Harder Family

Harder Family

Tuesday, October 3, 2023

Update 10/3/23: Sustain

Psalm 3:3-5 "But You, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord, and He answers me from His holy mountain. I lie down and sleep; I wake again, because the Lord sustains me."

Psalm 9:10 "And those who know Your name will put their trust in You, for You, O Lord, have not forsaken those who seek You."

Psalm 54:4 "Behold, God is my helper; the Lord is the sustainer of my soul."

Wayne and I realized that it had been a few days since we last updated the blog. Life has been a blur of days blending into one another since I am relegated to six weeks of resting. But through all of this, God has been sustaining us. 

The Hebrew word for sustainer in both of these Psalm passages is samak, which means to lean, lay, rest, or support. "The word sustain means to keep alive, but it's more than that; it's also giving physical and emotional support. It's sustaining something so it will not just live, it will thrive." (hebrewwordlessons.com) 

I thought this definition was beautiful. The more that we trust and rest in God through our trials, the more peace we experience. It explains what Wayne and I have been feeling through our suffering and trials. God is sustaining us in a way that feels like we are thriving. Only God could turn something bad into something good. You can see many examples of this in the Bible, such as Joseph being sold into slavery by his own brothers. He says in Genesis 50:20, "As for you, you meant evil against me, but God meant it for good in order to bring about this present result, to preserve many people alive." God can use anything in our lives for good!

Wayne Update: Wayne has been doing better the past few days. He seems to be getting stronger and feeling better. His PT has been going well and he has been taking short daily walks in the neighborhood. As hard as it is, Wayne has adjusted to his "new normal," which means accepting some of his limitations. We have a two Telehealth visits for Wayne this week. One is tomorrow morning with his oncologist to discuss his upcoming round of chemo that starts next Tuesday. They will review his bloodwork and make sure that everything looks good for his next round. Friday we will have a follow up with his neurosurgeon team about his last MRI.

Rebecca Update: I really love my oncologist at Baptist Health because she really seems to care about her patients. She called me on Friday to update me about my case. She told me that the tumor board met and discussed my case. They decided that I should do four rounds of chemo first, followed by radiation. Due to my two tumors that appeared around the same time, but apparently not metastasized, they have diagnosed me as oligometastatic. I'm not sure what that means, but we are going with it for now. We will discuss the plan in more detail at my appointment next Tuesday.

Yesterday, I met with a genetics counselor to discuss what they found genetics wise regarding my tumor. I feel like everyone has been subtly preparing me for some kind of genetic news since from the beginning, they all said I don't fit the profile of someone who comes in with this cancer. We have to wait for my blood tests to officially confirm the diagnosis, but it appears that I have PMS2 Lynch Syndrome. It is totally ironic that we feared that Wayne had Lynch Syndrome and had him genetically tested eight years ago. His results came back fine even though both sides of his family have a ton of cancer. On the other hand, both sides of my family don't have a history of a ton of cancer. The genetics counselor said that PMS2 would explain the rare display of cancer since it typically has higher rates of colon and endometrial cancer than the general population, but not has high of occurrence as other variants of Lynch, so it's possible that family may have had it, but it didn't result in cancer. 

I found all of this fascinating, as I did eight years when I helped map out Wayne's genetic family tree. Between Wayne's genetics and studying genetics for Shan Chen's unique gene mutation, I have a decent basic understanding of what she was explaining to me. Although I didn't want to receive the news that I did, I walked out of the meeting a little encouraged. As she said, if you are going to be dealt a genetic bad hand, at least it is the less aggressive one.

So where do we go from here? We wait for the blood work to come back to confirm the diagnosis. If it is PMS2 Lynch, then my sisters and parents will get tested to see if we need to notify anyone else of their potential risk for this gene mutation. As for our daughters, those that are over 18 can decide to be tested right away, or they could wait a few years since preventative observation starts later for PMS2 Lynch then other variations. Thankfully, they only have a 50% chance of getting it from me, so there is a chance they don't have it. The unfortunate side of it is that they have to look into big adult things like life insurance at a young age. Since this genetic mutation can exclude you from life insurance, they suggest getting a policy before being tested. 

On Friday, I have two CT scans scheduled (a chest and abdomen CT). We are praying that nothing else is seen during these scans. The medical field is filled with so many ridiculous rules. I asked my doctor why we wouldn't just do a pet scan and she said that insurance doesn't cover pet scans for this type of cancer (endometrial). We have to do a CT scan first and if anything is suspected, we do a pet scan. So, I'm praying no pet scan is needed.

Reading on the couch while Shan watches football is very entertaining. He is hilarious when he watches football and keeps me laughing at his intensity.

I tend to rotate myself from spot to spot during the day. I spend many hours on the deck enjoying the beautiful weather as we do school and I read. 

My tastebuds have adapted to my new way of eating. I hardly miss anything I used to eat before and I don't crave bad things. In fact, I had 1/2 of a caramel apple this weekend as a treat, and my stomach was upset afterwards. I feel so much better eating these healthier meals. 

I recently added juicing to my daily routine. Thank you to Courtney and Miriam for being my juice suppliers right now while I'm down. It's amazing how good you feel after drinking juiced vegetables. I got some great ideas out of my quick "read" through "Chris Beat Cancer". I am finding was to use an integrative approach to my health. I also have someone lined up to make me some great soups during chemo from my book "The Cancer Fighting Kitchen". 

Micaela was so exhausted from school, that she passed out next to Wayne. They had a nice afternoon nap.

While I'm laid up, I am working on a huge project. As many of you know, we attended an Inheritance of Hope retreat March 2022. We learned so many amazing things, including how to be more intentional in making family memories. We also learned about legacy and how to be intentional about certain things for when we pass. You don't have to have terminal cancer to do these things either. As hard as terminal cancer is, it is also a gift because you can plan and leave things for your children that you might not be able to do if you die instantly in for example a car accident or a stroke. 
So, this week, I had Naomi purchase these bins for each of the kids. I am filling the boxes with a variety of cards for them in the future (birthdays, wedding, baby showers, etc). I told them that my goal is to be here in person and hand them these cards, but if not, they will know that they were loved and thought of. The biggest part of the project is making them each a memory book from their birth until now. I am focusing on making them a book of pictures with me. I am so thankful for the times that Wayne insisted on taking a picture of me with the kids. I am usually the one behind the camera, but thanks to him, I have some great pictures as well. 

Joella's book is done! I'm now working on uploading pictures for Micaela's book.

Looking through 1000s of digital photos is exhausting, but it is also fun to walk down memory lane. I found a couple gems, including my friend Rachael, who is going through treatment for breast cancer, and a picture of me and my cousin Cori.

I found this gem of a picture. This is Sophia dressed in a pilot's outfit when we visited USS Midway. Maybe this started her passion for the military?

I am finding joy in the midst of all this downtime. Meeting with my friends in Asia has been easier with all this extra time. I cannot believe that my friend Wei Wei and I are almost through Acts! 

Joella is my little cuddling buddy on the couch. We have enjoyed many cheesy Hallmark movies when she finishes her schoolwork. We are doing out best to juggle everything without putting too much pressure on me or her. I know from experience that whatever gaps we may have from this years education, God helps fill in. Spending time loving on her is more important than a spelling test! 

My neighbor, Laura, came over today to play some games with me. I enjoyed learning how to play two new games. Micaela and Joella joined us in the Quaks of Quedlinburg game. They had played it before at Laura's house. 

Prayer Requests:

- Wayne: please pray that his two appointments go well and that his blood work looks good for moving forward with his next round of chemo. 

- Rebecca: please pray for my CT scans on Friday that everything comes back clear. Also for wisdom as we move forward with a treatment plan and that I continue to surrender all my fears to the Lord and trust Him through all of this.

- Kids: Please just continue to pray for them as they juggle two parents with cancer, school, work, volunteer work, and ministry.

Once again, thank you for continuing to pray along side us and support us. You do not know how much it means to us and how God uses them to sustain us through the hard days. 

No comments:

Post a Comment