Lines In the Sand

Today I’m getting my last AC chemo treatment and I feel on top of the world. Once I get home and it kicks in I will feel under the world, but right now I’m riding high while hooked up to my last dose of this brand of poison. I want to high five everyone.

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Inside I’m smiling, I swear.

The first dose made me feel like I couldn’t do this and want to give up, which I didn’t because I decided to get through it for A. It was brutal every day and I couldn’t see how I’d get through 7 more treatments. Thankfully each one has been easier. None of them have been easy, but they’ve gotten better. First we figured out that one of the anti-nausea meds was making me sick and that having me come in on day 4 for fluids and a re-up on the anti-nausea meds helped a lot. Then we figured out that I needed another day on what I like to refer to as the “scary” anti-nausea med (responsible for that night I didn’t sleep) and it helped again. Now my fingers are crossed as I finish my fourth and last dose of AC that it continues the easier trend. It would be helpful because a week from tomorrow I’m getting in the car and heading out for New Orleans and the planned 14 hour first leg of the drive is going to be a bit tough if I’m not feeling human.

I find myself using the phrases “feeling human” and “feel like a person” because cancer treatment takes this feeling away. It takes away choice, control, power, health, and appearance. It can reduce you on a bad day to something you don’t recognize. I relate feeling healthier and being able to eat as “feeling human”. I relate making plans and not feeling/thinking about cancer during that time as “feeling like a person.” I enjoy both of these when they happen and look forward to when they’ll be the norm. I’ve already decided that I won’t do the reconstruction surgery until after Mardi Gras. That gets to be my first big thing to look forward to after cancer that I get to be a person again and take my niece and nephew to parades and have fun and not think about cancer. It’s going to be awesome.

Today is my last chemo appointment at Dartmouth, but don’t worry, I’ve got four more days I have to come back before I leave it in the rear view mirror for 2014. There were still some sad and interesting moments today though. I had a really good PT appointment. I love my physical therapist. She is such a wonderful person and really really good at her job. I haven’t had an easy or simple recovery from my surgery and she has made a huge difference. It’s also tough being touched where the surgeries took place due to pain, numbness, and mental hangups and she makes it so easy to work with her and not even think about it. I got a little teary eyed saying goodbye to her today and I feel very fortunate that I got to work with her. I also have improved to a really good degree which makes me feel good about how things are healing. I can’t put my arm straight out and raise it up above my head, but I can get it about 70% there which is a huge improvement from when I started and awesome since I’ve done very little of the exercises outside of PT because of how I’ve felt from chemo.

Today isn’t my last day in the Infusion Suite since I’ll be here Friday to get fluids and anti-nausea meds to get me through the weekend and then Tuesday I come back for my protect my ovaries giant shot in the stomach. Always a party with me. However, I do have a story from today…

But first to put it in context, a brief blurb about insurance. I know that some family and friends are republicans that read this and that’s cool. I don’t consider myself a democrat because they’re just as corrupt, but I definitely wear my Bleeding Heart Liberal tattoo with pride. It’s on my ass in case you were wondering. So Obamacare… I am the first person to recognize that this needs work and is far from perfect (seriously, I have a certificate), but let’s move forward instead of backwards. Here are my personal experience with this that will hopefully help anyone feeling anti warm up to the idea.

1. I originally wasn’t even going to get tested for the breast cancer gene because I was worried it could be used against me as a pre-existing condition. Legally, insurance companies can no longer hold pre-existing conditions against you as a reason to not insure or charge you more. This is fucking amazing. Seriously. Fucking amazing. As someone who has breast cancer at 30 this means that I can look forward to fair health insurance for the rest of my life (as long as it doesn’t get fucked up by the politicians). This means that people with Huntington’s Disease can get insured fairly, this means that so so so many people with medical conditions that they were born with and can do nothing about can get fair access to health insurance. I love this.

2. A. and I quit our jobs so we could longterm move to New Orleans. Because of the Obamacare market place we were able to say ‘no thanks’ to our $400-500 a month COBRA insurance (although now I’d take it) and purchase insurance right away that was more affordable and tailored to our needs. A. is on low tier because he’s not paranoid like me and I’m on the gold level (thank god since I got cancer while on it) which means that I pay a lot more, but my deductible and out of pocket aren’t crazy which makes a big difference in our current situation. Being able to purchase insurance at different tiers and compare to other insurance companies is a good step in the right direction. The thing I would change about this is that it should be the same tiers for every state. I’m moving to a red state with a psycho governor (look for him in the next presidential election) so the insurance selection in Louisiana are much poorer than the ones in California. This isn’t fair. Every America deserves the same insurance opportunities. Like my insurance CIGNA covers me in Louisiana, but it isn’t offered there, so January 1st I have to get completely different insurance.

3. You have 60 days after moving to a new location before you need to change your insurance. This is saving us thousands of dollars and I can’t even put a dollar amount on the stress it would add for me to have to get new insurance mid-chemo cycle and need to get everything approved and setup in the very short time I’d have before my next treatment. We’d have to also start over on out of pocket and deductibles and then start over on those in January again. Just bad news bears. So again, this is fucking awesome.

As I said though, it’s far from perfect, but let’s not throw the baby out with the bathwater. Let’s move towards making healthcare less of a business. The hospital should not charge one person $45,000 for something because they don’t have insurance and the person with insurance get’s a discount so they and their insurance only pay $13,000. One cost for everyone and equal access to insurance. Let’s start there.

So anyways… The lady next to me in the infusion suite was hella chatty. I knew I was in trouble whe she pulled the curtain divider back. She also didn’t really have anything interesting to say, just wanted to talk and talk and talk. I wasn’t feeling too hot so I put my headphones in and checked out the new Taylor Swift album and some great playlists my friend Mark made. A. made the sacrifice and listened to this for a couple of hours. Maybe 3. Some gems during this were “how long have you been married” (completely out of the blue, no conversation was going on about this), “How old are you” (same, totally random), and the diamond from Aladdin level question “What does she have?” referring to me. YOU NEVER ASK THIS QUESTION. Never ever ever ever ever. People will volunteer this if they want to, but you never ask this in the cancer ward, let alone when people are getting hooked up to chemo. Regardless of appearances, you have no way of knowing what it is and what stage it is (see Brittany Maynard for example who looked young and healthy).

From there I finally heard something that led me to enter the conversation briefly. Moving on from inappropriate questions like, what kind of cancer does your wife have?, she moved on to sharing that she’s hoping that Republicans take over this election. I told her that I like my insurance and that Obama’s policies made it illegal for insurance companies to discriminate against preexisting conditions which will be the story of the rest of my life because of breast cancer. She then listed off 3 or 4 non-cancer conditions that she has (and I didn’t need to know) and was like, oh that’s probably me too. She was shocked that we bought Obamacare and let us know that she gets good insurance through her husband’s job. I’m sure that’s very nice. The thing that made me laugh sarcastically in my twisted little heart was then she went on about how pleased she is about her daughter being able to still be on their insurance in her 20s (another policy created in Obama’s term). Apparently he’s fucking up Isis and Ebola, so it’s time to seize control. I was bummed that we missed the opportunity to tell her I had ebola when she asked about my condition. Next time…


One comment

  1. Oh! My heart goes out to you! I hope and pray you heal quickly and it never comes back. I really love your humor and strength. How you can take out the time to write this in spite of how you feel. And I love your conclusion, it made me laugh out loud. Stay strong & awesome.


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