Several pounds lighter

Thursday September 2nd, 2010

I'm sorry I wasn't able to blog yesterday. I was busy getting another 4.6 liters taken off of my abdomen. I could NOT sleep Tuesday night at all. I tried sleeping in the recliner and my body wasn't having it. I was swollen, but not as large as I was before my first paracentesis. When the liver clinic @ UIC opened, I called Diane, the nurse in Dr. Lam's office. She was able to get me in as an add on. YEAH! Sorry Mr. Widdo Poopie, since your mouth is in better shape than my belly & breathing, I have priority today & your follow up appt. can wait. Jenny's calling him "Veruca" now because he's a high-maintenance dog.

I told dad about my situation when he got back from working out. Yes dad is 79 y/o and he still works out about 3 times a week since his heart attack a few years ago and he still works, as needed @ UIC and does 12 hours shifts so I don't want to hear ANY complaining from you young ones out there. Since my cancer diagnosis, he's been my number one caretaker too. We had to get to the lab first to make sure my bloodwork was in order before another paracentesis could be done. It turned out they were fine. I was amazed at the amount of fluid I had inside. Dr. Lam gave me a 6 pack abdomen again. There was another pt. in the room with me who had 8 liters taken off. How do they get around with that? I'm all short of breath, restless, back pain, etc., and they're sitting in the lobby very relaxed & calm. Anyway, I received one bag of albumin. I asked Dr. Lam about the swelling I had after the last paracentesis, let's all be adults now, yes, in my vaginal region. Again, I'm being open about this for educational purposes for those of you who may one day experience this stuff that the doctor may forget to tell you. I told him how I had propped my hips up on a pillow and laid flat on my back, it took a few days, but it went down. He told me that it DOES happen and to be glad I'm a female because men can get some severe swelling in their scrotum and it's hard to get that down, it's painful and extremely uncomfortable.

Then the same thing happened to me as last time. I got real bad back pain on the right side and my breath was short. It took a cup of water & quite some time before I could get up with assistance. I didn't have my strapping strong brother to carry me out. The nurse, who's shorter than I, guided me slowly to find dad so he could get the car, and then she got me in the lobby and an escort with a wheelchair to help me to the car. I sat outside until dad arrived and couldn't wait to lay back on my pillow.I'm rarely outside so I enjoyed the weather through my pain. I had asked the escort if he could meet us @ home to get me in the house. We made it home and I was able to get in the house & to the recliner, my new best friend.

Dad went out to get my new Lasix 40mg once a day prescription and I tried to get something to eat. The snacks we ate while waiting UIC wasn't holding me. I got halfway into the dining room when it felt like someone was stabbing me in my right back, which took my breath away. I luckily had my cell and house phone, "Do I call 911?", Of course not! I'm a nurse, one of the most non-compliant people in the world and slowly got myself back to my recliner & waited it out. As I remembered, my insides are resettling, I could feel my enlarged stiff liver with tumors much better, which grosses my niece out, and maybe it's sagging on the inside. Are there suspenders for this kind of thing? Rationalizing. The pain did subside and not too soon afterwards, David came home from work. He was kind and made me a sandwich with low salt roast beef and I had water.

After crawling to the couch, I was able to take a nap. My niece LOVES that sunken in couch but even regular healthy adults have a hard time trying to get out of it. It's well used and comfortable to her. I'd LOVE to get one that's higher and not so low to the ground, if I lay on it, I might be able to get off of it by myself. Anyway, our sister, Cathy, came by. I'm glad because I was stuck like a turtle on its back and the pains in my back were awakened too. She assisted me off of it and I had made it to the bathroom, slowly but surely and still trying to catch my breath. I was able to do #1 but as I was leaning over to wash my hands, & that stabbing R back pain came back and it really took my breath. Luckily a few family members were right outside the door. With patience and help I was able to make it back to the recliner. I was thinking, "can we move the recliner in the dining room closer to the bathroom?" With time and a comfy pillow, the pain did go away. My dad brought me dinner which I had a good appetite. I dared not leave that chair.

I had two visitors that evening, Ray & Gabe came by. It's like they were doing shift work, as Ray was leaving, Gabe came by after work. It was good to see both of them. Unfortunately they had to see me huffing and puffing and really moving slower than our turtles. My insides by that time of the evening had gotten a little better, that stabbing pain hadn't crept up on me, just the regular back pain. We shared some funny laughs which hurt but humor is supposed to heal and some touching moments. Sometimes I think think this cancer is harder for my loved ones than me, they wonder I how I go through what I'm going through. I tell them "you're my reason for being here, the best I can". If you could see me now, wearing a brown and tan muu muu with a floral pattern, tan moccassins, my white hairs growing out and shuffling around, you wouldn't think I was 40 years old. Speaking of my hair, I feel like the Charlie Brown Christmas Tree. Everytime I wash my hair, large portions are coming out, just like that tree, everytime someone moved it, more & more bristles would fall off. I just need the tinkling music in the backgroud.

Gabe had massaged certain parts of my back, by my right lower back and by my shoulder blades, I'm ticklish and this helped me forget about my back pain, but since it made me laugh, he couldn't do it for long because my body kept jerking away. I asked him if he could try to continue doing it, it'll help stimulate endorphins and make me feel better. He gently rubbed the other back areas which helped with the existing pain. After he left, I went to bed. I still couldn't lay on either of my sides but I slept until 3:30, I had gotten the munchies. My liver or some other organ, which was very palpable, was sitting funny on my right lower side, the side I have to get up on. Oh, I couldn't ignore those food cravings so I did what I had to do, held the area and got myself up. What I did, I'm not sure, but there was a weird sharp pain followed by a throbbing pain down there for a while as I putzed around the kitchen. Rice Krispies cereal. I figured that if I didn't puncture an organ & die by now, I'd live and mosied my way back to the bed. Where I couldn't sleep until 6am.

FYI, there's a detailed website on ascites on MedicineNet.com. I was told today that my ascites is not malignant. The goal of Lasix, a water pill, is to decrease excess fluids by making the person urinate a lot and hopefully I won't need a paracentesis so often. The pharmacist @ Walgreens informed my dad that there's a small component of sulfa in Lasix and the last time I was on Bactrim, and antibiotic that had sulfa, I got a rash. Today I called my nurse practitioner and she verified it with her pharmacy that if my reaction wasn't anaphylaxis = tongue swelling, throat closing, wheezing, etc., that it should be okay to take it. Well I planned on taking it after I showered and someone else was home with me JUST IN CASE. I had also spoken with Dr. Lam who verified it with his pharmacist that it's a different sulfa molecule & that I should be fine. By the time I had spoken with him, it was late in the afternoon. I was told to check my blood pressure before I take it, if it's too low, to hold off and call them back. The pill should be taken in the morning so one isn't peeing all night either.

I did get my 1,000 plus photos downloaded to Walgreens with the help of Paul & Gabe and now I have another project, to get them into photo albums. The memory book I got from Adriana I'm using for all my medical pics, ie. portacath, chemo, my medical staff and paracentesis pics. I took them for educational purposes to show people, if you're interested to see what certain body fluids and procedures are like.