Hello my family and friends. Nothing monumental is going on, but I wanted to post an update, and be more dedicated to writing what is going on with myself and family in regards to cancer, in hopes it will help others too. Now I know that sounds cliche, but I am always skulking around looking for other stage 4ers, seeing what they are doing and how they are handling things, and it always makes me feel less crazy.
Well the basics are I will be going to only my 5th chemo treatment on Friday the 23rd. I am still getting erbitux every 2 weeks but the chemo and erbie are once a month. That's why things seem to be dragging on. Dr. Moriarty and I discussed that I will probably have a scan the first week of August and that will let us know if what we have been doing since April is working. I REALLY hope it is. Irregardless I will be continuing on chemo after the scans that I know. There is the possibilty it will be changed to something called Xeloda, due to the fact that I am not tolerating the current chemo that well, and my CEA levels keep creeping up. At last check they were at 58. In April they were around 30, so me no likey.
The side effects from chemo haven't changed. It takes me a good solid 10 days to recover and this isn't a "boo hoo, poor me" it just is what it is. If I see the treatment working I will drink cpt11 and erbitux for breakfast lunch and dinner. I'll admit it I am desperate to win this. I am desperate to live. The conundrum is there are thousands of cancer patients who think the same way as me, fight harder than me, and are more determined than me and they don't make it. So that screws with my head a whole lot. A lot of people with very great attitudes and strong wills to live end up dying. The cyclical conversation in my head, is, will that be me. Then I say "don't think that way, that is a negative path." But then I say "well I have to be realistic" then I say "yea but you have to kick this cancer's ass!" And the conversation just goes on and on and on and gets me......guess where.....NO WHERE!! Ha Ha
So I am trying to do this "live in the present" type deal. It definitely helps me take me out of myself and my own head. And my kids help do that too. I heard someone say once that children are the antidote to toxic self absorption! I love that, it is so true.
Now despite how sick I get after chemo, after the 10 days I am really feeling fine. I am full of Erbitux pustules and that's fine too. I start exercising and really feeling good. I take this as a good sign that my body is working well, and all my pipes and whistles and bells are working as they should when not being mixed with chemo and such.
I have also had a bit of a bright spot in the area of the Erbitux humiliating, pustulant rash. I finally decided to follow dr's orders and take the stupid antibiotics. I have been doing that for 3 weeks now and see a big difference. I hope it lasts, because ya know it would just be nice.
The kids are doing well. Francis and I decided to have Sydney talk to a pediatric therapist who specializes in anxiety disorders and cancer (talk about needle in a haystack) but actually Kathy at Overlook hooked me up with her and it has been going very well. We have seen great strides in Sydney in terms of dealing with anxiety and her mommy being sick. Sydney is an anxious child to begin with, and we have seen so many of the manifestations of her anxiety disappear and she is able to more constructively cope with what must be a very scary thing to deal with for a 6 year old.
Now Ethan, not to be excluded is 4 and a lot of this goes over his head. I know he is affected when we are in the moment of me being in bed for days, and we just try to love him up as much as we can and keep the doors of communication open for him. Our therapist Laura said he is really too young to be seen. And we agree. His struggles Fran and I are able to handle with some extra tlc, but Syd's were becoming a bit more than we knew what to do with. So we are very grateful. It is a great gift.
As a side note we have been having a great summer so far. We spent the whole first week of July camping, and when we came back the kids and I unpacked and repacked and flew to Texas to be with Cynthia and Brad and Mike and we had an awesome time on all counts. The summer has been going great and I am very grateful for that.
Ya know our minds are very powerful. They can push athletes to push their bodies to do amazing things. People run marathons in the desert for heavens sake. They can also push you to be negative, convince yourself of doing nothing with your life. It is a powerful tool.
I am very convinced and believe in my faith and in the strength of the mind pushing you where you want to go. I am going to push myself as hard as any athlete, any Olympian, because I need to live, and I need to raise my children with my husband until we are old. And no one is going to tell me no you're not, and no you can't do that. No one is going to tell me no.
Much Love,
Karen
