Wednesday, September 4, 2013

Five Guys

I walk slowly, my infusion bag hanging over my belly and chest. Every few seconds the pump audibly activates, slowly pushing highlighter yellow fluid through a port (also visible,) in my chest. I can feel their eyes on me and its strange, because people don't usually stare. I just wanted to get a cheeseburger in peace. I don't think it's fair to make my husband buy me a burger, and hide in the car, or find a way to hide my pump, so I don't make others uncomfortable. I'm uncomfortable, ok? It's bad enough feeling it. When people stare like that, I wish I had business cards. I would tell them about my blog, explain a bit of the story. I would say, it's ok to be curious, but please, stop staring at me. And if I catch you, smile. Please smile at me, because I could use the love. I'm not a monster, I'm a human being just like you. And I really, really like cheeseburgers and Mr. Pibb, which I can get in obscene amounts thanks to Five Guys Coke freestyle machine. Obscene, I tell ya.....

So I self consciously slide the bag to the side, trying to pull the line so no one else notices, and slip it under my purse before I order. Even though its hot, I pull my sweatshirt over the tagaderm covering the needle in my chest. I find myself doing that a lot. Feeling hot or uncomfortable so people don't see the new me. The bald, fat, scary looking cancer patient. But what I can't stand the most is the pity. Trust me, I have plenty of self pity. Enough for the whole world. So you, dear strangers, can save it and send me your love instead. Mmmmmkay?

Yesterday, I had my first of the rounds I never thought would happen. Technically, treatment plan wise, its my 2nd (of 4,) consolidation round. But it feels like the first since last week was, for so long, what we were told was the finish line. Now, its six weeks from yesterday. Plus back to work full time, possibly the entire six weeks. So yes, a bit challenging. I've been feeling, physically, a lot of the effects of the chemo a little more strongly. They include mild neuropathy- numbness and tingling in my fingers, increased fatigue, general weakness, sore all over. The steroids have given me my least favorite side effects actually: thinning of the skin (really attractive,) to the point where you can see my veins and actually the grey of my port. It's disgusting furreal. I also have what's called a "buffalo hump," a redistribution of fat on the back of my neck which I try not to look at in the mirror. Weight gain is also courtesy of the steroids. Like its not bad enough to be bald, I have to be uglier, too. But.... Alas, treatment is saving my life. I'm grateful. The hair will grow back, and with a little discipline, those extra pounds can be taken care of too. I'm also amassing a majorly gorgeous scarf collection, which should transition nicely into my fall wardrobe once I have some hair and no longer need them. 

More good news is, some friends here are having a benefit. This is going to help us tremendously, emotionally and financially. The bad news is, my friends and family from home pretty much suck. Oh, there are a select few. If you're reading this, you're probably one of them. You know who you are. Those who are brave enough to actually pick up the phone. Friends get a pass on visiting, but family does not. And I have yet to receive one family visit. It's fine, its cool, its just fucking goddamned cancer. No bigs! I'll be just fine! (Is the sarcasm shining through effectively?) 

After I wrote my last blog, the response was overwhelming. Every single comment surprised and touched me in a special way. It made me realize there are a lot more out there of you than I knew, and that means more than any words I could possibly spin to explain. I am humbled, and "thank you," is the best I have. With each and every additional comment, tears were welling in my eyes. To know you're still here and pulling for me, means the world to me. 

Tonight, I'm blogging from the guest bed. Jack has developed a penchant for sleeping with mommy and daddy, and since I have the infusion pump/huber needle situation going on, I don't want to risk him pulling it out and/or a leak situation, which could be really harmful. He normally sleeps within inches of the site. So, he's with Daddy, and I'm over here cuddling my fur baby Beau. Lola is also banned, although she's a great cuddle buddy, because she gets a little thrashy and could pull out the line. Actually, come to think of it, Lola is the number one candidate for accidental chemo rippage and spillage. So, she's downstairs in the princess suite.

 I've been up since my four am bathroom break, when a case of the "what ifs," got me and I lay here worrying. My metho is set to stop this time at 6:15 so by the time it was 5:30 sleep was no longer an option. So I came here to talk to you guys about it. I haven't blogged as much since there is little to report. I am definitely experiencing more sadness and frustration as we near the end. It was probably impossible to maintain such a cheery attitude all along, but I'm still trying to stay positive. I know I can beat this and I've been able to avoid the "why me," kind of BS sadness. But I have a little daily cry. And I say its not fair once in awhile. But then I look at baby Jack and this all seems worth it. I would do it all again for that amazing little boy. 

It's time for my infusion to stop, so I gotta go wake up Jim and have him unhook me and flush out my port and all that good stuff. Then, I'm hoping to catch some zzz's before my visiting nurse gets here at 7:30. 

They did a blood draw yesterday, so I will have a number to post from the home lab tomorrow, but not the Mayo until later in the week. I will update as soon as I know. 


  1. Ok, I finally have my computer back so am able to post. For some reason my phone was not letting me.

    Every day I come to your blog. Every day I send up a prayer. I know that you thought some of us had disappeared. So not true. We are your silent prayer warriors, your battle buddies and your ears/shoulders when you need us. Most of us have never met you in person yet consider you family. I can only speak for myself but I am sure others will agree when I say that I have been here since the beginning and I will be here til the end.

    You and your family are truly inspirations to us all. Thank you for sharing this journey with us. Jim - thank you for being the amazing husband and father that you are. You are an incredible role model of showing your son what a real man should be. Jack - what can I say besides the fact you are just the sweetest, cutest little guy ever. Keep up the snuggles and loving on mom.
    And Kathleen - F**k cancer. You have this amazing fighting spirit in you that we should all hope to have if we were in your situation. You have been incredible with your upbeat attitude. But you are human. You are allowed to be pissed, hurt, confused. This means you are alive. Please do not ever feel alone. We are here for you whether you are happy, sad, pissed or craving a cheeseburger (which I agree that Five Guys burgers are AMAZING!).
    You are a beautiful person. Keep up the fight. You will win this. You will kick cancers A$$!!

  2. I was in the April 2013 WTE group but didn't really post. I read about your blog on the forum yesterday. I will check back every day for updates and will pray for you daily. I'm on your side, even though we're strangers, and I'll be here the whole time. Love and blessings and peace to you.

  3. Amanda- your post made me cry. And, yes, I feel the same way. We all love you and are here for you every step of the way.

  4. And this link is for your chemo business cards. I think that's an awesome idea and totally think you need to do it - and then blog about it, of course!!! And post photos of people's reactions. Will be priceless, I'm sure.