The Taming of an Angry Colon

So, I had my ileostomy reversal surgery on November 14. The surgery went well, no surprises. The round hole in my abdomen where my small bowel poked out had been about 2 inches in diameter. The surgeon hooked my small bowel back together again, and closed the hole down deep by the muscle, but left the rest of the wound half-open, using a “purse-string” suture around it. Imagine the drawstring on a trash bag, exactly like that. However, it was not cinched all the way closed, so it totally looked like a volcano crater. The surgeon assured me this monstrous abomination on my belly would heal very well and I would have a minimal scar. I used to work in surgery, and I was not convinced. We always made it a point to close every incision in a nice straight line for the best cosmetic result. The edges of my wound were irregular and bumpy, and it was sticking out. However, I had no option but to trust him (not that I really care what my scars look like). I am now 5 weeks out from surgery, and I have to admit he was right! I currently have about a 1/2 inch little line of a scar, a little puckered but flattening out more every day. It’s amazing what the body can do. Speaking of the body….

The main issue during recovery from this type of surgery is that your colon, which has not been used for a while (usually about 3 months), now has to wake up and do its job. Mine was laid off for seven long months, and apparently, was quite upset about being told to go back to work. My colon had been enjoying an extended vacation, laying around the pool, drinking margaritas. And suddenly, the boss comes in and yells “get to work!” Well, that makes for a disgruntled employee, let me tell you.

I was prepared for this, I wore depends, knowing there might be times when I had little warning about needing to get to the bathroom. Let’s just say for the two weeks it was a game called “ten second warning”. And this game was played at about 5 minute intervals. I couldn’t leave the house, and frankly, I hung out in the chair in my bedroom because it was about 5 steps away from the master bathroom. Even then, there were accidents (thank goodness for the depends). And the pain! My colon was rebelling in ways I had never experienced. I will spare you the details, they weren’t pretty. I was not aware that a colon could be THAT angry with its owner. I was eating small meals, low fiber, and still my colon misbehaved. I started taking Immodium a few days after getting home from the hospital. It is an anti-diarrheal medication that slows down peristalsis. I was taking 1-4 of them per day, depending how I was feeling. Then after about 2 weeks of hell, my colon was like “ok, I guess I have to make a living somehow”. We agreed that I will take an Immodium once in the morning, and once at bedtime, no exceptions, even if I feel a little constipated. In doing so, and with our new work contract agreed upon, the past few weeks have been a lot more predictable. My colon and I are on much better terms. I can go places, and not really have to worry about where the bathroom is (although if I’m in an unfamiliar place I will mentally note the location of the bathroom before getting too far). I now get to decide when I will go to the bathroom, when it is convenient for me. Sometimes if I go once, I will need to go 3-4 more times in the next 30-60 minutes, so I have consider the timing. But for the most part, knock on wood, it has been going much better than I expected at this stage. They say it takes about a year after surgery to get to your new normal. Many people have lots of issues after ileostomy reversal and have to learn to cope; this is called Low Anterior Resection Syndrome, or LARS. One thing that is in my favor is that I never had radiation to my rectum, which the majority of rectal cancer patients will have during the course of their treatment. Radiation can make tissue stiffer, less adaptable. The way I was diagnosed was kind of backward, so radiation would not have been helpful in my situation. I am grateful for that. I may not have a rectum or sigmoid colon, but the tissue that I do have is healthy, un-radiated tissue. I am hopeful that I will have a relatively normal quality of life and rarely have to think about this annoying chapter in my life. I am looking forward to starting to run again and my goal is to do at least one 5k race in 2023.

As I say goodbye to 2022, the Year of Crap (pun intended), I look ahead to the rest of my life, cancer-free and feeling good. If you are 45 or older and haven’t already done so, make a pledge to yourself to get a screening colonoscopy in 2023. Colorectal cancer can happen to anyone, even with no symptoms, and the prevalence is becoming much higher in the recent years. It is treatable if caught early. If it is caught later, it can be fatal. Do it for yourself and those you love. To my colorectal cancer buddies, we went through this together and we are coming out the other side (or other end, if you will). I will always be there for you!

This is going to be the last post dedicated to my cancer journey (at least I hope so!). I will revert this blog back to a documentation of my running adventures in the coming months. I hope you all have a happy and healthy new year!

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The Saga Continues…

The last time I posted was July 21. A lot has happened since then. This is my sob story.

Shortly thereafter, I traveled to Maine with my 2 daughters to visit family for a week. I was about 1.5 weeks into my third chemo cycle, so I was beginning to feel better, and felt pretty good the whole week (minus the last day, which we will get to). We go every year, but this year was especially exciting (and imperative that I be there no matter what) because my 4 sisters and I were meeting our long-lost older sister for the first time, whom we only found out about last year. It was a great reunion, and she will forever be a part of our family now (whether you like it or not, Lisa 😉 ). The week was filled with other fun-filled activities as well, like going to the beach, climbing on the rocks at The Lobster Shack (a definite must if you ever find yourself anywhere near Cape Elizabeth, Maine), visiting the lighthouse where I got married 21 years ago, and going to an amusement/water park. Like I said, I felt pretty good during all these activities.

The 6 sisters, with our newest member Lisa (in the grey sweater)

Then, on July 30, the last day of vacation, I went out for lunch with one of my sisters. After you exit the restaurant, you have to go up a flight of stairs to get to the parking lot. I was so out of breath I couldn’t talk when I got in the car. Weird. I mean, I am totally out of shape, but I had walked around all day at the amusement park the day before without any issues. We went back to my mom’s house, where a bunch of my family started playing card games. I was on the couch, and when I got up to get a drink, I got a sharp stabbing pain under my ribs on the left. I remarked to my mom that I must have slept wrong on it or something. The pain continued, and I laid down on the couch and took a nap. I felt worse when I woke up from the nap. I sat up in a chair, hoping that would help the chest pain. It didn’t. Then I remembered the right calf pain I had been having for the past 2 weeks. I had woken up with it one day out of the blue, and assumed it was a pulled muscle. As I sat there in the chair, I put two and two together, and realized the calf pain was a DVT (blood clot) and that it had now traveled to my lungs and caused a PE (pulmonary embolism, blood clot in the lungs). I started crying immediately. This was the afternoon before we were leaving to go back home (by plane). I told my mom we needed to go to the ER.

When we got there, we were taken back right away (a cancer patient with chest pain, possible PE is high priority). The doctor came in right away as they were doing an EKG (which came back normal, other than tachycardia). My resting heart rate was in the 120’s to 130’s, normally it is in the 60’s or 70’s. I went for a CT very quickly, and it showed lots of blood clots in my right lung, and a few smaller ones in my left (where I was having pain). It hurt to breathe! And I had a fever of 102.9, which I find weird, but explains why I felt so crummy. The ER doc put me on Xarelto (a blood thinner), and told me I’d have to be on it for 3-6 months. I begged him to let me go and travel home the next day. He reluctantly agreed (if I wasn’t traveling he would have kept me overnight). Xarelto doesn’t dissolve the existing clots, but prevents new ones from forming. It starts working right away, so he felt ok with me leaving. Plus I am a medical person, so he trusted me to know if I got into trouble again. The following day, we shifted all the stuff we were taking on the plane into my two daughters’ backpacks, and I just had my fanny pack with my wallet. I couldn’t carry anything, or walk very fast. The airport sucked. Anytime I got up and walked even a few feet, my heart rate shot up and I was super short of breath. My chest still hurt like someone was stabbing me with a knife every time I inhaled. Somehow we got through it, and made it home safely. I have an oximeter at home (measures oxygen and heart rate), and over the next week my heart rate slowly came back to normal, and the chest pain went away. The lowest my oxygen got was 92%.

I saw my oncologist for my last infusion 4 days after I was diagnosed with the PEs. He looked at everything, and said that I needed to be on the Xarelto for a total of 3 months (since there is a clear reason why this happened: cancer and chemo put you more at risk for blood clots). We discussed the chemo, and both agreed that going ahead with the last round of chemo would be fine, and no need to delay it. So I had my last round of chemo while trying to get over bilateral PEs. I was pretty miserable for that first week.

Oh, I forgot to mention, the night before my infusion we had severe thunderstorms, and I was woken up in the middle of the night to a loud clap of thunder. Then on the morning of my infusion I went into my home office (which faces the front of the house) to find this as my view:

I ran outside and found this:

So, lightning really did strike. Ugh. Just another headache to add to the year 2022.

Then, on the third week of my last round (I was so close to the finish line!), I got super short of breath again, and my resting heart rate returned to the 130’s. Fearful that more blood clots had formed, I went to the ER again (I hate that place!). They did a CT scan of my lungs, and found the blood clots were gone! Like totally gone! Hallelujah! But they weren’t sure what the cause of my shortness of breath or tachycardia was, so I got admitted. I stayed for 3 days, and the best they could come up with was severe dehydration, which makes sense to me. I was soooooo thirsty the week before being admitted, I was drinking everything in sight. I drank a gallon of orange juice in one day, along with milk, gingerale, and lemonade. I couldn’t get enough. But all of that fluid went through me super quickly, and within 10 minutes of drinking, it would end up in my ileostomy bag. My urine output was very low. I was trying to hydrate myself but I couldn’t. So that’s why I ended up in the hospital. All of this sucks, and I was super weak for the week following discharge. But I’m happy to report that I felt much better the second week.

So, to recap, chemo is done! PE’s suck. So does dehydration. And so does a tree falling on your house (no damage to the house, miraculously). I am DONE with complications, and from now on, I will WILL my body into behaving. I actually felt good enough to volunteer at the Twin Cities Get Your Rear in Gear colorectal cancer 5k. Next step: Ileostomy reversal surgery in November!

Giving away Survivor Shirts with some fellow survivors!

Me insider the giant colon, next to the cancer

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Lightning Strikes

So, I’m hanging in there, some days by a thread. Chemo is no joke. I mean, I knew I would have fatigue and nausea, but I don’t think anything could have prepared me for the other lovely side effects that would come along as well.

I am doing a chemo regimen that is specific to colorectal cancer, known by several cute names, including Xelox and Capox. It is a combo of two different poisons, given in rounds that are 3 weeks long. On Day 1 of the cycle, I go into the infusion center at the hospital and get my port accessed. The first time it was accessed was super painful for a few seconds, as the nurse jabbed the 18 gauge needle through my skin and into the rubber interior of the port. After that I got a prescription lidocaine cream to put on the port site about 30 minutes before getting to the infusion center. The subsequent times it didn’t hurt AT ALL! Score one point for me. However, almost all of the remaining points will go to chemo, as you will see (it doesn’t play fair). After the port is accessed, the nurse draws labs and sends them off. If your blood counts are too low, they may delay your chemo for a week or two. This hasn’t happened yet to me, and all labs have looked good (I guess that’s another point for me). Then the provider (my oncologist or the PA) comes in and sees how you’re doing. The first visit was just going over potential side effects etc, what to expect. Once the labs come back and they look good, they get the go-ahead to start the infusion. The medication is oxaliplatin (the “ox” in Xelox/Capox), and it is given over a 2-hour time frame. Chemo medication is toxic, obviously, so the nurses don full PPE when handling it, so they don’t get exposed to it inadvertently. While it’s infusing, I watch a movie on my tablet, watch tv, or take a nap. The infusion center is super nice with private rooms with big windows. When the infusion is done, the IV pump beeps an alarm, and I ring for the nurse to let her know it’s done. Then I go on my merry way to await what is to come. This was me as I got my first infusion:

The other chemo medication is called Xeloda, or capecitabine (generic), which makes up the front part of the Xelox/Capox acronym. It is an oral medication, what I affectionately call my “poison pills”. I have to take 4 large pills twice a day. I start the night of the infusion, and take it for 14 days. Then I get a week off with no chemo, then on Day 22 go back to the infusion center and start all over again.

Now, for the really unpleasant part (at least for me, you probably won’t mind reading it). The side effects. The most prominent one which starts right away (while I’m still getting the infusion) is cold sensitivity. Doesn’t sound like much, but it is debilitating. Imagine not being able to touch anything cold with your hands, otherwise you get a sensation of instant frostbite, like your hand is being zapped by an internal lightning bolt. Kinda like touching liquid nitrogen that is used to freeze warts. While getting the infusion I usually have to use the bathroom halfway through, and touching the cold IV pole to drag it along with me is electrifying. I have to use the sleeve of my sweatshirt pulled down over my hand to touch it. Now, think of everything in your day to day life that is cold (or even slightly cold). Anything in the fridge: off limits unless wearing winter gloves and even then it is unbearable. Forget taking anything out of the freezer. The stainless steel handle of the oven or dishwasher. The metal drawer pulls in the kitchen. The doorknobs. The wooden banister on our stairway (which apparently I run my hand along when I go down the stairs). Any drink, in a cup, can, bottle. Dishes taken from the clean dishwasher to be put away, especially silverware. The flush handle of the toilet. An egg taken from the fridge. And not only is the cold sensitivity in your hands, but in the skin of your entire body. The air conditioner cannot blow on your face in the car, that feels excruciating, even with the heat wave we have had this summer. It feels like instant pain/burning/freezing. But the real kicker is this: The worst location for the cold sensitivity is in your mouth and throat. So no cold drinks, or even room temperature. Otherwise you get the simultaneous sensation of your throat swelling shut and being stabbed in the throat with knives. It is not a pleasant feeling. But you’re thirsty, because you aren’t drinking anything except hot chocolate, due to the cold sensitivity. So you yearn for a nice cold lemonade, but you can’t have it. Therefore, you get dehydrated pretty quickly. Add in nausea (which anti-nausea meds zofran and compazine were not even touching) and an absolute lack of appetite, and 4 days into my first round I was absolutely miserable and had to go to the ER for fluids. The fluids didn’t seem to help (although they probably did?), and I went home to wallow in my misery yet again. That first round I was probably eating less than 200 calories a day for the first week, forcing myself to eat a corner of a graham cracker and loathing every minute of it. I lost 5 pounds in 4 days. I laid on the couch for most of the first week. I checked in with my online colon cancer support group for any suggestions. For some, the cold sensitivity is minor, but I couldn’t tolerate even room temperature liquids until probably the third week. Based on suggestions from others who had been through it, and some research on my own, I called the oncologist’s office and asked for a few things to be changed for the second cycle. We’ll get to that in a minute.

Some of the other side effects are also horrendous. “First bite pain” is a weird phenomenon that causes extreme pain (for lack of a better term) when you first take a bite of something. It’s like someone shooting a lightning bolt through the salivary glands in the back of your jaw on each side. It hits you so suddenly, and it surprises me every time (you’d think I’d learn to anticipate it). The pain is super intense, and dissipates after about 10-15 seconds. The first time I ate after my first infusion, I took a bite and froze instantly with the pain. My teenage daughter looked at me with concern. “Are you going to throw up?” All I could do is shake my head no, I couldn’t even speak to tell her what was happening. The first bite pain gets gradually better over time, and goes away completely in about a week. Yowzers.

Another major side effect is neuropathy. Tingling and pain in the fingers and toes. This is one of the reasons I haven’t written a blog post until now…it hurts to type. The neuropathy is triggered by cold sensitivity. I have to run my hands under hot water to make them feel temporarily better. It takes our hot water about 30 seconds to get hot once you turn it on at the faucet, so I am constantly turning the faucet on well before I need it. Yes, I’m wasting water over here. So sue me. I have to keep my feet in socks and slippers at all times to keep the neuropathy tolerable. Otherwise it is super painful to walk. The pain is real! For a few days after the infusion, even the seams from my pants rubbing on my skin hurt my legs. My nostrils feel tingly and they hurt when I blow my nose.

I also got a weird side effect during the first round that my oncologist had not seen before. Starting on Day 8, my eyes really hurt when I moved them. Like looking side to side was painful in my eye muscles. I couldn’t focus when my daughter would scroll through Netflix looking for a show, I had to close my eyes. I got a headache because it was hard to focus my eyes. And of course, being the medical professional that I am, and having access to information about drugs, I found out that oxaliplatin can cause optic neuritis. Yikes! An inflammation of the optic nerves. My symptoms were spot on for optic neuritis. I called my oncologist and although it’s not something they had dealt with in any of their patients, they sent me to an eye doctor. Thankfully, he said my optic nerves looked normal. By the time I saw the eye doctor, the symptoms had pretty much gone away, but it made me feel a lot less anxious knowing that there was no damage to my eyes. I kinda need them.

And last but not least, everything tastes bad. Everything. I put something in my mouth and chew it, and it tastes almost normal for a second, but quickly starts tasting like garbage. Drinks taste like dishwater. This is inconvenient, especially if you are nauseous. Ugh. My mouth feels like it is burned, like I’ve been careless with hot pizza. And there is a film in my mouth that never goes away. Oh how I long to have something taste good again! I’m told it will get back to normal once I am done with chemo.

I have to do 4 rounds of this, which I know could be worse, but it is still pretty bad. Misery has its degrees. I am currently on Day 9 of my third round, one more to go! Some things were changed after the first round, and the second and third rounds have gone so much better than the first (which felt like a total disaster). Starting with the second round, they reduced my oxaliplatin dose by 20%. As my oncologist explained, I must metabolize it more slowly than other people, since I had such severe side effects at the full dose. So reducing the dose is in effect giving me the same amount of medication that other people get from the full dose. The second thing they added was an infusion of a med called Emend, right before the oxaliplatin infusion. This is an anti-nausea med. Bring it on, the more the merrier! Thirdly, I am now pre-scheduled to get fluids two days after infusion. I don’t know if it really makes a difference, but it certainly can’t hurt. I go into the infusion center and they give me a liter of fluids through my port in about an hour. Finally, they added olanzapine. It is an anti-psychotic drug that has the weird benefit of helping cancer patients with nausea! It also increases appetite, which was huge for me. I take it at bedtime starting the night before infusion. It makes you sleepy, so has the added benefit of helping me sleep. Olanzapine has been a life-saver! I take it every night until I’m done with the two weeks of Xeloda. I tried going off it earlier than that and I was much more nauseous the next day, so I know it is working.

So, although I’m limping along this summer with chemo, I am finally staring down the last round and looking forward to feeling better! Some of the side effects, notably the neuropathy, could be permanent, but should improve over time. One notable side effect that DOES NOT occur with this regimen is hair loss, so score one more point for me. After my last round of chemo I am going to have a CT scan, and then follow up with my surgeon to discuss reversing my ileostomy in the fall. After the reversal surgery, I am potentially in for a whole ‘nother experience, as many people have bowel control problems for a period of time (or permanently). I will cross that bridge when I come to it. For now I am seeing the light at the end of the tunnel, and ready to feel better.

If you are 45 or older, GET YOUR COLONOSCOPY!

PS. Update on the kidney stone: I passed it! Although I never saw it. I felt like I had a grain of sand in my urethra for about a week, then I felt normal again. It was really hard to push fluids since I couldn’t drink anything cold, but the little bugger is gone!

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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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Nothing says Easter like a clear liquid diet and full colon prep

Well, I haven’t written on this blog for almost 4 years, and yes, you can infer that I haven’t really been running during that time. It is always on my mind, and I really want to get back to running and racing. The COVID pandemic put a damper on racing, and now that *seems* to be getting back to normal. However, I ran into a little stumbling block recently: rectal cancer. I am 48 years old, and like many my age, I never thought I could get colorectal cancer. But it’s real, and it’s far too common in people under 50 these days. The recommended age for screening colonoscopy has been lowered from 50 to 45, so get your colonoscopy if you are over 45! The prep is what scared me the most, as probably with most people, but it’s really not that bad. My fear was the actual drinking part, not the aftermath. I have an aversion to drinking liquids that taste bad. In college I was prescribed a cough medicine and gagged every time it got near my mouth….I couldn’t drink it! But let me tell you, I have now done 3 colon preps in the last 3 months (Easter will be the fourth), and if I can do it, you can do it. I have no colorectal cancer history in my family. So get screened! *steps down from soapbox* For the immediate future, this blog is going to be my cancer journey (one I hope is short), and after that, I will get back to running.

The reason I am doing a colon prep on Easter is that the following day, I will have surgery to remove my rectum and sigmoid colon, and all of the adjoining lymph nodes. Don’t worry, everything is going to be hooked back up so I have working plumbing, but I will get the pleasure of having an ileostomy bag for 3 months while my colon heals. Then sometime late summer, if all goes well, I will have surgery to reverse the ileostomy and put me completely back together again. Probably not “good as new”, but some version of that.

I am a little different than the average patient, in that I have been a physician assistant for almost 20 years, and before that I was a surgical tech, working in surgery. I worked in the operating room a total of 10 years before moving on to my current position. I have seen the exact surgery I am going to have, I have assisted on the exact surgery that I am going to have. It is called a low anterior resection. I know the instruments, I know what will be happening to me during the surgery. It is slightly more terrifying than not knowing. I have the privilege of understanding everything the surgeon has told me, and can be an informed partner in my care. But ugh, those of you who work in surgery know what I’m talking about. It is so weird being in the patient’s position. Feels very vulnerable, especially for me since I am such a control freak. I have to have faith that the surgical team will do everything the way I would do it.

As far as staging, my cancer is thought to be a T1-2 (hasn’t invaded through the whole bowel wall), N0 (no lymph nodes containing cancer), and M0 (no metastasis, or spread of the cancer to other parts of my body). This is a great position to be in, because if the staging remains this way once the surgery is complete, I will not need chemo or radiation. That, of course, is the hope.

For now, my goal is to get through surgery, work on weight loss, and get back into running. If everything goes well, I could possibly do some 5k races in 2023!

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