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/

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/

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 :)

 

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!