Update from Dana

Just a quick update because I know some of you worry when you don't hear anything.

John remains in the hospital this morning because they haven't been able to get his fever under control. He is on several IV antibiotics and now they have added an antifungal but his fever keeps coming back as his dose of Tylenol wears off. They are afraid he has some kind of infection, but frankly, they seem somewhat stumped. Last night they drew blood from his PICC line and more directly from his other arm to see if the source of infection is the PICC line itself. The PICC site has been red and angry looking for more than a week now.

Not to knock our local hospital, but from my perspective, what a difference from Stanford. John is in an isolation room because he is so at risk for infection. When I got there yesterday, both doors (inner and outer) of his room were propped open with garbage cans and soiled linen bins. Why? It seems that they were not able to make his room comfortably warm when the doors were closed so their solution was to prop the doors to the halls open so that the warm air could rush in from the rest of the (presumably germ laden) hospital. No one was bothering to wear masks or gowns. Maintenance people and housekeepers were in and out of the room, while John was there, without washing hands. His neutropenic diet includes things that were forbidden at Stanford (dairy for example) and showers have to be ordered by the doctor. I miss the team of doctors that came in twice a day at Stanford too. John seems to think that standards have changed for neutropenic patients, and doesn't want to ruffle the feathers of the hands that feed him, so to speak, but I am ready to go in there and kick some a** and take some names. I think I already have a reputation there as the grumpy, demanding wife.

Apart from the fever battle, John is battling boredom and depression. I think he is growing tired of all this and his warrior attitude is fading as he endures day after day of discomfort and isolation. I keep reminding him that this is his nadir week (or ten days) and that he is expected to feel better soon. Wednesday is hump day with any luck. I think they will scan the masses next week at some point too, and hopefully, give us some good news to boost our spirits. Meanwhile, I have been passing on your good wishes, reading him your blog comments and his email daily. Both seem to lift his mood a little so thank you, again, to those of you who are taking the time to let us know that you’re thinking of us. Email is probably the best way to reach him right now. He gets it on his phone. His email is jclfiore@gmail.com

If I sound tired and cranky it’s because I am. It is incredibly difficult to see someone you love go through this, and this is not the first time for me. Cancer has shadowed me much of my life. Some of you know I lost my mom to cancer after a 15 year battle about thirty years ago. I am watching my boys going through some of what I experienced back then and it’s bringing it all back to me. I want to try to take care of them too. All this pulling in many directions, lack of sleep, stress, worry, and anxiety are getting to me. I have arranged to take this week off from work, probably a good thing, but I miss my little kiddos already. They are the bright part of my life right now and when I’m with them I forget my troubles for a while. They are in good hands with the trusted teacher that filled in for me two years ago while we were up at Stanford. Thank you, Teri!

OK, so this update has turned out to be not so quick. Our cancer writing coach, Sharon Bray says writing “helps you to make sense of things and to cope more effectively with the emotional roller coaster” that cancer brings. And she would know. So here it is. I’m sorry I don’t have John’s sense of humor about this. I guess we all deal with it in our own way. Some better than others. Hopefully, John will be back writing here soon.