Wednesday, July 21, 2010

What's Been Going On

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

17 comments:

Francis Shanahan said...

You rock babe. Some day Sydney and Ethan will read this and know how strong you are and that they are very loved.
-fs

Melanie said...

Hi Karen, I just wanted to let you know that I pray for you and your family constantly. What a wonderful thing you have done for your daughter to find someone to help her cope with everything. Prayers and virtual hugs....xo Melanie

Teresa Loughnane said...

Thanks for the update Karen. Good to hear your resolve is as strong as ever. Have to say I'm also a firm believer in the power of positive thought. I see it all the time with my own patients. Glad to hear that Sydney is doing better and great to hear what a wonderful summer you're all having. Camping looked like fun, reminded me of the summers when Fran and I were kids down in Tipp. You are so right to 'live in the present'. Truth be told none of us know what's coming round the corner, so we should all take a leaf out of your book. Sending big hugs and kisses your way. Stay strong. Love you loads.
T xx

Christine Falk Dalessio said...

Continued love and prayers always, Karen. You are an amazing woman - just keep loving those beautiful kids and taking the best care you can! Glad to hear Syd will get what she needs too - that's awesome. Thinking of you!

Cynthia said...

Oh yeah! Sissy poo is the BEST!!!

Anonymous said...

You are an inspiration. You don't know me but I am following your story; I also have colon cancer (advanced) + your spirit really helps me. Good luck!

Anonymous said...

Wonderful to hear latest news Karen. It is so encouraging to hear the developments and how very brave you all are including Sydney and Ethan It was great you had a good time on camp vacation and again in Texax. Love and prayers Jo Nenagh

David said...

KK Wonder-Woman!!!

Catherine Murphy said...

Its great to hear that your spirits are still up. Your positive attitude to all this is just sooo amazing. Sydney and Ethan are indeed blessed that they have such great parents in both of you.
Delighted to hear that you are all enjoying the summer, and that Sydney is also feeling much more postive and happy. One day at a time Karen thats all any of us can do. praying and hoping that the scans are good at the start of August. You deserve it.
Lots of love and hugs to all of you ((((xxxxx))))) Catherine.

kmc said...

Hey, glad to "hear" your voice here...you are much in my thoughts.

Glad, too, you found someone for Sydney. We had a miserable time finding the right person for G. Certain combinations of needs make therapists run away, we found.

You are so mighty...you CAN do it, and we are all cheering all the way.

peace,
Kristin & the Cams Crew

Ian J. Lewis said...

You are always in our thoughts. Your resolve is phenomenal and your positive attitude is great to see and feel in your writing. If there is anything we can do please feel free to reach out to us.

Ian, Wesley and Elana Lewis

Clarissa said...

beautiful, Karen.

Clarissa said...

beautiful, karen

Anonymous said...

Dearest Karen,

There is not a day that goes by that I don't check up on you. Even when I was in the hospital I had to make sure that I know you are ok.

It is so good to know that you had a good summer, and I hope and pray to God that you get all better and have many, many summers with your beautiful family until you are a great grandmother.

I had my surgery, a modified radical mastectomy, but she only did the left side, she said that right now they are fighting to save my life, with the tumor being a 12.9cm, there was no time to waste on me healing . When anything can happen with such a big wound.

I wanted her to do a double mastectomy, but in the end she won and convinced me that to save my life it would be better to just deal with one thing at a time.

The pathology report was not so good, the cancer had spread even more than they expected, so right now she changed my chemo, so it is not that much fun as well as everyone knows that is dealing with any cancer knows it.

I guess that I will just live one day at a time, it is supposed to be mind over matter, and no matter what any doctor says, no matter how much we are scared, in the end it is all in the hands of God.

I have hope and faith, but with cancer you never know, I am scared, I am worried about my beautiful son, my parents, my heart just aches for my family, they have been through so much already with my beautiful little sister that we sure did not need this.

But who is to question God?

Whatever is meant to hapeen will, and we can fear the worst, but just hope and pray to God for the best.

Please just know that you are always in my thoughts and prayers and I wish you all the best in your life, and I hope that you get rid of this ugly cancer once and for all and just live your life.

I pray this for everyone that is dealing with cancer, because from both side of the shoes I know how horrible this is.

All my love and prayers to you and your family.

Mirjana

Anonymous said...

Hi Karen, Great to hear from you and to know your faith & courae as as strong as ever. Great too to hear Sydeny and Ethan are doing well with the support and your own and Francis' positive attitudes and help. Love and prayers. Brigid

Suzanne said...

Whew Karen- I feel energized just reading your blog- you are just amazing and such a fighter and I'm simply inspired. You looked great btw the other day- at Church- keep it up!!Keep fighting!!!!

Suzanne said...

Whew Karen, what an amazing fighter you are- I'm so inspired just reading your post- you make me want to live my life better.

Keep it up! Pray for you always-

Suzanne