Yesterday was a whirlwind of information, including discussions of the future. I absolutely attack those conversations matter-of-factly and want to know the ins and outs of every detail. I speak strongly because I am passionate about my future and my prognosis.
One thing that I have learned throughout my travels, is that doctors often don’t want to share more than what you want to know. I completely understand and respect that. And I imagine that there are many patients out there who don’t want to know the details…they simply want treatment, progress and to move on with their life. I don’t fault them for that!
I have learned through trial & error that I need to tell the doctors that I am fully aware of my prognosis and that this disease is, in fact, terminal. I also want to know what the doctors are going to do for me. Not just throwing medicine or research at this cancer but real world living. What does future treatment look like? What are the odds? What about diet and exercise? I have not been disappointed by a visit yet but I think it helps for them to understand that I do actually try 😉 to understand.
But it’s moments like this…where I am up at 3am just because. The world is dark and my boys are breathing heavy with sleep. The reality of my diagnosis sets in and frankly, I am scared. I am scared of my numbered days. I am afraid of my boys waking up without me there. I am afraid of Jacob asking for mommy and there being no answer. Frankly, I am terrified. Every decision that I make, I have to ask myself if I will be here to see it. Yes, all of our days are limited and that is not lost on me. But the reality is that we know my days are limited…and that we have to make the most of each and every one.
Traveling constantly and asking questions everywhere helped tremendously because it allowed us the opportunity to understand what is next and what comes after that. Being home and settled into our “old” routine forces my mind to relax and truly understand everything…everything. There are impossible decisions to make in the future, many tests still outstanding and lots of appointments still to come. And yet, this is our new reality. This is our new world. The ins and outs of our day, consumed by metastatic breast cancer…whether we actively think of it or not, it’s there.
Every ache, pain, dizzy spell, stomach growl, or skin bump, I ask myself if the cancer is progressing. Has Xeloda stopped already?! I haven’t even started Xgeva (more to come on that). My travels aren’t over, my tests aren’t back – what’s actually next?! And yet…I have a life to live…literally.
I have a husband that I love more than anything and who is so amazingly wonderful to me. I have a little man that I am so ridiculously blessed to have in my life. He has been so incredibly amazing and I don’t know what I’d do without his joy and light in my life. I have a career and a home and more blessings than I could ever dream of…and yet, I am scared of what’s to come.
I once said to a friend that going from Stage 3 to Stage 4 is *almost*….easier somehow. I don’t sit up at night wondering about the future or when the cancer will return. I know my prognosis and that I will fight will all that I have and yet somehow the mind rests a little easier at knowing versus not. I wouldn’t change that answer. I’m glad that I know what I know, though I would never wish it on anyone.
This is metastatic breast cancer. This is the terminal disease that my family and I live with each and every single day. I was asked this weekend if I felt like I was dieing. No, I don’t. I feel like I am living more now than I ever did before. I don’t feel like my life will end anytime soon. And yet, there will come a point where treatment will stop workong, side effects will become worse and my body will give in.
And that is what I fear. I fear that my hand grasping Joe’s to stand will turn into me not being able to lift my precious son. I fear that my sore feet will turn into my inability to walk at the park. I am scared that my crazy food diet will turn into only what my stomach will handle. I am so afraid and yet…I can’t be.
I won’t be.
So I pick myself up.
I allow myself these dark hours of the morning, where the crickets churping outside remind me of my childhood in New York. I give myself these moments of tears, anger and frustration so that when my little man wakes up, he doesn’t see any of it. I remain strong. For him, for Joe, for my family, for my friends…for me. Because I have to.