Outrider1 Posted March 29, 2009 Share Posted March 29, 2009 I stopped my PCI on Monday last, as I felt we had done enough to be effect and at that point I was having minimal side effects(aside from the side effects of the steroids. I stopped them mainly because I have an aversion to messing with my brain, since I only have one, and Brain transplant techniques have not been perfected yet. Anyway, on Thursday last I started to experience the start of the shedding. Just a few hairs more that normal, so I thought okay, maybe this will be all. Friday, a few more than Thursday, so I was still not really concerned. Saturday, the day of the Great Achievements BBQ (to celebrate all of my milestones like my birthday, totally clean scans of Mar 8, 09, getting my smoking down to 1 1/2 ppd from 3 1/2 -4 ppd, etc) it started coming out in clumps. Now, I was well aware of the fact that the PCI could cause me to lose all the new growth (about 2 inches all over), even told the Rad. Onc. I was not worried, as I have a wig if I needed it and some great bandannas. I was not prepared for how I felt this morning. I got so ANGRY(which made me miss my target of 2 less cigarettes today, than yesterday, as when I get angry enough to cry, I tend to smoke more, which made me angrier). I got so mad that I cried, which is something that I have not done during all of the last year dealing with this. I have never asked "why me" (I always felt, why not me? I am no more special than the next person), have tried not to let my Dx. run my life, (you know, kinda like, I have cancer, but cancer doesn't have me). I was sooo mad, I just started pulling it all off ( at this point it was not attached to the hair follicle and was making my scalp hurt) and crying(I'm just glad I was home by myself and that the kids had gone out for a short while). I was hoping, by the time, it was over, I would feel better. But nope, I am still pissed off. When my oldest daughter got home, I asked her if she would take care of any of the strands that I missed, and she said she would (although the thing that has bothered her the most has been the loss of my hair,(she says she just does not like seeing her mother bald, bless her heart!)). So, although I don't want to bring anyone down, I thought that if I shared this with others who have been down this particular path, that maybe I wouldn't be so angry. As I typed it out my anger seems to have started to lessen, and although still teary about it, at least I am not so angry. That in itself is a blessing. Dawn Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 30, 2009 Share Posted March 30, 2009 (((((Dawn)))) Been there, done that. After my first chemo, I knew I would lose my hair so my girlfriends all came over and we had a hair cutting party - kinda like that was the ONLY thing I felt I could control in my life - what day I lost my hair. We left about an inch and the day it came out I was standing in the shower screaming!!!! People say "its only hair" but its not - its a woman's crowning glory!!! So I know exactly how you feel and how mad it made you. I do have to say, though, I never knew that I had a perfectly uniform head - no bumps, no ruts, just pefect!!! So don't get mad at yourself for having an extra smoke or two - it was a bad day!!! I hope you can pull out some pretty scarves and remember to celebrate all the GOOD things that have just recently happened to you!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted March 30, 2009 Author Share Posted March 30, 2009 I have done just that. My daughter took the clippers to all the rest of the strands left. I gave my scalp a warm soothing soak and then she rubbed body butter into my scalp for me. My sister has sent me some bandanas for my birthday, but I need to wash those first, but I got my favorite (which she also sent me the first time) and put it on. A little spa treatment and pampering, and I am feeling a little better. I'll worry about the smoking tomorrow. Dawn Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 30, 2009 Share Posted March 30, 2009 Hi Dawn. I can definitely empathize with you. I was totally prepared to go bald with my first line treatment. I figured it was just part of fighting this thing. And I dealt with being bald once. I never really wore the expensive wig I bought and even went back to work bald and just wore caps. My hair started to grow back in and was nice and short and even curly. At some point I went on Gemzar and the thought of losing my hair again never even occurred to me....until it started falling out again. I was so upset and I just couldn't understand why. It was because of course we all just want to feel normal. I was going on vacation and to see friends I hadn't seen in a long time...and I just couldn't stand the thought of having to go through the baldness again. Thankfully for me I went off the drug and the trend reversed although it took some time. So, I totally get how angry you are having to go through the baldness again. Many things about this darn disease just aren't fair. But hang in there, it will start to grow back again, and this too shall pass. Take care Sandra Quote Link to comment Share on other sites More sharing options...
ts Posted March 30, 2009 Share Posted March 30, 2009 Hi Dawn, This is what it took for you to cry? I've cried me a river already and it's only been 7 months since first hint. I got thru chemo without hair loss (on my head) but it has been thinning ever since. I don't know if it will stop before anyone else notices - it's been a month already and it seems worse every day. I started with a lot, so who knows. Forgive my ignorance - what is PCI? I hope you had a good cry, a good "spa" and a good sleep. May tomorrow bring you some new happiness. Stephanie Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted April 1, 2009 Author Share Posted April 1, 2009 PCI- preventative cranial irradiation. I call it "frying my brain" or "the microwave treatment" but it is used as a preventative especially with those of us who have SCLC. I did not have any mets to the brain, which was fortunate as I had them just about every where else. Dawn Quote Link to comment Share on other sites More sharing options...
ztweb Posted April 9, 2009 Share Posted April 9, 2009 Dawn, Bless your heart! I am so sorry...My dad had the PCI and for the longest time he kept the face mask in the bedroom as a reminder...not sure why...I guess he was just proud of finishing. You know what I think...why you? Sure, why not you, but seriously, why you? Cancer sucks...there is no way around it. On a good note, when Dad lost all the new growth with the PCI, we were all marveling at how the PCI made his head tan...so atleast it isn't the white look!! (silver lining???) Blessings to you Dawn...you have been through alot. Jen Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 9, 2009 Share Posted April 9, 2009 Dawn, On the plus side, you're not sporting a comb-over. I'm betting you have a beautiful head, nice shape, cute ears - far better than a mess of long stragglers that you're gelling to your scalp to appear to have more hair. I lost about 70% of my hair in the "male-pattern balding" area, kept the rest. Looked like an old hippie that hadn't made peace with the fact that mullets and baldness don't mix.... Wonderful thing is, I never let anyone take any pictures, so I can't show you the goofiness it was! Hang in there, when you're finished sticking your head in the toaster, it will start to come back and you'll be ever so thankful for what would have brought you to tears in your teenage years. Hugs to you, I cry when I'm really pissed, too. If I remember right, the first time I cried over my whole ordeal was when I had to miss my son's DARE graduation because I had to avoid crowds. I've NEVER missed any milestones in his life, and it hit me hard. I was pissed off and I was sad and I can't get it back - but I did make it to his milestone of driving, and every basketball game he ever played! When you reach the end of your rope, tie a knot and hang on! (and if you're feeling especially mischievous when you start feeling better, get that thing swinging and let out one of those Tarzan yells and swing up to your next battle). Take care, Becky Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 9, 2009 Share Posted April 9, 2009 Dawn, all of us who have done the bald thing "get it." I try not to think about the possibility of having to do it again. I tell myself if I do have to, maybe it will come back in nice and thick like it was before. If you had to lose your hair again to release those pent up tears, so be it. I believe you'll be the better for the release. Keep venting girl. That's what we are all here for. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted April 10, 2009 Author Share Posted April 10, 2009 Thank you all for the words of encouragement. I have broken out my pretty orange Barbie hair (wig) and am going to have my daughter help me trim more to my style. If I can figure out how to stiffen felt, I am going to stiffen the brim of one of my hats to wear. I have decided (after someone pointed out the other day I was having a pity party (not unkindly, mind you)) that I was going to get back on track and not let a little loss of hair derail me getting my life back as close to normal as I could get it. Thank you all so much. Dawn Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted April 10, 2009 Author Share Posted April 10, 2009 Oh! and I am going to mosaic my mask and then put feathers all around the outside edges to look like one of those Vegas show girl headdresses. I plan on starting that sometime this week end. Dawn Quote Link to comment Share on other sites More sharing options...
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