PET Scan results

I had my PET scan on 6/23/22 thanks to the awesome folks at ARA who squeezed me in.  The following morning, just after 8am, I received a call from my Oncologist's office letting me know she wanted to meet with me at 2pm.  Knowing she wanted to meet with me, we thought that it couldn't be great news, as they would have happily told us good news over the phone.  I ran to the computer to check the patient portal and saw that the PET scan report was already accessible in my account. Usually these results take a few days.  So, I called Drew into the office and we shut the door and reviewed it together.  Before seeing the report, I honestly felt in my gut that the cancer had spread to my bones, due to the symptoms I have been having this year.  We were a little surprised to see it in SO many places in my bones though.  There are many cancerous areas---in my ribs, sacrum, pelvis, hip, spine.  But, the PET only scanned from my nose to thighs.  Honestly, I feel it in my legs.  In addition to these places, the cancer is also in a couple of places in my liver, as well as some pleural space in my right lung area and in MANY lymph nodes below and above my diaphragm (even one by my heart).  Needless to say, we both were just in tears reading it.   

I have been feeling my body "deteriorating" over the past year, but I figured some of it was just attributed to "getting old."  Ha!  Now, I know there are other reasons I was feeling tired, less motivated to do things I used to love to do and why I have been losing weight I don't have to lose (I just haven't felt like eating much).

Anyway, after Drew made some super nutritious juice for me in the juicer and I got some nutrients in me, we decided it was time to sit the kids down and tell them what was going on.  We were completely honest with them, but also told them that God performs miracles still and we are going to attack this from every angle that we can.  We have so many people praying for healing, and God is leading us to the right treatment for me.  

At 1pm, I had a call with another alternative/integrative/natural healing center in Florida to discuss what they had to offer.  I have felt led to use a lot of natural therapies that I am constantly researching and finding science-based and results-based data to support.  I would love to go to a place early in my diagnosis to just give the cancer a huge knock-out punch with everything we've got.  It's crazy how expensive this stuff is since it isn't covered by insurance.  I mean, just for a ballpark we would be looking at an average of $45,000-50,000 at all the places I have contacted.  So, we are trying to decide if we can try to piece the stuff together at home for cheaper. I wish there was a place like this in the Austin area. 

At 2pm yesterday, we met with the oncologist.  We were pleasantly surprised that she was very hopeful and encouraged us greatly.  We reviewed the PET scan together (I can post the video link here in case anyone wants to see:  My PET Scan Walk through Video) and she told us that although it is in a LOT of places, it's not a ton of cancer in each of these places. It was encouraging watching the actual images vs reading the report. But, this is a systemic disease. So, for example, it doesn't make sense to go in a do surgery on my liver to pull out the cancer.  If the cancer is circulating through my system, it will just find another place to land.  She said the liver is a big, fluffy organ that cancer can easily make a home in. So, you attack the cancer systemically.  This is what I plan to do using conventional medicine (but not Chemo) and alternative medicine.  She still has the same recommendation as before:  Exemestane (aromatase inhibitor) and the target therapy drug Verzenio (a newly approved CDK inhibitor).  At the end of our appointment I asked her, "So, does this mean I'm not going to die from the cancer soon?  I mean does this look really bleak to you?"  She told us that she would expect this first line of treatment to work for a couple of years.  Then, you move to 2nd line.  And my genome testing will tell us even more when we get that back of other things that could help my specific cancer (which right now we know is 99% estrogen positive, 2% progesterone positive, and Her2- (but with 1+). Now, this is just from the conventional treatment side of things. One interesting thing is that the thing that originally brought me in and concerned--the right supraclavicular lymph node--actually didn't even show uptake on the PET.  So, I guess it left that lymph node after the biopsy.

I am still piecing together my alternative treatments.  When I get that all figured out, I will post here.  I feel that the natural treatments are key, as they will help my immune system do what is was created to do--get rid of those rogue cancer cells.  Whereas, the drugs I am prescribed from the conventional medicine side don't really help build my immune system--and in fact, can hinder it a bit. I am definitely feeling all the bone pains now, so I am hoping that as treatment continues, the bone pain goes away.

Thank you so much for your prayers!  We will continue to post updates here, as I have been overwhelmed with texts and have had difficulty responding due to being in so many appointments, phone calls, etc.  I am SO thankful though that so many people love us and care for us.  I just want to make sure I can update everyone, so this is definitely the best way.  I may also create a facebook group where I can post links to these just so we can have update notifications a little easier.  I am so thankful for everyone who is reading this and praying for us.  The prayers are most definitely felt and I know God can work wonders through our prayer.  I can't wait to share with you are next PET scan which may be in a few months, which will show death to the cancer tumors!!  Already praising God for the healing He is doing in me!

Prayer requests:

1.  That I can eat more and gain weight.  My weight has been creeping lower each day.  It's hovering around 95/96 in the mornings, for example.  I would like to get back up to 100 lbs.

2.  That the treatments work and cancer doesn't have a chance at survival in my body.  That my body is a terrible host for those cancer cells! Also, that I don't have terrible side effects and I am able to continue with the treaments for as long as possible. I currently have an itchy rash/hives all over my body and I hope it goes away quickly.  Wondering if it is my body detoxing from the pet scan or just with the change/increase in nutrients I am giving my body 

3.  That I can find the right mix of alternative treatment that can be sustainable long-term. 

4.  That God would make the path known on whether to go to an alternative treatment facility, and how and where to go.  Or, whether I should stay here and try to piece things together on my own.

I'll end with some happy.  Photos from Father's Day...we were so thankful to get to spend last weekend with Drew's awesome parents.

A Health Update on Heather

Hello friends!  First off, I am completely shocked to find out that this blogging platform still exists.  I stopped blogging long ago just because I used Facebook instead for so long, sort of using it as a journal for some of our family's memories together.  However, Facebook could honestly never really take the place of a blog post like this.  I mainly post photos on Facebook, and you don't really get to hear from my heart.  I have decided to pick back up blogging, to put my heart out there, ask for specific prayers, and keep a bunch of people updated all at once about what is going on with my health and our family.  

History reminder 

First off, I thought I would remind everyone a little about my cancer journey.  As you may remember, back in September 2012, I was diagnosed with stage 3C breast cancer.  I discovered it while breastfeeding Abbey, who was just a baby. I had a massive tumor that was practically my entire left breast, as well as cancer in my lymph nodes in the axillary (left armpit), supraclavicular (under my left clavicle) and sternum areas.  I combined conventional treatment (chemo and radiation and surgery) which practically killed me, along with a change in nutrition and supplements, etc.  After chemotherapy and before radiation I had surgery.  Pathology from my surgery showed that the cancer in my breast had greatly reduced to where it was basically DCIS, however, the cancer was still circulating through my lymph nodes.  I then proceeded with Radiation while taking more oral chemotherapy.  Since then, there have been no PET scans scheduled and I would only get scans if I had some strange new symptom.   But, I have been so thankful to God for healing me and keeping it at bay all these years. It's been almost 10 years since I was first diagnosed!

This photo above was taken in 2012, just before my original diagnosis.  Abbey was a baby and Luke was 2 years old.

What's going on today?

Fast forward to today.  Over the past year, strange symptoms have been popping up and I have been very suspicious of it being cancer rearing it's ugly head.  I won't share all my symptoms here, but when I absolutely knew in my gut it was cancer was when I discovered a very hard, immovable lymph node on my right side supraclavicular area.  I had a chest and neck CT scan 6/3/22, and the report basically just stated that I had no enlarged masses or lymph nodes in my neck.  There were some tiny pulmonary nodules in my lungs, but my oncologist didn't seem too concerned about those because of their size.  Although it had shrunk, the lymph node was clearly there--hard and immovable, so we had a biopsy on 6/15/22.  I was told it would probably be a few days before I would have the results. I received a phone call from my Oncologist's office the following afternoon, letting us know that my oncologist wanted to meet with us that evening.  We knew then it wasn't good. It turns out it is breast cancer that has metastasized.  Metastatic breast cancer — also called stage IV — is breast cancer that has spread to another part of the body, most commonly the bones, lungs, brain, or liver.  Metastatic breast cancer is made up of cells from the original tumor that developed in the breast. So if breast cancer spreads to the bone, the metastatic tumor in the bone is made up of breast cancer cells, not bone cancer cells.  While it has been extremely difficult to process and think about, right now we are still sort of in "figure it out" mode.  I have had tons of bloodwork, I am awaiting the results of many tests on the biopsy, so we can learn more about the cancer, and I am awaiting a PET scan to be scheduled and completed.  The PET scan will show us where all the cancer is.  I am constantly at battle in my mind to put away negative fearful thoughts of where the cancer may be.

How I am feeling

Physically, I have definitely been feeling tired and have many painful areas on my bones.  My breathing is not the same when I exert my body.  I hadn't worked out since May 10, because I had so much pain and was told by my allergy/asthma doctor not to work out until my asthma was under control.  Monday and Tuesday morning I worked out this week, not pushing my body too much, but it helped me in an immense way.  I am someone who NEEDS to workout---for my physical and mental health.  I had WAY more energy throughout the whole day thanks to that workout. Mentally, this is just a tough diagnosis to receive.  If you start googling, you see very sad statistics on survival and the data on many treatments discuss their effectiveness in terms of months. I can't help but think about the possibility of leaving my sweet kids, who I homeschool, and awesome husband alone. 

 Treatment Discussions

I know my body struggled to handle chemo last time around, and there is no chemo that has shown to be successful at curing a patient of metastatic breast cancer. So most patients move from one chemo drug to another, until they eventually die from the disease.  I am not planning at this point to use harsh chemo drugs. However, I am determined, through God's guidance, to try to figure out what is going on in my body and find the right treatment plan for me.  I am open to reviewing treatment options my oncologist recommends, but will most definitely do a risk/benefit analysis to determine if the benefit is worth the risk/damage it will do to my body.  I am currently taking an aromatase inhibitor, since it appears the cancer is still hormone receptor positive, and researching a target therapy drug that they want me to take (the full price of this drug is $13,700 y'all for a 28 day supply). The drug was just FDA approved last year and according to their very new data, it helps delay progression of the disease by 6 months vs. using the aromatase inhibitor alone.  Their website indicates that they have no data to indicate whether it helps at all with survival. All that for a very high chance of terrible diarrhea (which means also taking an anti-diarrhea drug) and very low white blood counts and neutrophil counts (hello, I kind of need those for my immune system to fight the cancer). Right now while we wait on my PET scan results (my PET scan is scheduled for 6/23), I am doing a completely plant based diet with a ton of juicing, as well as adding some new supplements to my regimen.  I also did a high dose Vitamin C infusion a couple of weeks ago and imagine that will be a part of my life for the rest of my life.  I am reading stories of people who healed their cancer naturally and focusing on applying the commonalities between all of these success stories.  That and of course placing my faith in God.  I know that God still performs miracles.  I must BELIEVE He can heal me.  But, also I know that if He doesn't, He is still good and sovereign.  I don't want to focus on the "if he doesn't" part right now. I am only praying for complete healing.

How to pray for me

If you pray for me, please pray that God will take all the cancer out of my body for good.  Please pray that He will guide me on what treatment He wants me to incorporate to heal my body.  I want to be around for a LONG time. 

Up until now I have only told some family about it, our church bible fellowship group and a few friends that I have happened to see over the past few weeks.  I am so thankful that so many are praying for me already, and it has been difficult to respond to the texts and email in between all the phone calls I am making to try to schedule appointments and tests and discuss results, etc.  So, I figured I would just provide detailed updates using our old blog.  Check back for updates, as I will post my PET scan results hopefully in a few days.

One Second from every Day in December

Here is one second from every day in December.  Enjoy!

It's Beginning to Look a Lot Like Christmas--2018 Georgetown Stroll

It's an annual tradition for our family to attend the Georgetown Stroll each December.  It's a wonderful way to welcome the Christmas season.  Usually we attend the parade on Saturday morning, followed by a visit to the stroll. However, this year we decided to attend after the Big 12 Championship Game (which was extra big this year since a lot was on the line for Oklahoma).  We were extremely excited that Oklahoma was able to avenge their one loss of the year to Texas.  After we watched OU win (Boomer Sooner!) we headed to the stroll. 

Surprisingly, the line wasn't too long for this HUGE inflatable slide.  So after our meal at the new Georgetown location of Greenhouse craft food, we stood in line for the slide.

Apparently it wasn't quite exciting enough for Luke, so he decided to add a big jump at the end.

Luke was excited to play these inflatable sports games, which happened to have no line!

Look how close he came to threading the needle with that football!

The kids enjoyed designing ornaments for free.

Abbey said "Hello" to the Texas Stars Hockey mascot.

And she said "hi" to a HUGE nutcracker.

 Our favorite part of the Georgetown Stroll each year is the Bethlehem Village.  A local church transforms this part of the stroll into a village that was similar to Bethlehem, where Jesus was born.  There is even a live nativity, with real animals. 

Learning about how they dyed fabrics back then.

Learning how they turned wheatberries into flour.

grinding the wheat.

getting some snacks at the market.

This part of the village is so precious.  The sweet volunteers make a "baby Jesus" doll while telling the children about the story of Jesus.

After watching the live nativity, we headed out of the Bethlehem village and wasted no time getting to the Home Depot tent.  Abbey was extremely excited about this and had been talking about it since the second she saw a child wearing the Home Depot apron shortly after we arrived to the stroll.  They let the kids choose from several different projects.  Luke chose to make an airplane and Abbey chose to build a race car.   Luke was excited to do the whole thing on his own with no assistance.   

The finished product.

It was fun to be there while the sun set--we got to see all the beautiful lights come on.

Drew grabbed the camera and got a photo of me--to prove I do exist.

Family selfie under the twinkly lights.

Urban Adventures: Metrorail, Google Event and Gingerbread Village

After I found out that Austin Capital Metrorail was letting kids (grades K-12 and younger) ride for free through 12/10/18 I knew it was time for a little urban adventure with the kids.  I was already planning on taking the kids to a Google Pixel 3 event, called Sights of Sound, that was located downtown.  And when I saw that the event was a short walk from the downtown metrorail station, it was a no-brainer to use the metrorail as our transportation to the event.  Because adventures are more fun with friends, we invited some to join us.

We met at the Howard Land Metrorail Station and took the 9:55 train.  

It was a very pleasant ride and we got to enjoy all the fall foliage through the big windows as we made our way downtown.  Austin sure is looking beautiful right now!

We arrived downtown around 10:30 and walked over to the google event.  At this event we were each (even the kids) given Google Pixel 3's and invited to explore four different rooms, each inspired by a musician. The rooms were unlocked using the phone and the spaces were great for putting Pixel 3's  camera features into action.  The immersive rooms featured: Ella Mai’s Inner Reflections, Future’s Trap Mansion, J Balvin’s Reggaeton World and Marshmello’s Happier Place (our favorite).  Here are some photos from the event:

Abbey got to "unlock" the Marshmello--Happier room by answering the question about who collaborated with the band on the song.  She answered the question by pulling on a string under the "Bastille" balloon.  Once she did, it released confetti everywhere and the song, "Happier" began playing loudly.  It was so fun! The room even had a trampoline in it. 

 

At the end of the event, we were each given the opportunity to play a bear claw game until we were able to capture a ball containing a prize card inside.  The prize card inside indicated whether we won a t-shirt or a Pixel 3 phone.  We all won t-shirts.

After the Google event, we walked over to the Fareground for lunch.  The Fareground is Austin's first food hall, which opened last year.  The marketplace hosts an "eclectic collection of cuisine from six premier local vendors, all openly seated to inspire culinary innovation and community building." (from their website).  It's great for kids because there are so many different options to enjoy.   Although, I will admit it can be a bit pricy.  If you are careful though, you can get away with not spending too much.  The kids tacos at Dai Due are almost the same size as the adult size and cost $3.  Abbey likes the Kolache ($4) at Henbit.  I usually enjoy the Ramen at Ni-Kome.  After lunch we walked over to the gingerbread village at the Four Seasons Hotel.  The Four Seasons has this display each year and sells the houses to benefit a local non-profit.  This year, the money will go to People'e Community Clinic.  The village has a theme of "white Christmas and features 11 traditional-meets-modern houses named after some of Austin’s most historic neighborhoods.  From their website: "The 100 percent-edible Village will be centred around a house that resembles the architecture of City Hall, with surrounding houses featuring exposed gingerbread and white frosting accents. According to Executive Pastry Chef Amanda Pallagi-Naim, the design and colour scheme was inspired by the Hotel’s newly renovated Lobby, which features a similar mix of classic and contemporary design elements.  In addition to the houses, Pallagi-Naim and her team create d three accessories, ranging from a vibrant ATX sign – the only colorful item in the entire Village – to a construction crane that represents the growth of the city."

After looking at the village, we headed out to the back lawn of the Four Seasons.  No visit to the hotel is complete without doing that.  Their lawn is gorgeous and has so many things for the kids to enjoy.  The Austin hike and bike trail runs right behind the lawn, as well as Ladybird Lake.  The colors of fall are just gorgeous right now and lined the lake.  Us moms enjoyed sitting in the sun while the kids rolled down the hills, played lawn Jenga and sat on the huge hammock.

It was time to head back to the train station to catch the 1:55 train.  We began our walk back on the lovely trail.  We love this statue along the trail--it's made of tons of metal bikes.

I always smile at these bike racks outside the convention center.

 Time to head back home.  What a wonderful adventure with friends!

One Second from Every Day in October 2018

Here's One Second from Every Day in October 2018.  Enjoy!

One Second from Every Day in September 2018

Here's one second from every day in September 2018. Enjoy!