Category life

Hysterversary and other health updates

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One year ago this week I parted ways with my uterus, along with nine+ fibroids, two ovarian cysts, and a whole lot of pesky scar tissue. I have not missed any of it: A near lifetime of horrendous periods, being told my debilitating pain was “normal”, and struggling to find a healthcare provider who took me seriously. It was worth the ten weeks of recovery and a summer without swimming.

But then.

About eight weeks after my surgery, I was scheduled for a follow-up mammogram. My yearly mammogram in January showed something they wanted to keep an eye on, which sometimes happens as I am also blessed with dense breast tissue. Yay, me. I didn’t really want to spend the day at the clinic, getting the required mammogram followed inevitably by an ultrasound because it is way better at screening dense breasts. I didn’t want to go. But I did. Hours later, the technician finally released me and said to wait for the doctor to review my results. I was already late for work and asked if they could just follow up with a phone call/letter (generally the protocol if everything looks normal), and she said no, you really need to talk to the doctor.

Warning sign number one.

I waited, irritated. Went into the consultation room where they told me the original area they were watching looked the same, but there was a new spot which warranted a follow-up biopsy. I didn’t really look at the screen, didn’t really want to know anything at that point, just when do I need to come back here and waste another morning?

The day after my ten week hysterectomy recovery mark, I went in for the biopsy. We have these days at work called One and Done, where students can go through the entire process of admission and registration in one day. They are exhausting days but they start at 10 and I figured I could squeeze the appointment in and not miss any more work (I used up all my sick leave after the surgery). So off I went, telling myself it was no big deal. There’s no history of cancer in my family. My mom’s had a few breast biopsies and her results were always benign.

During the procedure, the doctor tried to make small talk and asked about my kids. They had just left for the World Scout Jamboree in South Korea. Everything was fine so far, (everything would quickly stop being fine) but I missed them. I remember the doctor saying it would be a “slight pinch” as they injected the lidocaine. I remember saying, “slight pinch???” incredulously, followed by the doctor giving me more lidocaine. I remember the horrendous sound the instrument makes as it snips and extracts tissue. I remember looking at the ultrasound screen and worrying slightly that the thing they were sampling looked like an alien blob, not the cute little round cysts I usually see.

Warning sign number two.

Within the next forty-eight hours, my world went to shit. The boys arrived at camp and began to live the nightmare that was the World Scout Jamboree. My youngest tested positive for covid and was sent into isolation in some undisclosed location – we lost almost all contact with him. The testing clinic told me I would get results by the end of the week; my gynecologist called the next night and left a message to call as soon as I could.

Warning sign number three.

It was a Wednesday night. I was still at work and had gone to the bathroom to fuss at my bandages. Breast biopsies are painful and cause terrible bruising. When I got back to my desk and checked my voicemail, I tried not to panic. I called her back, but the office was closed for the day. I had a therapy appointment right after work and unloaded all of my anxiety – about the test results, my boys, the complete lack of control I had over everything.

The next morning, a little past 8 am, the phone call came. I think in that moment I already knew what she would say, but if there were any remaining slivers of hope, they disappeared the minute I heard my doctor’s voice.

Sandi. I have some bad news. You have breast cancer.

I sat down. Tried to take notes. Tried to process her words. Did you have your ovaries removed during the hysterectomy? she asked. No, I wanted to go through menopause naturally. Well, they may need to come out.

Is it weird I remember that detail more than anything else she said? Maybe. Ironic? Oh yeah. Not because I ended up going back in to remove them (I tested negative for gene mutations and for all of the hormone receptors – so ovaries got to stay), but because the chemotherapy I would soon endure rendered them completely useless. In a single year I would lose – in one way or another – all of the textbook parts that made me female. And coming to terms with that has not been easy. (Pro tip: don’t ever tell someone going through chemotherapy that it’s, “just hair” or joke that a breast cancer patient gets a “free boob job”. Just don’t.)

I am now four months out from chemotherapy and three months out from surgery. Today I had a follow up with my plastic surgeon, tomorrow with my surgical oncologist, and next week with my medical oncologist. It has been a journey, one that is never truly over. When I look back on this past year I’m not entirely sure how I made it through. On our wipe-off calendar by the garage door I wrote, “One day at a time ❤” because that was all I could handle. I started a private blog during treatment to update family and friends. It is raw, unfiltered, and it kept me afloat. During the initial stages of my diagnosis I also finished my fourth novel, which releases this summer. Writing always brings me peace, and I hope someday I can use it to help others.

Final thoughts as my hysterversary approaches: don’t neglect your health. Ever. Take care of your body and listen for the warning signs. Be proactive and don’t give up if you feel like no one is taking you seriously. Life knocks you off balance sometimes, but what matters is that you get up and keep moving forward. Be kind. You never know what someone is going through, and it truly does make a difference. ❤

I sent my children to hell.

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My sons were born in South Korea. They flew to the United States at 7 and 13 months, and we always hoped they would be able to return one day to visit their homeland. When we found out the World Scout Jamboree would be held in South Korea in 2023, and that the boys would be the perfect ages (the event is for scouts 14-17; P is 17 and J is 14), they were thrilled. We spent two years saving and planning, and the last several months attending biweekly meetings and an in-person campout in Albany. Resident foodie J couldn’t wait to sample Korean street food, and we celebrated his twelfth KTA day (Korea-to-America – the day he arrived in the US) on July 7 with Korean BBQ. Eagle scout P had just spent three weeks in Europe with American Music Abroad and was still a bit jet-lagged but excited for his next adventure. The boys looked forward to meeting new people, trading patches, and experiencing other cultures. It would be a once in a lifetime trip.

Last Thursday, we drove to NYC and dropped the boys off at JFK airport. I hugged them goodbye, then began to tear up. My stomach was in knots, but I passed it off as being nervous for them to travel so far away. If I had trusted my gut, I would have grabbed them up and spent the weekend touring NYC’s Korea town instead. But we had sunk over 12 thousand dollars into their adventure, so I walked away.

The boys made it safely to Korea, but P quickly realized he had forgotten his international credit card, and neither boy had enough cash to purchase street food or souvenirs on their preliminary tour. Oh, if only that had been the worst of their troubles. They were due to arrive at the Jamboree site on August 1, but it was delayed due to a lack of set up. The boys spent the night in a nearby Army base, on lockdown with no wifi, eating cold MREs. Around a thousand scouts and leaders slept on cots in a crowded gymnasium like refugees or hurricane survivors. The following day they arrived on site to still no tents and were forced to sleep on cardboard boxes on the hard ground. P said he slept sitting at a table.

That morning (Korea is 13 hours ahead of us), I received word from P that his brother was suffering from heat exhaustion and had gone to medical. The medical liaison assured me he was fine, that he wasn’t drinking enough water and they were handling it. The temperature in Korea was in the 90s with oppressive humidity. I began to worry, but tried to stay positive. Their scout leader called around 7 pm with news that J was not improving, and running a fever of 103. They were going to test him for Covid. We received no further information that night, until P finally texted to say the test came back positive and J would need to be quarantined for five days.

I had no idea where he was going. No idea the sort of medical treatment he would receive. No idea how he was doing.

Around 1pm on August 4 (2am Korean time), the US contingent announced they would be pulling out of the jamboree. Hours earlier, the UK contingent pulled out and was sending its scouts to hotels in Seoul. Our scouts would be returning to the Army base. P had been texting me about how bad things had gotten. They finally had all of their tents and supplies, but the bathrooms were filthy and overflowing, the showers ice cold and lacking privacy. The heat was horrendous and he could hear ambulances going off constantly. Someone said the medics ran out of IV fluid. Thousands of kids had fallen ill.

The next morning there was an emergency parent meeting. US scouts would have a final day at the Jamboree and then travel back to the Army base. Scouts and parents were a mix of furious and relieved, but all were disappointed in how things had panned out. The Korean government spent millions of dollars to try and fix the problem, insisting the Jamboree continue as planned despite the deplorable conditions. But the UK, US, and Singapore contingents have left. Conditions have improved, but the unbearable heat continues. And now a typhoon is headed straight for Korea.

P has arrived safely at the base (I can only assume as there is no wifi and I have not heard from him since yesterday, when he begged to fly home – an option that would require the boys to either travel alone or us to foot the bill for both them and two adults), and J remains in quarantine somewhere near the jamboree. We have not heard from him in two days. The last time we spoke he sounded extremely depressed, despite his leader telling us last night that he was in “good spirits”. He has missed the entire jamboree. No patch trading, no mingling with other cultures, nothing. And now he will miss the first day of activities at the base as he is required to finish out his final day of quarantine.

Everyone in the troop is some level of sick, P told me early on. Some were tested, some were not. Two boys were positive and have been kept in isolation. I get that they needed to be safe and cautious, but my child has been completely alone in a foreign country for five days. He is depressed. He is lonely. He is scared. I have gotten zero communication from any medical staff regarding his health or well-being. I am stuck on the other side of the world, completely helpless, knowing that I sent my children into this hell.

Instead of a once in a lifetime experience, I gave them a nightmare.

Why you should trust psychics (and listen to your body)

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content warning: medical issues and infertility

For the second time in my life, the psychic was right. The first time happened in the late days of August, 1998. Recent college grad, student loans hovering, remaining days to land a teaching job ticking away. Desperate for a solution, I went to a local psychic, who – I am not making this up – pulled out the phone book and suggested I contact a local school for students with learning disabilities. I had never heard of it, but I took a chance and gave them a call. No teaching jobs this late, the woman on the other end told me, but we do have an opening for a teaching assistant if you’d like to come in for an interview?

One week later I started my first salaried job. I loved it there and would have stayed if not for the whole marrying a naval officer thing. But that’s a whole other story.

Fast-forward to August, 2022. Hubby and I venture out to the annual Steampunk festival (our first time going, but definitely not our last – so much fun!) and are called by sweet smelling incense to the tarot card tent. There we meet two psychics and decide to have our cards read. I go first. It doesn’t start well – something about my kids that doesn’t align with them at all – but then she flips a card, looks at me and says, you have health issues? Sure, yeah, I mean, who doesn’t? I try to play it off with a not really, but she isn’t buying it. She flips another card. Another look, this one more intense. Great. If you don’t handle your health issues, she says, they will handle you.

Ha. What do psychics know?

A fair amount, apparently.

Two weeks ago today, an amazing surgeon removed my uterus, which weighed nearly 6 times more than a normal uterus and contained 9 fibroids – the largest of which was about the size of a navel orange – two ovarian cysts, tubes, cervix, and endometrial tissue that was basically growing everywhere, including on my bladder. (This, my darling youngest son who complained when we had to stop every two hours on our road trip, is why I needed to PEE. ALL. THE. TIME.) Needless to say, the psychic was right. The past several months have been a struggle. Debilitating pain, anemia, and oh yeah, that pesky bathroom problem (which was leading to dehydration and kidney issues). I suffered from shortness of breath due to the orange-sized fibroid pushing up against my diaphragm, which made exercise basically impossible. My swollen belly prevented my from wearing regular pants and sent me into an emotional tailspin. I was never able to conceive but now I looked four months pregnant. Not funny, universe.

[Side note: I decided to name the largest fibroid “Bad Brad” and the smaller ones his “associates”. Upon reading my pathology report I immediately texted my sister to tell her that Brad had way more associates than originally thought (first diagnosis in November showed three total fibroids) and that there were also several “interns” too small to be picked up on the ultrasound.]

After years of hopping from gynecologist to gynecologist, hoping to find one who actually listened, I was referred to the above mentioned surgeon who changed my life for the better. I am in the early stages of recovery, which is a lot of bed rest (translation – a whole lot of binge watching and book reading) and mini walks around the neighborhood. It’s incredibly lonely, but I am thankful to feel a little better each day, thankful for my husband and kids, for friends and family who have stopped by with food or flowers, checked in via text or sent get well wishes, for my big sister who is coming in to take me to my post-op appointment and distract me for a few days. And very thankful for my feline nurses, who have sat by my side faithfully and kept me company day and night. (Seneca is going to be a mess when I return to work next month!)

Never take your health for granted, and do not ignore pain. It is not normal. It is not noble to grin and bear it, as I have for years. The surgeon told my husband that she didn’t know how I was walking around. If you don’t feel listened to, or validated, find another doctor. I am so, so grateful for mine, but I wish I had found her sooner, before things got this bad. Before my health handled me.

Oh, and listen to the psychics. Call it intuition, magic, whatever you want. Two out of two – that’s pretty good odds.

My nurse kitty, Seneca, consoling me during the early days of recovery

Twenty twenty-two: A review

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Oldest gestured at the wall calendar this morning and asked, “HOW?” As in, How are we at the end of 2022 already? Good question, kiddo. How indeed. This year certainly had its ups and downs, and I owe my faithful readers an apology for only cranking out three blog posts (including this one). Blogs are dead; our attention spans can only handle 10 second Insta reels. But the lack of word flow has caused a backup, and like a clogged spillway I fear I may overflow and spew sewage everywhere.

So here we are. The final day of the year. Ironically, The Sundays are currently singing “Here’s Where the Story Ends” in my noise canceling headphones, which remain my favorite purchase of all time. I refuse to believe the story ends here. However, we are about to turn the page, so before we do, let’s reflect on the year, shall we?

Some Highlights:
Watched my son perform on stage and earn his Eagle scout
Was able to be by my dad’s side in the days following his heart surgery (Also: my dad survived heart surgery!)
Fostered an adorable kitty named Bellatrix
Crossed an item off my bucket list when I hiked three miles through cold mist to witness an erupting volcano
Played with octopuses (yes, that is the correct plural)
Released my fourth verse novel, CAUGHT IN THE HAZE
Saw my Pennwriter friends in person after two years of virtual conferences
Got to spend time with my brother and his family
Watched my big sister marry the love of her life
Took my boys to their favorite summer camp
Started a new job
Floated in Lake Ontario
Completed both a winter and summer hiking challenge with my favorite hiking partner
Missed the Cure vs Smiths dance party but then got a do-over in the summer and danced my little heart out
Rode boats, toured castles, played pinball, tubed down a snow covered hill

There have been some low points for sure, like nearly losing my beloved kitty from a blocked ureter, and passing a kidney stone on the six hour drive back from the Pennwriters conference (we are both laying off the spinach now). I had to make the difficult decision to leave a job I’d done for eight years, a job with wonderful co-workers who thankfully have kept in touch (and one who followed me to my new job). My health has been up and down, and surgery may be in my future. Oh, and the wound of this one is still fresh: Our city endured a major storm over Christmas weekend, and literally buried our holiday in snow. I love my immediate family, but I am definitely over being trapped in the house with them.

What’s next?
I am not typically the sort of person who makes resolutions. This is mostly because I am not the sort of person who follows through. There are so few knowns in the world from day to day, let alone year to year. My oldest will turn 17 and apply to college (or decide to take a gap year as long as he doesn’t call it a gap year because I really don’t like that term). My youngest will start high school. Both will log innumerable hours of video game play. My cats will continue to be incredibly sweet and then incredibly violent at the slightest noise (you should see my scratch scars). There will be adventures. There will be laughter. There will be heartache. I will read books, drown out the world in my favorite headphones, spend more time than I should worrying about things I can’t control. Like what happens next.

2022. What can I say? You flew past me. Sometimes a nice breeze that cooled my face. Sometimes a car screeching through a puddle and soaking me to my skin. You were a slight improvement to your previous sister-years, but I’m still raw from their wounds. As I close this post, “Survivin'” by Bastille is playing. I’m gonna be fine, I’m gonna be fine… I think I’ll be fine.

Happy New Year, friends. Be well. ❤

Kilauea Volcano