reflections

All I want for Christmas is to have a clear scan this coming January and to spend many years with my son. The biggest Christmas wish I have is a cure for cancer but that dream seems too big, doesn't it? I don't think we're even close to a cure but we can still hope. Hopefully by the time my grandchildren are grown there will be a cure. For now all I can hope for is that more medications are discovered so that I could live like this and manage this cancer like a chronic disease. That's what the doctors tell me, but cancer seems like a pretty f***ed up disease to live with. Even with all the medications available most people with Stage IV cancer don't make it past 5 years and that's not acceptable to me. Scientists have made a lot of progress with medications for HIV and you see many people affected by it live for many years. There are people with Stage IV cancer that live 20+ years but that is very rare. I hope that I am one of those people because there are many...

So, I had labs taken the last time I had my infusion and I had my first big panic attack in a long time. It all started because my nurse couldn't get good blood return from my port so she started to vigorously flush my port with saline syringes. I'm not sure how many flushes she did but it felt like 100. With each flush all I kept thinking was that my port was clogged and that one of the flushes was going to dislodge a clot and cause me to have a stroke, pulmonary embolism or brain aneurysm. I know, my mind goes on overdrive and starts thinking irrational medical thoughts which cause me to have a panic attack. My nurse had me change positions several times and I could feel the flushes in my neck which is a very odd feeling. If you don't know, part of my port goes up into my neck and the other end goes just above the right atrium of my heart. My port is used to give me IV medications and for blood draws so that they don't have to use the veins in my arms. Chemo medicines...

I had a good weekend with my family. We celebrated my niece's birthday by having a family barbecue and watching movies. I love them all so much which made me start to think about how much they really understand about my diagnosis. One of my brother's mentioned that one of his co-workers had a brother with terminal cancer and somehow we talked about my own diagnosis and how I have incurable cancer. My brother didn't realize that my cancer is incurable. He believed that I was cured and I wish with all my heart that I could be cured but I can't. The best to hope for is to have a long periods of no evidence of disease with each treatment in order to prolong my life. If I'm cured, it would be a miracle that I would embrace.  I usually don't like talking about my diagnosis with my family. In a way, I like to pretend that everything's normal when I'm around them. I only let a few family members see me bald when I was going through chemo. I guess in a way I wa...

"Just smile and nod." That's my new motto made up by a college friend. I'm just so tired physically and emotionally. I feel like I often put on a happy face for others just because nobody truly wants to hear how you're really doing. Sometimes it's good just to let it all out. I really don't think it's good to hold back your feelings. I actually cried myself to sleep last night due to a combination of exhaustion and sadness. I just really want to be able to sleep through a whole night without waking up. It's kind of funny because at work my patients always comment about how much I smile and the smiles are real. It's just that I don't want to have to smile all the time to make other people feel better around me. Does that make sense?  There's just too many changes. My son and I need some consistency for awhile. I can't imagine how he's feeling after everything that has happened in the past year and a half. He's a strong kid ...

I'm having a down day. It started off good. I got a Daisy Award at work which is a form of appreciation for a job well done. I was nominated by a patient which is so sweet. But all of a sudden I was overcome with sadness after I got home from work. The holidays are fun but at the same time it can bring back sad memories as well as make me think too much about the future. All of these thoughts can be overwhelming. It's just not fair. If this only happens to strong people then I don't want to be strong anymore. I just want to be "normal". Maybe this is all just a test. Who knows but I'm tired of being tested over and over again. This is the evil work of cancer. It really messes with your head. It's just too many changes  recently and I feel like nobody truly understands. I really have to get away somewhere. I keep having nightmares and I really want to forget them. I'm just tired but definitely not ready to give up. Gonna keep fighting and moving forward...

Recently I have been having really bad muscle cramps in my back. It started out in my calves, then my toes and now my back. It really worries me. I'm not sure if it's just long term side effects from my medication. I have been getting Herceptin for a year and a half now and Perjeta for a year. Not only am I worried about my heart giving out on me but all these muscle cramps have me worried that the cancer is coming back. Sometimes I'm not sure if it's my muscles in my back or my bones. I'm pretty sure it's my muscles though. In a way it's like my mind won't let me move on from cancer, it's always going to be there. Those thoughts won't ever truly go away but maybe it's because I know I'm at Stage IV already so I'll never truly be in the safe zone. I don't think about it all the time though but there are days when it's all I think about especially when I have these pains. For the most part I am happy and enjoying my life as m...

The Thanksgiving holiday is over and I have to say that I enjoyed every minute of it. My niece came to stay with me to help out since my son was off of school for a whole week, so on Thanksgiving Day we spent it together eating good food and watching movies. This evening we wrapped a few presents and later this week I will get a package delivered which I can’t wait to wrap because it’s my son’s Christmas present. I think he’s gonna love it. I am thankful that I get to spend another year of holidays with my family. Both my niece and my nephew helped me out a lot during my chemotherapy last summer and I am grateful every day for them. Support from your loved ones is the best feeling and since I didn’t get that from my significant other at the time it was nice to have people around me that did love and support me. Especially since I was still working and I felt like I didn’t have time to relax and reflect on everything that was going on. People still ask me how I could still work whi...