I had my first unescorted outing yesterday. Granted, it was to a hospital which is pretty safe! It was lovely to see my old co-workers and go on a coffee date. Yay!!
Today was uneventful but I finally have the energy to do a little baking. I am currently waiting for the banana bread to come out of the oven. Yum.
So, one of the reasons I started this blog, aside from the reason that it was an easy way to keep people up to date on my progress was for future cancer patients to read a little bit about my experience as they get ready for their own experience. I found that as I was preparing for my first chemo date reading about other people’s experiences was very helpful and there were lots of little tips and suggestions. Just a warning, the rest of this post is going to be lots of detail about my meds and the gory in depth details of my side effects so far so if you stop here I totally understand.
- Emend (generic:Aprepitant) – super duper anti nauseant, taken pre chemo then for 2 days post
- Dexamethasone – a steroid that works in combination with Emend, supposed to give me energy and make me feel twitchy (not so much) – pre chemo then twice a day for 6 doses
- Ondansetron – anti nauseant, 1 dose pre chemo
- Prochlorperazine – anti nauseant, as needed if the others don’t do a good enough job – knock on wood I have not needed these yet
- Ranitidine (Zantac) – for heartburn, works really well on chicken heartburn:)
So far the major side effect (aside from the taste bud thing, but I have gone into some detail about that already!) I have had to cope with is total exhaustion otherwise known as fatigue in medical terms. Whatever you call it I was REALLY tired. It fully set it on the second day after chemo and got progressively worse through the 4th day. One of the side effects for Emend is it may cause dizziness so I think the tired was partly due to this drug causing low blood pressure.
And the tired is strange. I kept thinking that if I ate more the tired would get better but it never did. I was eating every couple of hours and really trying to make sure I got protein but it only got worse.
On Friday evening it was so bad that I actually started stressing out about having to go to the cancer agency for bloodwork in 2 weeks. I was so utterly exhausted that I couldn’t see how 2 weeks from that point I could possibly make it to the clinic. Just the thought of having to walk the fifteen feet from the front entrance to the elevator seemed like a completely impossible task. Eventually my poor tired brain was able to figure that they probably had those handy wheelchairs thingys at the cancer clinic and Ian could just push me but for about 5 minutes there I think I was on the verge of total freak out……except for the lack of energy.
Then on Saturday morning the extreme exhaustion was just gone. I was still tired but nothing like those 3 days.
A funny side effect for Emend is it causes hiccups. Nothing serious, just every few hours I would hiccup a couple times. it was sort of funny. It happened for a couple days and I was wondering about it as I had experienced that before and sure enough, it’s a side effect.
I have been fortunate so far that I have not had to deal with any real nausea. In the mornings I always felt off but never really sick. I found staying in bed and eating half a bag of saltines usually did the trick then I could get adventurous and move to the couch. I was happy when that stage ended so I didn’t keep having crumbs in the bed! I am only drinking bottled water right now as I have heard that tap water can upset a sensitive stomach and I will keep that up till chemo is done.
Another common side effects is mouth sores. I have not really had to deal with this but on the second day after chemo I did notice that my mouth and gums did start to feel more sensitive. I did start to get a couple bumps that I suspect could have turned into sores but I drank soda water after dinner to thoroughly rinse out my mouth and the bumps went away.
Next was this funny bone pain also around day 2 after chemo. It started in my head, mostly my jaw and my jaw just felt sort of funny. If I pressed on my jaw it sort of hurt. Yes, I stopped pressing my jaw:) The next day the pain was gone in my jaw but my collarbone, shoulders, and sternum had the same pain, the day after it was more my ribs and then finally the last day my left elbow. Then it just went away. Weird. It was never really uncomfortable, just weird.
Next up is my poor skin. It started on Monday, so one week after chemo. I started getting spots. I think it is basically acne. My white cell count should have started dropping by Monday so it is probably just a sign of my lowered immune system. We just switched to a sensitive skin laundry detergent so that might help, if necessary I will get something super gentle. The spots already seem to be resolving themselves but I will continue to monitor them. The last thing I need is a skin infection with a lowered immune system.
I am now 2 weeks post chemo and I still have my hair. My scalp is still a little tingly but not as bad as it has been. But I noticed I was shedding more today. I think this really may be the beginning of the end.
On the whole scale my side effects (thanks to all the pills I am sure) have been very manageable. I certainly think that I am lucky to be going into this whole experience being extremely healthy aside from the whole cancer thing. I have always eaten well and got lots of exercise so I am starting off with a decent amount of muscle mass and really I don’t have to change my eating habits (except for maybe adding in the occasional McDonald’s hamburger). I have also been drinking lots of fluids. I had heard recommendations of 1.5 – 2 liters a day and I am really trying to do that. I am also limiting my caffeine and so far almost no alcohol.
And during the first week while I tried to eat in a well balanced manner I also listened to my body, if I craved something I just ate it, in particular simple carbs (the saltines and Arrowroots). I was a little concerned the first time I put on some tighter pants that they wouldn’t fit but it wasn’t a problem. I think during those first 5 days after chemo my metabolism was cranked into overdrive so all the excess carbs weren’t a problem.
Now I am just waiting for my next round of chemo in a week and slowly regaining my energy. And I feel so much more prepared for what the next round will be like.