Leslie221 Posted December 10, 2005 Share Posted December 10, 2005 Hi all! I've answered lots of PM's in detail and just ran out of steam to post a decent update for everyone. Let me preface this by saying the Decadron got rid of all my nasty little physical symptoms by the next morning, so I have been able to feel like my good old self very quickly! Next, the Decadron puts me in a mildly euphoric mood and gives me ENERGY so I actually feel good! No sadness, very little fear and have determined to fight and hope as before. This is just a roadblock that can be overcome. Can't do stereotactic surgey - they don't think it helps if you have more than 3 mets. (I heard this from three physicians including one who performs it.) So, went to the Radiation clinic Thursday. I really liked and trusted everyone I met. The clinic is very modern (4 years old), all the latest and greatest technology, very informed and very likeable people! Phew! I had to get fitted for a weird plastic-like open mesh face mask - hot pink! - that molds completely to your face and head. Then they do an MRI with it on and mark the mask instead of your skin with points for precise radiation later. Every time you have the radiation you wear the mask and it holds your head still and in the exact position every time. It felt like having a facial - wasn't creepy at all and you breath like normal. I start Tuesday afternoon. They'll radiate the entire brain with very low doses for the first 10-15 treatments. Then the last 8-10 visits, they zap the actual 8 mets with higher doses. Each visit, from walk-in to exit, only takes about 1/2 hour! So, we're not talking hours in radiation, thank God. But I do have to go Mon-Fri for almost 5 weeks! I get the day after Christmas and New Year's Day off! WOOOHOOO! Friends are all lined up to take driving duty 'cause it's 40 minutes away and Mark can't come back and forth from work all day and I can't drive (while treatment is happening.) Both my part-time jobs have worked out replacements through February if I want and no pressure. Small businesses and all like family, so I don't have anything but support from them. Am I blessed, or what? If and when a met grows again, I can have the Cyber Knife surgery then - as long as there are 3 or fewer. I'll have routine MRI's from now on, so no chance of getting caught off guard like this again. Onc hasme taking my Tarceva 2 pills every other day now. We'll see what happens. He may want me to switch to Carbo/gemzar with new stuff he's researching. Lots of options obviously, so I have gotten past the initial dread of feeling "doomed" again! I will lose my hair from the radiation, though! About the 10th treatment, they think. So I'm picking out a wig or two (the insurance will reimburse) and planning to look even better than with my own thin, fine hair. Gonna stay with something short and easy and avoid the temptation to go the Cher or Farrah route! Will post picture around Christmas or New Years! BTW - those of you who've been bald from chemo or radiation, would love to hear tips, tricks, heads up. I'm getting some Rx for an aloe vera lotion to apply to my scalp, face and neck 'cause there will be drying and irritation maybe. Anyone have those experiences with radiation? Also, sore throat after 10 days is supposedly a common side effect. Yes? Gee, if I'd had this Decadron when I was going through Finals in college, it would have been a breeze! Love to you all; no matter how many words I have right now, I can't find ones that really express how IMPORTANT and COMFORTING your friendship, support, and information has been. It is really the best medicine for all that ails me. So, I'll just say "Thank you" and hope you understand. Leslie Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 10, 2005 Share Posted December 10, 2005 Leslie, There's no doubt in my mind, but that you will be just fine. I've never read a more positive post. Sending you love and prayers to help you along through all the days ahead. Keep us updated, we love you. Love, Sue Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 10, 2005 Share Posted December 10, 2005 Leslie, Research well done, treatments all explained, already masked, Now for the treatments. Wishing you the best, just watch for some tiredness after a few treatments. Go! Leslie, Jackie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 10, 2005 Share Posted December 10, 2005 Leslie, thanks for the update. Sounds like a plan. Lucie had the mask when her skull was radiated. She has not had more than 15 at a time, but I had radiation for prostate that was 7 1/2 weeks, so I know what that is like. Lucie's hair did thin out where she was radiated on the skull, and, because of the angle of the beam, she lost some small hearing in her ear on that side. Best to you. Don Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 10, 2005 Share Posted December 10, 2005 I am so glad to hear that you have gotten passed that "doomed" feeling.I think we have all been there at one time. Once you get past that sucker you can fight the fight. You just keep on keeping on! Prayers! Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 10, 2005 Share Posted December 10, 2005 Leslie, First I am so glad the old upbeat you is back. And boy, I love your drs. So many options still available. Get the triple S wig, short, sassy and sexy. Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 10, 2005 Share Posted December 10, 2005 Leslie, You have such and upbeat and positive tude. You are going to be fine and your doctor's sound like they know what they are doing. Your post has a happy and relieved piece of mind feeling. Just remember, we are here for you. I will be in touch next week... Thinking of you and lot's of prayers. Hugs for you and the little furry critters, Karen Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 10, 2005 Share Posted December 10, 2005 Leslie, sounds like you have a great plan in place. We used aloe vera on Alan's scalp that worked best. he did loose all his hair, but finally coming back in. (he says its because I rub my magic hands on his head) Alan did have some hearing issues and the DR. gave us steriod drops for that, seem to help. Just wanted to mention that. Please keep us posted and happy to here you loving husband is home with you. Quote Link to comment Share on other sites More sharing options...
LynneH Posted December 10, 2005 Share Posted December 10, 2005 Leslie! I'm relieved to hear that fighting and positive spirit is back! Hot pink mask? Wow! Jim never mentioned his mask being hot pink but he was a man of the new millenium and probably thought nothing of it...... Love to hear about your great driving friends, great employers, great doctors, and great Mark. What else is there that really counts? I talked to my dogs this morning about "Leslie" and how the doctors were going to make her well again. They send their biggest cyber dog bone to you, and they aren't known for their sharing ways so you must be mighty special. Will be thinking of you on Tuesday. Love, Lynne Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 10, 2005 Share Posted December 10, 2005 ((((Leslie))))) Ready to fight with you! Those little buggers don't stand a chance! Quote Link to comment Share on other sites More sharing options...
gail Posted December 10, 2005 Share Posted December 10, 2005 Glad you are feeling better I had breast radiation with the first cancer--it gets to be so routine you don't even think about it. Look at the light as a healing light. Had chemo with the second, and yes, was bald. No matter how much I told myself I was prepared, that day was bad. ATIVAN was my friend that day. I have a VERY large head honestly. I had a choice of maybe 3 wigs. (It's really big ) My wig and I did not bond. At all. I developed a fetish for hats of all colors. Loved them. And spent $$ on earrings. And this is no lie--I was outside at my son's hockey game (winter) with my hat on, and someone came up and asked if I had hairspray!!! I burst out laughing. And told her. I really recommend going going head naked at least around the house. How many men shave their heads routinely??? Who said women have to hide? gail Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted December 10, 2005 Share Posted December 10, 2005 You sound great and it seems like everything is moving in the right direction. Your onc sounds great and seems to be right on top of things! Keep up the good work, Leslie! We all have faith that you will get through this bump in the road! Cathy Quote Link to comment Share on other sites More sharing options...
z Posted December 10, 2005 Share Posted December 10, 2005 My thoughts are with you Leslie. Z Quote Link to comment Share on other sites More sharing options...
z Posted December 10, 2005 Share Posted December 10, 2005 My thoughts are with you Leslie. Z Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 10, 2005 Share Posted December 10, 2005 We feel honored to be holding your hand through all of this. I am sure that is how all of your co-workers, neighbors, friends and Mark feel too. love, Cindi Quote Link to comment Share on other sites More sharing options...
Ry Posted December 10, 2005 Share Posted December 10, 2005 Leslie~ I am so glad that you've got everything together and worked out. Now when you're done you can put the mask on the wall and have an art piece. Good luck to you..I just know its going to be fine. Rochelle Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted December 10, 2005 Share Posted December 10, 2005 My mom lost all her hair, but it grew back. She also had a bit of hearing loss in one ear, and what looked like a sunburn. All these issues cleared up pretty quickly. Mom was never crazy about her wigs, either. Scarves and bandanas worked better for her. Wigs can be scratchy for those without hair, and they are HOT. Try www.headcovers.com for some ideas on wigs and alternatives. Good Luck! Quote Link to comment Share on other sites More sharing options...
kamataca Posted December 11, 2005 Share Posted December 11, 2005 Leslie, Two words: platinum blonde! You are doing an amazing job of being bold in the face of all of this. My mom had one of those maskes for her skull radiation. To show you what sickos we are (or how we use our twisted sense of humor to get through a tough time), we used it as a Halloween decoration this year! Yep, drape a white sheet over it and it makes a heckuva ghost! I'll help you decorate yours next year. Take it easy and keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 11, 2005 Share Posted December 11, 2005 Sounds like a good game plan Leslie. Hang in there I know you can do it. Will keep you in my prayers. Rich-- Quote Link to comment Share on other sites More sharing options...
Geri Posted December 11, 2005 Share Posted December 11, 2005 Good luck, sounds like you've straightened out a few twists in your new road. Geri Quote Link to comment Share on other sites More sharing options...
midge Posted December 11, 2005 Share Posted December 11, 2005 Leslie, Count me in as one of your supporters. I think that you are going at this thing with the right approach and will beat its *ss. I think of you often and pray that you will come out on the other side a winner. Take care my friend! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 11, 2005 Share Posted December 11, 2005 ATTA GIRL !!!Now your talking.We are all 100% with you. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted December 11, 2005 Share Posted December 11, 2005 Leslie, I see you put on those boxing gloves, and you are ready for that knockout punch. You sound sooooo much better. Now I feel better. You are going to get though this detour fine. I can feel it. You are very lucky to have friends lined up to take you to your appointments. That just shows what I knew, that you are such a special soul. And to get you covered in both jobs, that must be a load off yours and Marks mind. Your docs seems like he has the right plan for you. Leslie, I really am so elated that you are doing so much better and your news is not doom and gloom. You kick a** girl. You are ready... You rule Leslie!! WHOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO!!!! Maryanne Quote Link to comment Share on other sites More sharing options...
bunny Posted December 11, 2005 Share Posted December 11, 2005 I am glad to hear you feeling positive about your plan. we're behind you all the way. xoxo bunny Quote Link to comment Share on other sites More sharing options...
nancy c Posted December 11, 2005 Share Posted December 11, 2005 You are a strong person. You can do this and will do it well. Hang in there and keep fighting. Best of luck to you. God bless, Nancy C Quote Link to comment Share on other sites More sharing options...
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