It has been 6 months since treatment ended and nearly a year since my diagnosis. It’s crazy to know that this time last year, I thought I was healthy. Only, I wasn’t. And, I didn’t feel healthy. Once a triathlete, lover of anything active outdoors, I could hardly talk myself into taking my kids to the park I was so tired every day. I thought this was the life of parenting two young boys. I never regained energy back after having my youngest son and thought everyone must feel like this. So, I forced myself to walk and cycle to work each day. That old saying that exercise will give you more energy did not seem to be working, but still, I tried. I only work a mile from home, it’s not like it was extreme exercise or anything.
I think about that time and how tired I was and in retrospect, I can pinpoint exactly when my symptoms appeared and it was even a year before then! That sore throat that was supposed to be allergies, or a cold, or post nasal drip...So, how long had I had cancer before diagnosis? I will never know for sure. But I do know that I lived with it for over a year at minimum.
But now, thankfully that time is a memory. Well, it would be a memory if I actually could remember anything. Chemo brain is real. Or maybe it’s the radiation to my head. Realistically, both are so damaging to the body.
My memory is so shot that names, days of the week, the month, and sometimes the year are hard to recall. And don’t get me started on that word I can’t remember...But truthfully, I am lighthearted about the memory loss feeling a kinship to Dory, the fish. She was so happy and her memory loss only affected those around her, not her, so sorry (husband) about that! I do live more in the moment now, which for me is such a sweet gift since I am unable to multi-task as I once did. I am not sure if this will be a permanent side effect or life-long but I don’t worry about it, I am appreciating the slower lifestyle for now.
But cancer is still a common thought in my mind although I wish it weren’t. Sincere comments on my looks are a daily reminder of what I endured to look “so healthy” or be “so thin”. If only my insides matched my outside appearance. I would gladly take back my puffy face and 35 pounds lost if it meant I didn’t have to feel the constant tightness in my neck and shoulders or if I could turn my head to the left without my voicebox being constricted. It would also be awesome to have my salivation return. I would love to eat food without a glass of water on standby in case I choke. And, chewing gum while teaching is a bit hypocritical for my students for whom gum is not allowed. And the PTSD...
The PTSD felt by this diagnosis and following treatment is real and not only felt by me but also by my husband as I am discovering more as time goes on. I can only imagine how terrifying it was to be a helpless bystander to my treatment after watching our daughter die. Quite honestly, the emotional effects are probably a bit lighter for me because of all the anxiety and pain meds I was prescribed, I don't really remember much of it-except the pain. The fear of a sunburn on my neck is enough for me to invest in hats as my favorite outdoor accessory for life. And EMDR therapy is my new best friend. (I highly recommend it,)
But life is full of life now, even amidst the side effects and trauma. Each day I wake my first thought is of my neck because the skin tightens overnight and I have to stretch it out and massage oil into it, but I do so lovingly. I still thank my missing lymph nodes daily as I rub the scar that looks more like a wrinkle now. But my second thought after my neck is that life is (still) good. It has been hard, terrifying, heartbreaking at times but I am still alive. I am so grateful.
Returning to work has been amazing although exhausting. I wish I could have afforded a bit more time off to heal. But in returning, I have eased my way back into teaching and although I am not doing so or ready to yet, I hope to be fully ready come August. And family time is richer now, knowing that for a time I could only listen from my bed as Chris laid them down each night. Now I get to participate again and I have never loved bedtime so much. And friends. My energy doesn’t allow much for socializing yet, and I do miss events from exhaustion or take a few days to recover when I do attend, but it is so worth it. Every day to wake up alive is so beautiful. Even the hard moments when I hate cancer, I remember to send my body love and gratitude for all it has endured.
I feel like I should celebrate the day that I was diagnosed. Although that day and that moment was beyond terrifying, it was an awakening to yet another life, another opportunity to do differently, and remember life’s fragility as was so apparent after our daughter died. It has become yet another chance to be sure that I am living the life I want and being a person I am proud of. And, I am. I have survived a LOT, so much that I wouldn’t wish upon anyone but I still wake up and smile. I still want to live life fully. I still have more to do here.
So, here I am. Living life full of life. And once my energy FULLY returns, you better watch out! You thought I did a lot before cancer, I have so much more to do!!
Until then, I am still healing. They warned me to expect to recover and heal for at least a year after treatment and it appears I am right on course. In the meantime, I continue to take care of my body, my mind, my soul and connect with that which is beautiful in life by LIVING. It isn’t easy, is a constant choice, but a choice so gladly made.
Life is (still) good.
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 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.
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.