Notes from Julie recouperating in LA 10'/23

Hey everyone, this note is from me, Julie :-)

Many thanks to Debi Geyer for being able to do posts for me while I have been totally unable to do them. My sister is here in LA this week with a special gps wireless card for her work, making it possible for me to do this post right now - yay! So, Debi has done the posts since surgery using my info and I will post them myself when I can.

There is so much to share, it's amazing. Here are some funny things. Basically, you can just call me a penguin for right now. It's humorous, but true. I even wobble a bit when I walk because my balance isn't all there yet, causing either my aunt, uncle or my sister to have to "spot" me walking up and down the stairs. Yes, it's true. Sleeping is very difficult because it's very hard to get up from being in a prone position when you can't use your arms and your chest muscles. So, I learned how to get out of bed the night we got back from the hospital. Mind you, it wasn't the way I wanted to learn how to get out of bed...You see my mother, my very own mother said she needed to get some sleep and she wouldn't be helping me. So, after I fell backward unrestrained into my partially propped up pillow heaven, with pillows propping up also my left and right arms and even my ankles and knees, she drew a line in the feathers, as it were since she had slept three nights in the hospital with me - well tried to sleep- and didn't really sleep at all. She was going to bed and I was not allowed to ask her to get up and help me. This, she told me, was on top of the fact that I had just had a loveley episode of throwing up everything in my stomach after actually being hungry for dinner. I just couldn't take another pain pill because that's what triggered the hurl. Well, I'm sure it was also the plkumbing back up that I was experiencing at the other end that brought it on. It was bad...So, there I lay, in pain, no pain pills and my mother telling me not to ask for her help and...my bladder awakens me now that I could actually feel it. I mean I could actually feel the pain meds completely wearing off and the members of my body, my hands my feet, everything, becoming alive again after being sort off off duty for awhile even though I didn't realize it. So, what was a girl in need of going to the bathroom going to do? Somehow I figured out how to roll onto the pillow on my left which was also on the edge of the bed, to buoy my body enough to hook my right leg under the bed while I was rolling forward, about to fall off the bed, to right my body upward so I could sit up. It hurt, but I was amazed that it actually worked. I still use this as my method for getting in and out of bed when I take a nap. Its hilarious. The next morning, I showed the move off to my mom and my aunt, and they cracked up. It's the little triumphs, right?

Speaking of little triumphs, I've managed to do some of what I'll call "laps" around the upstairs of the house, about six of them each day I was realeased until today. Then, yesterday I actually went outside in the garden and managed to do some walking back and forth out there until today when I could actualy go outside and I felt I had the energy - sans the wobbliness - to walk a few blocks. It was pretty invigorating. But something just didn't feel right. I haven't been sleeping well and I keep waking up at night and can't go back to sleep, and yet I'm just wiped out by about 3pm each day. It didn't feel like surgery recovery as much as what I experienced as a fatigue brought on by a low red blood cell/hemoglobin/hematocrit situation. So, I knew yesterday that I needed somehow to have my blood tested withouth having to drive to the desert to my oncologist to do it. So, I made some phone calls and with the kind help of Robin in my Dr.'s office I was able to get an order for a CBC test faxed to the hospital up the street in Pasadena which also happened to be covered by blue cross and they would fax the results to me at my aunt and uncle's house as well as to Dr. Luke's.
Well, when the numbers came iin it was like a "ding" yeah, no wonder I feel like my body doesn't want to cooperate. My RBCs were 2.95 (normal 4.1-5.2), hemoglobin 9.3 (nomral 12-15.5), and hematocrit 27.7 (normal 36-45) according to the report from Huntington memorial. My whites and platelets were fine, but, WOAH my reds haven't been this low at any point in the whole chemo process. So, what next? Well, tomorrow I go for a follow up appointment to see both surgeons: Dr. Silverstein and Dr. Sherman. So, I've asked Robin if she can send Dr. Silversteing an order for procrit (red blod cell booster) so that they can give me the shot while I"m there tomorrow. I sure hope so. If she does, it will still take a couple of weeks to kick in, and I"ll still want to test my blood weekly to make sure that it's on the upswing, but I hope it's possible. I mean, it's only a shot, and something easy. We'll see.

Oh, so what is it like to be recuperating from this? Well, what I look like at the moment is that they gave me a bra-like apparatus to wear and there are steri-strips and gauzes over the incision areas to keep them clean and dry. There were also two catheters in either side of my chest that were administering a local anisthetic to those sites when I left the hospital and the medication was in an automated pump that I wore as a fanny pack on my left side. In addition, I have plastic tubing about 1/2 cm in diameter that emerges from somewhere in my ribcage (or that's what it feels like) and flows through about two feel of tubing each into something called a JP draind, which is a collapsed bulb that acts as a vacuum to encourage the fluid from the surgical sites to drain into those receptacles. So, I have had quite a bit of spaghetti to carry around with me. What was really exciting was that the drain on the left started leaking on Saturday and I was kinda freaked even though my mom, who is a nurse, told me not to worry about it. I calle dthe doctor anyway on Sunday and the doc said the same thing, but at the same time the pain pump had run out and the catheters into my body had to be removed. "pulled out?" I sort of shreiked. "Yes, anyone can do it, it's easy" the doctor's assistant said. Yeah, right, easy for you to say...there is no way I could do it myself, but my aunt was very kind to help me with that as well as operation re-patch to place a gauze under the area that was leaking from the drain on the left. I was a little hesitant, but so glad my aunt was up to the task. I was just glad that I didn't have to look, but I did have to give her the instructions for pulling the catheter out of my body and we didn't realize how long it was or how much tape was hemming in the wires on each side. It was also made tricky because, on the right there was a rectangular piece of skin tape over the catheter wire, but it was also on top of some steri strips on the incision site. so pulling the tape off without taking off the steri strips was a challenge.
AniSan did a marvelous job. It was amazing. I was relieved to get the catheters out and be rid of the extra spaghetti I was taking with me to sleep and everywhere I went.
So, now it's just the two drains, and I'll probably get those out later this week, as soon as they reach a state where the fluid accumulation is lessened substantially. I'm not sure that will have happened by tomorrow morning, but who knows, they might take them out anyway...

I'll let you know how it goes.
Love to you all, and more stories to come!!!
Jules