Journal Entry 2/18/10

So, here I am, 29 years old with Stage IV Metastatic Melanoma. Ain’t that a bitch. I’ve now had six major surgeries. Two rounds, 7 per week each, of radiation and one failed chemotherapy. And let’s not forget the double blinded trial, of ipilimumab, where I ended up getting the placebo. Holy crap what a list, this is. It just keeps growing. I wish I could say that it was six countries that I’ve been to instead of six surgeries. Will I ever see the world, again, in my life? Will I ever be healthy enough? Are my girls going to remember me? Why me? Someone help me? Why am I here covered with cancer at age 29! WTF is that about, how does this happen to me? I really can’t believe, the saying, “that everything happens for a reason.” What the hell is the reason for this? Am I dying of cancer? Is it painful? Or are you so drugged that you don’t even know who you are? What am I doing here???? I need some answers!

Currently: I’ve completed my third dose, 3 out of 15, of my chemo cycle. I was way too stressed out, with these new tumors popping up everywhere. It seems, that this chemotherapy wasn’t working. I called my doctor, as we sat in the waiting area, I was wrapped up in a blanket because I wasn’t feeling well. I finally, spoke up. Ben and I, kept saying, “ this therapy isn’t working, we have to do something else! “ I won’t do another cycle until there’s some other options, for me. There’s way to many tumors, taking over my body. Ben and I argued, with my oncologist, on the issue, for a good hour. He wasn’t there, you see, he was hearing all of this while we sat in the chemotherapy, waiting area. I proceeded, to tell him, that when I lay down at night I do my own skin check, searching for tumors! I carefully go over my skin, finding anywhere, from 2 to 6 per night. None of the tumors were growing, that I knew of, just more and more were showing up. I was extremely concerned for my health and we knew that this chemotherapy, Abraxzane, wasn’t for me. I seem to have fit in the statistic, where more than 25% of the people that take it, ends up not working for. I didn’t complete my fourth round of chemotherapy. We all agreed it was time to try something else. Just not sure if we knew what exactly that was.

We sat down and she went over, what is called target now testing or my Hail Mary!! We have run out of options! This is our best chance Katie. She tells me, she needs enough tumor to test and the largest ones are above my right and left breast. She said she would use an IV sedation, I would not be awake. I didn’t want to be anyways. The plan is to start it in a week from now, so that the current chemo can wash out of my system. It needs to be out, ASAP to test for any therapies will work for my melanoma.

After she told us, things in the room shifted, I looked at her and Ben was looking back at the doctor, while I looked at Ben and she said it- the words I’ll never forget…” we’re trying to turn your weeks into months! “ she said it and her voice quivered. I’ve known her for quite some time now. I felt safe with her and she has been on my case, almost from the very beginning. I’ve always consulted with her. I trust her with my life, she actually has my life in her hands. Ben looked at her and said, “ wait what are you saying? “ she told us that, “ we are trying to turn your weeks into months. “ The cancer is spreading rapidly. I don’t have much time! I asked her how long, she replied “ maybe 3 months. “ She asked me if there was anything I wanted to do, before I die? How do you answer that question???

The first thing that popped out of my mouth, was, “ I’ve always wanted to take my girls to Disneyland! “ she returned with, “ you need to go, I really think you should go and take them to Disneyland. “ I felt the urgency in her voice. Ben asked, how will she feel? Can she make it through Disneyland, all day? She told us, to get a wheel chair, when you arrive. I’ll write up a letter, for you to take to the DMV, for a handicap parking. This will help her get through the day, a little easier.

Ben and I, we’re both in complete shock. I couldn’t believe it had finally come down to this. This moment, you fear! These are the words, you fight like hell, to avoid. This feels like an out of body experience. I didn’t cry because well I just couldn’t. I stopped hearing anything, she kept talking but I felt like she was on the Charlie Brown show, where the parents speak and it’s just noise. Somehow Ben understood her, but me, the room was spinning. I felt my body getting hot and my hands, sweating. My girls…what will happen to them!? How can they go on without a mom? I’m sorry girls, I tried to hard to be here with you. I never wanted to leave you, I promise. I am not giving up on you, maybe something will change. Maybe she can still fix me! I wish she was optimistic about me being able to raise you both. I will always be your mommy and I will ALWAYS love you.

Ben you did such a good job, you fought so hard. You were always right there with me. Thank you for everything. For loving me unconditionally and supporting me, everyday. You are an angel. I LOVE YOU ALL SO MUCH! Your so perfect. You’re my everything! Take care of each other. Don’t ever leave one another, alone. I’m sorry!

We will make the most of these next few months, but for now, it looks like we’re going to Disneyland!