This page is a work in progress. Just some quick notes I have jotted down on my short journey thus far.
1) Anyone can get Melanoma. I have no family history of Melanoma. I have never had any blistering sun burns. I wear hats and sunglasses and sunscreen whenever in the sun for prolonged periods of time. I have “followed the rules” of good skin care with the exception of a using a tanning bed a handful of times (before prom in high school) and here I am now. The mole on my back was not in a spot that is frequently exposed to sun. There is a lot we still don’t know about melanoma but don’t assume you are safe because you do all the right things. You can even get Melanoma in your eyes (ocular melanoma), on the soles of your feet and palms of your hands and under your nails. Bob Marley died from a rare form of melanoma under his toe nail when he was 36 (thanks Lege for that tidbit).
2) Get multiple opinions on debated medical topics – like spitz nevi vs. melanoma (especially if you are beyond puberty as a women). The lab that read my diagnosis wrong in 2010 was a very well respected lab in even in the eyes of MGH and DFCI.
3) Be well informed and educated so you know which questions to ask. Write down your questions and bring them with you to your appointment.
4) YOU are your own best advocate. Do the research, ask questions. Make sure you get a physical examination (make sure they touch you!) If it doesn’t feel right to you, if things don’t add up then do something about it. Get another opinion. If I hadn’t pushed I would still have this tumor under my arm and I could have been dead a few years later.
5) Always bring another set of ears with you to your important appointments. I called my dad and put him on speaker phone when they surprised me with my cancer diagnosis. It was super helpful as a million thoughts flood your mind at once.
6) Research your medical care and team. Make sure they are a right fit for you. Especially if this is a team you are going to be seeing long term.
7) Wear sunscreen, re-apply frequently, wear sun protective clothing and never go tanning. Take pictures of any moles that seem strange or new to you and make regular appointments to see a dermatologist, even if you aren’t suspicious.
8) If you have MassHealth and are signed up for a connector care plan and that plan is through CeltiCare – CHANGE IT IMMEDIATELY. Before I was even diagnosed with cancer I had trouble getting regular antibiotics or prescriptions I had been on for years with CeltiCare. They don’t want to spend money on anything or treat anyone. Then once I was diagnosed with cancer I could not get treatment anywhere without a prior authorization, which would take at the minimum of 2 weeks to process, and was probably going to be rejected. It turns out that if you have masshealth and are on one of the connector care plans, you can change your plan over the phone, at any time in about 5 minutes! I switched mine to Neighborhood Health Plan, which is accepted by MGH and Dana Farber, and allows me to get all my prescriptions without jumping through hoops and spending hours on the phone with doctors and pharmacists and insurance assholes. Change it now, if you have celticare, so that when you actually need health care you can get it.
CT scans and Brain MRI’s – My experience and what to expect
I wrote this section because when I had my first scans I did not receive the patient-teaching I would have hoped for and therefore the experience was more scary than it should have been. So here is my “heads up” to all the readers (if there are any) who were just diagnosed with cancer and are wondering what to expect when they go for scans … Or maybe for health care providers who are interested in scans from the patients’ point of view . Or just for the silly people that want to read excess details about scans.
Before the CT scans I have to drink this giant barium shake that tastes chalky and gross. A CT scan takes many computerized images that show cross-sections of the body. Once I’m on the table they inject contrast dye into my veins to help the organs and vessels show up better in the images. I wish someone had told me the first time I had a CT scan that when they inject the dye, you feel this strange hot/flushing/burning feeling in some parts of your body. I didn’t know that was normal and thought I might have been having some weird reaction. So all you technicians out there, please inform your patients because it is really disconcerting to discover this “sensation” in the middle of the test, when you just found out you have cancer and are laying on a freezing cold table and it sounds like you are about to blast off into outer space. First they take pictures without IV contrast and the machine tells you when to hold your breath and it moves about above your body. It does this a few times. Then they inject the contrast and thats when you feel the burning sensations/flushing all over your body. It feels like you are peeing in your pants. It is really strange. My CT nurse warned me about all these things but it was clear they were behind schedule so when she flushed my IV, she did it so fast that it felt like my veins were bursting and caused a lot of pain. So another tip to CT workers and nurses alike, even if you are running behind, please do not just jam your thumb down on the flush, that shit hurts and causes a really gross taste in the patients mouth. Saving 3 seconds doesn’t make that much of a difference.
The MRI people are always really nice (my experience from the 2 times I’ve had MRI’s in my life). Probably because they are about to put you in a tiny tunnel where you have to lay perfectly still for 30-45 minutes while obnoxious loud noises go on all around your head. Even though I am not a claustrophobic person, (though I am a squirmy person), by the end of the exam you are dying to get out of that tunnel. They put an IV in you,strap your head in place, put a “helmet” over you and stick ear plugs in your ears and send you headfirst down the tunnel of doom. The first time I had an MRI, the technician apologized to me because they “don’t have the music option.” I would have rather been ignorant to that option, because knowing that there is something better than extra loud spaceships noises all around your head sounds glorious. I have never had option, but hope I get to experience it within the next 10 years of scans. Luckily they give you a little alarm to squeeze if you need them from way inside the tunnel. I imagine lots of people squeeze the alarm. There is a mirror on your helmet so you can see the front of the room (outside the tunnel) even though you are just looking up. The tech talks to you through a loudspeaker and says things like this one is 2 minutes, or this one is 5 minutes, etc. You learn pretty quickly that “this one” means the bout of weird sounds where you have to lay perfectly still will last that amount of time. It goes on for a while, they bring you out, inject the contrast, and then send you back in. This time there are no weird sensations with the contrast, also you don’t have to drink anything crazy before the Brain MRI.