Five Years NED

(Look at me, doing a post that isn't just a kid's birthday post!)

Today is a big day for me.

Today, I am 5 years post-active-treatment.  It's been 5 years since I was declared "NED."  

NED, for those not in the breast cancer world, stands for "No Evidence of Disease."  When you have breast cancer, the word "remission" isn't really used.  The chance of recurrence is so high that, instead, you're told that there is "No Evidence of Disease," with the world "currently" implied.

Most breast cancer statistics are defined by the 5 year and 10 year marks, so reaching the 5 year mark means you're now included in the "long-term" survival statistics.  In reality, each year you survive after active treatment, your survival rate goes up & risk of recurrence goes down, but 5 years feels big.  It feels important.  

Active treatment is different for everyone, but for me, it included nearly 6 months of chemotherapy, a double mastectomy, and 6 weeks of daily radiation.  It's called active treatment because most breast cancer patients also have years of treatment after that initial year or so.  Those following years, in my case, have involved:

• a few years of monthly shots, followed by 
• a bilateral salingo-oopherectomy (removal of ovaries and fallopian tubes)
• daily pills (with another 5 years to go on those)
• bi-weekly myofascial release appointments to deal with radiation and chemo-caused tissue and muscle issues
• yearly follow-up scans for bone loss and arthritis, caused by the daily pills
• an infusion every couple of years to treat the bone loss
• appointments to deal with chemo-induced rheumatoid arthritis
• daily pills for an under-performing thyroid caused by chemo 
• a whole host of other side effects - massive weight gain, daily pain, continued tenderness from the drains placement after surgery, changes in my hair, skin, and nails, continued brain fog/chemo brain, changes in my eyesight, complete loss of previous energy & stamina (causing trips to the hospital if I overdo things)
• early menopause - first caused by the chemo, then the shots, then the oopherectomy.  And that comes with its own side effects!

All of that being said, I would so much rather be here than not be here.  

I am one of the lucky ones.  So many women have it so, so much worse.  I made it through active treatment, I'm dealing with the rest of it, and I have an amazing support system in my husband, kids, family, and friends.

Cheers to 5 years NED!

1 week before starting chemo

port placement, pre-chemo

first chemo, icing hands and feet to prevent neuropathy

toward the beginning of chemo, with one of my kitty therapists

mid-chemo

further into chemo, losing my eyebrows & lashes

the incredible quilt my entire family decorated for me

toward the end of chemo, with brows & lashes gone

celebrating a day when I did my makeup and created eyebrows

final chemo!

prepping for my double mastectomy

flat and still bald

mapping for radiation (not pictured-my five permanent radiation tattoos)

first radiation, wearing a robe gifted from a friend

final radiation - end of active treatment!

starting to have a decent amount of hair, pictured with my other kitty therapist

a family trip to Universal to celebrate the end of active treatment!

1 year post-active treatment, learning to deal with curly hair

this morning, quick selfie 

Thank you to my family, especially, for the incredible support.  I wouldn't have made it through the year of treatment and the 5 years since without you. 

Miles at Age 14

To read about Miles at age 13, click here.

1. Describe yourself.  "Funny, try to make people laugh.  Try not to make people annoyed with me and stuff.  I think that's it."  

2. What are you thankful for?  "Family, friends, hmm.  Like, food and water and necessary things that we've been provided.  And, of course, cats."

3. What makes you happy?  "Funny jokes, cats, dogs, lots of animals, Dad, family friends, hoodies, new electronics, Rubik's Cubes..."    

4. What makes you sad or angry?  "Umm... when people interrupt me or when I'm trying to explain myself and someone thinks they know what I'm going to say.  And even when they do, it's not nice to say it while I'm trying to speak.  At least let me finish." 

5. What do you want to be when you grow up?  "A drummer.  Whether that's a percussionist, percussion teacher, drummer in a band..."    

6. What's important to you?  "Hmm.  Well, family, friends, people that I care about."      

7. What do you love most about yourself?  "I like that I'm always willing to try new things."  

8. What do you love most about your mom?  "What I love most about my mom is her willingness to help people."   

9. What do you love most about your dad?  "That he takes care of the family a lot and makes me laugh."  

10. If you could go anywhere, where would you want to go?   "Probably, like, a place with a nice beach because we're going to Europe for Christmas, so maybe, like, some place in, like, Hawaii, or some place on the coast with seafood."

11. Who do you admire, and why?  "I admire my parents because they're good role models and get me to try new things."  

12. What do you want to learn more about?   "More percussion.  Um, I'd like to learn like a bunch in school this year so I have less classes in high school."

13. What's something you'd like to do to help someone else?  "Hmm.  Give money to people that need food, or whatever they need."

14. What are you afraid of?   "Hm.  I don't know.  Hm.  I guess the fear of being misunderstood or not knowing the answer to something." 

15. If you could only keep one thing, what would you keep?   "Family."

16. What's your favorite memory?   "Um... Probably going up to Grandma's house with the Isoms recently.  That was fun.  Or like Orlando, FL, which was awesome."

17. What are you proud of yourself for?  "My willingness to do new things."  

18. What are you looking forward to?  "Being in the drumline.  And the new laptop."  

19. What do you dream about?  "I have no idea.  I never remember any of my dreams."    

20. What else do you want to say?  "Uh, it's been a good 14 years so far.  Let's hope nothing messes it up!"  

You're incredible, Miles.  Thanks for still hugging me even though you're practically grown.   I can't wait to see what you do next!   

Gisèle, age 16

To see Gisèle at age 15, click here.

1. Describe yourself.   "Passionate, driven, clumsy, smart."

2. What are you thankful for?   "I'm thankful for my family, God, my friends, the theatre company because it lets me be the thing I'm passionate about.  It's such a great environment.  Most of my teachers, because they help me learn... my cats, of course."

3. What makes you happy?   "Things... food.  Food makes me happy.  Dumb jokes.  Theatre, which is going to be all my answers.  Just hanging out with great people.  And also reading.  Like, a good book. Those are hard to come by."

4. What makes you sad or angry?   "Covid.  {She's recovering from it now.}  Being away from home for a long time.  That time of the month.  When someone is doing something that I feel is unjust and it doesn't feel like I can do anything to fix it.  So not being in control."

5. What do you want to be when you grow up?   "Guess.  {Actor/director/producer}  Honestly, Elphaba."  

6. What's important to you?   "My ambitions, definitely.  Following my dreams.  Because that's terrifying and hard, but I truly feel like it will be rewarding.  That and safety for my family.  And for me, but it's hard to be ambitious and absolutely safe at the same time."

7. What do you love most about yourself?   "I laugh at myself, and I like that.  Cause one of the times I find that I make other people the most happy is when I find myself hilarious and I crack up. Whether it be a dumb joke in the car during a pun war with Miles or Dad or in the theatre where I'm now known for breaking character because I think everything is so funny."

8. What do you love most about your mom?   "I think I said the exact same thing last year, which is - you're just fishing for compliments, aren't you?  But I love that you're so strong and courageous.  And this ties in with that - something that I wish I had more of that is so awesome in you is your adventureisness.  Because you aren't afraid of anything.  If someone came to our door and asked you to hop in a plane and skydive, you'd say "Sure!"  Or fly across the world and kiss the Blarney Stone, which you've already done, you'd be like, "Let's go."  I also like your fast typing because it's scary.  And I love how cool your life has been this far.  Because you've done so many things.  Like, you've worked for the Canadian Government while living in the US.  That's crazy to me."

9. What do you love most about your dad?   "I think this will be one of the same answers again, but what I love about you guys stays consistent.  He's hilarious.  And I can always go to him if I need to talk.  (Same goes for my mom!)  He's always there if I'm in the car and think some really deep thought.  He's always ready for some good conversation, and that's great. And also he's just hilarious.  In such a weird way, too.  Like I'll come home from a bad day at school and be doing the dishes or something and Dad will be just laughing staring at the counter or something and I'll be like, "Dad, what are you laughing about?"  And he'll be like, "Look, there's a face!"  And he'll make dumb jokes out of the blue, and you'll just look over at him and he'll be laughing at his own joke.  He can make other people smile while making himself smile at the same time."

10. If you could go anywhere, where would you want to go?   "See, I think this has changed!  Because I've been to more places this year, and I'm also going to Europe later this year!  London.  I'm very excited for London. I still want to see Ireland.  I'm going to be completely honest, if we were hopping a plane and going somewhere right now, it would be New York again.  Specifically, the Gershwin Theatre because I still have not seen Wicked there.  And the building just makes me so happy because I would love to be a part of whatever is in store for that building in theatre.  But also Greece because the water looks cool.  And I want to cliff jump there."

11. Who do you admire, and why?   "I admire you and Dad.  I have quite a few people I admire for different reasons.  Like, I admire you and Dad because you guys raised me and taught me good values.  And I genuinely believe you guys are smart, intelligent, amazing people all around.  I also admire people who are successful in theatre, like Idina Menzel, because she originated my favorite role {Elphaba} and I also love her voice.  It's insane to me that she's so talented.  And then there's Zendaya, who I think has developed such a great career even as young as she is.  Also I like her fashion.  And also just Alan Rickman.  I know he has sadly passed on, but I really admire the work he was able to do on stage and on screen, and all the iconic characters he brought to life, and I love his voice."

12. What do you want to learn more about?   "Um, hmm... driving.  Still working on that.  Oooh, hopefully this time next year I won't have to worry about that anymore."

13. What's something you'd like to do to help someone else?  "I think I'd like to go on a mission trip.   Because I feel like that could help a lot of people, and also it would open my eyes to the world.  A mission trip somewhere outside of North America."

14. What are you afraid of?   "Failure.  And also, and this one's oddly specific, being trapped underwater with something blocking the surface so I can't get back up."

15. If you could only keep one thing, what would you keep?  "See, if it were people it would be my family.   And if it were animals it would be my cats.  And if it were objects, umm... maybe my baptism necklace."

16. What's your favorite memory?   "Well, I think it's hard to choose a favorite memory, but I really love memories from when I was really young, like whatever I can remember.  And there's this one where Miles and I were performing for you and Dad, and I believe we were singing to TobyMac or DC Talk or something like that, and I was singing and Miles was playing the drums.  And we were in the middle of performing for you guys and I did a cool backward dance move and I stepped on Miles's foot.  And then he was mad at me and obviously in pain but I was just like, "Miles keep dancing!  Shake it off!"  Because you guys were watching our fantastic performance.  And I just like that memory because even though I stepped on Miles's foot and didn't' apologize until after the song ended, we both still had a ton of fun and Miles just shook it off.  Also, little Miles is extra cute."

17. What are you proud of yourself for?   "Well, I got Best Performer last year {at a One Act competition}, and so that was a big accomplishment.  I'm hoping to do that again this year.  Also, I started singing lessons, which scare me because I have to actually work on singing outside of the classes, and I'm subject to feedback about my voice, which is scary to me.  But even though it scares me, I'm growing in comfort with it and I know that I'm growing vocally as well, so I'm proud of myself for that."

18. What are you looking forward to?   "Cake.  And food.  {Carrot cake and carnitas - her requested birthday dinner}

19. What do you dream about?  "Um, well once I had a dream where I was in my school - and this was not a good dream - and it was kind of like a school shooter thing, which was terrifying - you should add that to my fears - and it was zombies.  And every time they bit someone that person would turn into a cannibal.  And for some reason Miles was in high school at that time, so we hid in an English classroom's closet and tried not to be eaten by cannibal zombies."

20. What else do you want to say?   "Did you hear about the cheese factory that blew up?  All that was left was da brie."

Gisèle, you have my heart.  I love you more than I'll ever be able to adequately convey.  Happy sweet sixteen!