Thursday, September 23, 2010

Day 30

Thursday September 16, 2010

I was sick!!! I felt miserable. I had felt it all day on Wednesday but had tried to convince myself it was all "in my head"! Well it was all in my was a sinus infection. Luckily, I was able to get antibiotics and some sleep. The worst part of all was that I had to be quarantined from Nina. There was no way I wanted to increase her risk of catching something; I was sure I had already exposed her and prayed that she wouldn't develop anything. On Wednesday she had a slightly elevated temperature of 99.4. This worried me deeply; could her little weak body handle a cold, a sinus infection. I had come to realize that Nina was from now a chronically-ill child and we needed to guard her against anything else that could complicate matters. It sure didn't help that we were entering the cold and flu season....would we ever catch a break???

Since I was sick, this meant that Todd was on Nina duty once again. He told me that the previous day at radiation had gone great. He was very impressed with all the staff at the Cancer Center and was even more in awe of how Nina had acclimated to her new routine. He was so in love with her! It melted my heart to see them together. She had always looked at him with these totally buttery eyes, like she couldn't get enough of his face. It was so precious. Her cheeks were getting fuller because of the steroids, which made her even juicier and I loved watching him kiss her and her beam from delight. Although this meant Todd had to take another day off of work, I was glad he got to do the treatment with her again. It was important for him to be a part of the entire process, even the nitty-gritty as Nacho Libre would say.

My day was spent talking to doctors, particularly Dr. Slomiany, about what the Cedars team and I had discussed. There was much for us to think about, but the main thing was what Dr. Danielpour had said...if we could buy more time (that was good quality not marked by awful pain) by doing the chemo and Avastin then there was  hope. Time meant hope plain and simple. We would take any good time with her and hope for the next step to be revealed. Bottom line was that we had not expected to see Nina do as well as she was doing. We were encouraged and the team meeting renewed our gratitude for the gift of time we did have. Each kiss, each laugh, each dance with her brother was like a precious gem given to us directly from God's merciful hand. We would be fools to turn away any more gems, but we wanted to proceed with caution, thoroughness, and extreme thoughtfulness.

As I walked out of Dr. Slomiany's office I caught a glance of my reflection on the door. I looked awful!!! Not only did I look awful because I was sick but I looked like I barely weighed 100 pounds....I looked like Nichole Richie without the designer clothes....awful!!!! I immediately thought of Linda! I almost called her but then I decided if I did it would only reinforce her. Truth be told, the previous day at lunch Linda had told me she was worried about my weight. When I kind of scoffed she flat out told me I was anorexic and had food issues. At that point I really did scoff, multiple times. She insisted. I negated! We agreed to disagree! The image I had just seen did help not build my line of evidence to contradict her so I decided to go home and weigh myself. I knew she'd be way off base! Well....she wasn't! Damn it!!! I hate being wrong.

I weighed 105 pounds!!!! Not good! I haven't weighed that little since freshman year in high school. I felt like crap, my head was pounding, my sinus' felt like they were going to explode, my body ached, I was exhausted and I wasn't eating! I AM NOT anorexic but I allowed myself to admit that I hadn't been taking care of myself as I should. The reality was that I was not hungry. Food didn't taste like much anymore. And if I ever did get hungry a bit (which was very seldom) the hunger pains kind of felt good....I know that sounds terrible but the pain in my stomach temporarily distracted me from the pain in my heart. I looked at myself in the mirror and commanded that I needed to eat, even if I didn't feel like it. I couldn't get sick again. Being quarantined from Nina was not cool, and I had done it to myself by neglecting basic needs. So....I did what an anorexic would NOT do....went to The Hamburger Habit and finished off an entire Charburger with cheese and grilled onions and a soda! Then I went to the store and bought more protein shakes. Okay so Linda was a little bit right...just a tiny bit....but I am very competitive so I was now determined to prove her wrong, and more importantly be healthy for my kids.

The rest of the afternoon was occupied by homework and waiting at CVS for prescriptions to be filled. I should have an honorary chair with my name embroidered on it at CVS...this is how much time I spend there! The pharmacists pretty much all know me by name now and have been so sweet and supportive, even when I am especially cranky!

Teddy was particularly tired this evening. He had a week full of play dates and was just exhausted. The anxious boy who I had to have on a self-management program for going on play dates last year, now had the busiest social calender in the entire second grade :) We couldn't and can't stop thanking God enough for how strong Teddy has become! We also can't thank God enough for all of the amazing families at Kellogg that are being so tender in nurturing our son and ensuring that he has an incredible group of friends. In so many ways, this tragedy has already made our community a better place. We all seem to be kinder to each other, not that we weren't before, but there seems to be a new found appreciation for what it means to be a good neighbor. Nina is working miracles all around her and she doesn't even really know it!

Although the morning and evening had gone without incident, our evening would not go down as easily. Right after dinner Nina began to complain about her tummy hurting! She started crying at regular intervals. It didn't seem to matter what we did, whether she had the heating pad on her belly or whether Todd massaged her, she was in excruciating pain. To make matters worse, I couldn't help because I was sick and didn't really want to get near her. I looked at Todd frantically. We didn't understand what was wrong. She had been going #2 all week long. Could she still be constipated?? Teddy began to get concerned each time she cried that she needed to go potty. He asked if she was okay. We explained that she was hurting because she was constipated. Each time she wailed, I could see the tears well in his eyes. After an hour of crying, around 8 pm, I suggested that Teddy and I go upstairs and watch a movie. He eagerly agreed and within 15 minutes of crawling into bed next to me was passed out, deep in sleep.

With Teddy asleep, I went downstairs and sat on the living room mattress. I sat and watched Todd tend to Nina in her bedroom. I offered suggestions where I could and just watched. It was awful, mind-blowing to not be able to hold her and be next to her! Todd was doing his very best and trying to encourage her to go potty and push it out. She just cried, softly for a bit then louder and louder until she would request a trip to the potty where she'd then start screaming in pain whenever she felt the urge to push. At this point, the intervals of pain seemed to be about every 30 to 45 minutes. I knew what this meant. Eileen and I had been here before. I made myself some tea and told Todd that I was going to go take a quick nap so I could feel a bit better and then I'd join him around midnight. He kind of looked at me puzzled. It was 9:45 pm. I smiled and told him he was doing a great job but that he should brace was going to be a long night!

Starting at 11pm, the intervals were now every 20 to 15 minutes. Almost like clock work, she started to whimper "I'm serious. I can't push it out. I have to go poo-poo but I'm serious. I can't get it out." Then as the minutes would pass, she'd get louder and more intense with this perseverative speech. The intensity would grow until she'd sit up practically screaming and declaring that she needed to go potty. Todd would then escort her to the potty for about 5 minutes, all full of pain and crying. Eventually she'd give up and ask to go back to bed. The toilet tango was back with avengance!!! I came down at midnight to sit on the living room mattress and offer support and guidance. As I had was going to be a long night! In between potty runs, Todd and I would look at each other with heart ache. We didn't need to say a word to one another. We were breaking for our honey-girl!

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