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.

Post-July Life Updates

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.