Cancer sucks, but so do kidney stones and COVID

So I’m gearing up to start chemo on June 2. Since I’m not one to do things the easy way, 3 weeks after surgery I tested positive for COVID (thanks 2nd graders for that). Luckily I had just normal cold symptoms, but it still sucked. I was back to work that week (working from home), and talking to patients all day long is exhausting under normal circumstances, but trying to suppress a cough the whole day (sucking on cough drops) is super annoying. Once I was out of the 10-day quarantine period, I was like, ok, feeling better, on to chemo! But no. The universe had one more surprise for me in store……a kidney stone.

On Monday 5/23 I finished my work day at about 3:30pm. At precisely 3:36pm, I started to feel what I thought were bad menstrual cramps (albeit only on the left side). I quickly checked the app on my phone to see when my period was due (because otherwise I have no idea!), and it was supposed to be 12 days away. By the time I checked the app, the pain was in my left flank, in my lower back just above my hip. It was pretty intense, but I walked to the bus stop to meet my daughter. While standing there for the 3 minutes before the bus came, the pain progressed from a 6 to an 8, on a scale of 0-10. My mind immediately thought kidney stone, because that is a classic presentation. I had never had a kidney stone before. So as we walked (I hobbled) back home from the bus stop, my mind was racing….what else could cause this pain? I worried that it was something to do with my surgery, since that was in the left pelvic area, but the pain was higher than the area of surgery. Or, is my ovary twisted? Ovarian torsion is apparently extremely painful, because the ovary’s blood supply gets cut off with the twist. I didn’t know what it was, but the pain was getting worse and I knew I couldn’t just wait around for it to go away. I texted my husband to tell him I needed to go to the ER. I got in bed and curled up in the fetal position and cried (the first of many cries to come). He got home as soon as he could and packed an overnight bag for me just in case. He dropped me off at the ER (no visitors allowed in the waiting room), at the same hospital where I had my surgery. We could have gone to a local ER (not attached to a hospital), but I wanted all my records available to the doctors. I checked in, and cried as I signed the paperwork. I sat in the waiting room for a total of 4 hours, with my pain at a 10. I couldn’t sit still, kept shifting in the chair, crying quietly to myself. Anyone who knows me knows that I have a high pain tolerance and I hide my pain well. However, I think it was a culmination of all of the crap I’ve been through in the last few months, and then 10/10 pain on top of that. So some of the crying was a pity party for myself. Why me??? Why do I keep having bad luck??? I was glad that they had each waiting room seat partitioned off with frosted plexiglass, so less people could see how pathetic I looked. I was beyond caring at that point, though. I didn’t cry when I was diagnosed with rectal cancer. I didn’t cry when they told me I needed an ileostomy. I didn’t cry after my painful surgery. I didn’t cry when they told me I needed chemo. But this….whole ‘nother level.

After the 4-hour wait, they got me to a room in the ER. That’s when the waterworks really started. I cried and cried and cried. I was in soooooooo much pain. It was a 10, but then it got even worse! Didn’t think it was possible. It was definitely worse than labor pain. I mean, yeah, labor is bad, but you can breathe through the contractions and they END. This was a nonstop worst pain of my life, I imagined I was birthing a baby through my ureter. That’s what it felt like. The doctor came in and immediately saw my distress. He asked his questions, then left to order pain meds and a CT. I have a port implanted in my chest for chemo, and the nurses accessed it so I didn’t have to have an IV in my arm. All meds and fluids could be given through my port (her name is Portia). Portia to the rescue! Or so I thought. The nurse gave me Dilaudid, which is a strong opioid pain medicine. She came back a few minutes later to see how it helped, and it hadn’t helped AT ALL. So she gave me a second dose, and nothing changed.

Meanwhile, they took me for the CT. So I still hadn’t stopped crying, and I cried while in the CT scanner. I felt like such a baby for all the tears, but they weren’t letting up. It was still a 10/10 during the CT. When I got back to the ER, the nurse gave me some Toradol (a strong anti-inflammatory), and within minutes that helped the pain (FINALLY!). Of course, since I am THAT patient, I checked my CT results on my phone even before the doctor came in to discuss it. The CT did not see a stone. WTF?? There was dilation of the left renal pelvis (where the ureter comes out of the kidney) and dilation/inflammation of the left ureter, “likely secondary to a recently passed stone”. Ok. Where is the stone then? There was a large cyst on the ovary (measured at 4 cm). The doctor came in and was stumped. He thought my pain could have been caused by a kidney stone, or maybe a kidney infection. Except my urinalysis showed basically nothing except a few white blood cells. No microscopic blood (which you would expect with a kidney stone). I was still in quite a bit of pain, so he sent me for a pelvic ultrasound to rule out ovarian torsion, and to look at the cyst more closely.

During the ultrasound (which happened about 30 minutes after I received the Toradol), my flank pain was melting away. By the time I got back to the room, it was a 3/10. So much relief! The ultrasound did not show ovarian torsion, and the cyst (which was measured at 6 cm with ultrasound) appeared to be a peritoneal inclusion cyst surrounding my ovary, not an actual ovarian cyst. I’m not really sure if peritoneal inclusion cysts normally cause pain, but since it was on the left, and in the pelvis, it was just another red herring to have to consider. Apparently these cysts can form after surgery.

Well, since the ER doc was stumped, and he was worried about my cancer/recent surgery history, and the fact that I was starting chemo in 10 days, he decided to admit me for pain relief/observation. He was favoring pyelonephritis, a kidney infection. Of course they didn’t have a hospital room available, so I slept on and off on the ER stretcher that night. At about 3am, I was woken up by the admitting hospitalist. He heard my story, and was highly favoring kidney stone as the diagnosis, and I completely agreed with him at that point. I had a classic presentation, but it was weird that they didn’t see it on the CT scan. It definitely hadn’t passed by that time, evidenced by my 10/10 pain in the CT scanner. There is a possibility that it was hiding between the cuts of the CT images. The images “skip” small sections of the body as it scans. If the cuts are 5mm in size, and the stone is 3mm, it could have positioned itself just out of view. That would be my luck. My cancer has proven to be quite elusive to diagnose, as well as that pesky one positive lymph node. It seems my body is very modest and wants to keep stuff out of view. Jerk.

So I was admitted, and given antibiotics to cover a kidney infection. When I got to my room at 5:30am, I couldn’t fall back asleep right away. My pain was minimal (thank goodness!) but I was exhausted. I dozed on and off that morning. The rounding hospitalist came in around 2 pm, and was stumped as well. She said that given my upcoming chemo, they want to make sure to treat any infection, so she would err on the side of pyelonephritis and treat accordingly with antibiotics. But she was confused because it didn’t sound like pyelo…I didn’t feel sick prior to the pain, the pain was so sudden, I had no fever, urine was pretty clean. It’s weird to be a patient AND a medical provider, trying to work out your own differential diagnoses from a hospital bed. She was very nice and included me in the decision-making (I didn’t tell her I was a PA but it seemed she knew, probably from the admission note). She said it’s possible it could have been a stone that passed, since my pain was now minimal. It was about a 1 while I was talking to her. She agreed to discharge me, and asked if I wanted any pain meds to use at home, and I said no (I would regret that decision later).

My port, Portia, was connected to the IV fluids. When the nurse was readying me for discharge, she disconnected the IV line, and taped up the loose end to my skin. I was like “um, I’m not going home with this line sticking out of my chest….my chemo isn’t until late next week!”. She was insistent that my port should stay accessed, and made it sound like it would stay accessed all summer while going through chemo (even though infusions would be 3 weeks apart). I was adamant that she call the IV team and find out for sure. I couldn’t imagine going through life with tubes hanging out of my chest! The port is put in so chemo is easier, not harder! Anyway, the IV team confirmed that they would NOT let me go home with all that stuff, and they came to take it out. At least the floor nurse learned something that day. Happy to teach.

So I went in Monday night, and got discharged Tuesday evening. At discharge, my pain was starting up again, and was probably a 4 on the drive home. It got worse that night. I slept on the couch with a heating pad on my left back. Wednesday the pain fluctuated, anywhere from a 3 to a 7 that night. I cried again, thinking I would need to go back to the ER (which I absolutely didn’t want to do). I was taking ibuprofen and tylenol around the clock, and I’m not sure if it helped. I realized that even if I had said yes to the pain meds, she probably would have given my oxycodone, which likely wouldn’t have touched the pain (since Dilaudid didn’t). Thursday and Friday I worked at my desk, seeing patients, with a heating pad stuck up the back of my shirt. Even now (Saturday) I am sitting here with the heating pad. The heating pad seems to help a little, if for nothing else, just to distract my nerves from the sharp pain happening underneath.

I am 100% convinced it is a kidney stone. My urine culture came back as negative, no infection at all. All of the descriptions of kidney stones I’ve read on line, plus talking to a few friends who have been lucky enough to have had a kidney stone: my symptoms are classic. I get a crampy pain in my left flank every time I empty my bladder. Which makes me think the stone is at the bottom of the ureter, sitting at the edge of the bladder. The internet tells me it can take up to 6 weeks for a small kidney stone to pass!!! Oh my god. So I have potentially weeks more of this, in addition to starting chemo. I have an appointment with my PCP on Tuesday, so I will discuss it then with her. I hope it passes this weekend! I am drinking a ton of fluids (which I hate to do because it always makes me feel nauseous to have a lot of fluid in my stomach), and peeing a lot (which I hate to do because it hurts more).

So send me all your kidney-stone-please-pass-soon vibes. My next post will be about the start to my chemo journey…unless something else happens in the next 6 days…

A pic of the hooligan who gave me COVID (hint: it wasn’t me)

My port, the little bump above the incision. Note there are no IV lines coming out of it…

The chemo pills I will have to take…hazardous!

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The Summer of Me

Well, I had my surgery on 4/18/22. It has taken me two weeks to gather the physical and creative energy needed to write a blog post. I was in the hospital for 4 days. Oh. My. God. The first week was sooooo hard! I did not think it would be that painful. It was a laparoscopic low anterior resection with ileostomy. A few poke holes in my abdomen, and one horizontal 5-inch incision low down on the abdomen (same incision used for a C-section), to get the tumor out. And then my ileostomy in my upper abdomen on the right. The surgery apparently lasted for 7 hours, and wasn’t super straight-forward, but everything ended up fine despite the hurdles. When I got to my hospital room, the actual incisions didn’t seem to specifically hurt, but I felt like my whole belly had been run over by a bus. In addition to that, the CO2 gas that they pump in to your abdomen causes the worst shoulder pain after surgery! The shoulder pain was worse if I took a deep breath, so I tried not to, even though I knew I didn’t want post-op pneumonia! That shoulder pain lasted a good week. Luckily, week two was much more manageable. I walked to the bus stop to pick up my 2nd grader on day 8. It’s weird, but when I walk sometimes, my abdominal muscles tighten, and it feels just like Braxton Hicks contractions (don’t worry, I’m not pregnant!). Uncomfortable to say the least. That also seems to be getting better. I have to give myself a daily shot of a blood-thinner (for a month), so I don’t get a blood clot in my legs. It’s actually not that bad….my skin is numb from my belly button down to my lower incision, so I just use that area for the injections. It’s like giving an injection to someone else because I can’t feel it…weird. But my belly looks like Shelby’s arm in Steel Magnolias, like a battle zone of bruises from the injections.

With the magic of health records, and patients having access to them, I got a notification on my phone the day after surgery as I lay in my hospital bed. My surgical pathology was finalized. No evidence of residual cancer in the recto-sigmoid specimen (yay! — my tumor had actually already been removed endoscopically in March, because all of the biopsies pointed to it being benign), but one lymph node out of 28 was positive for cancer. Which may not seem like much, but even one lymph node buys you a ticket to chemo. Sigh. Thanks to the lymph node, my rectal cancer is officially stage 3a (or T2N1M0 for those of you who know TNM staging). I don’t know yet what kind of chemo or for how long I’ll need to do it, but I’ve been told it’s not the kind that makes you lose your hair, so that’s a good thing, right? I can continue to see my patients without having to answer questions about my own health (believe me, they would ask). So this was supposed to be the summer of me. And it will be: it will be all about me and my naps and my nausea and my neuropathy (a common side effect of this type of chemo). Maybe it won’t be all that bad? Only time will tell.

My ileostomy, named “Squirt”, has been relatively easy to take care of. He sometimes makes squirting noises, which the kids and I think is hilarious (although it wouldn’t be as funny if I was in a quiet room with someone who didn’t know I had one!). The main thing that bums me out about Squirt is that I have a restricted diet. However, it’s not what you think when you imagine a diet restriction. It is a low-fiber, low-residue diet. So basically, I have to avoid all that is healthy! I’m not supposed to have any raw fruits or vegetables, no salad, nothing high fiber. I can’t go through the summer without having fruits! The worry is that your ileostomy can get blocked, because high-fiber foods don’t digest as well. But because I’m me, I have already cheated. Good strawberries are starting to show up in the stores. So I have had strawberries the past few days (with Cool Whip of course!). I just cut each strawberry into about 20 pieces! I feel like I’m a baby learning how to eat. Don’t want to choke on anything! But I’m bummed that absolute no-no’s are grapes (I love grapes!) and corn (I wait all year for good corn on the cob!). The strawberries seemed to cause no issues, so I will continue to experiment with other fruits as time goes on. Squirt and I will be buddies until about a month after chemo is finished, so probably into the fall. The picture is 4 regular-sized strawberries, cut up so small I could hardly see them.

The following is a well-traveled post that has been circulating for several years on facebook and other platforms; it’s about cancer treatment. I don’t know who the author is, but it’s funny, accurate, and scary at the same time.

“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an ******* for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ***, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “**** this mountain, I never wanted to climb it in the first place.”

I am currently heading up the mountain, not knowing how big of a bear I’m going to need to help me. I’m hoping all I’ll need is a cute little black bear cub, but it could be a grizzly bear. I know I am super lucky and hopefully by the end of the year I will be done with cancer, something a lot of people only wish they could say. It could be so much worse (I’ve always been a glass-half-full kinda girl). I will post more once I know what my summer holds. In the meantime, if you are 45 or older, and haven’t had a colonscopy yet, GET SCREENED!

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