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.