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! 

OK...so 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. So...here 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!!!! 
Ok...now 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







Wednesday, December 14, 2016

Long overdue update!


Hey, everyone! I know it's been awhile! We've already established I'm not the best at keeping up with this blog. I've probably expressed before, sitting down and trying to put everything I'm going through on paper isn't exactly the most pleasant experience. However, I know how important it is the help educate everyone on what I'm dealing with. Especially to reassure everyone I'm still staying strong and committed to kicking this cancers ass!!!

So..where to start! As you may be aware I've decided to go back to brain radiation. This was not an easy decision. I had a lot of sleepless nights and on my knees praying for the right answer. Even though I'm still confident in my initial choice to stop WBRT (whole brain radiation treatment) and start on a new protocol with the oncologist in SF. After my MRI in October both of my oncologist from Cedars and UCLA were really pushing for me to get back on a standard protocol as it looked like everything had doubled in size and count. My SF Dr. claims things are dead and it's the necrosis they are seeing and not new or larger lesions. This is why it was such a hard choice. BUT I went with my gut and trusted UCLA and Cedars were correct.  As I put it I'm just throwing the kitchen sink at this cancer as this point. Crazy drugs I don't know what they are..sure, WBRT...sure!

After meeting with both Cedars and UCLA I decided to do my treatments at UCLA. I really like my Dr. there and she was the first to suggest that we miss the Hippocampus during treatment. My main concern with the WBRT is the cognitive side effects. At least they are hoping I'm going to be around long enough to deal with side effects that usually do no present themselves until 6 months to a year after treatment. So thats something. :)

http://brainmadesimple.com/hippocampus.html

I'm also taking a medicine call Memantine. It is a drug for Alzheimer's patients. They have done studies that have shown that it helps with memory and cognitive issues as well.

https://en.wikipedia.org/wiki/Memantine

I just finished my 8th treatment today and I will complete 10 of 10 on Friday! I have to say it's been pretty easy. 10 treatments are such much more manageable than the 33 I had to do on my breast. Due to swelling of my brain they wanted to start me on steroids. I'm hoping once I wrap they will start to taper me down. I have to admit I'm not mad at them because they do give me energy and I have an appetite.

Speaking of appetite I do not believe I really updated everyone on my last ERCP results. As you may recall I was in the hospital in August and was extremely sick for several months. During my initial ERCP and stint placement things were too inflamed for them to accurately diagnose if the cancer had spread. Well, when I did my second one in October they were able to do a biopsy this time. Unfortunately the biopsy came back positive for cancer in my bile duct and pancreas. This was not news wanted to hear but the good thing is it's so small nothing is even showing up on a CT scan. I guess the inflammation was good so we could get ahead of it. I go back in for another ERCP, stint replacement and biopsy on December 30th.

As of now the plan is to finish WBRT and hold off on anything else until next year.  My Cedars Dr. wanted to start me on Xeloda http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx. I have approval from insurance but my UCLA Dr. wants to give me a break for the holidays. So I will  meet with my UCLA onco January 10th to discuss our next steps dealing with my body. There are a few exciting trials available. The main one I'm interested in is an immunotherapy and chemotherapy trial. There is a new immunotherapy for Lung cancer called Opdivo. You've probably seen the commercials. Ha...nice people looking up at a building saying you can live longer! Of course the commercial ends with minute long list of side effects. Good times! Anyway, It has only worked with lung, and metastatic melanoma. However, they are having promising trials mixing it with breast cancer chemo. We shall see.

http://www.usatoday.com/story/news/health/2015/01/12/new-drug-opdivo-successful-in-lung-cancer-trial/21659553/

So..for now I'm just staying positive and enjoying feeling a little better. Since I'm unable to travel right now we are happy to lay low for the holidays!  Andre has been working hard on the new Will Smith movie call Bright. He's also gearing up to starting Ray Donavan again next year. As much as he wants to be by my side all the time I'm so grateful when he is working so his mind can focus on something else. I'm really hoping we can try and take a little weekend vacation somewhere. A change of scenery would do us both good!


Once again I can not thank everyone enough for all of your prayers, love and support. It really keeps my spirits up. I cherish every Facebook post, text, call, donation, gift, you name it! Everything is just a big beam of light to rev me up and keep me going.

Until next time! Merry Christmas, Happy Holidays, and have an amazing new year! 2017 has got to be better than 2016!

xoxoxoxo
Sonja & Dre

https://pages.giveforward.com/medical/page-y4r7hp2/

http://radio.com/2016/10/22/lady-gaga-sonia-grigio-girls/

Sunday, September 11, 2016

Update...about as witty as i'm going to get today


Hi, everyone! I know it's been ages but I wanted to try and get an update out. First I wanted to thank everyone for their patience in my replies. I'm hanging in! It hasn't been an easy few months and this post may not be the easiest to read.  

Honestly, I have more bad days than good and for the first time, I understand how some cancer patients just don't want to fight anymore. I'm tired, tired of not being able to eat, tired of throwing up, tired of being in excruciating pain, tired of so many other things I will not mention. Tired of feeling guilty for not being able to return calls or text or even leave the house. Let me just lay it out there...it is difficult to breathe sometimes so talking on the phone is very difficult. Not to mention it increases my nausea. On top of my phone taking a crap it's not easy for me to always respond to text either. My favorite text are the ones that end in..no need to respond just know I'm thinking of you! Thank you. I love everyone and am so blessed to have so many people that care for me so hopefully my update will help some to not take it so personally when I do not call back or ask for them to communicate with Kat or Andre.

So now that I got that off my chest...what have I been up to?!? Not much of anything but trying to fight this cancer! Good news is according to my new oncologist my scans are looking better. My last brain MRI showed 4 sizeable tumors instead of over 10. So that's pretty great! My lungs are starting to look like nothing but scare tissue and fluid. No noticeable "defined" tumors. The fluid is supposedly the bodies response to dying cancer. That is a good thing but feels like phenomena and drowning with my ribs popping out of place. Good times ;) My liver and adrenals are now looking clear but I do have a new tumor on my left kidney. However, the doc pointed out that half of it was grayer than white which in his eyes means it's already half dead. 

As some of you may be aware I spent a week in the hospital in August. I had been feeling pretty horrible for a few weeks. I was unable to keep anything down, was jaundice, and was in constant stomach pain. Finally, when my labs revealed that my Bilirubin level was 12.4 I headed straight the the ER.  I was admitted immediately and was scheduled for an ERCP.  The scans were showing inflammation but it didn't look like I had any gallstones. When they got in my bile duct was so inflamed that they placed a stint. Luckily my liver, pancreas, and gallbladder all looked ok.  

I was starting to feel a lot better after my release and was able to eat some solid foods and had some more energy to get around. I was hoping I was on the upswing! Well, that didn't last long. Let's just say Andre's new name for me is Reagan..yes as in the Exorcist! Ha..poor thing if it wasn't projectile vomit coming out of my mouth it was screaming and cuss words that probably do not exist. Other than waking up with a chest tube after having part of my lung removed I do not recall ever being in so much pain. Ha, and I've had multiple surgeries and been hit by a car! I seriously thought I was dying and wanted to die all at the same time. Thankfully it abruptly ended as quickly as it started after about 45 minutes. I, fortunately, have not had the same intensity of pain but I'll have a flare that keeps me bedridden and miserable for 2-4 hours sometimes. Sometimes it entire days that I have a hard time getting off the couch. 

I can not express my gratitude enough for the fundraiser and all of the support! Andre being able to be by my side and not work for a few weeks has been a God send. My guardian angle Gaga has stepped up in so many ways as well. One being hiring Katie..aka Katharine...aka Kat Thomas to be by my side none stop. Many of you have spoken to her as she has helped keep people in the loop. I hate calling her my assistant because she is so much more and has become a dear friend and caregiver. 

Ok..I know this isn't my usually happy update! Just know I'm still positive and fighting! My oncologist says we are in the home stretch and predicts I will be in remission by the end of the year. Hey...from his mouth to God's ears! I have all the faith that I can beat this and I will. I just need to weather the storm a little longer.  So please bear with me as I try to recover and deal with getting hit by a double CAT 5 hurricane! 

https://pages.giveforward.com/medical/page-y4r7hp2/



Friday, June 17, 2016

Hair Today Gone Tomorrow


Greetings from Kauai! Yes, I'm in Hawaii! My dear friend Stephanie is celebrating her birthday and had invited me a few weeks ago. Per my usual response lately, I declined with a myriad of excuses. Not enough money, too much going on with work..blah blah blah! Then I received the fun news of the spread and the immediate start of radiation so it was totally off the table.

Well....after three radiation treatments I decided to pump the breaks. Yes, you read that correctly. I did an 180 in my treatment. I realized I just blindly went into the new treatment protocol. I think when I heard brain, my brain just froze and like a sheep I just followed. It all happened so fast I didn't have a chance to really get second and third opinions. I briefly discussed it with other doctors and they all said the same thing but I still felt I needed to explore other options.

I decided to meet with a new doctor (thanks to my guardian angel Tom Hoppa!) that wanted to try a few new drugs. So with faith and moving all of my eggs from the standard traditional basket to a trial basket I jumped in head first! I stopped my current protocol, drugs, radiation and all and started a new protocol.

I figure I've given my other doctor four years (he can argue he gave me four more years) and I could give this doctor two months. I'm doing bi-weekly blood work to monitor my tumor markers and I will do a brain scan and chest CT in six weeks. If things haven't gotten better then I will decide if I want to continue or go back to the standard treatment. My gut is telling me this is the right move. Plus whole brain radiation isn't going anywhere. That option will still be there in two months if it's needed. However, there is no reversal of the side effects of WBR (whole brain radiation) and if I can do something to avoid it, then what do I have to loose!

So..here I am! Sitting on a couch, listening to the rain in a tropical paradise! My friend Cortney gave me the miles to get here and the house and trip were already set up! How could I say no! I'll be soaking it in for a week!

I will also try and tan my newly bald head! Yep..you read correctly! I'm bald! I thought I had avoided the no hair bomb when I stopped radiation. I guess my follicles had another idea. A few days ago I noticed a lot more hair in the drain of the shower. Then the next morning my hair literally started coming out.


I asked Andre to cut it to my shoulders with the assumption that less weight would slow the process down. 


Ha, well I was wrong! They next day I already had some bald spots, it was coming out in clumps and fast. So yesterday I made the decision to just shave it off! I ask Skylar to come over and document it. We are putting together a video and full photo's but I hope you are sitting down! Check out some of the moments below :)


 


Saturday, May 28, 2016

Well..here we are again!


Greetings everyone! You're probably already guessing if I'm sending a new blog post that I've got some new news. Well..you would be correct!

Where to start! How about just putting it out there. This cancer party has decided to move to the brain. I know...I'll let you take a second and wrap your head around that one. No pun intended! Not the news I was expecting or wanting either. So..let me catch you up.

As many of you are aware my last scans in March were "inconclusive" in my lungs. The radiologist thought the new spots were most likely inflammation from an infection but wasn't 100% sure. So we decided to schedule more scans in May. 


In the beginning of April I had been feeling dizzy and nauseous a lot. It got so bad one night I ended up in the emergency room. After some great anti dizzy and nausea meds and a CT scan of the brain, they sent me home with a "brain looks good and it's just vertigo". Well I had a pretty crappy few weeks but I finally turned a corner and started feeling better. My migraines seemed to be stronger and more often but since I've been a migraine sufferer since 4th grade I just figured it was part of the vertigo. 

So May rolls around and my onco wants to schedule my chest CT scan, he suggests we also do a brain MRI since the CT they did in the ER didn't really show the inner ear and that is usually the cause of vertigo. 

We had a lot going on with work and I wasn't sure where I would need to be so I set up my scan for last Saturday. I actually would advise it! Saturdays are great! It's really slow and they get you in and out! Hey..i find the joy where I can right! 

Cut to Tuesday when my onco calls me on the phone. He immediately apologies and says that he would prefer to have the conversation with me in person but that he is in NY for the week. My heart immediately sank. I was waiting for him to say that the tumors in my lungs had grown. NOT that there were new spots in a new location. He started by saying that my lungs look good. The inflammation had cleared up and the spot that is still there is barely detectable. We figure I had phenomena over the holidays when I was really sick that was not diagnosed. I knew I felt like crap in Aspen when I had to work but just figured it was a cold mixed with altitude sickness and cancer in the lungs. 

Anyway, he proceeded to explain that there were several spots in my brain. All be it very tiny there were multiple locations. Because of this surgery and targeted therapy are off the table. He is suggesting full brain radiation. He gave me the number to the top brain radiologist at Cedars and suggested I call him asap. I called and they fit me in that afternoon.

Andre was on a new show that day so the last thing I wanted to do was call him and freak him out. I wanted to kind of get my grip on it and find out exactly what was going on. So I called my friend Cortney and she came to rescue and met me at the radiologist. As I always say it's best to have a friend or someone else there to take notes and ask questions you may be forgetting.

The doctor took us into his office and showed us all of the scans. He pointed out that the three main ones (didn't get a total count but more then 5 and less then 10) were located by the part of my brain that controls equilibrium (bing that makes sense) my sight, and my left side mobility. The largest is only about 6.2 - 8mm. Tiny..that's barely the size of half a fingernail. BUT enough to cause swelling and side effects. Luckily my vision and mobility seem totally fine. Only issues is the dizziness and nausea. Once I see my oncologist Ill get my full scans and print out so I can totally understand how many there are, where each one is located and it's size.

OK..so for the treatment....They want me to do three weeks of radiation. That is a total of 15 treatments, every day, five days a week. I went back on Thursday to do another scan and they fitted me for my mask. Here is a youtube of the process. It was pretty easy and it was actually a bit of a reunion. I knew both of the techs from my radiation in 2012. It was actually pretty comforting to see them and I immediately feel at ease and was cracking jokes as always.

https://www.youtube.com/watch?v=x7OAR3oJknY

I've sent my scans off to UCLA and Sloan Kettering. As of now the consensus seems to be the same, full brain radiation. This way they get the ones they see and the ones that may still be hiding. My first treatment will be next Wednesday at 5:45pm. I will set up a schedule when I'm there to go at the same time everyday. I'm hoping for a morning appointment so I can get on with my day!

OH..did I mention on top of all of this we're being evicted from my apartment I've living in for 17 years! Developer bought half of my block and is tearing everything down. They gave me a year extension but my amazing friends and boss put their foot down and said I was moving this weekend! Yes..this weekend. So we were shipped off to a hotel in Santa Monica as a team swooped in, packed and moved us! When we check out of the hotel tomorrow I will be going to my new apartment all moved in!

This is getting pretty long so I'll wrap it up. I'm in great spirits. It is what is it is and the radiologist is confident that the radiation will take care of everything. Yes, there will be side effects, I'll go into all of those at a later date. BUT it's nothing we cant get through and deal with. I literally have a village of love, strength, and support behind me!

I thank you in advance for all of your prayers, love, light, and healing energy. Please keep Andre in your thoughts and prayers as well as he is really having a hard time with all of this. He is my rock as always but I know he's putting on a brave face for me. God really blessed me with a good one ;)


LOVE YOU ALL! UPDATE AGAIN SOON I PROMISE!

Friday, October 9, 2015

Stage 4 and 40

Hello everyone!!! I am still basking in the post birthday love glow! 40 is going to be awesome!

First, I wanted to take a moment and try to put into words my gratitude to everyone who has donated to my Give Forward page. Every cent is helping me find alternative treatments and ways to keep me physically and mentally healthy. I also want to say that every hug, text, kind word is equally important. Everyone knows that I feel this fight is 80% mental and 20% medical. So thank you for your donations, prayers, love, light, and positive energy...its workin

https://www.giveforward.com/fundraiser/3qt7/team-sonja-kicking-cancer-s-a-

I know I'm long overdue for an update but I've figured out that writing seems to break my beautiful veil of denial. It's strange, even when I talk about it I feel like I'm talking about someone else. there is something about sitting down, thinking out, then putting it all down that really makes it real. So, forgive me for living in my fantasy world and not keeping everyone in the loop. I know everyone only wants to know how I'm doing because they love and care for me. Once again, i promise I will try to do better!

So..with that being said, lets take the little box off of the back shelf of my mind and lets talk about this cancer. Yes, it's still here. Yes, I'm still in treatment and will be for the rest of my life. So before I get into all of that I'll take it back a bit for any of my new readers.

I was originally diagnosed with Stage 2 breast cancer in July of 2012. My initial treatment was a lumpectomy of my left breast with a partial mastectomy on both breast. Followed by seven weeks of radiation and the hormone therapy Tamoxifen. I considered August 15, 2012, my initial surgery, as my cancer free date. In Janu
ary of 2015 I started a round of scans in the hopes that I could end my tamoxifen treatment so Andre and I could start a family. Unfortunately these scans showed nodules on my lungs. On February 9, 2015 I had a VAT to biopsy the nodules.  I woke up the the news that they removed 3% of my lung and confirmed that my breast cancer had metastasized.

I was fortunate that the FDA had just approved a new drug called Ibrance that was for my type of cancer. ER+, meaning my cancer grows from estrogen. I would be one of the first in the world to start this new drug in a non trial form. On paper my treatment is easy! Two pills a day and one shot a month. However, what this treatment does to me isn't so easy. I wont go into all of the details but chemical menopause at 39 (now 40 as of the 7th!) is not ideal. If the hot flashes and night sweats were not bad enough, I've now been diagnosed with Osteophyte's and cervical spondylosis. In lamens terms bone spurs and arthritics. Nothing like a lack of estrogen to speed up aging. So to say this 40 year old body feels 60 most days is not an understatement.  But hey..I am grateful to every day and know that my cancer adventure has been a million times easier then others.

The good news is that something is working! I have scans every three months and blood work done monthly. So far my tumors were half the size in May that they were in January. My scans in August showed that everything has stayed the same! In stage 4 terms that is amazing! My next scan is in November. Prayers and fingers crossed that things have shrunk or at the least have stayed the same.

I really feel that all of the alternative things I have been doing are as big a help as the meds. Below are the main things I've added or changed in my life.


  • Diet - I try to eat organic whenever possible. I eat a predominately pescitarian diet and limit sugar, caffeine, alcohol, and dairy. I initially did a 28 day food delivery service, followed by a 10 day raw cleanse. I will try and do 3-5 day cleanse every six months. 
  • Exercise - I work out with my amazing trainer Jennifer two times a week on the Gyrotonic and Power Plate. We are working out years of abuse and the sessions are more physical therapy then a work out. One day we'll actually get to train but now we are working on breathing, core strength, and overall health and rehab from my surgeries. I didn't even know what an IT band was before this, I certainly didn't know it hated me! :) Jennifer has been an integral party of my team and a wealth of information, experience and support. She works with other cancer patients and gives me hope that I can beat this through their stories of remission.  http://embody-health.com/
  • Yoga - Lynn is part therapist/part life coach/part kick my ass yogi and Guru! I do yoga three to four times a week. My practice has grown leaps and bounds since I started in March. I'm the opposite of most people and have too much flexibility. I had no idea you could reverse it by strengthening and what a difference it makes. Lynn also has me on on array of aryvedic herbs and tummeric. http://www.liberationyoga.com/bios/lynn-taylor/
  • Meditation - this is something that I struggle with but know it is as important as everything else. I do my best to meditate 10-20 minutes in the morning and a 10 min or 30 min sleep meditation prior to bed. It depends on my mood but I have several guided mediation's that I like. Anything from a sound healing meditation at a certain frequency, chakra balancing, primordial sound, or just a standard relaxation. I've also become fond of a few sleep hypnosis meditations. 
  • Hyperbaric Oxygen Thearapy - This is a pricy one but after my first scan I'm a believer! Attached are a few articles that can explain it better than can! http://www.nejm.org/doi/full/10.1056/nejm199606203342506   http://www.beverlyhillshyp erbaric.com/index.html
  • Far Infared Sauna http://www.mindbodygreen.com/0-12265/6-benefits-of-infrared-sauna-therapy.html                                                                              http://www.ameerrosic.com/infrared-saunas-kill-cancer-parasites-yeast-chronic-infection/
  • Accupunture and energy work - I try to make it to accupunture once a week. This is especially benifical when I have my Lupron shot that brings on my migrains.    http://www.healingstudiola.com/about.html
  • Vitamin IV infusions - In addition to my oncologist checking my tumor markers and my white blood cell count, I also try to keep tabs on my vitamin levels. Vitamin D & C are especially important to my overall health. When i'm feeling especially week I'll go for a super charge or vitamins!  http://www.cienegaspa.com/vitamin-therapy/
  • Most important..Love and Laughter! 
As you can imagine none of the above is covered under insurance and is not cheap! I will not even go into the bills that are stacked up from the scans alone! I am blessed to have an amazing boss and emotinally and finacially supportive friends! Thanks to you I intend on being here for 40 more years! 

I'll keep this update informative! I have my next scan in November but I promise I'll blog more! Trust..I have a ton to say on the "pinkwashing" of breast cancer in October and the lack of support for the only type of breast cancer that kills... Stage V! 



Tuesday, March 10, 2015

Health takes work!

Hi everyone! I know I know! I'm way overdue for an update! The outpouring of love and support has been overwhelming!  Words are not adequate to show my gratitude. I know I could not do this without your emotional, spiritual and even financial support. I have to admit that the fundraiser was a hard pill for me to swallow, but I have realized that my lesson this time around is to accept help. I'm sure I was saying "I've got it" at the age of 2! However, sometimes in life you need to retrain yourself to just say THANK YOU! SO THANK YOU!

So..onto the good stuff! Below is a link to my new doctor, Dr. Patrick Soon-Shiong. Yes, if you are in the know that Dr. Pat! I'll give you a minute to watch his 60 min special. Well..about 13 to be exact ;)

http://www.cbsnews.com/news/billionaire-doctor-fights-cancer-in-unconventional-way/

Ok! Pretty amazing right! Thanks to my amazing boss, who picked up the phone and called on my behalf, he saw me the very next day! Our initial meeting was upsetting and hopeful all wrapped into one. You never want to hear "time is of the essence" or "I wish we were speaking in 2012". However, I refuse to look backward. Only forward with optimism and faith.

I'm currently in the process of obtaining my actual biopsy slides to bring to Dr. Pat. As you can imagine, getting paperwork completed in a hospital is a nightmare, imagine trying to get actual tissue samples released! I sent all of my paperwork in on Thursday, called on Friday. When I had still not heard from anyone on Monday, I showed up at the records office. They tried to play the oh we never received it. I was like check again, it was sent at this time on this date. Oh..there it is, we apologize it was never entered. My response was..well enter it now; I'll wait! I was then forwarded to the pathology department who said it would take 3 to 4 days to process. My response..well, since your hospital missed my Stage IV diagnosis I'm switching hospitals, I appreciate if you speed up that process. He assured me he would do his best. Let's just say I anticipate I will have to make a personal visit again tomorrow.

Now I'm not actually blaming my Oncologist or Cedars. I know that we have done all of the appropriate testing, etc. However, I am inclined to go with Dr. Pat and that with other tests and looking at cancer from a cellular/micro level it would have been caught sooner. I've noticed that there really needs to be more education on a Stage IV diagnosis. I really think we need to change the way people think about it. It's not a death sentence. Unfortunately, that is the only way people look at it. It's really about quality of life over trying to beat it. Well..that's not how I think. I have full faith that I can beat this. Yep! I have the same attitude I did when I received my Stage II diagnosis. Just a lump in the road that I will crush!

On other fronts, I am 100% focused on my health. I have been instructed I am not allowed to work. If you know me, you know I did not take that well. I love my job, and we're in the middle of a huge move/project. However, when the boss tells you to stop working, you listen! In her words, my only job is kicking cancer's ass. So..what does that mean?!?! I now do yoga three times a week; I have a trainer I work out with three times a week. I do cardio at least four times as well. Yes..I'm basically working out twice a day some days. I've cut out alcohol, dairy, caffeine, and sugar. I also 100% organic food delivered daily. Oh did I mention hyperbaric oxygen chamber sessions as well as an acupuncturist. So basically I'm not having any fun but I know it will be worth it! I believe cancer can be fought with food and optimal health.

I promise I'll be better about updating! Again I can not thank everyone enough!

I'll leave you with deep thoughts from Sarah Tanno and Jazz!







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