Showing posts with label obamacare. Show all posts
Showing posts with label obamacare. Show all posts

Saturday, November 12, 2016

One chemo and 3 radiation visits down...

Life has decided to see how much I can handle without fully losing it lately. And it has been a lot.

On top of moving into my own place (oh my, the unpacking is a disaster!) I had scans, appointments, the election, a tooth pulled, radiation consults, doctors appointments, radiation and chemo. 

Lets talk about scans and results. Scans now are definitely more stressful just because I know there is disease and so it isn't a matter of if there is it is a matter of if there is more. Sadly on these scans there is more. My neck is looking good after surgery but there is a slight shadow that they need to rule out. What they are ruling out is whether or not it has spread to my jaw bone. In order to determine this I will be having a bone scan on Monday. I am not showing any signs or symptoms that this is what is happening, but again, we have to rule it out. As for my lungs they are stable still, unchanged. My brain has grown and there is an additional lesion. So there are two brain tumors in there. Both are small enough and in positions that I shouldn't feel any symptoms from which is reassuring. Because I now have a second brain lesion insurance has approved my SRS brain radiation and we will be doing that in the next coming weeks. 

I went in to what I thought was just a trial run of radiation but ended up being actual treatment. There is a lot of lining up and measuring and such and then the actually radiation (if all goes as planned) is about 10 minutes. I have now had 3 of my 20 sessions. I can feel a little tightening in the skin and heat, so we shall see how the remaining sessions go.
You can see the impressions left on my forehead from the mask

Chemo was a long day as well but things have been good so far. I got there at 8:20 and drugs didn't start until 11:30. There are a lot of labs and pre-drugs you need to take before starting the actual chemo so things take a real long time. A lot of hurry up and wait. The chemo I am receiving is new for me and is called Carbo-Taxol, a combination of two drugs. It is a very common chemo combo (say that a few times fast) for many cancers so we have a good idea of what to expect. So far I have felt pretty good. I have been tired mostly and have some waves of nausea but it is all managable. Hair should be starting to fall out around the 30th I'm expecting, usually 20-21 days after infusion. Even though I know it is coming, I am not really ready for it. again. I know it will grow back, but it is just such a blow to my confidence regardless, no matter how positive you try and stay. I am happy though that it is going to be winter and I can wear warm beanies the whole time. 

Now to the election. I am proud to say that I voted for Hillary Clinton to be the next, and first female, president. I was so beyond excited that I got to vote for a female to run our nation and was also excited the polls weren't too chaotic when I went. Emotions were high for everyone - on both sides so the day was a little stressful. I wore a silly shirt (Timberlake/Fallon 2016)
 to lighten the mood which helped a bit. And then the polls started closing, and being called. And all you could see was red states/victories. Just like that I felt punched in the gut and America elected Donald Trump to be the president. I read the news when I rolled over in bed at 2:12 am and saw it was called and am surprised I was able to fall back asleep. In the morning it took a lot for me to get up and at 'em for my appointments as I just couldn't believe it. And then it hit me like a brick. I could be without health insurance sooner than later, all because of the person in office. I literally felt at that moment that he held my life in his hands. I have been beyond lucky to have not had to work full time or at all while fighting this fight and it is all due to the luxury of the Affordable Care Act (Obamacare) without it I was denied coverage for being a preexisting condition and I had to work in order to be covered at all. I just felt in that moment that I had been stripped of my right to fight this the way I want to fight it, to treat it as a full time job - kicking cancers ass. And so the tears came, and they didn't stop coming for a long while. I asked my doctors while they were telling me I may have bone lesions as well as additional brain lesions, what I will do if I lose my insurance? I know nothing happens overnight, but in that moment I felt less than, I felt like a target and in a sense a minority. I truly don't know the last time I cried that hard and for that long. As the dust has settled in the past 5 days since the election, emotions are still high and questions are still being asked. He has said he wouldn't appeal the entire law, and keep the preexisting conditions as a non-issue going forward, which is good. Still doesn't mean I am not still terrified for what is to come. I just know that I have to keep up my fight here and hope that it will be able to continue.


Things are finally getting settled in my new place and slowly there are less and less boxes to go through. I am still on the hunt for a couch but I have my bed and lounge chair so I am good for a bit. TV is up, just need to get the DVD player working and get some internet finally and we will be in business! My family and friends have been so great and helpful with everything, seriously would be a disaster if it weren't for them.

Thursday, February 4, 2016

#worldcancerday and cost rant

Today, February 4th, is #worldcancerday. It is a day to not only get people talking about cancer, but to acknowledge all those fighting - whether directly or indirectly. For the past two years this day has fallen close to some very prominent events. Last year I had just been rediagnosed and was getting things in line to start my fight again. This year I am still fighting and I just lost my dear friend to this horrible disease. February is just a very hard month for me it seems. I have major life changing events happen in February - whether I like it all or not. Regardless, World Cancer Day seems to fall perfectly into my cancer story. I am glad there is some more awareness being talked about.

I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29

Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!

Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!


AM Pills: $176.23 PM Pills: $457.67
*if I didn't have insurance that is



Wednesday, December 23, 2015

Scans and Big Appointments

I had my MRI and CT Scans last night (8pm what?) and this morning and also my appointments with my entire team.
The good news is that besides my neck, the cancer has not spread. The bad news is that in my neck there are now 7 tumors, all growing. 7 f’rs. No wonder I have had so much pain lately, there isn’t any room for them all!!
I officially withdrew from the clinical trial and had to verbally state “I refuse drug today and going forward, I withdraw from the study.” Kinda strange but I get it. Then all my appointments started. I was happy to have my mom and best friend Ashley there for the appointments, definitely helped break up the day and make time go faster.  The doctors talked about the next steps and drug options. I came into the appointment dead set on starting Keytruda and hoping to start the following week. They then presented another drug option which actually is 10% more effective than Keytruda. It is a combination of Nivolumab and Ipilimumab given for 4 treatments (every 3 weeks) and then just the Nivolumab after that for 2+ treatments. This works the same as Keytruda alone, but with an added kick. It is also harder on your system – but also harder on the cancer. There is also a third option after the combo or Keytruda, which is a BRaf inhibitor since I am BRaf positive (a gene mutation in my tumors). Although this has proven to be effective, it is only effective for 2ish years and then the cancer returns. It is more like a Band-Aid in my mind.
I have decided to go for the combo – and we are pretty sure the insurance will deny the drug so we are going to petition for free drug if that is the case.  I should know in the next day or so (but Christmas kinda messes up the timeline) but I will have to see!
For now I have to do a biopsy for new drug and to end the study. I hate them with a passion!! Hopefully it is the last one I have to do. And that I start treatment next week!
Gotta start killing off these f’rs in my neck!!

****Update****

Well that was quick, they denied the combo drug within minutes. The reasoning is cost and that I have already received one round of Ipilimumab and it isn’t usually given more than once. We have now sent in an appeal and a petition for free drug.  Hopefully we hear back soon on their answer.


Monday, June 1, 2015

Little Rant

So I have been waiting for the bills to come in from biochemo to see what the dent is. I am on my own insurance, Obamacare persay, that I got on my own - not through my employer. I am a full supporter of all the progress with insurance and Obamacare - without it I would not be able to have insurance due to a permanent spot on the “preexisting conditions” list (thankfully that has been done for a few years!) Regardless, I have good insurance that I am very happy with. Onto the rant…
I got the explanation of benefits (EOB) for chemo and was BLOWN AWAY! For one round of my chemo they charge the insurance $83.8K! Unreal!!! And the allowed amount is $50.4K… The difference is more than I made the entire year last year. Keep in mind I did 3 rounds of this… That’s $251.5K ($151.4K after the adjustment) in treatment… an entire house! A really nice one. So my upset is that if I didn’t have insurance how would I even come close to affording even one round - thus the flaw in the medical system. People would still (hopefully) get treatment and then claim bankruptcy causing the cost of health care to continue to rise or wouldn’t get treatment and succumb to the disease. Just sad. 
All this said, I am not sure what my portion will be of this, just waiting to see. I feel so bad for the people who can’t afford the same coverage and treatment as I do. I am lucky that I have been able to have coverage my entire life (minus a short 5 months - and just not having it for that amount of time scared me too much). 
I am scared for what the next president will do with the healthcare system, but hope I can keep my status as insured for the rest of my life. 

End rant.