It's international day of happiness!
It's also one year since my bilateral mastectomy, and it's about time for an update!
Much less fun than the first two, I will say ;)
Bet you weren't ready for this picture! Good times!
I can't believe it's been that long, and also that it's only been A YEAR?!
I won't lie to you. It's been a bit of an armpit.
Here's a refresher: http://brookeshowalter.blogspot.com/2018/06/one-foot-in-front-of-other.html
So, life just got really real after my surgery, and it's just stayed pretty intense the whole year since. Lots of juxtapositions that I just have to laugh at.
Christian's job has been such a blessing, but it's also been out of control busy and stressful.
Parenting little little ones while doing all this is a sweet joy and distraction, but it also kills me daily because I'm just so freaking tired.
We were SO BLESSED when I got put on the clinical trial drug back in July, and I also hate it so much because it makes me feel like death. And I still have a year and a half before I'm done
*cue tears* haha.
(There's a whole post forthcoming where I pretty much just complain about the way I feel so GET READY. It kind of feels like throw up at this point: maybe if I just get it out of my system, I will feel a little better haha. And I feel like I want to throw up all the time anyway, so if I can't REAL vomit, at least I can WORD vomit!'
I'm the funniest.
Anyways, I digress...)
The final juxtaposition in life right now is this:
About two weeks ago I had my yearly scans
(this is for this Li Fraumeni syndrome. Whether or not I currently have cancer, I will go in for scans every year, for the rest of my life. Same deal for my sweet mom. We need to sync our scans so that we can pop a Valium and make a fun mother-daughter date out of it ha!).
These were HUGE, because they were basically giving us a big picture look at how radiation worked, and also my medications, including this big clinical trial drug.
I still hesitate to even say this because I can't wrap my head around it....
My scans came back CLEAN.
My oncologist was officially able to say I am NED (no evidence of disease).And to go from where I was a year ago to this, is just kind of shocking honestly. A miracle.
The biggest thing is it just gave us the most precious blessing: TIME.
Which is what has been weighing so heavy on us since my surgery last year.
Going into these scans, this is where our heads were at:
Were we going to find out I still had some cancer in my lymph nodes, or somewhere else?
And if that was the case, what did that mean?
Would this cancer grow more and more resilient, and then spread?
Would I be metastatic within the next few years?
Or next five?
Would I have ten years to live?
More?
Less?
It's a terrible thought spiral to go down, and yet almost impossible not to.
Again, it's been a really, really hard place to be.
So. There you go!
If I seem less excited than you'd expect, it's because I'm still in shock, frankly. And have spent this entire last year with my head not even on the possibility of a clean scan.I AM excited, I totally promise!
It's just gonna take me a second to adjust ha.
I will say, my mind and anxiety feels much more at ease than they have been. Everything has felt so high pressure, like YOU MUST BE TAKING THE ABSOLUTE BEST CARE OF YOURSELF BECAUSE WHAT IF THE CANCER IS STILL AROUND SO YOU MUST EAT WELL AND SLEEP AND EXERCISE AND KALE AND CELERY JUICE AND ALSO SPEND ALL THE TIME WITH YOUR KIDS AND HUSBAND AND ENJOY LIFE AND DON'T WASTE A SINGLE MOMENT BECAUSE WHAT IF YOUR SCANS ARE BAD AND YOU DON'T HAVE LONG TO LIVE?!
How's that for an internal dialogue?! Ha!
So yeah, one shift I've definitely felt since my scans is all that mental noise has quieted down. I can just relaaaaaaax a bit. Which of course, I'm so so grateful for.
So now a little info. When a cancer patient is NED, it does not necessarily mean they are cancer free. They are careful not to use the term "cancer-free" these days actually. Because of course there may be some tiny little cancer cells left over that you just can't see.
This is where I feel so grateful that I had my ovaries removed (did you know I did that? Good times. Gotta keep the fun train going and the estrogen outta here!) and to be on medications. One will likely last for the next ten years. That can do so much for any pesky little left-over cells!
I'm super super grateful for that.
Like I said, I feel like these scans gave me the biggest and best thing: TIME.
Not a cure.Just more time (hopefully SO SOOOOO much more time!!) before things possibly get hairy again.
(Or less hairy... because, chemo. See what I did there? lololololol I can go all day!)
And I hear you! Like "Sheesh lady, you had great scans! Can't you take a break and stop complaining for a minute?!"
Well joke's on you because that ain't happening. Yet ;)
One final thing. This is taken from an article titled "Understanding No Evidence Of Disease".
"The term "no evidence of disease" (NED) is often used with cancer when there is no physical evidence of the disease on examination or imaging tests after treatment. The term means the same thing as complete remission or complete response. NED does not, however, mean that a cancer is cured, and, with most cancers, there is a chance that the cancer could recur or relapse at a later date. Certainly, being NED, as the term is often used, is very positive, and means that the treatments used were effective, if not just temporarily. Since the recurrence of cancer, and metastases, are responsible for the majority of cancer deaths, there is currently a lot of research focusing on how to keep a cancer NED.
It's important to note that people with cancer who are NED need tremendous support. Not only do many people who have achieved a complete remission need to cope with the fear of recurrence and "survivor guilt," but late effects of cancer treatment can sometimes significantly reduce quality of life."
Those late effects of cancer treatment reducing quality of life is EXACTLY where I'm at right now. Hence the forthcoming post that's basically just about how garbage I feel haha. You've been warned.
So. I feel crappy, but I also feel so so so so grateful.
The line from the Jack's Mannequin song has just kept going through my head,
(Fitting, since my boy Andrew is himself a cancer fighter and survivor)
