I’m Tired of Naming Bands

lostgirl

***

Hi, friends.

After creating eleventy-bazillion different blogs, both free and purchased, it finally occurred to me that I am once again doing that thing all musicians loathe: I am naming bands.

Blogs are the new bands.

I’ll explain.

Once upon a time, I was in many different rock bands, and one of the most annoying things one must do upon flocking together with other musicians to play shows in public is choose a band name.

This means that not only will the group of you have to think up something cool, you will all have to agree that it is the best name.

Then, you will search online, find out some other group of musicians is already using your clever name idea, and be totally bummed out.

Repeat this process again and again until you finally settle on something kind of dumb that none of you really loves, but at least you don’t all hate it.

I’ve never really liked the name of any of my bands.

I had a child, stopped playing music live, and started writing to fill the “I need a creative outlet or I’ll go completely insane” hole in my new life.

And I’ve been scattering my writing across the Internet for years under various blog names, each an attempt to finally own that elusive-yet-perfect band name I could never grasp.

After many years of thinking up a new band name every time the talented musicians kind enough to make my songs sound better would leave or change, I finally called the playing of the songs I’d written The Tawni Freeland Four because I was so incredibly tired of trying to be clever.

It probably looked like a total ego move from the outside, but I can assure you, as an entirely insecure chick from way back, it was a purely exhaustion-based decision.

I was so tired of trying to think up original band names. So I said, “The Tawni Freeland Four. DONE.”

The site at which I will be writing is my new The Tawni Freeland Four, except I got married, so my name is Tawni Crider, and I feel like nobody takes a ‘Tawni’ seriously in this world unless she’s on a pole and taking their money, so I’m going to go ahead and keep it simple.

T. L. Crider.com. DONE.

From now on, all I write, from flash fiction, to simpering, whiny Dear Diary blog entries, to attempts at adult articles, will all be located at: http://tlcrider.com/

Thanks for reading, if you’re so inclined.

xoxo.

 

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Fitness Faux Pas: 5 Ways You’re Doing the Gym Wrong

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Exercise can help burn off excess ADHD energy, as well as working out anxiety – but some gym patrons could use a few good manner reminders. Read about 5 common gym etiquette mistakes on my other website, The Anxiety Mom Dot Com:

http://theanxietymom.com/2015/03/03/fitness-faux-pas-5-ways-youre-doing-the-gym-wrong/

Posted in Uncategorized

Our Bodies, Our Self-Loathing

I’ve been hyper-focusing on losing weight lately. I recently realized after a yearly wellness exam that the evil doctor’s office scale number was 20 pounds higher this year than the last. I’m 5’9″, so this is perhaps like a shorter woman gaining 10 or 15 pounds, but still. Not cool.

Furious at myself for not noticing sooner, I immediately leapt into action, both psychologically and literally. I eliminated all carbs except non-starchy vegetables from my diet. I only allowed myself 2 high-protein shakes for breakfast and lunch, then a tiny toddler-sized, high-protein dinner. I added 30 more minutes of cardio to the 30 minutes I normally do every other day. I started doing cardio every day, in addition to the weight machine strength training I already do 4 days a week for 30-40 minutes.

My knees are fucking killing me.

(I thought I’d be cute and run throughout my 20s, despite the fact that both parents have bad knees. I was warned I’d regret it, and they were right. I can’t even do a squat anymore without it sounding like someone cracking their knuckles. The cardio bike doesn’t hurt at all… but damn, the treadmill is a bitch.)

Because I dropped below 800 calories per day, I lost 7 pounds in 9 days, and then, also because I dropped below 800 calories per day, my metabolism shut down and I plateaued at the same weight for days.

This infuriated me, and started a war between my mind and body, and soon I was eating nothing but liquid protein, determined to win. I became scared to eat solid food. That scale was coming the next morning, and that number had better drop, damn it.

I do this. I become scared of food and just stop eating. This is a lifelong pattern for me. I’ve starved and over-exercised myself down to 115 pounds, and didn’t get my period for nearly a year because my body fat was so low. And I still thought I needed to lose weight.

Never thin enough. Never good enough. Never enough.

I don’t lack willpower — quite the opposite, actually. You could drop a box of doughnuts in front of me right now and I wouldn’t even think about it because they’re not an option. The same quality that makes me an annoyingly stubborn human also gives me a will of steel that has allowed me to travel through the cruel moments of life unbroken. It’s a blessing and a curse.

In short: You won’t break me. But I might.

My husband had to talk me back into eating after a few days of probably less than 500 calories because I was furious at my body for not doing what I wanted it to do. He told me, “You’ve shut down your metabolism and put your body into starvation mode because you’re not eating enough. You know how this works.”

And then I cried like a big baby because hungry people are emotional people, and admitted he was absolutely right.

So I agreed to add a handful of nuts, a string cheese, an apple, popcorn, or other such small, healthy snacks into my daily allowance of “2 protein drinks and one tiny meal” to keep my metabolism from shutting down. We also agreed that the daily weigh-ins were obsessive and potentially mentally harmful, so I’m only weighing-in on Fridays.

Sigh.

Trying to lose weight is like doing really hard math all the time. I hate having to think about exercise and food so much. Those people who say, “All you have to do to lose weight is get a little exercise and control your portions!” can suck it. They’re grossly oversimplifying what is for many people — who have damaged their metabolisms and have food/weight/body image issues — an incredibly complex and stressful process. And it’s insensitive and rude to say “It’s so easy for me!” to people who want more than anything in the world to have what you have, and to feel good about themselves. It’s mean. Stop it.

ReallyTinaFey (2)

I just told you I’m having trouble losing my pregnancy weight, you replied that you wore your pre-pregnancy jeans home from the hospital, and I’m not allowed to punch you? I call shenanigans.

The Losing Weight is Easy! folks are also not taking into account that everyone has a different hormone blend, thyroid/metabolism, age, bone structure, genetics, etcetera. And the fact that pregnancy can completely change the physiological system of a woman has been confirmed to me by many doctors.

One doctor told me, “Yes, most women are dealing with a completely different metabolism and body post-pregnancy. Sometimes it’s a good change, like they’ll stop having the asthma they had before. But usually, unfortunately, it’s negative.” He told me this because I was having my blood drawn to see if my thyroid isn’t functioning properly, because I’ve never had trouble losing weight in my life… until I gave birth. Whole different ballgame, and I don’t know any of the new rules. It fucking sucks. My thyroid is fine, which is great. But I wanted a reason. My thyroid sucking ass would have given me a reason for the way I can’t lose weight as easily as I used to lose it.

Because I like reasons. I like answers. And I fucking hate feeling chubby. I don’t feel good about myself and it affects every other aspect of my life, no matter how hard I try to talk myself out of it. I can tell myself all the enlightened things; “You’re more than just a number!” and, “Your body size doesn’t determine your worth as a human!” But all societal media and advertising influences say otherwise, and they got me. I’m brainwashed. You win, fat-shaming, chubby-mocking American culture. I am at the top of my acceptable BMI range, and I hate myself for it. Are you happy?

I’ve also been trying to figure out why I gained weight this year, and again, my wise husband helped me realize that I’ve been depressed. I’ve been depressed because my mom was diagnosed with stage 4 cancer last April, and that was a scary and stressful ride for the whole family, because we love her, and worry. And when anything like cancer slaps you in the face with mortality and the random unfairness and unpredictability of life — it fucks you up psychologically, whether you realize it or not.

I don’t keep cookies in the house, or candy, I don’t like potato chips (they taste like old, cold grease to me), and find soda pop/soft drinks to be gross (mmmm… fizzy chemicals), so I’m actually a somewhat healthful eater. Even the protein shakes I’m “eating” now are a healthy blend of pure vegetable (pea) protein combined with flaxseed meal, chia seeds, and a few handfuls of spinach. (I tried the pre-packaged Atkins shakes and they burned my mouth. I’m pretty sure they’re made from nuclear waste, liquefied desperation, and Satan’s piss.)

But I did lose myself in multiple Netflix binge-watching sessions and definitely had a sedentary last few months, curled on the couch in a blanket, 3 days past a shower, crying over other people’s fake film problems. I’m sure this contributed to the weight gain.

PizzaSnarfingCat

Maybe some comforting, yet entirely unnecessary carbs slipped in there, too. (I miss you, pizza! Call me!)

Depression’s a bitch, amirite? But I feel like I’ve turned a corner, and I’m going to keep working on getting my ass AND my mental outlook  in better shape.

Hope you’re well, friends.

xoxo.

Posted in anorexia, body dysmorphic disorder, body image, cats eating pizza, depression, self-loathing, unrealistic expectations, weight loss | Tagged , , , , , , ,

Where Is My Mind?

I haven’t written in a long, long time. Not via blog, not personally, not at all. I’m writing today because I’m trying to get back into the habit — to exercise the muscle, if you will. Apologies if it’s boring. (What else should I be? All apologies.)

For a long time, I was making good money writing many articles a week for a native advertising company that eventually “went in a different direction” and slowly eliminated its stable of freelance writers.

There were originally 40+ of us I’d estimate, then they got rid of all but around 20-ish. Then there were the top 10. And finally, 3 of us remained; two excellent male writers and little old me. I’m pretty sure they only kept me on to write the fitness and beauty articles. I assume that because I have low self-esteem and never give myself enough credit. (It’s a living.)

I think I stopped writing because the slow disappearance of that job coincided with my mom’s stage 4 cancer diagnosis, which kicked our entire family in the ass. I got out of the writing habit, and oh yeah, depending on fate–that fickle bitch–I might have been losing my mother. My sisters and I dealt with the stress and worry in similar ways. I became completely discombobulated emotionally and physically. My shrink kicked up my daily Xanax dose to help control the added anxiety.

Because I was getting ready to fly to Phoenix to help my mom, and my son was about to be out of school for the summer, I quit my gym to save money. Once my mom’s chemotherapy and radiation were done, and my son was back in school, I rejoined the gym, but the reading and Netflix-binging for escape combined with lack of regular exercise had led to weight gain. One of my sisters and I discussed how we’d let our diets go to crap during our mom’s cancer ordeal, and had both been stress-eating. So that didn’t help either, because I do not have the metabolism to handle stress-eating anymore. Bad idea jeans, middle-aged lady.

I knew I’d gained a few pounds, but a few days ago, I had my yearly girl parts wellness exam, and the doctor’s scale revealed a number to me unlike any number I’ve ever seen. It wasn’t 666, but we’ll call it the Number of the Beast anyhow, because that number can go straight to hell. Seriously. I’m 5’9″ so it’s never a “cute” number, but ho-leeeeeee shit… that’s the most I’ve ever weighed. I died a little inside when I saw it.

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I weigh HOW MUCH? Shit. Kill me. Kill me now.

Because of my height, pre-pregnancy, I never had a weight gain I couldn’t handle. If I’d “wintered well” and gained a few pounds, I’d reduce meal portions, get more exercise, and be back to my fighting weight before the end of spring, no big deal. Then I had a gigantic baby, 2 abdominal surgeries (Core strength? What’s that?), and the typical metabolism drop that occurs in one’s mid-30s… all within a few years. I don’t even know what to do with this new body. It feels like someone dropped the former me into a chubby stranger, wished me “Good luck with that,” and disappeared.

So I sat in the little room on the exam table, with my pants off, and a “so the doctor and I don’t have to make eye contact while he stares into the depths of my vagina” pink paper shield draped across my lap, while I stared out the window in shock. I’ve had body issues my whole life, and even when I weighed 115 and didn’t get my period for a year because I didn’t have enough body fat, I still thought I needed to lose weight. (Body dysmorphic disorder? Yes, please. I’ll have that with a side of over-exercising and anorexia, thankyouverymuch.) Seeing the highest number of my life completely did my head in. I was freaking the fuck out.

And something snapped inside me. I’m not a whiner, I’m a fixer. I mean, I throw a fit and complain and vent like anyone else, but I don’t live there… I start looking for solutions. I asked myself, “So you hate this. What are you going to DO about it?”

High protein/low carb is the only dietary change that’s ever helped me lose weight, so I decided to have a high-protein shake for breakfast and lunch, a light dinner with protein and vegetables for fiber, and to workout a minimum of 1 hour per day. And no more alcohol, period. I only drink red wine anymore, but still… that’s empty liquid calories I don’t need.

This will be my new regimen, and it’s going to work, damn it. I ain’t goin’ out like this. I don’t feel good like this, and I’m tired of hating my body.

I also talked to my doctor about getting off birth control pills because they make me immediately gain 15 pounds without any lifestyle changes. My hormones suck. I only take them to prevent ovarian cysts, so we set up a sonogram for 2 months from now to see if my remaining ovary (I’ve had an abdominal hysterectomy/left oophorectomy) forms cysts while I get off the pills. Fingers crossed I stay cyst-free, lose weight, and can remain off the birth control pills.

And I’m going to weigh myself every morning for accountability. I lost a pound yesterday, according to this morning’s scale reading. Today I’ve had only liquid protein drinks, did 30 minutes on the cardio bike and 30 minutes of weight machines at the gym, then came home and did 30 minutes on the treadmill. I am determined to fix this.

So that’s my latest news that’s not really news if you know me. I still hate my body. I’m still anxious a lot of the time. But I’m trying to get myself to a healthier, happier place. I’m trying to focus on the good and remain grateful and all that hippie stuff that we mock but is actually truly helpful.

And my cat is snoring as she sleeps next to me in her window bed while I type, which is pretty adorable. So I’ve got that going for me, which is nice.

I hope all is adorable and happy in your world, friends.

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Shine Sweet Freedom: My Mom’s Latest Cancer Battle Update

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.

Xoxo.

*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.

Posted in Uncategorized | 2 Comments

Update About My Mom’s Cancer: Trying to Stay Positive

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I have been meaning to write an update about my mom’s cancer battle, but I just haven’t felt like writing lately. I apologize.

I finished the 19 articles assigned to me for April by the Internet company for which I write, but delivered them much more slowly than usual, because I just couldn’t get my head in the “writing place,” or focus on much of anything, really.

When a loved one is in the middle of a serious health crisis, it’s hard care about writing fitness, swimsuit, and hairstyle trend articles. It just is. None of the trivialities of life matter when someone you love is at risk, so I couldn’t take my job as seriously as I usually do. I can’t take anything seriously right now, and until my mom is cancer-free, I doubt I will.

And that’s saying a lot, because I’m a generally raging perfectionist, no matter what the task. I refold all the towels my husband folds when he does laundry, for example, because he doesn’t do it the way I like. So I normally take the articles I ghost write for assorted business websites/blogs (i.e. native advertising) very seriously, because I live by the motto that “any job worth doing is worth doing well.”

I think the problem is that I don’t feel like doing any jobs when my mom’s current job is fighting for her life. All other jobs seem pointless by comparison. The news of her cancer kind of gut-punched the motivation out of me, and I’m still trying to recover. And I can’t be there during her entire radiation and chemotherapy treatment, which is killing me, but I have a little boy who needs his momma.

My momma needs help and my son needs his momma. I’m completely torn, and I feel so helpless and frustrated here in Oklahoma, unable to help.

*****

One of my sisters went out there to help during the beginning of treatment, because in addition to my mom starting chemotherapy and 5 days of radiation per week, my stepdad had surgery to correct 2 hernias. They needed extra help, and bless my sister, she flew out there and was amazing.

My other sister, the one who lives in Arizona like my parents, has been helping the most, obviously, because she lives there, and is also amazing.

So I will be going out for a few weeks to try to help my parents, and give the local sister a break soon. I hate leaving my son, but know he will be okay without me for a little while. His grandparents (my husband’s folks) are going to help out while I’m gone, and they’re great with him, so I’m extremely grateful for their support and love. He’ll be in good hands. She reassured herself neurotically.

*****

To recap the cancer-related information, my mom developed an itchy all-over body rash, got an MRI because her lymph nodes were enlarged, and had what was supposed to be a lymph node biopsy surgery during which they told her they would check for cancer in the O.R. and then decide whether or not to remove the lymph nodes.

Instead, the doctor saw that the largest lymph node was 10 times the normal size and removed it without a biopsy.

He didn’t remove the other swollen lymph node, nor did the doctor biopsy it, as promised.

My mom has a severe tape allergy (that I inherited), about which she informed the doctors and nurses, and she was fitted with a bright red allergy bracelet that said “tape” and “band-aids” because she and I both develop an itchy, blistery rash from all adhesives. Putting a bandage on or taping gauze over a wound creates a skin condition for us that is far worse than the incision, and should be skipped.

So of course all of the nurses and doctors ignored her allergy bracelet and taped her eyes shut during the surgery, as well as taping her neck incision shut, rather than using stitches or staples.

She developed blood blisters and open sores all around her eyes where the tape was, and her neck incision swelled red and itchy from the tape holding it shut. Her face is permanently scarred from this.

I’m sure she doesn’t want me to show you her whole face, as she didn’t even go out in public because she looked like a zombie, but I cropped one of her eyes out of a picture she emailed me to show you what a tape allergy ignored during surgery looks like. Oh, and keep in mind that it blistered and got WORSE after this shot:

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My mom waited for the doctors to call and let her know if there was cancer in the lymph node, to no avail. When she went to have them look at her bleeding eyes and angry red neck incision, they told her the lymph node removed was full of squamous cell carcinoma cells, i.e. cancer.

They had known this for nearly a week, by the way, but nobody bothered to call her to tell her she had cancer, as she sat at home bleeding from the eyes, anxiously waiting for the Cancer Answer. Wow.

*****

When squamous cell carcinoma cells are found in the lymph nodes, this means there is definitely a tumor somewhere else in the body.

The lymph nodes are the gatekeepers of the body, catching infection and cancerous cells to prevent spreading to important organs, so her lymph nodes were doing their job well.

But now, doctors had to figure out where those shitty little cancer cells were originally forming to eliminate the main cause (the tumor) and prevent it from metastasizing (spreading further), if possible.

To do this, a PET scan is done, and the patient is injected with dyed glucose, because cancer cells love sugar and will pull in the dyed glucose at a higher rate than normal cells, making the cancer cells darker and more easily identifiable on the scan.

*****

My mom got the PET scan… and they found nothing.

At first, I was really happy about this news, because I foolishly thought it meant the cancer had been contained to her lymph nodes. I actually thought that maybe she just had lymph node cancer, they take them out, and boom. All better.

But I was foolish to think it might be so easy. Because what my mom has is called Squamous Cell Carcinoma of Unknown Primary, which means there definitely IS a “primary” cause of the cancer—a tumor—somewhere in her body. They just couldn’t find it, damn it.

*****

Because of the particular lymph nodes involved (neck), they assume the cancer is somewhere above the shoulders… neck, head, sinuses, etc. (If the underarm lymph nodes had been swollen/cancerous, they’d be looking for breast or lung cancer, for example.)

So somewhere in my mom’s head, there is an evil tumor lurking, and unfortunately, because they can’t more accurately target that little fucker via PET scan, the only treatment to kill it for sure is a blanket radiation treatment of her entire neck and head area, and a few rounds of chemotherapy.

So yes, my mom’s PET scan didn’t reveal Stage 4 of a certain cancer, but because it didn’t show the doctors from where the cancer is coming, she’s having to get a very intense chemo/radiation treatment anyway.

And this situation is rare, happening in only 3% of cases involving this type of cancer, so that’s beyond infuriating. She tried one last-ditch attempt at finding the tumor – a whole body MRI scan with contrast dye – but again, it showed nothing.

Had the doctor who promised to biopsy both lymph nodes in the operating room while she was under actually done what he promised, found the cancer immediately, and removed both lymph nodes, her radiation treatment could have been drastically reduced, lessening the chances for negative side-effects. Thanks again, doc. Great job.

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*****

My mom was fitted with a molded-for-her-face and highly claustrophobic mask to hold her head still during the radiation treatments, which she will undergo 36 times, 5 days a week. She is nearly past her third week of radiation treatments and already feeling the negative effects.

Her throat is hurting, and her teeth hurt. She told me she may lose her teeth as a side-effect of the radiation. She also told me that if they over-radiate a particular artery, she can have a stroke. And other such horrifying side-effects.

We’re trying to focus on her being one of the people in the “minor side effects” category post-treatment, so if you’re sending prayers or good vibes her way, that’d be a lovely thing to ask for.

*****

The doctors said patients are usually no longer able to swallow after 3 weeks of throat radiation, so she had surgery to install a feeding tube into her stomach, as recommended. They do this early so it will have time to heal, because if they wait until later, the chemotherapy-induced vomiting can pop the feeding tube’s stitches.

As of today, she can still swallow, but her salivary glands have been so radiated they are no longer working, and she has to take sips of water with every tiny bite of food to get it to go down.

She recently cleared out all sugary foods in the house because cancer cells feed on sugar, and is trying to make every bite of food nutritious and healing. She’s also drinking lots of water to help clear the toxins from her system, and my sister has been trying to think of foods/recipes to get inflammation-reducing Omega-3s into Mom to try to lessen the effects of the radiation. (Flaxseed meal works really well for me, for example, so I suggested adding flaxseed oil to smoothies, since Mom can’t swallow large food.)

*****

The first round of chemotherapy sucked out loud, and my poor mom had to sit for 6 hours while it slowly dripped into her veins, along with preemptive anti-nausea medication.

When I spoke to her on the phone, she said the horrible feeling hit her almost exactly at the 36-hour-mark, just as my friend Julie (who successfully defeated breast cancer) had mentioned. She was amazed by how accurate that was, and once again appreciated all the great advice my friend gave her. (I have great friends.)

When I asked her how she felt when it hit her, I was expecting to hear that it felt like the flu or a norovirus, but my mom said, “It felt like I was dying.”

Oh. And, fuck. I hate that I can’t be there for the entire treatment. Hate it.*

*****

So my mom is one-third of the way through her radiation, and is marking off the days. It’s very common for people who undergo this particular type of radiation to be unable to swallow after the treatment, but there is therapy to help her re-learn to swallow, and she mentioned a surgical procedure that can widen the throat and help, too. My mom is a very strong woman, and I’m secretly putting my money on her getting through this and still being able to swallow, but that may be my hopeful daughter naiveté speaking. We’ll see.

She considered abandoning the treatment to try a minimal approach and enjoy a few years of quality rather than deal with the potential side effects, but when the doctor told her that option would be more like 2-6 months of life versus a 90% chance of being cancer-free with potential side effects, she decided to keep fighting the good fight. I’m so proud of her for her bravery, and have no doubt my mom is going to come out on the other side of this battle the victor.

Someone with whom my husband works told him about her friend who had the exact same cancer/diagnosis/treatment, had the feeding tube, had to relearn to swallow at the end of treatment, and her only side effects are that her salivary glands were destroyed, so she has to keep a water bottle with her at all times, and drink water with every bite of food. She has to sneeze gently because otherwise she gets a nosebleed because her sinuses were radiation-damaged as well. But that’s it. She is also 11 years cancer-free! This story gave me hope that my mom will also successfully fight this off and have minimal side-effects, too.

So we’re all trying to stay positive for my mom, but also for ourselves, because we’re no good to her if we’re all a bunch of emotional messes.

I gave myself 2 weeks to lose my emotional shit, and I haven’t cried since. My inner drill instructor is back in charge, because my mom needs her Strong Daughter right now, damn it, and that’s what she’s gonna get.

I am eager to get out to Arizona to help in any way possible, and will be leaving soon. I took May off from my job because I am currently worthless to them (my mom is fighting cancer, so while I truly appreciate the opportunity to make money via writing, I just can’t write about spray tans right now… I’m sorry) and want to focus on my mother.

*****

My mom is exhausted from daily radiation, and while she appreciates the kind thoughts and love behind the phone calls, she’s simply too tired to take them right now, and her throat hurts, so if you’re a friend or family member reading this and you want give some love, I would suggest sending her a care package instead. I’ve sent 2 so far, and I hope they’ve cheered her up.

She also can’t have visitors because she’s immunosuppressed, and she can’t go in public because of risk of illness, and because of people who don’t vaccinate their children (thanks Jenny McCarthy, you fucking idiot), so she’s housebound until the chemotherapy is over. Flowers, cards, or anything happy and positive you’d like to send her way would be greatly appreciated, but phone chats are getting too hard for her at this point.

Much love to everyone reading this.

Xoxo.

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*****

*I want to be with my mom for the entire treatment, but my son is presently being bullied so much at school and on the bus that I actually took photographs of his bruises and the scab under his eye from where the big kid pushed him back and off of the swing at recess the other day, causing him to flip over backwards multiple times, land on the mulch which cut his face open, and hurt his knee so badly it was still bright red and bruised a week later.

They sent him to the nurse’s office for an ice pack. Nobody bothered to call or even email me.

He got off the bus limping, and limped for 2 days afterward, but the knee seems to be okay. They couldn’t find the perpetrator because my son was crying so hard and recess was over, (he’s usually a “get up and back to playing” type when he falls down, so I know he was really hurt), and my son doesn’t know the kid, so the bully got away with it. No teachers saw what happened.

There have been other incidences, including my son being repeatedly, viciously stabbed in the thigh with a jagged, broken off pencil so badly his leg is Dalmatian-spotted with bruises where the torn-up skin and scratches were. (I took pictures of those, too.)

Violence towards my kid is absolutely unacceptable. No child should ever have to suffer physical harm to receive an education. If my son is ever hurt to the point of a medical attention being required, I will be pressing assault and battery changes, expecting the bully’s parents to pay all medical bills, and getting litigious with both the parents of the bully and the school. So I’m starting an “injury documentation trail” now, as my son has been bullied for his atypical neurology since kindergarten and I’m DONE.

Craptastic, negligent parents: If you can’t manage to teach your children how to treat others kindly, or at the very least to not behave like aggressive little monsters, I’m making you pay one way or another. There will be legal and/or financial consequences. I’ve had enough.

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And I’m so sick of schools talking about how bullying will no longer be tolerated, and then watching the same cruel, bullying shit happen, same as always. Everybody’s talking the talk, and nobody in the public school system is walking the walk. So the rough last month for my child is why I’m having a hard time leaving him, and not already in Arizona with my mom.

Short version: Can everybody just stop SUCKING for a few weeks, please, and can we maybe teach our kids to be nice? Can I just have one fucking trip to go help my mom through chemo and radiation and not have to worry while I’m gone that my poor kid is being emotionally and physically beaten down by the children to whom you haven’t bothered to teach the Golden Rule, empathy, or basic human decency?

Please?

Related: Thank God for Xanax.

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Posted in Uncategorized

“Why Not Me?”

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My mom first noticed something was wrong because she’d developed an all-over itchy body rash.

This is not uncommon in our family; I once developed all-over itchy hives from a Tetracycline allergy, and Prednisone took care of it.

But when my mom’s dermatologist put her on Prednisone, it did nothing. She still had the all-over itchiness – and now her neck area lymph nodes were swollen, especially on one side.

The doctor told her the enlarged lymph nodes combined with the itchy body rash could mean Non-Hodgkin’s lymphoma, and that she’d need to have the lymph nodes biopsied, and possibly removed.

The doctor promised to check both lymph nodes for cancer while she was under anesthesia so they could decide to remove or not without requiring two surgeries.

My mother and I share a severe allergy to medical tape/bandage adhesive as well, so she told the doctor and staff about this pre-surgery. She repeatedly emphasized this allergy. They put the bright red allergy bracelet around her wrist pre-surgery, with “tape” and “band-aids” written on it.

(The last time a doctor ignored my tape allergy, I had a basal cell carcinoma removal that required 14 stitches, and the nurse dressed the wound with a large patch of gauze and tape. I didn’t get the taped-on gauze off until I got home, and I had an itchy, blistery rash in a square around my incision that took longer to heal and bothered me more than the incision.)

When my mom had the lymph node surgery, not only did they ignore the bright red allergy bracelet and tape her eyes shut, they also taped her neck incision shut, rather than using stitches or staples, as I’ve had for different procedures (that all healed great for me).

So my poor mom was under anesthesia and unable to say, “Hey! I’m allergic to tape! Don’t tape my eyes shut, please, and definitely don’t tape my neck incision shut!” Which is exactly why patients wear allergy bracelets.

She woke up, groggy, not knowing what had happened, and got home before she realized that despite her noted allergy to adhesives, they’d pretty much taped everything they could possibly tape on her face and neck area.

She had broken out in a blistering red rash around and under her eyes, and was now bleeding down her face. She looks horrifying and miserable in the pictures she emailed me, with puffy blisters and bloody sores ringing her pretty green eyes as if she’s been 3rd degree burned, with red swelling around the still-taped incision in her neck.

That’s right. Even though she was having a violent reaction to the now-removed eye tape, she still had tape holding the neck wound shut. Because what is she going to do… pull off the damned tape and stitch the incision up the way the doctor SHOULD have?

My mom looks like a zombie in these pictures, or like someone’s who’s had acid tossed into their eyes. Blisters. Swelling. Redness. Skin peeling off. Facial scarring. It was traumatic, painful, and infuriating to see these pictures of my sweet mom, and her completely pointless and avoidable extra discomfort.

Because remember that itch all-over rash we discussed earlier? Yeah. She was still dealing with that, too.

So thanks for the additional and unnecessary health issues, inept medical idiots who ignored my mom’s allergy bracelet while she was knocked out and helpless. Way to take care of your patient!

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Oh, and the biopsy that was supposed to be performed while she was under anesthesia to check for cancer? That never happened either. One of the lymph nodes was so huge, the doctor removed it without testing, and apparently no biopsy/testing was done on the other enlarged lymph node, as was discussed prior to surgery.

Wow.

But wait. It gets better.

So my mom is waiting for the lab results to come back on the lymph node that was removed, as in, “Cancer or not?” which is kind of a big deal. It’s a shitty question we all dread after every biopsy, and as parents, we have the added stress of walking bleakly down the mental path to the dark place in our heads where we imagine our children growing up without us. It’s a horrible place to psychologically live, and everyone knows it. For this reason, “benign” will always be the most beautiful word in the world as far as I’m concerned.

My mom waited a week in this bad place of worry and fear. And she’s waiting. And she’s waiting. It’s over a week now. And she’s assuming they’ll call her if it’s bad news. Or good. But really, just waiting for that call. For the news. For the answer. Cancer or not. Cancer or not. Cancer or not.

But the call never came. The only reason she found out about her cancer was because she had a follow-up appointment, and when she got there, they dropped the “Oh, hey! Turns out you do have cancer!” mind-bomb on her. They’d been sitting on the information for at least 4 days, by the way.

This means that for nearly a week, while my mom (and her family who loves her) sat waiting for the either wonderful or terrifying answer to the “Cancer or not?” question, this doctor’s office full of people apparently didn’t even have one person empathetic enough to give half a fuck and call my mom with her lab results and lymph node pathology.

Again… wow.

The doctor told her she had metastatic squamous cell carcinoma lymph node cancer, non-keratinizing type, which means that she definitely has cancer somewhere in her body, because these types of cells always come from a tumor. The lymph nodes, as you probably know, serve as the gatekeepers of the body, catching infection and bad cells before they can get into nearby organs and other important parts of the body.

(For example, when I developed shingles all over my left upper face and scalp, my left neck lymph node swelled, like I had a walnut under my left ear. My doctor told me to relax; that’s just your immune system protecting the rest of you from what’s happening to your face. And he was right – as the shingles healed, the lymph node swelling went away. Great, calming doctor. And thank you, left lymph node.)

So my mom’s awesome little lymph node was swollen with bad stuff it was keeping away from the rest of her, which is good. It was doing its job, and well, because it was swollen to over 10 times the usual size.

But the new goal, obviously, is to find the tumor from which the squamous cells are coming, and get that nasty fucker out of her body.

A PET scan was the next step, and again, The World’s Most Incompetent Doctor’s Office didn’t disappoint. They told my mom to go to their oncologist for her PET scan. So she set up the appointment with their oncology buddy’s office, as directed by the brilliant medical team who taped shut the eyes and neck incision of a woman wearing a tape allergy bracelet during surgery.

Luckily, the oncologist’s office was more on-the-ball than the doctor who’d referred my mom to them, and they called her before the appointment to let her know there was no point in coming in until she had a PET scan for the oncologist. Huh?

Turns out, they don’t do PET scans there. It would have been nice if the referring doctor had shared this with my mom. But you know… there’s no sense of urgency when you find out you have cancer, right? In fact, I think that’s what most people recommend once you find out you have cancer; try to take as long as possible to get answers, and start treatment as late as you possibly can. No biggie. Just relax. It’s only cancer.

The oncologist office’s receptionist offered to get my mom a PET scan appointment with their referral buddies in a week, and after begging for anything sooner without success, my mom got pissed. But we get “Minnesota pissed” in my family of Lutheran Wisconsin dairy farming descendants, so she politely told the lady that would be great. (We have smiling while thinking, “Fuck you and the fucking horse you rode in on,” down to an art form. It’s pretty impressive, really.)

My mom then got off the phone and immediately scheduled a PET scan appointment with a different office my stepfather had used in the past. Oh, and they were able to fit her in THE NEXT DAY, rather than making her agonize for a week about where the cancer in her body might be living.

When she called them back to let them know this, the receptionist was passive-aggressively bitchy about whether or not my mom’s insurance would cover the scan at the other place (they will) and quite nonplussed. Too bad.

Mom went ahead and set up an appointment with that office’s oncologist for the day after the PET scan to discuss the results, and then set up another appointment with a completely different oncologist for a second opinion of the PET scan results for the day after that.

I was so proud of my mom for putting her foot down and taking a stand against the medical ineptitude and lack of compassion that has plagued her throughout this journey thus far.

No, I will not wait a week for a PET scan, she decided. No, I will not trust the opinion of the oncologist to whom I was referred by a doctor who didn’t do the cancer biopsies during my surgery as promised, whose entire medical staff ignored my tape allergy bracelet, and then couldn’t be bothered to call me to tell me the lymph node results came back positive for cancer for nearly a week. NO MORE BULLSHIT.

Needless to say, my mom is no longer seeing that doctor, or anyone associated with or recommended by that office.

*****

Unfortunately, the PET scan couldn’t find the tumor from whence the metastatic squamous carcinoma cells are coming, which apparently means it is smaller and hiding somewhere, most likely in her sinus/head/neck region.

I had been adding a nightly dose of 2 glasses of red wine (any more is dangerous for me with my anti-anxiety meds) to my usual low daily dose of Xanax throughout this process out of worry for my mom, but upon hearing the tumor was small, I became optimistic. This was premature, unfortunately.

Because “tumor too small to find” sounds like a good thing, until you find out that the usual treatment for this situation is a massive blanket-radiation of her entire face and neck area, which she told me can lead to bad side effects like losing one’s sense of taste and ability to swallow, potentially necessitating a feeding tube, and can possibly cause a stroke if a certain aorta is over-radiated, etc.

Fuck.

She will also be doing chemotherapy, which as we all know, is no picnic.

Again… fuck.

I hate this so much for her. I’m not trying to make my mom’s cancer about me, I swear, I’m just so angry about how poorly she’s been treated by the doctors in the Glendale, Arizona area in which she lives, and worried about how she’s handling it. Because I don’t even have the damned cancer and I’m walking around with a knotted stomach and a tension-strained back out of concern for her, so I can’t even imagine where her head is right now. And I’m so mad that this entirely-too-young woman is dealing with such a major health issue. She just threw her own mother’s 90th surprise birthday party, for chrissakes.

*****

I am officially back on the nightly “dose” of 2 glasses of red wine. And daytime Xanax. I took last night off drinking because I worry about overtaxing my liver, and I’m going to talk to my doctor about upping my daily dose of four .5 mg Xanax pills to five per day until my mom has successfully fought this off so I can skip the wine, because I don’t want to become this woman:

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I only have one glass of wine a night, Doctor, I promise.”

My mom is also on Xanax for the stress for the first time in her life, and now knows what her daughter with the Generalized Anxiety and Panic Disorder has been raving about for the last year since I first sought psychological help. She can’t believe how much it calms her down, yet without making her feel weird or trippy.

I was scared to try it at first because I don’t like feeling out of control (not only can I not handle smoking pot, I can’t even take decongestants), but Xanax makes you feel like you, just calmer. Like the calmest version of yourself. The “non-fight-or-flight” version of yourself. Amazing.

*****

I also received part of my “inheritance” in the mail the other day, which ruined me a little.

My mom has always collected antique pink glass – gorgeous, delicately designed pieces, such as cream and sugar bowls, candy dishes, bowls with cherries and cherry blossoms etched in them. She once asked me if I would like them to be willed to me when she passes someday, and I said yes, because I love all things colored glass.

So when I received two large boxes full of the pink glass I’m not supposed to receive for at least 30 more years, I didn’t know what it was. My son was in the living room engrossed in Minecraft on Xbox 360 when I brought the boxes in from the porch, set them up on the kitchen table, opened them, and pulled out the first piece.

It was wrapped in multiple layers of bubble wrap and tissue (all pieces arrived intact), and it was a little pink creamer pitcher to be placed at a fancy tea party with the little sugar and coffee cups that I opened later.

When it hit me that the boxes contained what my mom considers her “last effects,” I quickly walked to another room so my son wouldn’t be frightened, held my mother’s pretty pink glass in my lap, and thought to myself, “I don’t want my mom’s stuff… I want my mom.” And I sobbed like a bereft child, in the silent way parents are forced to weep when their kids are in the house.

*****

She’s only 63. Cancer is a motherfucking bitch, and I hate it. When my mom started crying on the phone while talking to me about it, she apologized, and I told her, “No, don’t apologize, Mom. You have cancer and you get to feel sorry for yourself if you want,” because I am very emotional, and get really annoyed when people don’t let other people own their emotions.

(If you want to cry in front of me, I won’t think you’re weak; I’ll think you’re courageous enough to express your emotions, and I don’t allow people to apologize for that. We’re all entitled to our emotions. All emotions are valid. The end.)

But do you know what my brave mom said? She said, “I don’t feel like ‘Why me?’ about the cancer. I feel like ‘Why not me?’ Because cancer isn’t fair.”

Jesus.

*****

She and my stepdad, who is being a great advocate, complete with binders for information and note-taking during appointments, are currently in the process of getting a third opinion about cancer treatment options, and all she has asked of me (and anyone else who cares) is to pray for her.

So if you feel like putting in a good word for my mom with your Higher Power, if you have one, or could send her some healing vibes, positive energy, white light, good juju, or anything your brain might manifest to help her through this tough time, I would really appreciate it.

She’s an incredibly strong lady, and I have no doubt she’ll kick the cancer’s ass and survive this, but I would really love prayers and good thoughts for minimal radiation side-effects in particular, please, if you’re feeling like sharing some love.

Thank you so much, friends.
Xoxo.

roses are red

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