Chemo is supposed to get more difficult each time, but this last one was a piece of cake. I have a bit of numbness in my fingers and toes (this is normal), but other than that, none of the expected pain happened. Weird.
Today, I’m in for a bone scan to make sure no cancer has spread to my bones. Because the type of cancer is as aggressive as it gets, my oncologist wanted to monitor me closely to be safe. I went in at 10:00 this morning to get injected with radioactive dye, then I left to get some work done from the car, and drink my coffee. I’ll be going back shortly for the actual scan, which will take about 30 minutes.
The scan itself is pretty boring. They will restrain my hands and feet so I don’t move and mess up the image, then the machine will make a very slow pass over my entire body over about 30 minutes. If there is any cancer in my bones (hopefully not), the radioactive dye will collect there and it would show up on the scan. The scan also picks up old injuries, so I had to give the tech a list so they know what to expect on the scan.
Other than that, I have a couple of meetings later, and I’ll probably watch Game of Thrones this evening.
When I started this blog, I assumed I would document all the symptoms of chemo and feeling miserable. Was I ever wrong. During the AC portion of the chemo, I had one Sunday every two weeks when I felt like I had a hangover without nausea. Then I was almost back to normal for work on Monday morning. Other than that, it was life as usual. Working out, playing video games, and whatever else we do during COVID-19.
I have completed all four rounds of AC chemo, and I have done two of the four rounds of Paclitaxel (Taxol). I have also started getting Herceptin, which I will continue on with for a year after chemo is over. The two types of chemo are markedly different. Where AC chemo makes you feel like someone tried to poison you and didn’t quite manage it, Taxol is more about pain and mouth sores for some people.
When I get Taxol on Thursdays, I feel like I could fight a polar bear with my bare (see what I did there?) hands and emerge as the victor. The problem is that the steroids start to wear off on Saturday and are gone on Sunday. The pain is not bad enough that I need to take anything for it, but the best way to explain it is that it is shooting nerve pain all over. I can’t take Tylenol anyway, so my options are limited. Advil is bad while on chemo, because it can cause internal bleeding and other nastiness. I also get some bone pain, but that’s likely from the injection that I have to give myself to boost my blood counts, not the Taxol.
Once I get past Sunday, it has been clear sailing. All the discomfort is over by Monday, then I have a week and a half before I get to do it all over again.
So yeah. Two more rounds to go, then I’m done with the chemo on May 13th. I assume I will get a break for a couple of weeks before going on to the 20 rounds of radiation. I’m dreading having to drive to Oshawa every weekday (or any day, for that matter), but it’s just four weeks, then it’s over.
The AC chemo was pretty much unremarkable. The symptoms I had were very mild, and nothing worse than having a mild flu for a day, usually the Sunday after treatment.
My chemo should have been tomorrow, but it got moved to today last minute because of the long weekend. I’m spending 7 hours here today, so I figure I have time to provide an update.
This time around, I am getting Herceptin (trastuzumab) along with Taxol (Paclitaxel) every other week. The major difference is that instead of 90 minutes, it takes more like 7 hours and I don’t need to take any medication beforehand.
The first medication that was administered was Herceptin, then the nurse watched me for reactions for about an hour. Then the chemo nurse administered Dexamethasone, Benadryl, and Famotidineto counteract any allergic reactions, etc. I felt very little, but I had a slight headache from the Herceptin and ended up feeling nauseous. Now, I just feel like sleeping because of the Benadryl. So yeah. Not very exciting!
Here we are on day #3 of the first chemotherapy cycle. I’m still feeling okay, which is great. I had some hard boiled eggs with paprika and keto cheddar biscuits for breakfast. Don’t be fooled. There are about 500 calories in the picture. I’m staying away from sugary and high carb foods like flour, rice, and sugar for now, but not necessarily going into ketosis. I find that this way of eating has really helped me with my body’s ability to recover from workouts when I was training for a half Ironman, so maybe it will help with chemo too.
I did notice my legs were a bit tired from taking several trips from the family room to the bedroom, which is 20 steps, 40 return trip. It’s not terrible, but it feels like I did a workout yesterday. The fact that I still feel okay after getting pumped full of chemo drugs must be the steroids working their magic. They should be wearing off anytime now too, so we’ll see what happens next. Some people say the first cycle is the easiest because your body hasn’t been beaten up by the drugs yet.
I finally got to remove the bandage from my neck today, which was nice. The bandage over my port was removed on Thursday when I got the chemotherapy. The neck bandage was extremely annoying and tight for the first few days after the port insertion. That was really the worst part, feeling like the skin on my neck was being pulled constantly. Ugh. It was great to take a shower this morning without worrying about getting any bandages wet. At this point, I should be able to return to normal activities without any restrictions, which is the upside of a port over a picc line which would hang off of my arm for a year. No thanks.
So far, so good. The only issue I had was that I woke up at 02:00 in a cold sweat Friday morning and my eyes were very dry. Because my clothes had sweat on them, I had to change and wipe my skin down so I wouldn’t have chemo drugs all over me.
Note to self: always have a change of pyjamas in the bathroom that I can easily get to. Also, get the humidifier going in the bedroom.
I did all of my meetings with no issues, but I did get a slight queasy feeling in my stomach in the afternoon. I took the nurse’s advice from a couple of weeks ago and took the anti-nausea medication immediately.
Problem solved, except for the accompanying drowsiness. Oops. I used my desk cycle to get some exercise, and that seemed to help with the effects of the medication.
In the afternoon, a nurse came by to show me how to do the Lapelga injection to boost my white blood cells. It’s pretty much the same as giving myself a B12 shot, so no big deal. The only difference is that the syringe is pre-loaded, and the needle automatically retracts when you let go of the plunger. I will be fine doing the injection on my own from here on.
This shot has the potential to cause excruciating bone pain, so the advice is to take Claritin a day before, and for three days after. Fingers crossed that the Claritin will work, because I’m allergic to Tylenol and I will only take opiates if the pain is unbearable. I will if I have to, but I really don’t want to.
In the evening, I just relaxed and watched YouTube, which is the same as many of my regular evenings.
When I got up this morning on World Cancer Awareness Day, I got some work out of the way. I was going to take a sick day for the full day, but things came up, and continued to do so during my treatment. So I guess I’ll be switching that to a half day. It never ends. ?
About an hour before the chemo, I had to take two anti-nausea medications and dexamethasone, which is a pretty powerful steroid. I had quite a large dose of it. It helps you to not feel too bad for a couple of days after the chemo, but it sucks when the steroids wear off, so I hear.
My appointment for another mammogram was moved from 12:45 to 13:00, followed by chemo at 13:20. Unfortunately, I had to wait almost half an hour to go in, so I was late to chemo by 20 minutes. No big deal though, as they knew I was already at the hospital.
I had to do another mammogram on the left (unaffected) side because the CT scan showed something. However, I was given the all clear there today. Good news. The mammogram equipment at this hospital is better than the equipment that was used back in November, so that’s reassuring.
When I got to the hospital, the nurse showed me around the chemo suite. Everyone is super friendly. The suite is quite nice with soft reclining chairs and a table to use my iPad if I want to get some work done, or watch a movie. There’s also a TV mounted above every chair, along with snacks and drinks.
Most of the people there were in their 60s and 70s, but I did see someone who looked to be in her 20s, and also someone who was around my age. It sucks for anyone, but I’m sure it especially sucks for the woman in her 20s. Also, everyone was there alone, which also sucks. The nurses are all amazing, but most of us would want someone to chat with to just pass the time. The nurses certainly do chat, but they also have other patients to see.
I had two friends do cool stuff for me. One made me a Spotify playlist to use for my chemo, and the other one got me a gorgeous plush plague nurse. He knows me too well. What he didn’t know is that I already ordered the matching plague doctor. So now I will have a pair whenever that shows up. The nurses loved it. ?
Accompanied by my plague nurse. ??⚕️ ?
The nurse explained everything as she went, which was great. She took the bandage off my port and cleaned the area, then she inserted the needle into the port on my chest. Even though it was done 8 days ago, there was zero pain. I had to look to see if she had even done it. Sure enough, there was a line coming out of the port. She covered it up with a clear bandage and got to work.
Blood was drawn from the port to make sure it works, then it was flushed with saline so that the blood wouldn’t clot in the port. From there, the nurse administered the doxorubicin (AKA red devil) with a giant syringe attached to the port line. We chatted for the 10 minutes it took for her to do that manual injection. The reason it’s done that way, is because doxorubicin can damage tissue if for some reason it doesn’t go straight into a vein. Because I have a port, the risk is almost 0, but they are still careful.
Next up, a bag of cyclophosphamide solution was connected to a pump. This was administered pretty much the same way saline is administered by IV. The whole process took 45 minutes, and I was given a beautiful knitted blanket to keep. Volunteers make these blankets, which is amazing.
At the moment, I feel totally normal. I know some people get tired later on in the evening on the first day, so we’ll see what happens. I have my pyjamas on, so I’m ready to go to bed at any time if need be.
Tomorrow, a home care nurse will come in to give me the $1600 Lapelga injection. I’m taking Claritin to hopefully stave off the bone pain. I’m allergic to Tylenol, so I don’t have many non-opioid options available. Advil and Aleve aren’t the best things to take because they can cause other issues.
So yeah. That’s about it for now. I’ll see what happens over the next 4 or 5 days. I spoke to a family member who had the same treatment, and she said that she did quite well through the treatment. Fingers crossed.
I had my pre-chemo bloodwork and oncologist appointment today. The oncologist told me that the bone scans were clean, my heart is in great shape, and the CT scan was mostly fine, except for a spot that showed up near my SI joint. I’m fairly certain that my family doctor had something to say about that when I was a child, so it’s probably nothing new.
After the appointment, I met with the pharmacist. He spent about an hour explaining all of the different medications to me, and how to minimize side effects. The medications I was given for nausea are Emend, Ondansetron, and Olanzapine. I was also given Dexamethasone, which is the same steroid Trump was apparently on when he had, or pretended to have COVID-19.
Lastly, I got a syringe with Lapelga, which would cost about $1600 without insurance. Yikes. I believe that there are options available for people who can’t afford the drug, but people have to jump through some hoops. Fortunately, it was fully covered for me because I’d prefer to keep the $6400 in my own pocket. This medication helps boost white blood cell production, to hopefully prevent a severely weakened immune system. I’m going to give myself this shot instead of going in to a clinic, because what’s the point of taking extra trips for something that is easy to do?
My chemo schedule with a minor adjustment. Cycles 5-8 are one week, not two.
After all that, the pharmacist went through the chemo regimen I will be on, and I was surprised to learn that I will be having a dose dense regimen. That means instead of getting chemo every three weeks, it will be every two weeks for the first four cycles (AC), then weekly for the last four (PACL+TRAS). That’s going to make a mess of a few items in my calendar, so that should be “fun”. The upside is that I will likely be finished with the chemo portion of the treatment a lot faster than I originally thought. If all goes well without delays due to low white blood cell counts, I will be doing my last chemo treatment on April 22nd.
Once I’m done, I get another bone scan done on May 3rd, followed by a month of radiation not too long after that. Just looking at all of this treatment ahead of me, I am already seriously looking forward to the summer to get a break!
Weird. I expected to turn when the sun went down last night, but it didn’t happen. I’m still not a vampire. Maybe it will happen at sunset tonight. In any case …
There’s very little in terms of pain today, and I was able to work normally. I can swallow food and drink no problem. I am being careful not to use my right arm much, but that’s just because I want to give the areas a chance to heal as opposed to any actual pain. The only time I feel pain is when I sit up after lying down, cough, sneeze, or laugh too hard. All I have been taking is Advil every 6 hours, and CBD.
It’s a little bit creepy, but I can feel the tubing under my skin going up to my jugular vein. It doesn’t hurt, but it’s weird. I’m sure the port will also feel really strange once the bandages are off and the swelling comes down. I was told by a friend yesterday who has dealt with cancer and having a port to make sure that I always bring a scarf or something to pad a seatbelt if I have to be the passenger in a car. I hinted at that in yesterday’s blog post, but I didn’t quite explain where that came from.
If you want to learn more about how ports are used, here is a decent YouTube video.
I thought all I was going in for today was my port. However, I ended up with this instead. I know I dozed off once or twice during the procedure due to the drugs they gave me, but I’m pretty sure this is an actual vampire bite. There should only be one neck incision for a port insertion. ?
This procedure was somewhat painful at the start. The doctor had to stick freezing needles into my neck (ow!) and chest (meh) which wasn’t what I would call pleasant. I could also feel something being fished through my neck. The nurse injected fentanyl into my IV probably about 5 times during the procedure, which really helped block the pain. They also gave me a sedative so I would be in a state of ‘conscious sedation’. During the whole procedure, I was able to do things like take a deep breath and respond to questions no problem.
Everything that would affect my cognitive abilities wore off very quickly after the procedure, so that’s great. Of course, I was nervous about having fentanyl for a procedure because we all hear about fentanyl overdoses in drug addicts, but it’s measured and completely safe in a hospital setting.
Now that this is done, my chemo can be administered via the port just under the skin on my chest instead of through the veins on my hand, which aren’t big enough. Depending on the chemo I’m getting, trained staff might be able to use the port to do bloodwork too. They can even do enhanced CT scans using the port because it can handle 300 psi for the imaging dye. Fancy.
My port is the smallest one shown at the top of the image.
In terms of pain, it hurts a bit when I laugh, cough, or swallow. I’m sure it will be like that for a couple of days. After that, I shouldn’t feel a thing, except if I am in the passenger seat of a car and I forget to pad the seatbelt!
I also did my COVID-19 test today, which should really just be a formality. Next up, I visit with the Oncologist on Tuesday and do (more) bloodwork before my first chemo on Thursday. Shit’s gettin’ real, as the kids say.
It’s only Wednesday, and I have been at the hospital three out of the last four days. I’m glad I have a break until Tuesday.
I had to get up at 05:45 today to make it to the hospital by 06:45. Yuck. I have a bone scan, ECG, and bloodwork to do.
When I went into the nuclear medicine area to get even more radioactive substances injected into my body, I heard one of the staff grumbling about Mondays. I laughed to myself because obviously today is Tuesday! Right? It dawned on me that I just feel that way because I was here yesterday. Oops.
I’m supposed to drink a lot of water to flush the radioactive tracer out of my kidneys, so I went to Tim Hortons to get some tea. Their coffee is too disgusting to smell, let alone drink. The folks in Nuclear Imaging let me hide out in an area alone so I could drink my tea.
When I got to the Cardio-Pulmonary Department, the receptionist was venting about her husband’s ex, and how the ex never picks the kid up on Sundays because she drinks too much. The other receptionist said she shouldn’t be dragging the kid into it, which was fun to hear them debate. ?
The ECG was interesting to watch. There was a student doing the procedure on me, so I asked her a few questions to make sure she actually knew what she was doing. (hah)
Other than that, the bone scan was pretty boring. I had to get strapped into place on a bed so I wouldn’t move my hands or feet, then the scanner moved me through over a 17-minute period. After that, the scanner went around my torso, which took probably 25 minutes or so. I fell asleep a few times since I had to get up so early, so yeah. This procedure is not scary or painful at all.
After that, I had to get bloodwork done at the cancer centre by swiping my patient card at the kiosk for the first time. I guess it’s official now. Everything in the bloodwork looks great, and my hemoglobin is almost at the maximum of the range. That’s crazy, since it was less than half of what the minimum should be 10 years ago.
Once my bloodwork was done, I heard someone saying an anglicized version of my middle name. Since the name is very uncommon around these parts, I asked the phlebotomist if maybe someone mixed something up and is calling me. Sure enough, a woman walked in and said that it was her name, and because they don’t use accents, nobody ever knows how to say it. I laughed and told her that’s my middle name, complete with the accents. I also thought to myself, that I am really glad my parents didn’t reverse my middle and first names. People screw my name up enough as is.
