When your neck starts swelling and you pull up WebMD, it tells you about viruses, bacterial infections and swollen lymph nodes. Likely a skin or tooth infection. Maybe it’s Mumps? A little, reassuring footnote mentions in rare cases it could be related to cancer, tuberculosis or thyroid problems.
But it’s probably an infection.
The unwritten, cardinal rule of WebMD is don’t diagnose yourself with cancer.
However, as your neck continues to swell, painlessly, a little voice inside asks: “Wouldn’t an infection be tender? Painful?”
So, when the global pandemic forcing billions into quarantine starts to ease up, you do the adult thing, dawn a face mask and go take care of your skin infection. Or whatever.
When a doctor says “you look pretty mump-y to me,” you feel reassured you don’t have the cancer you read affects roughly 0.062 percent of the US population annually. Even if the symptoms seem the closest match and catching a virus seems unlikely while in steadfast isolation.
However, when an ultrasound report is delivered to your doctor at 11:30 PM on a Friday with “significant suspicion of cancer” and you hear from them five minutes later… Deep down you know it’s the likely answer.
Between COVID-19 overwhelming radiology labs and an already weak biopsy system, it takes 10 excruciating days to get in for an urgent STAT biopsy and to receive the results.
What I Know
Last week I got biopsy results positive for Nodular Sclerosis Classic Hodgkin’s Lymphoma (NScHL) — the most common form of Hodgkin’s. In short, cells in part of my immune system are growing abnormally and increasingly limiting my body’s ability to heal and fight infections.
I’m generally in good spirits, I’m not in pain and I’m hopeful.
While my results favor this diagnosis and it’s definitely Hodgkin’s, it’s still possible I have another subtype (there are four), however the treatments are largely the same. It’s possible I’ll need to do an additional, slightly more invasive diagnostic excision biopsy.
NScHL is a relatively well-understood cancer, often extremely treatable, with overwhelmingly good remission, cure and survival rates.
As reassuring as that is, it’s still scary, shitty and the road to recovery is a difficult path. As hopeful as I am, part of me knows I’ve already managed to be in a pretty unlikely group.
The irony of chemotherapy, particularly the ABVD cocktail I’m most likely to take, is it puts you at risk for developing secondary cancers, as well as heart and lung issues. Generally most issues would appear within the first couple years following successful treatment, but my lifetime risk for secondary cancers will be elevated.
Some lifestyle changes are going to be key to lowering those risks.
What’s The Plan?
My plan is in active development.
Right now, I don’t know how much the cancer has spread. I have a PET-CT scan tomorrow that should help me get staged. So far, the waiting for answers has been the hardest part.
I’m currently getting lots of tests done, additional opinions and researching a strange new world.
Next week I get a port put in my chest for delivering IV-based chemotherapy starting in the coming weeks. How much and how long I’ll be doing chemo will be determined by my PET-CT results.
Again, based on those and ongoing PET-CT results, I may or may not need radiation therapy as well. Historically Hodgkin’s was treated with radiation, but increasingly the disease is treated only with chemotherapy and radiation only when necessary.
Perhaps one of the most challenging parts is the isolation requirements. Right now, while in-treatment and while I recover, I need to reduce human contact as much as possible. For the foreseeable future I’m on full lockdown.
While some degree of this is normal in cancer treatment, it’s exponentially compounded by the COVID-19 pandemic, which Arizona is doing a terrible job of containing. Particularly during chemo, when my lungs will already be weakened and immune system compromised, I need to make every effort to minimize risk of exposure. That means no human contact apart from my husband and necessary medical appointments. No stores, no physically-distanced hangouts, no unnecessary risks.
Another part of my plan is to generally step back from social media (if you’re laughing, yes, that’s basically my default state). There’s going to be enough toxic things going into my body. I’m going to be turning off notifications, perhaps uninstalling apps on my devices. I may check in here or there, but tags or DMs won’t be checked often. Professionally, I’m going to be stepping back from WordPress community events and contributing to focus on internal work at Endurance — I greatly look forward to diving back in.
Finally, I’ll be sharing periodic updates here as I go through treatment. If/when we connect, it’s okay to ask questions, any questions, but I’m predicting I’ll mostly want to talk about other things.
What I Need
As I’ve begun reaching out to people, common questions have been “Is there anything I can do?” or “Is there anything you need?” I haven’t been entirely sure how to answer this. The listening helps, the act of asking helps, but I’ve realized there are some things I really do need.
I’m a fairly private person, in particular with what I share online. Sharing this is far from my first instinct and comfort zone. But I feel strongly that it’s important to share due to the current global pandemic.
More than anything, I need people to take COVID-19 seriously.
I’m not asking that everyone isolate to the degree I need to. But I do ask everyone wear a mask in public — if I’m getting a chest port installed, poison injected into me and potentially getting irradiated, the inconvenience of wearing a mask and the heartbreaking-but-essential act of physical distancing both pale in comparison.
Obviously it’s not just about me. It’s about the essential workers, in particular BIPOC, putting their lives on-the-line for everyone’s needs and comforts. It’s about the depleted medical workers and their concerned families. It’s about immunocompromised people — at every age — who are isolating with the same fear and frustration everyone else is, but elevated. And yes, it’s also about the economic damage of not wearing a mask and indulging in non-essential comforts like dining in restaurants, going to a gym and throwing summer parties.
In the end, you’re not just taking personal risks and making personal decisions — you’re just not. You’re electing to take risks on behalf of others — loved ones, strangers and everyone in-between — and making decisions that can have life-long and life-threatening ramifications.
What I need more than supportive messages, more than cards or care packages, more than anything else, is for people take that responsibility seriously and do the uncomfortable work of having loving conversations with friends and loved ones who aren’t.
Some other things I need:
- I can’t be physically present for protests to advocate for long-overdue societal changes for Black folx, immigrants and other persecuted minorities. I’m doing what I can through phone calls, petitions, education and having conversations, but under normal circumstances, I’d be shoulder-to-shoulder in the streets. If this is a risk you are able and comfortable taking, this is one risk worth taking and a significant way you can support me.
- Help me bank some distractions with media recommendations! I’m less-interested in movies and TV, but I’d love book, audiobook/podcast and long-form journalism recs.
- Cute animal photos, videos and GIFs are quite welcome! I particularly like golden retrievers, shiba inus, foxes and raccoons.
- Chemo tips & tricks.
- Positive vibes, prayers, thoughts.. whatever your thing are welcome.
- Go to the doctor, even if you’re afraid of COVID-19. Putting off medical care can be catastrophic. Be careful, but don’t let fear prevent you from taking care of your health.
In general, please feel free to reach out (and also don’t feel like you need to)! I’d prefer emails and texts over phone calls at the moment. I can’t promise a timely reply, but please know it’s not a bother and it means a lot.
I’ll share more when I know more. If you’re interested you can subscribe to updates via email below.
Love to you and yours,