I recently returned from spending time with my parents and younger sister in Arizona where my mom continues to undergo radiation and chemotherapy treatment for the squamous cell carcinoma with unknown primary that had metastasized into 2 of her lymph nodes.
Unknown primary = no idea where the primary tumor is hiding, but finding cancer in the neck lymph nodes indicates the face/sinus, neck, or throat area. Neither CT scan nor MRI, both with contrast dye, could find the tumor from whence the cancerous cells were coming. The best guess of my mom’s doctors is that it’s hidden somewhere in the tonsil area.
The elusive nature of the cancer has been a source of frustration from the beginning, because the “luxury” of knowing where it is would have allowed for a more focused radiation treatment with less side effects. But, as preschool teachers sagely repeat across the land: “You get what you get and you don’t throw a fit.”
(Or you do throw a fit, but that doesn’t change a damned thing; you want to live, you get the all-over face and neck radiation – and that’s the deal, kids. Plus, every lollipop tastes like an overwhelming sense of your own mortality, so no point in fighting over which flavor anyway.)
The treatment for this type of cancer is 36 generalized neck and face area radiation treatments performed 5 times per week, plus 3 chemotherapy sessions, with no break during chemo weeks. Because of weekends, this takes at least 7-8 weeks, and means that 3 weeks are spent post-chemo, still having to drag one’s nauseated, exhausted soul-shell to the daily radiation sessions, which are also physically debilitating.
From what I’ve witnessed, I’d surmise that the goal of chemotherapy and radiation seems to be trying to come as close as possible to killing the patient while not actually doing so, and hopefully destroying all cancer cells in the process.
A few weeks ago, I flew to Arizona feeling grateful for my husband and his parents, who saw my son through the last few weeks of school. I was determined to help my mom through at least part of her radiation and chemotherapy.
My older sister had already flown out from Kansas to help and had returned home, and my younger sister who lives 40 minutes away from my parents had been doing much of the helping, so I was also hoping to give her a break.
I wore a medical mask on the plane because I’m prone to all things viral and respiratory, and my mom is immunosuppressed because of the cancer treatment, so it was very important that I not catch anything with my weak-ass lungs if I wanted to help her.
I decided that I enjoyed not catching my usual recirculated airplane airborne virus so much that I wore a mask on my flight home, too. I will never fly without one again. (You say, “Paranoid weirdo in the mask-ay-toe,” I say, “Enjoy your flu or norovirus, sucker-ah-toe.”) (Actually, let’s call the whole thing off. I hate flying.)
My younger sister picked me up at the airport, and we arrived at my parents’ house while they were still at my mom’s daily radiation session. I immediately got into the shower to decontaminate myself, and my parents got home while I was dressing.
My mom had been in treatment for over 3 weeks at this point, her feeding tube surgically installed weeks before the radiation began in anticipation of the loss of the ability to swallow, which generally happens around the 3rd week of throat radiation for most patients. She’d also undergone 2 horrible chemotherapy sessions at this point, so I was expecting an emaciated bald woman.
I was pleasantly surprised to see my normal-looking mom standing there waiting for a hello hug. My mom with all her hair, looking somewhat Nordic because her un-dyed tresses are currently a lovely shade of golden blonde and she wears no make-up… but still my mom. My paler-but-surprisingly-robust-considering-the-hell-she’s-been-through mom. She’d only lost 5 pounds and could still swallow soft foods and liquids, despite the doctor’s warnings she’d be completely dependent on the feeding tube by that point. This woman is made of some seriously tough stuff, y’all.
(Her particular chemotherapy drug causes hair thinning but not necessarily complete loss, so she might hang onto much of that pretty blonde hair, too. Fingers crossed, but really, she said she doesn’t care. It’s just hair and it grows back. What she’d really like is to eliminate all the cancer, of course.)
Aside from the pale factor, the only visible sign of her battle was her poor neck, which looked like it was covered in the worst sunburn ever. Radiation burns skin to a crisp, and she had to keep cream or ointment on it constantly in an attempt to soothe it. Gentle hugs for my mom right now, because that neck looks like someone threw acid or took a branding iron to it. By the time I left, there were open blisters on it. Ouch.
One of the worst and most painful things my mom has had to deal with are mouth sores, which are apparently a common problem for people during chemotherapy.
Because they are aggressively radiating her face, neck, and throat, she almost immediately lost her sense of taste and developed extreme dry mouth, because the taste buds and salivary glands are sensitive and generally the first to go during this particular treatment.
Some people heal and get their sense of taste back after radiation treatment is over, and some never taste again. Because my mom happens to be an amazing cook who often wins cash and prizes via cooking contests – even competing in the World Food Championships in Vegas last year – this is an especially cruel twist that we pray will be temporary for her.
She still retains her sense of smell, so her focus has been on eating soft, fragrant, sore (radiated) throat-friendly foods, such as finely chopped bananas in oatmeal and soothing soups. She can’t eat anything acidic like citrus, so we tried to find mellow foods for her. Her lost sense of taste renders sweetener unnecessary, so when I made her custard, I omitted it.
This side-effect – the inability to taste – would become one of those odd blessings wrapped in a curse, because my mom has taken diabetes medication for years. But without a sense of taste, one can’t indulge a sweet tooth, so she stopped eating most sugar. By the time I left, she’d lost 6 more pounds and was no longer taking her diabetes medication, as every time she checked her blood glucose levels, they were no longer in the diabetic range.
Diabetes impedes healing, and my mom is a freakishly fast healer, so I’m hoping that her newfound control over her blood sugar levels will only enhance this quality.
The stomach feeding tube had yet to be used when I left, which places my mom firmly into a very small percentage of lucky people who can still swallow liquids past week 4 of this particular treatment.
In general, people eventually lose their ability to swallow, must use the stomach feeding tube for all nourishment and hydration, and undergo physical therapy post-radiation to re-learn how to swallow. Some get this ability back and some are not so fortunate, requiring the feeding tube for the rest of their lives due to throat damage.
My amazingly strong mother had 1 chemotherapy session left, a weekend to heal, and then 1 more week (this week is her last!) of radiation to go when I flew home to my husband and little boy. And not only was she not yet using the feeding tube, the woman was still eating oatmeal, eggs, soft foods, and drinking 80 ounces of electrolyte water daily to keep herself healing and healthy. I was blown away by her fighting spirit and steely German constitution.
That said, the feeding tube was also a constant source of irritation and pain, as stomach acid leaks out around the hole from which the tube extends, and no matter how well you clean it and try to create a barrier with triple antibiotic ointment, the skin still becomes red and burned around the opening. It must also be cleaned with peroxide and water has to be run through it every day to clear out food particles that have come up through the tube.
I told my mom that the day she gets that damned tube out I’m going to have a “My Mom Got Her Feeding Tube Removed Today” party, no matter where I am in the world, because it made me so unhappy to watch her having to deal with that. I know it was a necessary precaution, and my mom has thus far defied the odds by not needing it when most patients do at this point, but I am really looking forward to the removal of that damned thing so her comfort level can go up by eleventy-billion percent once it’s out and her stomach is healed.
Because the radiation can cause people to lose jawbone mass and their teeth, or create a permanently locked-shut jaw (trismus) if the radiation-damaged tissues scar and heal too tightly, my mom has also been doing daily strength training for her mouth with a mouth exerciser (Therabite) that looks like some sort of medieval torture device.
The device uses tension at whichever setting the user chooses to break apart scar tissue before it can form, stretching the tissues and hopefully preventing a locked jaw. The goal was to find the balance between the good ache that means you’re keeping the scar tissue from forming, and the sharp pain that means you’ve broken your weakened jaw or a tooth.
My mom tried to do her mouth exercises repeatedly throughout the day, only dialing it back if it started to hurt too much out of fear for her bones and teeth. She noticed she could open her mouth much wider at the end of a session, so it seemed to really help.
I quickly realized once I got to my parents’ house that there wasn’t much I could do beyond cleaning, because the list of foods my mom could eat was limited. So considering her immunosuppressed status, I decided to do what every mother who’s dealt with multiple viruses thanks to a child enrolled in public school does well: I sterilized.
My good buddy Lysol and I know all the hot spots: the remote controls, the phones, the light switches, the doorknobs, the drawer pulls, the dressers, the toilet handles, etcetera, and together we made sure there was nothing harmful lurking anywhere in that house.
I am admittedly a bit of a germaphobe and love to clean, organize, and sterilize things, so this was my chance to shine. I sterilized the bathroom and kitchen surfaces every day, cleaned the tile floors, and scrubbed all toilets in anticipation of my mom’s last round of chemo, because all I could think about was that when I’m in the throes of puking, there’s nothing more miserable than having to do so into a filthy toilet.
But my mom wasn’t able to do her final chemo session while I was there as planned because she hadn’t yet recovered from the last chemo session and daily radiation. A healthy immune system is between a 4 and a 10, but when the doctors checked my mom’s white blood cell count, she was a 1.3, which means she essentially had no immune system.
This made my sister and I extremely glad we’d opted out of a family birthday party we both really, really wanted to attend, and a pool party that sounded fun as well. We thought we were erring on the side of caution for our mom’s protection, or perhaps being paranoid, but once we found out her immune system was null, we quickly realized we’d potentially preserved our mom’s well-being by skipping close-contact gatherings. The nurse told her she shouldn’t even be going to her doctor’s office appointments without a medical mask on, so she began wearing them.
Mom got shots of a drug that encourages the body to make white blood cells faster, and even though she had to miss what was supposed to be her last chemo session on Monday, by Friday of the same week, her immune system/white blood cell number had gone from a 1.3 to a 6+ which made her able to do the final chemotherapy treatment.
(See what I mean about how strong she is? Some people don’t get their immune system back for months after chemotherapy. A few shots of Neupogen and she was back into the normal range! Wow. Go, Mom!)
During her final chemo session, she was happy to find out that the really mean nurse who seemed to take pleasure in barking nastily at patients had been “let go” as a remaining (nice) nurse told her, because if there’s one thing nobody needs in the middle of a cluttered, depressing room full of 15-20 other people in reclining lounge chairs as they receive their chemotherapy IV drugs along with you, many of them puking and crying, is a bitchy woman who seems to completely lack empathy. (Time for a career change, Ms. Ratched.)
My sister drove our mom to her post-chemo IV hydration sessions (chemotherapy makes people extremely dehydrated), and emailed me this awesome bit of information today:
“Mom went in for hydration today. Came home super hungry. Which figures, she’s lost a lot of weight this week, being as she’s afraid to eat after chemo.
Anyway, she told the nurse what week of treatment she was in, and when the nurse found out she was still eating, she was VERY surprised. Said in 10 years of being a chemo nurse, she had only had one other person with Mom’s treatment make it all the way through and still be able to swallow. Said she had a family member (her cousin who was in his 30s when he was diagnosed) get the same kind of cancer as Mom’s. His showed up in the tonsil. He only had radiation to one side, and he still wasn’t able to swallow past week 5. Had to rely on the feeding tube, and he lost 50 pounds. Was 180 to start and ended about 120 lbs. But 10 years later he is doing fine, and he did regain some taste. He also did recover the ability to swallow.
Anyway, she basically confirmed my hunch that Mom was somewhere in top percentile in terms of handling this treatment course.”
Wow. And RIGHT ON, MOM. I knock on wood as I type this, being the superstitious type and all, but I predicted from the beginning that my mom would never use that feeding tube. Because I knew from personal experience, as the daughter who inherited her “strong will,” that the best way to make an incredibly stubborn woman do something is to tell her she won’t be able to do it.
“Oh, I won’t be able to swallow due to the throat swelling? It’s so cute that you think that. WATCH ME.”
One thing my family and I found shocking was the discrepancy between the radiation facility and the chemotherapy facility.
I went with my parents to all but one radiation appointment, and the waiting room was beautifully decorated, with a flowing water feature cascading down the wall, decorative circular plates in pretty colors descending from the ceiling, and a fresh coffee station. The chairs were padded and comfortable, and the room was professionally decorated in soothing shades of blue-green-grey with pale yellow accents.
The staff was friendly and kind, even allowing my stepfather and me to come back to see Mom get into the radiation machine and have the plastic netted mask designed specifically for her face placed on to clamp her in a still position. It looked very clean, professional, and modern.
And then there was the chemotherapy treatment facility.
My mom said the early episode of Breaking Bad in which the main character has chemotherapy in a really awful room with many other people at the same time very much echoed her experience. She told me about the chairs lined up in a room too small for so many people with just enough space for IV poles between them, and about watching the woman next to her in pain, throwing up in a pink bucket and crying as she received her chemotherapy drugs, and how upsetting this was.
I couldn’t believe it. Like chemotherapy doesn’t already hold the official title for The Shittiest Ordeal Anyone Will Ever Endure; now some medical company has managed to make it worse for people? Jesus.
In addition to incredulity, I felt furious. Considering how much money these clinics receive from insurance companies (and uninsured people) for these treatments, the very least they could do is provide a damned sliding partition, if only to prevent airborne vomit-germs from infecting the other immunosuppressed people in the room.
And how about a television, nature sounds, soothing music or something to give already nauseated, weak people a distraction from a very sad and psychologically unhealthy environment?
Greed, greed, greed. That’s why not. Those little touches of humanity cost money, and it made me sick to think of the company that owns the chemo facility treating people like pre-abattoir cattle crammed into a crappy room together to share each other’s most miserable moments. I know damned well that company is making big bucks off these treatments and could easily afford to provide a much more pleasant environment.
So while the soothing radiation facility was a lovely example of positive surroundings, the chemotherapy facility felt like a makeshift emergency triage center, or a low-budget free clinic… except that they were making just as big a profit as the radiation clinic.
My ranting point: People should get what they pay for, and 3 overworked nurses (2 bitchy, 1 nice), and a room full of miserable, vomiting people shoved together for maximum profit is the healthcare equivalent of making someone pay designer prices for a cheap Walmart “Faded Glory” brand dress.
Because I have an active imagination and am a writer, I had to see the terrible room my mom described. So even though she wasn’t strong enough to get her last chemotherapy before I left as planned, she still had to go to the chemo room to get the white blood cell-boosting Neupogen shots, and I went along.
The dingy walls were painted the same sickly shade of Pepto-pink as the plastic puke bins. At one time there were fabric partitions to allow for patient privacy, but now so many ugly pleather recliners had been shoved into the room, they were blocking the sliding ceiling tracks from which the dignity-giving curtains might have hung.
There were 2 tiny, crummy television sets mounted from the ceiling at the front of the long, narrow room near what served as the nurse’s station, but really looked more like a cluttered area where unused things were stored. Like cleaning supplies. And humanity.
There were no other televisions anywhere else, so if you were a patient in any seat besides the first 2, you were out of luck. There was no wi-fi, so forget headphones and a laptop as escape from your dark reality. I told my mom I wanted to get her headphones and soothing nature sounds to mentally take her away from the bleakness, but she said she only had one session left; she could handle it.
It felt dirty, messy, disorganized, and was the opposite of sterile in that room. If despair took on an architectural form, it would look like the facility at which my mom had to get chemotherapy.
Dusty, faded, cheap statues of angels were also randomly placed above the cabinets in the front office area, which felt completely odd and off-putting in that sad scenario, rather than comforting. I visualized the angel figurines section of a post-hurricane Dollar Store shelf as I stared at them. I would bet 5 million dollars nobody has cleaned even 1 of those angels of filthy, er… mercy… since their initial placement.
I don’t blame the employees, as they’re working a tough job and have little control over the surroundings, but the fat business cat who owns that company ought to be ashamed of him/herself –and– forced to spend a month straight sitting in one of those filthy old lounge chairs every day, wallowing in the cold ambience of gloom and misery off which they’ve been lining their avaricious pockets.
Because chemo ain’t cheap, kids, and whoever is making money off the poor people in my mom’s treatment facility isn’t doing a damned thing to make it a less awful experience… and for that, they fucking suck.
(They’re totally sitting at a too-small children’s table in hell with Hitler and Anne Coulter. For entertainment, there will only be a puzzle picturing Donald Sterling surrounded by fuzzy kittens on the table, and it will be missing exactly 7 pieces. “We Built This City on Rock and Roll” rotated with “Love Shack” and “Girls Just Wanna Have Fun” will play overhead on a constant loop for eternity. I’m certain of this.)
Now to end my latest novella on a more positive note:
Because the mouth-sore-friendly “no added sugar” vanilla ice cream with the name “Sweet Freedom” stored in my parents’ freezer during my visit made the smooth, honeyed tones of Michael McDonald pop into my head every time I opened the door, I have had that song in my head for weeks now.
“Shine sweet freedom, shine your light on me…” has been repeating in my brain, and at some point I gave in and decided it’s the perfect theme song for my mom’s ordeal. Because I can’t wait for the healing light of sweet freedom from this painful journey to shine on her so she can finally move forward and get on with her life. Shine sweet freedom: shine your light on my mom. Oh, sweet freedom, carry her along. We’ll keep the spirit alive, on and on…*
The horrible radiation will finally end this week. If all goes well, the damned feeding tube will come out soon. My mom’s chemotherapy mouth sores will heal. And please, oh, please, let her sense of taste come back.
Considering what a rock she’s been throughout, and how quickly her body seems to heal between sessions, I will not be a bit surprised if my mom gets her sense of taste back, but if you’re putting in a word with your higher power or sending good juju her way, please consider aiming it at her taste buds, because that would be such a wonderful blessing.
And of course, dear God, no more cancer cells. Ever. Again.
Much love to you and yours, friends.
*In case you were wondering, yes, my husband and I will entertain you with dueling Michael McDonald imitations if challenged, goaded, inspired, and/or plied with enough alcohol. You’re welcome in advance.