Another Step Closer: The Latest Update

If you're not caught up with my story, click HERE to read all about it.

Thursday I received the results of my genetic test.  Long story short, I don't carry the genes which would make Breast Cancer likely to occur again.  I will be having a Lumpectomy with a Sentinel Lymph Node Biopsy.  Along with taking the mass out of my right breast, a few of the lymph nodes in my right armpit will also be removed.  The mass and lymph nodes will be looked at by pathology to help determine if the cancer has metastasized, or spread, to other parts of my body.  This will determine which type of cancer treatment I will need:  radiation or chemotherapy.

I was hoping that my surgery could wait until mid April when I would have Spring break.  After talking with my doctor today, she feels that I shouldn't wait that long.  When I asked her when I should have the surgery, she said, "How about next Thursday?"  My mind started spinning.  Today is February 28th.  I will be having surgery next Thursday, March 10th!  I didn't think it would be that quick.  I'm really happy that I've already started buying the things that I will need!  

I have been watching A LOT of videos on YouTube all about the surgery I'm going to have, and breast cancer in general.  You can actually find videos of an actual Lumpectomy.  I've never watched a video of a surgery I was going to have prior to the actual surgery.  I watched one the other day.  I couldn't finish the video....it was just nasty, and made me squirm!  I don't recommend watching videos of surgeries you're going to have; wait until they're done!

I've read that sleeping can be a problem for a while.  Laying flat is discouraged, for obvious reasons.  Luckily, not only do we have a reclining couch, but a bed that is adjustable.  Thanks to these, I won't need to purchase a "wedge" type bed pillow.  Saving money is always great, especially when you see all the other things I will need!

In my research I have read that they make pillows to be used during a Lumpectomy recovery.  Keeping my arm separated from my side will be important, and I will need extra support since my armpit will also be in pain.  These pillows are made to help aide this process.  They have a pocket in the front where you can put an ice pack, and there is an adjustable strap on the pillow to help keep it in place.  I have already purchased the pillow on the left.  Not only will it be used in the house, but it will help definitely provide cushion from the seatbelt whenever I'm in the car; especially on the ride home.

  

I will not be able to move my right arm very well for a while, so the clothing I wear will need to be different.  During recovery, a very soft, but supportive front closing bra is the only way to go.  For the first 7 - 10 days, I will need to wear a bra 24/7...yuck.  Through my research I have found a company that makes bras specifically for this purpose.  The company is called anaono and they have many garments to choose from.  

Another article of clothing I will need is a lot of button down shirts.  I won't be able to lift my arm up and over my head, especially if I have a drain attached, so shirts like these will be crucial for my recovery and comfort.  I never thought that finding casual button down shirts would be difficult, but it has been quite a challenge!  I've found that pajama tops are the only shirts that are both button up and casual enough that I won't mind getting them dirty.

I'm now busy making substitute lesson plans, and getting all of my grading completed.  The week I come back will be the last week of the quarter, so getting grades ready will be the focus.  

I'm very nervous, but I've been nervous before every surgery.  Let the main part of the marathon begin...

The Waiting Game

😂😂😂😂😂😂

The worst part about this process (so far) is that I can't plan ahead.  As I've said before, I am a planner, and getting to the actual surgery and treatment is a step by step process.  I had my genetic test done Tuesday.  It has to be sent off to a lab somewhere in the United States and it will take 7 - 12 BUSINESS DAYS to get the results back!!!  The results of this test will tell us which surgery I need:  a lumpectomy or a mastectomy.  I will then most likely have to wait for another appointment with my surgeon before a surgery date is even scheduled.  12 business days from today is March 4th.  

I am hoping that I only need a lumpectomy.  This means the surgeon will simply take out the mass, along with a few lymph nodes from under my arm pit, move tissue around in my breast to try and make it look "normal" again, and then close me up.  That surgery would only take about 10 days to recover from.  

A mastectomy would be discussed if the cancer is likely to come back, even after treatment.  It would also require an appointment with a plastic surgeon so they could determine how much reconstructive surgery would be needed.  Since this would be removing my entire breast, I've been told it's a 4 - 6 WEEK recovery.  The thought of a mastectomy scares me to death.  

Last night I was talking to Nick about all this, and it dawned on me that when you hear the phrase BREAST CANCER, many immediately freak out, just like I did.  Why is this?  Well, I think in a lot of ways we've been taught to freak out about cancer.  Television, movies, YouTube, and articles all add to the fear.  You hear the most about the worst cases of breast cancer. 

Some cancers, like the brain cancer that killed my mom are very serious and are an emergency. And there are some who are diagnosed with breast cancer whose cases are far worse than mine.  As we wait for all of this to play out, I am beginning to realize how much this is not really an emergency for me.  After being told I have cancer, I had to wait a week to see my surgeon and find out about the genetic test.  I had to wait another week to have a zoom call with the genetic doctor before I could even have the test done.  If my case was an emergency, you'd think that this first part would be moving A LOT FASTER, and that this genetic test wouldn't take up to 12 days to come back!  

I bring this up because I've been trying not to freak out about the surgery and treatment process.  I have a life outside of cancer, and I'm not going to let this run my life.  Brandon starts baseball in March.  I will need to get him to practice and go to his games.  He currently plays basketball and I take him to those games.  I only have a few PTO days left this year at work.  This affects those I work with, and my ability to continue bringing money into our family so that we can continue to pay bills.  The longer I can go before surgery, the better.  Surgery probably wouldn't have been scheduled until mid to late March anyway.  This surgery can wait until the middle of April when I have spring break.  By then there will only be a few weeks left in the school year, and I won't have to worry as much about that.  I won't be able to start treatment until after I've healed, so that will give me all summer to deal with this crap.  I can be sick, lose my hair, all of it.  Brandon's baseball will be over, and with the exception of a New Kids on the Block concert in the beginning of June which I WILL NOT MISS, I have no summer plans!

It's Starting to Get Real

Saturday was the first time I was able to feel the lump in my breast.  If I had thought to check earlier, I would've discovered it prior to last week.  It started to sink in a little more when that happened.  Over the weekend as people read my blog, I began to receive a lot of supportive comments from friends and family.  My appointment with the surgeon was scheduled for today (Tuesday).  Over the weekend I spent a few hours watching videos about cancer and chemotherapy, and I was able to compile a list of questions that I needed to ask the surgeon.  It became a waiting game.  And it was a LONG 5 days.

Heading to my appointment this afternoon, my nerves were getting the best of me, and I was emotional.  My surgeon is fantastic.  She took over an hour with us, explaining everything, drawing pictures, and writing down the "dumbed down" definitions to all of these new words and phrases we're being bombarded with.  

I'm going to be VERY BLUNT with my descriptions, and just lay it all out there.  I see this as a way to bring awareness and knowledge to other people about breast cancer, much like my blog posts regarding my seizure disorder and surgeries have done.  So here is the "dumbed down" news from today:

I have a benign mass in my left breast that measures 1.3 centimeters.  This will not be removed right now.  I will have mammograms every 6 months to make sure it isn't growing.  After two years, if it still hasn't become cancerous, it most likely won't.  I can choose to have it removed at any time, which I will probably do in the future.  I'd rather have it gone and not have to worry about it.

I have a cancerous mass in my right breast that measures 3.4 x 2.6 x 2.6 centimeters.  It needs to be removed.  My surgeon has said that I need to have the surgery done in the next 6 - 8 weeks, so this is not a DO IT NOW situation, which is wonderful.  

There are quite a few steps that need to be taken BEFORE I have surgery.  First, I will meet with a genetic counselor for more testing.  Doctors need to know if my genes show that the cancer is likely to return.  This will determine which type of surgery I have.  It takes about 5 business days to receive the results from this test.  If testing shows the cancer will return, I'll need a mastectomy.  The idea of that scares me to death.  If the cancer is not likely to return, I will have what they call "breast conservation" surgery.  This includes a lumpectomy and oncoplastic reduction, where the fatty tissue in my breast will be moved around to help fill in the hole being left behind, along with removing any excess skin.  A Sentinel Lymph Node Biopsy will also be done during surgery where they will harvest a few lymph nodes from my arm pit to make sure the cancer hasn't metastasized.  

The mass and lymph nodes will then be taken to pathology where it will take 7 - 10 BUSINESS DAYS to determine whether or not I will need chemotherapy.  THAT will be a VERY LONG WAIT while I recover from surgery.  The lumpectomy surgery will take about 10 days to recover from.  A mastectomy will take about four weeks to recover from.  I will need radiation either way.  Radiation is given 5 days a week, for only 20 minutes.  How many weeks the treatment will last can't be determined until after surgery.  The surgeon said it makes some people very tired, but it is different for everyone.  It would be FANTASTIC if I only had to do radiation.  Chemotherapy takes MUCH longer, and breaks down your body, making it difficult to do ANYTHING.

Once the surgeries and treatments are completed, I can decide if I would like reconstruction surgery done on my left breast, helping to create symmetry once again.  That would be the best time to also have the benign mass removed.  

So I'm once again in a holding pattern.  This truly is a "one step at a time" process, which is so frustrating.  I won't know WHAT surgery I can have until the genetic counseling information comes back.  I won't know WHEN I can have surgery until the counseling comes back.  I won't know HOW LONG I'll need radiation until after the surgery.  I won't know IF I'll need chemotherapy until after the surgery.  This many unknowns would make anyone crazy.  It makes me want to SCREAM!

I REALLY don't like the color PINK.  In fact, I HATE the color PINK!  The "official" color for all things breast cancer related.....is PINK!  Figures.  Guess I'll have to get used to it.  I'll keep you all posted.

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?!?