Back to the pity party

Worst weekend yet. First of all, when the wound vac arrived the number to call for Home Health was wrong. It was some doc's office which was of course closed on Saturday, and I had no one to call to correct. I knew it had to get installed ASAP so I called Emory to find out who was on call for my doctor. Fortunately, he was and he told me to just to meet him in the E.R. and page him. The E.R. wanted me to go through the whole triage process and would not page my doctor. I went to the bathroom and saw him walking down the hall and he just grabbed us and took us to some empty room full of beds and installed the thing.

You have to the the wound area sealed really tight otherwise the machine makes this horrid noise trying to suction every thing to death. My doc is a great surgeon but maybe wound care is not his thing. The thing made this loud awful noise 24/7. Some time it was like loud snoring. At night with Bob snoring on one side and the machine on the other, I had it in stero. This went on for 2 nights until we could actually get Home Health Care (Kathy is my nurse) out on Monday. The noise was deafening, and we got little sleep Saturday or Sunday.

Sunday I woke up nauseous and the worse I've felt since this whole thing began, but at least no fever. I think I am allergic to the antibiotic they gave me. It is a sulfa drug. I'd felt a little queasy the couple of days before but nothing like this. Sunday and Monday were miserable days. I could not eat, sleep or get comfortable. They did switch me to another drug. I could not take any drugs as I kept getting sick on them. I did get some Phenergen (sp) finally and that got me through it. Everyone says it knocks you out but I am still not sleeping. I quit taking it last night and am still a little queasy but better. Also when I could not keep pills down, I could not take my pain meds. To tell you the truth, I am not in that much pain right now, so I just stayed off the drugs. We think now some of my symtoms may actually be some withdrawal from the morphine so I went back to taking one a day instead of two. I will do that for a few days and then cut myself off rather than cold turkey. I hope that helps. I am really tired, but I can;t sleep. It exhausts me just to brush my teeth. Have not had much to eat since Saturday, so I am pretty weak. I am too tired to talk---can you imagine me not talking. Even typing this has taken me 3 days.

So Nurse Kathy came on Monday, and she can barely make it up the stairs as she is recovering from some kind of surgery. She is good and thorough but not real gentle. I will certainly be the one to take the tape off my wound as she is walking in the door. She just sort of yanked and my skin is really sensitive not to mention that I have hair growing now so it hurts like heck. Kathy will be here every Mon-Wed-Fri till this heals. She says it could be 4 weeks plus-- the surgeon said 6 to 8 weeks. Kathy and I are going to be really close before this is over. The machine is huge. It must weigh 10 lbs -- just like my tumor. In my wound is a sponge that Kathy replaces each trip. It is painful for her to remove it and painful for her to put the new one in. My language almost got embarressly bad the first time she yanked on it. From the sponge she inserts this tube that hooks to the machine with the vaccuum in it. The machine is about the size of a binoculars case. The doc said I would be able to hook it on my belt and go. Right! It is gross as all the yukky fluid in my comes through it and you can see it. I guess if I have on a long dress it would cover it up. I am really feeling sorry for myself right now.

I have felt better today, and I drank and Ensure, Yogurt Smoothie and had some fruit. The only bright spot has been that friend imo from Mobile came Saturday for a nursing shift and it has been fun having her here. She brought wonderful gumbo, shrimp, fish etc and I have not been able to eat a bite. In fact to smell has even made me sick. So she and Bob are having incredible feast, and I have been puking my guts out. Like Cindy, she has been making me sit up and do my breathing treatments, and I do need that.

Several days ago I made Bob a reservation to go to England on the 13th as a surprise birthday present. He has been so great, and I was doing so well that I was certain I would be traveling for work, driving and independent by then. We realized Sunday, I just cannot live without him right now, so we are going to cancel. To be honest, as much as I wanted him to go, deep down I was freaked out. He has been my lifeline for the last 6 months, so I was really scared. Hopefully he can go when I finish chemo. I will find out when that starts when I see the chemo doc on Fri. I hope by then I am a lot more mobile than I am now.

One last note - a favor please. Keep my friend Eddie Rollins in your prayers too. Last week he had a cardiac arrest at work and if it were not for the defibulator his office had he would not be here today. He had a triple by-pass late last week. We talked today, and he is doing pretty well. He bragged about how the number he could reach on the breathing machine was much higher than what I can do. He has been in bed for a week -- me almost 6 months! Also the main thing is how long you can hold it at the number, rather than how high it goes. Its longivity that counts. But I did not want to crush his ego, so I let it go. Keep your fingers crossed for both of us.

Here's hoping for a better tomorrow!