Where has Summer Gone?

Does anyone else feel like this was the shortest summer ever? It seemed to fly by more quickly than any other. I don't know if this is just a part of getting older, or if it was due to being so busy. But, here we are. I thought it would be a great time to provide some updates here:

Travel: We were honored to be invited to the Leslie's Week retreat with other stage IV breast cancer survivors during the last week of July/first week of August. Our family enjoyed our time in the Smoky Mountains! I was thankful for my healthy body and its ability to hike so many miles with such big elevation gains with no problems at all. To be honest, the part of the retreat where we participated with other stage iv survivor families was tough. Several women seemed to be near the end of their journeys. I was hoping meeting with other survivors would be more hope-filled. But, in fact, it was the opposite for me. I was grateful to be able to escape to the mountains after the first day of the retreat to enjoy God's amazing artistry and creation. The air was fresh, the weather was wonderful, and moving my body felt so great!

Health: The day before our trip and boarding a plane I found out that the new drug my oncologist switched me to (Kisqali) had wiped out my immune system. I am only taking 200mg (normal dose is 600mg daily). So, they asked me to not resume until i got back into town and could get more bloodwork. When i returned, all my blood counts moved to the normal range, except my liver enzymes were highly elevated for the first time ever.  We decided to wait an additional week to let my body recover.  At last week's blood draw, my liver enzymes came down a little bit, but are still elevated. So, we are still keeping an eye on them.

An exciting thing is that I had my blood plasma level tested after my high dose vitamin C infusion last week. I love the clinic I use for these treatments, as they are so open and willing to work with me and my special requests. I had sent a study from the Riordan clinic to the doctor here. The Riordan clinuc is located in Kansas, and they are THE experts in high dose vitamin C in the US. At that clinic, they have discovered ultimate plasma levels for cancer patients to kill the tumors. I asked my local clinic if they had the ability to test my blood plasma level post-IV C. Can you believe they ordered a special testing kit from the Riordan clinic, drew my blood, and froze it and shipped it to the Riordan clinic overnight? Now I know that the level of vitamin C I am getting is the right amount--I don't need to increase the amount beyond the 50g I am getting. However, it would be ideal for me to try to get the infusions 2-3 times weekly. I am supplementing with high dose liposomal vitamin C on my off days from IV C to keep my plasma levels as high as possible. Anyway, I was so excited to get these results, as we were always guessing on what amount of IV C was the right amount for me. I tried to bump it up to 75g from 50g but my body just couldn't tolerate it. Now I know why. 

Some other great news is that my cancer markers are going down. At my previous testing in June, my markers were higher than they have ever been: both CA15-3 and CA 27-29 were in the 100s. At my last Draw of the markers on August 8, they had shot down to 65.5 and 82, respectively. So, all exciting news! I actually still feel great, still am juicing daily and getting in good workouts every morning and 2 mile walks in the evenings. In addition, I am taking a ton of supplements and naltrexone.

We thank everyone for your continued prayers and support through this journey. 

Summer Fun

I can't believe how quickly this summer has flown by. We are nearly into August, which means all of our regular activities will be starting back up soon.  Abbey attended a fun camp last week at a local church, which culminated in a musical, in which she was one of the many actors. She had a blast of course! 

She is at pre-teen camp this week through our church, and from the photos it looks like she is having an amazing time there as well.  She and a friend were so cute--they planned matching outfits and hairstyles for each day of camp.  

One of the sponsors at camp sent me this photo.

A couple of weeks ago Luke attended an architecture camp at the University of Texas and he really enjoyed it.

Health updates:

For the past month I have been on two new drugs and a lot of new supplements. The two drugs are through my oncologist.  She swapped out Verzenio for Kisqali (ribociclib) and exemestane (aromatase inhibitor) for fulvestrant. The fulvestrant is just annoying. I have been going in every two weeks for injections in my buttocks for the fulvestrant. It is EXTREMELY painful and it takes two nurses. The needles are so long and thick and the liquid is also very thick. One nurse gets on each buttock and injects the medication slowly over about a minute. When they finish, my legs don't want to walk and my butt hurts and has knots on it for about a week.  But, I guess the bright side is that I don't have to take another pill every day. I am tolerating the Kisqali pretty well, although I am only taking one out of the three pills per day. Even at that amount though, my white blood count and neutrophil count is just tanked. So, I have to be careful and not be around anyone who is ill.

In addition to the allopathic medicine, I am taking a number of supplements. I had an amazing visit with the functional medicine doctor at the clinic that I go to to get my weekly high dose vitamin C infusions. We reviewed the results of some testing that I did through the clinic. The test is called Nutreval through Genova. I discovered so many deficiencies in my body. I'm guessing the cancer in body has required it to need additional nutrients. My detoxification pathways are not working well, and it was cool to see how certain missing nutrients/minerals could break down the entire cycle. The crazy thing is one of the things I was low in was vitamin A--and that is probably the nutrient I intake most out of all of them, with my daily juicing of carrots and eating so many sweet potatoes, etc. But, my body wasn't able to use those nutrients with the deficiencies in other areas. So, we have added a few supplements and taken some away and hopefully this will correct the issues. I am also slowly trying to increase my weekly high dose vitamin C dosage. The clinic ordered a test for me that I will hopefully be able to take at my next appointment--this test will assess whether the dose of vitamin C I am getting at the clinic is raising my plasma vitamin C enough to be effective at killing the cancer. Maybe in my next post, I will share my supplement regimen...it is a lot!

We are excited we were selected to be one of 28 families out of 300-350 nominees to attend the Leslie's Week retreat at the Dollywood DreamMore Resort in Pigeon Forge, TN. It is a special retreat for Stage IV metastatic breast cancer survivors and their family. Our hotel at the resort is completely paid for and they are even gifting us tickets to Dollywood. We are so excited, as we have wanted to bring our family to the smokey mountains for vacation for a while now. We are excited to explore! I will try to post some photos when we get back home.

Thanks everyone for your continued prayers! I am praying that God uses all these treatment modalities to completely heal my body....not just of the cancer, but healing my immune system so that it works well from now on!

June Updates

 I can't believe we are already in the month of June, and already one year into my stage IV cancer diagnosis. It's been a very busy time for us lately. We've wrapped up school-year activities (including an overnight stay at Moody Gardens Aquarium for Science and an overnight stay in San Antonio to see the Alamo and other fun sites for our history co-op), the kids had their spring piano recitals, Abbey had a surgery to remove two rods from her right arm, Abbey was "Dorothy" in the play "Dorothy in Wonderland" and performed in a musical at church, Luke finished up a spring basketball season, we celebrated my Mother-In-Law's birthday in the Houston area, we all finished up VBS at church, Luke went to CG Victory camp and then off to Church youth camp for a week, while Abbey attended a day camp here locally and Drew went to California. Last year at this time, it was during VBS at church, our wedding anniversary and CG Victory that I was going through testing and found out my cancer was Stage IV. So, going through these activities again this year definitely stirred up some painful memories. But, I am also celebrating a year of good health. I know that sounds strange considering my diagnosis, but I really do feel very well. And, I know back when I was first diagnosed with stage 3c breast cancer in 2012, many of my friends who had similar diagnoses as me moved to stage IV and then their health declined very quickly (several of them passing just after a year or so). My heart was broken for these young women and their young families, and I definitely do not take for granted my health for these past 11 years!! Before I jump into my PET scan results, here are just a few snapshots of the past month or so...

Abbey starred as "Dorothy" in "Dorothy in Wonderland"

Piano recital

Abbey helped lead worship at VBS

Luke and his buddies that helped with recreation for kids at VBS

Luke demonstrating the obstacle course for the kids at VBS

Abbey participating at VBS with her group

more VBS

Drew, taking a picture of me, taking pictures at VBS. We were part of the media team.

Luke at CG Victory

Celebrating Mimi's birthday--sock hop style

searching for crabs at our overnight in Galveston for science group

Abbey and I played at the museum of Illusions one night while Drew and Luke were gone last week.

I spent our 15th wedding anniversary getting a PET scan, while Drew was in California. Not the best way to spend the day, but honestly, we aren't big on celebrating specific dates. Any day we get to spend together is a great day and I am so thankful to be married to my best friend. I am praying for many, many years to come!!

This morning, I had a follow up with my oncologist, who revealed the results of my PET scan to Drew and me. My PET scan showed increased uptake in my bones (Left L2 vertebra, left L4 (this one showed an increase in SUV max from 2.7 previously to 9.1 now,) superior left acetabulum (hip) and mid sacrum.) I didn't see any mention of ribs, which WERE mentioned a year ago, so that's good. 

I also had an increase in uptake in my lymph nodes (4 of them showed uptake, whereas I believe there were more in my PET scan a year ago) and my liver showed two areas increase slightly in uptake and one decrease. 

The oncologist's opinion was considering it has been a year, it is fairly stable (aside from my l4 vertebrae) but heading in the wrong direction. So, she wants to switch some things up and I will research those things over the next couple of weeks while we are awaiting insurance approval. (She wants to switch from the aromatase inhibitor I have been on to a different estrogen receptor antagonist, Fulvestrant, and a different targeted therapy, the CDK4/6 inhibitor Kisqali.) In the meantime, I have been doing testing with a functional medicine doctor and I am hoping to find those results out within a couple of weeks. I am trying to figure out what is going on with my immune system. 

What is crazy is I feel great! I would never know I had cancer had I not gotten these PET scans. I know probably diet and exercise help me feel so well and have so much energy to Go, Go, Go! The only thing I have noticed is a little more back pain (I always have back pain, it's just gotten a little worse. But, I think I am fairly immune to the back pain since I have had it for so many years due to my scoliosis.)

Anyway, we would love your continued prayers! I know with stage IV cancer, things can change for the worst in an instant. But, I keep telling myself, "I am healthy, I am healing, I am well!!" Thank you Jesus! This is how, specifically, we would love prayers.

• That we can figure out how to get my body in tip-top shape so it can fight the cancer itself (with specific natural healing modalities, supplements, foods, etc. This is why I am getting testing with a functional medicine doctor.)
• That we can make the right decision in whether to increase high dose Vitamin C infusions, keep it the same or drop it. It is so hard to know if they are helping. If I stop them, and see an increase in my cancer, perhaps they work? But, that is risky. Perhaps they are keeping me somewhat stable? I need wisdom here, because they are EXPENSIVE!
• That my cancer just goes away! I do believe in miraculous healing. 

Thank you for reading!

March 2023 Life and Cancer Updates

Life in 2023 has been a bit hectic thus far, but it is all looking up from here!   We've had lots of basketball tournaments (a few out of town). At the end of January, my cancer markers were looking great and my circulating tumor DNA number (Signatera test) had dropped significantly (at the end of October it was 1.59, and at the end of January, it was .69). Then, many stressful events occurred. At our district basketball tournament in Mansfield, TX at the end of January, Abbey was swung to the floor at a basketball game by an opposing team player and rushed to the hospital with a compound fracture. Both her radius and ulna were broken in her right arm and one of the bones came right through her skin. It was rough and she underwent surgery where two rods were placed in those bones to hold them together. I felt so badly for my sweet girl. I hadn't gotten any sleep in the hotel the previous night, and now, I lost another night of sleep caring for our sweet girl on (making sure she didn't roll onto her right arm while sleeping).

We got back early on Sunday morning, and I managed to get a little sleep Sunday night and Monday night. Then, my dad came to visit on Tuesday. We had been looking forward to his visit, but only got a little time of fun with him until Tuesday night, when a terrible ice storm came to our town and we lost power (cue more nights of no sleep).  We lost power for days and had a lot of destruction at our home. We lost trees, massive tree limbs on our gorgeous live oak trees and several massive limbs even fell on our home in five places, damaging the roof and gutters. We also had limbs fall on other things all around our house, causing a lot of destruction. Our friends and neighbors were so kind to offer us a place to stay with them since they had warmth and power (this was especially important since my dad was there visiting). I say all of this only to explain the battle I have had with the lack of sleep and stress lately. With all that, some of my healing modalities couldn't happen. So, needless to say, I was not surprised at my next blood draw to see how my tumor markers came flying back up (not good). You may recall that in December, my PET scan showed remarkable improvement. In fact, many of the cancer tumors were completely gone and the ones that remained were greatly reduced. Things were headed in the right direction. Since things were improving, I decided to test some changes I had made previously to see if they were necessary. With Christmas, I added occasional sweet treats. In addition, I added more occasional meat to my diet. Honestly, every time I did though, I regretted it, as I didn't feel well after. I have learned that meat doesn't make me feel well. Everyone is different, but it is better for me to have very high quality fish or chicken occasionally only. Red meat in general is no good for me. The other problem with meat, is that when I do, I eat less vegetables (nutrient dense foods that my body craves). I also had higher glycemic index foods on occasion. 

 

We tried to take care of the massive amounts limbs that fell around our house and property ourselves, but they were just too numerous. We finally caved and, after getting the most reasonable quote we had seen, paid a company to help us clear all the limbs. Although our front yard looks so much different (not in a good way, due to losing a huge canopy of live oaks that we previously had), having all the branches cleared to where we could actually see our home lifted a very heavy burden. 

Anyway, fast forward to Monday, March 13, where I had my 3 month follow up PET scan. I was at peace during the scan due to all the prayers going up on my behalf. I received the results on Thursday by phone, along with the request that my oncologist wanted to meet with me the following day. Anytime your oncologist wants to meet with you as soon as they receive your scan results, it is not because they are good results. My results showed progression of the cancer in my bones and lymph nodes (from the previous scan), but my liver tumors are stable. It definitely wasn't the response I was hoping for, but with the stress and lack of sleep I had over the past couple of months, I definitely wasn't surprised. I experienced changes in eating, my healing modalities and exercise, sleep and stress and I am hoping that by going back to the strict lifestyle I had during the first 6 months of treatment, and with prayers, my cancer will go away. I am also working hard on making sure I deal with stress the right way. Stress kills, y'all. I think my labwork clearly shows how important sleep and stress reduction is.

After speaking to my doctor about other treatment options she was considering, we agreed to stick to the current course for another month and see what happens to my circulating tumor DNA. At my last ctDNA test at the end of February, we noticed it was back up to 1.47, from .69 (it was 1.59 at the end of October). 

 

 

Typically, you will see changes in that prior to seeing changes in diagnostic testing. Considering the PET scan seemed to line up with this increase in ctDNA (my Signatera test results), it seems like a pretty good indicator to my treatment response. A blood draw is much easier than a PET scan. So, I will get weekly blood draws (my ctDNA every two weeks) and in a month, I will meet with my oncologist to see if things are working and what our continued plan is. I will schedule another PET scan in 3 months, in June (which will be one year from my initial scan.)

 

So my plan is to go hard core on all my healing modalities, diet, exercise, stress reduction, prayer and meditation, deep breathing and more! I would love your prayers---prayers that God leads me to what I can physically do to help heal this cancer and bring my body to a low inflammation and healing state permanently.  I want this cancer gone--and gone for good! I would love for your prayers of complete healing of my body so that I may enjoy many, many years with my family.  Thanks for your continued prayers!