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| It happened! |
I always look forward to my support group that is every other Wednesday, this week was another great chat with my friends! I mentioned in our conversation how frustrated I was with my hair and that I wanted to just shave it off again. It seems it has stopped growing and is making me crazy! Dr. Buys piped in and said, "I could help you with that, Kim!" - meaning she could change my chemo to a drug that causes hair loss. Chemical induced hair loss is NOT what I had in mind! There is talk that we'll be able to go back to Huntsman for group. That will be awesome!
When I think about it, my hair not growing makes perfect sense. I have NO appetite, I usually just eat once a day because I don't feel hungry. I drink water constantly (it seems) but I can't seem to drink enough to keep myself hydrated. That's all thanks to almost 4 years of cancer treatments. I take supplements when I remember, but that can be sketchy too. My body needs nourishment it's not getting. I grew spinach this spring and have made a green smoothie or two.
People ask me all the time how I am. I wish I had a definitive answer for that! What you see on the facade is not what is going on inside me. I feel good about accomplishing one thing a day + dinner. If I can do that, it's a good day. Some days all I can do is flip through channels and nap. Sometimes people assume I must be in remission because I have hair. Remission doesn't exist for any stage 4 cancer patient. Even if things look good (aka "stable") at this moment, it won't last and we never know when it will change. When scans roll around every three months, there is a lot of internal worry and stress - "my quarterly panic attack". You never know when progression will happen. I worry a lot about my family, especially the littlest who has so much anxiety all the time worrying about losing me. I worry about Mat who seems to be thinking through what all of this will mean. I heard him say he'll retire from teaching at 30 years (2024? 2025?) and then take a year off before returning to teaching in another capacity. I mourn the things I will miss in my family's lives. Some days I feel melancholy and can't really put my finger on why.
I don't usually have much on my schedule and try to get out with friends when I can. Last week on Monday I went to dinner with my life long friend, Diana. We went to Olive Garden and then sat in my car and laughed about stuff for the next two hours. 😂 I had to retell the story about when I drove off with the gas pump at Costco, still running and attached to my car, how I saw the hose in my rear view mirror bounce back like a giant rubber band, and how I wondered what in the heck the guy in the car behind me was thinking! That was the week I was diagnosed stage 4. This week I had lunch with Sharla. We went to a new place she found in Syracuse that has South American food, pupusas specifically. So good! She's one of my gardening buddies, we love talking plants!
Mat's final concert was Wednesday night. It was SO GREAT! It was the first concert that felt "normal" after more than a year of crazy. He's done a great job adjusting his Choir program to conform to covid mandates and managed to hang onto and recruit students for the program. He's a dang rock star!
McKinley had a complete meltdown last night. She was upset about her braces, she was upset about her volleyball playing, she was upset about school. She is terrified about going to the dentist and orthodontist. She has an appointment at the Ortho tomorrow, that probably has a lot to do with her emotions this weekend. When she was little, I would have to sit her on my lap so the dentist could count her teeth. She would clamp her jaw shut and not let him in. After a couple years of that, she would sit in the chair by herself, but still wouldn't open her mouth much and pushes dental instruments out with her tongue. Imagine what it's like to take her for Ortho appointments!
Last night we went on a walk so she could calm down. We walked around the block and stopped to sit on our neighbors retaining wall in the shade. I've learned that I just need to ask a lot of questions and then listen. She's a very black and white thinker, everything is either perfect or a catastrophe. After a few minutes of talking things through, Kelly came around the corner - it's her wall! She could see that McK was struggling and came and gave her a long hug. She invited us to go sit on her patio and brought out Creamies and bundt cake for us. She seriously made my day. Kelly knows what's going on here, her family is very helpful and inclusive of our girls.
Life feels a little hard right now, please keep us in your prayers!
