The unseen trauma. The never-ending thoughts. Talking myself through all moments of getting through each day.
What causes my anxiety? Everything. Most everything causes my anxiety.
Waking up. Getting out of bed. Taking a shower. Having daily appointments. Facing another 12-14 hours.
Being in pain. Not knowing how much pain. Fearing I won't be able to control the pain. Wondering when the pain will end.
Eating. Eating when everything is altered, challenging, or painful. Taste buds. Chewing. Pushing food to the back of my throat. Swallowing. Vomiting. Having to eat again. Hunger.
Leaving the house. The germs. The hugs. The potential of germs and hugs.
Speaking to strangers. Speaking to friends. Having to speak in general. Speaking through the pain and weight of a tongue I cannot always feel or move correctly. Not being understood. Having to repeat myself. Having to slow my speech.
Energy. Having energy. Having enough energy. Having to prioritize my energy. If I use my energy for this, will I have enough for that? How long will I have to rest after I _____?
Answering “How are you?”. Not knowing how I am. Not knowing how to answer. Compared to yesterday, last week, last month, last year. I can eat today. I can talk today. I can spend time in the living room today. I am good. I *am* good because I am alive. That's my barometer these days. But, I am not necessarily *good*.
Falling asleep. Calming my mind. Calming my body. Calming my nerves. Being woken from sleep. Going back to sleep.
But the anxiety is just that-anxiety. It is not real, but if only in my head. It is an ongoing conversation that I have to talk myself out of or medicate. But at some point, I have to learn to live through what I have lived through and when I can’t I won’t and I don’t.
I will ask for help.
I will take my meds.
I will tell a friend.
I will be my friend.
I will breathe.
I will know that this is temporary even if I don’t know how long temporary is.
And, I will rejoice that I am alive. Because once again, I *am* good because I am alive and life is (still) good.
Even through anxiety.
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!
Relief, sweet relief.
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 mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.