In and Out Again

My breathing started getting very difficult on Wednesday the 21st and I was unable to sleep for more than 20 minutes at a time sitting almost straight up in bed. Friday night I slept in the den so that I would already be straight up and awoke at 12:15 feeling like I was suffocating. The feeling did not abate all day, so at 3 p.m. I asked Ed to take me to the local emergency room. I was put on oxygen and given Lasix to get rid of some of the fluid that was causing painful edema in my feet and arms. The doctor tried to get me transferred to Sloan since they have my medical history, but was told by Dr. Keohan that the sarcoma department does not accept transfers on weekends. If I had showed up at the urgent care center there, they would have taken me, but no transfers. I wonder what a true emergency is considered?

I was admitted and finally reached my room at 4:35 am Sunday. I had many tests including chest and pelvic CT scans, a full spine MRI, ultrasounds in my legs and arms to check for blood clots, a chest xray, and more bloodwork than you would believe. The positive thing that came out of all these tests, besides showing that I don't have any new mets causing problems, is that the fluid around my right lung was removed on Tuesday. The doctor withdrew .5 liters from one pocket of fluid, and that has significantly increased my lung capacity and allowed me to lie down at a 20 degree angle and get some real sleep. I still have a low sodium problem, edema and a few other issues, and I'm on oxygen most of the day especially after I'm walking a few minutes, but the procedure was a huge bonus. I can't understand why no one suggested that before, unless they thought it wasn't enough fluid to bother with. I've obviously had fluid there but it's possible the radiation made the situation much worse since the damaged tissue cannot absorb the fluid build-up as it normally would.

I was discharged yesterday and Ed bought me a 4-1 adjustable pillow from Brookstone (thanks for the recommendation, Lydia!). It's not perfect (in the hospital I could adjust the bed up and down as needed), but it helped a lot and I got a pretty good night's sleep. Of course, it always helps to be in your own bed without nurses wandering in and out all night. I'm trying to get some more exercise now that I'm home, but I have to take it slow. I'm going to push a little harder, because otherwise I'm just spinning in place.

Because I had several CT scans in the hospital, I'm not having them repeated for my follow up with Dr. K on Tuesday. She is going to recommend trying a different chemo, which I am going to refuse because I don't think one treatment is enough to judge anything by. I want to complete at least two more followed by scans to see what the results are. It's also going to take some more time for this radiated tumor to calm down, since it's obviously swelled from the radiation and made things temporarily worse. I'll report on my meeting with her next week.

I'm also seeing the neurosurgeon on Monday to discuss the cyst on my head. I know that it's filled with spinal fluid, but the idea that it should "just go away eventually" is not good enough. I want a timetable and what happens if it doesn't resolve itself during that time. The surgeon didn't really want to see me again, but I insisted and his nurse finally gave in. I guess if they have done their jobs, doctors don't particularly want to deal with you again if the problem is unusual but happens and they don't plan to do anything about it right away. Amazing, huh? Makes you wonder what you paid all that money for.

It's been a long day already and time for a nap. I'll be out of touch Monday and Tuesday, so be patient.

I hope you enjoy a wonderful weekend!