A new playground to play in!
I know I have't been here lately, but it's been a rough year and time just seems to fly by. A couple of you wanted to know how things are going so I thought it was time for an update.
Last week I had my PET Scan after being on the chemo drug Erubulin for about 3 months or so. Turns out it wasn't up to the job of eradicating the cancer and was just letting all those silly cancers cells spread Willy Nilly all around. The tumors we originally had are growing back, Some new ones in the lungs and and some in the lymph nodes. And if that wasn't bad enough, it apparently let it's guard down further and let them get ino the liver, Ilium and a tiny area of the sacrum!! Well, my good Doctor immediately took this slacker drug and fired him on the spot. We decided on a new set of drugs. This set of drugs can only be used once in a lifetime. You also have to have a Echocardiogram to make sure your heart can tolerate it. Must admit I found that a bit daunting, but I trust Dr Moreno and know he knows what he's doing.
I couldn't start the drugs immediately (numbers had been a bit low so he wanted to give my body a chance to be stronger so as to tolerate them better!). I had been having some vision issues. (Imagine a Jack 0 Lantern mouth out of the peripheral part of your eye with bright colors pouring from it, and words with half the letters chopped out of them and you have no idea what you are reading!! Loads of fun!!) so an MRI was ordered! Luckily I went in on standby and got it and my Echocardiogram and my MRI done early on Thursday! I got a call the next morning from the Fellow who was taking the place of my regular doc (who was in Chicago at a conference! All my docs seem to go out of town when serious things are found!) and advised me that the MRI showed "numerous"brain mets (did you know there really isn't an equivelant number for "numerous", LOL). Well, it seems you cannot be on chemo and whole brain radiation at the same time, so my chemo was put on hold and they managed to rush me in to an appt with the Oncology radiation doc. Her game plan is 10 sessions of whole brain radiation. you have it every day except holidays and on the weekends. She and the fellow also determined I needded a steroid to help with the swelling in the brain from the mets. Now this is really fun. It's called Decadron. It raises your blood sugar A LOT, and it works like SPEED! So if you can imagine me as hyper as you have ever seen me and multiply that by 10, this gives you an idea of how I am right now. Probably not a good thing, but I did cook up a roast, homemade gravy and mashed potatoes Sunday night. I'm also talking a million miles a minute and have gotten a lot of work done around the house! I have to find out tomorrow if I'm still allowed to drive. I'm not sure if the mets prevents that or not. I noticed I still had some vision issues this evening so I'm not sure.
Whole Brain Radiation. The New playground I referenced in the subject. What a grand time that is. First they take you into the room where you get your treatments (looks like a CT scan room which is basically what they use.) you lay down on the CT table and they take this mesh material and wet it and put it on your face. they stretch it tight (it is mesh, so you can breathe) and cool it down so it hardens and makes a mask you have to wear for each of your treatments so they hit the right areas and you dont move your head. You then have this PLASTIC PILLOW thing under your head and it's like laying on a rock! (Gonna have to seriously speak to someone about that! Surely there is something better!! Maybe I'll invent one!) On the plus side (YES Virginia, there is a plus side!) They let you listen to whatever kind of music you want to calm you down and give you something to concentrate on! I asked for classic Rock and listened to The Hollies doing Long Cool Woman (a personal favorite), Tom Pettty doing Freefalling (probably not a great one for a table with no arms on it!) and Lynrd Skynrd doing Simple Man ( one of their best I think). As you can see, I got lucky and it didn't take as long as I thought it would . 3 songs worth. It's a bit creepy to lay there with something holding your face down, but with the music and the little ring they give you to hold on to, then it flies by pretty fast. The wierdest part of the whole thing is that when they did the radiation, I saw light "behind" fmy eyes. (my friend Dan says it's because nothing is in there and it was just bouncing around an empty space, LOL). I asked the Nurse, and she says that some docs think its the radiation hitting an optic nerve, but others think people just might be seeing it behind the eyes. I would of course be different, wouldn't I?
I had a bit of pressure in my head off and on today, but no other massive side effects so I'm guessing it's a good sign. I'm hoping it will go quickly and we find it works and then we can concentrate on the other tumors again. I refuse to give up! It's just a minor setback, that's all! I could of course sit around and cry (OK, I did do that a little bit one day!) but it's the way it is so one must make the best of it. I'm trying to just enjoy each day as it comes and hope I can keep it going. I read somewhere that if I can make it 5 years with the triple negative breast cancer, then I can probably make it 20! That's my goal!!
Hope you are all doing well. I will try to make it back here a bit more often and get up to date with everyone! Huge hugs to all and if I misspelled or it doesn't make sense, then I will use the radiated brain excuse!!
Last week I had my PET Scan after being on the chemo drug Erubulin for about 3 months or so. Turns out it wasn't up to the job of eradicating the cancer and was just letting all those silly cancers cells spread Willy Nilly all around. The tumors we originally had are growing back, Some new ones in the lungs and and some in the lymph nodes. And if that wasn't bad enough, it apparently let it's guard down further and let them get ino the liver, Ilium and a tiny area of the sacrum!! Well, my good Doctor immediately took this slacker drug and fired him on the spot. We decided on a new set of drugs. This set of drugs can only be used once in a lifetime. You also have to have a Echocardiogram to make sure your heart can tolerate it. Must admit I found that a bit daunting, but I trust Dr Moreno and know he knows what he's doing.
I couldn't start the drugs immediately (numbers had been a bit low so he wanted to give my body a chance to be stronger so as to tolerate them better!). I had been having some vision issues. (Imagine a Jack 0 Lantern mouth out of the peripheral part of your eye with bright colors pouring from it, and words with half the letters chopped out of them and you have no idea what you are reading!! Loads of fun!!) so an MRI was ordered! Luckily I went in on standby and got it and my Echocardiogram and my MRI done early on Thursday! I got a call the next morning from the Fellow who was taking the place of my regular doc (who was in Chicago at a conference! All my docs seem to go out of town when serious things are found!) and advised me that the MRI showed "numerous"brain mets (did you know there really isn't an equivelant number for "numerous", LOL). Well, it seems you cannot be on chemo and whole brain radiation at the same time, so my chemo was put on hold and they managed to rush me in to an appt with the Oncology radiation doc. Her game plan is 10 sessions of whole brain radiation. you have it every day except holidays and on the weekends. She and the fellow also determined I needded a steroid to help with the swelling in the brain from the mets. Now this is really fun. It's called Decadron. It raises your blood sugar A LOT, and it works like SPEED! So if you can imagine me as hyper as you have ever seen me and multiply that by 10, this gives you an idea of how I am right now. Probably not a good thing, but I did cook up a roast, homemade gravy and mashed potatoes Sunday night. I'm also talking a million miles a minute and have gotten a lot of work done around the house! I have to find out tomorrow if I'm still allowed to drive. I'm not sure if the mets prevents that or not. I noticed I still had some vision issues this evening so I'm not sure.
Whole Brain Radiation. The New playground I referenced in the subject. What a grand time that is. First they take you into the room where you get your treatments (looks like a CT scan room which is basically what they use.) you lay down on the CT table and they take this mesh material and wet it and put it on your face. they stretch it tight (it is mesh, so you can breathe) and cool it down so it hardens and makes a mask you have to wear for each of your treatments so they hit the right areas and you dont move your head. You then have this PLASTIC PILLOW thing under your head and it's like laying on a rock! (Gonna have to seriously speak to someone about that! Surely there is something better!! Maybe I'll invent one!) On the plus side (YES Virginia, there is a plus side!) They let you listen to whatever kind of music you want to calm you down and give you something to concentrate on! I asked for classic Rock and listened to The Hollies doing Long Cool Woman (a personal favorite), Tom Pettty doing Freefalling (probably not a great one for a table with no arms on it!) and Lynrd Skynrd doing Simple Man ( one of their best I think). As you can see, I got lucky and it didn't take as long as I thought it would . 3 songs worth. It's a bit creepy to lay there with something holding your face down, but with the music and the little ring they give you to hold on to, then it flies by pretty fast. The wierdest part of the whole thing is that when they did the radiation, I saw light "behind" fmy eyes. (my friend Dan says it's because nothing is in there and it was just bouncing around an empty space, LOL). I asked the Nurse, and she says that some docs think its the radiation hitting an optic nerve, but others think people just might be seeing it behind the eyes. I would of course be different, wouldn't I?
I had a bit of pressure in my head off and on today, but no other massive side effects so I'm guessing it's a good sign. I'm hoping it will go quickly and we find it works and then we can concentrate on the other tumors again. I refuse to give up! It's just a minor setback, that's all! I could of course sit around and cry (OK, I did do that a little bit one day!) but it's the way it is so one must make the best of it. I'm trying to just enjoy each day as it comes and hope I can keep it going. I read somewhere that if I can make it 5 years with the triple negative breast cancer, then I can probably make it 20! That's my goal!!
Hope you are all doing well. I will try to make it back here a bit more often and get up to date with everyone! Huge hugs to all and if I misspelled or it doesn't make sense, then I will use the radiated brain excuse!!