July 4, 2023

I honestly don’t even know where to start this blog, or how to present the content in the light that I truly want to highlight it as, however, I’m going to do my best and pray that the message is well received in the way that I would like for it to be received.  I’ve had a tough week, and isn’t that when I decide I have something to say to the masses?  And when I say that I’ve had a tough week I don’t mean that it’s just been one incident that has made it hard for me, it’s truly been a cumulation of a bunch of things that have been going on in my life that had finally hit it’s peak which has just become unbearable for me to pretend for one more moment that things are okay. 

I don’t want you all to be worried about me, I’m not standing on the edge and getting ready to hop off into the abyss, but I will say there are moments, days, and sometimes weeks that I truly feel like I can’t breathe and it’s hard for me to explain it to others without seeming crazy, which is always fun. 

One of the biggest things that I struggle with, and that I hate the most about being on the other side of my cancer journey, is that others see me now with my hair growing back, my eyebrows and eye lashes growing back, and they think that I am “better” or in “remission” which couldn’t honestly be farther from the truth.  I struggle now when I share with someone that I was diagnosed with Triple Negative Invasive Ductile Carcinoma Breast cancer in October of 2021, because usually the first thing they say is, “So you’re in remission now?  You look so good.”  To which I often reply, “Well, the reality is the chances of reoccurrence for the cancer I was diagnosed with is highest in the first 3 to 5 years, so I like to say that I am hopefully optimistic” . . .

Think about that for a moment.

I mean truly think about that.

What if this was you?  Would you feel better?  Would you feel like there was nothing to worry about anymore?  I’m sure you would not and let me take it a step further.  There are so many crazy side-effects, for lack of a better word, which you carry around with you from the treatment that saved your life.  Let me share some that I have since having treatment.

Chemotherapy threw me immediately into menopause – like immediately, that very freaking day.  So the pre-menopausal symptoms that I was having going into diagnosis turned from bad to worse overnight.  The hot flashes that occur all the time with no warning, having to sleep at night with a fan blowing on me at full blast (poor Mano), the unexplainable weight gain no matter how much I walk, the menopausal and chemo-brain which is the worst when you struggle to come up with words – and not big fancy words, simple stupid words, words that you know that you know but for the life of you can’t think of or come up with which happens all the time.  At home, at work, out with friends, etc.  It’s so frustrating, but that is still only part of it.  I struggle to read and comprehend the words that I read, which is so frustrating since reading was always one of my guilty pleasures.  Current state, Audible is more my friend.  Having someone read to me is often a better path than trying to read for myself, oh and lists.  I have never in my life made so many lists.  I have always prided myself of being able to keep things organized and sorted in my head and in the past, that was the case, current state, if you’re not on the list all I can say is I’m sorry.  My calendar is my best friend, it keeps me on track, and it allows me to keep Mano on track, see we are truly a mess, between my “Chemo-brain” and his “TBI “Traumatic Brain Injury” it’s lucky that we are able to get anything done in a day. I will talk more about his TBI in a little bit and what that means.

Radiation has had its own bucket of things that the treatment left for me, and I’d like to share that the doctor’s don’t tell you about any of these possibilities when you are considering treatment, but afterwards, when you visit and say, “Hey Dr. So-and-So it’s going to sound crazy but my breast feels like a chicken cutlet, it’s like it doesn’t even feel real” or “like it’s a part of me anymore”, or when you say “I’m having burning sensations some moments that don’t last long, and then other times it’s itchy, or hot, or cold, or a variety of all the above” and they say, “Oh yeah, those things can happen, don’t worry that is just the nerves regenerating themselves” and some of the numbness or hyper-sensitivity” may go away, but then again, it may not but give it time, it’s only been a year, or, unfortunately, it may never go away.  We will just have to wait and see what happens” and then there are the other things as a result of surgery.

Surgery has its own list of things that I still suffer from such as lymphoedema in my right arm, my collar bone area and my little pocket of fluid that pools underneath my arm.  So, I see another doctor for this, or rather an amazing physical therapist who is helping me deal with this and the cording in my right arm that I developed and presents itself as a very hard linear lymphatic drain that runs from my right arm pit down through my elbow and into my forearm.  The reason they call it cording is because it’s hard like a guitar cord and in worse case scenarios it can impact you being able to lift your arm.  I was so afraid that my cancer had come back that I suffered for two weeks before googling arm pain from breast surgery and finally figured out what it was. 

And last, but certainly not least, is trying to move forward in your life as the person you are after you have gone through all this, putting a smile on your face on days that the struggle is real.  Learning to work again but knowing that you need to take more breaks, to read emails three or four times before sending, taking copious notes, and filling copious notebooks in hopes of not forgetting anything.  Learning to live with yourself again.  Learning to try not to panic when you have an ache that lasts more than a day or so. Learning accommodations to help yourself without sharing with others that you are struggling inside.  Learning to take it easy on the days that you are tired for no reason, learning to live with the hot flashes, chicken cutlet breast, cording flareups, headaches out of the blue, unexplained burning sensations, itching, etc. Learning, each day learning that this is your new normal, your new life. 

Breathe, just breathe –

For the record, Mano and I have learned that we both need lists to accomplish anything in our lives, without them we would both be lost.  When we were first married, pre-cancer diagnosis for me, I couldn’t figure out why I could give Mano a list of 3 items to grab at the grocery store and he’d call me at least 3 times to “remind him” of what he was suppose to be getting, and then, he was officially diagnosed with his TBI and we spoke with an amazing person who helped us to understand the need for lists, the need for pauses, the need for direct eye contact and full attention when talking about items – especially important items and then I was diagnosed with cancer and after chemotherapy I realized that I was losing stuff all the time, and as Mano likes to say “You must have put it someplace so you won’t forgot where you put it”.  I also realized that I was having a hard time comprehending what I had read if I read a book.  I remember reading a book and 30 minutes later having no remembrance of what I had just read.  I realized that If I didn’t write it down on a list it wouldn’t get done and for the first time, I realized what my husband has gone through for years.  It finally made sense.  We are quite the pair. 

Please know that not all handicaps can be seen.  Please know that once you’ve gone through a major trauma in your life, whether it’s cancer, or being knocked out by a jet like my husband was in the military which caused his TBI, please know that you are never better.  Please know that not all handicaps can be seen, some are not visual to the human eye, some illnesses such as ADHD, OCD, Depression, Autism, Bi-polar or Schizophrenia, and so much more.  When you are around someone that you KNOW has one of these things, please be sensitive to what they are going through or dealing with, some days it may seem like all is okay, but there are other days that the struggle is real, there are some days that just making it through the day is the only thing we could accomplish.

And please, if you know someone who has been through a cancer diagnosis and had to navigate treatment similar or different than mine, instead of saying, so you’re better now when they are on the other side. Please just ask how they are doing?  How are they feeling?  Ask if there is anything they are struggling with?  You don’t have to relate, you don’t have to pretend to understand, but you certainly can just show your support by being willing to listen.  After all, isn’t that all any of us want?  Is to be heard and validated?  I will get off my soapbox now, I hope that this gives you insight on what to do going forward. 

Xo,

Tracy