Taxol

Today I had my first taxol treatment and it was fine. The benadryl bothered me, though, so I took a lorazapam, which made me sleepy. (Next time I will plan to skip that part, because that was the feeling that lingered.) I might have some pain from the taxol for 24-48 hrs starting anytime in the next 5 days. I didn't love the feeling I got from the decadron either -- but I will get a half dose next time; that was the deal, for my eyes. (They will watch me to make sure I'm good with the taxol.) Frankly I was astonished that after the decadron (which felt iffy) and the benadryl (which felt bad) the taxol was fine.

Meanwhile I have been riding. I biked 70 miles between tuesday and Wed, but most of the tuesday ride was with a slower bunch of people so it wasn't as good, workout-wise....... so when I took Mom to the adult swim hour at the pool that evening I swam a mile, too. I had thought I would not be able to ride tomorrow, but I feel alright -- just sleepy. It's an early ride, so maybe if I get to bed soon....... Early rides are hard on the sleep, and it feels too bad to miss out on sleeping in on a summer day when no one has to be at camp -- but it's also the best time to ride because it's cooler.

I have completely given up wearing a scarf under my helmet. It's just too hot -- and the sweat cools me INSTANTLY with no hair in the way!

I think Mom is starting to feel like she's getting ready to be home again..... which is too bad because I have really been enjoying being able to go on bikerides as much in the summer as in the non summer, this year since she's her paying attention to the kids. They don't need me to be home in order to be safe at their age (especially not with Pinky here -- Pinky even goes and barks at them if they have a fight!) However, they feel blown off if I'm off having a great time and they are stuck here doing.... what? And I can understand that. However, they don't want to go out and do something together either.....

I think Mom is tired of hanging out with Em while I go on a bikeride every morning, though. (Matthew's here too but he sleeps in, having stayed up all night.) This morning I actually tucked him in after I got up. I was up at 7 because I had to be at Georgetown for an appt. at 9. Usually I sleep in like Matthew -- just not that late. I'll sleep til 10-11, and he'll sleep til, gawd, 2-3!

I know, I'm a sucky parent with completely different standards for my two kids. Heard it! Never mind that they are very different kids......I'm still messing up their upbringing, somehow. Many hows. They know I love them, though, even if most of the dinners I make are only slight variations on the same theme. They can ask sexual questions freely, and do -- though Matthew's clammed up lately, as they do with the opposite gender parent when they hit puberty. (I hope he managed to get all the important questions in first!) These days they are asking questions about cancer, too, but not so many. I talked with them about it openly at first -- and now occasionally I do after an appt. But I get the feeling that they don't want to hear about it so much -- that they would rather pay attention to the fact that I seem pretty much like my usual self, and try (as usual) to get my attention for their needs. Which isn't quite what I had in mind for the summer, though it's reasonable, I suppose.

I have an eyebrow pencil now -- because my eyebrows are thinning. I am expecting to lose them completely, as well as the lashes, and the pubic hair. All that has thinned. Leg hair is thinner too -- it OUGHT to go with the taxol! If it doesn't I'm leaving it on.... I just can't see shaving my leg hair off when all the rest of my hair is falling out.

Meanwhile on the eye front -- I have an eye appt a week from Tuesday, and a plan about which med I am going to start if my pressures seem to be going up. (Or maybe I could start it anyway........ not sure if that would be protective or not.) At any rate I am happy to have a plan, and happy to be moving forward -- perhaps with no major impediment! Though there is still that pain that might hit. There will probably be a cumulative effect, too.......

As long as the tumor shrinks. Not sure how long I have to wait to see if that's happening..... I'm sure tonight is too soon, but after 2 weeks? Three? ????

Eye Plan!

Well it turns out that the World's Best Eye Doctor is still in my corner, even though I moved away and haven't been to her office in something like 2 years. She thinks I would do well with Xalatan, Travlatan, or Lumigan, in case I have a spike from the decadron. I will have some eye redness, and I might get headaches, but they should work -- and I should be able to stop using the drops after I'm done with the decadron (early October) or soon after.

I have put Alan on the job of researching these meds -- but basically I trust this doctor. Besides, I remember talking about Xalatan with her years ago, and it sounded fine except for the possibility that it might darken my eye color over time. I have to confess that I am still vain enough that I would prefer to keep my eye color..... though the possibility of losing it kinda pales in comparison with the possibility of losing more eyesight, or how about my life...... However, Dr M says that the darkening happens over a period of 6-18 mponths, if it happens, and I would probably need to be on the drops for 3 months maximum, so I'd likely avoid that.

If you live in the Boston area and need a fabulous eye doctor, ask me and I will point you in the right direction. She might be a glaucoma specialist -- but I think basically she's who you want to go to if you have enough going on with your eyes that you need someone fabulous.

My oncologist has been really helpful about this too. Last Thursday, when I was still trying to make a backup eye plan, she said that if I needed to go to Boston for surgery in my left eye I could take a week off before starting taxol to do it. Turns out it's not necessary, but I really appreciated her offering the suggestion -- and the fact that she understands that I am probably capable of creating an eye pressure spike just by worrying about not having a good plan.... not to mention her observation that now is a fine time for surgery since my white blood count is through the roof at the moment. (I had a shot of neulasta 2.5 weeks ago to boost it. It kind of overcompensates.) She also said she is planning to try giving me half the amount of decadron that she usually gives people before taxol. I hope it works!