A Rollercoaster of Loss and Gratitude: My Experience of Cancer Treatment

First and foremost, thank you for the incredible support you’ve given me through your donations and the caring words which accompanied them.  I was moved to tears multiple times by your generosity, which sustained me these past five months while I had no ability to earn income.  I never had to set up a fundraiser thanks to family and friends near and far, with significant input from several of you connected to me through massage therapy.  I’m so grateful for all of you, and for the quiet warmth and depth of my relationships as a career massage therapist.  If it proves true that I gave my last massage in May, through your generous giving in my time of dire need, you co-created the best and most beautiful part of that ending.

The next chapter remains unwritten, as I’m still healing.  I was just approved for federal disability, with the expectation that I’ll become well enough to return to some kind of work in the future.  I’m still processing the event of tongue cancer and the impact it’s had on my life, as it hit me broadside, without the known causes.  I don’t know what the future holds in terms of my work life or what I’ll be capable of offering the world.  Cancer took from me my identity as a massage therapist, although I may be able to provide another form of bodywork someday. I’ve lost significant range of motion in my right wrist and feeling in my right palm, so I’ll never be able to massage anything like I did.

"Eating." All cancer survivors are challenged digestively at some point.  But tongue cancer is a very painful and debilitating cancer because it makes eating itself so difficult, before and after treatment, making malnutrition a concurrent dis-ease.  Ultimately, I lost 31 lbs., most of which was muscle.  Side effects of radiation treatments included sores on my tongue and throughout my mouth from the radiation burns, which the body responds to with mucositis (painful inflammation of the mucosa), mucus in the mouth, and excessive saliva.  At the same time, intermittent dry mouth occurs from radiation’s damage to the salivary glands.  At their peak, these side effects make eating by mouth nearly impossible, even with pain medication, so my feeding tube saved the day for five weeks nearing the end and after radiation. 

All of this is ongoing, although much improved in recent weeks, and I rarely use pain meds.  Gradually, I was able to take 100% of my calories by mouth, and the tube was finally removed 🥳 last week, 144 days after it was placed (down my throat from nose to stomach to bypass my mouth as it healed).  I find it impossible to convey how hard I worked to reach that 100% goal, but I can say that I’m glad it’s behind me!

Removing the tube is a healing milestone and makes everything easier for me, from eating to washing my face & brushing my teeth to socializing.  I still need to gain 20 lbs. to reach my normal weight, or a healthy weight for anyone my height.  That can feel out of reach when it takes the better part of 14 hours to get even 1,500 calories in me, and on some days I lose overall stamina and am ready for bed sooner than that.  Having the tube gone tends to revive enthusiasm for eating, and although I immediately increased my average daily calories, it’s not yet to a weight-gaining amount.

Eating for me is still mostly drinking – liquids and pureed soft foods – and it’s still painful when food comes into contact with unhealed parts of my reconstructed tongue.  There are many aspects of eating I miss, including cooking smells, the mouth feel of a hundred foods I could name, chewing, and the socializing and fun of it.  Even once my tongue is completely healed, it will take me longer to eat than anyone around me for years if not the remainder of my life, and some foods will remain off limits.  Eating is featured almost every time people gather, and this loss to my quality of life now and ahead of me is something I’ll grapple with accepting for a while.

Another issue with my new tongue is my resulting speech impediment.  I won’t know if it’s permanent for at least five more weeks, until my surgeon re-examines my tongue.  This weighs heavily on my mind some days, as my speech impacts how I’m perceived in all environments.  I’m grieving my singing voice, and still not used to the sound and limitations in tone of my speaking voice, which is no longer “calming.”  When listening to old voice recordings on my phone, I feel that Kathryn is simply gone.

That same week ahead is the first of my post-treatment cancer screenings, which continue for five years, as way too many of you know.  With around 5% of Michigan and North Carolia residents experiencing cancer these days, several details of my story are familiar to you, yet I feel it’s helpful to many to share some of my particulars.    

Aside from the burns in my mouth, other side effects of chemotherapy and radiation include the typical hair loss.  I didn’t lose anywhere near all my hair, though it’s still falling out and balding at the right nape of my neck, which was in my radiation treatment field.  I had already cut it short, not because I wanted to this time, but to better manage it given my lack of mobility in my right forearm as it healed from surgery.  I expect my hair to take longer than usual to grow out again. 

The fibrosis of my skin, fascia, and muscles on the right side and front of my neck is a lifelong side effect of radiation.  Glands, nerves, arteries and veins, and lymphatic nodes and vessels are also impacted.  I wake up every morning with stiffness and will need to stretch multiple times daily, forever, just to keep it from becoming totally immobilizing, not to resolve it.  For this reason, working a job at a computer sounds like torture to me now and something I'll avoid. I’m presently in physical therapy for my right shoulder, which lost 20 degrees of range of motion since my surgery. 

Lymphedema on the right side of my face and neck is likely to be a lifelong side effect of the removal of many lymph nodes, surgery scarring, and fibrosis.  I can relieve some myself, but the best results will come from Manual Lymph Drainage sessions, which I’m scheduled to receive after the new year.  I may become a MLD therapist myself 🤔 depending on how I heal; time will tell.

Loss of stamina is another long-term side effect of radiation, though I’ve heard it varies a great deal among cancer survivors.  It always takes me by surprise, because I can be having an upbeat, energetic, and productive day when it just comes over me, like a raincloud.  What this means for my working future is another unknown.  Ironically, massage therapy would’ve been a great profession to accommodate this side effect.

All that said, I’m so grateful for many aspects of my life, including being blessed with dozens of people praying for me since May, which was undeniably impactful.  I was blown away by the power of prayer in my case, and it inspired me to give back by establishing my own sustained prayer practice, so if you ever have a specific prayer request, just text or email me.  Distance Reiki is also available through me, complimentarily, only with your permission (I’ll be posting on the topic of Reiki relatively soon). 

Thank you again SO MUCH for your caring support and positivity.  May you feel great, eat well, and thrive all your days! 💗

p.s. This little blog isn’t going anywhere.  I have ideas for posts yet and certainly want to continue expressing myself and staying connected with you through my writing, as my health allows.  And eventually, I’m going to write a series specifically for tongue cancer patients for which I might charge a nominal fee.  Idiopathic tongue cancer is on the rise, and I’d desperately wished there were more anecdotal survivor stories out there specific to this cancer, so I've decided to put mine out there.  Thank you so much for sticking around!