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. 

Hi There!

Hi!

It's been a while.

A long while.

I've completely fallen out of the habit of blogging.  There have been a few changes in my life, and overall things are good.

Both of my sisters have moved to Texas with their families.  (Yay!) Andrea is about 3 hours away, and Brandi is 10 minutes down the road from me.  With Brandi being so close, we finally started the bakery that we've been dreaming about for so long.  We're baking out of my house and delivering goodies locally.  (Check out thesweetcreambakery.com!)  We bake 5-6 days a week, and we're loving it.

Jamie got a promotion, and now has the title to go along with what he's been doing at Halliburton for quite some time now.  He's been working at home since the start of the pandemic, and it has been wonderful to have him so close.  

Gisèle is a freshman in high school now and doing amazingly well.  She's taking advanced classes, maintaining an A average, and is a full-blown drama queen - meaning a theatre kid.  She wants to be a director/actor when she grows up, and will be competing at the National Thespian Festival in Solo Acting in June.

Miles is a 6th grader and loves his percussion class.  He's doing well in school, and takes an 8th grade Critical Thinking class once a week along with some other advanced students.  He's also still loving taekwondo.  He's a senior purple belt and on the JV team.  We're at taekwondo with him 4 times a week, and there's no sign of him slowing down.

I've been doing okay, health-wise.  I'm still NED (No Evidence of Disease), which I am incredibly thankful for.  Treatment has caused a host of side effects, so that has been difficult.  After chemo, surgery, and radiation, I can say that I'm out of "active treatment," but I still take daily pills to try to prevent a recurrence or metastasis, and get injections to shock my body into menopause every month.  All the treatment has caused hypothyroidism, so I'm now taking Synthroid daily.  I also have rheumatoid arthritis, and have gained about 55 pounds.  I don't feel like myself anymore.  It's hard to look in the mirror and see someone else, and it's hard to get out of a chair and feel like an elderly woman.  I have to constantly remind myself that any extra time I have is a blessing, and the side effects are worth it.  

Some pictures to catch you up since October:

Gisèle went to her first Homecoming Dance

We celebrated Halloween!  Butterfly, spoilsport, Dragon, and Injured Knight

G finally got her braces off!

Our Christmas elf putting the star on the tree

G was Sally in A Charlie Brown Christmas with Mustang Playhouse

I had a bone infusion.  My osteopenia is edging toward osteoporosis.

We were able to see Matt, Natalie, Q, and Sophia before Christmas.  Nana led us in some painting.

We spent Christmas and New Year's in Oregon with Mindy & Jeff & co.  The kids got to play in snow!

The girls

The boys

We celebrated Dad's (Papa's) birthday, and he even wore a hat while we sang

G on one of our bakery deliveries

A beautiful Texas sunset.  God's way of reminding me to choose joy.

It's Already October!

It's already October!  Fall has started, and this weekend is supposed to actually start feeling like fall in Houston, which will be incredibly welcome.  And Miles is turning 10, and I get to see my bestie!  Good things coming this weekend!

Things have been very busy around here lately.  Gisèle has cheer and/or theatre every day after school, and Miles has taekwondo 3 days a week.  He has been asked to join the JV team/class, also, which will add a Saturday class starting about a week and a half from now.  With drop-off, pick-up, and activity chauffeuring, I spend a lot of my day in the car.  Joggers, tees, and flip-flops for the win!  (And coffee.  Lots of coffee.)

Jamie loves his position at Halliburton, and we're really enjoying our church and community group together.  We have good friends there and are trying to take the time to have a date night together whenever we can.

Health-wise, side effects have been tolerable lately.  My rheumatologist says I'm showing markers of RA (rheumatoid arthritis) and Lupus, but don't have enough markers of either to have a diagnosis.  I do show definite inflammation in my joints, though, which explains why I hobble every time I get up.   This is very normal post-chemo, and with Lupron, so it's nothing special!  I've also gained weight with the forced menopause, which is extremely frustrating.  I'm about 30 pounds overweight at this point, and it all seems to be settling in a tire around my waist.  It doesn't seem to matter how much/what I eat, or that I'm working out regularly and doing daily crunches.  Somehow, I need to figure out what to do about it.

In other health news, I was diagnosed yesterday with sleep apnea, so that'll be interesting to explore.  Jamie let me know that I've been making a weird sound in my sleep for a few months now - I sound like a woodpecker - so he recorded it and I played it for my dentist when I went in.  She did a 3D xray that showed that my airway is down to 0 - the worst she has ever seen - so put "bumpers" on my back teeth and sent me home with a sleep study device.  The x-rays are still being analyzed by doctors for a full diagnosis, but the sleep study doctor came back the next day with a diagnosis of sleep apnea.  After I have the results from the scans, we'll discuss next steps to take care of it.  (Possibly a DNA, which is a device to widen my lower jaw to make more room for my airway.)

To give you an idea of what I'm talking about, here is an xray of the previous worst case my dentist had seen in her office, and then my airway.  Take note of how far up each airway goes, as well as the red (narrow/bad) areas.

The worst case she had seen before me

My airway

She wants to use my xrays in studies and share them with colleagues.  Just once, I'd like to be in such great shape that a doctor is amazed, instead of so broken that they are intrigued!

Helping Someone Through Cancer Treatment

If someone close to you has been diagnosed with cancer, there are a lot of things you can do to be a good friend to them.  (And lots of things that do not help at all, but those can be covered in another post.)

• Be supportive.  Don't offer advice - cures, things you heard someone else did that helped, ways to improve their lifestyle to improve their chances.  All this does is imply that they did something wrong, and that's why they got cancer.  Or that they haven't done their research, or that their doctor has no idea what they're talking about.  Be supportive - tell them that you're there for them any time they may need you.  Ask if they'd like you to come along on appointments to be another ear, or to take notes so that they don't have to worry about that.
• Offer to come along when they have chemo.  I preferred to put in earbuds and watch something on my Kindle Fire during chemo, but I still wanted someone there with me.  (If for nothing else, I needed someone else to drive.) When Jamie couldn't be there, I had a friend who immediately volunteered to take the time off of work to come along.  And she said that she could talk, or bring along something to do so that I could ignore her if I'd prefer.  It meant a lot to know I'd have company, but that I wouldn't feel like I had to entertain or socialize.  Offering to keep them company is also a way to support the caregiver (my husband, in my case), who needs support more than they realize.
• Send cards/gifts/texts regularly.  I had friends and family that texted me on a regular basis, especially if they knew I had chemo or an appointment.  And texts are much, much better than calls when your energy is low or you're feeling terrible.  Receiving cards or small (or large!) gifts in the mail meant so much to me, also.  Anything that brought my spirits up when I was feeling low was a big help.  During treatment, every day can feel endless/hopeless/terrible, so those bright spots made me feel like things would be better someday.  Gift ideas are listed at the bottom!
• Offer to visit.  And when you offer, give a specific date and time, and then text again right before coming in case he/she isn't up for the visit after all.  (And don't visit if you or anyone in your house is at all sick!)  Cancer is very isolating.  You're suddenly immersed in a whole new world that you never wanted to know anything about, and removed from your regular old life.  Your good friends will stick by you, but more of your friends, you discover, were really acquaintances and they fall away.  When you do go visit, don't be afraid to ask how things are going, and then share what's happening in your own life.  I didn't want visits to be all about me and cancer.  I wanted to know what was going on with my friends, and didn't want them apologizing for telling me about the lows in their lives.
• Support the caregiver.  My husband took time off of work, took care of the kids, did all of the cooking/cleaning/shopping/ all of the driving, went to just about every appointment, and had to watch me go through chemo, a double mastectomy, and radiation.  Anything you can do to support the caregiver - gifts, cards, offering to take his/her place at appointments, sending over a cleaning service, offering to bring dinner/breakfast/lunch, taking the kids for an afternoon, or coming to visit the patient so the caregiver can simply get away for some along time - anything is helpful.  Gifts for the kids - movie gift cards, or things that could brighten their day in any way, made my treatment easier, as well.

Gifts ideas for someone going through treatment:

• Unscented, creamy lotion for dry skin (a major problem during treatment)*
• A luxurious skin cream (face) for dry chemo skin*
• A good lip balm (not scented/flavored)*
• A cozy, soft cardigan or hoodie
• A good neck pillow for use during chemo or at home after surgery
• Gift cards to Amazon, or other places for online shopping
• Pretty scarves or soft beanies (or gift cards to somewhere online to buy them)
• Soft, cute button-up shirts or pjs
• A Sephora or Ulta gift card (I had to replace my makeup with natural brands)
• A big, cute cup with a handle and straw (to make drinking lots of water easier)
• A cute tote bag to take their stuff to/from treatment
• A thin, soft robe for use during radiation so they don't have to wear a hospital gown
• Things to do during chemo - books if they like to read, gift cards for streaming services if they prefer to watch movies/shows
• A gift card for a mani/pedi for when they're able to get out again

*For hormone-positive breast cancers, products have to be paraben-free. For most (if not all) cancers, patients are encouraged to switch to more natural products. I love using items from Josie Maran, Fresh, Acure, and Burt's Bees.  There are many great natural brands out there!

Most importantly,

• PRAY.  God can do amazing things.  Let them know you're praying for them, and tell them specifically what you're praying for.

The "Thank you!" picture I sent to my cousin when I received a gift card from her in the mail.  It was such a surprise, and such a bright spot in an otherwise terrible day!  Knowing she was thinking of me warmed my heart,

 and the distraction of online shopping helped, too.

Spoken Freely Interview

I was interviewed for a podcast!  Spoken Freely is an amazing podcast telling stories that will encourage and inspire you.  My interview came out today, and you can listen here.

Long Time No Talk

It has been a long time since I've posted, but that's because life has been... normal.  (My new normal.)

In good news - better late than never, right? - my scans came back clear!  Except for a small kidney stone and osteopenia, I have nothing to worry about right now!  Though cording has started in my arm again over the last few days, but that's another story altogether.

Jamie is doing great at work, and has been traveling quite a bit.  New York, Chicago, Florida, and Washington DC.  It's nice for him to get away, and he is really enjoying his job.

Gisele finished 6th grade (middle school) on a high, scoring the Principal's Award among many others.  She will be in Production (advanced) Theatre next year at the Junior High, and also made the cheer squad, so she has a busy year ahead.  She's also busy this summer; she has completed 2 weeks of camp (church & STEAM camp), and has 2 weeks of theatre camp, a week of cheer camp, and Camp Kesem still ahead.

Miles is completely in love with taekwondo and recently achieved green belt, the first of the intermediate belts, at Fort Bend Martial Arts.  He has started sparring, and we'll be ordering his personal sparring gear and bag soon.  Master Daniel wants him to join the competition team, and he is really excited about it.  He had a great year at school, but is happy to have a break before 4th grade. He loved church camp - his first year going - and is looking forward to Camp Kesem later this summer.  It's a (free!) week-long sleepaway camp for kids with parents who have gone through cancer treatment.

We're preparing for our family reunion and all really excited to see everyone!  The reunion would have been last summer, but everyone agreed to postpone a year since I was going through treatment.  We'll have 12 adults and 12 kids in a house together for a week and it should be a blast!  We'll be meeting at Lake Texoma this weekend!

So that's my current normal.  Busy, achy, and learning to deal with my chemo curls.  I love it all.  I'm grateful for it.  God is good.

Scanxiety

Today was a hectic day.

Jamie is in Chicago for work, so I'm single parenting it for a couple of days.  (Single parents who do this all the time, I salute you!)  Yesterday was a late night for both kids due to homework and cheer tryout prep.  Today included an emotional breakdown by my son (friend drama) followed by taekwondo, a play audition and cheer tryouts for my daughter, and overlapping pick-up and drop-off times for activities.  We ended by picking up Sonic for their dinner since I'm out of energy.

In health news, I'm continuing to feel more energetic, but joint issues and insomnia are still pretty killer.  And more concerning, I have a sore spot on my ribs on my back right side.

I sent a message in to my care team at MD Anderson about the sore spot.  I let them know it had been here for about 2 weeks, feels like a bone bruise, and isn't the result of any kind of injury.  About 15 minutes after my cancer PCP sent the message to my MedOnc, he called me to let me know he was scheduling a CT and a Bone Scan.

It's not a good feeling when your MedOnc calls you to say he's ordering scans.

On the one hand, I'm glad he's looking into it and getting it checked out quickly; on the other hand, the immediate response makes me feel like he's worried about this, which... has me worried.

I see him on Thursday - in 2 days - for my regular check-up with some bloodwork, and then will have the scans done next Thursday.  If you pray, please be in prayer for me.  Pray that this is nothing, and pray for my emotional well-being while I wait to have the scans done and then wait for the results.

If this is something... it's not good.

Hair Update

Hair growth!  Pictured - at the end of chemo, then 3 months, 6 months, and now 9 months after.  Any tips on taking care of curls, especially at this length?

Flat and Fabulous

I've been asked a few times whether or not I'll have reconstruction done, so I thought I'd address that here.

The majority of reconstructive surgery for breast cancer patients undergoing a mastectomy/lumpectomy is done at the time of the initial surgery. Because of the location of my affected lymph nodes (including one in my sternum), my RadOnc wanted me completely flat for radiation, which meant delayed reconstruction, if any. The failure rate for implants after radiation is very, very high, so my best option for reconstructive surgery is/was DIEP flap.

DIEP flap surgery, which could happen after my skin was completely healed from radiation (minimum of 9 months), is very, very invasive. Feel free to google it, but it basically involves a hip-to-hip incision, the removal of skin & tissue from your abdomen to form new breast shapes, and then the reconnection of all of the blood vessels in that tissue to the vessels in your chest to keep that tissue alive. It's a minimum of 2 surgeries, and the 1st surgery has a 6 week recovery time.

I could change my mind at any point in my life and decide to undergo that surgery, but right now I'm as happy as I can be flat. Here are my reasons:

1) I don't want to put my body through another surgery & recovery. It's a long surgery and a long recovery, and my body has been through a lot already.

2) My kids (ages 9 & 11) have seen me go through enough. I don't want to add an elective surgery on top of that. Right now I'm starting to get my energy back and they're enjoying me looking/feeling/acting more like my "old" self. I don't want to take that away from them.

3) If I went through a surgery, it would just be for aesthetic reasons. It's a lot to go through for lumps of tissue. No matter what, I'll never have my former body back. The new "breasts" might look great, but they won't be the same and I won't have feeling in them. Would that really be worth it? My husband is happy with me just as I am.

4) If I end up with mets at some point, will I have wanted to have wasted all that time in surgery & recovery? Will the new "breasts" be in the way/make any new scans more difficult? Will it be easier to notice a possible recurrence if I just stay flat?

5) I'm actually enjoying being flat, in a lot of ways. I still have to get used to how I look when I see myself in a mirror, and shopping is trickier - things fit differently than they did on my 32DDs - but being flat has advantages. No boob sweat! No adjusting bra straps all the time. No extra layer in the hot Houston weather. Button-ups don't gape over my breasts anymore. And I have an excuse to buy cute new shirts.

So I'm 99% sure I won't want to ever do reconstruction.

The decision is personal for everyone, but I've been happy flat so far. (My bilateral mastectomy was 7/20/18.) If you are going through this process yourself and have questions, feel free to comment or email me and I'll get in touch.

Recovery Update

I have a new normal, now.  Cancer sucks in many, many ways, and I'm introduced to more of them each day.  Living with cancer, going through treatment, and recovering from treatment all come with their own challenges, and it's really an entire world that a lot of people will, God willing, never have to learn anything about.

Emotionally, life after cancer treatment is difficult.  I've never been a hypochondriac, but am almost encouraged to be one now.  My white blood cells are still low (possibly as a result of the medication I'm on, though my MedOnc isn't quite sure of the cause), so I need to stay away from anyone sick, and call my team immediately if I develop a fever.  If I have any swelling in my right arm or trunk, I need to contact my team right away (signs of lymphedema).  If I have any acute bone aches, headaches, lumps, nausea, breathing issues, fatigue... basically, I should contact my medical team if I feel anything out of the "ordinary."  The problem is, my "ordinary" now is not what it used to be.

One good thing has come out of treatment - I have a higher tolerance for pain than I ever had before.  My monthly Lupron shots (to put me into/keep me in menopause) are supposedly painful, but I take them without flinching.  I'm living with daily pain, so what's a little bit more?  The medication I'm on - exemestane/Aromasin - has given me arthritis and incredibly achy joints all over my body, so my MedOnc is switching me to a different AI (aromatase inhibitor) to see if that will be more tolerable.  We'll see if it helps.  In the meantime, I'm trying to take no more than 1 Aleve a day, and I hobble like an 80 year old woman every time I get up.   But I'll live with it because I'll LIVE.  I'll take it over the alternative.

I burned the fingers of my right (cancer side) hand on the stove - just mildly - the other day, and the very next morning felt the beginnings of cording in my arm.  It's been 5 days now, and no amount of stretching or massage on my part has made it any better, so I've sent a message to my physical therapy team, and they're getting an order so I can get an appointment set up.  I love them, but I'm not looking forward to having the cording worked out.  My pain tolerance may be higher, but that will push it to the limit.

My 12 week LiveStrong program at the Y ends at the end of next week, and I highly recommend it to anyone recovering from cancer treatment.  I have 60-70% of my energy back, and I feel so much stronger than I did before I started the program.  It's free, and really has helped me to feel "normal" again.  

My hair is coming back in nicely, though with more grey than before.  It's curly, though still short enough that it looks wavy instead.  It's nice to have hair again!

The Wizarding World

(continued)

Diagon Alley is just as incredible as Hogsmeade.  It's definitely worth it to have the park-to-park passes to see both sides, especially because you can ride Escape From Gringott's on the Diagon Alley side.

The first thing we did when exiting King's Cross Station was to dial the Ministry of Magic from the phone booth to listen to the recorded message.  Then we visited Stan Shunpike at the Knight Bus!

After that, we entered Diagon Alley!  You can look down the street of shops to Gringott's at the end, with the dragon on top.  And every 10 minutes or so the dragon breathes fire; if you're standing close enough, you feel the heat from it.

Inside Gringott's, as you enter the ride

 We ate brunch at the Leaky Cauldron, where we ran into a bit of an issue when we found out that they weren't able to accommodate my food allergies... with anything but a very large plate of grapes.

Jamie and the kids had an amazing breakfast, and I had... a lot of grapes.

We went into all of the stores, including Weasley's Wizard Wheezes, which looks straight out of the films.

More on the parks, including The Wizarding World, in future posts!