April 1, 2020 I was diagnosed with HPV 16+ Squamous Cell Carcinoma – in layman’s terms, throat cancer caused by HPV – Human Papilloma Virus. P16+ is just one of many varieties and one of the most highly curable.
That being said, the treatment is excruciating and recovering from treatment is often even more so. Typical treatment, depending on individual cases and location of tumor(s), is 35 very highly “aimed” radiation treatments (5 days a week for 7 weeks) and (in my case) 3 intensive Cisplatin chemo therapy infusions, 1 every 3 weeks during radiation.
Because radiation typically burns not only the outside of one’s throat, but also the inside, most people have a feeding tube of some sort. I had a G-Tube installed into my stomach at the end of my first week of radiation. It, unfortunatly, leaked gastric fluids into my abdomen within the first 48 hours and I ended up in the hospital with a fever and septic from the infection. This is a very uncommon situation.
By the time I left the hospital, radiation was already affecting my sense of taste. Everything tasted like … cardboard? By the end of the third week I was starting to use the feeding tube due to 1) swallowing hurting, and 2) a thick mucous developing that made it icky AND harder to swallow. These ARE common side effects of radiation. Hair loss where the radiation is concentrated and jaw bone deterioration are also common side effects. Damaged saliva glands and the ability to taste (sometimes temporary and sometimes permanent to varying degrees) are common.
Cisplatin has it’s own special side effects. It doesn’t normally cause hair loss like most chemo therapies. It can cause hearing loss. It does, in some indiduals, cause nausea and low white blood cell counts. I was spared the nausea and blood cell count issues, but have since lost some of my high-frequency hearing.
By the time my 35 radiation sessions were done at the end of June, 2020, about 2 inches of hair at the back of my neck was gone, I was going through a box of kleenex a day dealing with the horrid, thick mucous, I was lucky to swallow an ounce or two of liquid and was unable to eat anything by mouth due between the mucous and a very sore throat. Another commonality. Many manage the pain by opiods. I was fortunate to avoid taking any pain meds.
Had I not lived it, I would never have imagined that it would take yet another 9 months of mucous, sore throat, fatigue and tube feeding as close to 1000 to 1200 calories a day as I could manage (my dietition wanted me consuming 2000 but I simply couldn’t – I would have been feeding 24/7) before I started feeling better. I ultimately lost 60 pounds between May 2020 and June 2021. Thank goodness I had it to lose.
In late March, 2021, after months of trying and trying again to eat anything, discovered that I could finally eat a soft boiled egg and half of a half of an english muffin. Every day I tried eating anything that sounded good. By April I was using my feeding formula less and less as a supplement to what I was able to eat, and ultimately stopped tube feeding. My dietition told me when I could maintain my weight for a month eating by mouth only, she would have my tube removed. June 1, 2021 was my INDEPENDENCE DAY!
The last 14 months have continued to be a little bit of a struggle to maintain my weight (not lose any more) but I’m managing. My saliva is minimal, my taste buds were somewhat there, but after a bout of COVID-19 the first few weeks of May, my ability to taste seems to have waned greatly. Lately my swallowing reflex seems to get fatigued while trying to eat enough calories each day – and I find myself aspirating liquids a few times a day.
I’m seeing a lymphatic massage therapist to help keep lymphatic fluids from building up in my neck, doing neck stretching exercises religiously to help minimize fibroid tightness in my neck, taking Vitamin D regularly as my thyroid seems to have been somewhat damaged. The level that is low normally causes weight gain and is treated with a medication that surpresses the appetite – the LAST thing my PCP wants me to deal with.
Life is a little more of a pain in the ass these days – but at 2 years out, I remain NED – no evidence of disease – which is the best possible outcome. I’ve still got three years to go before considered fully in remission. And when I look at the alternative? I’ll take the side effects.
Three words that have gotten me through this? HUMOR, GRACE AND COURAGE – every damned day.
Have you dealt with HPV Head and Neck cancers? Share your story.
Luv ya!
