Friday, April 14, 2017

Woo hoo...I GOT MARRIED!!!!

Greetings from my bed! I am happy to say I was released from the hospital last Wednesday and I've been home resting. I know it's been ages since I've updated my blog so I will do my best to let everyone know what is going on! 

I can not start this without acknowledging the devasting loss that happened after the wedding.  Words can not describe my anguish, sadness, and loss of one of my best friends and mentors. I am so happy that I was able to spend her last 48 hours with her. She told me as she said goodbye that it had been the best night of her life!! I know she meant it and I know she was able to spend quality time with so many people she loved.  I honestly can not even talk about it but I know that Germaine would be so mad at me if I let it consume me like it wants to so I will not give it power and will celebrate the amazing Mama G!!!!

So last we left off I was getting ready to start WBRT - whole brain radiation treatment. I completed 10 sessions on December 16, 2016. Radiation was actually pretty easy. Ha, the hardest part was honestly parking at UCLA! I chose to go to UCLA instead of Cedars since the radiologist there suggested we miss my hippocampus's to try and spare my memory, emotions, and spatial navigation etc. Yep...mouth full I know. Ha, with all of these steroids I'm on I feel it didn't work! I'll just blame me being short-tempered, bloated, just overall pissy on roid rage! 

After completing the radiation both of my oncologists agreed I could take a break from everything. My goal was to enjoy the holidays and get ready for Super Bowl!! 

Holidays were nice and mellow. I have to admit I missed visiting everyone in TX but it was really nice to not have to travel and be able to lay low! Super Bowl and what the heck happened to me after?!?!!? First of Super Bowl was amazing! It was incredible and a lot of hard work but worth every second! I managed the backstage and the B Party Hair & Makeup. We had 40 dancers, 5 band members, 4 BGV, and a hair and makeup team of 20. Needless to say, it was a ton to coordinate but when you are working with amazing professionals it really doesn't feel like a job! I'm always in aw of the pure talent and creative genius I'm constantly surrounded by.  

So, let's talk about what happened next! Not really sure actually. I arrived in Houston on Jan 28th. Tried to go to Chuy's with my parents and was only able to eat a little bit of queso and chips. This should have clued me into something was going on but I just thought it was a travel day and my body wasn't used to it etc. I was super bummed I wasn't able to eat my taco's!!! 

Anyway, crazy busy and running around for the next week. I was feeling weak but it really is amazing how you can really just make yourself keep pushing forward. The mind is an amazing thing! I'm sure everyone would love details on SB but for length and my energy purposes, this will just be a health update. Just know SB was as awesome as you think it would be :) 

So, I knew I just needed to get to the 6th! At this point, I'm not eating at all and throwing up every few hours. All while keeping it from everyone around me :( but handling my biz and making it happen! 

However, by the time I get to my parent on the 6th I'm exhausted and basically didn/t couldn't get out of bed for days. I really hoped to visit with more people I just wasn't up for it. Then the vertigo hit! Man..I swear ill take a migraine headache over vertigo any day. At this point, I just wanted to get home and be done with everything. Let's just say the plane ride was horrible and even the drive to get me home sucked. I knew I was sick but I wasn't aware of how sick I was. I had been seeing this crazy Dr. in SF and he just kept telling me it would pass. Luckily I am no longer seeing or listening to him because this was not something that would just pass! 

The next few days honestly are a total blur and I do not remember. They talked me into letting them call an ambulance and I spent the next few days in ICU and the hospital fighting a blood infection. We are not 100% sure where or how it happened but I do a bile stent replacement every 3 months and their biggest warning is acquiring an infection so I guess that answers that! 

Unfortunately, the time spent in bed in TX and in the hospital really took its toll on me physically and my leg muscles have completely atrophied. It's kind of crazy how quickly it happened. I literally can not stand up on my own without help or the use of a walker. So what does that mean and what is going on with me daily?!?! Well, when my health started to decline a few months ago Kat Thomas came on full time as my assistant. Just overall life saver and honestly really stepped up and took over my responsibilities at the Warehouse and helped things keep moving when Gaga didn't want me to work at all. Now we know that's not possible but I love and respect that she wanted me to just focus on my health and getting better. Ok, so anyway....Kat in no way signed up to be a caregiver, but as you do when you care about someone and are professional you step up and do what needs to be done. When we were getting ready to come home from the hospital we realized how sick I really was we made the decision that we needed to bring in professional help. As much as I hate to admit it that meant 24-hour nursing/staff.  It has been an adjustment but I have a nurses that rotate in 12-hour shifts. We have also put together a Palliative care team. Palliative you say? Yes, I had a real issue with this concept and word. Just like Hospice. Makes me think they are just getting me comfortable to die. HOWEVER, It was explained to me that Palliative care is the opposite, it's a team that is doing everything they can to make me comfortable and gives me all of the tools to get stronger so I can fight this, win, and survives!!!! So not to keep dragging this on but the Palliative team has really changed my thoughts on pain management and has put an entire team together. Physical therapy, Dietician, nursing staff, all of the tools that I need a shower chair, breathing treatments, I really could go on and on with everything I'm having to do to just survive at the moment but just know I'm fighting every day and with the help of a very large team I know it can happen!! Honestly, if it wasn't for Gaga and the financial contributions from everyone so far I really do not think I would be here. Let's just say I understand why people give up and die because they do not have the resources that I have been given. It's really given me some thought on starting a non-profit. 

Anyway..more on that later!!
Now a quick blurb on the most amazing day of our life :) Our awesome wedding!!!! Believe it or not, it was a fight and almost didn't happen. Literally why it was planned and pulled off in two weeks! Yes, two weeks! Now you can do that when you have amazingly talented event friends and an Angel that tell you she is going to throw you your dream wedding and there are no arguments. So I cried and cried and if you can believe it let go of total control (i know crazy right) sent them my Pinterest and just asked when they wanted me to show up!!!! Ha, ill do a facebook post at some point soon that will honestly look like a sponsor list! So many friends stepped up and donated time, services, product, you name it. The universe literally came together to give us our dream wedding and there is no way I could truly acknowledge and thank everyone for it. are the links so you can enjoy the pictures showing the amazing gift we were given from so many people!!!
Password for guests: sonjaandandres
no password needed

Well, it's time for my breathing treatment! I hope this gives you an insight into how things are. Honestly, I've got good days and bad. It is what it is but I'm hanging in there. It's taken me three days to even write this but I know everyone loves me and just wants to have an idea of what is going on. I promise to continue to do my best, to be honest, and keep everyone in the loop! 
oh...I am doing Chemo, I have one last treatment on next Thursday. Other than mouth ulcers which suck it's actually been pretty easy! I also did another MRI while I was in the hospital and everyone else thinks it's good news! I say everyone else because the tumors are a little smaller and there are no new additional lesions. I know, I should be happy and I am but i had expected or I guess had hoped that the brain radiation would have taken care of them. I will take the small miracles I get and be grateful for the positive news!!!! I really need to wrap up!!!! Ha I love you all and I will do my best to give more updates. As of now, I'm still seeing limited people until my white cell counts are little higher! 

xoxoxox, love you all