My husband eats to live. I live to eat. I love food. It’s a statement of gratitude I must say at least once per every meal. Sometimes I wonder how he and I have been together for 17 years when our appreciation for food is so distinct. But, I love him despite his shortcomings… of food!!
But food has been fuel for the last 8 weeks. ONLY fuel. And beyond sad, it has actually been scary and traumatizing not being able to properly fuel my body. Most people with this cancer opt for a feeding tube and for good reason. Radiation to the throat is excruciatingly painful. Burns, sores, ulcers prohibit swallowing and speech, too. Chemo changes taste and turns flavors to the likes of chewing metal. Nausea and vomiting doesn’t allow proper nutrition to fuel your body and the dehydration destroys your organs. So a feeding tube allows for easier fueling of the body and hydration without numerous trips to the hospital. But, I love food. And there is no greater motivation for eating (even in painful situations) than hunger. I also had other trepidations for avoiding the tube. I was scared of the procedure, of the unknown and of potential side effects such as infection and pain at the site. I was nervous to acquire atrophy to my throat and tongue muscle, leading to therapies and prolonged recovery.. So I did not enter blindly. I had several appointments with the Med Surg nurses, a dietician, both my medical, radiation and naturopathic oncologists. I weighed in their opinions, created a plan and hoped I could adhere by it, to fuel my body through trauma, into recovery and then healing. But, I also didn't realize the severity of what was to come or how incredibly painful things would be in combination with both chemo and radiation happening concurrently It was HARD. Within the first week of chemo and radiation, my mouth changed such as:
There were days I could hardly swallow and would have to numb my throat with lidocaine to swallow an 8 oz 600 calorie shake three times a day. And then I would vomit up all that hard work. And that started in week two, with so many weeks to go. Then the radiation burns appeared and when you attend treatment daily, you just continue to burn and re-burn the same space over and over again. We are now at week 8 and I am still waiting for this ulcer to heal. It is my last residual pain. 6 weeks of modified foods, shakes, soups, soft foods and no chewing. Eating and hydration are a full-time job when you feel like doing neither, pain and nausea prohibiting your body to do what your mind knows it must. Counting calories ensure I don’t lose TOO MUCH weight because lost weight was a guarantee and counting ounces of fluids keeps me at a minimum in the infusion clinic for hydration IVs. But here we are, 2 weeks post-treatment. My daily foods are minimal. My foods must be nutrient dense and high in calories, fat, and protein. As of now, I am eating mostly:
I would like to eat so many other foods but until my mouth is healed, I am limited in my choices. I try many new things every day but can never be sure if it will pass “the test”.
It takes tremendous thought and unfortunately a bit of wasted food. But I just keep trying. I will try most anything because I love food——and because I have weight to gain and fuel gives me energy. I am SO ready to join life again! Food is still my favorite and thank goodness it is. I don’t know that I could have persevered if I couldn’t imagine what food should taste like when it had zero flavor in my mouth. And still, I only taste about 50% of what I am eating. That should return, they hope. And I hope it returns before I am teaching 100’s of middle schoolers how to cook! So for now, I look at it as a challenge. What will my new favorite foods be? What have I not tried that might be good now? I love food and am determined to continue loving food, so CHALLENGE ACCEPTED!
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Relief, sweet relief. Well, kinda. Enough relief that I want to share. When you are in the midst of something terrible, it is so hard to see the other side. And finally when you turn a corner, the other side suddenly becomes visible. So Saturday was the hardest chemo day. I knew it was coming but you can never quite prepare for how you’re going to feel. But when it came, I could not take one more moment and thankfully when I woke Sunday, I didn’t have to. A combination of IV fluids, real food, apple juice, and pain meds are getting me back on track. Hopefully to stay in that direction. I woke Sunday morning with the urgency to eat. Well, after I vomited of course. But I had the determination that in order to feel any better I needed to have calories, REAL calories in my body to initiate and sustain my healing. Eating sounds like it should be easy enough, especially knowing my love of food. IN normal life, this would be a dream come true! Just pick a favorite food and go for it! But, my love for food has many obstacles and isn't that easy after treatment for Head and Neck cancer. So many things stand in the way of eating normally: Salivary glands are destroyed during radiation Taste buds are augmented or non-existent The enormous sore on my tongue makes chewing near impossible With every swallow, my mouth burns Nausea meds have to be timed just right to get under control If anything touches my gag reflex the wrong way, back to vomiting and then all the eating is for nothing! My olfactory is heightened and given my gag reflex and nausea, that isn’t a great combination! Many people in my situation opt for a feeding tube throughout treatment. It helps to keep weight on, allows for an easier caloric consumption and eliminates the need to swallow through pain. But it usually stays with them for quite sometime after treatment ends. I chose not to do so because….I am stubborn. And I hate anything medical happening to my body (ironic right now!), I was scared to experience a potential additional pain site, and I didn’t want to risk tongue atrophy or additional food aversions. But what that means is I really have to talk myself into eating, especially considering all the things I mentioned before. It’s hard for me to breathe a real sigh of relief when I am still in a pretty fair amount of pain, but I have learned that every day is so unpredictable so I am going to celebrate that the last two days have both been an improvement than the one prior. I can only be here now and in this moment, I am going to BREATHE and hope once again that tomorrow is better than today. Here’s to healing a little more each and every day. I am currently in the aftermath. The point at which there are no active treatments to be exposed to but my body is still reeling from the radiation and chemotherapy pulsing through my body. I wish I could say this week has been restful. I wish I could say I am healing. I suppose at a cellular level I am but emotionally, I am walking a tightrope of anxiety. Two days before radiation ended, an enormous burn appeared on my tongue-right in the place where you talk, or chew, or do quite anything. And then of course chemo was the following Monday so I exposed my body to the gift that is chemo, sensitizing the radiation to better do its job, but that in turn also subjected my nerves to the extreme. So this week has been filled with pain, nausea, vomiting, dehydration, hydration IV’s, lack of nighttime sleep, inappropriately timed naps, craving a food, vomiting that food, weight loss, neck scabbing, hair loss, and just pure anxiousness. My brain is foggy. I am exhausted. I am just plain worn out. I take my pain meds. And anti-anxiety meds. And anti-nausea meds. I practice pain management meditation. I watch senseless TV. I listen to my “warrior” soundtrack. I cry. I smile when my boys come home. I cry a little more. But I haven’t breathed a sigh of relief at all. I know this is all part of the treatment, I was informed before getting here. And I know this is temporary, I will not feel like this forever, but when you’re in the thick of it it can be so hard to see or even imagine there is an other side to this experience. I don’t know how long this will last. I wish someone could give me an actual date for relief. I do so much better in the knowing than in the unknown, but this has been a tremendous learning curve of letting go, of surrendering control, of allowing what will be to be. Each day I write in my journal that tomorrow will be better and each day as I wake, I hope that to be the case. Eventually, it will become truth and tomorrow’s new day will be better than today. And even though I have never felt weaker, THIS is strength, waking anew each day and never giving up. Even when that sounds so much easier. So here's to tomorrow. Again. |
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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