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

happiness

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.

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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.

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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.

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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.

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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.

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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.

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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.)

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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.*

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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.

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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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About T.L. Crider

Mom. Musician. Professional Worryist. Disappointed Idealist. INFJ. Scorpio with 5 planets in Scorpio. I really miss bread.
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