Saturday, March 21, 2009

Free at las....blaaaaargh.....

So I did get released yesterday. I think I was not quite ready for primetime but I've been taking it easier and I'm surviving.

I got out of the hospital around 5:45PM yesterday, and went to Walgreens to pick up the oral Dilaudid that I would need for "breakthrough" pain in the event my Fentynyl patches failed me. While at Walgreens, I started getting a horrible nauseous feeling. I popped an Ativan and asked Gordon to wait in the parking lot while my stomach settled. After 10 minues of focusing, we got in the car and made it back to the apartment. 10 minutes later I was projectile vomiting, into dry heaves. The only stuff that came up was phlegm so I'm not sure if there is some kind of drip going on from the remnants of the lung infection or what, but whatever it was, I didn't feel good. At all.

I tried Ragulin once I was cleaned out, and it seemed to help. That and holding perfectly still, watching some of the 2nd round of the NCAA tournament. Then I crashed at around midnight.

I slept very well -- the only time I havent been interrupted every 3 hours by a nurse wanting vials in almost three weeks. I got up at 3AM and coughed up a bit, but had no problem going right back to sleep and I slept until 9AM, which was great. I woke up feeling pretty rested and so I tried to have a little breakfast bar, with some diet coke (no regular water is allowed because of the low sodium situation I've got). Unfortunately, this didn't work. 20 minutes later I was throwing up again, violently cleaning out any of the morning pills I took -- including the Ativan that I had taken for nausea.

I waited 20 minutes for my stomach to settle and I took a Ragulin since this seems to work AFTER a bout of nausea to hold things together. We are running low on pills, though...I've got plenty of Ativan, which doesn't work that well for me.

I went to the infusion center -- by the way, terrible idea to drive around in a BMW M6 if you have a bad back. There seems to be a huge metal pole sticking out of the seat RIGHT into where my back hurts. Every bump is agony.

At the infusion center, I told the nurse about the nausea and they gave me some intravenous Phenergan (sp) which is yet another type of anti-nausea. They also wrote a prescription for suppositories -- not delightful, but if you think about it, when you can't keep anything down, how do you keep down the meds? I noted to the nurse that I hadn't had a bowel movement in two days, but also noted that I hadn't really eaten anything since I was discharged and said that I was on stool softeners, etc. We agreed to monitor it closely. I'm not going to have anything extreme...yet.

We went to Walgreen's again to pick up the suppositories and also bought some of those sweet Eda's strawberry bars that I've become addicated to. We also bought some potato chips to keep the salt up (not kidding). It's interesting on the salt...I went back to the oldest labs I had that measured Na in my blood and it's from mid-February and the Na is 131 (135-145 is normal). Could it be that we are worrying too much about low Na? Maybe this is my baseline? Do doctors really want a HIGHER salt diet for people?

We came home, watched the Bruins get annihilated by Villanova, had a strawberry bar and some chips and then slept. For about five hours. After which Gordon woke me up to check up on me...I got up, and decided I was hungry enough to eat some more. We phoned in a steak order from Sonny Williams' steakhouse and I had a respectable dinner (steak, potatoes, another strawberry bar, half a glass of wine, and a lot of Gatorade which I also decided today would be good for replenishing salt and potassium, etc.).

Since then, we've been vegging, watching TV. I actually feel pretty good -- my energy level is low, and my back is stiff and sore where they operated, but I feel reasonably good. I'm not coughing nearly as much...although I need to right now and probably will do so immediately after signing off on this blog. There's still a bit of a rattle in my lungs But I do feel like I am getting healthier.

I see BB on Monday AM and I'm sure he will order a fresh PET scan and bone marrow biopsy for sometime next week. As written here before, I'm going to insist on conscious sedation for the bone marrow, and they can complain all they want but I'm not budging. If I had to guess, I'll have those procedures done on Wed and Thursday, and start the 5-day course of high-dose Melphalan on Thursday afternoon. We'll see what BB has to say.

I will also note that the IgG marker, which I hadn't seen in my labs, was included in some medical notes that accompanied my discharge from the hospital. I'm not going to read too much into it because of the half-life of both the chemical agents and the cancer itself, but as a rend, it is quite positive:

2/18/09 11200
2/28/09 8110
3/5/09 4550
3/9/09 6320
3/12/09 6420
3/16/09 4490

Bear in mind, again, that all seven focal lesions were gone on the PET scan ordered on 3/5, which is a great sign. I am hopeful the next PET Scan posts similar results and that the next Bone Marrow reflects lower activity...although I hasten to remind myself and you, dear readers, that my Bone Marrow activity was at 70% at diagnosis and remained at 70% on 2/ it holds pretty steady.

I'm in danger of rambling now...we are putting a pizza in the oven so I'm going to go in an effort to eat a bit more.

Thanks again for your support!