Hoco Parade

Let the homecoming festivities begin! Gracie is so excited to experience her first high school homecoming this weekend.  I feel super lucky because I teach at a school that feeds into her high school, so today the Oak Park traveling parade came to my school! I got to see Gracie, Kianna, and Kyle along with many of their friends! It was the highlight of my day!  Sweet Hattie had to miss the parade because she was going on a field trip at the same time, but don’t be too sad for her because Ryan joined her for the field trip!  And they had a blast!  

Gracie and Ryan are going to Europe!

An opportunity has presented itself for Gracie and Ryan to take the trip of a lifetime with Oak Park and EF Tours. And we decided to accept the invitation!  They’ll be touring the Swiss Alps with a 2 day stop in Lucerne, Switzerland along with several days exploring the Mediterranean coast  

This trip is the continuation of a few really cool pieces of the past for Ryan and for Gracie. As a high schooler, Ryan took a  similar trip to Europe where he spent time in Lucerne and fell in love with the quaint lake town. On our very first date, Ryan told me his goal was to make it back to Lucerne one day. It’s super special to me, and to Gracie, that he gets to fulfill that dream with his firstborn on her first trip to Europe!  I think he thinks it’s pretty awesome, too!  

If any of you have been following along for several years now, you may remember Gracie’s Ten Year Old Trip?!  On each girl’s 10th birthday, they were given a budget and an atlas to plan a trip for our family. In their birthday card, we express to them the purposes of the gift…a few of these purposes are to instill a love of travel, and to see the value in seeing the world!  While Hattie is in the planning stages of her 10 year old trip, Gracie’s big trip to Des Moines, Iowa was a huge memory and source of learning for her.  Gracie definitely embraced our feelings about travel and has become quite interested in exploring the world. Road trip or Europe trip, she’s game for it all!  

So here we are, planning for July of 2027 when two huge pieces of my heart will head across the ocean to make a lifetime of memories!  I’m so excited for them!  By the way, Hattie and I are planning to take our own trip while they’re gone, and we’re super stoked for our time to make memories, too!  

While Gracie is budgeting her money to help fund part of her travels, if anyone wants to be generous and support our Sweet Gracie in this adventure, she and we would be so grateful. She will be doing a couple fundraisers in the future, but she also has a donation page where you can help by donating funds. At the very least, click the link to see their amazing itinerary map of travel destinations!  

Gracie’s Fundraising Page

Thank you in advance to anyone who feels compelled to support her adventure!  We appreciate you!

Oak Park Pommie

Last night Hattie and some of her friends joined the Oak Park Pommies for the home game against Smithville. They got to perform a dance that they learned last week at the halftime show! Even though Hattie is my Volleyball Girl today, she’ll always be my dancing girl!

Volleyball with My Girl

Hattie decided this summer that she would like to try volleyball in the fall. I signed her up for a local recreational league and also mentioned in the registration that I would be willing to be an assistant coach. Well, of course we all know how that goes… they were short coaches so now Momma Weaver is also known as Coach Weaver!

We have a lovely team of 10 girls who have never played before. A couple of the girls are some of Hattie’s best friends! These girls are also my former students which makes coaching them super special!  We’ve had four practices and this morning was our first game. I was so impressed with the girls! For their very first game, they lost two sets and won one set. We even had a few volleys!  Hattie didn’t get any serves over the net, but improving her serve is on her list of goals. I love that she’s setting goals for herself!   

I’m loving this volleyball journey with Hattie!   She’s finally participating in a sport that I also loved as a child and as a grown-up. I’m able to pass along tips and tricks to her and actually be effective! She’s also learning to move her body in a different way than she does at dance, which is another added plus! I’m not sure what the future holds for my little Volleyball Baby, but I know that we are having a ton of fun in our first season!

A big thank you to Aunt Steph for taking some photos for me!

Bringing Back the Blog

For those who haven’t heard, my Instagram and Facebook accounts were deleted because of an alleged violation of their Community Standards. I’m not sure if I’ll head back to the Meta platform ever, but I still want to be able to share my family and my thoughts. That was the whole reason I joined Instagram and eventually Facebook…  to document my girls’ childhood. Now those memories have been deleted, which is okay because I kept all the photos on an external hard drive. It’s just my words that are gone. 

So I’ve decided to resurrect my blog!  I’ve always loved going back and reading my blog post from when the girls were young and when I worked part time. Now they’re older and busier than ever, and I work full-time. But I still want to carve out a space to share my memories and thoughts for them and for me. If you’d like to follow along, check back often for updates on the Weaver family! I think you can also subscribe with your email?! We’re still ‘Livin’ the dream!’

I finished Radiation!

I know it's been a while since I updated the blog, but that's a good sign that life is finding it's way back to some kind of normal.  People tell me that life after cancer is never the same as life before cancer, but so far, I'm finding that it's not terribly different for me.  I have plenty of appointments and take more pills than I ever have, but I'm back to cooking for myself (I sure do miss the Meal Train!) and cancer doesn't consume every conversation I have.  It's good to know that the worst days of this ordeal are behind me.  I'm grateful that God kept me through those days and I'm pleased with myself for not letting the struggle get the best of me.  All in all, life after cancer is a good place to be.

First day of radiation (left)
Last day of radiation (right)

The last time I blogged, I was about to begin radiation.  Radiation wasn't a picnic, but it wasn't as bad as chemo.  I underwent 20 treatments, one every weekday for 20 days, except Christmas.  Which meant I finished on December 26th.  The first 15 treatments radiated the same area day after day.  Every other day I wore a bolus to even out the treatment on my skin.  The area was a giant square that stretched from just below my collar bone to about 5 inches below my incision.  It also reached across my sternum and wrapped around to my back.  They added another small patch of radiation to zap the lymph nodes in my neck that run near my esophagus.  The final 5 treatment were called "boost" treatments, which focused specifically on my scar and the surrounding 2 cm.  This area is a common site for recurrence, which is why they do the boost treatment.  Because radiation is a cumulative treatment, you don't notice much in the first few days/weeks, but the worst of it comes 1-2 weeks after you've finished.

For me, the worst side effect was the burning of my esophagus.  I didn't even know it was a possibility.  After a week of treatment, I started getting a sore throat.  I thought I could be getting sick, but then decided that maybe I had somehow scratched my throat by swallowing something sharp, like a chip or crispy bacon or something.  That feeling continued to intensify for another week and a half before I brought it up to my radiation oncologist.  He didn't seem concerned, saying it usually just feels like a scratchy throat, but let him know if I needed some medicine for it.  Well, either I'm a big ol' baby about pain, or the radiation burned my esophagus more than he anticipated because within 2 days, I could barely eat.  I had to take tiny bites and chipmunk it into my cheek to swallow it just a very little bit at a time.  I also developed this feeling like a pill was stuck in my throat.  I think it must have been a blister on my esophagus or something, but it was just past my gag reflex.  For about 2 weeks, I felt like I could vomit at any moment because the thing that was stuck just wouldn't go away.  The doctor prescribed me a numbing mouthwash, they call it Magic Mouthwash, as well as a drug called Carafate.  I had high hopes for the mouthwash, but turns out it's junk.  It numbs your throat, tongue, lips, etc for like 3 swallows and then the food/drink washes it down and you're back to where you started.  Plus it tastes terrible, so it's not worth it.  The Carafate, on the other hand, was more helpful.  It didn't take the pain away, but it coated my throat enough to lessen the discomfort.  I took it 4 times each day and did my best to keep eating and keep drinking.  I pureed as much food as I could and ate a whole bunch of soup.  Love me some Panera!  I ended up losing around 10 pounds in a 7 day period.  It was no fun starving because I just couldn't swallow anymore food.  Thankfully, I'm feeling much better.  The esophagus isn't completely healed, but it only bothers me if I don't eat slowly.  So I just make sure to eat slowly!  The entire experience took me back to the days of my dad's radiation.  His was way worse than mine and he was such a trooper through it all.  I tell you, through my cancer journey, I've really learned that my dad was a tough cookie.  A total beast, really!  I think I inherited my grit from him!  Don't take that the wrong way though, my mom is a force to be reckoned with in her own right!

The only other annoyance from radiation is the skin burn.  For me, it didn't really develop until a week after my last treatment.  Prior to that, I had tiny blisters all over my skin, but I preferred to think of them as a rash... it made me feel better about things!  But once the treatment was done, the cumulative radiation dosage gave me blisters in my armpit and along my incision.  They're still in the process of healing, but haven't caused me much pain.   Some people have quite a bit of fatigue during treatment and for a few months afterward, but I haven't really noticed it much.  I mean, what mom isn't tired all the time?

I got to ring the bell after my final radiation treatment.  It was a happy moment!  It finally hit me that the worst days were behind me.  At the beginning of this road, when I was first diagnosed, I was feeling very overwhelmed with the treatment plan.  People told me to focus on taking it one day at a time.  And so I did.  I took this journey just one day at a time and really asked God to give me the strength to make it through what I needed to each day.  He did.  When I rang the bell at my last radiation, I realized that the culmination of every single day, one at a time, had brought me to the other side of all the things that overwhelmed me at the beginning.

These are the sweetest nurses at NKCH!
One of the silver linings of this cancer experience has been the lovely people I've met.

I've also gotten started down the ovarian suppression path.  I've had my first two shots already, only 118 to go!  Just kidding!  Until it's down to a number I can make with my fingers, I am absolutely not counting down.  I had my first shot on the Monday after Thanksgiving and I was pretty worried that when I woke up on Tuesday, I would be a different person.  Thankfully, that did not happen.  I've had moments of feeling quick to anger, but they've been few and far between.  Honestly, I have felt that way before ovarian suppression, so it's not drastically different. The biggest change I've noticed is the night sweats.  They're as intense and annoying as they were when they first came during chemo.  Right now I'm still trying to give my body a chance to regulate itself.  If they continue to be a problem, I'll ask my doctor for help in managing them.

My hair is coming in, slowly but surely!  It's still super gray, but all in all, I won't complain.  I'm hoping to continues to grow quickly and thicken up.  I'm still using the mermaid hair spray I made with essential oils.  My friend Kristi gave me Sugar Bear Hair gummies to promote hair health, too!  They're super yummy!  Santa brought me a hair serum to try and I like it!  It's so easy having short-short hair... boys have it easy!  Wash.  Condition. (I don't even know why I condition my hair?! Must be a habit.) Towel dry.  Run product through hair.  Done.  It's ridiculous!  I've said all along that I will go back to my long hair because I miss curls, braids, ponytails, etc.  But I've decided that I'm definitely going to try to enjoy the journey back to long hair.  I may get there in a few years or I may take longer.  I've been saving hairstyles I'd like to try along the way, so I'm gonna have fun with it!

 Just like always, my family has found plenty of adventure and fun to keep us busy!  One of the many things I've learned through this journey is to take advantage of opportunities as they arise.  I can be such a type A personality.  I like things a certain way and if things don't seem perfectly ideal according to The Kristy Weaver Way, sometimes I get nervous about participating.  But I'm learning to enjoy things, even when they make me nervous.  I'm learning to value fun, even if I'm going to be out later than I'd like to be or my girls are going to get out of the little routine I prefer for them.  And it's been good for me!  I don't really do New Year's Resolutions, but this year, I hope to loosen my grip on the wheel of life and see where the road leads.

Dressing like pioneers at The Pony Express Museum in St. Joe

The Fabulous Five

For now, my personal prayer requests are much less urgent, but because I have so much prayer support, I'll put them out here.  I do have a few friends who could use some intense prayer, so if you're willing, please pray for them as often as you think of them.

• Please pray for my friends fighting cancer.  Sarah.  Gavin.  Cathy.  
• Please pray for the family of my friend Janis.  She lost her battle with cancer, but won the ultimate prize in heaven with our Father.  Her family is the sweetest and please, just ask God to cover them in peace and comfort.  
• Please pray that my cancer does not return.  Ever.  
• Please pray that my body would regulate the side effects from my longterm hormone suppression without the need for medication.  

   

The Next Phase...

The next phase of my treatment begins this week!  I'm somewhere between "Let's get it done!" and "Do I really have to do this?".  But all in all, just like with chemo, I know that you have to start the race in order to get to the finish line.  So let's get started!

A lot has transpired since my last blog post.  I'll give a short recap for those who are interested.  After meeting with my surgeon, Dr. Wagner, on Halloween, I left with the understanding that my future treatment plan included radiation and ovarian suppression.  I was considering the clinical trial for radiation, which gave me the option of having 4 weeks of treatment instead of 6 weeks.  But when I went to my oncology appointment, my oncologist, Dr. Satelli, explained that she did not think I was a good candidate for radiation or ovarian suppression.  I was super confused, as I'm sure you can imagine.  Over the next few days, several conversations took place between my doctors, as well as a team of doctors at what they call "tumor conference".  The team decided that I would benefit from both radiation and ovarian suppression.  So back to where we started!

My surgeon recommended I meet with a radiation doctor, Dr. Mitchell, who is fairly new to KU.  She moved here from MD Anderson (a major cancer research hospital).  Because of all the confusion/conflicting opinion about whether or not to radiate, my surgeon thought I should sit down with  the best of the best.  And she was right!  I adored Dr. Mitchell and she helped me to understand why it's so important for me to add radiation to the next phase.  In short, a woman of my age with a tumor of my original size/type has a 25% chance of reoccurrence without radiation.  If I could insert that emoji with the big eyes here, I would!  Holy cow!  1 out of 4 women in my situation will have reoccurrence?  I am not at peace with that number.  Luckily, neither was my surgeon and neither was this doctor.  Women in my situation who receive radiation treatment have roughly 9% reoccurrence rates.  So 9% is closer to the number I'm looking for, but still not ideal.  By adding 10 years of ovarian suppression, my chances for reoccurence are at about 4.5%.  While that number is still higher than I'd like it to be, I feel strongly that it's important for me to do everything I can to decrease my chances of this coming back.  If I have to fight breast cancer again, I will absolutely put the gloves back on and enter the ring.  However, if I can avoid ever going through this experience again, I would like to do so.  

Dr. Mitchell was so thorough with me, explaining that the radiation situation with my dad (see previous blog post) is not likely to happen to me.  It's not out of the realm of possibility, but my chances are less than half a percent.  We discussed the 4 week trial in great detail and because she is co-sponsoring the trial with Dr. Wagner, she could not offer me her personal opinion.  But I decided to go for it!  I mean, if Dr. Satelli doesn't even think I need it and these two doctors think I do, then surely 4 weeks is enough, right?!  Both Dr. Wagner and Dr. Mitchell told me that the preliminary data from the trial is really good.  All the numbers look better in the 4 week trial than in the 6 week standard of care (reoccurrence rates are lower and side effects during and after treatment are also lower).  

Because Dr. Mitchell practices in Kansas and I want to get my treatment up north, I will have 2 radiation oncologists working together for my treatment plan.  A few days after my meeting with Dr. Mitchell, I met the other doctor and got all set up to begin radiation next week.  I even got 5 new tattoos.  Eek!  I've never wanted a tattoo, but now I have 5 tiny black freckles they'll use to line up the machine properly.  After that tiny tattoo experience, I feel it's important to note that I never intend to get a tattoo for fun.  I mean, seriously, all of you crazies... that needle is not a joke!  Once I begin radiation, which should be Tuesday or Wednesday of this week (we're waiting on insurance) then I'll receive 20 treatments every weekday, until it's done.  I'm really hoping to be done by Christmas, but if we don't get started until Wednesday, that'll throw me to December 26th.  Come on insurance!

So the other big part of the next phase of my treatment includes ovarian suppression and tamoxifen for 10 years.  Because my tumor was fed by estrogen, it is important to block any remaining cancer cells from feeding on any estrogen.  Hopefully there are no cancer cells left, but there could be, we just don't know.  From what I understand, the tamoxifen works as a blocker, not allowing cancer cells to feed on the estrogen in my body.  Some doctors think tamoxifen is enough protection.  Dr. Wagner does not agree, she feels that it's very important to suppress my ovaries, which prevents them from producing any estrogen at all.  So rather than relying on the tamoxifen alone to block the estrogen, we're going to stop the estrogen plant altogether so that any cancer cells feeding on estrogen will die of "starvation".  I'm sure this is a very basic and probably oversimplified version of things, but it's all I know!  

I met with the nurse practitioner to get educated about the ovarian suppression.  And to be honest, I'm the most nervous about this part of my future treatment plan.  Without going into all the details, I will be in medical menopause.  It will happen to me overnight.  In fact, they said some women say they wake up the next morning and feel like they've aged 15 years.  The slowly dissolving pellet they will place in my lower belly each month will keep me in medical menopause every month for the next 10 years.  I could (probably will) struggle with hormonal issues, especially for the first 3 months or so.  The issues include mood swings, depression, hot flashes, night sweats, vaginal dryness, low libido, weight gain, bone loss, etc.  I'm hopeful that my body regulates itself quickly and efficiently because I am pretty nervous about some of these side effects.  The biggest fear I have for the short-term is the mood swings.  I even told the nurse practitioner that I'm usually a pleasant person and I enjoy life.  I'm worried that I will swing between sadness and rage so often that I will struggle to feel joy.  She told me to be patient with myself and do my best to give my body time to regulate itself.  There are medications I can take for nearly all of the side effects listed above, but she said it's best to try to make it through the first 3 months or so because many of them may not be as severe as my body gets used to the lack of hormone.  What most women experience slowly, over the course of several years, I will experience in one day.  She likened it to hitting a hormonal "brick wall".  It's likely that I will feel upside-down for awhile.  That being said, I've talked with several women who have had hysterectomies, which is a similar experience, hormonally speaking.  Many of these women said they had little or even no side effects after surgery.  I'm also hopeful that because I've been in medical menopause through my chemo, maybe my body won't be as shocked as it would have been otherwise.  When I asked the nurse practitioner if most women in my situation make it through the 10 years, she said some do and some don't.  It's up to me how long I want to continue ovarian suppression, but the research shows that 10 years is the most effective.  Right now, that is.  My endocrinologist who I see because of hypothyroidism reminded me that medicine is always changing and they could come to me in 3 years and say that research shows that 5 years is sufficient.  He also said he thinks I'm doing the right thing and he fully believes my body will regulate itself in time.  

So, to stay true to my style of sharing everything, I'll be completely honest and share that I'm worried about the next few months.  I'm worried that I'll be a terrible mother because my moods will be all over the place.  I've dreamt my whole life of raising a family and now that I'm here, I worry that I won't be able to do it the way I want to because I'm cranky.  I worry about the effects of my ovarian suppression on my marriage.  I worry that my job will be even more stressful because I feel like a tornado inside.  I worry that my bones will deteriorate by the time I finish 120 injections.  But as I've gotten used to the idea, I have decided a few things.  Whether or not I'll experience these side effects and the degree to which I'll experience them is not within my control.  I may have to work really hard to choose my attitude, but I can do my best.  I've already discussed my potential crankiness with my girls and Ryan.  I'm going to allow myself the grace to take a time out when I need to.  I also know that God has not failed me yet.  Not even once.  So I have complete faith that He will see me through this potential trial, just like He always has.  I will take this experience one day at a time, maybe even one moment at a time.  Those are the only things I know.

The other hormone at play in my cancer is the HER2 hormone.  I've already shared that I'll receive herceptin infusions until June of 2019.  Once I finish the herceptin, I can have my port removed and then I'll take an oral pill that blocks the HER2 hormone for another year.  But I did receive some bad news about the herceptin infusions.  When the tumor conference met, they decided that since I responded so well to the drugs given at chemotherapy, they wanted me to continue the perjeta along with the herceptin.  That's the icky diarrhea drug.  As if that isn't bad enough, because I haven't been on the perjeta for the last 2 infusions, I have to get the "loading dose" again.  In case you forgot, I learned after my first chemo that "loading dose" is code for "double dose".  Yeah.  The last time I had the loading dose of perjeta, it was not pretty.  Not even a little bit.  It was the worst 3 weeks of the entire chemo experience.  And now I have to do it all again.  Except this time, my bowels are already loose because they still haven't recovered.  And, to add insult to injury, the carboplatin and taxotere chemo drugs constipated me, so they always worked against the perjeta.  But now, it's just me and my Imodium!  Actually, I'm going to take the prescription lomotol because I just don't think I'll make it without something stronger.  I've already decided that if things aren't going well, I'm going to request to get IV fluids.  And because I'll need to be able to drive to the hospital to get radiation every day, I have to be able to leave my house.  Eek!  What if I have another experience like the Dollar General Hell I experienced earlier?!  Dear Lord, please, please help me.  Amen.  I've already decided that it'll be what it's gonna be and I'm just gonna roll with it.  There isn't any other choice!

The last thing to report is that I'll be returning to work on December 3rd.  Hopefully!  That gives me one week to get used to the ovarian suppression and to get my bowels under control after the perjeta loading dose.  I should also have nearly a week of radiation under my belt by then, too.  It's going to be a crazy time, but I'm just gonna bite the bullet and get back into the swing of things.  I hope the students are able to handle Mrs. Weaver without estrogen! Heck, I hope I can handle Mrs. Weaver without estrogen!  Haha!

So if you see me after Monday and you think I seem off, please know that I'm trying.  I apologize in advance if I'm not much fun to be around or if I lose my cool and say something I shouldn't.  This is a learning time for me and I'm hoping I catch on quickly!  

In an effort to document my journey for myself to look back on later and for others who may walk this road in the future, I wanted to share how the hair re-growth phase is going.  I've been using RenPure shampoo and conditioner with biotin and collagen.  I've also been spraying my hair with an essential oil concoction dubbed "Mermaid Hair" which is a mix of rosemary, cedarwood, lavender, witch hazel, and water.  I'm not sure if it's working or not, but it sure smells good!  I've also tried taking biotin gummies, but they made me feel nauseated, so I ditched them for now.  

The picture below is 5 weeks post-chemo.  It's actually deceiving to say "5 weeks post-chemo" because really this picture was taken 8 weeks after my last infusion.  Since my hair continued to fall out for the entire chemo cycle (3 weeks), I didn't start counting weeks until after the chemo cycle was over.  

The picture below was taken after my last chemo cycle.  I hadn't shaved my head in a week and I never intend to shave it again!

This was taken on my last day of chemo.  My head was freshly shaved!

One last thing to share, in case someone needs this in the future.  I started using a scar softening oil about 3 weeks after my surgery.  To make it, I filled a 2 ounce glass dropper bottle with 40 drops of lavender, 40 drops of frankincense, and filled the rest with fractionated coconut oil.  It smells amazing and my scars look great!  I just massage the oil into my scars twice daily.  I'm supposed massage them twice daily anyway.  If it weren't totally inappropriate to post a picture of them on here, I would show you how good they look!  Haha!  

I have several prayer requests at this time, but I'll try to keep the list short and sweet so you can remember to pray for everything on it.  I sincerely appreciate your prayers, friends!

• Please pray that the cancer does not return.  Ever.
• Please pray that I experience few/no side effects of the ovarian suppression and that my body returns to a "normal" feeling quickly
• Please pray that radiation will be uneventful, both now and in the longterm future
• Please pray for an easy transition back to work for my family, my students, and myself
• Please offer a prayer of thanksgiving to God for all that He has done in my life and through my life