I thought I would give you a run-down of the typical two-week routine (not including kids' stuff . . .) Sorry it's sort of a repeat of the last post, but more complete:
Thursday (Oct 30 was the start of this two week period): Chemo. This takes most of the day. I go in at 9 a.m., get my blood checked, see the doctor and then get my drugs. Usually, I am finished by 3 p.m. They hook me up to a portable pump that comes home with me to give me my last chemo drug overnight (the skin eating one :) ) After chemo, I am usually wiped out, because they give me Benadryl IV to prevent an allergic reaction to one of my drugs (Rituxin). I can never "sleep it off" at chemo, so I do that once I get home for about an hour and a half. Usually the evening I am fine, but go to bed early to the sound of my little pump doing its job by my head.
Friday: In the morning, I go back to the doctor to have my pump discontinued and I get a shot of Neulasta (for boosting my white blood cell count). This drug has worked so well, my levels have never dropped. So I don't go to the doctor for anything else between now and my next chemo (typically).
Saturday & Sunday: I usually have a little bone pain from the Neulasta doing its job. When we are busy on the weekend, I can tend to get a little tired. It seems the nausea from the chemo is getting a little worse each time around, but not too bad. (That's where we are today)
Monday: By now, I am usually doing well. Taking my steroids gives me an energy boost today and I try to be "superproductive" in anticipation of the down days that are coming.
Tuesday: My last day of steroids. Try to make it another productive day. Maids come.
Wednesday: Coming off the steroids, but usually not too tired. By late afternoon or early evening, the muscles in my shoulders start to ache. The toxins are building up in there on their way out of my body. Because it signifies tumor death, it is an extremely positive thing, but it is uncomfortable. We are learning to rub, rub, rub. That seems to make a big difference in getting them (the toxins) out of my system.
Thursday: Boy am I tired by now. The toxins are worse. It is a vicious cycle. My muscles ache, so I get tense. My tension makes my muscles ache worse. I get more tense. Etc, etc. Getting a real, professional massage at this point has helped tremendously. And it is not for pampering. It is, to me, a medical necessity. I do a lot of sitting, laying down, resting and sleeping. And someone else (an angel in disguise) comes and does anything I should be doing. My family greatly appreciates this, too.
Friday: I usually wake up with the tail end of the achyness. My kidneys hurt last, so that is usually an indicator we are near the end. The toxins are leaving the body. After lunchtime, I am usually up for an errand (if someone else drives). But we usually keep the day pretty low key.
Saturday & Sunday: Same as before, I usually have more energy, but get tired fast if we are busy. It doesn't hurt to have a back-up driver with me just in case.
Monday: My energy starts to return and I feel decent (if I haven't overdone it over the weekend). I do think that gradually I am losing overall energy each round. So I am probably at 75% now when "full" energy returns.
Tuesday: I keep trying to do as much as I can to feel "normal". Drive carpool. Go to practices and games. Get homework done. Go outside.
Wednesday: Time to gear up for another round to begin. Boy they are going by fast!
Germany ... and a road trip to Norway
2 weeks ago