I get weekly bloodwork at my oncologist office to monitor my body since I am on the drug, Verzenio. That drug can cause a number of issues, including a decrease in important blood counts and impairment of the kidneys and liver. So the bloodwork shows me how my body is doing with it, as well as if my white counts are too low to be around other people safely. Once per month during my bloodwork my oncologist checks my CA 15-3 marker and my CA 27-29 marker.
Cancer antigen 15-3 (CA15-3) is a protein made by a variety of cells,
particularly breast cancer cells. The protein moves into the blood,
where it can be measured. CA15-3 levels are higher than normal in
most women with breast cancer that has spread to other parts of the body (like mine). The CA 27-29 marker, like CA 15-3, is used to follow the course of treatment in women with metastatic breast cancer. Like the CA-15-3 marker, generally, the higher the CA 27-29 level, the more advanced the breast cancer or larger the tumor burden. We want both of these marker numbers to come down, which likely would mean my tumor burden is going down. You may recall that last month my CA 15-3 went from to 88.1 to 87.6 and my CA 27-29 went from 97.9 to 94. I've read that sometimes when you start treatment, your markers even may rise a bit. Also, my oncologist expects my markers to come down slowly, since my cancer has a slower proliferation rate. Well, I was ECSTATIC to discover both markers came down even more this month! My CA 15-3 went down from 87.6 to 69.9! My CA 27-29 went from 94 to 81.6 I still have quite a ways to go to be in the normal range, but I was on cloud nine this weekend with joy over these numbers!! To God be the Glory, GREAT things He has done! In the charts below you can see the monthly numbers since June (since stage IV metastatic cancer was discovered), as well as the first blood draw I had back in 2012 when I first was diagnosed with cancer (stage 3c).
Other than that, it looks my platelet count took a bit of a dive, which is probably due to taking Verzenio (although I am on the very lowest dose possible of that drug). In addition, they told me to be careful and not to be around anyone sick due to my neutrophil count being low (although, last week it wasn't as low as the previous week.)
I am trying to keep cancer in the very back of my mind--I really don't want to think about it and just want to go about normal life. Going to the oncologist office each week and taking all the supplements, treatments and the two drugs also serves as a daily reminder unfortunately. But, we have a lot of normal life happening most days that makes it pretty easy to forget about the cancer. I try to tell myself as often as I remember that, "I am healed and I am well!"
In April 2020 we had a BIG trip planned that got cancelled due to Covid. We re-booked it for October of 2020 hoping that we would be able to go, but it got cancelled AGAIN! We have been waiting until restrictions let up where we were planning to go before we booked again. Well, the third time is hopefully the charm and we are planning to go again next month. We are praying that there are absolutely no issues this time with the trip and we can have some good family time there together. In addition, there is so much education for the kids that is happening leading up to this trip and I know that will happen on the trip. We are SO looking forward to it.
We continue to desire your prayers. We've seen God continue to answer our prayers. Thank you for continuing to be our prayer partners.
Please pray that my cancer goes away for good.
Please pray that my body handles the treatments and supplements well. Last week I got pretty sick during my high dose vitamin C infusion, so I hope that was a one time thing. Please pray that all my blood counts normalize--especially as flu season is upon us.
Please pray that all the details get worked out with our upcoming trip and there are absolutely no issues getting there or getting around there. We would love to have this normal time as a family to completely get away and enjoy each other without issues and without having to deal with cancer stuff, even if for just a bit. Also, we would love prayers that we can find someone to watch our sweet little precious dog Minnie while we are gone. She is so little and loves her cuddles, so we really don't want to leave her somewhere where she is in a kennel all day or is around a lot of big dogs.
I'll end this post with a few recent photos from our "normal life".
On Tuesday I had a monthly follow-up appointment with my oncologist and some bloodwork. I had been off of Verzenio since a little before our California trip and they said not to resume until my meeting with my local oncologist. I brought all my questions as follow-up from the City of Hope in California visit. Here are the questions I had and my oncologist's responses:
The number one thing the oncologist in California wanted me to do is get a hematologic evaluation. He said I needed this to find out why my white blood counts plummet any time I take harsh cancer drugs. In 2012 I had to stop chemo after 2 of the 4 treatments due to my body not being able to handle the treatment (again, I look at this as a blessing based on what I know now). With Verzenio, my white blood count and neutrophils tanks after just two pills spread days apart. My local oncologist, Dr. H., replied that everyone metabolizes drugs differently. For me, maybe the lower dosage is just fine. Maybe my body metabolizes the drug quickly and I have a lot of excess, which cause the terrible side effects on my immune system. She doesn't feel that having the blood analysis will tell us anything. After all, I had a bone marrow biopsy in 2014 and it didn't tell us anything regarding that. And off of Verzenio, my blood is pretty normal (my white counts have always been low since chemo--probably due to chemo, but my neutrophil count is in normal range off of Verzenio). She said any treatment for issues like I have with my counts dropping involve taking massive doses of steroids (which this is actually what the City of Hope doctor mentioned). Dr. H said obviously we don't want to do that, because that lowers my immune system and leaves me open for all sorts of illnesses. So, the plan now is to go back on Verzenio at a low dose (50 mg, twice a day).
The 2nd thing the City of Hope (COH) doctor said I needed was an MRI of my liver and bones. He said I needed a baseline so I know more details on the extent of my cancer. Dr. H actually disagreed with this. She said, first, it's hard to do an MRI of your whole body, which is what would be needed since the cancer is in my bones from my neck to my toes. Second, the PET actually shows more detail of the cancer in the bones than an MRI would. If she would do anything, it would be an X-ray on an area of concern where I was having pain. And for the liver, she doesn't want to do an MRI unless I start having issues with my liver. She said that none of these imaging studies would change my treatment. I told her that the COH doctor didn't want me to even jump until I knew more details on the cancer in my bones, for fear of fracture. Dr. H was fine with me doing whatever workouts I wanted, paying attention to any pain I have (and obviously avoiding exercises that cause pain.
I asked Dr. H about measuring my cell free DNA. She said there is a slow turn around time of that of 3-4 weeks. Plus, I actually had a liquid biopsy in June and it showed a do not have a lot of circulating tumor cells in my blood. (I look at that as a really good thing!)
And on that subject, I mentioned to Dr. H that the COH doctor said my cancer had a very low proliferation rate. This means it is slow growing. It also makes it difficult to track. I asked Dr. H how long she thinks my cancer has been there. Her response was that it's been growing since 2012. My last PET scan was February 2013. :-) That is why it is so important for me to stay on track with my diet, exercise, supplementation for deficiencies, manage stress, etc. Cancer is quiet.....until it's not.
I asked her about my tumor markers. In July, one marker went slightly up and one slightly down. She said she expects these to be very slow changing. If my cancer is slow growing, it will likely, in her opinion, be slowly responding. My blood test from Tuesday (I just got the results this morning) show both of my markers going down even more. Nothing drastic, but they are moving in the right direction. CA 15-3 went from to 88.1 to 87.6 and my CA 27-29 went from 97.9 to 94 (in June it was 103.4 and in 9/2012 it was 34.1 for reference).
So now, I am still focusing on prayer, nutrition, working out, de-stressing, self-care, and supplementation, and alternative treatments to kill this cancer. We are going about normal life otherwise. I will say, doing all that I am trying to do is very difficult--finding time for it all while also doing all of our activities, homeschooling and planning for the groups I lead, and doing just normal daily life like grocery shopping, laundry, figuring out meal plans, etc. But I have to be focused on healing this--BELIEVING GOD is healing me, while also putting in the work I need to put in.
Fun (non-cancer) Stuff:
As kids are headed "back to school" I love seeing all the kids' photos each year. It's such an exciting time for everyone! We homeschool year-round (except our summer schedule is much lighter and we don't have our usual activities, so it is nice and laid back.) But, our activities are starting back up and the kids are excited. I like to document once a year what our kids are up to in school and activities, for memories sake. I lost count of what year of homeschooling it is for us, but we started from the very beginning.
Luke is 12 years old (almost 13). Based on his age, he would be a 7th grader in traditional school. Luke loves engineering and making things (he still enjoys legos), is fascinated with computers and entrepreneurship, loves playing sports (his favorites are basketball and football) and being active outdoors, and enjoys music and playing piano. His favorite subject is math. Being a 7th grader, he is starting attending all of the youth group things at church and he is so excited about it. We love watching his friendships at church grow as well as his love for the Lord. It's an exciting time.
Abbey is 10 years old. She would be in 5th grade based on her age in traditional school. Abbey enjoys arts and crafts and being creative by making stop motion movies with her stuffed animals and American Girl dolls. She loves singing, playing piano and musical theater. She also enjoys nature and playing basketball. Her favorite subject is also math.
Our curriculum this year includes the following: Life of Fred Math (Advanced Algebra and Geometry), Story of the World Volume 3 for History with a group of friends, Zoology 2 (swimming creatures) with our science group, IEW Bible Based Writing Lessons, IEW Fix-It Grammar, Theater Class at ODA (Abbey), Engineering Class (Luke), Software Coding (with different books and programs), Spanish. We may also add in some fun Texas History with trips to the Bullock Museum. The kids plan on joining the Austin Royals (homeschool basketball organization) for basketball this year , and the kids also continue their piano lessons. We are exciting about another great school year!
Prayer Requests:
That I figure out how to manage everything I need to do in order to kill this cancer. There are so many "to dos" every day between supplements taken at different times all throughout the day, medications, juicing, eating enough, working out, getting my alternative treatments in, meditation, sitting in the sunshine, meal-planning, cooking the meals I have planned---in addition to regular daily activities. I don't want all the things I am trying to do to kill my cancer to cause me stress--I'm supposed to be reducing my stress.
That the cancer continues to die!
There are a couple of supplements that may interfere with Verzenio. I have gotten conflicting information on whether it is okay to take those. I need prayers for direction on this, because these are supplements that I have read a lot about that I know do good things for me.
I have been having some hip pain. I would love prayers that I figure out if it's something I need to follow up on.
And lastly, that I don't have negative side effects from the treatment that I am on.
Last week Drew and I headed to the Los Angeles area to visit City of Hope Cancer Center. Drew's work offers an awesome benefit which let us get a free second opinion on my cancer treatment at the City of Hope Cancer center in California. They covered our flights, hotel and meals! So, we figured it wouldn't hurt to get a second opinion and also enjoy some LA area sites and weather. We had three different appointments on Friday: with an oncologist, a nutritionist and an integrative oncologist. My favorite visits were with the oncologist and the nutritionist. The oncologist, who has been in practice for specifically breast cancer for over 40 years, had obviously taken a lot of time to review all of my previous labwork, imaging studies and other medical records before the appointment. He spent over an hour and a half with me and was concerned about what my bloodwork does every time I take the Verzenio medication. He noticed the same thing back in 2012 when I was getting chemo. And the significant dip in my bloodwork was the reason that we had to stop that chemo after only 2 of the 4 treatments in 2012 (which I think was actually a blessing, because it was very damaging to my body). He thinks I need a hematologic evaluation to see if there is something else going on in my blood--maybe something autoimmune related? Also, he thinks I should have an MRI as a baseline so I could tell the level of cancer in my bones. The PET scan doesn't really show much detail as far as cancer in the bones are concerned. In the meantime, he recommends that I don't do any jumping for fear of fractures since the cancer is in my bones. He wants to chat with my oncologist here, which I appreciate. In order to do the hematologic evaluation, I need to be off Verzenio, so I stopped taking that last week. Lastly, he also wants me to have some Cell-Free DNA (cfDNA) testing, which acts as a liquid biopsy. You can read about that here. I have an appointment with my local oncologist on Tuesday to discuss everything. In the meantime, I am still pushing through all the stuff I am trying to do to naturally boost my immune system. I am feeling really well.
Drew and I really enjoyed our special time away--even if it was just for a few days. We spent all of the time (except when we were eating) outdoors. And there were a plethora of organic vegan restaurants wherever we visited! There wasn't a single meal we didn't thoroughly enjoy. Everything was absolutely delicious and eating at all the restaurants definitely inspired us for other meal ideas besides the ones we have been doing all these years.
This was one of my favorites. It was a completely organic vegan lasagna and caesar salad. Drew's selection were the enchiladas. Both were so yummy!! It was actually the best lasagna I have ever eaten and the bolognese sauce was actually made out of organic soy. I always said I hated the texture of tofu, but all these restaurants have changed my mind. Also, the cheese was all made of cashew. I have always feared "vegan cheese" but these restaurants changed my opinion of that as well. Drew and I want to make some homemade cashew cheese now.
We flew out of the Houston airport, so that the kids could stay with their grandparents there. Mimi and Papa had the best "camp" experience for the kids. Luke and Abbey
had so much fun and created some awesome memories with Mimi and Papa on
all their adventures. They visited Galveston, where they explored Moody
Gardens Aquarium, went to the beach, and did some shopping. They
visited a natural history museum where they explored geodes, mummies and
more. And they had a fun water day
where they went to a water park in the morning and also swam in their
Aunt Erica and Uncle Andy and family's pool at their new house in the
afternoon. The kids got to eat at fun restaurants and enjoy Mimi's
delicious cooking as well. They played tons of games, including a lot
of card games, with Mimi and Papa, and even their cousins, Audrey and
Lauren. Abbey and Mimi made a fun craft together (a photo frame they
painted and decorated with shells--we plan on putting a photo of Luke
and Abbey at the aquarium in it). Mimi and Papa captured some photos of
some of their adventures, which I am posting for memories' sake. What a blessing it was for the kids to attend "Mimi and Papa" camp--memories the kids will cherish for a lifetime! Here are some photos.
First, I apologize for the delay in writing a blog post. I have been very busy figuring things out and there wasn’t really a whole lot of news. The lack of time has been the main reason though. Because it has been a while and we have been busy (so there’s a lot to write), feel free to scroll down to the very bottom if you want to get straight to prayer requests. :-)
Life Stuff:
Luke has just finished up a summer basketball season. It was a Friday night games only league for 11-12 year old boys with no practices (although we found out one team had practices twice a week under the radar). It was so much fun and a great way to get out of the heat and get some exercise (for Luke) and entertainment (for the fans). Luke also got to play alongside a friend (Brayden) and Drew coached alongside a friend (Brayden's dad). Their team, the Hurricanes (a team name they were just assigned and did not pick), ended up undefeated for the season. I absolutely loved their team, which was made of a bunch of really good boys---both character-wise, and hustle-wise (and even skill-wise). Watching these boys play was a joy and there was definitely some talent on that team. I snapped a few videos of Luke playing during each game with my phone. But, to be honest, the games were so much fun to watch and I had my phone set down most of the time so I could watch. I tried to put together a little highlight video for Luke from the 8-game season. Sharing here so I remember he did actually play in a league this summer. I'm sad that the picture below is the only one I took all season. As a few of his teammates were walking out after the last game, we grabbed them for a quick photo. There were 10 players, so sadly we are missing many from this photo. Here is the video link: https://youtu.be/wR9JGCPCAsg
Abbey just recently finished up a fun musical theater church camp, that she said was practically like a full time job. She auditioned in May and got a role of one of the main characters. She practiced her lines and music at home before their first meetup. The main characters met up the week before camp for rehearsals. Then, the camp ran from 9am to 5pm every day for the following week, with the performance taking place on Friday night. Abbey was so adorable, as she played Dolly Parton’s “9 to 5” song every morning on the google home device while she got ready for the day. When she left for camp, she would tell us “goodbye” and say, “see you after work.” :-) I love that girl! She did so well during her performance and we were so proud of her. She absolutely LOVED the camp! Feel free to watch the musical with the video we took here: https://youtu.be/OziXd_HZGjc (Abbey was the character named “Emma”.) The church made a professional video and will hopefully post it soon and then I can swap our video link out.
This week, the kids are attending their first sleep-away church camp. It is a preteen camp for kids who have completed 4th-6th grade, which means both of our kids could go together. I wanted them to be together for their first sleep away camp, so it seemed to work out well this year. And, I have a huge to-do list and am crossing off so much of it this week. That’s why you are getting this blog post! :-) Here are some photos so far from their camp week.
Here they are at our house just before we left to take them to the church
Here's our church crew about to load the bus
After we got there the kids let me snap one quick photo of them before they found their friends.
The church posted this photo from camp. Looks like they are having fun!
Another photo the church posted. I think Abbey is about to head up to the top of a water slide.
Then, next week, Drew and I travel to California for a second opinion on treatment. I will write all about that when we return.
If you want to see what else we were up to in July, here is one second from every day of our July: https://youtu.be/l9DlX4INnVY
Cancer stuff:
I’m feeling well and I finally got all my supplements into pill organizers. I was having trouble remembering what to take and when, so I have an organizer that is split between day and night.
I met with my oncologist a couple of Fridays ago. We didn’t talk about much other than she wants me to work my way up on dose for the Verzenio. Last week I took one 50mg pill each day and my neutrophil count actually was in the good range. So, this week, I am going to take one of those 50mg pills in the morning and one in the evening. (Remember, the dose she wants me to work up to is 150mg in the morning and 150 mg in the evening. So basically, 6 of the 50mg doses per day vs the two. We shall see.) She also told me she wants me to take Zometa for my bones. I need to get clearance from the dentist on that though and I am currently researching natural alternatives to that.) I knew the answer to the question, but I thought I would ask her anyway: I asked, “These drugs you have me on, the goal is just to stop the cancer from growing, not make it go away, correct?” She replied, “Even if I were to see a clear PET scan, you still have cancer, it will always be there. The goal is to treat it like a chronic disease–one you will have the rest of your life.”
My monthly labwork included my cancer markers. My CA 15-3 marker went up a little–it was 79.9 on 6/17/22 and was 88.1 on 7/22/22. My CA 27-29 marker actually went down a little. It was 103.4 on 6/17 and was 97.9 on 7/22. So what does this all even mean? In general, the higher the level of CA15-3 or CA 27-29 in the blood, the more cancer there is in the body. The levels are highest when breast cancer has spread to the bones, the liver or both. If the levels go down or return to normal, it may mean that treatment is working. If levels increase over time, it may mean that the cancer is not responding well to treatment, is still growing or is coming back (recurring). For reference, a CA 27-29 marker below 38 is normal. A CA 15-3 marker below 30 is normal. I am having these tests monthly, so I am curious to see what happens next month. I’ve read that inflammation, even that caused by cancer dying off, can cause those numbers to rise as well.
I recently met with a well-known oncology nutritionist that I first saw back in 2013. To show you how popular he is, in June I tried to schedule an appointment with him and was told his earliest available was October 18! But, I got at the top of their cancellation list due to my advanced stage cancer and they happened to have an opening a couple of weeks ago. It was a great appointment that helped to confirm many of the things I was already doing. He also told me, in his opinion, some things that weren’t necessary and then added a couple of recommended supplements.
I’m continuing to drink juices throughout the day that Drew makes in the morning. I LOVE them and I know they help. I am not quite ready to detail out exactly what I am doing nutritionally and the alternative therapies I have implemented, as I continue to modify based on how I feel and finances (for example, ideally I would do two high dose IV vitamin C treatments per week, but when they cost over $200/ treatment, that cost adds up really quickly. So for now, I am aiming for one treatment every other week and planning on using high dose liposomal vitamin C supplements on the other days.) Next month, I am hoping to do a whole post on what I am doing “naturally” to heal my body, as well as include scientific studies to show support for what I am doing. On that note, I had some infrared sauna time today and tomorrow I get a high dose vitamin C infusion (50G).
Like I mentioned before–I am feeling well. I work out each day and am trying to get plenty of calories. I haven’t gained weight nor do I continue to lose weight, but I am holding steady at 94-96 lbs each day. So to me, that is a good thing. In some areas, my bones feel better than they did a month ago (for example, in my ribs). In some areas I have slightly more pain (for example, I notice my right hip bone and sacrum pain when I work out or when sitting).
Prayer Requests:
That God continues to guide us in treatment decisions. That he will make it clear what treatments to use and what is unnecessary.
That God continues to heal my body—completely eradicating the cancer from my body and not allowing it ever to return.
That God provides safety for Drew and I while traveling next week for the second opinion and that He places a hedge of protection around our kids who will be in the care of their beloved Grandparents next week (they are super excited about that).
I just want to say again--THANK YOU to those who battle with us in prayer, those who read these little updates and care about us. We love you!
I leave you with a random photo from the weekend--the kids and I played "Spoons" and our dog, Minnie, really wanted to join in.
First off, if you are a Believer I ask that after you read this post, please say a quick prayer for me. I believe in the power of prayer and am so thankful for those who are praying for me. It means a lot!
What a week! I feel like this cancer thing has almost become a full time job. Between all the natural treatments, blood work, appointments, research, phone calls to doctors, potential treatment facilities, emails and more, it takes up so much of my day!! I have been trying to do some of my phone calls and research outside in the sun by our pool. It's so therapeutic! All throughout the day I'm still drinking my juices that Drew makes for me in the morning. I feel like those are helping me so much.
I feel like I am eating okay, although I definitely admit I should consume a lot more calories. Cancer itself uses a lot of energy and my metabolism at rest is increased due to the increased inflammation caused by my immune system fighting. So I definitely need more calories. I'm just trying to figure out how to get those calories. This morning I weighed 94.8 lbs. I really don't want to lose any more weight.
As far as conventional medicine, you may recall my oncologist wanted this first line of treatment to be the combination of exemestane (aromatase inhibitor) and Verzenio (CDK inhibitor). You may also recall back in 2012-2013, my body didn't handle medicine (and chemo) well. In fact, we had to stop early, not even completing their regimen, due to my immune system tanking. In hindsight, I believe it was a good thing to stop. I honestly wish I had taken a completely natural approach to cancer treatment at the beginning. But, in 2012 I didn't know what I know now. After all, it was my first time to go through something like that I never had cancer on my radar at such a young age. However, I also have to trust God's orchestration in all of it, because I did feel led at the time to do what we did, which ended up being a combination of allopathic medicine, with natural integrative approaches as I learned along the way. My regret for not going all natural has to do with the lifelong effects of that treatment that I still suffer with today, almost 10 years later. I just feel like it wasn't good for MY body. Anyway, all that just to say I was very concerned about taking the Verzenio from the start. I know my body very well and better than anyone else and I should have trusted my gut, which I also believe is often the Holy Spirit's guidance. This time, Drew had the same feeling about Verzenio as me--so it was probably definitely the Holy Spirit nudging us. The medication comes in 50mg, 100, mg, 150 mg and 200mg doses. The dosage for me was going to 2 pills of the 150 mg dose each day. To ease me into things, she was having me do one pill only on Monday, Wednesday and Friday. Last week was my first week. I decided to take the dose at night. So, on Monday night I took the dose. Not long after I became extremely nauseous and pretty much didn't sleep that night, as I awoke every hour feeling like I was going to vomit. The effect lasted a full 12 hours. I was so thankful when the effects went away and I started to feel more normal. I knew my next dose wasn't until Wednesday night, so I had a break and was able to get some sleep on Tuesday night. I just couldn't imagine following up with another dose when I awoke on Tuesday morning! On Wednesday I took my next dose (a little earlier in the evening, around 8:45p) and didn't even sleep a wink all night, although the nausea was not as bad. It was complete misery though. I suspect somehow the drug counteracts the effect of Melatonin on my body: if that is the case though, it would not be good as Melatonin has antiestrogenic and antioxidant properties and studies indicate it is recommended as a supplement for breast cancer (and other cancers) for that reason. I really need my sleep so my immune system can fight the cancer. On Friday morning I had blood work. I waited there for the results of at least the CBC part, so I would know where I stood before taking my next dose that evening. After all, we are doing the bloodwork weekly because of the Verzenio. It can cause some nasty side effects to Kidney function, liver function and immune system for some people. Y'all-it made my immune system tank! And that was just from two doses spread apart. Just for perspective, if it was 2012 when I was receiving chemo, they wouldn't have even given me chemo due to my weak immune system. My white blood count was low, my LY% high, my neutrophil count was low, and my platelets low. I haven't received the Kidney and Liver function results yet. But, based on those numbers the oncologist said she is going to lower the dose to 100 mg. Still, I don't know how I would be able to two of the 100 mg doses per day since one 150 mg pill/day on only two days caused those negative effects. The prescription won't be filled until Monday, and we have some time to pray about it more.
In the meantime, I found one local MD who will run the onconomics RGCC test on my blood. I have researched and absolutely love her approach. You can see her story here. At her naturopathic clinic I can also get many of the treatments I am wanting, like IV Ozone, high dose IV vitamin C (which I actually have already been getting elsewhere) IV Curcumin, and various testing. I found a great place to get Infrared Sauna treatments. In fact, I had one this morning and it was amazing!!! I am really looking forward to my next session. I will do another post at some point when I have more time about why I want to do certain treatments and how they are beneficial for my cancer eradication. I am still considering some alternative treatment facilities as well, but seeing what I can do locally in the meantime.
Abbey watching the fireworks on the 4th with friends at Dell Diamond. They were amazing fireworks!
On a very happy side note, we had such a wonderful 4th of July weekend at home. Also, Drew and I had a double date last weekend! Some good friends of ours suggested that we go grab some dinner while our kids, who are all old enough, responsible and the same age stay home and play some board games and watch a movie. It was amazing and life giving. What a wonderful distraction from everything going on--I felt so amazing after. And our children had a blast as well. Thanks for suggesting that Christy and inviting us!
Prayer Requests for this week:
1. That the Lord continues to make the perfect treatment plan path for me known.
2. That I am completely healed from this cancer.
3. That I can get good sleep and feel physically well so I can wake early and workout.
4. That I can figure out how to consume more food (the food that is good for cancer fighting). I don't want to lose any more weight.
Thanks so much prayer warriors! You are so greatly appreciated and loved!!!
Good afternoon friends and family! I started the day with a nice long walk on the trail behind our house, listening the entire time to God's word and praying. For those of you going through something similar, I highly recommend immersing yourself in God's word. While I walked I listened to this video: https://youtu.be/0gQILVCBH8k. It's basically just tons of healing scriptures read by John Hagee. I've also listened to these from "Soakstream" over the past couple of weeks, but honestly the guy's voice eventually starts to put me to sleep: https://youtu.be/Ig6EZ3P1vz4. So many verses stood out this morning on my walk. The first is in Proverbs 3. Starting in verse 5 "Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Most Christians know this verse and have it hidden in their hearts. But, the verses following those really got my attention this morning. Verses 7-8 say, "Do not be wise in your own eyes; Fear the Lord and depart from evil. It will be health to your flesh, And strength to your bones."
How I'm feeling:
My bones have been really aching lately. So, of course, that verse got my attention (more on God's word in a bit). It's strange to me that before my PET scan, I didn't necessarily feel many of the cancerous areas on my bones. But, since then, my bones have been aching randomly in the cancerous areas. Not all at once, but I will have pain in my sacrum, and then sharp pain in my hip....then later random rib pain. It feels like a toothache if you have ever had one of those---that deep throbbing awful pain. But, it usually doesn't last long. It comes and goes. I'm on probably too many Facebook groups related to my cancer and natural healing, trying to gather data from enough people to figure out what is working for them, as well as get others' experience of the drugs I am going to be on. One thing I have read is that when cancer is "dying off" you can get die off pains. I really pray that is what the pains are. Unfortunately, it sounds like you can feel those same pains when the cancer is growing. But, the good news is I see a lot of people talking about die off pain. It's interesting that I wasn't having this pain in all these areas before (just mainly had the pains in my legs, which is the area I didn't even get scanned.) So, these pains have been occurring since I have been on exemestane (the aromatase inhibitor), having a ton of people pray for me and have been adding new supplements, juicing and eating plant based. By eating plant-based, I'm removing a ton of inflammatory foods. Many of you know that back in 2012-2013 our family changed the way we ate, eliminating sugar and eating just real food (organic--and when eating meat we eat organic, pasture raised or if beef, grass-fed. If you look through old blog posts from 2013, you can read a lot about that journey.) Over the past year prior to my recent diagnosis, we ate more "treats" out, we ate out more in general, I started eating less and less veggies (although still a very healthy diet) and overall my diet was probably more inflammatory. And sometimes, I just didn't eat enough because I just got in a rut and didn't feel like eating (hello, cancer). I'm praying these changes to which God has directed me will help heal my body. I believe God alone can heal me through the prayers and total faith and belief in His healing, but I also believe that we should take the very best care of these bodies God has created--and if He reveals something to us that we should be doing to take the very best care of our bodies, then we should do it.
Other than the awful bone pain, my energy level has been great! Working out in the morning helps. I've been eating more---and everything I am eating is super nutritious. Drew is so awesome and really is the best husband ever! He spends time in the morning making my juices for the day. Right now the juice includes a TON of carrots, a green apple, ginger root, turmeric root, cabbage, romaine, and sometimes other greens like escarole, or chard. Sometimes for lunch I will eat a smoothie that has a tons of greens in it, as well as some berries. So I feel like the nutrition I am getting is definitely helping my energy level. Also, in my post last weekend I mentioned that my weight was dropping daily. I was hovering at 95/96 in the mornings. Well, I am happy to announce that at the beginning of the week my weight started creeping up slightly and I am no longer on the downward trend but holding pretty steady.
What am I doing for Treatment?
From the conventional side of things, I am still planning on trying my Oncologist's plan of the aromatase inhibitor plus the CDK inhibitor (brand Verzenio). I have actually been taking the aromatase inhibitor since mid June. Although, I will say that having the meeting with the oncology pharmacist this week scared me quite a bit about Verzenio. For example, she said I have to use gloves when I take it so I don't get it on my skin and then transfer it to someone else (since it can be absorbed through the skin). Also, I can't be in crowds and I can't be around anyone who is sick. I will be getting weekly bloodwork to make sure my kidneys and liver are doing okay on it and that my white blood cell counts and red blood cell counts are still okay. Basically, it seems this drug can potentially harm every part of my body and immune system. And I definitely need these things to fight the cancer. Oh, and they also gave me a ton of anti-diarrhea medications when they handed me the prescription. Thankfully, the doctor is easing me into it by doing half the dose and only three days this first week. But still, Drew and I have reservations about it and will continue to pray that God direct us to the right treatment. Drew's work offers an awesome benefit, which provides getting a second opinion at no cost to us. So, I have started the work to do that as well since it is of no cost to us. It never hurts to have several options. Also, I have appointments next week with Naturopathic doctors. A big difference in these docs and your traditional docs is that my traditional doc is trying to just get the cancer to be stable or go away to below detection levels. She doesn't care what I eat or drink and is not even trying to figure out what may have caused the cancer. There is no medication that kills cancer stem cells in the traditional oncology world (did you know there are proven natural substances that actually kill cancer stem cells see here, here, and here for example. The trick for me is figuring out proper amounts/dosages). A naturopathic doctor will try to discover the what may be going on in my body to cause inflammation. I imagine we will be doing testing for fungal infections, viruses, bacterial and parasitic infections and taking meds/supplements to rid my body of those. How can my immune system focus on ridding my body of cancer cells if it is tied up dealing with any of those things I just listed? In addition, I am trying to find a naturopath (I found several) that can do a RGCC (the greek test) on my blood. Their onconomics test will expose my blood sample to cancer treatments and natural therapies, recording how effective they are at targeting cancer cells. This will show me the therapies that have the greatest chance at killing the cancer. Based on my extensive research this week (I seriously feel like I am cramming for very important test), I have come up with a list of important supplements, I have figured out my diet plan moving forward, as well as some natural therapies I want to include (Ozone therapy, infrared sauna and hyperthermia, and IV infusions). I have been trying to decide whether I can do these things locally or will need to go somewhere for a few weeks to get an intensive treatment. I will have to post details about all this in a later post. Just know I have been in contact with a countless number of these types of natural treatment facilities and am even still waiting on one to review all of my reports and give me a recommendation of treatment.
How is the rest of the family doing?
This week we managed to squeeze in some fun family time, playing Mini Golf together, playing games, going on our normal evening walks, having some family swim time, having some friend time swimming, playing and going to the water park. Although the news was hard, we are going to try to keep things as normal as possible. This means we are still planning on homeschooling, doing our normal homeschool groups and co-ops, church, fun events, etc. I pray that if I start this new medication, I do not have any negative side effects. If my immune system gets too low, I imagine it may limit our ability to do certain things since I can't be around germs and risk getting sick.
Abbey at Monster Mini Golf this week.
The last hole at Monster Mini Golf
At Typhoon Texas on Friday
And here is one second from every day in June in our house...
Prayer requests for this week:
Please pray that God will guide us in treatment decisions--where to go and what to do
Please pray that I will have NO side effects from Verzenio.
Please continue to pray and BELIEVE in complete healing and eradication of all the cancer (and circulating cancer stem cells) in my body
Some other verses the Lord highlighted to me during my morning walk:
Mark 9:23: Jesus said unto them, "If you can believe, all things are possible to him that believes."
Psalm 118:8: It is better to trust in the Lord than to put confidence in man.
Matthew 13:58: And He did not many great works there because of their unbelief
And especially this one:
Psalm 118:17 I shall not die, but I shall live, and I will proclaim what the Lord has done!
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.
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