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!!!

"A Good Day"

     My mom has been at my house everyday since my brain surgery just to be with me and to help me do whatever I need to get done.  We have been cleaning out a lot of cabinets and drawers and getting rid of a ton of stuff as well.  I came across an old notebook that I believe belonged to Davis. It has to be at least 5 years old, so he would have been around 8.  Inside I found an essay about the Packers and a poem he had written titled....
         
                           "A Good Day"

         This is not a day that will be bad, or make you sad.
         This day will be good.  Is that understood!?
         Yes, this day will be nice, made of sugar and spice.
         Yes, that is a good guess, this day will be the best.
         The day is what you make of it.
         So make today a good day."


     So I guess he must be my kid, and I'm so glad he makes the choice everyday to be happy.  I continue do the same and choose to be happy.  I have had a good week and have been working with the doctors to get a handle on my pain medicine and manage my pain.  The majority of my pain is still in my back and my left hip. It's funny how different pain meds effect the different areas of pain.  I have pain patches that deliver meds continually (although I don't really know that their working) and then I have 2 other meds for "break through pain".  In my mind I am just having too much break through pain and I need to figure out how to manage it better.  I do feel better when I move so I'm trying to stay active as much as possible and am still wearing a path in the floor around my house.

     We were able to make our annual shopping trip for Christmas and it was a pretty successful night.  I think I am about 80% done with my shopping and thanks to my mom who has been wrapping as we go so we are doing pretty well.  I was even able to get some new jammies as well.  I would stay in jammies all day everyday if I thought I could get away with it although I may embarrass my kids a bit at the grocery store or the mall.  We had such a fun night snacking on food and yummy hot chocolate while we listened to a great live band and shopped the night away.

The kids are all doing well and we have had many discussions that I think have gone very well.  I continue to have good days and bad days but Peter and I have each other to lean on and do so as much as needed.  I was able to go to Davis' football banquet the other night and celebrate his first football season with family and friends.  It was a long night but a very fun night capped off by Davis getting the Offensive Player of the Year award as well as the Presidential Academic award for having a 4.0.  I really feel like this whole process is a blessing for my family.  How lucky I am to have the opportunity to spend time with everyone I love and who mean the most to me and be aware of how meaningful this time is.  Usually when we lose someone we love we wish we were able to tell them one more time how much they meant to us or how much we loved them and in this situation I get that chance to say exactly what I want them all to know over and over again and they get to hear it from me.  What a blessing that is to have that knowledge and awareness in the moment!  While I am still fighting with everything I have, as hard as I can I am also not wasting one minute of any day!

I am still making my list and crossing things off as I go.  Although most days I feel like I am crossing off 5 things only to add 10 more to the list. But I am making progress.  I have at least consolidated the 5 lists I had all into one master list of things I need to get done.  It is sometimes funny to read the list because it truly is all over the map. Ranging from letters I need to write to each of my kids for milestones they will reach in their lives to the fact that I have to make a nail appointment next week.  As I have always said, straight from Miranda Lambert herself "it doesn't matter how you feel, it only matters what you look like."

I had my radiation treatment today and as expected I was very nervous and I had one of my shiver spells right before I went in, much like I did when they did the mask fitting yesterday. I finally realized that the shivers are partially because I am cold and they happen at home almost everyday but I think the ones that happen at the hospital are more anxiety than from actually being cold. I shake uncontrollably and it can be kind of embarrassing.  It also made it hard when they put the mask on as well because it is such a tight fit.  I had both my neurosurgeon and radiologist at my treatment which was very reassuring for me.  They were both very happy in how the treatment went and I have another follow up in early February and then another MRI in late March.  So we can check that one off my list and move full force ahead on the next thing.

We got some great news today, the request for my out of network request to go to City of Hope was approved and I have an appointment early next week.  I have collected all of the information, scans, notes and details to take with me and with some help, luck, great friends and endless work by my amazing husband we got the approval today.  I could not be happier, I know there are no guarantees but this is just one more resource and one more way to fight this battle because I am not giving up!
       

Cherish everyday!

     So sorry it has been so long since my last post but I wanted to wait until I had the most information to share with you.  I went in for my appointment with my oncologist on Monday and we were given the worst news anyone could ever imagine.  I now not only have masses in my hip/femur, my lungs and my lymph nodes I have one on my spine as well which would explain my back pain.  The one on my back is not on the spinal cord but outside the spine on the vertebra.  Even though it is still considered breast cancer that has metastasized in multiple organs if I were to present today with what I have now it would be considered stage 4 terminal cancer.  As you know I am a very upbeat person and I really I am not worried about me at all.  I am not afraid or scared, all I am is worried about are our 3 kids.


     I am not done fighting and I am hopeful that I can prolong my time as much as possible and already have made contact at City of Hope as well as UCLA to start the process of getting in to any clinical trials for triple negative breast cancer.  I will fight with everything I have until the last second!  I started chemo on Monday but this type of chemo is in pill form which is kind of nice because I don't have to spend 8 hours at the hospital. I just need to take 3 pills twice a day for 6 weeks and then I will start another "cocktail" which most likely will be traditional chemo where I have to go in for an IV each week.  I may also have radiation treatment on my back and that could happen within the next 6 weeks depending on how I respond to this chemo treatment.

     In addition to the treatment plans for chemo and the radiation plans I am working with a pain management team.  This team helps me get the right mix of meds to fight the pain I am having which is always there and can get really bad at times.  The majority of my pain is in my back and my left hip, which would make sense because I have a mass in both of those areas.  I met with the pain team today and I think we have a good plan to begin with.  It is really a trial and error type approach and we will keep tweaking the combination of meds until we find what is going to work best for me.  As much as I hate taking pain meds I know they serve a purpose and if they are going to help me manage my pain so I can spend more time with my family and be as active as possible I am all for it.



     I got my staples taken out the Tuesday before Thanksgiving and it didn't hurt that bad.  Only a few really hurt, mostly it was the sound of the ones they took out by my ear.  The sound it made inside my head was just creepy.  The surgeon was happy with the way it looks and how it was healing and gave the go ahead for the radiation treatment next week.  My hair is starting to grow back and it looks like the scar will totally be hidden.  I think I am going to embrace the short hair and actually go and get a hair cut with a style as apposed to growing it out because I am probably going to lose it again with my chemo treatments.

     For now I am focusing on every minute of every day and being in the moment.  I have my Gamma Knife radiation treatment next Wednesday and I am looking forward to that being behind me.  I don't know why I have so much stress about it, I just do.  I have been decorating the house with my mom for Christmas and getting my Christmas shopping done.  I am looking forward to my annual trip to the Nordstrom customer appreciation night this weekend to get some more Christmas shopping done with some of my favorite people.  I had an amazing Thanksgiving with the biggest group we have ever had.... 47.  It was absolutely perfect!  Our kids had every cousin (except one) there and they all had so much fun.  We had 3 turkeys and a whole ham and  about 15 side dishes and it was all delicious.




     We also had our annual Ivy lunch and gift exchange.  We are on year 11 and this is when me, my mom, my Auntie Kathy, my cousin Erin and Kristy get together for a yummy lunch and we exchange gifts.  This year Lisa, Lauren, and Kristy's mom Jane were able to join us and we all had so much fun.  I love this tradition and look forward to it every year.  Not only do I always come home with an amazing gift but the food is so good and its fun to see if we can pick out and celebrities as well.  Most of all it is just great to be with family and laugh, gossip, get caught up and be together.



     The day after Thanksgiving we all went to the UCLA v. Stanford football game.  We had quite a crew at 15 and we had a great tailgate before the game.  Even though the wrong team won the game (not if you are our oldest son) it still was a great day and everyone had a great time.  Only in California can you have shorts and tank top weather the day after Thanksgiving.  The kids played with their cousins while all of the "adults" just sat and visited before the game.

This is still and forever will be the house of NO DOOM and GLOOM.  I have been an upbeat, positive person my entire life and this does not change anything.  like I said I am doing anything and everything to fight this to help prolong my time.  If you want to come visit please do just call/text Peter to make sure I don't have an appointment when you want to come or that I already have people over, you know how everyone loves me so much LOL!!!!!  The only rule I have is no tears, I understand that it is a difficult time but tears are something I am choosing not to spend time on and it is defiantly something my kids don't need to see.  I love you all and hope to see your smiling faces soon.