Well, it certainly has been an interesting Chemo Cycle #1... not one that I wish to repeat again. At least, not one I wish to repeat with the same intense pain in my heels that I experienced this go round. I'm still amazed that the side affect was that it attacked my heels I (not a known side affect) and that it happened so quickly. I had taken the first pills on the Wednesday night and by the Friday, I was feeling the pain to the point that it was uncomfortable and I knew something was up. My oncologist wasn't sure that what I was experiencing was actually related to the chemo because she figured if I was going to have any side affects, they probably wouldn't show themselves until the third or fourth cycle... not less than two days later. But, sure enough, it was the chemo because the longer I was on it, the more intense the pain became (by about Day 8 I didn't think it could get any more intense, but I was wrong). I did make it thru until Day 14, but on the 14th day, I couldn't even walk around my carpeted apartment without being in tears.
Anywho... as soon as I stopped the chemo, within 24-30 hours, the pain had totally disappeared. That spoke volumes to Sharlene (oncologist). It proved that the pain was definitely caused by the chemo and was probably related to either the dosage or the length of continual time I was on it. If you all remember (if I remembered to log it in the last blog entry) we lowered the dosage from 1650mg twice/day to 1500mg twice/day. Well, we don't want to lower the dosage anymore to the point where it becomes ineffective. That wouldn't make any sense. And my other option at this point, if we decide to stop the oral chemo is to go back on the infusion, which would mean the surgical procedure to install another port in my chest, just below the collarbone. I would then have to go to the Cancer Agency every two weeks and sit in the chemo chair for 4-5 hours while they infuse me with a big old dose of liquid chemo directly into my blood system. I would them be switched over to the portable chemo pump which would be attached by IV to the port and I'd have to wear the chemo pump for 3 days. I am trying to avoid that at all costs. In the summer, it is so inconvenient to wear this pump, which you can't get wet, making showers a real challenge. Even getting dressed is a real challenge because of the IV and pump.
So, we are going to give the oral chemo another try. Only this time we are going to change the scheduling of it. I will be taking my 1500mg twice/day, Monday - Friday this week. Then I'll have the two days on the weekend off for a break. I will then go back on it for Mon - Fri, then be off for a week for recovery. Although that week will actually end up being 9 days because the last pills will be Friday night, then I get Sat/Sun, Mon-Fri, then Sat/Sun off before starting up again on the following Mon. We are hoping that with having the weekends as a break, the pain won't be quite as intense. There's no doubt that there will be pain but with having the 2-day break, it may go away over the weekend, then will hit sometime again when I'm back on the chemo, only to go away for the weekend and the 9 days off will let me have time to regenerate my red/white cells and NOT be in pain :)
What's a girl to do? I obviously have to give it a try and if it's doable, then this is a good thing because it will keep me off the IV version :)
Meanwhile, TUTS opens this week! Oy vey! Both shows are going to be very good but as is always the case the week or so before the shows open, you can cut the tension in the air in the office. People are running around checking and double checking that everything is in place. There is sooooo much to do just before the shows open that we don't have to do once they are up and running. There are glitches to be ironed out, there are invitees for opening night and did we catch those that need to be invited vs those that should never have been on the Opening Night guest list but have been for some years. Tempers are short and I won't even get into the micro-managing that goes on, which I absolutely hate! But opening night(s) happen on Tuesday and Wednesday and once both shows are up and running and once we can hope to have a long run of good weather, everything should calm down and we can just enjoy the summertime experience.
I, of course, will have to play everything by ear on a day to day basis. Like I say, if I can walk with minimal pain, then I will be spending my summer down at TUTS. If there are days where the pain makes it too difficult to walk, then I'll have to stay at home. I'm not sure how many cycles I will end up having to do. We won't be getting a CT scan until probably sometime in Sept/Oct and that CT scan will show us whether or not the chemo is having any effect. If it is, then great we will probably finish the standard 6 cycles. If it isn't, then we will probably have to go on the infusion chemo.
Meanwhile... everyone think wonderful thoughts that the pill form will work... and the sun will be out until August 21st