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!

http://gfwd.at/1EFIaVN

Here we go again!

Rocking my BTBC shirt, holding the jar of positive
notes/thoughts LG, Ashley, Sarah, & Freddie made for me!

Greetings everyone! As many of you may have guessed, if I've started my blog up again the outcome was not scar tissue. I apologize for the delay in information, but I needed to process everything and make sure my parents and close friends were aware before sharing on social media.

Sooo...the results! Well, they actually knew during my surgery that it was metastasis breast cancer. They pretty much told me that when they scheduled the surgery but you know me..always the one to be optimistic!

OK..i'll slow down for everyone and give you a minute to digest. Yes, it's official; my breast cancer has come back in my lungs. It is considered metastasis breast cancer, not lung cancer. Commonly referred to as stage four breast cancer. BTW I refuse to even use a capital letter when referring to it.

I will say this now, GOOGLE IS YOUR ENEMY! Lol, do not google stage four or even metastasis breast cancer.  It will only give you death and gloom. I, however, am special! Not only am I special, we live in a time of amazing medical breakthroughs. So much, so that the FDA just approved a new drug last week that works wonders on my type of cancer. Did you read that! Just last week a new drug was approved that has amazing results!

So the basics! We were mainly waiting on the pathology to confirm that my cancer was still ER+ HER-. What that means is my cancer grows from estrogen. So the first step is to shut my estrogen off. We've been doing that with Tamoxifen, but that was obviously not enough. This is a lesson in being careful what you pray for! haha..my whole goal has been to get off the Tamoxifen so we could get ready to get pregnant. Well..my prayers were answered! Ha, I'm off the Tamoxifen! ;)

I'll stop for a second and remind people that are new to this blog or still taking it in..I make jokes! A lot of them at my expense. Know that any statement, like the one above, is for a laugh! Sometimes the truth really is the funniest antidote.

Ok..back to the basics! The good news is the course of action for my type of cancer is hormone therapy, not chemotherapy. Everyone knows I am not a fan of chemo and feel it does more harm than help. Especially for my type of cancer. I'm not knocking it. It has worked for several of my friends. I'm also not saying that if I needed another option I would absolutely do chemo! What I am saying is I know mentally, physically, and medically it's not the right move for me. What is the right move is shutting my ovaries off and fighting this thing that way!

So remember earlier that I mentioned what amazing times we live in! Well, just last week the FDA approved a drug specifically to fight my kind of cancer! I'm the first patient my oncologist has put on it. It's called IBRANCE and is used in conjunction with Letrozole and Lupron. I received my first shot of Lupron today. Lupron is the drug that will shut off my ovaries. At this point, there is no reason to discuss a hysterectomy. As I've frozen eggs, I'm totally open to any and all options.

Up until a week ago the course of action for my type of cancer was a combination of Lupron (shot once a month) and a daily pill of Letrozole. Now we can add Ibrance. Below is the press release of the new drug.

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm432871.htm

Ok, I'm still educating myself and getting second, third, and fourth opinions! However, I wanted to let everyone know what was going on.

As you can imagine it's been a lot to bite off but Andre is being amazing as always! Words can not describe how blessed I am to have him as my rock, my partner, my support, my love, my everything! You know me I'm more concerned with how he is dealing with everything. I'll be honest it is a bit of a roller coaster but that is to be expected.

How am I doing you ask!?! I'm actually ok! I'm sure I'll have some bad days. It's not an easy diagnosis to hear. I have chosen to think of it as a chronic disease diagnosis. Meaning this is something that I will have to keep in check for the rest of my life. I expect that life to be long and happy!

I will admit this surgery was a bitch to get over! I'm hoping to get the pain under control way before they take the stitches out next Friday. As of now I'm still watching the clock for my next Oxy! At least they gave me the good stuff.

I can not put into words how amazing everyone is! I am truly blessed to have each and every one of you in my life. I apologize if I'm a bit slow getting back to everyone but as you can imagine I'm a bit inundated! Keep all of your prayers, meditation, love, light, chants, energy, you name it coming! I'm on so many prayer lists I official have a Jewish name! I truly believe every thought, intention, and energy counts. Together we will beat this!

I will leave you with deep thoughts from Lady Gaga! Ha! My amazing tour family took the time to write a ton of little positive notes and placed them in a jar. Anytime I feel sad I'm supposed to pull a note from the jar. They gave me this jar on Wednesday and today was the first day I pulled a note! Not really because I was sad, I just wanted a little encouragement before I met with my doctor. It did the trick!

Love and Light to you all! In the words of Andre "WE GOT THIS"

Rads aren't bad...so far!

Hello everyone! I know I know...I haven't been very good at updating everyone. BUT...that just means I'm feeling better and I'm out and about! Since it's been so long I'll back up a bit! Last update was the great news that I did not have to do chemo! My oncotype test results came back at 12! I was hoping for under 18 but would have been happy with anything under 25! So 12 is awesome!! With that news we moved forward with radiation. Of course you know me I had already met with the radiologist before we even had the results. Some people call that proactive but I call it telling the universe what is going to happen! Just to make sure everything else was good I also did a bone scan and a PET scan. All clear on all fronts! Hopefully I'm done with the scans and the nuclear medicine for awhile! It really is such a double edge sword. You read all of these things that X-Ray's and scans themselves cause cancer. When you have cancer it seems that you are doing some kinda of scan every other day! 

So...radiation! Or RADS as it's so lovingly called. Well its not exactly rad...BUT it isn't so bad. ;) So far! Today marks my 7th treatment. I will do a total of 33 sessions. I go every morning at 9:30am, five days a week. It looks like I will finish on November 7th. Honestly it's super easy. Door to door the whole things takes about 30 minutes. Radiation is cumulative so it takes a few weeks for any side effects to kick in. So far so good. I have a little bit of a blush as they call it but I'm hoping that is all it does. One of the side effects is that your skin burns, just like a sunburn. So when I say blush it just means my skin is a little pink.  Hey...I'm a white girl...its bound to happen! Another side effect is fatigue. Because I'm generally fit and active they are saying it may not hit me too hard until the end. Remember it' cumulative so sometimes you're hit the hardest at the very end and 10-14 days after your last treatment. 

Physically I'm doing great! Scars are healing well and I feel pretty good. I definitely tire out a lot quicker then usual and I can not be in the sun. I'm learning to listen to my body and rest when I need to. Emotionally I'm going a little stir crazy. If you know me you know I'm not one to sit still. Not being able to travel and work is killing me. Andre has been amazing at dealing with my "I'm bored: and "I'm out of the loop" temper tantrums. 

Well....that's it for now! I'm really looking forward to my birthday this weekend! Lot's to celebrate!!

No Chemo!

Hi everyone! Sorry I haven't posted in a while but on top of everything else my computer crashed! So I hijacked Andre's computer to update everyone. First and foremost we finally got my oncotype test back. I am so excited to let everyone know that I do not have to do Chemotherapy! Woo hoo!! To break it down they basically score your reoccurrence rate 1-  100% and if you fall below 31% they generally do not recommend chemotherapy. I am so happy that my surgeon recommend this test and that I waited for the results. Disclaimer - to anyone else with breast cancer reading this oncotype test ,from what I understand, is best only if you are ER+ and node negative. The lower your reoccurrence rate the less likely your tumor is to return and respond to chemotherapy. Hence no reason to put your body through it. You will do better with hormone therapy. It's so weird I was ok with the side effects part of chemo. (well in my head right now) I already had some fun haircuts and dye jobs planned before my hair fell out. Not to mention between Gaga and Andre I could have a different amazing lace front wig everyday! It really all came down to time! I just do not have time to deal with it! (yes yes in the scheme of things what is 3 months) It would have kept me off of the road until the end of the year and that is just not an option! Luckily it doesn't have to be! 

While we were waiting for the test results I went ahead and met with my radiologist and finished my fertility treatments. Everything  moved smoothly and quickly with the fertility treatments. Other then being time consuming and expensive it was pretty painless. If I ever need to give myself injections for anything again it will be a breeze! The aftermath of retrieval on the other hand has not been fun. My retrieval was schedule for Monday morning. I guess I need to start mentioning to any anesthesiologist that I have the tolerance of a horse! Meaning it takes A LOT to knock me out and take care of the pain. Most people are pretty much already asleep by the time they wheel them into the room. No...not me I was still talking when they were ready to start the procedure. I'm not sure if they wanted to knock me out or just shut me up! Regardless it took a lot more then anticipated. Which I've heard often! (yes that applies to shutting me up as well) I take after my father in this regard. All in all I was in and out in about three hours! My Dr was very happy they were able to retrieve 16 eggs. From what I understand that is excellent! Now the recovery on the other hand has not been excelent. I wont go into detail but imagine the worst gas pain you have ever had...like stop you in your track...double over in pain, pain! Yep...that's what I've experienced the last two days. I just wish it was just gas...I would know how to deal with that! Andre wouldn't be happy but I would! hee hee! I'm going back in for a check up tomorrow and hopefully it will start subsiding and is normal. 

Ok, so whats next! Radiation then if all goes well back to life with some hormone therapy thrown in! Friday I have a CT scan and meeting with my radiologist to "map" my chest. They are actually going to tattoo four dots on my chest. These dots will guide them where the "rays" need to go. All of this is the ensure they are hitting the breast and chest instead of other vital organs! ie heart and lungs! It's really all rather mathematical and exact to each person. Monday a bone scan, and Wednesday a PET scan. Once all of that is done I can start my radiation. I will go five days a week for 6-7 weeks. Each appointment will take about 30 minutes. Once I complete radiation I will then start hormone therapy for two years. Most people do five but I'll go into all of that fun stuff in another post!

Ok..back to bad TV! Thanks for reading! Love you all and thank you for all of your prayers and support! 

xoxo,
Sonja

Napkin on the window

To stop or not to stop…that is the question! Anyone that lives in an urban area is use to homeless people. You actually recognize them and even know some of them by name.  However, in general, you do nothing more then smile, give a nod and go on with your day. Quietly judging and occasional taking a second to be thankful for all that you have. Yesterday was a little different. My friend Chris and I were going to have lunch. As I’m exiting the car continuing to tell him the ups and downs and waiting to find out about chemo and radiation a homeless kid on the street chimes in.  We stopped for a moment and listened to him. He was telling us about a book and how it healed him of several things.  We had a little banter and then went into the restaurant. When we finished with lunch and went back to the car we found the note below on the window. By this time the kid had walked away. I folded up the note and we left. BUT what an impression he made on me. I want to know his story! Is he homeless? Is he on drugs? Is he crazy? Was he kicked out of his house for some reason out of is control? Or is he exactly where he wants to be? I want to go back and find him, but what would I say? What would I do? Or is it just a moment of pay it forward? Regardless I appreciate the time he took to offer up his advice. I hope in some way that maybe this blog might be “my napkin on the window” for someone else.

Ok…enough of my musing onto the update. Until today the last few days have been pretty uneventful. With everything I’ve been through in the last month that is a nice change. Monday the 27th was exactly a month since my diagnosis as well as Santé’s 16th birthday! I actually felt well enough have lunch with Cindy and Kim, go to Santé’s basketball game AND have dinner!!  I was pretty much down for the count on Tuesday but it was worth it! I’m still in pain but it is getting better everyday.

Amazing gift from Gaga! Tango wants one sooo bad! haha

Today was my last post op follow up with my PS. She removed the remaining sterile strips (tape) took my “after” photos and gave me the thumbs up! Once I see my oncologist and radiologist next week I’ll have a better idea of when I start radiation and I will see her again to confirm when I’m physically ready to start. From there we moved onto the fertility doctor.  Now some of you may be wondering why a fertility doctor. Well with chemo not off the table and radiation imminent, freezing eggs is my best “insurance” incase the cancer treatments kill a lot of good cells (and fertility) as well! Which they are known to do.  So a new car or a down payment on a house in TX later I actually started today. We were just expecting a consultation but with time being of the essence I did my first injection today and I will go back tomorrow after my blood work is back for the rest of the treatment. Basically they will teach me how to give myself the injections and I will give myself two injections a day for the next 12-15 days.  Then when I’m ready it will be a quick out patient procedure to “harvest” my eggs and freeze them.  Whoopie more anesthesia and surgery. Well….if it gives me piece of mind then I’m all for it. Fingers crossed that it’s an insurance policy we will not have to cash!

So…the other important stuff!

September 5^th – Appointment with an oncologist

September 7^th – Appointment with alternative Doctor – to discuss adjunctive therapy or alternatives to chemo and hormone therapy

September 10 – appointment with my radiologist
TBD - Chemo and Radiology

Still waiting on the BRAC1 and Onco test results. Well…until then! 

Cancer free...technically!

Hello everyone! Sorry I've been a bit MIA lately. The surgery took a lot of out me and I've pretty much been down for the count. I've had some good days and some bad days but over all I would say they have been pretty good. The last two days have been eventful! So....to catch everyone up!

Yesterday we went to see the Plastic Surgeon. Everything is right on track with healing and I was able to remove the drains. Man that sucked! Basically they send you home with tubes coming out of each side that collects fluid. Everyday you have to measure and dump out the contents. Once you are below 20cc's of fluid a day they can come out! My left side probably finished about two days ago but my right finished yesterday. Perfect timing for my post op appointment! Not to go into gory details but they basically just pull the tubing out and patch you up. Um...does it hurt! Oh hell yes! I definitely let out a few expletives. As my mother says if I didn't say it all the time they wouldn't come out at inopportune times. Well...sometimes regular words just do not suffice! So she felt me up, patched me up and sent me on my way. I'm scheduled to see her again next week to remove the surgical tape. Overall I'm extremely happy with the outcome. The girls are definitely smaller but still there! Just nice and perky! Just like I wanted. It really has been a huge mental help for me to feel more like a plastic surgery patient instead of cancer patient. 

So…today was my follow up with my breast surgeon. Everything looks good with my lymph node incision. It is definitely sore and sensitive but hopefully that will go away soon. I can almost fully extend my arm above my head, which I guess is above average this soon after surgery. I’ll settle for average at this point so above average is stellar!

Ok, the important stuff…I am technically cancer free!! :) Yippee!  Surgery was just the beginning but it was a great start! The entire margin came back clean. What that means is they are confident that they were able to remove all of the cancer and a good portion of healthy tissue around the cancer. The other good news is the lymph nodes came back negative. Well kind of! The cancer did spread to A lymph node (meaning one) but they removed it. There were also a few cancer cells in the other nodes but not enough for it to be considered positive. There were a few bad notes.  Turns out the cancer was a lot worse then anticipated. I had multiple tumors malignant and benign. The three largest malignant were 3.6cm, 2.4cm, and 1.4cm.  Sounds like there was a big ol cancer party in my boob! Sorry cancer this party is over! In the words of my surgeon we really did catch everything just in time. It was on the verge of turning into a body party instead of just a boob party! These are technical terms y'all ;)

Ok,  so what does all of this mean? Good question! Now is another game of hurry up and wait. Currently we are waiting on the chemosensativity testing. Since the tumors were larger and multiple chemo therapy is not off the table yet. However, I have chosen to do an “onc” test on the tumor. This will tell us if my cancer will even respond to chemotherapy. Why do chemo if it isn’t even going to be effective! I am also waiting on a BRAC1 test, which will tell us if I have the cancer gene. The out come of both of these test will help determine my next step. So here we are again…waiting. I will see my oncologist and radiologist in the next two weeks to figure everything out. So stay tuned!

Hello from the flip side!

Well...I finally have a little bit of strength and clarity to send my own update! I see that Andre has done an amazing job of keeping you all informed and with his own flare. As you can imagine he has been amazing and words cannot express my gratitude. BUT..I’ve got the rest of my life to say thank you and he's not quiet done taking care of me just yet! As much as I wish this part of the journey were over I've still got a lot of recovery ahead. 

Right now my main focus is staying ahead of the pain so to speak. Everyone that knows me knows I have a high threshold for pain but with that comes a high tolerance for pain medicine.  Not sure why they would think if I needed iv Diladid between my Percocet pills in the hospital that just Percocet alone would work when they sent me home. Well…it’s all they gave me so all I can do is suck it up and deal with it! We figured out it was best to wake me up every four hours to take my pain meds instead of letting me sleep through it. I am happy to say last night I was able to sleep through it! Woke up in a lot of pain but I did get about 6 hours of solid sleep! Hopefully I’m finally “ahead of the pain” now and it will just get better from here.

Once again cancer just seems to be one waiting game after another. First biopsy results, then schedule surgery, now waiting for the pathology from the tumor and lymph nodes. It turns out some of my lymph nodes were actually bigger then my tumor. Not sure if that’s bad or good yet! I’m hoping it just means they were doing their job and fighting the cancer from spreading.  My surgeon asked me to check in on Monday to see if my path results were back but he figured it would probably be Tuesday or so before they had everything. Once they are back I will schedule a meeting with him and we will finally really know what the next step will be. Regardless radiation will still be on the table.

So for now we wait…and I heal! The portable air conditioner arrived yesterday! It really is a godsend! No central air during this heat wave was no bueno! Plus Andre was able to get a little aggression out by breaking the window to put the hose through. We are not officially ghetto…cardboard and masking tape and all!  Hey.. it works!!

I am slowly getting back on line and will try and respond to everyone. The love and prayers have been overwhelming and we really appreciate it.  The flowers are all holding up nicely and have brightened up the apartment! I even had enough strength to play a little Cards Again Humanity with Stephanie and Andre last night. Gotta love a man with the same sick sense of humor as me…below is Andre’s answer to one

Well, I promise to try and keep everyone updated. I’m still really weak and making it from the couch to the bathroom is a choir but everyday does get better. All I really want now is a  blowout and a proper shower! Hopefully in the next few days! However, Andre doesn’t seem to be complaining about having to give me a sponge bath.  Ha, I can’t even brush my own hair so I’ll take it! So for now i will sit back and enjoy this beautiful salad Andre just prepared for me...chicken and all!