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!
