Did you know there’s not many books about metastatic breast cancer? I want to read every one I can find on Amazon and yet there’s only a handful. Maybe another reason I should write my own story. To help others in similar situations with questions about what really happens at this stage of the game.
Right now, I’m achy all over, especially my joints. I’m looking into CBD oil as an alternative medicine to taking narcotics for the pain. Tylenol and Motrin are my go to meds and I’ve noticed I can’t go a day without either of them. My bones just ache. I feel like I need my back cracked all the time too, especially my cervical spine (neck) where they keep telling me I have degenerative disc disease. Mark my words that something will come up there before my time is over. I say that because they said that’s what was on my T8 too and looky here! Bone mets! The doctors tell me there’s NED or no evidence of disease right now. At least until my next scan can rule it out again. Restaging every three months with MRI and Pet scan gets old. I get more and more irritated that I have to associate with cancer that frequently still. Going downtown means going to the big dogs...MD Anderson main campus. There’s people from all over the world that come to the hospital. How lucky am I? When we moved to Houston I always thought it would be awesome to work there but to have to be a patient is way different. As I walk the halls, I see sick people all around me. Old and young but mainly older than me. Some speak English and some don’t. Some have hair and some don’t. We all wear the same white medical id bracelet with our personalized medical record number on it which identifies us moreso than our legal name. #2203452 is my new cancer identity. I was gonna get it tattooed on my “bad” arm (left). But it looked like a prison number so I chickened out. I call my left arm my bad arm because that’s where they took the lymph nodes since the cancer started in the left breast in 2014. I can’t have blood pressures or lab draws or IV’s in that arm which stinks because that’s actually my best arm for veins. Anyways, I should consider myself lucky to have a team of very good doctors in a nationally known hospital right in my backyard so to say. It takes me maybe 35 minutes to get there from my house, maybe less. So there’s that.
Ok so I need to come up with a bucket list. 1. Get a tattoo. I have five. More if you count the dots I acquired from radiation simulation twice. Check that off the list. 2. Goto Disney World. Check! Did that 3 months before I got diagnosed the first time in 2014. Took my kids and celebrated Jaelyn’s 13th birthday there. Best trip ever! Those are just two out of a jar full of things I still want to do before I expire. Got to narrow it down and get serious though. Why? Because when I read stats about prognosis it says I have a 26% chance to live the next five years with stage four cancer. I was diagnosed with stage four July 2017. I’m 15 months almost in. I don’t have time to focus on dying because I need to focus on living in the moment. Loving life for what it is right here in front of me. Making special memories with those I love in the quiet times and boisterous ones.
I stared going to that support group. Talked about it last entry. And to hear how long people were given to live was scary but I need to know that for me. I think it will be hard to hear and I don’t even know if my doctor will tell me as I’m NED but I have to know what I’m facing. I do not want to be surprised. It comes down to that. I hate surprises. I really do. They make me anxious and I’m not good when Erik has something for me and makes me wait because he wants the anticipation to be that much greater. I can’t do it. Drives me insane! Do I love him for trying to surprise me? Of course I do but I am a control freak and I just simply can’t handle the knowing there’s something out there but not knowing when I will get it or when it will happen. Hence, I have to know a timeline. Even if the doctor is wrong in the end it will force me do some of the things I’ve been putting off. Avoiding is more like it. For instance my living will. Or my last will and testament. Isn’t that’s what it’s called? My advance directives. I want to be the boss of my own self until the end. I want to hear the music they will play at my funeral while I’m alive. I want to pick out my dress I will be laid to rest in. Ok, ok I’m jumping WAY ahead! Afterall, I’m NED right? And so I live my life like I don’t have MBC and I live in denial. That’s not healthy though either. I have to find the balance. My dad told me this week to “trust my instincts.” He knows I have mother’s intuition and even with this I know I will have it if I listen closely. If I open my heart and hear God’s whispers. I will know when it’s time to stop working or time to see someone I haven’t seen in a long time. I will know. Right? Just like someone told me when I wanted to know when enough kids was enough. “You will just know.”
So as for now, I’m blogging for peace of mind and to get my thoughts organized, trying to be intentional with others and situations, and trusting my instincts.
My fifth tattoo and it didn’t hardly hurt. Here’s what I posted on Facebook about the meaning: While an arrow can only shoot forward by being pulled back, so only by going through dark times (my health) can you push yourself to a better future. Also a bundle of arrows typically designates strength, as a single arrow can be easily broken, but a bundle of arrows is tougher to break, representing a strong bond between siblings. The bow represents me as the mother helping the “arrow” move forward to do great things in life.
Probably my favorite tattoo of all because of the in-depth meaning.