Nuclear Disarmament

JoJo met with the Infectious Disease doctor today and she has made good progress in the treatment of her lung maladies. Dr. Young pulled up her recent CT scan and did a side by side with one taken during the height of her battle 6 weeks ago. Electronic medical records are so cool! The comparison showed that the enlarged nodules have completely or nearly disappeared. That is good. Also, the GBT on her lung that was the size of a golf ball and the driving force behind biopsies and all form of concern several weeks ago, has very nearly disappeared. GBT? That would be "Great Big Thing". A very scientific explanation don't you think? Reading scans gets a little challenging at times because the doctor can see so much detail. It can be tough to tell what is important and what isn't. I have heard them frequently use the term UBO (unidentified bright object) or USO (unidentified shiny object) to refer to distinct white spots. All that technology and we still get "Uh! I don't know what that is, but it's probably not important."

The upshot is that JoJo gets to discontinue some nuclear antibiotics. No more twice daily amikacin treatments that were inhaled using a nebulizer. Lousy aftertaste. All done. No more meropenem that was done twice a day through home infusion. For the first time since May, JoJo has no lines hanging out of her chest. THAT is a BD (big deal)! She still has a port, but it is under the skin and will continue to be used frequently. Going forward, it will be accessed only when needed at the clinic......assuming all goes well........and it will. The yucky tasting, $56/spoonful antibiotic also can be stopped! And there is one capsule added that will probably continue for a year. Still a fair trade. All in all, my caregiving duties have become more streamlined and JoJo's quality of life jumps considerably. The last 6 weeks of antibiotic therapy have been unappetizing and our girl deserves great credit for sticking with it.

You know what is fun? Going to a doctor's appointment, and the nurses have to ask you how to pronounce the names of all the drugs JoAnne is taking. It makes me feel valuable :-)

JoJo bumped into a fellow at the clinic who is 30 months out on his transplant. He still gets fatigued and has to take a daily nap. No sweat. We could live with that. I have been taking naps that were becoming inordinately long. I stopped by the sleep clinic to talk with a nurse practitioner. She asked me to say Ahhhhh and looked down my throat for about a second. "Have you ever thought about doing a sleep study? You have Class 4 (out of 4) obstruction and should be evaluated for sleep apnea." Loosely translated, "You are getting old, soft and chunky, and it's affecting your ability to breathe properly while sleeping."

Now, I have been a good soldier through this whole endeavor. JoJo has had a lot of respiratory issues that have led to sleep sounds of varying tone and amplitude if you catch my drift. Never once have I complained. In fact, I find them kind of soothing and I can always find her in the dark. Recently, she has become a very quiet sleeper. I noted the improvement and complimented her. "Thank You" was her response. "And by the way," she continued, "You have begun to sound like your muffler has fallen off. Plus, you stop breathing for extended periods of time." I go in Sunday night for a sleep study. It should be interesting. I will bring my pillow and my blankie and have to rustle up some acceptable PJ's so as not to embarrass myself or more importantly my spouse. I will let you know how it turns out.

For now, we just tread water while waiting on a bone marrow biopsy in a couple of weeks. JoJo's very greyish hair is coming in slowly and I am sensing a visit to the stylist before too long. 

Today's developments are all good and we pray for JoJo's continued progress. Throughout this transplant, I have often recalled the words of Springsteen: I've got one hand steady on the wheel and one hand's tremblin' over my heart. It feels nice to again have steady hands. It's been a long time coming. Thanks for all your prayers and support.

Cancer Sucks