I've grewn tiresome! (Yes, I know that isn't even a word but I'm tired of using the same words over and over so I'm making new ones!) I'm crying Uncle...raising the white flag...enough is enough.
No surgery date! UGH!
There comes a point when my patience begins to wear thin...we are at that point! Shelbie is definitely past that point!
She has been an absolute trooper for two months! Knowing that something dreadful is wrong yet doing everything in her power to continue on each day, cheerfully doing her best to work when she can and not complain about her pain or discomfort or the waiting, has been a remarkable feat!
It is bordering on human torture to be living with this kind of news for 6 solid weeks...you either have a massive case of cancer- (which she has 100% of the symptoms of cancer), or you have a rare, orphan disease called Autoimmune Lymphoproliferative Disorder that is destroying your organs and is going to lead to cancer! Either, Or...Both. Who knows? Not us!
Shelbie has been sleeping a lot this week. She is having more pain and discomfort and hardly eats much anymore. There is pressure under her lungs, which is where the spleen is pressing up against and pain in her back, I imagine because of the swelling along the renal artery and aorta. Evening is when her anxiety and impatience really ramps up. She has turned into a gamer the past two nights.
None of my kids are really into video games, they could take it or leave it. Shelbie passes the long nights away with Minecraft. She is quite proud of her houses she is building. She plays from about 11pm until 3am and then sleeps until the next evening unless she has a photo shoot, then she will do that but lately, she has been too sick to work this week. I lay in bed during the same period of time and watch the blue glow from the TV dance off the walls in the hall. We're a mess.
Today, I got to sit and listen to her make funeral plans. Awesome. That's exactly the kind of conversation I wanted to have on a Friday afternoon. Believe me, we don't do anything normal...we don't get answers to cancer in a normal way and I can promise you she isn't going to 'do' cancer the way everyone else 'does' cancer and if she dies, you will experience a funeral like you have never experienced before. Guaranteed.
First off...if cancer is the deal, she is planning an "Oh Crap! It's Cancer!" party. It is all planned! The food, the decorations, the games and even three service projects the guests will help complete. Shelbie has planned the whole event on her own.
Today, she has a good start on her funeral! Not kidding. She wants to have her funeral before she is placed on Hospice so she can be there! She asked me if that would be okay.
I told her 'YES! What a great idea!' That will actually save me a ton of money because I won't have to pay to transport her body from the funeral home, to a church, to the cemetery. We'll just go straight to the cemetery when she dies and have a prayer and a song and that's it! It's the funeral that actually freaks me out the most about death. The thought of standing there, spewing out comforting words, salty with grief, to a bunch of people you may or may not know, while you pretend you are stronger than you are, is less than appealing to me. Anyways, she wants to hear the music she has selected, listen to the speakers- which is going to be ME, I found out today, and then enjoy a family and friends dinner afterwards.
I don't actually know how I feel about her plan. I do know that if I have to engage in anymore conversations about death or dying I will end up in the loony bin. It's mentally exhausting! I will admit though, I am glad she is talking about this, processing it and I'm glad she feels safe letting her feelings out with me. I am. It's just such a sad topic to have with your child. We should be talking about dating, courtship, marriage, baby names, grand kids...a future; a fulfilling life in this world! We should be planning a summer vacation! What movie we are going to see next weekend! Not funerals and cancer parties!
It's sad and I've grewn tiresome of waiting.