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.
Invisible beams of waves that eradicate cells, both good and bad.
I rely on this technology to save my life. As the machine moves around my head I close my eyes and imagine a white light and soft hands rested upon my neck, healing it with love.
There’s a beep that begins the moment that the machine starts to work. It’s loud and obnoxious and oddly soothing. It’s so loud that the music playing in the background gets masked which can sometimes be a blessing depending on the song of the day.
My head and shoulders sit inside a green mask that is bolted to the table. My left hand holds a large ring to keep my shoulders comfortably in place. In my right hand I hold a special rock, it’s painted with my three children against a night sky. It fits perfectly in the palm of my hand and is a constant reminder why I endure this painful treatment. Most times I keep my eyes closed to meditate but sometimes I open them and watch the machine circle around my head. I can see my reflection in the glass screen and where the green laser lines set against the mask and my skin.
Above the machine in the ceiling of the room, they have replaced the light covers with a scene of a blue sky with clouds and cherry blossom branches. It’s interesting because it’s near identical to the original theme for Our Only Time. It gives me comfort to look at that view.
And just in time to complete one or two songs, another beep is heard and the machine slowly moves back to its original position. I can hear my team walking back in the room, they usually tell me “nice job” so I know they’re there beside me, because I can’t turn my head and look. I like to give them a thumbs up, letting them know I’m ok. They unbolt my mask and remind me not to move as I’m about 4 feet in the air. The table gets lowered, they help me sit up and I stop to catch my breath before stepping to the ground
Physically, I feel the same leaving radiation as I do walking in. But most days walking in, I have an enormous burn on my tongue or on the inside of my cheek or the back of my throat. Not to mention the condition of my entire neck skin which is red, thick and already peeling. But, I’ve already started my day with pain meds, anti-nausea, antacid and laxatives-gotta keep things moving! So when I get off that table, my heart is racing upwards of 130 bpm. (I know this because they take my vitals daily.) And even though I won’t immediately feel different, my brain knows what I just did, and it sets my anxiety through the roof. I breathe through it and by the time I arrive at my second appt for the day, I’m usually calm again.
About 5-6 hours after radiation, I can usually tell where I’ve been burned the most. Today, it’s my tongue, the roof of my mouth and my cheek near my top molars. That should make eating interesting. Two days ago I went back to a liquid diet because the burn sores prevented me from chewing comfortably. I hate a liquid diet. My salivary glands have been affected from radiation and my mouth is now a constant combination of dry, mucousy saliva. It’s nasty. So add in a thick shake and my gag reflex is continuously ready to go. Oftentimes in the morning, I’m racing to rinse my mouth before I vomit upon waking.
But TODAY, today I completed my 30th and FINAL radiation treatment and I can finally look towards the next few weeks. But before I get too excited I have learned that radiation is like a microwave that keeps cooking once the timer has beeped. You know those directions that say, “let food sit before consuming” that’s because it’s still cooking. And for the next few weeks, I’m still cooking. So my throat, my mouth and neck will continue to feel the effects of the radiation doing it’s job-killing both good and bad cells. I don’t know what to expect from my body in particular, but they did tell me what NOT to expect.
“Don’t expect to wake up and feel better. The height of the pain will come this weekend and should plateau for about 2-3 weeks. Then, you will start healing.”
So I wait. First I wait until Monday for my final round of chemo. Then I’ll wait for the 5-6 days that chemo wreaks havoc on my body. Then another week or two for the healing process to begin. It’s ok. I’m used to waiting by now.
It’s been a LONG road so far. Months, really. But we’re nearing the third leg of the race; healing and recovery. I’m so close I can taste it-well, I could taste it if radiation hadn’t seared my taste buds!! But I can ALMOST taste it!!
And along this road, I’m so grateful for you. You, who read what I write for the better understanding of what my daily experience is. You, who want to be informed so you can support me. You, who love me every step of the way. You, who sent me love, well wishes, a surprises on this final day of treatment-knowing what an enormous day today is. I am SO grateful for you. Your encouragement gives me the strength to get through each obstacle to healing. One step at a time.
Today, I’m done with radiation!!!!
I don't get to write in my journal as much as I used to; a toddler, a husband, a career, a non-profit business, and the book that is near completion, take up all my time. My days are beyond full and the nights to recover are far too short but each day, I am pulled to moments out of this life as I feel this baby move, bounce, jump and tumble through my belly reminding me of life's fragility. It pulls me back to the core of my being, the person I now am and the person I have wanted to be my entire life-a mom.
I am a mom to the most perfect children, THREE of them now! My daughter, the girl who made me a mama- she changed me. She changed the trajectory of my life, what I thought would be, who I thought I was, what I was capable of achieving and the passion that now fuels me. My son, the boy who reminded me of the simple joys in life, who makes me laugh, who challenges my very patience, who makes me strive to be the best role model I can muster. My baby, the one in my belly, who has given me renewed hope that good can be returned to us, that we are worthy of a joy-filled life, that although what was taken from us can never be returned, we can still be a family and give our boy a living sibling.
It is not easy to balance all these obligations, these responsibilities, and this overwhelming love that pours through my soul, but I do it, perhaps not gracefully, but I do it eternally gratefully. All I ever wanted was to have a good life, and to create a family, to be a mom.
I am a mom now, to three perfect children who are the reason I strive to be my best and to live my best life. For them. All three of them.
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.