little bit of a mixed bag

I try not to think too much about anything.  As you can imagine my mind can tend to wander.  My appointment at the City of Hope has moved around a bit but we have been approved and confirmed for the 29th in the afternoon to meet with new patient intake and then with the head of oncology.  I am really looking forward to meeting with them to better understand what we can/should be doing as well as finding out about what clinical trials are available.  I am finding out that clinical trials are going to be difficult for me because the cancer has metastasized in my brain.  So many of them are for the newly diagnosed or patients in early stages.  We found out yesterday that there are some new spots on my liver that they want to keep an eye on as well.  We may do some additional radiation on my back and hip since that is where most of my pain seems to be.  Now that I have done radiation I feel a little more comfortable with the process.

I am just starting my second round of chemo today.  It is 4 pills twice a day for 2 weeks, then off for a week.  I am now able to take the pill form of chemo where I was not able to in the past.  Since it has now spread I have more options for the type of meds I can take.  The side effects on this one are pretty difficult, mostly nausea but there is a list of others that all add up to being tough to deal with.  I have no appetite at all so I have been juicing a ton trying to keep my nutrients up.  I also have to go in once a month for a bone infusion to help build up my bone marrow.  The side effect from my first infusion was a high fever. The doctors want me at the ER with any temperature above 100.4 and I hit 104 with my last treatment. I refused to go and the temperature broke after about an hour.  On the opposite end of the spectrum I still get the shiver spells where I am so cold I don't feel like I will ever get warm.  I shake so much that my teeth chatter so loud I can't even talk.  They can last between 15-45 minutes and the only thing that helps is more blankets and drinking hot tea or hot water.

As you can imagine Peter and I have a lot to talk about and discuss.  Most of them things you never thought you would have to talk about, especially not at the age of 42.  I know this is all very hard on him and I want to be as understanding as I can to what he is going through.  The issue I have, as most of you know, is that I am a total control freak which we decided this weekend is not a disease, I claim it's more of a syndrome.  I want to control every aspect of this entire process and that can make for some very uncomfortable conversations.  We spent the weekend in Santa Barbara at Bacara which is the most beautiful resort.  We figured if we had to go and have a lot of crappy conversations we might as well do it in a setting that was easy on the eyes with an ocean view and a fireplace.  As much as we were not looking forward to the weekend and all that we needed to discuss I think we are glad we did it.  We were able to take our time and make decisions so that things are done on our terms.  Like I have said, being in this situation it allows me to say and do everything I want to and let people know exactly what they mean to me. Being a control freak I get to plan exactly how things should be done and by who.

Christmas is coming very soon and I can't wait for it to be here.  I want to sit on the couch and soak it all in.  I want to watch each of my kids open every present and memorize the joy on their faces, record the laughter and the excitement in their voices.  I want to lock it away in my mind.  I usually host Christmas Eve and will do the same this year but I really am not doing much.  I am doing my best to let go of the control and enjoy the support I am getting from my amazing family.  I did get the chance to make the sugar cookies with my kids and mom tonight.  It is a tradition we have had for the past 13 years.  We make about 4 dozen cookies and we get every type of candy decoration you can think of along with 6 different colors of frosting.  All of the cousins, this year there will be 9, get together and do what kids do.  We don't have any rules only that everyone has to decorate at least one cookie even the adults.  The kids all go home with a good assortment for Santa.

Christmas always brings great traditions and one of them is getting together with friends.  Peter and I were able to get together with the "original 6" and enjoy a great meal but more importantly great conversation with some great friends.  Friends we have known most of our lives and friends we have shared so many memories with from elementary school, high school to college,  weddings and kids.  It was so nice to sit and talk about all the great times we have shared together and enjoy each others company.  I was also able to get together with the girls for a great lunch and ornament exchange.  We could have stayed there all day but kept it to only a little less than 4 hours.  I know everyone thinks that their friends are the best but I have to say my group truly is the best and I am amazed everyday by their support, strength, selflessness and overall love for each other, especially me.

I wish all of you Happy Holidays and hope you are surrounded by family and friends to celebrate the season.  Love to each and everyone of you and here is to a very happy New Year!!!