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