HEALTH UPDATE: I’m so sore. My joint and muscle aches are bad. I’ll pull through! I’m still here! I was notified yesterday that I will not have a scan in a few weeks as previously reported. Now that I’ve been on the study for a while I will have a scan every 9 weeks instead of every six weeks. Okay by me! I guess. Actually, it’s always a mystery. Wondering what is going on inside of me. It’s haunting to know. It’s haunting not to know. I guess i will just need to keep my mind occupied on other things. Now that won’t be difficult!
Here we go….my mind is full and it’s going to burst. So much to say. Cancer related. Not cancer related….although cancer seems to have crept into not only my body but also into my thoughts and my soul. It has changed how I look at the world. This crazy world!
Life before covid was so different. I was just minding my own business. Working hard, trying to be the best wife and mom, getting diagnosed with terminal cancer. You know. Life. Willow came home from school with a few cold viruses in January and February. I was in the thick of it. Chemo. Tired. Sick, sick, sick. We could not handle colds on top of it. We always have kept her home from school with even the slightest fever. Nothing is more important than comforting a child when sick and also not spreading it to her friends and teachers! I caught her stuff and we made it through. She ended up sick for a few weeks. We were trying to decide what to do and bam! Covid 19. Schools were closed and Willow was never to return. We miss our friends from school dearly and sincerely. They will always be family to us.
Fast forward to current time. Kindergarten! Choices. Decisions. Big ones. I went into the process with an open mind. I wanted to hear what our school was going to do to protect my sweet girl. I should have known it would ultimately never ever be close to being enough. It is at no fault of the school. I am so very impressed with the steps and the thoughtful process they are enduring to do the best that they can for our children and teachers. It’s me, not them. I don’t take chances. I just don’t. It is the same with Willow’s food allergies. Why take a chance if there is a way we don’t have to? I should actually say, why not minimize the risk if we can? She’s staying home!
We have been working very hard (okay, Tom has been working harder) on creating a school space in our home. I’m really getting into it. We will be doing virtual school starting September 1st. We have Lisa and Walter next door ready to help us with a fun video recording of her first day. We will load her up in the car and drive her to school and everything. Like we’ve been doing since the beginning of covid, we will try and have the most fun as possible while staying at our home. We want her memories to be good! Can you imagine how she will look back on her childhood? She doesn’t complain often. She misses friends and sometimes gets bored but mostly we just have fun. She doesn’t let on that she knows how screwed up everything is. I often tell her that these are unusual times. She shrugs her shoulders and asks for another snack. I realize that she reacts the way Tom and I do. It’s important to act like an adult but we all break at times. I explain that to her. We are going through a lot but it doesn’t mean we can’t have some fun! Hence the water balloon fight at dinner time last night. Not an ideal time of the day but we make it happen for our sanity. That kid is a fighter. Her goal is to make us wet. No dry spots anywhere. Tom plays along and loves to take the brunt of the torture. Freezing cold, right from the hose water balloons. He loves it. I love him….and my girl.
What will life be like for her when she’s older? When I’m gone? It terrifies me. I hope I’m here for a long time. I just don’t know. She’s strong. I need to keep building this foundation for her. I’m writing her a book. I concluded in March when my situation was quite dire. It is hello. It is goodbye. It is a book of advice and what her life means to me. I have so much to tell her. A lifetime of things! Things that she isn’t ready for right now. It struck me a few months ago that this book is not yet complete. There is so much more to tell. Even in just the past several months! I want her to know what this time in our lives has meant. I don’t know if I trust the story to be told by other sources not within our circle. Who knows how they will decide to tell the story of our history in this time period? This is a nation divided! So I will continue to document our history in real time. I pray this book becomes an endless amount of pages. I also forgot to throw in some stuff about periods and boobs. You know, stuff like that. In case I’m not here. I’ve got your back, Tom!
I love Tom. He’s a really good guy. He takes care of me. He also drives me nuts, just like I drive him nuts. Not all days. Not most days. Once in a while, I guess. None of this has been easy for him but we somehow manage to get through it all. We’ve been connected at the hip since meeting almost 26 years ago. About 15, maybe 20 years ago we started to work together. I don’t know many couples that can do this or would want to do this. It’s pretty crazy. i can’t imagine it any other way. I wish I could make this cancer stuff easier for him. It seems like an eternity ago but after being diagnosed back in December I was crazed with the thought of him having to take care of Willow, work, grieve and plan a funeral on top of all of that! So guess what i did? ***Trigger alert*** Funeral planning, death discussion ahead….
I planned my own funeral. It gave me a sense of accomplishment. It’s weird but I enjoyed it a little. It wasn’t sad for me. I cried once when referring to Willow. Most of it was deep and satisfying. Did you know you can have a “green” burial? There is a place out near Mount Horeb. A different kind of cemetery. You can be buried without a casket. Without anything! Become one with the earth! That idea was really appealing to me! Whaaat? Yeah, I thought it sounded trendy and different. I liked the idea of a mummy like cloth covering my body. So yeah, I eventually changed my mind. LOL!
I found it hilariously ironic that all of my planning will likely be for nothing due to covid. Ha! Well hopefully I will be around long enough for my wishes to be fully carried out after covid is long gone. I planned a beautiful visitation and mass at my church. I have picked everything. Readings, music, flowers, casket and even bought a dress that doesn’t fit anymore! Gah! Hopefully I’ll slim down again because the dress is beautiful. My forever dress! Ha ha. By the way, how many people do you know with stage 3 pancreatic cancer that is on a diet? I am! A true testament of how well I’m doing. Tumor monster has apparently stopped eating my calories. I won’t lie. I don’t like that part of this but if it mean it’s dying than so be it! I’ll take the calories! Ok…so back to the funeral.
Hopefully everyone will be able to attend. I would like a lovely lunch with all the fixings. Ham sandwiches, baked beans and pickles. Traditional, right? I would prefer an upbeat situation. A celebration. Even the worst case scenario deserves celebration. I’m winning! I have already overcome so many obstacles! Cellllebrate good time, C’mon!!! I’m not sure why I get almost giddy when discussing my funeral. Anyways. i also have purchased a plot at a cemetery in Madison. I didn’t even tell Tom. I just did it. He knows now but it took me a while to tell him. It was a hot spot that someone had just returned to the the city cemetery. If there is one thing I know a lot about it is real estate. You gotta be quick and jump on the hot properties! I bought it quickly and made a dear friend in the process. It seems I ramble just about everywhere I go. Even at the cemetery. I met a wonderful lady that helped me with this purchase. She is so kind to me and she just sent both Willow and myself cards just last week! So thoughtful and loving. Thank you friend, you spoil us with your kindness!
I have a few loose ends to finish up but I’m almost free of my earthly obligations that I’ve often meant to complete should I have to leave. I’m going to keep writing that book to Willow. As long as I can. Forever would be nice. I want to be here for her milestones. I’m almost there for kindergarten. I should make it to that one, no problem. I was just able to share the loss of her first tooth! That was WAY more exciting than I ever thought it could be. She was so brave! Mom! My tooth! It fell out! Awww, baby!!!!! So proud of her. I have to keep this train going. I just have to. Life is so good. God is better. Thank you for this gift of life even through the worst time in our recent history. Thank you for teaching me what is important and giving me the gift of appreciation beyond words. I pray I can continue to come up with the words to teach my daughter about life and mankind about my life and how a death sentence can actually mean a better life! I’ve always been a quality, not quantity type of person. Who knows, maybe I’ll have both!
I love you all!