Friday, January 29, 2010

Doing Great!

Hello everyone. Thank you for all the prayers and support over the last few weeks.

I have to say this was the easiest thing I have been through, procedure/treatment wise in almost 3 years. I recovered quickly and well (something that NEVER seems to happen in my circumstances). Before even the first week was out I was in no pain, and wasn't even sore. I don't even think this procedure is going to leave a scar. Though it really can't compete with the big momma-jomma scar I already have. That will always be my best one heh?

So I am going to go for a CT scan next wed, which will start documentation of the baseline of what my liver and the tumor looks like post ablation, with subsequent scans to follow and mark the progression of healing(of liver) and death(of tumor). We are still moving toward the cyberknife treatment but as Dr. Moriarty said to me the other day "lets just see where the dust settles." But my impression is that the cyberknife will also be done but maybe in a month or two.

Here is the link to cyberknife info (because I am horrible at explaining it).

And now for just some icing on the cake. My CEA before the procedure was at 52 with us expecting it to rise after the procedure, because that's generally what happens when you go in there "sturrin up some stuff." But today I was told that it is at 29! I was happily shocked and it felt great to hear good news like that again. It was a small sweet victory and I was savoring it all day.

Thanks again for all of you support. The best notes of love and support and funny jokes always come at a perfect time. I hope you all know I am praying for you all who pray for me and my family and love us and support us. We are so grateful for all your help.

With Much Love,

Thursday, January 14, 2010

Cryo-ablation Post-Op

Karen's doing well. Her procedure is done, it took all of 3 hours and it went fine. I was able to see her briefly. She was comfortable, very cold but in good spirits. She's in recovery now and will be transfered to a room soon.

I spoke to Dr. Kamienecke who did the procedure. He said it went fine, no surprises. They used two probes and got a good freeze on as much as possible. The tumor is close to her lung and some other warm blood vessels so they can't be sure the required freezing temperature was reached on those bits.

She'll stay at least tonight in St. Barnabas and hopefully be discharged tomorrow.

A PET scan will be scheduled for 3 months from now and only then will we know if we got it "deaded".

For now we'll take this as a result.

Wednesday, January 13, 2010

We're Ready to Freeze!

Well we finally have our tumor killing procedure planned for tomorrow morning at St. Barnabas Hospital in Livingston NJ. Instead of doing the RFA procedure in which the tumor is burned the are going to do something called cryoablation (click on this to get some more info). This is essentially the same thing except the tumor is frozen instead of burned.

The doctors (interventional radiologists) came to this decision because this causes less damage to the surrounding tissues, and since this is close to my lung and a major blood vessel this approach makes sense, and all my other doctors are in agreement. The procedure will mean an overnight stay (let's pray it's just one night) to check for internal bleeding, and infection.

There is a chance however that because this tumor is in such a precarious position that it might not be reachable without harming me and they may not be able to perform the procedure at all. Essentially the risk would outweigh the benefit. I am just putting in this caveat because I know we are all hopeful that with a whiz and a flash this will "get gone" but it may not happen in the way we are expecting and wanting.

I am naturally very apprehensive and just plain old fashioned scared, but I am grateful for this option to be able to have this tumor treated locally without resorting to chemo just yet.

I also wanted to add what we have told and discussed with Sydney and Ethan. We just talked to them about it last night and the discussion is of course always open and ongoing. However we told them that mommy is going to the hospital to work on my tummy again. There are germs in there, and I have to go the hospital to get thee medicine I need to fix it. I have to sleep over there for a few nights. Ethan thinks it's great that he "doesn't have to see my stinky robe in the morning" and thinks it will be cool to come see me in the hospital.
Sydney burst into tears. We are still talking to them both of them about it but of course she bounced out of bed this morning happy as a lark and off to school she went. There is no doubt there are nervous and scared but we are continuing to talk about it with them.

I want to reiterate that Fran and I have reassessed, thought about and discussed whether we should tell the kids I have cancer. And after much thought, discussion and reassessing are sticking with our decision not to. We are being honest with them in terms they understand. We feel like saying to them I have cancer is just putting a label on it and is too much of an abstract concept for them to understand. In my opinion its a label that will just terrify (especially Sydney) them and will accomplish nothing. If I had lupus I wouldn't tell them that either because it's not something they can understand, but they understand what sick means, and germs mean and that hospitals and doctors are places that help you get better.

I hope that everyone will continue to support us in this and will also talk to the kids about it in this manner if they ask questions, or want to talk about "mommy's tummy" etc.

I know I say this all the time, but it is so important to say. You all have been so crazy supportive!!!!!!!!! My family, my friends, people I do not know - I cannot tell you how it keeps me afloat. It keeps me from sinking. I can't tell how many times I am so down or crying and my blackberry beeps and its a note, or message from someone and it lifts my mood completely, and yes I admit it, I usually hug or kiss my blackberry expressing my gratitude!

I really don't like violence but I am ready to kill, kill, kill this tumor dead. Smush it, smash it, freeze it, destroy it. I want to say in the words of my amazing daughter (after she has bravely killed a bug) "I deaded it"! So here is to deading.

I love you all so much. Thank you for loving me and sticking with me.

Fran you have been incredible. You have been strong, and I have been able to lean on you. Thank you babe.

Much Love,

Saturday, January 2, 2010

Slowly Moving Along

I have been holding back on updating, because I am trying to get concrete info and dates and things have been progressing slowly, but they are progressing.

We met with the interventional radiologist dr. on the 31st of December to discuss doing the RFA procedure. He is concerned that my lung might be in the way of doing this procedure in relation to where the tumor is located.

At any rate the bottom line is he will be talking to my surgeon Dr. Chamberlain and some other specialists and I am told I will be hearing from them on Monday the 4th with the result of their discussion. So we are still in a holding pattern but as my friend/nurse Kathy told me, it is a good thing that this is taking time, in that many doctors/specialists are looking at this case and taking every care and precaution to do the very best thing for the best result which is 100% tumor death.
And as always she is right.

Thank you everyone for the emails, and messages and encouragement and prayers. I have been a mental and spiritual wreck over this and every comment, and note of encouragement and love I have been receiving helps me in unmeasurable ways. So I do thank you from the bottom of my heart.

When we have more concrete dates and such myself or Fran will definitely be posting.

I hope everyone had a great Christmas and New Year, I know my family did.

Much Love,