The Day to Day of Chemo

Posted on November 22, 2020 by Jelena

More Details on Going Through FOLFOX Chemo

Welcome to Life as a Cancer Survivor. In today’s video, I’m going to talk all about what it’s like to go through IV chemotherapy. My name is Jelena and I went through eight rounds of FOLFOX chemotherapy to treat my Stage Three Rectal Cancer diagnosis. I was diagnosed with Rectal Cancer in May of 2016 and began the first of my eight rounds of IV chemotherapy in December of 2016. Click the like button down here below if you’re ready to hear about what it’s like to go through multiple rounds of chemotherapy.

A few videos ago I talked about the side effects that you could possibly experience while on chemo and the ones that I experienced. So in this video, I’m going to talk more about just the day-to-day happenings of what it really is like to go through chemotherapy. Let me start out with being at the cancer center for your infusion. Usually, there’s a special infusion room and there’s a nurse’s station in the middle of this large infusion room. At mine they kind of had it divided up into little “rooms” where there were half walls and within each of those rooms, there were about four to five chairs that you could sit at. Each of those chairs reclined, some of them had TVs at them, and others had an extra chair next to them so that a visitor could sit next to you during your infusion. I always got a pillow and put it behind my back but I would bring with me my own super cozy and soft blanket that my husband, John, had bought me. I would bring with me a pair of cozy slipper socks and I would take my shoes off and just put those slipper socks on since I was there at the infusion for three hours. I would also bring water, either snacks or a lunch depending on what time my infusion was, my phone of course, and then a tablet and headphones. John came with me for many of my infusions but he would bring his work laptop with him and many times he had meetings that he had to attend so I couldn’t rely on him as my sole source of entertainment. So on my tablet, I downloaded games, I downloaded some tv-shows and used those to keep me occupied and that’s where the headphones came in handy for listening to the tv shows. I also let my mom, sister, aunt, and one of my cousins know what time my infusions were and they would keep me occupied in a group text with just funny texts or gossip. Personally, I could never fall asleep during the infusions.

I mentioned that you’re there for about three hours for, you know, for your infusion. I had a port implanted which is a device that goes into your chest and it has a small tube that comes out of it that goes into one of your large veins. Once you’re hooked up to the IV and the chemo pumps through a needle that’s inserted into your port you’re not stuck in that chair the entire time. The nurses showed me how to unplug the chemo pump because it had a battery in it as well so it could run for a little while without being plugged in. So they showed me how to unplug it and take the pole with me to the bathroom because I had to go multiple times during the infusion. At my cancer center, they had three to four individual bathrooms that were large, accessible-sized bathrooms so even with you and that chemo pole you didn’t feel cramped inside the bathroom at all and had tons of room to maneuver around in there.

Once I was finished with the in-person chemotherapy, I got disconnected from that and connected to a chemo pump that would dispense chemo to me for the next 46 hours. They gave me a fanny pack and an over-the-shoulder bag that I could choose from to put that pump into for carrying it around for the next two days. I chose the over-the-shoulder bag because it was more comfortable and the fanny pack was actually too big on me even when I pulled it as small as it could get it was still too large. So then once I got home I would always immediately go to bed and take a nap for at least two hours. You’ve been through a lot physically and mentally at chemo, so most people that I know go and take a nap as soon as they get home. The headboard of my bed has a post on the end of it so I would hang the bag on that and tuck the hose into the bag as much as I could so that I didn’t have to worry about getting tangled up in it and I didn’t have to worry about my cats chewing on that hose. The hose was about three feet or so long so there’s a lot that you can work with to figure out where exactly you want to put the pump when you’re sleeping to be the most comfortable.

So for the next two days, that pump went everywhere with me. I felt pretty cruddy but I tried to not use that as an excuse to not do anything. The bag fits nicely into the water bottle holders on a treadmill so for my first rounds of chemo I would just put the pump in there and I would go to the gym and I would run. As I got further along in treatment I was too tired to run so I would only walk, and I would either walk outside or on the treadmill at the gym. I would only walk outside if it was at least 50 degrees because I was going through chemo in the winter in Colorado and Oxaliplatin, one of the drugs that’s in FOLFOX, it causes extreme cold sensitivity and if I would go outside and it was colder than about 50 or if the wind was blowing strongly it felt like needles were stabbing me in the face constantly. So I wouldn’t subject myself to that I would just go to the gym and walk if it was cold or windy.

I asked the nurses at the cancer center if it was okay if I showered while I had the chemo pump attached to me and they told me that it was fine as long as I didn’t get the pump wet. They said that the dressing that was over the needle was waterproof so it was supposed to keep any water and sweat out and away from where the needle was. So to shower I would get a hanger, I used a metal hanger because it’s bendy and so I could bend it to whatever angle I needed it, so I would hang the over-the-shoulder bag on the hanger, and then place the hanger on the outside of my shower so the pump was on the outside and since you’ve got a long hose I would just untuck the hose most of the way and I showered with the chemo pump on. I wouldn’t scrub super hard around where the, um, the dressing was I would just soap up and then just let the soap flow over it but I never got it wet, never had any problems uh with any water getting in and doing anything to my port.

For sleeping at night I was worried about two things. One, that I was gonna get tangled up in the hose, and two that I was gonna forget that I had the pump attached to me and would get up and start walking away and get yanked by the pump still hanging on my headboard. As I mentioned earlier, I would hang my over-the-shoulder bag on the post of my headboard and then tuck the hose in as much as I could, that seemed to work and I never got tangled up in the hose when I was sleeping. As far as waking up and forgetting that I had the pump attached to me, whenever I’d wake up in the middle of the night and need to go to the bathroom I always wake up and I just lay there for a minute or two because I’m like, “Oh do I really have to get up or can I fall back asleep?” Of course, I could never fall back asleep but while I’m laying there and debating how long I’m gonna wait before I get out of bed, you would hear the pump disperse the chemo once or twice so that would be my reminder, “Oh yeah I’ve got that bag over here I need to grab that and take that with me before I go to the bathroom.” And in case you’re wondering what that pump sounds like each time that it dispenses the chemo, to me it sounds most like one of those automatic hand sanitizer dispensers put your hand under and it just dispenses um only it’s a little bit quieter than one of those.

On the days that my pump wasn’t attached, I would occasionally try lifting weights while I was at the gym. There were many movements that I didn’t do because they were too painful from the port location. First off I couldn’t lift my arm more than shoulder height without it being very painful on my at my port so that meant no jumping jacks or tricep stretches like where you do this it hurt to bring my arm up that high. It was also painful to do chest presses or stretches where you would take your arm across your body. Since I wasn’t hardcore into weightlifting I just did other exercises or avoided those stretches that hurt the port site.

I went into the cancer center on Tuesdays for my infusion, every other Tuesday to be exact, um then I would go back on Thursday right before they closed to get the pump detached from me. I would usually feel pretty crappy until Saturday or Sunday. Once the weekend hit the cold sensitivity started easing up so I wouldn’t have to warm up all of my beverages, the tingling in my feet would ease up, and I stopped my anti-nausea medications so the nausea was gone and I wasn’t as sleepy. The following week I would really start bouncing back. My energy increased and that just general crappy feeling started easing up. Then over the next weekend, I felt almost back to normal just in time for the infusion to get started again and that cycle to start on Tuesday.

My cancer center gave out vouchers, if you asked them, that were good for a season ski pass at Loveland Ski Area for only $89. Once you went to Loveland and got that pass you could also use it at multiple partner resorts to get a limited number of free lift tickets at those places as well. So the weekend right before my Tuesday infusion we went skiing multiple times. I would get colder than I usually would so I would have to bundle up with extra layers and covered up everything so there was pretty much no skin showing. I also invested in some of the hand/foot warmers and would put those in my boots and in my gloves to keep me warm, and even to this day if we’re doing anything outdoorsy in the cold I’d take those foot and hand warmers with me.

I did eight rounds of FOLFOX, so as I got further and further along in treatment the fatigue really started setting in and those afternoon naps started becoming almost a daily thing. My appetite went down but I was still eating okay when I went in for that last round of chemo. My hair, it definitely thinned out even my eyebrows and my eyelashes did but I started out with pretty thick hair, so to anybody that wasn’t my family it wasn’t really super noticeable. It was tough, but I knew that going through these eight rounds of FOLFOX would give me the best chance at living a long, cancer-free life so I just kept that finish line in sight. I just had to get through this and then treatment would be done.

Please click on the like button down here if this video gave you a better idea of what it’s like to go through chemotherapy. Also make sure that you’ve hit the subscribe button and clicked on the bell so you’ll be notified when all my future videos are posted. I know you don’t want to miss any of them. Thank you guys so much for watching!

*This video was originally published on July 31, 2020.

Now What?

Posted on November 19, 2020November 19, 2020 by Jelena

My Cancer Treatment Is Over, Now What?

You’ve finished treatment for your cancer and your oncologist has declared that you have no evidence of the disease. Now what? Stay tuned because in this video I’ll be talking about what to expect next, from the follow-up appointments to treatment recovery. If you’re new here I want to welcome you to my channel Life as a Cancer Survivor. My name is Jelena, and in May of 2016 I was diagnosed with stage 3 rectal cancer. For my treatment, I went through 28 days of radiation and oral chemotherapy, I had a Lower Anterior resection or LAR surgery, which is where they remove your colon/rectum and I had an ileostomy created during that surgery, I went through eight rounds of the IV chemotherapy FOLFOX, and had my ileostomy reversed. So let’s get on with what happens after that treatment is over with.

My last round of IV chemotherapy was on March 28, 2017, and I was disconnected from the pump on March 30th, and on that day I was officially done with chemo. My treatment with my oncologist was complete so he basically said, “Bye, see you in three months!” When you’ve gotten used to going to the cancer center every two weeks for blood draws, pre-chemo appointments, chemotherapy, pump detachments, it’s a little weird knowing that you don’t have to go back for three months. Yes, I still had my ileostomy reversal surgery in two months but I didn’t have any more oncology appointments. No more visits to the cancer center. It’s a little nerve-wracking not being under constant surveillance and not actively working on killing cancer in your body. Now it’s time to attempt to heal for good.

The National Comprehensive Cancer Network has guidelines published for guidance on what a recommended follow-up schedule is for colorectal cancer patients that were diagnosed from stage one through stage four. Here’s the table that I’ll walk you through. There’s one column for patients that were diagnosed Stage one then another for Stage two, three, and four patients. For stage one, if you aren’t having any symptoms then the only recommended follow-up treatment is a colonoscopy after one year. If that one comes out clean, another one in three years, and if that one is clean another one in five years.

The follow-up schedule for patients that are diagnosed Stage 2-4 is much more comprehensive. First, we’ll start out with the appointment schedule with your oncologist. The first two years post-treatment is an appointment with your oncologist every three to six months and having your blood drawn every three to six months to get your CEA checked. CEA stands for carcinoembryonic antigen and it’s a protein in your body that in many people rises when cancer is present. It’s the least invasive and safest way to frequently check patients for whether or not the cancer has returned. After those first two years then the CEA checks and appointments get spread out every six months for the next three years. Since I was diagnosed at a young age my oncologist preferred to see me every three months for that first year and then he only moved it to every four months for years 2, 3, and 4. This past August was my most recent appointment with my oncologist and since my CEA has been consistently low and my CT scans have shown nothing, this was the first time that he felt comfortable spreading out my appointments so that they would be every six months.

Then for patients that are diagnosed at Stage 2 or 3, the follow-up appointment schedule for CT scans is every 6 to 12 months for 5 years. I had my first CT scan the day after I finished chemotherapy because I was hospitalized for an intestinal blockage, so that was kind of unintended, then I had another one 6 months after that and both of those they came back showing no cancer and my CEA agreed with that, so my oncologist then moved my CT scan schedule to once every year. For Stage 4 patients it’s recommended that you get a CT scan every 3-6 months for the first two years and then every 6-12 months for the next three years.

The final part of the follow-up schedule is a colonoscopy and it’s the same whether you were diagnosed at Stage 2 all the way through 4. If you didn’t have a colonoscopy at diagnosis, then it’s recommended that you get one 3-6 months after your treatment ends. For those that did get a colonoscopy before treatment, you wait a year for that first one. For me, I had mine one year after my surgery which was six months after my treatment ended. If nothing is found during the colonoscopy then you get to wait three years before you have to go in for your next one. If an advanced adenoma is found, which is basically a pre-cancerous polyp, then you only get to wait one year before the next colonoscopy. Of course, if the cancer returns then you stop this and you get back into treatment but this is what your schedule is going to look like for the next five years. Five years is the magic number because that’s when most cancer recurrences happen, so if you make it past that five-year mark without having any cancer detected then you’re done with your follow-up schedule. You just go in for annual physicals and you need to still follow what a non-cancer patient would follow as far as colonoscopy schedules go.

So you’ve got this follow-up schedule that sounds pretty intense but compared to being in the midst of cancer treatment it seems like nothing. You have to shift from actively going to appointments to kill the cancer in your body and having doctors and treatments rule your life to supposedly being in charge of your life again and going back to normal. I say supposedly because cancer treatment has most likely made some permanent changes to your body and that old normal can never be reached again. For me, I reached that finish line of treatment with scars from surgery, part of my colon and rectum missing, over a dozen lymph nodes gone, thinning hair, no menstrual cycle, neuropathy in my feet that caused constant tingling, and after the ileostomy reversal surgery, I was left with frequent bowel movements that required multiple medications to control. Three years after treatment has ended I’m still struggling with a white blood cell count that’s below normal and lymphocytes that are right at the bottom of the normal range which is great to have in the midst of a global pandemic. When I started treatment I naively thought that after treatment was done I would just magically be back to normal. Well, you don’t magically and instantly heal after having gone through multiple rounds of chemotherapy. There was no way that I felt like my pre-cancer self.

The mental game of trying to not wonder whether or not the cancer is growing back in between appointments can be tough. It’s not something that I thought about a whole lot, but it hit me front and center anytime I had to go into the cancer center to get my blood drawn and/or for scans. There’s actually a word for it in the cancer community and it’s called scanxiety. After attempting to move on with life you’re thrust back into the cancer center getting poked, prodded, and scanned. Your mind goes back to when you were first diagnosed, that uncertainty of how much cancer has ravaged through your body and wondering if it’s doing it again. After a few good scans and CEA test results you’d think that the scanxiety would let up a little. For me it did a little, but each test is different. Some tests don’t bother me at all now and other times just talking about it like right now has created a ball in my stomach. There isn’t just one magical thing that makes it easier either, because like I mentioned sometimes I feel the scanxiety and other times I don’t. You just have to come up with your own coping mechanisms of what helps to calm your fears a little bit. Fresh air, exercise, meditation, journaling, medication, alcohol, and marijuana are the most popular ways to cope and it’s usually not just one but a combination that works the best.

Another battle that you have to deal with in between your follow-up tests is your mind constantly questioning whether or not any new thing that’s happening in your body is a result of the cancer returning. It doesn’t help that a lot of the side effects from cancer treatment, like changes in your bowel habits and fatigue, are signs that colorectal cancer is returning. Your bowels do a lot of changing and adjusting after treatment so with each change you wonder whether it is a result of the chemotherapy or your ileostomy reversal surgery or if it’s the cancer returning.

These things are exactly why you shouldn’t assume that things will just go back to normal and your mental health will be perfectly fine. You’ve been through a traumatic event and it takes time to heal from trauma. It doesn’t mean that you’re weak at all. Your body has betrayed you so feelings of anger, sadness, and resentment are totally normal. If you’re one of the lucky ones that survived a diagnosis and treatment, happiness and gratefulness are totally normal, but survivor’s guilt also is if you’ve made friends along the way and they haven’t been as fortunate as you.

So what can you expect post-cancer treatment? Well, the follow-up schedule is one concrete thing that you can count on. Beyond that, the physical and mental side effects can ebb and flow for years. Try to do your best to make your health a priority so that you can make it through life post-treatment. My next live stream will be on Thursday, October 15th at 7 pm Mountain Time. So if one of those things that’s helping you out is watching my videos to help you feel less alone through your cancer diagnosis make sure that you’ve clicked the subscribe button and hit the bell so that you’ll receive the notifications when I’m going live and when my future videos are posted. Go on and click the like button down there too if you enjoyed this video. Thanks for watching.

*This video was originally published on October 9, 2020

FOLFOX Chemo

Posted on November 6, 2020October 19, 2022 by Jelena

What is FOLFOX Chemotherapy?

Welcome back to Life as a Cancer Survivor. In this video, I’ll talk about the basics of the IV chemotherapy FOLFOX, which is commonly given for Stage 3 Rectal Cancer patients. I’ll talk about what the drugs are that are in it, how they’re administered, and the side effects that I experienced. In another video, I’ll dive even deeper into those side effects and also give you hints on how I coped with a lot of those side effects. My name is Jelena and I was diagnosed with Stage 3 Rectal Cancer in May of 2016.

So a week and a half before I was scheduled to begin chemotherapy I had another chemo training class which was just an appointment with my Oncologist’s Physician Assistant. So at that appointment, I got this folder of information which included my current medication list, a packet of information on FOLFOX, and a separate handout just on oxaliplatin and neuropathy. So the first of those sheets that I’ll go over is my current medication list.

The only thing that I was taking at the time was vitamin D for a deficiency that I had before I was diagnosed with cancer. But in addition to that, they added three more medications to that list. The first one was Zofran, an anti-nausea medication, and that one I was supposed to take just a few hours after I got home from my chemotherapy infusions that evening to help keep the nausea at bay and under control. And I was supposed to take that for 2 to 3 days following the infusion. The second prescription was for Compazine and that one is also an anti-nausea medication and that one I was supposed to use for breakthrough nausea so if in between the doses of Zofran it wasn’t enough I was supposed to take Compazine as an additional tool in my box to try and keep the nausea under control. Then the third prescription was for lidocaine which is a numbing cream. I spoke about this one in my port video, I was supposed to put the cream over the port site before a needle was inserted into it for blood draws or for chemotherapy so that it was numb and I wouldn’t feel it at all.

The next packet of information I received was all about FOLFOX, the IV chemotherapy I was going to be receiving. FOLFOX is actually 3 different drugs mixed together. It is 5-fluorouracil, also known as 5-FU, oxaliplatin, and leucovorin. The 5-FU and oxaliplatin are chemotherapy drugs that prevent the division and growth of cancer cells and causes them to shrink and die. The leucovorin helps increase the efficiency or the efficacy of the 5-FU. When I would go in for chemotherapy infusions, all three drugs would be given to me over the span of about 3 hours plus anti-nausea medications at the very beginning. The way it was divided up, at the very beginning for the first 15 to 20 minutes would just be an infusion of anti-nausea meds, then for the next two to two and a half hours it was the chemotherapy drugs, then they would disconnect me from that and they would connect a portable pump to me through the port and I would take that pump home and over the next two days I would continue to receive an infusion of 5-FU. Then after those 2 days I would return to the cancer center and they would disconnect me from the pump. That’s what I had to look forward to every two weeks for 8 cycles.

On the consent form that I had to sign, let me show you it has a long list of just general chemotherapy side-effects that no matter what chemo you’re on you could experience. And those are just for general chemo. In addition to that, there’s also information in the FOLFOX packet it had even more side effects that were specific to FOLFOX. Now here’s the highlighted list of all of the side effects from that consent form that I experienced: diarrhea, fatigue, hair loss. I didn’t lose all of my hair but it thinned quite a bit, loss of appetite, low platelet count, low white count, menstrual irregularities, nausea, numbness and tingling in extremities, and weight loss. From the FOLFOX packet, it listed even more side effects and it separated them out based on whether they were common which means 25% or more of patients experienced it, down two rare which means less than 5% experienced it. From that list, I experienced: throat pain, difficulty swallowing or eating, muscle cramps, metallic or medicinal taste, and trouble sleeping.

Then I also got these two handouts on oxaliplatin and neuropathy. The oxaliplatin cancause nerve damage in the extremities, so your hands and your feet, and that nerve damage is what can cause neuropathy. In case you’re unfamiliar with what neuropathy is, it’s defined as a tingling, weakness, burning, and pain in the hands and the feet. A common cause is diabetes, but many chemotherapies including oxaliplatin can cause neuropathy as well. It can start as soon as during your chemotherapy infusion, but typically it will go away after a few days. I got tingling in both my hands and in my feet but the hands they would get better within a few hours after the infusion. The feet however, that tingling turned into some burning and pain which lasted two years after I finished my last infusion. The neuropathy is definitely something that you want to keep your doctor posted on. Think of it kind of like radiation burns. The worse they get, the harder it is to recover from, and they don’t go away after you finish treatment. Other weird neuropathy side effects that you can experience with the oxaliplatin is just a general extreme cold sensitivity. As you can see in this picture, I had a water bottle with me at my very firstinfusion and I always brought one with me because I would be there for a few hours. Within about a half-hour of starting the chemo part of the infusion the first side effect kicked in. When I took a sip from my water bottle when I swallowed it felt like I was swallowing glass. It startled me because I wasn’t quite sure what to expect with that cold sensitivity. From that point, until about 5 days after my infusion, it was no cool and not even room temperature drinks, it all had to be warm otherwise it feel like the glass going through my throat when I would swallow.

The handouts also gave multiple other tips or hints on how to deal with the cold sensitivity. So it notes in there make sure that everything that you eat or drink is at room temperature or warm, if you feel cold put on a sweater or get under a blanket, duh, I think that’s obvious for anybody that’s not even on chemotherapy. Cover up when you’re outdoors, always wear a scarf over your nose and your mouth, avoid direct exposure to air conditioning, which, um, I could avoid air conditioning but the extreme cold was hard to avoid because I was getting treatment in winter in Colorado, don’t use an ice pack on any part of your body, keep a pair of gloves in the kitchen for handling things in the refrigerator, and then also keep socks or slippers nearby all the time for walking on tile and linoleum, wood floors also.

There’s also a thing that many people call “first bite syndrome,” which you’ll most likely experience after each infusion. It always happened to me and it was always the first bite that I took of something after I left the cancer center. It was like a really stiffness and pain in the jaw but it only happened for that very first bite. It made a kind of difficult to chew the first bite but then after you swallowed it and took another bite everything was fine so it was really strange and weird but that’s something to also watch out for.

For me, the oxaliplatin is what caused the worst of the side effects. How do I know this? Well, for my final treatment number eight they left the oxaliplatin out completely because the tingling in my feet was getting worse so instead of damaging the nerves even more they left it out. After that infusion I didn’t have any of the extreme cold sensitivity side effects like I had had after other infusions.

The schedule of appointments went like this around each infusion. A day or two before I would go in to get my blood drawn. I would go down to the cancer center for this because I wanted the nurses down there to access my port for it because I could numb the port and I wouldn’t feel it, but also within a half-hour to an hour after the blood draw appointment (because they do it by appointment at the cancer center) I would have an appointment with my Oncologist’s Physician Assistant to go over those results. So it was just easier to have it all done right there and at that appointment with the PA she would go over the blood test results, basically just summarizing the things that they were looking at to make sure that my body was healthy enough to receive chemo the next day. So the platelets were the one thing that dropped a lot for me, so that was the one thing they would keep an eye on. The platelets are what’s in your blood that cause it to clot, so when your platelets get really low even a small cut could turn into an emergency because the blood won’t clot and it won’t stop bleeding.

Then the following day I would come back for chemo. I went back and got to choosewhatever chair I wanted in there so I would always go over into the corner by the window so that I could look out at the mountains. I got settled in for 3 hours or so and then got the pump attached to me to take home. Here’s a picture of what it looked like and it came with its own set of instructions just in case you needed to know how to work it. All I needed to know how to do was how to shut it off when it started beeping when the chemo was done. Then I was also sent home with this Hazmat kit. It was very comforting to know that what they were injecting into me needed cleaned up with a Hazmat kit. Then they also gave me both an over-the-shoulder bag or a fanny pack that I could choose from to where the pump in. I chose the over-the-shoulder bag because the fanny pack was way too big around my waist and it was a fanny pack. So I wore that pump for 2 days. My chemotherapy was always on Tuesdays so I would go in at the end of the day on Thursdays, I would have to go back to the cancer center to get the pump disconnected from me. This was my schedule every other week for 8 cycles.

I hope you learned a little bit more about what FOLFOX is and the basics of IV chemotherapy. I’m going to do a future video on more specifics of the side effects that I experienced and how I coped with them so make sure that you’re subscribed so you don’t miss that video. In my previous video, I talked about what it was like to get a port placed, so if you missed that one you can click here and that’ll take your right over to that video. Make sure that you click on the like button though if you enjoyed this video and please share it with anybody that you think also might enjoy it. Thank you guys so much for all your support and thanks for watching.

*This video was originally published on May 22, 2020