First off, HAPPY NEW YEAR!!! I can't believe it is already 2015. Time is just flying by and we are not letting any grass grow under our feet. Before I got sick again we had planned a trip to Park City for a week of skiing, snowboarding, sledding and lots of snow. During my last trip to Park City, in October of 2013, I was in the middle of my first chemo treatments and had such an awful reaction we decided to cancel this year and find a new location to celebrate the new year. When we were there I had such a bad reaction to the altitude it was scary. I felt so sick and out of breath and could barely walk more than a few steps. Even when we went into Salt Lake it wasn't much better given the fact that it is 2700 feet lower in elevation than Park City. We thought about taking the kids to the Grand Canyon but the elevation surprisingly was not much better at 6800 feet. So we decided the beach would be the best place. Even though it is freezing (by California measure) we are making the most of it and enjoying the sunshine.
We had our consultation appointment with the City of Hope earlier this week and got some very encouraging news. Really we would have liked to have walked in, met the doctor and have her hand us a pill, say take this twice a day for a week and everything will be fine, but that didn't really happen. We did meet with a great doctor who was very knowledgeable and encouraging. She told us that there a few clinical trials available as well as a new medication that is being used in a different way that could help me as well. The best thing about the appointment was she confirmed that my current treatment is exactly what she would have done as well. She will now work with my oncologist to set the plan going forward after my current treatment plan runs it course which is at least one more round after this one I am on.
My current chemo seems to be making a difference. Last month I was having so much pain in my left hip and was told it was because of the tumor there. The good news is that since I have been taking this oral chemo, the pain in my hip is almost completely gone. It is so nice to know that all of the side effects and 8+ pills a day are making a difference. My first round of chemo was only 6 pills a day and then they increased it to 8. I don't think it will increase again. I still have the same side effects of nausea, having no appetite and sleeplessness but if it's killing the bad stuff then fine by me! Let's go!!!
Chemo is a funny thing, it really is a trial and error process. The doctors work to find out what chemo has proven in the past to fight the type of cancer you have and then test it out, hoping it will work on you. You then stay on that chemo until it stops working and then the doctors look to see what other chemo's out there that are effective and you start on those until they stop working and so on and so on.... This clinical trail being suggested would use two already proven chemo medications but not usually used to treat breast cancer. One would be the traditional IV based medicine taken on consecutive Monday's. I would get two weeks off and then resume the back to back Monday regimen. I would also be taking an oral chemo at the same time with the hope that the doctors could determine the max dosage I could tolerate while maximizing the effectiveness of the combined medicines. Once I get through my current treatment plan this clinical trail could most likely become my next step.
My pain is still very much a part of my everyday life. The majority of the time it's in my back and my abdomen where I feel like my entire mid-section is being squeezed so tight which makes breathing a little difficult. I am meeting with my pain management team next week and they have been great in helping figure out the best combination of medicine. I want to be as comfortable as I can be and able to spend as much time with my family, doing what we want to do. Today was one of my best days in a very long time. I was able to walk the beach, roam through the tide pools and make dinner with my family. It was a very good day.
One thing we have begun doing as a family is the family cooking night. As some of you may know I love to cook, I mean I really LOVE to cook and I want to be able to make all of my families favorite meals and have them actually do all the work so they know how to do it and I can write up a cookbook for them including pictures. A good friend of mine has offered to laminate it for me to so it will be something they can actually use in the kitchen. We have devoted every Sunday to cooking lesson night including a trip to the grocery store. We have put together a list of all their favorite things I make so we are sure not to forget anything and we add to the list all the time. The first night was a family favorite, Steak in the Bag. This is a yummy London Broil roasted in the oven with a type of crust and is our youngest sons favorite. For a first time try, I think it was a huge success and quite possibly the best Steak in the Bag I have ever had. We are working on what the next lesson will be and I will keep you posted on how it goes.
I hope you all have a very Happy New Year and 2015 brings you every happiness and blessing. Remember to cherish everyday and hold tight to the ones you love. Thank you for all of the great Christmas cards, notes and messages, I hope you know how much they mean to me. HAPPY NEW YEAR!!!!
The past week has been a good one. One filled with lots of time with family but also lots of time to just be, and think. I definitely have good days and bad days, and I try not to get sad. The biggest issue I have had lately is I get sad when I am out doing things with my family and especially my kids. I let the fear creep in and rob me of the joy I should be feeling in the moment. Fear of not being there with them or for them. Not being able to cheer them on or be the first one to give them a big hug when the day doesn't go the way they wanted it to. I find myself fighting back tears like I am on some sort of farewell tour. My only hope is that I can be like KISS and have an endless career and go on 5 farewell tours or more. I need to get back to my place of positivity and focus on the good, like my pain not being as bad and the meds doing what they should be doing. I also need to remember that it all takes time, time to let the meds to their job, and time for me to rest and recover after treatment. I can either spend my time being sad and feeling sorry for myself or I can spend it being happy and enjoying every minute of every day with the people I love, the energy exerted is the same it's just how I choose to spend it.
For the New Year we did some really fun activities down at the beach and were able to go whale watching. It was a GORGEOUS day on the water and we were able to see a mama whale with her 3 week old calf as well as a very pregnant whale on her way south to give birth in warmer waters. The kids were even able to lay on their stomachs on the net in the middle of the catamaran and actually pet the dolphins as they swam with us under the boat. It was so nice just to sit on the back of the boat with the warm sun on my face and watch my family as they had so much fun on the look out for whales and dolphins. We actually saw a few hundred dolphins throughout the trip.
I met with my pain management doctors last week and they have changed them yet again. One of the side effects of the chemo I am on is that the soles of my feet and the palms of my hands can get very red, almost purple and it sometimes hurts to walk even a few steps. So, they have added a new pain med for me to take at night to help, and it seems to working. I am still taking pain meds in addition to the pain patch I have. They really would like me to take less of the pain pills for "break through" pain throughout the day. They have increased the amount of meds in my patch and that has seemed to help and I am taking less pain medicine throughout the day which is good... I guess, even though it is more like a wash in my mind.
