The Chirp Wheel

I saw an ad for a chirp wheel on my Facebook today and I had to chuckle a bit…

Then I realized, I hadn’t updated my blog post in sometime.

In fact, I completely forgot to update you all on my new birthday party! We decided that going forward, on the weekend of my one year cancer anniversary, we would have a “pink party”. Everyone was requested to come decked out in pink, we had all pink foods, only pink floatation devices in the pool, and.. the most important piece…a margarita machine.

The party turned out FABULOUS! We had so much fun, and a group of us even spent so much time in our hot tub that our swimsuits bled dye into the water… which colored it PINK! And then subsequently had to be drained the next day because I wasn’t sure if maybe I had just spilled a marg in there a few too many times. 🙄

July 26th will forever be a terrible day in my book. 2021 came the diagnosis with cancer and 2022, my sweet Grandma passed away. How ironic that both terrible things happened on the same day. Note to self: if July 26th falls on a Saturday, the Pink Party will need to be rescheduled for a new date.

At the end of August, I finished my very last Keytruda treatment! It was a bittersweet moment leaving the infusion room knowing that these nurses that I saw so incredibly often and who took such great care of me, I wasn’t going to see on a regular basis anymore. Even though that part was sad, I was incredibly happy to say adios to them in hopes that I would only be back to say a quick hello, or deliver Christmas presents in the future.

It was a very odd feeling when the Oncologist said… “Okay, see you in 3 months!” 3 months!? I’ve practically lived with you guys for the last year and you guys are kicking me out for 3 months!? What do I do now!? Do I still call you guys if I get a fever? It felt so unnatural. I was instructed to call if anything “new changed”.

Flash forward a couple weeks into my 3 month hiatus… and I decided to go get a massage. The masseuse had some very heavy hands. It actually really hurt! Upon massaging my back, I realized that her pressure hurt really REALLY bad. According to the masseuse that was “not normal.”

Of course my mind started racing and I thought.. maybe it would be a good idea to get a chirp wheel to help stretch my back muscles to see if that helped before I took any additional steps towards medical testing. So.. the chirp wheel was purchased.

Mind you.. I had zero back pain when some lady wasn’t putting all of her body weight on my back.

I began using the chirp wheel every day for a week or so… and then my back started to hurt all the time. Sitting, standing, with or without heat, with or without exercise and of course, I’m now stressed.

I called my oncologist and told them my symptoms and they sent me to get a CT scan of my lower spine and pelvis.

The CT scan was pretty minimal, except the contrast makes you feel like you are peeing your wants. A few days later, the test results came back all clear.

So.. lesson learned here.. 1. Evaluate what in the world you are doing to your body before you freak out. And 2. If anyone wants a chirp wheel, I have a set for sale that are elves on the shelves are currently using.

I made it to my first 3 months checkup! I got to make fun of my chirp wheel situation with my oncologist and chit chat with my favorite nurse! I see them again in 3 more months pending I don’t do anything else radically dumb to myself.

Since that appointment, we’ve had Halloween, Thanksgiving, and.. our done with cancer treatment/early celebration of our 10 year wedding anniversary in Saint Lucia.

Saint Lucia, was a dream! We stayed at an all-inclusive called Serenity at Coconut Bay that came with a private villa and a butler! JR and I didn’t know what to do with ourselves!

I had this crazy and radical idea that we should rent a car, drive on the opposite side of the road, on the right hand of a vehicle, through twisty and turning roads to go explore Saint Lucia but I think that gave JR a lot of anxiety… and even more anxiety when I offered to drive. We ended up opting to just stay on the resort because the place was incredibly magical by itself and we really didn’t have a reason to leave!

We spent our entire time reading, soaking in the sun, and slurping down frozen cocktails. We spent one day in a beach cabana and even got to go snorkeling right off the beach! The water was warm and clear and the the weather was perfect the entire time! The food at the resort was also amazing even though they only had one restaurant! The restaurant was 5-star! They even served you sorbet in between courses to “cleanse your palate”.

All in all- vacation was wonderful! We got back and celebrated Beau boy’s second birthday and now are resting up to spend a few days down south with friends and family between Christmas and New Years!

December 14, 2022 0

He’s Still in Your Boat

I’ve thought for awhile about sharing this story and every time I begin writing and get it wrapped up, I for some reason don’t have the courage to share. I don’t know if I was just concerned with people reading this and just thinking I’m just over here trying to be a bible thumper or maybe I just wasn’t ready to share some of the most vulnerable pieces of my journey.. but… first, I don’t care if you think I am being a bible thumper because.. hey, this girl loves Jesus but also I feel like this world has been full of so much negativity and so many people are going through hardships whether it be personal health issues, deaths in the family, health issues of someone they love, financial struggles, friendship struggles, pregnancy struggles or something different that I feel that this lesson learned through cancer is worth it to someone somewhere.

When I was laying in the exam room getting the breast biopsy that would eventually change my life forever, the Doctor and I struck up a conversation. I remember asking if he saw many young people getting biopsies and him saying that while having young patients for breast biopsies wasn’t the norm, it wasn’t uncommon. He made a comment that he sees kind people, young and full of life walk through the doors, and he hopes that their biopsies come out to be benign. When the results came back that it was cancer, the phrase I heard time and time again was something like “it’s not fair that you have to go through this” or “we don’t know why god lets bad things happen to good people”. The other day I was outside speaking with a neighbor who also had breast cancer and we were having this conversation about why god lets bad things happen to good people and we both said the same thing… why NOT me?

I have learned an incredible amount going through cancer. I’ve learned so much about myself, about friendships, about family, and more importantly, I’ve learned so much about my faith. One of the biggest lessons I have learned is that god does not promise to keep bad things from happening to you. What he does promise though, is that while you are going through turbulent times, you are not walking it alone.

That certainly is an interesting concept and I would be lying if I said that I didn’t feel completely lost and alone throughout MANY times in my cancer journey and really just everyday life. There were days during this cancer journey where I felt like I could clearly feel god’s presence and other times where I was wondering how much longer god was going to let the dumpster fire burn.

During the winter, I was in the thick of my chemotherapy treatments and my body was on the struggle bus when it came to producing white blood cells. Of the entire cancer journey, this was hands down the scariest time. My white blood cells would be tanked and my risk of infection was incredibly high. Every time this happened, which unfortunately seemed like a lot, my family and I went into deep hibernation mode. We were extra diligent about cleaning and keeping me away from my petri-dish kiddos if they had even one inkling of the slightest cold…. and just like every other family with children during this crazy time, my children got hit HARD with what seemed like every single sickness introduced to mankind.

There was one month there that I had zero infection fighting abilities and one kid came home with the stomach bug. The puke was happening, the poo was happening, and we were all a hot mess. As soon as one kid got better the other got it. Then some little cold viruses came with some ear infections and then the dreaded covid hit the house. I don’t remember exactly the sequence of events but I can clearly remember a day where it felt like we had been living in a constant state of cleaning vomit laundry and wearing masks in the house and then one of the kids came down with yet another illness. (Might have even been the positive covid test.) I can vividly remember both kids crying as they were both sick and looking over and seeing JR taking a moment to gather himself hunched over the kitchen sink, head in his hands seemingly crying or getting ready to scream. At that point, I remember thinking “Ayo Jesus, are you just going to let us all suffer over here or do you think that maybe we’ve had enough bullshit to deal with by now?” If there was ever a time where I felt completely lost, deserted, and alone by God.. it was this exact moment. Now, things eventually turned around. My white blood cells eventually came back up. The kids inevitably stopped puking and the Rams even won the Super Bowl… big deal at the Lauer household.

Not long after this hot mess express of a month, my auntie sent me a link to a sermon she had heard at church one Sunday and told me it made her think of me. It quite frankly was one of the best sermons I have ever heard. To this day, I have listened to it over and over again… and every single time I hear it, I think back to this day where I saw JR in complete defeat leaning over the kitchen sink.

The main point of this sermon, is that god is always in your boat. (Second lesson learned from cancer.) When life’s waves are throwing you every which way God is still in your boat. He may be silently basking in the sunlight in the bow of the boat while you’re trying to navigate the rough waves (kind of like how I used to do when we had our boat.. me soaking up sun in the bow of the boat, JR strategically navigating the waves), but he is still there, by your side, helping you navigate and figure out how to extinguish the dumpster fire you’re going through.

Looking back on the situation now… I can see how God was working in our lives even though it felt like he was completely absent. He was driving our family closer together. He was teaching us about faith and about patience. He was teaching us to be thankful and to appreciate one another and he was silently helping us get through the rough waves to the calmness on the other side.

With so many terrible things happening in this world and so many people questioning why god would let such bad things happen, I felt compelled to share. Below is the link the sermon that I have continued to listen to when I feel like god is going silent on me. Not only is the message great, the preacher is really hilarious.

Prayer Requests:

Everyone knows someone that is going through a difficult time right now, pray that they know that they are not alone.

https://subspla.sh/xzx3mdh

July 28, 2022 0

Fins on an Old Chevy

Well…. as you may have noticed, my blog has a new look and feel. The blog creator I was using previously was just not really working out for me anymore. I don’t know about you, but I like this one way better!

These past few months I have been going about my merry way…just living my life as my oncologist told me to do! I have been getting back into the groove of work, chasing kiddos at home and cheering them on at sporting events, spending lots of time in the sun out in the pool, and checking off those Keytruda treatments. This week, I checked off #16.. only 2 more to go!

As far as treatments, I have no side effects from the immunotherapy. My hair is even starting to grow back! I have a great gray patch growing right in the front. It’s great. HA! It’s also growing in curly, which I’m not really surprised about as I actually have naturally curly hair. It’s also at this wonderful length where it’s not really what I would call a “Karen” haircut.. but more of like a “Carol” haircut. Meaning.. it basically looks like my Grandma Carol’s hairdo. If I could compare my at the moment hairstyle to someone famous, it would look very similar to Daniel Stern’s hair in Home Alone and when it’s combed back, my husband says it looks like the “fins on an old chevy.” I can’t even make this stuff up.

My foobs are healing up really well! Besides some weird sensations that feel like zaps of pain or vibrations, everything seems to feel really normal. The initial vibrations post-surgery were actually really crazy. At one point, I was laying down and felt a vibration that I thought was my phone ringing. Upon sitting up, I realized that my phone was actually no where near me. That happened a few times! Now, I only notice it after a run or some sort of “bouncy” activity. I really am so glad that I decided to go above the muscle with my implants. I have been able to lift weights and do push-ups with no restrictions!

In the past few weeks, I turned 31. My birthday definitely “hit” differently this year. I honestly didn’t feel too much up for celebrating. I’m not really sure why. Exactly one year ago, a day or so around my 30th birthday is when I found that massive lump in my breast and about this time last year, I was getting biopsies and anxiously waiting for results that I was almost certain would turn out to be nothing. It sure has been a whirlwind since then. All I can say, is that even though it felt incredibly somber, I am incredibly thankful to have had the opportunity to celebrate another year and another birthday.

Life is so incredibly precious. I think god every time I get to see another day… the good and the bad days. I thank god every time I am running like a crazy woman trying to get kids out the door or to a sporting event, changing another dirty diaper, or listening to my husband tell me about how awful his 5 am CrossFit workout was. (You know the #1 rule about CrossFit, is to ALWAYS talk about CrossFit)… Side note, if you have never seen Heatherland’s I Ain’t Doing It video about CrossFit, you’re missing out. I will definitely link it below. You can thank me later. 🙂

I do plan on keeping up on the blog. I have so many things I want so share with you all… health updates on me, health updates on Beau, future scholarship funds JR and I plan on creating, and just some overall lessons learned.

Prayer Requests:

I challenge you to think of three people in your life that might be going through a tough time.. maybe even just a bad hair day and raise up some prayers for them. 🙂

July 14, 2022 0

5/2/22 Post-Surgery

So many people have been asking for a blog update and I just realized I had one in draft mode from the week following my mastectomy that I never posted. 🤦🏼‍♀️

In my last blog post, I was getting ready for surgery. March 10th was the date of my double mastectomy. I was incredibly nervous leading up to surgery. I wasn’t necessarily concerned about the outcome but I was nervous about being intubated- which I had never had done before.

The day started with getting dressed in the surgical gown and then heading up to nuclear med to get lymph node mapping done. To do this, radioactive dye is injected in your breast near the tumor site and and the lymph nodes closest to the tumor show up as radioactive. This gives the surgeons an idea of which lymph nodes need to be removed. I had heard that this was the worst part of the overall procedure and to be honest, that is probably accurate. It felt like a bee sting and in a few moments, it was

over.

I remember praying my heart out on the table, praying to god for no more cancer. There are probably a handful of times where I can say that I have clearly heard god’s voice and laying on that table, I heard god telling me that whatever the outcome, it would be alright.

Going into surgery, I walked right in. Got onto the table and the last thing I remember was them giving me some sort of medication. When I asked what type of medicine it was, they said “just a medicine to make it feel like you’ve had a few Cocktails.” The last thing I remember is saying “well, I certainly like cocktails.” The rest is history. I probably told some raunchy stories of some sort before they actually knocked me out. Fingers crossed they weren’t too bad!

When I woke up, I was the last person in the Baylis building. The nurses were so surprised that I was up, energetic, and smiling! They said I did better than people who had way shorter surgeries than me that day! 💪🏼

The soreness afterwards was definitely undeniable. However, the pain was manageable… especially when I wasn’t being a stubborn 💩 and took my medication as directed.

During surgery, they ended up taking 5 lymph nodes out of my cancer side as well as all of my breast tissue, including nipples. At the last minute, they gave me an option to leave some of my areola which they said would give them good “material” to color match against if I wanted nipples reconstructed later on down the road. I went ahead and went for that option and to be honest, I am very happy with the results.

As far as reconstruction goes, I did an immediate reconstruction over the muscle with silicone impants. That means, I got implants put in at the time of the mastectomy because I didn’t necessarily care about what size I ended up as. The implants were inserted over my muscle and cadaver tissue was used to make a sling to hold the implant in place. I opted for this type of surgery because of doing CrossFit and working out. All in all, I am incredibly happy with the results. I mean, my breasts obviously don’t look the exact same as they used to, but.. they are relatively the same size as they were post surgery AND perks to not having nipples… I don’t have to wear a bra if I don’t want to!

About a week after surgery, my pathology reports came back and much glory to god- I had a complete response to chemo! This means that the cancer responded incredibly well to chemo and there was no cancer left in the remaining mass in my breast or in any of the lymph nodes! Having a complete response is huge for TNBC! My recurrence rate without a complete response was pretty high. However, with a complete response, my recurrence rate is about the same as anyone else who had breast cancer. One doctor said about 5% whereas my oncologist said 5-10%. I will take it!

Having a complete response also means no radiation or additional chemo for me! A huge relief! To complete my treatment, I do have to do 9 rounds of immunotherapy which thus far, I have actually already done 2! So, 7 more to go! I go once every 3 weeks and luckily, the immunotherapy has minimal side effects!

In the last few weeks, Beau boy had his second appointment at the Neurofibromatosis clinic in STL. Beau is doing great! He saw his neurologist and saw an ophthalmologist to check for optic tumors. So far, fingers crossed, it doesn’t look like he has any growing! We are going to hope and pray that it stays that way!

In the last couple weeks, I have also returned back to work. I am over the moon to be back in the office and get to see my Horace Mann friends a few times a week! Seeing people physically in the office has been amazing!

This past weekend, we took Tinleigh to a soccer tournament and did our first overnight in a hotel as a family of four! Beau boy did great and Tinleigh did great on the field! I was super proud of her! I love how much she loves soccer!

All in all, we have all been enjoying getting back to a new sense of normalcy. Which, has really been a blessing for everyone in the household- especially my Tinleigh girl.

Prayer requests:

1. Please pray for no cancer recurrence.

2. Please pray that Beau boy continues to not have any tumors.

3. Please pray for Tinleigh as she navigates life with less stress (hopefully) on her shoulders.

July 14, 2022 0

2/21/22 A half a dozen one, a half a dozen the other.. (yes, I know that is not how the saying goes but if you know the inside joke… you may find the title of this one funny)

These past few weeks have been a whirlwind between doctors appointments and snow storms.

While writing my last blog, my blood counts were low and I was getting prepped for another ultrasound. The decision to do the last chemo was really up in the air… and if you know me at all, you know that once I start something, I have to finish. I cannot start something and leave it open ended. It’s a major pet peeve of mine.

When I started treatment, my daughter and I made a paper chain. Each chain link represented a chemo infusion that I needed to get. That last ring was sitting on the shelf and I wanted so badly to rip it in half and throw it away.

Since my last blog post, I got the ultrasound and results are that the tumor has shrunk a tiny bit more! Not much.. but millimeters here and there! Additionally, there is still no blood flow so theoretically, there should be no food feeding the tumor to make it grow! All in all- good news and I will take it! Doctor Gupta put it a bit into perspective for me… originally, the tumor was basically 3.5 cm x 3 cm so it had a surface area close to 10 cm. It’s now roughly 1.3 x .4 cm. This means the tumor has shrunk by approximately 90%!

Following the ultrasound, I went to get my blood levels rechecked. My WBC and neutrophils had completely recovered which was a major shock! This allowed me to get my last red devil treatment and rip apart that last chain link!

Since my last post, I have had the ultrasound, received the last chemo in my plan, and have recovered from it! Thank goodness because this last round was probably the toughest! After chemo, I had one day where I slept 22 hours straight. 😳 That is the first time that has happened and hopefully the last.

I have really been looking forward to gaining back some new normalcy. With my counts recovering, I was dying to get some much needed time with friends! These past couple weekends we have had dinner in with friends, gone to dinner out with friends, attended a birthday party, and… I even made it back to our favorite gym! I walked in and everyone was wearing pink! The support was overwhelming and so much appreciated! My goal was to just keep moving throughout the workout, and I did accomplish that. I did however 100% cheat my reps and I will not even lie about it! 😂 We celebrated the end of the workout with mimosas and… Jell-O shots! How fitting since I just finished my last jello shot infusion! It felt so good to be back even though I couldn’t move on Sunday. 😂

I really cannot thank everyone enough for their continued support. The kindness and generosity we have received leaves me speechless. From everyone wearing pink, purchasing shirts, delivering food or gifts to us, everyone from Horace Mann supporting us, and everyone who donated to the fund that was started in October at Meraki Salon… there are so many people to thank. Everyone has really gone above and beyond for us and I only hope to be able to repay you all someday. I debated whether or not I would share this next story in this blog because it’s personal and slightly embarrassing but it’s also absolutely hilarious looking back on it and it’s the absolute truth so… I’m sharing.

When I was about in 6th grade, I was the super short.. super flat chested girl. I soooo wanted to develop like the other girls in my grade to be like them. For those of you girls that are about my age, you probably remember the little section at Limited Too that had little, slightly padded, slightly cupped bras for girls. Well, I talked my mom into getting me one. We bought the absolute smallest size we could find and I didn’t even fill it out in the slightest but I wore it anyways. The first time wearing it, I was changing in the locker room when one of my closest friends was like “Whoa, look at those babies!” And she totally poked at my new bra which caved in like a sink hole. 😂 I was mortified to say the least.
Flash forward 20 years, I find it so ironic that something that I wished for is now something that I cannot wait to get rid of. The biggest next step for me is a double mastectomy.. which is scheduled for March 10th. I have a multitude of various doctors appointments between now and then.. and I’m slightly nervous but more excited than anything!
During the mastectomy, they will determine if there is any cancer left in the mass that is still in my breast or if it’s scar tissue. They check the lymph nodes for cancer and make sure there is no cancer in any of the other breast tissue. According to my doctor, there is about a 50/50 chance that there is still cancer in the breast… or that it’s gone completely. 50/50, six to one half a dozen the other, a coin flip, glass half full or half empty. If there is no cancer, I will just continue on with immunotherapy for the next 6 months. If there is cancer, I will do immunotherapy plus some additional chemo. Obviously, my biggest hope is for no cancer! But- we will see soon enough!

Many people have been asking about Beau…so a little update on him. Beau was scheduled to go back to the NF Clinic this past week but due to the snow storm, we opted to reschedule his appointment. Now, we will go in April to visit with Dr. Morris at the NF Clinic and meet with an ophthalmologist who will be evaluating Beau for any optic gliomas that he may have. Optic gliomas are tumors that grow in the optic nerves and is the next NF symptom that we will be monitoring Beau for. I will definitely keep everyone updated with the outcome of that appointment! We are hopeful that we will have good results! 🤞🏼
Prayer requests:
1. Please pray for no cancer to be found in any of the tested tissue post mastectomy! I want a complete response!
2. Please pray for surgery to go well!
3. Please pray that my family doesn’t go nuts when I’m unable to lift more than a milk jug for a few weeks.

July 14, 2022 0

1/31/22 One Step Forward, Two Steps Back

Last Monday should have been my last “red devil” treatment. I got through treatments 1, 2 and 3 rather easily and my neutrophil count was going strong! I get a neulasta injection which stimulates bone marrow production with the “red devil” treatment so I honestly thought my days of low white blood cells and neutrophils were long gone.

Ha!

I was truly shocked when Dr. Gupta told me my neutrophils were slightly less than 1 last Monday. In the weeks prior, my counts were above 5! Initially, he was going to give me treatment anyways but after talking it through, we decided waiting one week to let my body recover would be the best course of action.

Today, I woke up fully planning on finishing out my course of chemotherapy. I was mentally prepared and felt physically ready to go! Unfortunately, my blood counts were worse and my neutrophils were down to .3

I’m unfortunately back in the critically low range which means my body was not in a position to receive chemotherapy.. again.

I am now 4 weeks out past my last chemotherapy and every time I get treatment, I am delaying my surgery. My body has to recover in order for me to get surgery. At this point, it’s looking like my body will need 6 weeks at a minimum to recover enough to allow me to get surgery.

So, potential shift in plans coming my way.

I did go ahead and get my immunotherapy infusion. On Friday, I will go and get an ultrasound to check on the tumor.

From there, we will determine how the tumor is responding to chemotherapy. If the tumor is completely gone from imaging, we may forego the last chemo all together and go straight to surgery, or we may go straight to surgery and do the last chemo afterwards since I am “high risk of reoccurrence”. We may wait for my counts to return to normal levels and do chemo.. and then surgery, or maybe we will do surgery and if there is more cancer we will do radiation and a different chemo.

So, right now I feel a little bit in limbo. I hate not having a definite plan… even if it’s only for a week or so that I don’t have a plan.

I am bummed because I really do NOT want to miss a chemo. It’s kind of like baking a loaf of banana bread and leaving out the eggs. Will the banana bread turn out okay without the eggs? Eh, maybe but I certainly don’t want to find out!

I need to place my trust in my team of doctors and more importantly, god!

Prayer Requests:

1. Please pray for my counts to recover and that I do not get any serious infections while my counts are low.

2. Please pray for my team of doctors as they make a decision in my cancer plan.

3. Please pray that the tumor has continued to shrink when I go in for an ultrasound later in the week.

July 14, 2022 0

1/9/22 Light at the End of a Very Long Tunnel

Christmas and New Years came and went way too fast! We had multiple family Christmas events planned and they all got cancelled due to covid!

With the uptick in covid cases, our family has basically been hermits trying to avoid getting covid to prevent delaying any treatments.

While we have avoided covid, Beau boy got hit with a stomach bug on Thursday and then we found out he had an ear infection on Friday. He is so puny and whiney!

Red Devil #3 was this past Monday. All in all, the side effects have remained manageable! They seem to just linger a bit longer than they did on the chemotherapy I was doing before. My hair all fell out after the first red devil treatment, including my eyelashes and eyebrows. The only hair that remained was the hair on my legs. How ironic. The one bit of hair that I could do without and it decided to stay.

Even though all of my hair did fall out… it is starting to grow back! PRAISE BE! My eyebrows are coming in black. Super strange because I had light eyebrows before. My eyelashes are about half the way in and I can pull them up in order to get my eyelids open wide to get my contacts in again! I also have a hairline again on my head and a head full of peach fuzz! My nurse said you rub it for good luck! I cannot wait to have hair again!

In other good news, I only have one planned chemo remaining! The reason I say “planned” chemo remaining is because based upon the pathology reports during surgery, that could mean more chemotherapy afterwards. I also feel like if I say “last chemo” that I will jinx myself. So, last planned chemo it is!

I feel like maybe I’m starting to see light at the end of the tunnel but it doesn’t feel real. Even after surgery, I still have 27 weeks of immunotherapy and 5 years before my chances of recurrence go down. Even though it seems that I am getting to the end, it still feels so far away and so dark and scary in the meantime. I am trying to keep my eyes set on the good things that are planned and coming up in the future!

A few things that have been planned/are coming quickly that I am looking forward to:

1. Getting to diet and having the energy to exercise!

2. Going back into the office to see all of my Horace Mann colleagues!

3. A dinner date that is already planned and reservations made!

4. A snowmobiling trip that isn’t even until 2023.. but, I talked my longest bestie into going with us and I cannot wait!

4. Warm weather with lots and lots of swimming with the kiddos! We scheduled our pool opening date the earliest date possible!

5. Traveling with my hubby!

… and so much more! I am so ready to just live life once again!

July 14, 2022 0

12/19/21 No Beau-ndries

This week I got red devil #2.

Then we celebrated Big Baby Beau’s first birthday!

My gosh, time flies… especially when you’re having fun.

I posted on Facebook my yearly slideshows I do for the kid’s birthdays and said that despite all the bad, this year has been ONE of the best years of my life.

I have learned a lot. My faith and relationship with god has done nothing but grow stronger, our family and my marriage has grown closer and stronger, and I have enjoyed every single moment of Beau’s first year. (Seriously, you know you’ve found your match when you’re sitting in an exam room staring at each other and you tell you husband he has 4 gray eyebrow hairs and he returns with “yeah, well you have only 4 eyebrow hairs.”)

This time, with baby #2, I really knew everything we were experiencing in the tough newborn stage was only temporary and I tried with all my might to enjoy every phase because it really is the last time I will get to experience it. I soaked in maternity leave. I soaked in the time we spent nursing and getting up together in the middle of the night. I soaked in snuggling him in his little wrap carrier and made it my mission to make sure he said mama first! (I succeeded).

Having cancer, I thought maybe took some of that away because I found myself wishing for time to go by faster, but JR reminded me that if anything, it taught me to slow down and enjoy the now.

I have enjoyed the now. I’ve looked at those little baby fingers and toes longer than I had before and somehow my patience has grown despite being crabbier in my older age. 🤣

I’ve learned to try and live in the moment. I’ve learned a new set of priorities… and to be honest, I like this priority list much better than what it used to look like. I’ve learned to reduce my stress over things I cannot control and have spent a lot of time trying to figure out what God’s plan is for me. For Beau. For us as a family.

When Beau got diagnosed with Neurofibromatosis our hearts were shattered. We learned to pick up the pieces and move forward. We did it again when I got diagnosed with cancer. Both diagnosises were earth shattering and downright hard but we got through with the prayers to god and hugs from our family and friends.

I have been praying, trying to figure out the lesson that god is trying to teach us. Praying to figure out what we can do with all of these “challenges” and how we can turn our stories and our experiences into something good.

Something has really been weighing on my mind and I’m working to figure out the logistics. My goal for 2022 is to launch a scholarship fund targeted for youths with NF seeking higher education/trade schools. Many don’t know that NF can cause a broad range of learning disabilities and I want to support the goals and dreams of these youths as they navigate into adulthood.

I’m pretty excited to hit the ground running in 2022, forming this charity and helping others in the process!

A friend of mine, and her daughter, helped me come up the with the name!

No Beau-ndries

NFund

This is definitely giving me something big to look forward to and something to put my mind into planning and list making! Wahoo my favorite!

In other news, I have been going stir crazy. Legit losing my mind in my house. Tinleigh and JR pushed me to get outside today and we went ice skating followed by the making of our traditional sugar cookies… which always ends with Tinleigh eating them and me finishing the icing by myself.

I gave up after burning the last dozen. (It wouldn’t be Nichole cooking without something being burnt.) JR says he will finish the icing. What a man! 🤩

July 14, 2022 0

11/30/21 Did Someone Say… Jello Shots?

Round 1 of the red devil is over!!!!!

My anxiety was on 10 but having my best friend with me to get treatment made all the difference in the world! Also, one of my favorite nurses got to actually give me the “red devil” chemo which is a manual injection! It helped having familiar faces to joke and laugh through the 10 minute (give or take) of getting essentially what looks like a bright red Jell-O shot in a syringe going straight into your main vein!

I kept telling myself how much it looked like a big ole Jell-O shot that you get in a syringe on Halloween and somehow, that seemed to make it better! Now, if only it was cherry flavored and filled with vodka poison instead of fungus or chemical poison. 😂😂

I was super concerned about nausea. I hate being nauseous but honestly, I skated by this past week with very minimal nausea! I stayed on top of the meds that treat that as directed by the doctor and to be quite honest, besides being kind of tired, I have felt pretty decent! I have even rode the peloton the last 3 days!!!!

Yesterday, I went for a checkup and the nurse practitioner was very happy with how I did! To be honest, I am really happy with how I did! I got a blood check and unfortunately, the red devil completely tanked my neutrophils and WBC. Your neutrophils are supposed to be at minimum 1.5. A few weeks ago, mine tanked to .68 but this time it was .1.

Point 1. My body has literally nothing in it to fight infection… so back on the oral antibiotics I go. Fingers crossed the Neulasta injection I got a week ago starts helping this bone marrow produce!

Baby Beau turns 1 on 12/14 and my next chemo infusion is 12/13. I get a wonderful break from chemo for a couple weeks but that means my Neutrophils will likely be shot for the weekend of 12/18 which is when we planned baby Beau’s birthday party. Thus, we made the decision to cancel. 😩

I’m pretty bummed about that but I’m still ordering cake and we’re still celebrating his birthday as a family with a zoom call! One cake for Beau, one cake for me. Just kidding!! I’ll share!

Prayer requests:

1. Pray that these Petri dish kids don’t get me sick!

2. Pray that my bone marrow kicks it into high drive!

3. Please pray that I continue to do well on one of the harshest chemo drugs on the market!

July 14, 2022 0

11/16/21 The Devil is in the Details

I have completed all 12 weekly doses of my chemotherapy regimen! 🙌🏼🙌🏼🙌🏼

The last four doses proved to be a bit harder than the first 8. I got a fever and flu like symptoms after each infusion the last four rounds. My WBC and neutrophils tanked and I was at high risk for infection. Luckily, some extremely intelligent people in this world invented shots that boost your bone marrow production! I received six Zarxio shots over the last two weeks and it has helped bring my neutrophils and WBC back up into the normal range! I am so thankful for modern medicine! Having these shots have allowed me the ability to resume my motherly duties and snuggle baby Beau this past weekend when he was home sick.

I bought a Thankful Turkey and my family and I have been writing every night what we are thankful for! We are thankful for each other, thankful for my wonderful nurses and doctors, and so much more! This year, it feels like the holidays are so much more meaningful. In the past, I truly hated the holidays. I hated the underlying pressure to attend every family function, the pressure to visit four sets of parents, the stress of working around everyone’s schedules…it literally has always put me over the edge. Anything that typically gets me out of my “routine” stresses me out.. and the holidays absolutely do that.
I decided that our family needed some extra cheer this year so I put our Christmas tree up the first weekend in November. I cried the entire time because I couldn’t stop thinking about the kids on Christmas morning and how I want to make sure I am here for many more Christmas holidays in the future. The fact of the matter is, even though my prognosis is good, we still are not guaranteed tomorrow. So, I decided to be less of a Scrooge this year, take deep breaths, get out of my comfort zone, and try to attend as many family functions as possible.. and make as many memories as possible!

Since I finished the first half of my treatment plan, I got new scans to check the status of the cancer. The mammogram showed no masses and the ultrasound showed that the mass went down to 1.5 cm from 3cm AND it did not have any vascularity! The sonographer thought it may even just be scar tissue! I guess we will know for sure when I go for surgery but that was all great news! The chemotherapy is working!!!!! On Monday, I start the second half of my chemo regimen which will hopefully kill any and all remaining cancer cells floating around my body. It’s called the red devil because of its bright red color and toxicity. 🤯 Today, someone said, “well the devil is in the details” and I thought about how fitting that phrase is! This chemotherapy has an important job to find all the remaining cancer cells and kill them. So, praying that this red devil pays attention to the details and kills every.single.cancer.cell remaining!
Prayer requests: 1. Pray that my body tolerates my next chemo regimen.2. Pray that the chemo regimen does it’s job and kills all remaining cancer cells.

July 14, 2022 0