It's a patchy rash that feels like a slightly worse than normal sunburn, but not a severe sunburn. And from a distance it looks like a burn. But in the immortal words of Alicia Silverstone, "up close it's a big ole mess!" It looks like hundreds of little pimples, it's so icky. But the key is it's not acne, it just looks like it so you can't treat it as such.
So I just gently clean it and keep it moisturized. I just control the itchiness because that I can see getting annoying. I'm actually really happy that I still have my hair at the moment, because there'd be a kinda lizard affect going on. But now I just look like I have adult acne or a rash. Now this is where chemo t-shirts come in handy. Cause then no one will think I'm contagious.
It's not a sympathy thing, just a look I normally don't look this gross thing.
It has gotten pretty severe in the last couple of days, but again totally bearable. However I decided to read about it online and found how many people stopped their medication because of this rash. I can't believe it. I know it's hard to deal with so many changes to your body which you have no control over, but the attitude I encountered online has seemed so odd to me.
These people are mad at their doctors for this rash. Stopping it against orders. Stopping it knowing this is a medicine that is literally keeping them alive. And understand I am not talking about people who have been battling their disease for years and have just had enough of it all. I'm talking about people who took the tarceva for 2 weeks and said, no way, I ain't dealing with pimples. This is unreasonable.
I just can't believe. I hate judging others (wait what?) but here I go. I just think about all the research and dedication that went into the discovery of these advances. I know that drug companies make a fucking fortune and they aren't in it for the good of humanity per say. But many of the doctors and scientists behind these advances are. They are on a quest to understand the complexities of disease and work to unravel its mysteries.
There's a book that you need to read, it's called The Immortal Life of Henrietta Lacks. It's a true story of a woman who unknowingly has saved and continues to save millions of lives. Ms. Lacks was a poor black tobacco farmer who died of an incredibly vicious cervical cancer. In the days before patient consent and HIPPA laws, just before she had her surgery, unbeknownst to her a scientist, who believe it or not, had truly noble intentions took two tissue samples from her. He took one sample of her healthy cervical tissue and then he took a sample of the cancerous tumor. And left to his lab.
In his laboratory the healthy cervical cells died after a couple of days, like healthy cells are supposed to. But Ms. Lacks cancer cells thrived. They multiplied in almost any environment. It was a huge break through. They had developed a line of human cells that could thrive in many environments. This meant that experiments could be performed on tissue in a controlled environment. It's important to note that the scientist who took these samples made almost no money off of this advance, because he was just so happy he was able to get a never-ending source of cells to grow and they travelled well so they could be sent to other labs doing very important work.
It is also important to note that Ms. Lacks and her decedents never saw a dime and lived in poverty and in the worst of ironies, lived mostly without health insurance. Ms. Lacks, despite receiving care at the John's Hopkins did not survive her fight. She did however face the fight with a strength and dignity that is truly inspiring. But the worst part of it all is, she'll never know the tremendous impact her contribution has made to the world.
Ms. Lacks cells are responsible for the polio vaccine, chemotherapy, our understanding that cancer is not a virus, but a genetic disease (genetic, not hereditary, the problem lies with the genes in one cell going haywire), they played a big part in the human genome project, and countless other advances. Her cells are called HeLa cells. They are estimated to have generated billions of dollars in revenue to companies who have used them to develop these advances. They have also wreaked havoc on labs as well. These cells are so pernicious they tend to hop on dust particles and contaminate research (a problem that persists today). It's completely fascinating stuff. The book is beautifully written and is as much about the Lacks' families struggle to understand what this all means and the shock of discovering there was a piece of their mother alive and contributing to the world and no one bothered to tell them for about 30 years.
These are not small things. I have these medicines flowing through me because of the contributions of countless people who worked hard to understand their field, people who have the true ability to make a difference. Save lives. Again, I know money is being made but I can't focus on that right now. I just focus on the fact that I am fortunate that I have health insurance. How does someone who just got laid off deal with a diagnosis like this. My first month's bill to insurance will likely add up to around 20 grand. First month people. My 10 min chemo costs 9600, 1 hour 98, taceva 4400, add in all the anti-nausea, doctor visits, lab tests, scans, biopsy, we're talking a damn fortune. Now I have coverage, so I am only expecting to pay co-pays. But how do I wrap my mind around the fact that people have to make choices like selling their house in order to save their own life or the life of their child. I just gotta be grateful.
Really I'm going to complain about acne? I just don't understand it.
So I look a little gross. I can deal. Ms. Lacks lost her battle but still found a way to save lives. I don't think that's a coincidence, I think that was meant to be. I just wish she lived to see it all, to know what she did, because it is no small thing.
Ok here's the photo of my face, enjoy! ;)
You should put on a bathing suit, sun glasses and go to florida, you will fit right in! Looks like sun burn from here! LOL Seriously....your attitude is awesome and will contribute to you overcoming this ordeal!!!ReplyDelete
Hang in there! Chick-a-dee! Keeping you in my thoughts!
as someone who has adult acne and roseacea, i can see how people can be sensitive towards developing acne. i mean, your face is the first thing people see, so it can be tough. hopefully they'll realize that taking the meds are more important than what their faces look like.ReplyDelete
you do look like you got sunburnt. i think you should tell people you just returned from vacation in hawaii. ;)
oh, and now i want to read that book about Henrietta! i've never heard of her.
Oh Lisa, I totally get it and right now my face is bleeding, so I ain't looking too good right now. But what bothered me were the people who didn't even wait to see if the medicine would work. You know? esp since they were posting in a forum of people who have been on this medicine for years. It's like, we're shrinking tumors people, if we have to do it with prickly skin, let's just do it!
You gotta read it, it's a great book!
I wonder what's going on there, with people who are facing serious life and death choices, and facing seriously debilitating side effects from Chemo and decide to self-treat and end drug therapy over a facial rash. I feel like there has to be some kind of motivation that I'm just not getting.ReplyDelete
BTW: I've seen that book 100s of times, and never knew what it was about.
I'm finishing up The Immortal Life of Henrietta Lacks and all I can say is EXCELLENT read!