You've Got to be KIDDING Me!!

Well, it's been quite a while since I've updated my blog.  

Since my last post, my mom passed away on October 18, 2020 from Glioblastoma, which is a fatal, and VERY aggressive form of brain cancer.  It only took 38 days from her diagnosis for this HORRIBLE disease to kill her.  38 days...38 days.  My sister and I had to watch as my mom lost control of her mind, body, and all of her faculties.  She no longer knew who any of us were, which was one of the hardest parts for me.  I think deep down she knew who I was, but I never heard her say my actual name again.  She always referred to me as "my sister, Barbara".  We joked about it since my mom actually does have a sister named Barbara, but it still stung.  The last compliment she gave me was about a new shirt I was wearing.  I will never get rid of that shirt...ever.  It's probably the last coherent thought I shared with her.  As someone who has dealt with brain issues for over 20 years, it never ceases to amaze me just how important the brain is, and how much it can completely ruin your life when it's not working correctly.  Mom was my Shirley McClaine from the movie Terms of Endearment.  I have A LOT of health problems, and she was always the person who was my advocate.  Life punched us all in the gut when this happened.  We miss her every single day.

If you're not aware of my health history, click here to catch up on it.  Apparently dealing with a seizure disorder, vestibular migraines, horrible dizziness, and laryngospasm, where my throat will suddenly close, temporarily cutting off the ability to breathe and making me fear that I'm going to die due to lack of oxygen, just wasn't enough for my body to deal with.  I've now been presented with another health challenge.

January 18th I had my first mammogram ever in a mobile unit that my insurance company provides.  For of those of you who have never had a mammogram, they are not a pleasant experience.  Between 5 and 10 pounds of pressure are placed on each breast while they are squeezed into different positions.  You then have to hold your breath and stand still while the images are taken, all while you're being squeezed.  Having a VNS device inside the upper part of my left chest made getting the images of that side even more fun!  It felt like the device was being pulled down my chest. The only male equivalent I can come up with is imagining what it would feel like if your penis was being smashed between two pieces of metal!

I was told at the time that since it was my first mammogram, I would probably be asked to go to the main center to have more detailed images taken so that doctors would know what my baseline is for the future.  Sure enough, I was asked to do that.  I believe that if you are having your first mammogram, you shouldn't be told to use the mobile unit when they know they'll need more involved images.

This past Monday, January 31st, I went to the main center to have these detailed images taken.  After the initial set of pictures, I was asked to sit in a room and wait to find out if any additional images were needed.  The room had no clock, no magazines, and we weren't allowed to have our cell phones with us.  Needless to say, it was a long 20 minutes.  It's already an uncomfortable and nerve racking experience.  Maybe provide something to help distract the patients!

The tech came back and let me know that additional images were indeed needed, so I went and did them.  The lady then told me that I may need to have ultrasounds done.  It was at this point that my spidy senses began to tingle, and I knew something was wrong.  As I was being led back to "the room with no distractions", I asked the tech if this was bad, and she simply said, "Well, let's just wait and see".  That wasn't very consoling and basically confirmed my fear.  I sat in the room waiting another 20 minutes and was then brought back to have ultrasounds of both breasts done.  It was all I could do to keep myself from breaking down and crying during the procedure.

Once that was finished, I stayed in the room and waited while the doctor looked at the ultrasounds somewhere else.  When the tech came back into the room, I said, "If I'm about to get bad news, I would like you to bring my husband in.  He's in the waiting room".  When she left to go and get him, I completely lost it.  My first mammogram, and I was about to be told that I have cancer.  

I have what looks like a small, benign mass on my left breast, and a larger mass on my right breast that the doctor is certain is cancer.  I have breast cancer.  I was able to have biopsies of each breast done a few minutes later.  Apparently that's not normal.  They usually make you come back on another day, so I suppose that's a good thing.  If there can be any silver lining here.  

The biopsy was quite the experience.  After sterilizing the breast, it is numbed.  I was able to watch the screen while a needle was put into each each breast multiple times while tissue samples were taken.  From what I could tell, they had to go about 7 centimeters in, which wasn't fun.  A "chip" the size of a gnat was punched into the breast to help ensure doctor's are as accurate as possible when the time comes to take the masses out.  It was fascinating and scary all at the same time.  I've joked for years that after the VNS and RNS devices were implanted I'm practically bionic.  This only adds to it!

Once we left, I completely broke down in the car.  Cancer.  CANCER.  YOU'VE GOT TO BE KIDDING ME!  I screamed in the car, and thankfully Nick just let me get it all out.  When we got home, he and Brandon went to run some errands and I screamed and cried more.  I already have PLENTY of health problems that I deal with on a daily basis.  DO I REALLY NEED ANOTHER ONE?

I wasn't able to sleep Monday night.  I was in pain after my biopsy and my brain just wouldn't shut off.  Brandon will be 15 next month.  I have a son to raise.  Loosing my mom when I was 41 was hard enough.  There's NO WAY I'm going anywhere.  We just bought a house.  I need to be able to keep a job.  All I ever hear about cancer is chemotherapy, people loosing their hair, and not being able to do much due to the side effects of chemotherapy.  I've fought through SO MANY HEALTH PROBLEMS to make it this far, and I'm just so tired of it.  I worry that this might just be what breaks me.

I was told that it would take 1 - 3 days to get the results back.  It became a waiting game.  The next day I received a call to set up a breast MRI.  The RNS device inside my brain has to be turned off for me to be able to participate in another MRI.  When my migraine doctor wanted to do it, I said OVER MY DEAD BODY.  It's finally doing its job, significantly reducing my seizures.  Turning it off was NOT an option.  Now I'm a little more willing.  This is more important.  What kills me is that those who do the MRI's have to get the serial number of my RNS device and "research" whether or not it can be done...whatever THAT means.  I told them all they needed to do was call my neurologist and she could quickly give them all the information that was needed.  Apparently another person has to do all of the "research" and it could take a while.  This is BREAST CANCER.  Suddenly we can drag our feet?  Seriously?  They have appointments available this week.  I'm taking the rest of this week off of work to mentally deal with this.  NOW IS THE TIME TO GET MY TESTS DONE!  I have a life to get back to.  I need to know what my prognosis is.  My boss needs to know.  This has the potential to completely change not only my life, but the lives of everyone in it.  I learned from my mom that the squeaky wheel gets the grease, so I emailed my neurologist informing her what was happening and asked if she could simply call these people and give them the information they need so that we can get this moving.  

I decided not to do any research.  I looked at what a lumpectomy is, and what the recovery time is.  No matter the results, I know that at the least I'll have another surgery to deal with.  Fun, fun.  Freaking myself out by doing any research when I didn't know exactly what I was facing didn't seem like a good idea.  Taking this step by step sounded like the best move.  

Today (Wednesday), this didn't seem real.  The pain from the biopsy wasn't nearly as bad, and I had slept really well Tuesday night.  I knew that this wouldn't seem real again until I received the results and was told what the prognosis and next steps would be.  I finally received the call from the radiologist around 4PM.  The mass on my left breast is benign, which is what he originally suspected.  I have the most common type of breast cancer in my right breast:  Invasive Ductal Carcinoma.  It is considered a grade 2 out of 3.  It's not aggressive.  The stage the cancer is in won't be determined until after the surgery when a pathologist can get a better look at it.  I also found out that a chest MRI was deemed unsafe due to my "bionic body".  I am COMPLETELY okay with that.  They have plenty of detailed images to proceed. 

After the phone call I decided to start researching.  The biggest thing I've discovered is that breast cancer is a marathon.  It's not just surgery and done.  I won't know what kind of post surgery treatment I'll need until after the surgery is completed.  Many  things factor into whether I will just need hormonal therapy, radiation, or chemotherapy.  I am a very organized person.  I don't like "winging it".  I want to know what to expect and what the next step is now.  I don't get to know that in this situation....and I don't like it at all.  I am learning all the questions I need to ask the surgeon so that I can be as educated about this as possible.  My mom worked for a cancer center for many years.  This would be when I would be asking her all about this.  Since I can't, YouTube is teaching me.  

I'm not scared about the surgery.  I've had a TON of surgeries in my life because of my seizure disorder.  I'm scared about the recovery process and what treatment will be needed.  The thought of Chemotherapy scares me to death.  I'm scared about how it will affect my job and the life of those around me.  There are so many unknowns.  I know EXACTLY what to expect with my VNS and RNS surgeries.  I'm worried about how I'll look and if it will be obvious.  With my other surgeries, you would never know by looking at me that I've had any.  I fear this will be different.

Tomorrow morning I'll schedule the consultation with my surgeon and we'll go from there.  In the end, all I can do is what I've always done:

Looks like I now get to be an advocate for not only the month of November, but now October, too!  Can we stop at those two months now?!?