More adventures!

Yes, I know you've been wondering why I haven't posted recently. Last Tuesday, the day I finished my last steriod pill, I began throwing up. The first time was after breakfast, so Ed and I simply thought I ate too much or too fast or maybe I had a stomach bug. I felt terrible, and couldn't get myself going all day. After that, I would vomit at least twice a day, sometimes in the middle of the night, and early in the morning it was just dry heaves. By Wednesday evening, I knew something was wrong so I called Dr. K's office on Thursday and they made me an appointment to see her Friday morning at 10. They did bloodwork and found that my sodium was very low and my electrolytes were off. She decided to admit me to the hospital right away, and actually made me go by ambulette, even though I had just walked five blocks to the clinic and could have taken the MSKCC shuttle from clinic to the hospital much faster and for free. Can't wait to see that bill.

Anyway, we got to the hospital around one and after checking in, we did the usual waiting game. Saw the urgent care doctor finally and she called in neurosurgery. My neurosurgeon and his fellow came and determined that I needed a CT scan of my brain to check for swelling. They believed (and were correct) that I had swelling in my brain from the radiation treatment on 5/26. That caused the vomiting, which caused the other problems. I was admitted and taken to my room around 6 p.m. (when they finally let me eat). I was put initally on a very restricted diet, but that was only for one day.

I received a very high dose of steriods in the hospital, but that has been cut in half now that I'm home. However, they have me on a very slow tapering off schedule, so I'll be on the steriods for several weeks. I look like Jerry Lewis did when he was on steriods, even though Ed says it's not that bad. I'm feeling better, with no vomiting since we were in urgent care Friday afternoon. I was put on salt pills in the hospital and am restricted to drinking 1.5 liters of liquids per day. It turns out that when you have anything going on in your brain or lungs, your body sends a signal to your kidneys to retain water. When you do, you dilute your blood and that leaches out the sodium. By restricting fluids and taking the salt pills, it forces the body to let the water go. My sodium level went from 126 to 137 during my stay, and I'll be taking the sodium tablets until I have bloodwork again next week.

Another interesting thing I learned: The adrenal gland produces a steriod naturally. When you start taking steriods, the gland gets the message to stop producing the steriod. You taper off the steriods purposely to get the gland to start producing its steriod again. The doctors at the hospital think that my gland failed to get the signal and didn't pick up making the steriod again. That may be part of the reason why my brain started swelling and didn't stop after going off the steriods.

So now I'm on all kinds of medications: steriods, antibiotic, Prilosec, sodium. My blood pressure tends to rise while I'm on steriods, so they gave me a prescription for blood pressure medication, but that one I think I'm going to skip. I don't need to add the side effects of blood pressure meds to my list of worries.

It was another adventure on this long road. Another three nights in the hospital. I'm hoping that the billing office got all the approvals from Oxford. Thank goodness MSKCC is in-network now. Two long hospital stays in a month would wipe out our savings, since at last look they charged $3,300 per night! Imagine the accomodations you could enjoy on a vacation for that kind of money.

It's great to be back home, and I'm looking forward to feeling much better than I had been last week. Actually, I feel better now than I have since the operation. We'll keep our fingers crossed that this continues. I start physical therapy tomorrow morning, so that should help as well.

Finally, Dr. K was in to see me yesterday (she was off duty over the weekend). She wants me to start Ifosfamide next Tuesday. Treatment lasts a total of about 8 hours every day for three days: pre-meds for nausea, the drug itself is about a 3-hour infusion, then hydration afterward. I'm going to stay in my boss's apartment Tuesday and Wednesday nights so that Ed doesn't have to come in and waste two days sitting there and I don't have to worry about traveling back and forth. I'll take a cab from his apartment directly to clinic and back, and Ed will come in on Thursday afternoon to take me home. The treatment is every four weeks, so we'll try this out and see how it works. I will lose my hair, so I'll have to come up with some ideas for covering my head for the summer. I'm definitely not doing a wig -- too hot and uncomfortable. Send me your ideas!

I'm going to call today for an appointment to cut my hair down. I've been told by my friend Kay that it doesn't really matter how much you prepare your hair or yourself for the falling out. It's devastating, but I'll just have to suck it up. Now I'll get to see what kind of scalp I have!

Thanks for keeping tabs on me and I apologize for not getting on the computer while I was at the hospital. I could barely get in a nap or a walk what with all the doctors and nurses and blood-drawers coming in every few minutes -- or so it seemed. Hopefully, I'm out for good and on the way to a complete recovery. As always, I am so appreciative of your support and good wishes.

One last note: Bon voyage to Lydia A. Have a fabulous trip. I soooo wish we were going with you!