Closed For Holiday

Wow...how many trolls do you thing are under that bridge? It is a cool picture though. The architecture is beautiful and the sky is eerie. Is the storm coming or going?

Nick went for his regular appointment on Thursday. It all becomes very routine and then it hits you...oh yeah, Nick has to get a big old needle stuck in his back. And that really sucks every time he has to go through it.

After his blood work, Nick had a CT scan of his sinuses. He still has evidence of sinus infection. What that means is any one's guess. Dr. Frosty wants Nick to see an ENT doctor and so he has an appointment for FEB 3rd!! That is weeks away and in the meantime, who knows what that stuff is doing in there. Nick is using all kinds of sprays that the ENT people gave him while he was in the hospital. The problem is they don't seem to do anything. Any of you out there who have any suggestions on how to get rid of this, please feel free to offer your advice.

The LP and IT chemo was then done by one of the nurse practitioners. She missed a few times and then finally got the needle in the right place. I was asking her about the Ommaya and she actually seemed to have a lot of knowledge about them. However, since Nick is not her patient and I guess she didn't have time, I was not able to get her to talk with us about it. Nick and I are both up in the air about this thing. The good news is that the test on the spinal fluid came back with only ONE BAD CELL, so they canceled the flow cytometry test because there were not enough bad cells to do that study. Hopefully, if the next test has similar results, Nick may be able to cut back to only once per week for the intrathecal chemo treatments. It is all guess work as to how and when the doctors make these decisions as to when to decrease the frequency of the chemo and or stop these treatments. If only we had a crystal ball. Where is my Magic Eight Ball when I need it?

While Nick was lying flat for two hours, I went to see about his next appointment, which would be due on Monday. The nurse informed we that they would be closed for the holiday and Nick would have to get his treatment on Tuesday. I was not happy about this, but, after talking with Dr. Frosty he assured me that it was OK. After reading about the half-life of the chemo being only 48-72 hours, I don't really agree; but, we don't have a choice. You see many times it's not really about the science. Sometimes it is about holidays, closed labs and test machines, weekends schedules, under staffing and a myriad of problems that have a huge impact on the patients. Even the inauguration is having a ripple effect on patients who must reschedule their appointment times in order to avoid the traffic and road closures on Tuesday, especially if they are coming from Virginia or Washington DC. Anytime the clinic is closed for the holiday, the next day is always like bedlam, trying to squeeze everyone in who got pushed off the holiday.

The up side is that Nick will now have a four day hiatus from the Hop and lumbar punctures. His lab work showed some areas of concern that bear watching. A lot of his counts are dropping, most likely due to the new "Gleevac" medicine called Dasatinib. This medicine can drop Nick's counts like his WBC, his ANC, his Hct, and his platlets. While not alarmingly low, the trends must be watched to make sure his counts don't get too low. If this happens, they will have to adjust his dose. Nick continues to take the Flagyl for another week. His stomach seems to be trying to settle down and other systems are trying to return to normal, which I hope means that the Flagyl is working. His energy level is still down and I feel like we are in a holding pattern waiting to see what comes of what and when he will start to feel a little better. Nick's appetite has been OK, but, he has a lot of eating to do to gain back all the weight he has lost recently.

This weekend is Glenn's birthday and the Ravens game and on Monday we are all hoping to go to Miss Shirley's for breakfast, one of my new favorite places to go to eat some kind of crazy delicious breakfast food. Hopefully, Kate will be joining us and we will all have some good family together time along with mass quantities of pancakes.

Please keep the cards, letter, emails, and facebook pokes coming. Calling is good too for any and all of Nick's friends out there who might be wondering if they should call or come visit...the answer is YES! If you shouldn't come, we will let you know. Hope to get a lot done this weekend, but, I know I will be paving that road to hell with all my good intentions.