Symbols Key:
💉Blood draw with syringe and/or IV
👆Finger stuck up my butt
🧪Fluid up my butt
🔦Some other object up my butt
0️⃣-🔟General Discomfort Scale
Below is a play-by-play account of each medical encounter I've had. Added detail has been added to specific visits where I thought it was appropriate or entertaining. Of note, there have been almost daily medical visits, but most of these take an hour or less and the doctors have been very good about scheduling and rescheduling around my work. I'm very lucky to have a job where I have some control over my schedule and a lot is done over the phone. This situation has reaffirmed my decision to keep my care local and where I spend most of my working day.
June 12, 2024
Follow Up with my PCP and bloodwork at lab - everything comes back normal. Referral to proctologist is entered. 💉1️⃣
June 24, 2024
Follow Up with Gastroenterologist to schedule colonoscopy.0️⃣
July 2, 2024
Follow Up with PCP to review test results, address dull pain in abdomen/lower back. Abdominal ultrasound ordered. 0️⃣
July 9, 2024
Abdominal Ultrasound. Quick and easy test where I layed on a table and a technician covered a probe in gel and moved it around my abdominal area. No kidney stones, hernia, fatty liver or baby were found. 0️⃣
August 15, 2024
Prep for colonoscopy. Ducolax pills and Miralax mixed with Gatorade. I didn't plan on leaving the house for the afternoon, which was a good thing. Probably 20 trips to the toilet. 🚽💩1️⃣
August 16, 2024
Colonoscopy Day. As mentioned previously, the colonoscopy itself was completely painless, but you do need an IV for sedation. Getting told you have cancer is pretty high on the discomfort scale, but leaving emotional discomfort out, I'm putting this as a 💉1️⃣
August 20, 2024
Follow Up with my chosen Oncologist and more bloodwork is taken. CT of my chest and abdomen are ordered to check for mets. MRI of my pelvis is ordered to get exact measurements of tumor as well as lymph node and local tissue involvement. 💉1️⃣
August 21, 2024
CT of chest and abdomen with contrast. MRI of pelvis. The lab REALLY dropped the ball with my pre-visit telephone instructions. To get in quickly, I scheduled the CT scans at one of the company's imaging locations at 1PM and the MRI at another location at 4PM. I was assured this schedule would work and when I specifically asked about any prep, I was told that "no prep was needed". When I showed up for my CT scan, I was told that I'd need to reschedule my MRI because I would have enough time to prep, so it was rescheduled to 8:15PM. The CT scan with contrast was, um, intersting. I had an IV placed and laid on the table. I was instructed to drop my pants to my knees (there was a towel to cover me) and was told that when they injected the contrast it would feel like I wet myself. Well, that was the perfect description - a warm wet feeling all around my bicycle seat. Anyway, the CT was relatively painless, but was then given my prep instructions for the MRI. I had to refrain from eating for 3 hours before the test, and 1 hour before the test I had to do a fleet enema. No biggie, right? Well this was the first time I had done an emena and it surpised me to say the least. The instructions on the box say to squirt the little bottle of solution up the old pooper and hold it in for 2-5min. Being an overachiever, I initially decided to go for the full 5 min. About 30 seconds in though, I didn't even think I could make it to the 2 minute mark! I've never felt such a strong urge to evacuate in my entire life! I made it to the 2 mintute mark and had a moment like Jeff Daniels in Dumb and Dumber. Somehow, even though only 4oz went in, about 4 liters came out! I would rather do 10 colonoscopy preps than another enema. Unfortunately, I have many of both in my future. Anyway, I completed my prep and showed up for my evening MRI. When I arrived, I was asked if I was told that they would be "injecting gel into my rectum". I assured them that I'm sure I would have remembered that detail and that I was most assuredly not told that. But yes, they were going to inject 300cc of gel into my rectum. After struggling to hold a fraction of that for a mere 2 min, my natural first question was how long I needed to hold that gel in there for. I was very non-chalantly told that the MRI usually takes about 25-30min. I then asked if there was a cleanup crew for the MRI machine, but I was assured that I would be able to hold it. The technician also told me that there is another MRI where they inject the gel and the patient is instructed to push it out while the MRI is being performed (foreshadowing....)! She then pulled out the "applicator" which was skin colored and looked like a skinny penis and filled me up like a gel-ly donut. I actually found the "applicator" on the web - here. See, I wasn't exaggerating. This was uncomfortable and basically felt exactly how you'd imagine. Thanks to sheer will, and the laws of osmotic pressure, I was able to keep the MRI machine unsoiled. When the test was over, I was handed a small hand towel and told I could wipe myself off to clean up. I still felt "full", but when I went to the toilet to release the pressure, there was nothing there. My body had absorbed the gel! Again, the wonders of osmosis. Anyway, between the poor instructions, MRI prep and gel violation, this was the most discomforting set of tests thus far. 💉🧪🔦5️⃣
August 22, 2024
Blood draw for DYPD genotyping. Certain mutuations on this gene can caused increased toxicity to the chemotherapy. There was no mutation, so chemotherapy will proceed as planned, for now.💉1️⃣
August 30, 2024
Port placement. This was a very routine procedure that was successful and medically uneventful. I still devoted an entire page to it though. Being sedated is great and nothing was stuck up my butt, so this was a 💉🔪2️⃣
September 5, 2024
Preparation for chemotherapy infusions. At this point in my care, I was still planning to follow the PROSPECT protocol, where I get chemotherapy infusions first. This visit was my first in-person visit with my nurse navigator to educate me about what to expect during my chemotherapy treatments. This was also the first time that the port was accessed to draw blood from, for routine labs. The treatment plan ultimately changed, so I'll save the chemo infusion information for a later post, but the general gist is that while the chemo is starving out the tumor, it also significantly impairs my immune system and kills lost of other cells too, especially the ones preventing me from having constant diarrhea. With a hobbled immune system, even the slightest sickness can be dangerous, so I have to be very careful. This may be easier said than done, though, with kids at home and some upcoming travel planned. Although my nurse navigator was reluctant to let me travel while on the chemo, my doctor stopped by, bro-ed out, and gave me the thumbs up as long as I'm responsible. The other thing he mentioned at this visit, though, was that he knew I had my consultation with the surgeon the following day and that our plan was to skip radiation, but he had prophylactically put me on the schedule with the radiation oncologist for the following Monday. At the time, we were almost certain this appointment would be canceled, becuase the only reason I wouldn't be having surgery was if the tumor was too close to my stinky winker to save me from having a permanent colostomy. Based on the MRI, the tumor was high enough into my Puez Canal that this shouldn't be the case, but we wanted to be prepared just in case we were thrown a curveball...which we were. 💉1️⃣
September 6, 2024
Surgery consultation. I covered the information garnered from this visit pretty extensively on the front page of this website, so I won't repeat too much here, but up to this point this was the worst day so far. Walking into the office, I was sure that this was just going to be a quick visit to confirm an easy surgical procedure from which I woud fully recover my normal life. Walking out of that office, after learning that LARS was not just the drummer from Metallica, I was consumed with thoughts of my future life and what it would look like. Would I ever be able to take my kids to Disney and wait on a long line? Hell, would I even be able to stand on the sidelines to watch a soccer game? I knew that radiation would probably zap out my gonads, but given the choice of lifetime of Viagra or Depends, which was more important? Needless to say, I was anxious to meet with the radiation oncologoist and would definitely be keeping that appointment.
After the shattering LARS discussion, the surgeon finished up his visit with a rectal exam. Oh my God, I think he was trying to reach in there and pull out the tumor manually. I think I later coughed up a fingernail! Needless to say, this was very uncomfortable, so I'm giving it a 👆4️⃣
September 8, 2024
Free Telemedicine Visit. This was the Sunday night mentioned on the front page where the colorectal surgeon spoke with me for about an hour. I just just starting sharing the news with some of my closest friends, knowing that most would approach this as an "all hands on deck" mentaility. With so many people in my circle with such close ties to medicine, I knew that I would soon be quickly expanding my care team, and that is exactly what happened in this situation. And let me clarify, I feel truly blessed to have this type of support! This is also a good place to explain how I've generally decided to leak the news to people.
I don't want anyone to think that the order in which I've told people about my diagnosis has any correlation to how close I consider our friendship. There are MANY people who I consider VERY close friends (and most of my extended family) who still don't know as I'm writing this now (9/23/24) and probably won't know until I'm well into my treatment. I'm very torn about this because there are a number of people, especially people I work with, who will probably learn about this secondhand and not directly from me. I know that I would be feel somewhere in the realm of disappointed or hurt if a close friend had kept this from me, like that feeling of not getting invited to their birthday party, but please realize that this isn't the case at all. When I was first diagnosed, I decided that (a) I was not going to tell anyone about it until I knew enough to answer the most natural questions that they would ask and (b) if possible I was going to push through this with minimal change to my day-to-day life. I'm no psychologist, but something changes when you talk to people about this. We all have carefully curated relationships with everyone we know and as soon as you start talking about your cancer with someone who you usually chat about kids/work/sports/internet memes/old times/etc. then the relationships gets weird. It's more complicated than this, but the most simple way of putting it is that I become a "victim" and people start being "nice" or at least "sympathetic". I'm sure plenty of people in my predicament barely notice this change, dont care, or even thrive off it, but for me, nothing makes me feel like I'm weak or dying as much as someone being nice to me. Also, when those relationships go from lighthearted to serious, you really do appreciate how much people really care about you and vice versa, which is when I start getting choked up, and no one wants to see me cry - it's ugly. I'm sure most of you kinda know what I mean by all of this, so I guess this is my way of saying that if I haven't specifically pulled you aside and told you I have cancer, it's not you, it's me.
Once I learned more about my exact situation and the initial treatment plan, I shared it with my sisters and parents. After that, I kept very quiet about it until Labor Day weekend and the days that followed. My birthday happened to fall around that time, so a few people who called or visited that weekend had our lighthearted Happy Birthday call end with a thunderbolt of bad news. Since then, I've brought it up at times where I thought it was appropriate, which is basically never, so if you happen to have been nudged one day and told, "Hey, you know that guy Tom with the great hair and chiseled physique? Well he's got a huge cancer growing in his ass. Really! Go check out his self-indulgent website where he whines about it!" and that's how you're here, please don't take it personally.
September 9, 2024
Radiation Oncology Consultation. After my visit with the surgeon the Friday before, I spent the weekend researching everything I could about my treatment options. I read the PROSPECT and OPRA trials and read papers and patient testimonials about LARS and radiation side effects. Then I did a lot of soul searching, trying to come up with my honest personal answer of what was more important to me - my dignity or my sexuality. The surgical option will almost definitely leave me with LARS, wearing diapers and Puma pants. Radiation, on the other hand, will sterilize me, possibly leave me with ED and possibly other side effects (including, ironically, the possibility of LARS-like symptoms). Also, the radiation pathway only gives me a 30-50% chance of avoiding surgery, so this choice could potentially leave me with all of the side effects. The mortality rates, which would trump anything, are identical for whatever pathway I chose. Ultimately, I chose to roll the dice with radiation. From what I read, the really bad side effects of radiation (lifelong anal pain, fistulas, turning into the Hulk) were pretty rare and most people try to avoid radiation to preserve fertility. Luckily, I've used up all the fertility I plan to ever use, and penis pumps are all the rage, so LFG! I had made this decision before meeting with the radiation oncologist and that appointment generally went as I expected. The doctor confirmed most of what I had read online, supported my decision based on my expectations and reasoning, and told me we could start the treatments the following week. I asked about delaying the treatment based on some upcoming travel, which he was completely fine with, but after circling back with my medical oncologist, we decided the sooner the better. Keeping with the pattern of throwing last minute curveballs, though, as we started talking about the upcoming radiation schedule, he told me the first thing was to come back later in the week to be fitted for a mold that would be used for my radiation treatments. I just said okay and walked out of the office, but when I got in my car I thought to myself, "Wait, what are we taking a mold of"?!? 0️⃣
September 10, 2024
Planning for ChemoRadiation. After the visit with the radiation oncologist, I circled back with my medical oncologist and let him know that I had decided to take the radiation route with the hope of "organ preservation". He was agreeable to this plan, and we had a good discussion of my thought process and why I came to that decision. During the radiation phase of the treatment, oral chemotherapy is also prescribed to make the radiation more effective. Might as well weaken the cells as you destroy them, right? The oral chemo is called capcitabine and essentially becomes fluorouracil once digested, so has similar potential side effects. The fluorouracil is one of the chemo drugs in the FOLFOX cocktail that will be infused in the next phase of my treatment and the side effects are listed on my Side Effects page. Capcitabine has the branda name Xeloda, but let's be honest, my insurance is definietly going to only approve the generic. My doctor explained that the capcitabine has to be delivered by a specialty pharmacy and that it would arrive before my first radiation treatment. I immediately forgot this detail.0️⃣
September 11, 2024
Second Opinion & the JANUS Trial. The surgeon who had spent his Sunday evening advising a total stranger had recommend that I chat with his medical oncologist friend who was part of another hospital system here in Phoenix. This doctor specialized in colorectal cancer and the center was supposedly very good. The surgeon texted me and that doctor over the next two days and I was worked in with a same day appointment. Again, special treatment that I am very grateful for. When I showed up for this appointment, I did notice that the center ran very smoothly, registration was done quickly, in person and all documents and signatures done digitally. There was valet parking, a beautiful lobby and nice waiting area. I was brought back quickly and the doctor did a great job explaining my diagnosis and treatment options. He then told me that he would be presenting my case to their weekly "tumor board" and would call me the following week with the results of that discussion. I have no idea what the "tumor board" is, but in my head it is in a mahogony conference room with a long table with the world's top cancer doctors gathered around it and a 3D hologram of my body from my belly button to mid-thigh is projected in mid-air in the center. The doctors tilt and rotate the hologram to get the best views of my tumor and argue over the exact way to attack it, maybe even pushing little pills around the table with a long stick, like in the strategic war rooms of WW2 movies. Anyway, after he mentioned the tumor board, he told me that his center was involved in a trial called the JANUS Trial, which is specifically studying a protocol to optimize the chances of avoiding surgery, by adding a third chemotherapy drug to the FOLFOX regimen. The cocktail is then called FOLFIRINOX. I had heard about the JANUS trial during my research and a lot of opinion leaders in the field are very encouraged by it, but it never occured to me to see whether it was available in Phoenix. I spoke with his research staff, was given a copy of the consent form and was told they would follow up in the coming days. Now the fancy lobby and convenient checkin were nice, but would never lure me away from my current treatment center. But, a new treatment option available that could increase my chances of avoiding surgery really could. With a background in clinical research, I am very supportive of trials and am also familiar with the lingo. The two things that stood out to me about JANUS was that (a) it wasn't blinded, meaning that me and my care team would know what treatment I was getting and that (b) patients are randomized 50/50 with half of the patients getting the 3-drug FOLFIRINOX and the other half getting the 2-drug FOLFOX. Per my usual visits, this threw another monkeywrench into my decision making. Did I switch entire care centers for a 50% chance of getting this additional drug? Ugh! Luckily, I have a good friend who happens to work in cancer clinical research at the Mayo Clinic. I reached out to him and he let me know that the JANUS trial was also being done at Mayo. Do I switch my care to there?!? After sweating about this for the afternoon, I came to the smartest decision I have in a long time, and it's based on years of working with very good doctors. Here is the realization: it may not sound intuitive, basde on business practices and human teritorialism, but good doctors will give you up to another doctor/practice in a heartbeat if they think you will get better care there. I just witnessed this a couple months ago, where a doctor I work with referred his patient to a competing practice specifically because they were involved in a research trial that he was not. I put this realization into practice by contacting my own doctor and asking if he would recommend the JANUS trial. His answer immediately eased my mind and answered my questions about the trial design. The JANUS trial is not studying a new drug, cocktail or protocol. It is simply comparing two available treatment options. This is part of why the treatment arms don't need to be blinded. We hadn't revisited the chemo phase of my treatment yet, but I was probably going to be given FOLFIRINOX. This meant that I had a 100% chance of getting the 3-drug cocktail without having to switch practices. Phew! I still wanted to hear the results of the tumor board, which were nothing special, but ultimately thanked the research team and the other physician for their time and care and let them know my decision to stay where I was. 0️⃣
September 13, 2024
The fitting of the mold. I woke up in a cold sweat the day before my appointment to make my radiation mold. Was this mold internal?!? It couldn't be, right? They would have me do some sort of prep for that, right? When I showed up to the radiation facility, my mind was quickly put at ease. Yes, there was a physical mold, but it was of my lower legs, from the knee down, to make sure that I was in the exact same position every time I laid on their table. This was made using some sort of inflatable foam that molded itself around my legs and feet as it was pumped up. Somehow it was then hardened to perfectly keep its shape. After that was done, I was given and IV for constrast as a CT scan was taken of the target zone. This was the same contrast that makes you feel like you wet yourself. The CT scan was taken so that each time I go back for my treatments a new CT image (without contrast) could be compared to it to make sure they are zapping the right spot. My leg mold was then hung on a hanger and placed on a rack with a couple dozen others. Overall, this was a very quick and easy visit. 💉1️⃣
September 18, 2024
Doctor's visit the day before radiation begins? This visit was scheduled to answer any questions I had before I began the chemo-radiation part of my treatment. I didn't have any last minute questions, but had forgotten that my doctor had explained that I would be shipped the oral chemo that I was to take the days of my radiation. In my mind, I was going to confirm my prescription and pick it up on my way home from the appointment. When he asked if the pills had been delivered yet, I explained that I had forgotten that detail and that they had not yet been delivered. He immediately called the specialty pharmacy and spent 15 min on hold with them to make sure that the shipment was on its way. It was explained over the phone that the prior authorization for the medication had just been received (10 days after the prescription was ordered) and that the shipment would go out immediately and would be delivered in two days (Friday). My doctor then called the radiation oncologist to move my first radiation treatment to the following Monday. I was frustrated about the schedule change, but moreover very thankful that my doctor had done that legwork with the pharmacy and other doctor for me. He explained that these type of trip-ups are daily occurrances in cancer treatment. Why am I not surprised? 1️⃣
September 20, 2024
The oral chemo is delivered. The pills arrived in the mail as promised.
September 23, 2024
The real first day of radiation. Radiation treatments will be every weekday for 28 total treatments, the last one scheduled for October 31st. Because I've devoted a page specifically for Radiation, I will not provide daily updates about it, unless something noteworth happens. 0️⃣
October 3, 2024
Surgical second opinion. I had a consultation with the surgeon who was recommended as the top surgeon in Arizona for robotic rectal surgery. This doctor has done more of these cases than anyone else in the state and actually teaches the procedure. He confirmed most of what I had heard from the other surgeon and other doctors, but actually placed my chances of avoiding surgery at 20%. When I told him that I had been quoted 30%, he said that he didn't want to get my hopes up. Too late though, pal, my hopes are already up. There was a funny part of this visit too. When I originally made this appointment, I was told to prep with an enema because the surgeon would be doing a rectal exam. When I started radiation, though, I was told not to do the rectal exam. So I didn't prep. When I met the surgeon and shook his hand, I was so thankful for the radiation because his hands, and fingers, were huge! When we got towards the end of the visit and he asked me about the rectal exam, I told him I didn't prep and was instructed not to have one because of the surgery, but he pushed back, asking if I had any pain in the area from the radiation and if I felt comfortable doing the exam anyway. I quickly and vehemently refused the exam - and it was in no part due to anything having to do with radiation. I'm gonna put a 1️⃣ just from the thought of that exam!
October 10, 2024
Halfway through radiation. This was my 14th treatment of 28 and so far everything is going very smoothly. The side effects have been very mild - the capecitabine has caused some dry eyes, some acid reflux and some muscle tightness, but nothing that I've even had to take any medication for. The radiation has caused a little diarrhea, but again, nothing that I've had to take medication for or has affected my life. I've been working normally and even traveled twice in the first two weeks, including a quick one nighter in Vegas for a birthday celebration. It was the first time I've had a fully sober trip to Vegas and I really enjoyed it. My treatment hasn't forced me to stop drinking alcohol altogether, but with my GI tract being vombarded by chemo and radiation, it would now come with some horrible consequences. That being said, I was able to enjoy a signature cocktail at the hotel bar, toast my buddy's birthday with some good bourbon and have a martini with an amazing steak dinner. These were all enjoyed so much more without being dilluted by pounding beers in between them. I still lost my ass at the tables though, so nothing has changed there either. I've met thrice now with the radiation oncologist and everything is going to plan. My main question, and I'm sure one that a lot of people reading this are asking, is if and when we can tell if the tumor is shrinking. Unfortunately, we won't know until we do high resolution imaging after the chemo phase. The effects of the radiation are delayed, which is why it is done before the chemo. That way, the radiation takes effect while I'm undergoing the infused chemo. So there is no way to be sure the radiation is working, but judging by what I'm leaving behind in the toilet everyday, I think I've expelled at least a couple full tumors.0️⃣
October 14, 2024
Bloodwork and Visit with Medical Oncologist. I'm not exactly sure what bloodwork needs to be monitored during chemo radiation, but I'm assuming they're looking for signs of infection or an exaggerated response to the chemo pills. The bloodwork all came back normal, so this was a quick and easy visit. They drew the blood from my arm and not my port - the only reason I mention that is becasue I prepped my port with the lidocaine cream just in case and if anyone else is reading this page because they are also going through something similar, don't bother. My doctor wanted to get an update on my symptoms and go over the plan again. He mentioned that we can wait 2-4 weeks after the end of radiation to start the chemo infusions, depending on how I feel. As of now, I'm planning to start as soon as possible, making sure that my off week matches up with my planned Christmas travel.
October 25, 2024
Meeting with Radiation Oncologist. I have a weekly meeting with the radiation oncologist after my radiation treatment. This is usually a very quick meeting - less than 5 minutes - where the doctor simply asks me about any side effects I'm experiencing and reviews the upcoming schedule. At my meeting a couple weeks ago, I was told that at an upcoming visit I would be getting a repeat CT scan to make sure my anatomy hadn't changed. Remember, they use the original CT scan to line up my real time imaging for my daily treatment. Anyway, the repeat CT scan was moved from Friday, October 18th to Tuesday, October 22nd. Then, earlier this week, I was told that the scan was moved again to Tuesday, October 29th. My only question about this was that my final treatment is on October 31st, so is it necessary to get a new CT scan for the last 2-3 treatments. When I asked about this, I was told that the final three treatments are called a "Rectal Boost" and are different than my other treatments. I have no idea how they're different, but I'll ask next week. So I need the new CT for the Rectal Boost, but they don't know if they can do a same-day turnaround so that the new CT resulat will be ready in time to keep me on schedule. I guess we'll find out on Monday...0️⃣
October 28, 2024
I was able to flag down the radiation oncologist before my radiation treatment and he explained that during the "rectal boost", the same amount of energy is used as a typical treatment, but instead of a wide treatment area which includes my entire pelvis, the rectum is specifically focused on. Radiation of the wider area will treat the surrounding lymph nodes and any locally spread cancer, but the rectal boost will focus on the primary tumor. He also explained that the CT scan needed for the rectal boost was not necessary in my case because they could tell from my daily imaging that my anatomy had not changed and that the measurements from the original CT would be adequate. 0️⃣
October 31, 2024
Last day of radiation! I thought of a fitting Halloween costume this year and dressed up as The Hulk for my final treatment. I also brought food for the staff as a "Thank You" for being so wonderful over the past month. There were a number of times where my visit had to be moved at the last minute to fit my schedule and the staff was accommodating every single time. Besides the diarrhea, I'm amazed at how normal I still feel, after completing the portion of my treatment that was originally trying to be avoided at any cost. 0️⃣
November 4, 2024
Follow Up with my medical oncologist. This routine visit turned out to be very interesting and informative. First, there were a number of topics I wanted to questions I had for him: 1. I had an upcoming dental appointment and I know that dental work is forbidden during chemotherapy. If I needed a cavity filled or some other minor fix, could it be done? Answer: yes, dental work was fine between radiation and chemo. 2. After conversations with cardiologists who I work with, it has been mentioned that some patients are prescribed a blood thinner to keep their port open. Also, should I proactively get any pre-chemo cardiac testing done or establish with a cardiologist or any other specialist? Answer: no blood thinner needed and this chemo regimen should have little to no effect on my heart. 3. While on chemo, do I need to avoid contact with my breastfeeding wife and/or use a separate bathroom from my wife/kids? Answer: just avoid swapping bodily fluids with anyone while on chemo.
After that, we discussed my chemo regimen. As mentioned previously, I am planning on following the JANUS Trial protocol of FOLFIRINOX which adds an additional agent, Irinotecan, to the two drugs (5-Fluorouracil and Oxaliplatin) in the standard FOLFOX treatment. However, my doctor explained that the typical standard chemo for rectal cancer, if chemoradiation is done firt, is actually CAPOX, which is the same drug Capcitabine, that I had been taking during radiation, along with the Oxaliplatin. In my case, we are actually combining a couple studies (OPRA and JANUS) which is not the typical standard of care, but my doctor said that he had been swayed due to my insistence on avoiding surgery. I mention this for two reasons. First, if this website/blog is ever read in the future by patients who are going through rectal cancer, and your doctor has chosen another treatment pathway, I don't want you to assume that my treatment plan is the "correct" or even standard one. Secondly, I feel bad that my input has changed my doctor's course of action. We had a discussion about this and he explained that the FOLFIRINOX is a much more aggressive chemo and there is no medical literature supporting higher success rates with it, but it is being studied for its potential effectiveness in avoiding surgery, so if that is what I want then he'll support it. I second guessed my decision for a moment, but decided to stay the course and be as aggressive as possible. He then explained that with FOLFIRINOX, he would have to add a drug, Neulasta, to boost my white blood cells and also add Loratidine (Claritin) for bone pain. I don't know what to expect from "bone pain", but it doesn't sound fun. We then walked over to the pharmacist and he explained to her that we would be going "off plan" and using the FOLFIRINOX/Neulasta, which she had no issue with.
My doctor was quite surprised at how well I handled the radiation. He told me he expected me to be in much worse condition and to need about a month off before we started chemo. I flexed and told him I was strong like bull and wanted to start chemo ASAP. So we scheduled if to start Monday, November 18th after a preliminary blood draw and educational session on the 15th. 0️⃣
November 15, 2024
Blood Draw. All of my bloodwark was within normal limits, so we're good to start chemo on Monday!💉1️⃣
November 18, 2024
First Infusion Day. The infusion center is in the same office as my doctor's office, so I checked in as usual and was called back with a number of other patients. I had been warned on Friday that the additional medication in my cocktail, Irinotecan, can cause diarrhea (it is nicknamed "I run to the can"), so I chose the infusion chair nearest the bathroom. My wife met me there for a while and we worked on our respective computers. I was given a number of IV bags that were infused through my port, starting with a bag of anti-nausea medication. Once that bag was done, the rest of the FOLFOX and Irinotecan were hooked up and infused over the next number of hours. The entire session lasted about 6 hours and was pretty uneventful. I didn't have crazy diarrhea, though I did go to the bathroom 4-5 times. I also didn't really feel sick except one wave of nausea right around 3PM. I had only been eating light snacks through the day and thought I could handle a full meal, so my wife grabbed me some vegetable lasagna from the hospital cafeteria. This was a bad idea, as a couple bites in I felt very nauseated. This lasted several minutes, but eventually subsided and I never puked. Another side effect I noticed was that toward the end of the session, my tongue and jaw became stiff and difficult to use. It made talking a little challenging, but there was no issue swallowing, so no one was too concerned. When the infusion bags finished, a final bag was loaded into a portable pump, which I was given to wear home over the next couple of days. The pump is about the length of a loaf of bread and about as thick as a loaf of bread that is packed in its usual way at checkout at the grocery store - squashed by a gallon of milk - so its about 16" x 2". It is fitted nicely into a black fanny which I can wear around my waist or over my shoulder. Once a minute, there is a barely-audible buzz where a tiny bit of chemo is pumped into me. This happens over the next 46 hours. The bag of medicine is just a little bigger than a bag of fruit snacks, so each squirt must be really minute. Sleeping while hooked up to the bag was a bit annoying, but I figured it out. 💉2️⃣
November 19, 2024
First full day with the chemo pump. I was fairly nervous about my first day with the pump, mostly because I had a busy day of work ahead of me, and I was worried about my energy level. I was also wondering how many people would notice my new fashion accessory and would need an explanation. Well, I couldn't have had a more pleasant surprise for the day. On the two days that I wear the pump, I start my day with 2 x 4mg pills of a steroid called dexamethazone. The pills are tiny, but apparently 8mg of steroid is a lot. Within an hour of taking these pills, I felt AMAZING! Like, better than I've felt in years! I seriously felt ten years younger both physically and mentally. My workday went great and I started planning the rest of my life as a roid-head. It literally felt so good that it made me realize how much decline I've had over the years which was really a bit depressing. I'm not a huge prude, but don't have any real experience with recreational or prescription drugs that can make you feel this way, but after that day, I completely get it. Whether it's testosterone supplements or nose candy, I have a new appreciation of how that feeling would be addictive. I better stay away. Maybe.
November 20, 2024
Day 2 with the pump. Another great day with my new buddy dexamethazone. I was actually late in returning the pump because, among other things, I decided it was a great day to start hanging Christmas lights. When I got back to the infusion center, the unhooking process only took a couple minutes. Over the next couple of days I felt fine, but not great, like I had a touch of the flu or something. I'll try to verbalize that in the Side Effects section though.
November 25, 2024
Follow Up Telemedicine Visit With Radiation Oncologist. This was just a quick follow up with my radiation oncologist to go over any lingering side effects of the radiation. The only thing that I had to report is that my blast door gets a bit itchy. I was told that this may or may not subside, so if you see me walking around and suddenly start twerking a little bit, you'll know whats up.
November 27, 2024
Lab Draw. I went back to the infusion center for a quick lab draw through my port, I'm gussing to check how badly the chemo messed with my system. Most tests came back normal, but my white blood cell count was low. Interestingly, I found out that the additional medicine, Neulasta, that was prescribed to stimulate white blood cell production, had been denied by my insurance - probably becuase my labs were so normal to begin with. The doctor didn't seemed concerned about the current levels and said that we could re-apply for the Neulasta if needed.
December 2, 2024
First Day of Round 2. Another infusion day in the chair which was very similar to the first round. I had the same wave of nausea in the afternoon, so I guess it wasn't related to the food, and had the same tongue and jaw issue towards the end of the session. I had a really nice surprise when my brother-in-law joined me for most of the session. He was coming to visit for a couple days anyway, but he rushed from the airport to make sure he was there for me - very touching. The sessions in the chair definitely fly by when there is someone there with you, especially if you're a longwinded chatterbox like me (and my brother-in law, haha). If you're not, the first two sessions so far have been a great time to get caught up on work, personal emails, planning, etc. as well.
December 3-4, 2024
Round 2 With The Pump. I was actually excited for these days, looking forward to another couple of days feeling like Superman on my steroids. I even scheduled a game of pickleball with my brother-in-law and some friends. Unfortunately, I didn't have the same response to the dexamethazone this time around. I didn't feel particularly lousy, but just not great. This didn't slow me down, though, and I was able to enjoy the week and visits from my family and friends. Luckily, the pickleball game was canceled, but I'm sure I would have been able to play. I may have even overdid it a little this week, though, becuase I was exhausted by the end of the week.
December 6-7, 2024
Big XXII Championship Game. I was invited to go to Dallas for the Big XXII Championship Game and got to see my ASU Sun Devils absolutely destroy Iowa State. I would have normally be drinking heavilty at an event like this, but was able to enjoy it on another level completely sober. This wasn't really treatment related, so I'll keep this entry short, but I owe a huge thank you to some wonderful neighbors for an amazing experience!
December 8-13, 2024
Off Week. This was my recovery week, but honestly I didn't feel very well this week. This could be partly due to the fact that other people in my household were also sick, but I was definitely feeling sick. I also noticed that my hair has started falling out. It's not coming out in clumps, but in the shower or when I'm styling it in the morning, there is definitely a lot of strands that are coming out in my hands. I've also noticed that my eyesight is getting worse, particularly my far-sightedness. I've always had great pride in my eyesight, never needing glasses and being able to read signs/words at great distances, but it looks like a future fighter pilot career may now be out of the question. I've also noticed that the peripheral neuropathy - the sensitivity to cold, causing pins and needles in my hands, feet and throat, lingered longer than the first round.
December 13, 2024
Pre-Round 3 Lab Draw. Well the chemo is definitely taking its toll. My white blood cell count is pretty low and apparently my "liver is swollen". This is probably at least a partial explanation of why I don't feel very well. Again, it's not terrible and not interfering with my work, home, or (very limited) social life, but I'm guessing there will be a progressive decline in my health with each treatment, which I'm not looking forward to.
December 16, 2024
First Day of Round 3. Another day in the chair and it was very similar to the past two. Everything goes very smooth for the first number of hours, but once the Irincotecan and FOLFOX are added, I start getting some nausea and the tongue and mouth thing. This was also the first time I broke into my Compazine prescription for "break through nausea". I also broke into my Zofran when I got home that evening and was carrying a barf bag in my pocket just in case. I didn't feel like I could eat anything, but got some soup down later in the evening. I also got very little sleep that night.
December 17-18, 2024
Round 3 with the Pump. The dexamethazone definitely helps and none of my symptoms are keeping me away from any work or activities, but I don't feel great. In trying to explain the nausea I'm feeling, on a scale of 1-10, where 10 is the feeling where you've drank too much and come home, lay down and have a foot on the ground to keep from spinning OR that cramping feeling when you get food poisoning and you are positive you'll be throwing up A LOT and are just wating for when - I'm at a 3 or 4. My stomach feels "off" and there is a bad taste in my mouth and throat, but I'm not sick.
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