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.