Made it through

The week started with my CT scans on Monday. I haven't read the report yet, but according to Dr. K, there was growth in the lung and chest tumors as expected. Currenly, the largest one in the chest is compressing my superior vena cava to the extent that I am having difficulty draining fluids. Normally, fluid in the head and arms drains through the lymph system and into the SVC, but because mine is compressed, my neck and arms are extremely full of fluid -- much more than can be attributed to the steriods and extra fluids that this new chemo requires (2 liters extra per day). I had an ultrasound yesterday to make sure there aren't any blood clots causing the problem (there aren't); it's just a long, slow, uncomfortable process. My skin is stretched to the limit on my arms and is quite uncomfortable. After this, I'm going to try laying down with my hands above my head to see if that helps at all.

Dr. K said that if the swelling doesn't resolve itself in a few days after giving me Lasix yesterday, she is going to admit me to the hospital (once again) for radiation treatment to the chest tumor. She is afraid that situation will get worse, and this would be the first line, last resort, fast method of trying to debulk the tumor enough get it off the SVC. I don't know how she would work that since I just finished the chemo, but I'm not due again for 21 to 28 days.

This afternoon I have to go for a Nulasta shot for my white counts -- although they are actually elevated so I'm not certain why this is a "must." Nevertheless, I'll get it locally so I don't have to go all the way back to NYC and they will check my labs again too since my sodium is down again (from 137 when I left the hospital to 127). This is a tough balancing act since I'm restricted on fluids because of the sodium but the chemo treatment requires extra hydration to protect the bladder and I'm not draining it all out. I'm sorry for me but feel a bit sorry for Dr. K since she has to figure out how to manage this correctly. I'm just following orders.

Anyway, Tuesday morning I arrived at 8 and they hooked me up to saline for 1.5 hours. Then I was given pre-meds for nausea, steriods, and then 15 minutes on Mezna, which is the drug to protect the bladder. That was followed by three hours on Ifosfamide, more hydration and two more bags of Menza over the next three hours. I got out of MSKCC at 6 p.m. and went directly to the apartment. Had Chinese takeout and I was in bed by about 8, getting up every two hours or so to urinate. Wednesday Ed stayed home, and treatment started about 8:15. I finally finished up at 5 and once again headed straight for the apartment. I was going to take a short nap and then eat leftovers, but I slept until 12:30! Heated up the Chinese food at 12:30 and had a little feast before calling it a night.

Yesterday the nurses had a meeting and were running behind so we didn't even start until after 9. That was interrupted by the ultrasound, and by the time everything was finished yesterday, it was 7:15 p.m. Ed had arrived around 3, so at least he wasn't stuck there all day, but it was a long one. We finally got home at 9:15, had some pasta, and I hit the sack at 10:30. Slept pretty well with frequent bathroom trips, woke up very hungry, but got nauseous after breakfast so I took an Ativan. That seems to have soothed the problem. I'm headed down for a nap after this, though, having cancelled my PT session for today. I don't have to be at Little Silver until 3:30, so I have time to catch some zzzzs. That's probably how I'll be spending the weekend.

According to Dr. K, the real fatigue will hit in about 10 days. Not looking forward to it if this isn't the "real fatigue." Sleep can't hurt though, correct? If you need it, you need it. It's going to keep me out of touch again, but know that I am thinking of all of you, and I know you are thinking of me.

Happy Father's Day to all our dads out there! And thanks, as always, for following along with my journey.