Harder Family

Harder Family

Tuesday, June 6, 2023

Update 6/6/23: Not Okay...

Psalm 34:17-18 "The righteous cry out, and the Lord hears them; He delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit." 

Why is the first question we ask someone, "How are you doing?" It is small talk and it is literally one of the first things we say in a conversation. I am the first one to admit that I ask this question all the time. I have kicked myself accidentally asking that question to someone going through a hard time. Of course they aren't doing okay and they sure aren't "fine". I now call "I'm fine" the Christian F word. Most of the time it is the response we just quickly give to that question "how are you doing?" Even if you aren't going through a serious trial, on a daily basis we face issues that would not qualify us as being "fine". 

I.am.not.okay! I was looking forward to sharing an update where I discussed what a blessing and answer to prayer yesterday was when I visited Tulip Tree Garden Farms. And yesterday was such an appointed time from God and exactly what I needed. The owner, Jesse, took time to sit down and explain the science and studies behind therapeutic CBD/CBG. I was excited to be able to buy product from someone so knowledgable and who controls the organic process from growth to production. What I appreciated about this encounter was that he not only discussed what they did at the farm, but he shared with me other places to get products that would be beneficial to Wayne and how to get them at more affordable prices. 

But the high from yesterday was deflated by today's visit to the doctor. We started the day by visiting Wayne's NP neuro-oncologist. She explained to us some of the tests and changes they want to make to Wayne's treatment to address some of his symptoms. Wayne is scheduled for a CT scan on Thursday morning following his radiation to see if it is swelling or tumor growth. They also increased his dexamethasone to see if that addresses the swelling. After that appointment, we headed to the basement to have Wayne's 10th radiation. Following his radiation, we met with the radiologist. He was concerned about Wayne's symptoms and said that the team is trying to work together to address them. He did say that he isn't 100% sure that what Wayne is experiencing is from radiation. He is concerned that there may be tumor growth going on that is causing these issues. 

I am concerned mainly for Wayne. He has been struggling not only with weakness and some other things, but now he is struggling to remember things he has heard, almost like short-term memory issues. I told the radiologist that the NP was doubling his dexamethasone and Wayne was confused. He didn't recall the conversation from 30 minutes before, which is not like him at all. I wrote off him not remembering conversation at night, because we can all be tired and not recall things. Wayne never struggled with this type of memory issues before, and it is scary.

Needless to say, I am broken after these appointments. It has been hard enough to see Wayne struggling with so many different symptoms. We are praying that it is just swelling and that the steroids will help address these issues. Unfortunately, we also know the reality of this beast and that is what is so terrifying and why I am not okay. I have been in my GBM support group for 8 years, so I know from others the progression that can occur, sometimes rather quickly. Again, we are just praying that this is just an effect of swelling and not progression.

But I think it is important to be real and raw. I cannot just sit back and pretend that I'm okay, because I'm not. The things we are facing and dealing with on a daily basis are hard and heavy, and I think it is okay and real to admit that I am struggling. I read this on Proverbs31.org today. "'When life mistreats me and I'm not okay, I need to be more accepting rather than rejecting of these raw places. Because when I try to move on too quickly, the breakdown almost always comes.' Hard times will happen. And we can get so wrapped up in trying to appear 'strong and put together,' that we cover up the pain and hurt we're experiencing...we can acknowledge those raw places as we take time to get ourselves back to a place of being okay." This is why I am so thankful for Celebrate Recovery. Although I attended to deal with issues and hurts from my past, it has given me tools to learn how to be real with others instead of trying to pretend to have it together when life is hard. I don't want to wear a mask and say I'm "fine". Instead, I want to say that I'm not okay, and yet in the mess and hard, I know that God is carrying me and sustaining me. But fear and sadness are my constant companions these days. I have to daily surrender it to God and trust Him, but they are there lurking.

Tonight, I am going to indulge in some ice cream and curl up and cry…because sometimes ice cream is the solution. For those of you who are into all this no-sugar, super healthy stuff, I don’t want to hear it. Don’t tell me how this will cause inflammation and isn’t good for me. Don’t tell me find another way to deal with all of this emotional baggage. Tonight I’m giving myself permission…

Prayer Requests: 

- Wayne: that the steroids work and help give him his strength back. That the CT scan on Thursday reveals swelling and not tumor progression.

- Safety for Naomi who is flying to Chicago this evening to be with us.

- That the new alternative treatments will help Wayne.

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