Debbie Downer

I’m having a terrible time being upbeat and positive this week. Maybe because I’m thinking a lot about death and dying. Not just for the people I met at support group but for myself. I know it scares my husband and I most certainly can’t talk to anyone else about it. I’m feeling alone and depressed. I don’t want to scare Erik. I don’t mean to make it seem like I’m giving up just because I don’t like having scans anymore because of the anxiety it brings. I don’t like imagining my kids grieving for me when I pass. I certainly don’t want to put them through the pain of losing me. But seeing that someone in my situation has three years to live on average is a slap in the face. I am already 15 months into those odds. If I’m truly only given 21 more months to live how will I chose to spend my last days? Working? Not if I knew for sure I wouldn’t be hurting my family by taking time off and/or permanently quitting. I guess I have to change my perspective and start living for today and doing what I want to do today instead of waiting. I can still work and still be working towards preparing my family for life without me. How does one do that? I have no idea. But I can eliminate some of the hard decisions that go with things like funeral planning and stuff like that. But am I strong enough or have I come to terms with doing things like that? No probably not yet. Because I’m not ready to die yet. I want more than 3 years. I want to beat the odds. I don’t want to be a statistic or one of the 113 women that die each day of MBC. Hell, I don’t even want to be one of the 155,000 that even has the damn disease. I’m so depressed and angry! I need answers and need someone to tell me it’s gonna be ok or not and what the plan is for me. 

NED

What does NED mean? I was told this by my doctor after the last scan and so I guess it means I’m in remission?? Can stage four patients be in remission? That sounds very funny to me. Here’s the definition google has out there in the intranet...

“When breast cancer advances to stage 4, the five-year survival rate is about 26 percent. There is currently no cure for stage 4 cancer. But for some, it can be treated and managed. ... For many women who believe their breast cancer is in remission, the reality is that recurrence of the disease is likely.”

So I guess NED is a good trying but I shouldn’t get hung up on it because it won’t last forever. 

Young Survivors Coalition Summit 2019

I was searching the internet like I do most days now for info on MBC groups and came across this group for young people diagnosed with breast cancer like myself. I started to look and they have a seminar or a summit in Austin, TX in March 2019. Well, guess who is going? That’s right! I’m making it a couples retreat weekend and making my co-survivor go with me. I’m attending the parts of the seminar that y’all about Living a Legacy and writing a memoir, along with taking care of your body as a patient with mets and lastly a section dealing with what’s new with MBC. Erik will attend sessions for caregivers which I highly recommend for him. If nothing else he can help other young husbands deal with this new role they didn’t sign up for. So that’s March 7-10 and I am very excited to go! 

I have also come across a blog post of a lady who talks about being sick but not looking the part and that’s what so hard on friends and family to understand. When you have hair and don’t appear sick they say things like “you will beat this!” When in reality this is terminal and we will fight our whole lives to live what life we have to the best of our ability. That does upset me a lot I’ve noticed. People who just think you’ll get better like you have the flu or a cold. Not quite how it works with MBC. I mean my body is eventually going to wear down little by little. What I used to do with ease may start making me super tired afterwards. Simple things too like cleaning house or going to lunch. I am so not there yet but I do get tired and I do sleep a lot when I can to make up for lost energy. I protect my sleep since I work night shift and my circadian rhythm is off. I do it moreso now that the cancer is hiding in my body. Traveling thru my lymph nodes at a snails pace just waiting to rear it’s ugly head somewhere new.  

Anyways, I tend to get off topic so I want to just say how fortunate I am to live close to big cities like Houston and Austin where I can attend these conferences and learn more about my condition and ways to make life liveable. And glad my husband gets to be a part of this journey with me. For better or worse, sickness and in health. He signed up for this he says and he will accompany me along the way no matter how long or short that may be. God love that man! 

To write or not to write??

I’ve been told I should write a book. Afterall, isn’t that what I’m doing here in this blog? A place I can jot down my thoughts, my results, my crazy... and someday when I’m gone, my husband can print this out and give a copy to my kids so they remember me and all I went through with this horrible disease. Not that they’d want to remember the stress of it all and what it did to my body. But maybe hearing my words will give them comfort and maybe having record of my journey will give them hope. So I guess instead of only writing when I have a scan and how that pans out, I need to start getting real and writing about my feelings as I face the last leg of this race. Now, it may take me 20 years to finish and I’m ok with that but all stars point to a more grim outcome so I need to start living everyday to the fullest. I need not waste time doing things that don’t bring me joy. I need to make my final bucket list and “say what I need to say” before it’s too late. I did start yesterday as I got my fifth tattoo in honor of my kids and their struggle with my illness and my hope that they can all go ahead and conquer the world with no fears because they saw my strength on this journey. It is four arrows representing each of them and the bow which represents me as their mom who is helping them move forward with their lives and not get trapped in the bad stuff like cancer. 

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. 

Frustration and Random Thoughts

Lots of scans have been done since my last post. I've had the colonoscopy which didn't really amount to much. They took a polyp and it was fine. The prep for that sucks by the way. Don't want to do that again for a while. I've had MRI's, ultrasounds, mammograms, and Pet scans. I've had severe scanxiety  each and every time I have to wait for results. Also thinking the worst. I've started going to a support group for metastatic cancer, the 3rd Wednesday of each month, thru MD Anderson in The Woodland's. I've met people worse off than me whose hope has been stripped from them. I've met people who have a deadline...DEAD line. I've met people that have outlived their doctors prognosis. I still have hope. I am however curious as to how much time my doctor thinks I have. Because in all honesty, I don't want to waste my time working and being away from my family if I only have a few more years left with them. I know work though makes me have a purpose and it's a safe place, where I don't have cancer when I'm there. I just have so many questions that I want honest answers to and yet I'm afraid of who I can share the information with because I'm protecting those I love. I've talked to a therapist but it really didn't help. She didn't tell me anything I didn't know already. And I felt stupid. I think I need a therapist with MD Anderson. Someone who knows what cancer patients go through. I'm all over the place in my thoughts.