Outrider1 Posted August 8, 2009 Share Posted August 8, 2009 Sorry it has taken me so long to update and that I can't remember if I told you all about the "is it MS or is it Cancer" controversy. I do know that I I came on in June sometime after I got out of the hospital and you were all wonderfully supportive and it helped alot. Anyway. I saw the Neuro Doc and they ruled out ms because of age and my history of cancer. Said most major symptom attacks with MS occur between 20-30 so I was "tooo old". My research says 20-50 and it is not uncommon to have one even later. Then he could not shoe the area on the MRI so I could look at it again (have seen the correct MRI and was wanting to see it again) He kept trying to show me a different spot and couldn't find that one either. He was reading from my chart and would stop in mid sentence like what he was reading did not jibe with what he had read earlier, like it was some one elses chart. Needless to say all the did was re affirm to me that neuro had no clue what was going on and was just throwing out what was easiest. I went back to the RadOnc. and he emphatically stated , "I see nothing here that indicates mets (new or old) to the brain as does the radiologist" Since I had cut my first PCI short, we decide to err on the side of caution and do a little more just in case. Since my hair had starting coming back in and I knew it was fixing to be going back out, I had my daughter just shave it all off. We did 8 days which I finished last week. Am starting the step down for the steroids but they seem to help with the dizziness and balance both of which are better, but still there. Had PET scan yesterday Dr. Appointment the 13th. Fingers crossed for little to no change since last scan, which with SCLC EXT is as close to NED as you can get. That and the fact that so far I am 9 months out from chemo, which is good. Stay tuned for the next installment. I will try not to have so long a break in the action. Dawn Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 8, 2009 Share Posted August 8, 2009 Hang in there Dawn !! Prayers and Hugs for YA !! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 9, 2009 Share Posted August 9, 2009 Dawn, just know I am definitely out here waiting with you. How frustrating is a visit with a specialist that appears to not know what he's talking about. When I was first dx'd and schedule for "hair-loss chemo," I had my husband shave it all off in one shot once is starting coming out in the sink and shower. Think it upset him more than me. Not that I enjoyed being bald. I think if I have to do it again, though, I'll try to do make-up and go natural more often. The wig made my head hurt and the scarves kept sliding off. If you have that problem though, I think since then I saw something you wear that help anchor the scarves on. I'm feeling for you girl. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted August 9, 2009 Author Share Posted August 9, 2009 Randy and Judy, Thank you. Randy, I'm hanging in there, some days by the skin of my teeth, but still hanging. Judy, I wear bandanas when out just so other people don't treat me like I am "catching". It just amazes me how people react to a bald headed 50 year old woman. Sometimes it makes me laugh. But I wear it to sooth other people's angst and beacuse I don't want sunburn. AT home I go "la naturale". A simple joy that I have found, I have some scented body sprays, and when it gets too hot (keep inside air at 80-82 as Tx electric bills are worse than the heat) I just spritz my head. It's glorious! And I smell good too. Win-win as far as I am concerned. So it is not all so bad. Dawn Quote Link to comment Share on other sites More sharing options...
carolhg Posted August 9, 2009 Share Posted August 9, 2009 I love, love, love your positive attitude Dawn. I remember when I was bald, I did the same thing. One thing I found was that my head would get cold at night when I went to bed, so I started to wear a nice soft cotton sleeping cap. It became a habit, now that my hair has grown back I still wear it at night and love it. Carol Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 9, 2009 Share Posted August 9, 2009 Hey Dawn- Glad to hear from you!!! Sounds like things are going fairly well for you. I just finished 15 treatments of WBR and they wouldn't let me cut off my hair until it was over because of the mask. So I finished Friday and went home and got rid of it all!!! It had been disgusting it falling out all over the place!!! I can't wear a wig - they scratch too much so I wear scarves. I wore them the first time around and had no problem with them. I too wear a sleep cap!! We can be the BALD AND BEAUTIFUL SISTERS!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted August 10, 2009 Author Share Posted August 10, 2009 Patti, I have a wig, but when it came in the color was a little more orangey than the sample and it was not cut right and the person trimming it just could not get it right, so I had her leave it a so I could do it myself. I think I wore it once, it was so hot and scratchy! Since my hair had just started to come back in. the mask was not a problem, except I had lost weight, so I had to make a new one anyway (I still had the one from the first time). Now I just have to get the little bit of hair growth that started after I shaved it all off, off my head then I will be trully bald again. Since my daughter shaved it with clippers the first time, will probably have to take a safety razor to it. Yep, we can be bald and beautiful together. Dawn Quote Link to comment Share on other sites More sharing options...
ts Posted August 10, 2009 Share Posted August 10, 2009 Dawn, Funny about the "catch it" idea. I was walking to the car with someone who asked me for a ride to the light rail station - about 1/4 mile, very hot day. Last I had seen him was just before my dx. I gave him a very abbreviated version of the year...he didn't say much, but when we got to the corner, he said "maybe I'll walk." I wanted to say "you can't catch it!" But just pointed to where my car was and said, it was no trouble. I don't think he could get out of the car quickly enough. Toes crossed for the report. Be well. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 10, 2009 Share Posted August 10, 2009 Guys, I really hate those "catch it" stories. If it happend to me, I think I would LOSE IT! Judy in Key West Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted August 10, 2009 Author Share Posted August 10, 2009 Judy, If I get that reaction, I usually have something very "snarky" (which means sarcastic and just this side of mean and nasty sometimes) to say very loudly just to embarrass the offender, unless the offender is a child. Just smile at the kiddos and move on, but adults and teens should know better. But I usually don't let it ruin my day. I refuse the give other people my power. Meaning to give them the power to make how I feel about the day and myself change to something negative. Dawn Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 10, 2009 Share Posted August 10, 2009 Dawn, You have such a great attitude. I have no patients with idiot doctors anymore! Besides people thinking they can catch my cancer, I think what bugs me worse is when they look sooooo sad, like I'm already laid out for my funeral! Thanks for the update! Dana Quote Link to comment Share on other sites More sharing options...
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