February 22, 2018
Today was my last of 3 appointments this week. I met with my Doctor first, who told me there is zero evidence of any new or progressed cancer. My tumor has shrunk by nearly 90% with what remains being potentially dead. The tightness and dry cough I had been experiencing are/were a result of scar tissue caused by the radiation. This is all good news and I’ll take good news. Today was the first time to have my new port accessed, and I was nervous I won’t lie. It still hurts from being placed, mostly my neck but also the port itself. And they don’t give numbing cream anymore because someone had a seizure 😳 The Huber needle is intimidatingly big, not like an IV. It was not horrific though, one sharp deep stick and done. And because my port is so new it will likely smart less as time goes by and the area heals. I brought all my people the cupcakes and they loved them. After arriving back home Brian and I went to dinner at Texas Roadhouse with our good friend Jim, in town and visiting for a big EMS Today Conference. Yum! Overall today was a very good day!
Now, if I could just sleep at night! I don't know if it's the new and higher dose of medicines, anxiety or what but for the past few weeks I'm lucky to get 3 full hours each night. I am almost always awake between 1:30 and 5:30, and can't fall asleep before midnight. When I don't have to work I can sleep in until 9 but when I do I'm up and moving by 7:30. My doc suggested try something simple like melatonin to start and see if that helps. If not we will look at something more substantial like Ambien. Our joint concern is adding drug upon drug, as nighttime is really the only time I take meds, but they are hefty for pain. We don't want me to accidentally forget to wake up in the morning! SO we shall see how the next couple weeks are and go from there.

News On the Battle Front

February 14, 2018

What a really great day. I had fun as always at work. I received a wonderful treat of chocolate covered strawberries from princess Ashleigh, chocolate chip cookies from my momma and Dougie, and a beautiful gift along with the most delicious scallop, baked potato and broccoli dinner from my guy.
So some news on the Battle front. I went in for my infusion last Thursday and after 4 unsuccessful tries at an IV we all gave up. Thankfully the doctor said he was okay with me just waiting until my next scheduled infusion, which will be a week from tomorrow. Unfortunately though, because of my history of really small veins he asked me to please consider allowing them to place a port. It’s basically the upgraded version of a picc line- instead of the catheter ends hanging out on my arm ready for use, an incision is made in my neck near the collar bone and the catheter is fed into a main vein that leads to the heart, and then the end is attached to a quarter-sized disc that is placed under the skin in the chest. Pros to this are no ends hanging out to worry about, more permanent and allegedly easier to basically live your life. Cons are it’s a surgical procedure with higher risk of infection, can cause more initial discomfort and you still get poked every time they access it, although they won’t “miss”.
My very first response was that I would only consider it if they agree to do the procedure sans drugs and sedation. In other words I get to remain completely coherent and thus an active decision making participant. We will be doing this with a simple Novacaine and nothing more. It is my personal opinion that the majority of the time a cocktail of drugs is used far too often and more for the benefit of and to make it easier for the doctors and staff, not the patient. I am aware that most people would rather be rendered stupid and I appreciate that. I am not like that but rather the 1% of people who prefers to be in control and able to make my own decisions should the need arise. Yes, I know that I am one of the medical worlds biggest pains in the ass, but honestly I don’t care. I am my advocate and not theirs. My doctor (who I already told you I love) mostly just chuckles, but always says he’d rather have a patient like me than one he can’t have a frank conversation with, or one that has no clue. I really am blessed to have been matched up with him and his team.
So moving on to my other worries. Most of them are vain and I feel bad for that when I need to just be thankful. But I do worry because I’m human... I just finally have gotten to a point where I’m not obviously “a sick person” when I walk around. I have hair again, really really short but it’s there and just looks like I have bad taste in styles. I’m okay with that. I’m not pale and blah anymore. The picc line is gone so there’s nothing else to stare at and bring attention to me. A port is pretty obvious, and will be even more so as summer approaches. I was really looking forward to wearing my happy tees and tank tops and getting a little color. Basically starting to get back to a little bit of normal. That chance is gone again now because anyone with eyes will notice the port. And yeah, I know it’s vain and dumb but it’s a feeling and it makes me a little sad to think about it. My doctor told me if anyone ever looks at me “just tell them to fu*k off”. Literally verbatim his advice. Ha ha I do love the guy. Anyway, my other worry... this ones a doozy and I laugh at my craziness a little bit. So, any Greys Anatomy lovers out there? There’s an episode where Meredith is finishing treatment with one of her patients, a cancer survivor. Her last step before leaving the hospital and getting on with her life is to have the port removed. Last bit of evidence of her journey. Long story short? Her port had gotten infected so when they tried to take it out she bled to death in an elevator on the way to the OR. Talk about a shitty ending to a brave battle fought by a cancer patient. I know I’m a dork, but the show isn’t all fiction and crazy things like that can and do happen. So I worry.
But the other night when I should’ve been asleep I had a really long talk with myself. I explained to me that while yes weird things happen it’s not the norm and it’s not going to be me. Yes, you’ll be able to see the port, but like the good doctor says, anyone who needs to look can fu*k off. You will be proud of your body and proud of the fight you are putting up. In the end this will be nothing more than another little battle scar that you will wear with pride. And you are not getting any drugs in the OR so anyone who steps out of line will get a swift kick in the ass. Amen. The port goes in on Monday afternoon, and I do have lots of drugs at home so if I’m sorry later I can take some and go to bed. I have a CT scheduled for Tuesday to check the status of my cancer, and treatment on Thursday. Busy week for me. I will keep you all posted.