The Gross Post
Well, I need to be honest. I haven’t been completely open about some of my chemo side effects. I’ve really struggled with how much to share and where to draw the line with my privacy - but at the end of the day, if I want this platform to be used to help other people going through treatment, then I need to let down my guard and expose my most intimate battle. So here goes.
I think in my previous posts I’ve alluded to some icky digestive issues caused by the chemo, but there is so much more to that side of my struggle. As a lot of you know, I’ve been in the hospital since Wednesday and had surgery that night for this gross issue, but not many of you know the specifics. Disclaimer - if you don’t want to hear the gritty, foul, nasty details of what my body is doing, then please skip this post. I’m not 100% comfortable sharing all of this, but I have to think there may be people reading this that are also going through chemo that might benefit from hearing these details. So some of the common chemo side effects include constipation, diarrhea, intense gas and bloating, indigestion, acid reflux - you have to keep in mind with that much poison being pumped into your system, it has to make it’s way out eventually. So after each chemo cycle of 100+ hours of poison going into my body, I now know that the first few days after getting detached from the bag means I’ll be dealing with this very unpleasant digestive bullshit. It completely tears apart my stomach with so much pressure and pain and frequent trips to the bathroom. It’s quite literally poison coming out of my body burning it’s way through. I have to imagine this side effect has been more intense for me because of the quantity of poison I get pumped in compared to those chemo patients who are only getting a few hours of chemo every few weeks. For me, this side effect has increased with each round (as most of the chemo side effects tend to do), and this time around I was forced to see someone about it. With the last round of chemo I felt some severe pain down below as well and I don’t know why I thought the issue would go away on it’s own, but of course it was even more painful this time.
You may recall the last round when I had a high fever and had to go to the ER - well what I didn’t share then was that I thought my fever may be caused by some terrible hemorrhoids. Now hemorrhoids aren’t something that I’m unfamiliar with - as someone with 2 kids, this is a pretty common issue, but this definitely felt more painful than normal. I’ve even had experience with hemorrhoid thrombosis (please don’t google it) which I’ve had to seek medical attention for. So I thought maybe that’s that I had, even though I could tell what I’ve been dealing with since starting chemo seemed slightly different that that. When I went to the ER during my last post chemo cycle I mentioned what I thought were hemorrhoids, they took a look and didn’t see anything - and yet 2 days later I was in agonizing pain, not able to stand for more than a minute or two - all I could do was sit on top of several firm pillows rocking back and forth with tears streaming down my face just praying the pain would end soon. No amount of painkillers were even helping what I was feeling and I purchased every cream and gel and numbing spray I could find with no relief. Not wanting to deal with the embarrassment of having a medical professional poke around where the sun don’t shine, I just tried to tough it out and a few days later it was all feeling better. I was hoping this was a one time situation, but sure enough 3 days after ending chemo this time, I felt the same excruciating pain. This time I knew I wouldn’t be able to tough it out. With each round of chemo, the side effects get more and more intense and I have less and less energy so after a sleepless night on Tuesday of this week I made the decision to call my doctor Wednesday morning to ask for help. This also happened to be my kids first day of school - great timing. I tried to help with their zooms on Wednesday morning, but it was clear I was not in any position to help them if I was literally moaning in pain the whole time. I spoke to my doctor at about 10 am and he told me to go to urgent care. My mom came and picked me up and drove me to urgent care just before noon and that kicked off this whole awful nightmare I’m still currently in.
While in urgent care I was examined by several doctors and to my surprise, hemorrhoids were ruled out. They were able to clearly see a 5 cm large infected perineal abscess (again I really must stress that you don’t google this). This is something that people with crohns or colitis can get easily for their frequent digestive issues, but it becomes a bigger concern for someone with lymphoma because it could be a sign of rectal cancer or more lymphoma. One of the possibilities was that it was more lymphoma making it’s way out of my body - and since my lymphoma is already down in my lower pelvis, so close to this area, it was a real concern that that’s what we were dealing with here. This whole cancer thing has been so stressful and painful and scary and I just feel like I can’t catch a break. They immediately hooked me up to an IV and started pushing in antibiotics to deal with the infection while they put in an order for a CT scan to determine if it’s just an abscess or if it’s more cancer. I had been in the urgent care for about 3 hours at the point when I finally had the CT scan done and I was shaking with pain by this point too. I was told the we would have to wait about an hour for the CT results to come back, but in the meantime they were able to give me morphine for the pain.
Now, I like to think I have a high threshold for pain - after all I had my first kid with no drugs and I managed to endure several months of a growing tumor before complaining - but let me tell you about the pain that this was causing me. It was by far the most excruciating pain I’ve ever experienced in my life and I am still mad I didn’t get more sympathy while in urgent care. I don’t know why it’s so important to me that the doctors and nurses don’t think I’m a wimp, but it really is. Maybe it has something to do with my childhood and always being seen as the baby or as the crier in the family - but for whatever reason I need people to know that I’m not a wimp. I’m actually incredibly tough and have endured more pain than I’d wish on anyone, so when I’m complaining that something is unbearable - you better believe me. I think my high tolerance for pain is also why IV morphine doesn’t work on me. They gave me some and then gave me more - and I barely felt anything. It was at that point that the doctor came rushing in with the results of the CT scan. IT’S NOT MORE CANCER! I was so relieved that I started crying (for reasons other than pain). Finally some good news. It’s just an abscess and not lymphoma popping through my body! It will still require a procedure, but still - this was good news. And wait for it - the doctor had even better news to give me. Since they were scanning the same general area as my tumor, she was able to give me an update on that too. My scan from June before my cancer diagnosis showed my tumor at 10 cm - now… it’s at 5 cm. HALF! My tumor has shrunk in half. I was so happy to hear this. I needed so badly to see progress - to know that the trauma I’m putting my body through is actually working - the chemo is working.
All of this was good news, great news actually, but still didn’t mean I was out of the woods. They let me know that they would be transporting me by ambulance to the hospital in Irvine to have surgery to remove the abscess. It took another hour for the ambulance to arrive which gave Eric time to pack me a bag since I would most likely be spending the night at the hospital and then my mom went and picked up the bag and drove it down to Irvine for me. In true Gretchen fashion, she found out where the ambulances would be pulling in and illegally parked right in front of the EMERGENCY PARKING ONLY sign and waited to greet me (and kind of tried to sneak into the hospital with me too). I’ve spent so much time in the hospital this summer all with no visitors and it really had made all of this so much harder. Being alone and in pain and trying to advocate for myself is so challenging. I know I’m technically an adult and all, but sometimes we just need our moms to yell at nurses to get pain meds faster.
I was wheeled back to the ER and again was hooked up to more antibiotics and more morphine (that did nothing for my extreme pain). It was now 6 pm and I was just hoping they would be able to do the surgery that night so I could get some relief. I saw the ER doctor, internist, OBGYN, and general surgeon and each one examined me in the most painful way - poking and prodding in the most sensitive area on a person’s body. The general surgeon and the OB couldn’t figure out if my issue was more one of their jurisdictions than the other - so they decided it was best that they both be involved in the procedure. My main concern as they wheeled me back to pre-op was if they were going to try to remove the abscess under local anesthesia or if I would be put under. I just need them to knock me out and wake up when it was all over - and after my screaming and wailing during the various examinations in the ER, that’s what they decided to do. I know I was scaring the other patient, but I had officially run out of tolerance for pain sometime around 8 pm. The only other surgery I’ve ever had was when I was 13 and I broke my thumb in gym class and needed to have the bone set with some pins. I was really nervous, but my need to be out of pain outweighed that. They handed me the blue hairnet thing and I think I laughed as I currently have no hair, but they told me it was required. Then they had me sign my life away and in we went to the operating room. I remember them putting the oxygen over my mouth and told me to breathe and just like that it was all over. I woke up in recovery, surprisingly very aware of what was happening and just so grateful that I was finally out of pain. I texted my family that I was out and heading up to my room. Just as difficult as it is to explain the amount of pain I was in, it’s equally difficult to explain the sensation of suddenly being pain free after such an ordeal - I felt great and I was ready to get some sleep.
The next morning (Thursday) I was told they would be releasing me as long as everything looked okay and since I was still feeling so good, I believed them. Not so fast. They drew blood and of course I knew this was about the time in my post chemo cycle that my white blood count would be really low and so of course it was almost at zero and that’s when they had to break it to me that they would need me to stay until my whites were at a good level. The risk of getting an infection is too high with an open wound and with no immune system, my body wouldn't be able to fight it off. Well, it’s now Saturday night and my white blood count still hasn’t gone up enough. Each day they draw blood and we’ve seen very little progress. I have been getting my shots every night to get them to go back up, but it usually takes several days for them to spike up. Thursday they were at 1.1 and as of this afternoon they were at 3 (normal range is 4-10). Never did I think going to urgent care before noon on Wednesday that I would still be here on Sunday, but here we are. I have shed so many tears thinking about everything I’m missing out on while I’m held captive here because of my own failing body. Today my baby boy turned 6 years old and I couldn't be there with him. It breaks my heart that I’m missing out on what should have been such a fun day. No mother should have to FaceTime their kids to sing happy birthday. None of this is fair. I know this is for my own good and this is what’s safest for my recovery and blah blah blah - but that doesn’t help when all I want is to go home and hug my family. I really hope they’ll let me go tomorrow.
They’ve told me that I’m healing well and with any luck it won’t be a recurring issue, but still something else to add to my growing list of anxieties for each future round of chemo. I also don’t know yet if this surgery and hospital stay will cause my oncologist to want to delay my next round of chemo. As much as I would love another week off of the bag, what I want more is get rid of the remaining cancer in my body. Thank you to everyone who has reached out - I read all of the comments and while it’s too tough to always respond, please know that your words and thought and prayers are really helping. I know I’m lucky to have so many people pulling for me and I certainly hope I don’t let you all down.
