Tuesday, September 17, 2013
Yet another frustrating roadblock .... I have two rounds of EMACO to go, went today and was told my liver enzymes are up and it's too risky to give chemo .... So a week delay at least, watching the liver because obviously liver failure would be terrible. I'm still having a blood transfusion tomorrow.... So disappointed because I just want this nightmare to end.
Hey, kittens. This is going to be a short post - I've been feeling pretty exhausted lately and my brain just can't come up with lots of cleverness. But I got a lot of comments today so I wanted to update you guys, I'm still here and everything is ok. I completed my 15 calendar days of work yesterday. My short term disability claim has already been approved and the best part? My coworkers alone donated over 200 hours of leave to cover my elimination period. That's the first 30 days I will be out, where I needed leave to cover due to no longer having FMLA. FMLA is only 12 weeks per year, and I used mine when Jack was born and in the first few weeks of being diagnosed. But, now I have nothing to worry about because I have so much leave. I needed 165 hours, and they haven't even tallied up the amounts of leave from our upstate unit, so, I'm more than ok. People were so generous and I am truly lucky.
I have chemo today so maybe I will blog a bit more from there. Tomorrow is going to be a long chemo day, since I'm having a blood transfusion first thing. I'm getting more anemic, but have been getting neupogen after each round of chemo, which has really improved the white cell count situation. Before chemo, Sandy (Jim's mom,) is making us peanut butter and jelly pancakes. So, I should probably get off my lazy bum and shower so I can head over there.
Thanks to everyone for reading and for checking in with me today -- it really means more to me than you could possibly know. Sorry I've been such a remiss blogger. I'm trying to be better.
Friday, September 6, 2013
I came back to work this week. All I can say about going to work full time, being a mommy, and having chemotherapy treatments, plus traveling to the cancer center an extra 3 days for neupogen is.... DAYUM. I can't believe how exhausting it is! Not to mention, how hard it is to leave my little Jackleberry. I just called Jim to check in and he put the bay on speakerphone. Apparently, in addition to making the cutest, most heart string tuggin' noises ever, he attempted to eat the phone. Although eating any object placed within his reach is his big, new move these days. Jim said he was looking around for me. Cue the mommy tears.... So, please forgive me for not bloggins. I have been a bit busy. I just wanted to write a quick update to let you know I am still here, trucking along. The deal on work is, after working 15 days, if I feel like I am not handling it, I can go back out on a new short term disability claim. Unfortunately, I have used up all of my FMLA time, between baby and you know, cancer. So, if I am unable to obtain enough donated leave time, I will be forced into long term disability (again, which means I lose my position.) So, that pretty much is a big old ball of stink a roo! So if you live in Delaware, and work for the state, and want to give me time, hit me up! I'm just hoping it all works out. I can go back to work after I'm done with chemo, and I want to. Isn't it sad when the system screws over someone who is just trying to get well and go back to work? Tonight I am on 4pm-12am and its about halfway through my shift. I am actually blogging from my desk, and we are pretty busy tonight, so I'm the only one at the office right now, covering the phones. My boss has been very accomodating and let me know that I can try to lay back and take the phones at the office, whenever possible, on account of the lacking white cells and such. I know you guys are dying for the dish on how it is being back and how everyone is treating me, and the deal there is everyone has been very kind. It is sort of awkward though! Some people want to hear all about my story and I can tell, others are just plain freaked out and seem to almost avoid me. So far, the hardest part is wearing a scarf or hat. My head gets really warm, but I'm not bold enough to go bald just yet. I just want chemo to be over so I can get 1/4 inch of hair all over my head and start using my fab scarf collection as it is intended- jazzing up my work uniform!! I hope everyone is geared up for a fun weekend. I'll be working 1pm-9pm tomorrow, but off Sunday for the start of football. I can't wait for a little sleeping in, followed by watching football and snacking with my best boys, Jim and Jack. Go Bills! PS, sorry for the formatting of the blog. Since I am using my work computer, its making it look a little funny and I am trying to figure out how to fix it but am totally technologically challanged! xo
Wednesday, September 4, 2013
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.