Mets Day 797 - Off to Alaska, etc.

This evening Jennifer and I fly to Seattle, where we will spend a few days with two other couples.  On Saturday, the six of us will board the NCL Jewel for a 7 day cruise up the inside passage to various places along Alaska's lower panhandle. We'll return to Seattle on June 28, spend a couple of more days there, then fly to Utah on June 30, where we'll visit family (including baby Rose!) and friends. We'll return to DC on July 9. It's a bit less strenuous than last summer's European tour, and we're looking forward to it. I'll probably post a couple of times while we're on the road.

I find that my ability to meaningfully plan ahead is limited to rolling three-month windows. I am mindful that the next scan could show that my cancer is spreading, and that I'll need to plunge into another round of chemotherapy or other form of treatment. I've also discovered that many travel insurance policies specifically exclude complications from preexisting cancer. So we fly Southwest, which has no change fees, and allows credit to be transferred to anyone else, and time our other bookings until after my most recent scan. My next scan is July 15, which means that we have not planned any more trips beyond that.

Each Monday I receive an emails from BCAN listing all of the prior week's questions and journal entries from others dealing with bladder cancer. I typically post about a half-dozen or so responses, and frequently enter into a dialog with fellow patients or their caregivers. This past week, for example, I traded notes with a bladder cancer survivor in his mid-50's who lives only about 20 miles away from me. He's also dealing with a leaky neobladder, and asked:

I saw your post about an incontinence drug, and have questions. Namely, if it helps you at night, does it inhibit voiding during the day? 

I responded:

Talk to your urologist about trying either imipramine or Cymbalta for nighttime incontinence. Take it at bedtime. Start with about 25 mg, then try upping it to 50 mg. (A therapeutic dose for the labeled purpose is over 100 mg, so you should not experience any mood alteration at those low doses.) Cymbalta didn't work for me, but I found that 50 mg of imipramine was effective at keeping my neobladder from contracting by itself for 8-10 hours. I started at 25 mg, detected some improvement, and followed my urologist's advice to up it to 50 mg to see if that was better. If I try to void within 8-10 hours of taking the imipramine, I find that it's harder to squeeze the neobladder, although it's still possible. It just is a series of short squirts instead of a longer flow. The effect of the drug wears off after 8-10 hours, so there is no difference during the day. The urologist who suggested this said that he'd found about 30% of his patients who had their prostates removed found some improvement using these low doses of one of these two drugs. If you don't see any improvement after 2 weeks, then you're in the 70%. It's worth a shot. There's little downside to trying such low doses, and it helped me a lot. 

I also recently traded notes with a woman in New Zealand whose husband was recently diagnosed, and was trying to come to grips with all of the treatment options and information overload. I've been trying to support her by sharing some of my experiences. A cancer diagnosis certainly teaches a new vocabulary, drinking from a firehose can be exhausting.  Together, we're better.