Having 2 year old twin boys is so hard somedays. Life is nonstop. 

I wake up at 4:30. I workout, shower and get the twins up at 7. Chris makes everyone’s breakfast and the twins lunch and takes Jack to school. We get the little boys packed up, fed and off to school by 8:45. 

I hustle everyday. I try my best to plan fun things to look forward to. To take the kids to have fun experiences. I know at this age those experiences are for me and they are too young to remember. 

Yet sometimes the thoughts creep in. The sad thoughts that only someone with a terminal illness would think. Will life always be this hard, because I am going to die before it gets easier? Will I get to enjoy life not being as busy as it is today?

Will I get to watch them grow up? Will I live long enough for them to do things with me and have memories of me? 

These feelings usually start in the cycle with my scans. Because I stop trusting that my last scan will be the same as my next scan coming up. 

Jeannie’s dad died of a heart attack when she was 7. I see my grandma now, and she has lived a whole life without him. My grandpa (not Jeannie’s Dad) is wonderful. I hope if Chris remarries he has a wonderful wife too. Will I be missed even when he has lived more of his life without me than we lived together? 

Will my children remember me? Will they know how much I loved them and how much I wanted to be with them. 

Do I start writing my cards to them now? What if I live another 10 years. Do I rewrite them? I’m scared I’ll wait too long and when I reach the end I won’t have enough time or energy to write them all. 

With this illness, from what I’ve seen, treatment works until it doesn’t. The plus side is you live a really good life until the end but the end is >6 months and you don’t really know if it’s a setback or you’re dying. 

My birth father died at 49 of stomach cancer. His youngest was 2, and now she is 17. He has missed everything in all of his kids lives. His youngest doesn’t even have memories of him. Just stories. 

I see people, young people. Moms of young kids die from my exact disease all the time. Carly died almost 2 years ago, she left behind 2 boys and a husband. Her mom recently posted pictures of her boys and an update on them on the Facebook support group. Her husband is engaged to someone new. 

The ones left behind carry on. They live their lives. Just without us. It breaks my heart to think of what I will miss. 

I live in a dual world. Where I hope and pray that science keeps up. Could my cancer run the same medical trajectory as AIDS did? Where it isn’t a death sentence anymore and becomes a chronic illness or will I progress and have no more tools left in the tool belt. 

Who will sit shiva for me? Will the boys be old enough or even want to? Will my family say Kaddish on my yahrzeit? 

The medium survival in 2017 was 7 years. We don’t know what the current number is. There are no studies that show the overall survival or progression free survival on the medicines that are currently under development, such as the Nuvalent trail. But, what if I only live that long? That is less than 5 years from now. Who will help Chris? Who will love my boys as much as I do? 

My 40th birthday is this year. What if this is my last big decade birthday? 

I have for the most part adjusted to this way of living now. 

What should be my life expectancy of another 40 years is gone completely. But will I make it to 50? Will I get to see the little boys be bar mitzvahed? 

I wish I could control this. I wish I had 49 more years. I wish I could fantasize about my 90th birthday again and mine and Chris’s 50th wedding anniversary! 

Good health & getting old are such an unappreciated blessings by those fortunate enough to experience them.