One nice thing about posting every day or so is I don't have to remember what I've done since posting last. A lot has gone on in the past two weeks and so it is becoming increasingly hard to update in one nice tidy post. I've been thinking about this blog and why it was started... to chronicle our journey through cancer. I'm not sure exactly what direction I want to take this journal in right now but I do know it will have to shift.
A little over a week ago I went back to Houston to see Rachael's oncologist and we had a very interesting conversation. Those of you who know me know that I am not a worrier. I'm not sure if he expects me to worry but he certainly gives me enough information to give me something to worry about. He said that one thing research has not been able to determine, because the pool is so small, is if children who get melanoma are more likely to develop other forms of cancer. If they are predisposed, if you will. Because she will need to have at the very least lung scans every year or so, radiation exposure is a consideration. Will this increase her risk? We don't know. He said that the possibility of her having a re-occurrence of her original melanoma - the most likely place of re-occurrence would be lung mets (or metastases) is very low but the odds of her body making another melanoma is another matter. He didn't say it would happen but what he did say is, "Her body learned how to make a melanoma at five years old without the help of the sun. Even with the best protection she will be exposed to the sun so the likelihood of her developing another one sometime within the next 100 years is pretty high." But he went on to say that as a "cancer survivor" she will learn exactly what she needs to look for and with regular check-ups even if/when she does develop another melanoma it should be caught early and the good news is early detection makes the odds of survival excellent.
Now, I suppose that is a lot to worry about but what I latched onto was his words "cancer survivor". Isn't that just the coolest phrase! My little Rachael is a cancer survivor! So let me take this moment to thank you all for your prayers and support and let's just rejoice in that.
We have 43 more shots of interferon to go. 43 more weeks of treatment and then her active treatment phase will be over and we will be on maintenance. Hopefully for the rest of her life she will remain NED - No Evidence of Disease.
I don't think that means our "journey through pediatric melanoma" is over necessarily. I mean, we will still continue to travel to Houston monthly for this first year and then every three months for a couple more years and then every six months up until the five year point and then every year after that for the rest of her life. So this has and will continue to play a role in our lives. Rachael endured a lot in a short time and still has a bit more to go but it far from defines our lives at this point.
As a quick side note, she counted her beads on her Beads Of Courage necklaces (she has two now) and she has 103 beads!
So that brings me to this blog and the purpose it has served. I like blogging and want to continue but I think it's time to branch out. I'd hate to think of myself as a strict "mommy blogger". I certainly am not into chronicling what I made for dinner.
I think about the title of this blog. "I Love You More". It came from a game I play with the kids where we try to outlove each other. "I love you more." "No, I love YOU more!" "Well, I love you more than infinity!" "I love you as much as you love me plus one!" It goes on and on.
The obvious truth is, I DO love them but damn if it's not hard sometimes! It is so stinking hard to be a parent. Can I get a witness? There are days when I really don't think I'm up for it. There are days when I wish they would just go away. I'm just being honest here. I know not everyone feels the way I do. There are those women who live for their children. Who mourn them going to school. Who love to do activities with them and come up with creative messy ways to enjoy them. They really enjoy play and will turn down offers for babysitters or even just time away with a girlfriend for lunch because they would miss their kids. They focus on "soaking up each moment" because the time goes fast.
I'm not that mother.
I do play with my kids and bake with them and make messes with them. I read to them and plan fun activities for them. But I do those things because I love them and I want to do the right thing. Not because I take immense pleasure in it all.
Many people have told me that my blog is "real". I guess that is what I intend to continue. You are going to hear about how incredibly difficult it is to parent an eight-year old male whom I Do. Not. Get. You are going to hear about how our precious Rachael is LAZY. Yes. You heard me. Lazy. "But she has been through a lot!" Yeah. She has. SO YOU THINK SHE COULD HANDLE PICKING UP HER SHOES WITHOUT A MELTDOWN!
You might hear about my husband's ongoing battle with narcolepsy. Not really. We just like to kid him. Problem is we (and by we I mean me and my friends) are not sure he thinks it's funny. I suppose we'll find out when he reads this. (Hi Honey!)
You will hear about how I need to lose weight and exercise and how I really REALLY don't want to do anything I need to do to achieve those goals. Hmmm... wonder if Rach got her laziness from me?
So, I'm going to change the banner and the picture on the blog soon and hopefully it will continue to be interesting. It's life. It's messy. It's hard.
But I love my little family more.
17 hours ago