throat surgery and immediately couldn’t speak or swallow, that loss of physical control was nothing short of terrifying. And then it lasted for TEN days. It felt overwhelming and scary.
Now, I face an unknown pain. I know the accounts of others with this cancer treatment, yet because it’s anecdotal evidence I can’t assume what my experience will be. I don’t know exactly, only what it ‘could be’ and that is daunting.
So, I am really working on my fear through this, fear of the unknown, fear of the potential pain, fear of losing control of my body, emotions, and mindset. I really numbed the week of chemo, which was necessary to withstand the treatment, but I don't want to do that when it's not necessary. I don't want to miss life.
The last 2 days I haven't taken anything for my anxiety and I am working through these feelings, reminding myself that “fear is a construct that we create” (thanks, Chido). And years ago in my Al-Anon days, I gratefully relied on the idea that faith and fear cannot occupy the same space, so I must choose in which I believe. But, that's easy to say, do, and practice when I am feeling physically strong.
Loss of control has been a lifelong struggle. It is how I feel safe. It was how I created safety when I was young and life was unpredictable with an alcoholic parent. So, I know this is one of the lessons that I must learn during this treatment. Trust. Letting go. Relying on others. Requesting and accepting help gracefully. Believing that I am worthy.
I never allow life to happen TO me. Life is happening FOR me. And I am present, learning, growing, and grateful. I refuse to let life experiences pass by without growing from them or falling victim to them. I am not a victim. I am a survivor. A warrior.
For now, I am living in THIS moment and finding joy in my home, with my babies, and treating myself kindly, remembering that all in life is temporary, even life. And in 5 minutes, I may find myself fighting fear again, but this is a process and I am grateful to be alive for it. I am grateful for the chance at living, even when facing pain.
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.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.