Wednesday, May 11, 2011

3 am

It's 3am. My family is asleep. I'm not. I reached the end of the laundry, used all the energy in I had in cityville, and couldn't find anything else to do, well, not without waking the family. I haven't been sleeping well. Mother's day is hard, my shoulder hurts, I still have minor discomfort from surgery...I don't know...none of those things feel that big. I just can't sleep. I figure maybe I can 'talk' myself through it here. So, I have a CT scan on Tuesday morning. Some of my bloodwork came back abnormal. None of it was emergency abnormal, but the combination of the three tests that were, can indicate a recurrence, and even more worrisome, liver cancer. As poor as the prognosis is for small intestine cancer, liver cancer is much, much worse. Statistics show a less than 5% chance of 5 year survival. Most treatments are considered palliative, not curative. I know that I am not the only mom who's had health issues. I know a lit of mom's have died and left behind young children. I try not to wallow, but sometimes I just wonder when it's going to stop. When are the pain and worry going to end? What would it do to my husband and sons to lose Hadley and then me? Will my guys continue to beat odds and thrive? Will my boys stay healthy, or have they inherited my genetic mutation and be submitted to a lifetime of cancer risk and screening, at best? I think about that dreaded 5 year mark. The same one I dreaded for Hadley. I learned to both fear it and anticipate it. I figured if we could just make it to 5 year survival she could finally be a good statistic. She almost made I wonder if I will. July 2015. Keegan will be 13. Liam 11. Brandon will be 36 and will have almost exactly 4 years left in the Coast Guard. He'll likely be starting his 'twilight' tour. This is the time we've looked forward to...planned for...buying a home, putting down roots, living the dream, working 'regular' jobs. I'm sure the boys will be totally embarrassed of us and we'll ruin their lives on a daily, if not hourly, basis. If The Mister has his way they'll both be in love with football and eating us out of house and home. We'll all still be missing our girl, but hopefully she and the joy she brought to our lives will be closer to the surface than the pain by then. I wonder if Keegan will still love animals and dinosaurs. Will Liam still be as picky about his fashion statement as he is now? I hope I am there...I want it so badly. I don't want to leave them. I don't want them to ever, ever wonder if I'm proud, or forget my voice telling them I love them no matter what. I don't want my husband to struggle as a young's just too much. They've already survived too much. The boys haven't been tested for Turcot Syndrome yet. Insurance and all sorts of fun things have prevented us from doing that. We've decided we'll pay out of pocket for the testing if need be. Now, we just have to get scheduled to do it. Keegan was referred to a gastroenterologist at the children's hospital in the meantime. He's had some issues that, with our family history, warrant some attention by a specialist. A baseline MRI of the brain has also been recommended. I can't even put into words what this does to my heart and mind. How can I expect my poor nine year old to process it in a healthy manner? It's just so unfair. These boys of mine just haven't gotten a fair shake. It breaks my heart. I realize that this post is a huge downer. It happens. I have days that I'm reminded that I don't even own a cape. Today has been that day. I'm scared. I don't fear dying. I don't even fear the pain leading up to it. I fear the broken hearts of my guys. I think I stay awake at night so I can cry. I like to cry alone. I'm still not exactly sure why, but I do. Crying by myself in the middle of the day is just weird. Not that I haven't done it a million times, but if I have time during the day to stop and think and cry then something or someone is being neglected. ;) nights are quiet and dark. Nights have no expectations attached. So, I guess that's my safe time to cry, and stress, and just let whatever I'm feeling rise to the surface. Right now I think I'm feeling mostly afraid. The unknown is scary. I'll update when know more and am not so scared, hopefully not at 3am.


  1. Hang in there! I've been following your story for a LONG time. Hang in there. You've got awesome angels looking over you and your family!!

  2. All valid thoughts and emotions, and I'm glad you feel this is a safe place to share them. Sending much love and always, always praying for you.

  3. Still checking on your blog. Sending all of my prayers your way. I can't even imagine how scared and lonely you feel. Wish I had a magic wand to make it all go away. Your family has gone through so much.

  4. Oh... my heart hurts for you, my friend. Know that you are always on my heart and in my mind. I don't have any good words - just love and prayers for peace and strength - for you and your beautiful boys.

  5. No one knows what will happen tomorrow, so we embrace TODAY. You do that everyday. It's all you can do; it's all any of us can do.

    Keep on keepin' on. You are doing an outstanding job managing one of the most physically and emotionally demanding times in your life.

    I wish I could give you a real hug, uncork some wine and just laugh and cry with you.

  6. hi

    i followed hadleys blog and never really came over to this one, i was shocked by your cancer diagnoisis and then this entry, although i now see that your tests came up clear.

    i just want to say my partner was diagnoised with bowel cancer in 2004 and then in march 2006 with liver cancer. may 9th of this year was the 5 yr anniversary of his liver surgery. liver cancer does have low surival rates but people can survive it. if you would like to email me i would like to ask you a few questions if i may about hadleys disease if your up to it. i saw somewhere you suspected at one time she may have nf1, which my children have and my eldest also has stable non cancerous tumors (diff to hadleys i know) but i would still like to email with you if you feel up to it.

    i hope you continue to be cancer free and cant wait to see you post 5 yrs cancer fee.