August 7, 2022

Christian and I enjoying theater again!!!

Happy Sunday Funday y’all.  I hope that everyone is having a wonderful Sunday and hopefully doing something fun.  Christian and I went to see Mean Girls at the Bass Concert Hall this afternoon.  It was a great show for anyone who hasn’t seen it.  It was cute and worth going to see.  For me, it was just nice to be able to be in a theater again to see a show.  I missed so many shows in the past year due to low white blood cell counts, fatigue, and other things related to chemo/radiation/cancer.  

I am grateful that my white blood cell counts are staying up with the oral chemo and not really causing problems (knock on wood).  I am still experiencing headaches, daily, however as I’ve said before, if that is the only side-effect/symptom that I experience then I am calling this a win.  It could be so much worse. (PRAISES)!

I’ve been thinking about this post a lot and I’m ready to share the stuff that “they” the doctors don’t tell you when taking this journey.  I have spoken to others who have walked this walk and we’ve all had the same experience.  There is much that the doctors do tell you, however, there are many things they don’t.  I hope that this provides some much-needed information to someone else following behind me.  Most of what I am sharing are experiences that I’ve had since my surgery.  There is a lot of information on what to expect when doing the different types of chemotherapy drugs but not much on what to expect after surgery.  So here goes:

• After my surgery some of the things that have bothered me the most have been the crazy pain and sensations that you begin to experience in your breast.   The pain and sensations range from shooting (nerve) pains, sudden burning, itching, and sometimes just unexplainable irritation and pain.  I can tell you that none of my doctors warned me on what to expect when the nerves start “waking” up, however, once these pains and sensations started and I went back for my follow-up visits all doctors acknowledged that “it’s normal” to feel what you are feeling,  SERIOUSLY???  WHY DIDN’T YOU TELL ME ABOUT THIS BEFORE??? Sheesh…..  In fact, as I write this blog for the past week I’ve had phantom pains (again) that are shooting through my affected breast.  Good times y’all – good times.
• After radiation, I had areas that felt like they were on fire, especially where they did the “booster”.  Often that little spot was red, hot, and felt, most of the time, like it was on fire.  It becomes super irritated which made it difficult to wear any type of undergarments.  My doctor was kind enough to give me Mepilex (link here) foam dressing to put over my very irritated skin.  It basically forms a barrier between your skin and clothing to prevent any further irritation due to friction between the material and your body,  TRUST ME when I say this stuff is LIFE CHANGING when you’re in this phase of treatment.
• The doctors also never explained to me that sleeping may be a challenge for a long, long time.  For me, there is so much pain when I sleep, mainly because I am a side sleeper which is NOT a good position post-surgery.  Even though I think my surgeon did a wonderful job, I can tell you that nothing and I mean NOTHING about my chest feels “normal” and from what I hear from others further down the road than me – that it will never feel normal again.  See, this is what I mean, no one tells you this when you are racking your brain to “make a decision” on what surgery is right for you.  More good times. 
• I can tell you this, once you’ve had your reconstruction surgery, whatever that is, you will never wear a normal bra again, and trust me, you won’t want to but you will learn to love a couple of really nice bralettes or sports bras usually the tighter the better, which is SO different than before surgery.  You will not want the girls doing any kind of jiggling on their own.  NEVER.  AGAIN.  In some ways, you may even have a bit of PTSD when it comes to your breasts.  It’s just crazy!!  
• Then there are other side effects that aren’t directly related to surgery but are related to all the different treatments you go through.  Most of these are mysterious fatigue (not every day just random days), headaches, achy joints, tingling and numbness in your fingertips and toes, missing fingerprints, lifting or loss of your fingernails or toenails, dry skin, dry eyes, etc.  Some of which I still deal with every day,
• Menopause as if it’s not bad enough, most of these drugs throw you immediately into Menopause which means you get all the wonderful symptoms of that – hot flashes, weight gain, insomnia, loss of libido, etc. Trust me this list is endless also.
• Chemo brain or brain fog – is a REAL thing and it’s incredibly frustrating.  You will suddenly not remember names, places, facts, and things that you have known your WHOLE life.   You will have trouble putting some words together somedays.  This is one of the reasons why my new pastime while “relaxing” in the evening is playing some sort of word game to keep my mind sharp.  Hopefully, it will help.
• Sex – no one wants to talk about sex, but I am going to be brave and talk about this today.  Sex is something that during the journey is a lost pleasure, but you can/will find other ways of intimacy with your partner.  There is such a stigma around this topic which is crazy because it’s something so important and yet something that no one wants to talk about.  (Honestly, I should write a whole blog about this topic).  As we all know sex is as much (if not more) a mental process as much as a physical process which means it’s very hard to think/feel sexy once you’ve gone through all the medical parts of this journey, not to mention no longer feeling as if you have any modestly left since your breast has been on parade for months with every nurse, physicians assistance, doctor, etc. south of the Mason Dixon Line.  The body shaming that happens to breast cancer survivors is HUGE!  Often the body shaming is from yourself.  Physically, clearly, you will not look or feel the same ever again.  Mentally it’s common for many survivors to really struggle with how they look/feel about themselves.  Sadly, it’s also common for many couples to get divorced during this time. That really breaks my heart, but it happens.

I’m sure you’re wondering why I’ve chosen to share all of this with y’all… first and the most obvious reason is that I promised myself from the very beginning that I wanted to be a voice to share with others all the good, the bad and the ugly of this journey in hopes that it would help someone else coming along behind me in their journey.  One of the other reasons that I wanted to share this today is that it’s important to remember that not all scars can be seen and I don’t mean that literal sense.  What I am trying to share with all of you is that even though chemotherapy, surgery, and radiation are done, there are still scars.  There are still moments where the emotions of sadness, confusion, hurt, and pain is so great that they often can be overwhelming.  Additionally, there are also moments of love, gratitude, happiness, and comfort.  It’s hard to know some days what emotions will come through or even how hard the person going through this is struggling, so in closing, I want to say to you the following:

• Be patient – healing physically and mentally takes time and not everyone’s timeline is the same.  Some of us may bounce back quickly, for others, it may take years and for some, they may never (completely) be the same.
• Be kind – make sure to be kind with your words.  All of this journey is hard.  All. Of. It.  There is not one part of this that is easy or easier than another part of it.  It all takes quite a bit of energy (mental and physical) to get through it.
• Be aware – be aware that we are doing the best we can and some days whatever it is we are doing is all we can do.  Just be aware and know that we know when we are not at 100% and if we let you down that day, it’s not intentional.  Promise just know that we may be doing the best we can that day.
• Be the same to us – love us through all of this.  Often the brave face we are wearing is more for you than for us.  Treat us the same as you did prior to our diagnosis – we are the same person inside even though our outside appearance may be different.

I hope that his post gives you all some insight into the struggles that are real for the cancer patient who is on this journey.  I hope that it will help you to understand us (and yourself) a little better.  I am thankful that God continues to bless my journey by protecting my body from side effects and by allowing me to begin the healing process – mentally and physically,  I am most thankful for God giving me the courage, the platform, and the voice to speak out so that others may benefit down the road.  (PRAISES for his provisions and protection).

Mean Girls with my handsome date

I hope you all have a truly wonderful week.  Thank you all for your continued love and support.  You will never know how much your emails, cards, text messages, letters, etc. mean to me.  I hope you enjoy some of Christian and my photos from today.

Xo,

Tracy 

Me and my handsome date