December Updates, including PET Scan results

Italy, Holidays and a Pet Scan, oh my!! It's been so long since my last post, because life has been extremely busy in our house. First, we had an amazing adventure in Italy at the beginning of October, traveling to Rome, Florence, Cinque Terre, Milan and Venice. The kids studied all about ancient Rome, Michelangelo, Leonardo and more before our trip.  It was a pretty awesome field trip, seeing in person all of the things, the remnants of history and art we had learned about.

When we returned, life seemed to speed up even more as we squeezed in all our regular activities, like basketball practice, field trips, history co-op and science group, as well as piano lessons, theater and choir.  Then, we had Halloween and all the fun fall activities that surround that.

 

And since then we've traveled to Oklahoma, played lots of basketball, Abbey performed in two plays and began the Christmas season and all the fun that's involved with that.

Abbey broke her wrist last week, so she will miss playing basketball for 4 weeks.  But, Luke had a tournament this weekend and they were named champions of their division.

This week has included tons of fun also, but there are way too many photos to post.  Maybe I will do a Christmas season post in January.  One exciting thing that happened on Monday is that I had a PET scan.  This is my first PET scan since June.  In June, is when I found out my cancer had spread to my bones, liver, lymph nodes all over my body and right chest pleural area.We've only been monitoring progress via the markers (CA 15-3 and CA 27-29), which are checked at my bloodwork appointments every two weeks.  My markers have gone down slightly, but my oncologist would say they indicate my cancer is fairly stable.  This is a good thing.  But, she says at any point, in her experience, cancer can spread rapidly, so we need a good way to monitor.  There is no way really of knowing whether the markers are indicating cancer shrinking, stability or spreading unless we line the up with something else---like PET scan results.  So, my oncologist (and of course I) were really looking forward to these PET scan results this week. Here is the impression from my June PET scan:

 

I am praising the Lord because the cancer is going away!! Check out my PET scan results from Monday.

Thanks to all the prayer warriors out there! To God be the Glory! On Monday, all day and during my PET scan I had absolutely no fear at all, and felt completely at peace.  I attribute that to the Holy Spirit and all the people who knew about my scan and were praying for me. 

How am I feeling though? I actually am feeling wonderful. The only complaints I have right now are lower lumbar pain and sacrum pain, which surprisingly has gotten worse.  I say surprisingly, because apparently that cancer is smaller than when I had a scan in June.  I pray that it will continue to shrink and go away completely!

I pray everyone has a wonderful Christmas season celebrating Jesus birth with their friends and family.

My Markers are Going Down!

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".

Happy Labor Day!

Labor day hike with friends

Zoology field trip

local beach time

Have a great week friends!

August update--back to original plan and learning new things about my cancer

Cancer update:

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.
  

 

A Trip To California for More Information

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.