Tag health

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. ❤

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

caravanofcomposition 3 Comments

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

Pennwriters 2022: Friends, Fun, and Kidney Stones

caravanofcomposition 9 Comments

Faithful readers know that the annual Pennwriters Conference in Pennsylvania is one of my yearly highlights. Back in 2020, local writers friends and I were stoked to travel to Lancaster, a six hour drive from Buffalo, to connect with other writer friends and laugh until our sides hurt. But, as you may have guessed, the conference turned virtual and instead of jumping on beds, we jumped onto a video chat after the Friday night Read & Critique and exchanged lockdown stories. Things were virtual again in 2021, and while I enjoyed our ridiculous group chats, I missed the sound of my friends’ laughter, missed seeing their smiles after a successful pitch session, missed the energy that comes from a room full of creative people.

So when the opportunity came up to travel to Lancaster for an in person conference this past weekend, I didn’t hesitate. My friend Joy and I were chosen to teach a class on healthy habits for busy writers, and my faithful travel buddy Adrienne (we attended the conference together in 2018) was game for the trip. Unfortunately for this busy writer, the timing wasn’t great. Both boys were scheduled for their first soccer tournament of the season, and my husband had to work all weekend. My parents had only just arrived back from Florida, and my mother-in-law was recovering from COVID. It was like the universe didn’t want me to go.

But I went anyway. I wanted to see my friends and hoped the positive energy would help get me back on track with my writing. The conference was great. I loved seeing people I hadn’t seen in person since 2019 – actually giving them a hug and sharing unfiltered laughter. Our class was a hit, I learned some new strategies, and I got positive feedback on my new novel beginning. On the last night, my friends and I enjoyed a wonderful dinner at my favorite Lancaster vegan restaurant, Root, followed by the social.

That’s where things began to go downhill. Terrible pain kept me awake for most of the night, and by 5am I knew something was very wrong. Adrienne and I decided to leave early, packed up our things, and headed home. While I considered stopping at an urgent care in Pennsylvania, I decided it made the most sense to get home where I would be near my family and Adrienne could go back to hers. Bless her heart, she drove the entire way while I moaned in the passenger seat. I was nauseous and in the worst pain I’ve ever experienced. (Up until that moment, the award for worst pain went to a ruptured ovarian cyst in 2014.) We arrived at the ER around 1:30, where I waited with hubby for several more hours before being seen. Finally, after a CT scan, the prognosis came as little shock to others in the room who had experienced it (hubby and the attending nurse): kidney stone.

Thankfully, I appear to be on the mend and will be seeing a specialist later today. I’ve been examining the reason behind it, (aside from my initial reaction which I’ll admit is irrational – that the universe was punishing me for doing something for myself) and have discovered many of the items in my diet may be problematic. I eat a plant-based diet and drink mostly water and tea, but things like raw spinach, nuts, and soy are high in oxalates, which can cause kidney stones. I’ve been feeling pretty down about it the last few days, as I think about cutting back on some of my favorite foods (I laughed with the nurse, telling him I will probably be the only person who insists they can’t possibly give up spinach!) and I hope to find a nutritionist who can help me navigate the next steps. In the meantime, I was thrilled to find out on Sunday night, after returning from my nine hour stay at the ER, that my poem Bruised (featured in Time won’t give me time) won first place in the In Other Words Contest. I wrote a few other poems during the weekend, including my first slam poem, and I plan to find some in person readings where I can share them in public. Maybe even submit to a magazine and see what happens. Despite the way things ended, I am happy I went to the conference and look forward to next year’s.

Unfortunately, while we were away, there was a horrendous tragedy in my hometown – a local grocery store was ambushed in a racist attack and several innocent people were killed and injured. We are the city of good neighbors, a place where people can count on the kindness of strangers to help dig them out of a snow bank, a place recognized all over for its die hard sports fans and namesake food. I am heartbroken by the events of this past weekend and don’t understand how someone can hold so much hate. My heart aches for the families of those lost, and for the members of our community as we struggle to move forward. Buffalo is strong and resilient and full of hope. We have come together to help each other, as a city of good neighbors must, and we will seek justice and peace.

Sending love to all, far and near. ❤

Girl vs. Mountain

caravanofcomposition 8 Comments

Everyone in my family skis. Everyone but me, that is. I’ve tried it a few times, but I simply don’t enjoy rushing out of control down a snowy mountainside. My husband took me skiing when we were first together. Before that day I’d only ever been on cross country skis and had no idea what to do. Up the chair lift we went. Off the chair lift I fell. We were supposed to go down one of the easy green circle runs, but it wasn’t open, so he took me to a medium difficulty blue square run. I completely panicked. He tried helping me down the mountain by holding my hands and skiing backwards, but ultimately I decided to take my skis off and walk down. I felt discouraged and embarrassed. Later that day his sister offered to take me back up the bunny hill and share some techniques, which, in retrospect, was where I should have started the day.

A few years later, when living on the West Coast, we went with some friends to a ski resort, and I tried again. It went better that time, but I still hated the feeling of being out of control. I spent most of the day in the resort sipping hot cocoa.

The family tries every winter to convince me to go again, but I am older and more stubborn now; I always say no. I go with them to the resort at least once a year, watch them ski, then retreat to the lounge area to read a book. This year my husband mentioned that our local resort has snowshoeing and skinning trails. Skinning is a term that refers to using skis with “skins” on the bottom to walk up a mountain. We recently bought one pair of Altai Hok skis (they are a bit shorter than traditional cross country skis and you can use them with regular boots) and one set of snowshoes and had been out once so far this season. I used the skis. I decided to try the new trail, having never hiked in snowshoes.

Wait, you’re saying. We’ve been here before. This very same mountain, 20 years ago. Perhaps not the best plan?

I may not ever want to downhill ski again, but I am still up for an adventure. And an adventure it was. I told my husband I was nervous to try it, especially the coming down part, to which he responded, You just walk up the mountain, walk across it, then walk back down. You’ve done it in the summer, how hard can it be? True, we hiked the mountain at another nearby ski resort during the off season, and oh yeah, it was crazy hard! This time there will be snow! I nearly chickened out, but the boys wanted to go skiing and the weather was perfect, so off we went. (Hubby had to work.)

I went to buy what they call an “alpine pass” ($10/day), and the woman at the counter must have thought I exuded confidence because she asked if I wanted a season pass. Oh no, just plan to be crazy for today only. She gave me a map with the highlighted trails and sent me on my way. At the bottom of the mountain I ran into a friend who asked if I was going to take the chair lift up. I said no (the pass wouldn’t allow it and I’m pretty sure I’d fall off trying to snowshoe at the top – besides, the point is to hike up and down the mountain, right?), they wished me luck, and off I went.

First thought: Yep, this is completely insane. I can’t even get these snowshoes tight enough! (The shoes were adjusted to my husband’s feet and it took me until nearly the top to figure out how to fully tighten them. Brilliant, Sandi. Really.)

Second thought (as I stared up at the skiers flying down the mountain): How the BLEEP am I going to do this?

Third thought: You are stronger than you give yourself credit for. Let’s go.

And up I went. I climbed up the area next to the bunny hill, then had to cross oncoming traffic to get to the next part of the mountain. There isn’t a designated snowshoe trail; you’re basically supposed to stay to the edge and try not to get run over. Yep. It’s as scary as it sounds.

Hiking in snow is hard. Hiking uphill is hard. Hiking uphill in snow is, well, let’s just say it felt like my heart and lungs were battling over who was going to explode first, while my legs were crying, WHY ARE YOU DOING THIS TO US? About halfway up I stopped to catch my breath, took off my hat and gloves and unzipped my jacket because holy cow it was hot. The ski patrol came by and asked if I was okay. Just taking a break, I said, waving my left snowshoe at them. Ah, I prefer skis, one of them said and sped away. About 3/4 of the way up I found a picnic table just off the trail and collapsed onto its bench. Thought about giving up, but knew I had to be close to the top, and kept pushing. When I finally made it, a guy said, You walked up here? I nodded. Impressive, he said.

Yeah, it was. Go me.

Once at the top, it’s a lovely walk along the edge of the property with gorgeous views. I passed by Holly, the run where I’d first tried downhill. Then I had to face my fear: walking down the mountain. The first part was gentle and easy (I’d decided to come up a blue and go down a green), but then it got steeper and I had to use the muscles in my legs to keep me stabilized. At one point, the trail merges with another and the only way down was to cross the main ski path. I checked for skiers, then made a break for it. When I reached the bottom of the hill, I collapsed into the snow.

A year ago, I could not have made it to the top of that mountain. But a few months ago I committed to daily exercise and have been getting stronger and more confident. We’ve been doing the winter hiking challenge (five trails done – three to go!) and staying focused on our health. I may be stubborn about some things, but I’m trying to keep an open mind and push the limits now and then. Will I ever downhill ski again? Probably not. Will I ever snowshoe up a mountain again? Maybe. Need to recover from this trip first.

The four faces of my journey, starting from top left:
3/4 way up – pretty much dying
at the top – HURRAY!
1/2 way down – sending pic to hubby for proof I was on the mountain
at the bottom – in need of water and a good stretch