Saturday, December 11, 2010

Day 79

Thursday November 4, 2010

Sometimes people say things inadvertently that totally nail the situation. That is what Dr. Slomiany (our oncologist) did today when he walked into the room and told us the MRI results from the previous day were a "mixed bag".

"Mixed bag" surmises my life perfectly. There are ups and there are downs, sometimes within seconds. I'm pretty quick on my toes, but sometimes the speed of emotional change is too much for even me to handle!

The results of the MRI were indeed mixed but they were exactly what I had expected. Please refer to the blog entry entitled "Update" for more details. Bottom line, the necrotic center had grown but there was no edema. The vascularization around the tumor was probably due the scarring that came from the radiation versus new tissue growth. In essence, the radiation seemed to have done it's job and given us time.

For me, this IS a miracle. Nonetheless, for others it was utter heartbreak because the expectation had been healing. Please do not misread what I am saying! I want healing more than anything in the world!!! I want it desperately with every breath I take and every beat of my heart but I am not sure that God will move in that way in our lives. I KNOW He can but from the beginning my heart has been numb about that, I don't know one way or the other, so I prepare for both outcomes. Just because I operate this way does not mean I lack faith or hope, it just means I am being realistic about the life I have been given. It does not mean I love God less, it just means that I do not purport to understand what God's purpose is with this nor do I delude myself into thinking that we deserve this miracle more than the next family. God is God but life is life, and life sucks a ton! We just convince ourselves of the myth that life is good; we paint a rosy (no pun intended) outlook on life so that we can survive. If we didn't do this, if we actually allowed ourselves to see and feel all the misery around us, there is no way any of us would be able to psychologically survive. Consequently, we continue forward searching for hope and happiness, as we should!!!!!

As Dr. Slomiany went over the results with us, Linda (who had come up from LA to be with me today) texted back and both with the Cedar's team, with Dr. Danialport to be precise. Every one reached the same conclusion. It was the expected response to treatment, consistent with these types of cases. The good news was that we had been given time and that we would definitely have the holidays. Again, another miracle.

Todd did not do well.

After the meeting with Dr. Slomiany, Linda and I went out to lunch. Linda and Eduardo are my very own personal fairy god-parents! They are wise and loving and continue to be an unbelievable source of support for me. Because of them I can sleep at night knowing that we have left no stone unturned. I recognize how precious and rare that is; not many families have that luxury! The conversations during lunch were not cheerful. On the contrary, they were riddled with pain, pain of awful realizations. I have been a very talented person at painting my life rosy but I can do that no longer. My life as it had been prior to August 19th had been filled with beautiful frescoes, but a fresco is just a flimsy veneer! Now, all the frescoes had been washed away and what was left were ugly brown walls. I now had to decide if I wanted to put the frescoes back on or if I would have the courage to actually learn to paint something real.

We returned home to find Mendy and Nina watching iCarly. Mendy had now begun to memorize lines. I knew intervention was needed :) I love coming home and seeing my honey-girl. She always has the most glorious smile when she sees me. I love to hear the cadence in her voice when she says, "Mama!". I especially love to smell her! I find myself constantly smelling her! I am so fearful that I will forget how she smells. The three of us chatted with Nina for a bit before I asked Nina if she wanted some popcorn, which she nodded enthusiastically for. I returned with the popcorn but also a spoonful of chemo :( She whined but swallowed with utter resignation :( Then she proceeded to stuff her sweet mouth with mounds of popcorn and requested another episode of iCarly. Oh joy for Mendy :)

As Mendy, Linda and Nina relished in the comedic maneuverings of iCarly, I went upstairs and made a few phone calls. Lately, I haven't had luck with phone calls. Again, this one did not go too well and apparently I was crying so loudly that Nina heard me downstairs and wanted to come up to me. Luckily, Linda and Mendy are brilliant. Mendy redirected Nina to a game, while Linda raced upstairs to my bedroom, shut the door and commanded me to get off the phone. I was mortified that Nina had heard me upset. My number one rule since this all happened was to maintain a happy and positive environment for both the kids, but especially Nina. I had failed!! Linda helped me gather myself in a flash, I rinsed my face, and went downstairs to join the play. As I descended the staircase, Nina watched me, assessing how I was doing. I instantly flashed her the biggest and most honest smile ever. It is always easy to smile when I look at her! She believed me and smiled right back! Thank God! We played Zingo for about 10 minutes before it was time to go to the oncologist.

When we announced the trip to the doctor, Nina began to protest. I feel so bad for her!!! How many of us have to be tortured like this??? We had to go to oncology to collect some lab work. Prior to the Avastin treatment on Monday, the doctors needed to make sure her blood count was good. I was going to wait to tell Nina that one until we were in the room :( We arrived, the nurses greeted us and explained to Nina what needed to happen. Of course, she started to cry. What is most scary to her is having the port accessed because she has to see the needle. Even if I cover her eyes up, she is anticipating the needle and freaks out. What is such a bummer is that it doesn't hurt. It the simple anticipation that freaks her out and it is practically impossible to try to logically explain anything to a 5 year old in this situation. She is scared; it's a simple as that! Once the needle is in, she stops crying instantly and that is what she did again today. Pam, our nurse, tried to draw blood but nothing was coming out!!! AGHHHH!!!!! What a fucking nightmare of a day!

I prayed and prayed and prayed for blood to come out but nothing happened. After a few minutes, Pam suggested we lay down on the bed to see if moving her position would help. This sent Nina into a total panic. She doesn't like being lifted up and she hates having to lie down in any awkward position. Unfortunately, there was no choice. I picked her up (Linda yelled at me for lifting her up by myself.....PUH!!! I'm supermom, weight matters not!) and laid down next to her on the bed. The poor baby cried and cried but the crying seemed to help the blood flow a bit better. It was a tedious draw, but Pam was able to collect enough for lab work. We scooped her back into the stroller and scrammed out of that office. Before we were even out the hallway, Nina had stopped crying. She was relieved it was over. The rest of us were too!

We returned home and collapsed on the couch. Nina requested Sponge Bob and after what she had been through she was gonna get whatever she wanted. We turned one S.B. and said goodbye to Linda. I walked my friend to the car and promised her I'd take care of myself. She hugged me and told me she'd be watching :)

Once back inside, I asked Nina if she wanted to make brownies with Mendy and me and she jumped for joy! I was so happy to see her animated. We gathered the ingredients and had a blast with Auntie Mendy! Nina was especially proud to show Mendy her egg-cracking abilities. I must confess that they are pretty impressive :) With the brownies in the oven and Nina and Mendy cleaning up, I rushed to pick up Teddy from his play-date. He happily climbed into the car and told me all about the legos he had built. We all need good friends and Teddy is blessed (like me!) to have many wonderful friends in his life. These friendships will be critical for Teddy and they will help him be resilient. God knows he will need all the love and support a little boy can get!

By this juncture, my day had been intense, to say the least! I needed a reprieve and I got it in the form of Teddy being chill with homework. He and I worked on it with little complications. However, he did on several occasions check in with me about whether or not I was still planning on getting him a tutor. The previous night I had decided that we needed to get him a tutor. I had asked Todd to look into finding one. I thought Teddy would do best with a male tutor, someone he could look up to. Bottom line, he had enough women in his life "pestering" him (at least that is how he interprets it!). Plus he is at the age where male role-models become increasingly important. When Teddy heard my plan he flipped!!! He promised that he would shape up and complete his homework without complications. I tried to explain that the need for tutors wasn't simply about homework but helping with foundational skills he hadn't built fluency with. As would be expected, all he did was complain. Therefore, I pulled the mom card and stated that the tutoring was going to happen and he could either go with the flow or make things hard on himself. Obviously, as indicated by his frequent questions about the salience of tutoring, he was still under the impression that it was up for discussion! Sweet, stubborn I love him!

After bedtime and stories, I went to work on finishing updates on my resume. In the midst of all of this chaos, a wonderful professional opportunity had arisen for me and I had decided to take it. By tomorrow afternoon I had to turn in my letter of intent and my updated resume for a new Coordinator position for the Exceptional Students Credential Program at UCSB. I was beyond thrilled that Mendy was here when I had to do this because she has a sharp eye (and even sharper tongue :) hee-hee) and would give me honest and unbelievable perfect advice in how to prepare for the subsequent interview. I knew this was a golden opportunity and I was determined to do everything I could to make a good impression. The night was long, but worth all the hard work!

As it turns out, I learned today that when life gives you a mixed-bag you better work your ass off to shake things up in your favor! If you don't, no one else will!!

1 comment:

  1. Rosy I am so thrilled about the new job opportunity! You will be fabulous...I can not imagine a better person.