It has been a while. This journey isn't like my other one, it is harder.
Tonight while tucking my 8 year old into bed he asked me " mom, what happens if you die in Mexico?" We are traveling to Mexico for a family vacation in February. It is supposed to be something to look forward to something to enjoy. And yet my 8 year old is wondering what happens if I die there. These are the things that we as a family deal with on a daily basis. So we talked about how he could bring me home and i hoped that he would. We talked a little about where he would like me to be so he could visit me after I am gone. He talked about how he wants me to be able to see him play football in this spring. Then we moved onto things like the Super Bowl, his favorite songs, and to practicing for the spelling bee. He is processing and that is good. I am able to have these conversations with him and not cry and to be truthful. I am sad that my child has to have these conversations, has to think about these things. I am happy, that he is comfortable talking with me about them and that he is resilient enough to go back to being a carefree 8 year old.
It hurts me tremendously that we have to have conversations like this. That my kids have to live the rest of their lives wondering when their mommy is going to die and what will it be like without me. It kills me to think about their future without me. That my time with them might be very limited and that I may not have the future with them that I always have seen. But I am beginning to be ok with that. I have begun to live my life differently, to think differently. I appreciate that I can snuggle with my son at night and have conversations with him about tough things. That we are close enough that he feels safe sharing his most intimate thoughts with me. He knows he is loved.
I know my family knows I love them. They know I will do anything within my power to stay with them. I hate that they won't know life without cancer as long as I am here. So I fight. I fight for more time with them and to create moments of life where cancer seems to be absent. I fight to live long enough that my youngest child will remember me not because of stories people tell her and photographs, but because she remembers me. Remembers who I am, what I bring into her life. I fight so that the people who are important to me know life with Liza. I fight because I am not done yet. I want to live. I want to survive. I fight so that the cancer doesn't win. I am not cancer. I am living with it.
So far the treatments are very tolerable. I can tell you that 11 days into my 14 day cycle of Xeloda, I am feeling it physically. I am starting to wear down. I am beginning my love hate relationship with food all over again. Friday will be a good day because it starts my week of, the week where I only have to take one chemotherapy drug. I seem to have developed a rash from the other chemo drug I am on. I hear that this means I have having a good response to it, so I will take it. The itching is enough to drive you mad and I am fighting taking any medicine to counter that. I am done adding more drugs to my system at the moment. So I am getting good at sitting on my hands and trying not to scratch. The good news is the nausea is gone. And since I am almost done with my second cycle of the Xeloda, I have a pretty good sense of how my body responds to the medication all all times of the day. So I am getting my new routines down. I have to get up a little earlier and have to stay up a little later but it is manageable. The side effects of the various meds are tolerable. I did have to change one of my heart medicines recently, as I had a reaction to it. My face blew up and I looked like i had a very bad botox session. I just had to laugh. I have been through so much lately that there was nothing else to do. I itch, have GI issues, have had to change my shampoo, and things taste funny. Not anything people would sign up for, but all are manageable.
I have about another 10 days before my schedule is filled with more doctors appointment and tests than I can keep track of. For now, I am enjoying the down time.
Life gets hard sometimes. But I have come to really appreciate all that I have. It is an understatement to say that I have a new understanding of what each person and each experience brings into my life. All of you out there who are reading this enrich my life in so many ways. You are thoughtful and generous and love me and my family no matter what. I can't thank you enough.
This is a very disjointed update. That seems to be how my brain works these days.
I am happy that I am now able to write some of my thoughts down. It is hard to acknowledge all that comes with a stage 4 cancer diagnosis. This is significant progress for me. I am beginning to reframe things and see things differently. I am beginning to be able to enjoy life again. I feel like I am beginning to live my life again. For a while, it had been taken from me. I am still struggling. But I am glad that I am beginning to take it back. I am glad that I can be happy again. Even if that means I can only live life in the moment. I will take that.
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