I haven't really been actively updating this blog lately, and I'm going to be completely honest with the reason why. This fourth cycle just sucked. I spent the whole last post comparing this fourth cycle to my first cycle. After this last week of treatment I now realize that this was the hardest cycle for me.
I had a surprise on Monday morning. White count was low, but high enough to receive treatment. It was at 2.3, and at 1 they won't give chemo. I haven't had any problems with my blood counts until this week. Luckily it didn't drop any lower this week. It actually rose to 2.7 by Friday. I'll have to be careful for now. I don't want to get sick.
By Wednesday I felt like I couldn't take anymore. I first thing I thought when I woke up...."It's only Wednesday! I'm not even halfway done with the week yet." I got 13 hours of sleep, and I felt like I needed 13 more. 13 hours does sound like a lot of sleep, but I guess it's not going to do you much good when their divided into 13 one hour naps with a bathroom break in between each. Last night I slept for only 8 hours, but only had 2 trips to the bathroom, and I must say that it was better than the 13 hours of sleep I usually get on a treatment day.
I hoped Thursday would be a better day, but didn't expect it to. It wasn't. Thursday is always my worst day in the B cycle. I thought Wednesday morning was bad, on Thursday I felt 10 times worse. I was so much more tired, and like usual the diarrhea is pretty bad. This makes the trip down to Philly not much fun.
Friday was substantially better than Thursday. I felt much more motivated to get ready in the morning. And that's how it always is on my last day.
One plus about this week was that I didn't throw up even once. Had a ton of close calls, but I kept my composure, and never actually threw up. It gets more difficult as the week goes on, but I got through it. The combination of the nausea, and the Mesna destroys my appetite in the treatment as the week progresses. On Monday I ate probably the most that I ever ate in the center, but by Friday I wouldn't even put food in my mouth other than the Atomic Fireballs that I only consume to mask the chemical taste.
My appointment with my oncologist on Friday went well. He explained to me that the fourth cycle is usually very difficult for Ewing's patients. After having that nice break it's tough returning to feeling like garbage again. He's really surprised with how my blood counts have been so resilient. These last three cycles can be troublesome with the blood counts, but I got through this fourth cycle pretty well. Hopefully I can get through these last two cycles without a transfusion. He said the platelets can really delay treatment if they go low, and I haven't had any problems there. I was actually above average in my bloodwork when it was measured on Thursday. We asked him about what's the plan after I finish treatment. If my scans are clear after finishing treatment I will get the port removed! I thought it was going to stay in for a while after treatment, like one year after, but he doesn't do that. Some oncologists do keep them in for a while, but it's more of a hassle to maintain it, and it's really not that much of a procedure to install one so you might as well lose it. He did say that there is a small chance that the cancer could come back, and that will be my next challenge. I can't worry about that yet. I'll be so happy to get this port out. It doesn't really bother me that much now, but when I'm done with treatment I want it out. I don't think I would feel like my treatment is over until I get the port out. Plus, it can get annoying when exercising.
Today I'm feeling a little better than yesterday. I think most of the chemo is out of my body now. I drank a lot these last two day trying to flush it out. I did a little more today than yesterday. I mainly rested on the couch yesterday and watched TV. I did some rehab for my arm today which I haven't done in over a week with everything going on. My arm didn't really get that stiff over the week surprisingly. It felt really good to do the exercises today. My tricep tightened up over the week, and the exercises really get the blood flowing in there well. I have my follow up appointment with my surgeon on Thursday so I want my arm to be feeling really well by then.
And one last thing. This week I knew that I would start losing my hair again. I just didn't know which day would be the day where I really notice it. It was Thursday. As I have already mentioned before I don't really care about that, I just don't want to lose the eyebrows. So every morning I would lightly pull at my eyebrows just to see if they were falling out, and well.....one morning I did that and I got quite a few. So I think that I'm going to be eyebrowless(yes that's a word, not really though) very soon. I'm just going to try to avoid touching them, and hopefully I can just let them stay there even though the hair is likely all dead now. All of my facial hair fell out this week along with any new hair that grew in over my break with the exception of the hair on my head. I shaved that today though.
edit: just realized that I unpublished this post. It's back on now.
Physically, the side effects did come as a shocker after having a long recovery with surgery. I just got blasted with everything at once. But what made this past week the worst was the mental aspect of it. Nothing is more demoralizing than a week of chemo. I look back on this past week, and I don't know how I got through it. Sitting in a treatment center for hours on end with nothing to do but watch TV, and have countless trips to the bathroom. If you were wondering how many times I actually have to go to the bathroom in a 4 hour chemo session I actually counted one day. 18! And that day I felt like I wasn't making that many trips. At least I have really good kidneys. Not being able to take a good shower all week is another thing that I don't like about the week chemo. This is because my port is accessed, and I can't get it wet. So I get wrapped up, and still have to be pretty careful. There aren't many TV channels, but my mom and I have our routine of shows that we watch everyday. The shows we watch are, "Let's make a Deal(Never heard of the show until chemo, but apparently it's been around for a while)", "The Price is Right", "Who wants to be a Millionaire", and "The Chew". With the news in between.
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| I keep that in my chest all week |
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| Looks a little ridiculous, but it works |
I had a surprise on Monday morning. White count was low, but high enough to receive treatment. It was at 2.3, and at 1 they won't give chemo. I haven't had any problems with my blood counts until this week. Luckily it didn't drop any lower this week. It actually rose to 2.7 by Friday. I'll have to be careful for now. I don't want to get sick.
By Wednesday I felt like I couldn't take anymore. I first thing I thought when I woke up...."It's only Wednesday! I'm not even halfway done with the week yet." I got 13 hours of sleep, and I felt like I needed 13 more. 13 hours does sound like a lot of sleep, but I guess it's not going to do you much good when their divided into 13 one hour naps with a bathroom break in between each. Last night I slept for only 8 hours, but only had 2 trips to the bathroom, and I must say that it was better than the 13 hours of sleep I usually get on a treatment day.
I hoped Thursday would be a better day, but didn't expect it to. It wasn't. Thursday is always my worst day in the B cycle. I thought Wednesday morning was bad, on Thursday I felt 10 times worse. I was so much more tired, and like usual the diarrhea is pretty bad. This makes the trip down to Philly not much fun.
Friday was substantially better than Thursday. I felt much more motivated to get ready in the morning. And that's how it always is on my last day.
One plus about this week was that I didn't throw up even once. Had a ton of close calls, but I kept my composure, and never actually threw up. It gets more difficult as the week goes on, but I got through it. The combination of the nausea, and the Mesna destroys my appetite in the treatment as the week progresses. On Monday I ate probably the most that I ever ate in the center, but by Friday I wouldn't even put food in my mouth other than the Atomic Fireballs that I only consume to mask the chemical taste.
My appointment with my oncologist on Friday went well. He explained to me that the fourth cycle is usually very difficult for Ewing's patients. After having that nice break it's tough returning to feeling like garbage again. He's really surprised with how my blood counts have been so resilient. These last three cycles can be troublesome with the blood counts, but I got through this fourth cycle pretty well. Hopefully I can get through these last two cycles without a transfusion. He said the platelets can really delay treatment if they go low, and I haven't had any problems there. I was actually above average in my bloodwork when it was measured on Thursday. We asked him about what's the plan after I finish treatment. If my scans are clear after finishing treatment I will get the port removed! I thought it was going to stay in for a while after treatment, like one year after, but he doesn't do that. Some oncologists do keep them in for a while, but it's more of a hassle to maintain it, and it's really not that much of a procedure to install one so you might as well lose it. He did say that there is a small chance that the cancer could come back, and that will be my next challenge. I can't worry about that yet. I'll be so happy to get this port out. It doesn't really bother me that much now, but when I'm done with treatment I want it out. I don't think I would feel like my treatment is over until I get the port out. Plus, it can get annoying when exercising.
Today I'm feeling a little better than yesterday. I think most of the chemo is out of my body now. I drank a lot these last two day trying to flush it out. I did a little more today than yesterday. I mainly rested on the couch yesterday and watched TV. I did some rehab for my arm today which I haven't done in over a week with everything going on. My arm didn't really get that stiff over the week surprisingly. It felt really good to do the exercises today. My tricep tightened up over the week, and the exercises really get the blood flowing in there well. I have my follow up appointment with my surgeon on Thursday so I want my arm to be feeling really well by then.
And one last thing. This week I knew that I would start losing my hair again. I just didn't know which day would be the day where I really notice it. It was Thursday. As I have already mentioned before I don't really care about that, I just don't want to lose the eyebrows. So every morning I would lightly pull at my eyebrows just to see if they were falling out, and well.....one morning I did that and I got quite a few. So I think that I'm going to be eyebrowless(yes that's a word, not really though) very soon. I'm just going to try to avoid touching them, and hopefully I can just let them stay there even though the hair is likely all dead now. All of my facial hair fell out this week along with any new hair that grew in over my break with the exception of the hair on my head. I shaved that today though.
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| 4 Down, 2 to go |
edit: just realized that I unpublished this post. It's back on now.
Hi Mike, it looks like you have the double port? Does that mean you receive your iv fluids at the same time as the chemo? Mathew only has one port access. Why do you have such a large bandage over the ports? I ask because Mathew has a small bandage on his. Mathew has lost all of the hair on his head, his body plus his eyebrows and eyelashes. Oh and his nose hair too, so there is a constant drip for him, poor guy! Wishing you better luck at keeping yours. How come you don't stay in the hospital for the week's chemo? Is that your choice or just how the hospital does it? It wasn't an option here, the week-long treatment is done as an in-patient.
ReplyDeleteWell I only use the double port on the week chemo(my B cycle). They utilize both ports when I receive my sodium bicarb and ifosfamide at the same time. As for the bandage, it's really not that large maybe it's the angle of the pic? The pic on the right is just for showers. It's my choice. But most people do what I do and travel back and forth each day. It does get difficult sometimes considering its a 2 hour drive.
DeleteI had Ewings when I was 13 I'm 40 now, I had 10 out- patient treatments, fore 3 day treatments, bone marrow transplant and 30 day of radiation on my leg.(at Shands hospital gainesville fl.)....... So hang in there, by the way my Doctor was Dr. john graham pole.......
ReplyDeleteThat's awesome!
Delete