The Final Post

This is a post I never wanted to write, but one that I have probably taken far to long to write. My role in Dana's blog prior to this was to proof read it and take my name out of it as often as she allowed. Today is August 2nd, 16 weeks since Dana passed away. At this time her blog has been clicked on over 47 thousand times, roughly 3 thousand times since her passing on April 12th. Most of those hits can be easily explained by Facebook and the people who followed her. But many of those hits didn't make sense to either of us. Dana knew nobody in Iceland, Indonesia, Turkey and a few other countries around the world. This final post is also written for those people who didn't follow Dana on Facebook but did follow her blog. Some of whom have asked me how she was doing because they didn't know what had happened since her last post.

Dana's last post was February 6th and she was moving to a new chemo medicine by the name of Gemzar. The first oral medicine, Xeloda, basically did nothing to slow the growth of cancer which was spreading through her bones quickly and moving beyond her lungs and into other organs. Xeloda was the medicine the City of Hope confirmed would have been the first drug they would have used to fight the cancer. As Dana had written before, with chemo drugs you get what works for the majority of patients and hope it works against the strand of cancer you are fighting. You play the percentages and hope it works.

The Gemzar was a quick infusion that took less than an hour to receive. It came with many of the side effects that Dana had dealt with before. The worst part was the Nuepogen shots she had to give herself 3 days a week to keep her white cell count up. The pain was constant and only continued to get worse throughout the month of February and into March. Dana's strength deteriorated quickly over a 4 week period of time and her pain increased to levels that oral medicine could no longer keep up with. She was given a pain pump of liquid Dilaudid which would give her a constant feed of medicine by IV to help control the pain. Dana despised the pain medicines, the side effects they caused, and refused to give herself an extra dose as the pain levels increased at different times throughout the day. She wanted to be alert and able to talk with the kids when they got home from school. If that meant she was in more pain than the doctors wanted her in, so be it. She wanted to hear about the kids day at school.

By early March, Dana was becoming confined to the house and spent the days with me and her mom. If she left the house it was to watch Avery play volleyball or the boys play baseball. She needed the help of her wheel chair which drove her crazy. A few of her closest friends were able to see her but she suffered heavily from the side effects of the Dilaudid and the hallucinations caused by pain medicines that are morphine based. Her diet was limited to yogurt and cream of wheat, she would eat just enough to get in her daily supply of pills and then stop eating.  Feeding her became harder and harder and she would eventually allow only me or Davis to feed her. All three of the kids stuck by her and never flinched as she grew more weak by the day. Davis was another level, he took care of her every chance he got and showed more courage and patience than any kid should have to.

Dana was moved to hospice care and from our house to her patents on April 7th. A few days after the move to her parents, the hospice doctor spent an hour or so with us and went through a booklet that basically describe her current condition and why she had only a short window of time left. I don't know if Dana ever opened her eyes during the entire hour, but at the end she started talking to the doctor as if she had understood everything said. The doctor left and Dana was as alert as she had been in weeks. After weeks of not wanting to see anybody outside of family and her best friend from high school, Dana rattled of a list of people she wanted to see and see them now. It was the Friday of the kids spring break and all the kids were at her parents house. The kids and I were able to spend time with an alert and talkative Dana, one last time. She hadn't let a moment go by where the kids didn't know how much she loved them and that our expectations for their future would never change. As Dana got finished telling us how we would all be okay, everybody who she asked to see started to arrive.

Everybody I called dropped everything and came to see Dana. She got to see everyone she asked for and she was happy. Her last ounces of energy were spent talking to her kids and the people she had spent the last 8 years chasing around to baseball games with to watch our kids play, her cousins, aunts, uncles, nieces and closest friends. Within hours her burst of energy was over and Dana went to sleep and only woke up a few times over the last 48 hours of her life to talk to Johnna and Ina, her best friends from high school. Dana passed away at 3:30 on Sunday afternoon with only me and her parents by her side. She did not want the kids with her, she had been with her mom when her grandmother passed away about 10 years ago. It was something she was never able to forget and didn't want the kids to have that image of her. Davis was on a baseball field where he always seems to be, Avery was playing in a volleyball tournament wearing Dana's # 15, and Kyle was with my sister and had spent the weekend goofing off with his cousins.

Dana was gone but everything that we had planned months earlier in Santa Barbara made sure that things went exactly as she had wanted. Dana knew who she wanted to speak, who she wanted as pallbearers, and who would cater the reception. She had forgotten no detail. She had joked with the lady at Eternal Valley back in January that this was going to be a big party. For Dana, this was never anything but her party and it was bigger than I think any of us anticipated. The eulogy was delivered by Brian Jacobs,  Dana had gone to elementary school with Brian and he has been one of my closest friends for more than 30 years. He put more time and effort into his speech than Dana and I could have ever asked for. He was great and so where the next three speakers Johnna, Ina and her cousin Ryan. It was a long rough day, but it was a party she would have loved.

You can't imagine how much you need or will miss somebody until they are gone. You can try and convince yourself how hard things will be, but until you wake up by yourself for the first time in almost 20 years you can't imagine how alone you feel. Nights are miserable and the days are not much better, but you realize quickly how many friends you have. In the two years that have now passed since her diagnosis we we were never alone. Dana's mom was at almost every doctors appointment we went to, her dad was at the house when we got home. My brother called me everyday to see what I needed and would have done anything I asked. My sister took care of keeping kids moving to practices, games and school projects. Johnna drove from San Diego every week to help, somedays she got good Dana others she got the sick as can be Dana, but she always came back.

Everybody has kept coming back. My oldest friend took the first week off after Dana passed away to make sure I was up and moving. He set up lunches, brought dinner for 30 people, and was a stand up comic for my kids at the Dodgers game. 16 weeks later he is still making sure I am up and moving. Dana's mom is still at our house 7 days a week, sometimes to fold laundry, other times to bring dinner. My sister, Dana's dad, and my parents are still getting the kids to practices, and my brother still calls to see what I need. The friends I called and asked to rush over and see Dana have never left. I hear from one or all of them every week. They show up to watch Davis play baseball or offer to go grocery shopping and take the kids school shopping.

Things are still hard, I don't know when that will change. But things are not all bad. Its been another summer following Davis around baseball and football fields. He has had a great summer playing QB for the freshman football team at Valencia and was moved up to the JV baseball team where he will play catcher next season. Dana's cousin Ryan took a team to Cooperstown, NY for a big baseball tournament and Kyle got to go play for him. Avery plays volleyball as often as she can and continues to become more like Dana everyday. The four of us stick close together and spend a lot of time with Dana's parents who have rarely missed the kids play anything over the years.

I don't know exactly how to thank all the people who have helped us over the last two years. The amount of time people have spent going out of their way to make things easier for us is humbling. I don't have the words to properly thank you all for what you did for all of us but I hope you all realize how much it has meant to us.

Staying optimistic during a rough couple of weeks

     I know it has been a while since I have sent out an update but I have had a few rough weeks.  I have had an ER visit, multiple scans, multiple scans canceled, lots of pain and lots of sleepless nights.  I try to deal with them all one at a time but most of the time all I want to do is curl up in bed and take a nap.  Sleeping has become a long lost friend, with all the pain in my back I can't get into a comfortable position.  When you have a sore back it's usually a strained or pulled muscle and ice and heat make a difference. You can lay in a way that gives some relief.  With cancer in your bones there is no relief, it is solid bone that heat or ice will not penetrate or help.  I can't lay a certain way, add a pillow or stretch to help, I just need to take another pain pill and hope the sleeping pills that the doctor gave me will work.

     I had so much pain the past few weeks it was nuts!  I was already at the hospital for a bone scan and had actually had the contrast injection done for the scan but the pain had gotten too bad.  I started by going to urgent care but quickly decided that I needed to be in the ER.  My oncologist always tells me to go to the ER because they have what I need in the way of treatment and speed. An urgent care simply can't do what the ER can do.  After a very short wait I was in a room in the ER and getting an IV.  I was able to get pain meds fast and that was good because the pain got so bad it was like I was going in and out of consciousness .  They had me do a quick CT scan just to rule out a blood clot in the lungs because a lot of my pain was in the left side of my chest and it was difficult to breathe.  The scan showed that the mass on my lungs has gotten bigger which was not good news but at least I knew what was causing the pain.  I was in the ER for about 5-6 hours and once my pain was under control and my palliative care doctor was able to adjust my pain patches I was on my way home.

     I had to go back to the hospital to do the scans that I missed while I was in the ER.  I was anxious to get the results, this scan would be more detailed and be read by my oncologist who review the scans with more experience.  I was happy to find out that the mass on my lungs had NOT gotten bigger. This was great news and maybe the first good news of any type we've gotten in a long time.  I get freaked out when I have trouble breathing and the pain over the last few weeks is constant.  I have started to cough up some pretty nasty "stuff" each morning and that is also alarming to me because it means that the mass is doing something and my body is trying to kick it out!  I wake up with a raspy noise when I breathe and that is how I know something is coming and it is not pretty.... yuck!

   



     Although the scan showed no progress in my lungs, it wasn't all good news. The cancer is spreading in my bones and spreading kind of quickly.  I had a really good conversation with my oncologist and he put it in perspective for me.  Even though it is moving fast, the bones are not a major organ like the lungs, liver or kidneys.  Bones are not vital to life and what they worry about with my bones is fractures.  They have been giving me meds for bone strength from the beginning so I am feeling pretty good about it.  The hardest part about it being in my bones is the pain, and all I have is more pain meds and radiation.  I met with my radiologist today and we discussed radiation but want to wait until I get through this next 3 rounds of chemo to see if it helps.  I start my new chemo on Monday and it's a harsh treatment that can really effect my white cell blood count.  If my white blood count gets too low they will not continue with my treatment.  When I did the red devil chemo last year my count got a s low as 0.5 and I was in the ER. I don't know if I will make it through all 3 treatments in consecutive weeks, we will just have to wait and see.


     I have been trying to plan a get away with some of my extended family and I am having a heck of a time trying to do it.  Part of me does not want to leave because I don't want to be away from my kids.  Part of me wants to go because it would be great to spend a few days on the beach, shopping and just relaxing.  After the past few weeks it makes me nervous to go too far so the plan of going to Cabo is out.  Now that I am starting a new chemo treatment and meds I'm not sure when I will be able to go, I am just going to have to play it by ear and try to get away in March... maybe.  I was able to take a few days and spend them at the happiest place on earth with just the 5 of us.  We spent 3 days and 2 nights and stayed at the Grand California which is an amazing resort.  It was so great to be able to see our kids laugh and just forget about what is going on and have fun.  The park was practically empty, maybe because it was the middle of the week or that the measles scare is still looming, it was perfect for us and so was the weather.  The kids were able to go on every ride they wanted to at least 3 times and I was even able to go on a few as well.  I was just happy to be with them and for all of us to laugh together.

     I had a few visitors and was so excited that a couple of my roomies from college flew in from Dallas and Salt Lake City for a few days.  We had a blast talking, laughing and shopping.  My favorite had to be just hanging out and catching up with all that we have going on.  They were able to come to a baseball game to watch our oldest play and we went out for a great dinner.  They are going to make another trip in a month or so and I can't wait for them to come back out.  Super Bowl was a great day and a ton of fun! We went over to a friends house with about 60+ people and had a blast watching the game.  It was such a good time and it was like being at the game with the 5 TV's and so many people every play had a huge reaction especially in the last 5 minutes.  I still can't get over the ending.  We were rooting for the Pats only because #34 is from our hometown and actually graduated from the same high school that our kids will go to, pretty cool.

     As always thank you for all the love and support and I promise I will post an update next week after my chemo treatment to let you all know how it is going.  Love you all!!

A bit of an adjustment

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.

This next week, I am going to CHOOSE to stay positive and focus on healing.  I have a doctors appointment with my oncologist so we can talk about the timing of the clinical trial as well as my current chemo and bone infusion.  I will let you know how it goes.  I do know they will be changing the meds I am taking for my bone infusion because I am having such a bad reaction to the treatment the first 48 hours.  I have had 2 infusions and both times I have spiked a fever upwards of 104 while at the same time shivering and feeling so cold. Not to mention I am no fun to be around either.  It is such a weird sensation to be  hot but so cold at the same time.  It only lasts for two days, so as long as I know it is coming, what is causing it, and that it won't last long I'm okay. I hope the change in medication will lessen the side effects.  We ended the week with a great dinner with great friends.  It is so nice to be able visit and laugh with everyone.  We have been spending so much time with friends, it's been so fun, a lot of dinners, lunches and just time together.  I can't tell you how much you all mean to me and how your positivity, support and prayers continue to give me strength and motivation to move forward everyday.

Good days, good news and a Happy New Year!

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!!!!

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.