February 2011 chemo pals
Comments
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Well, since we're on the topic of hair, my hair looks ridiculous. I don't know how long it is, but decidedly not long enough. I've tried brushing it straight up in the air, upwards on all sides, looks crazy. Then when I brush it into some sort of order, I look like my mother. Plus I THINK I have a bald spot on the top towards the front, so I have to do the comb-over effect. The best look is when I put on my lavender night cap, and pull out strands arounds the edges. Gives me a more feminine look. Fortunately it's the same colors as before, silver, blonde, and light brown, a blend. But I think it's rather curly somehow, and pretty thick, too, kind of a clown look. I'm just used to my long, wavy hair, with every hair in place, not this explosion on top of my head. SIGH.
As for trimming it and dyeing it, no way, not even a curler shall touch my scalp. I'm gonna let it grow and grow forever. Becuz just as soon as I trim it up "to look good," I'll cry becuz it'll look short again if the ends are evened up. When you think about it, the top of the head part will take another six months to get down to the bottom of my ears, so I'm leaving it be. But for all of us longhairs, I can tell you a nurse at my cancer center, her hair fell out when she had cancer, and now it's as long as mine was, all the way to her waist, and hangs fairly straight, so if HERS can grow out, so can mine. But I didn't dare ask her how long ago it was, might get me discouraged. Oh, I don't think mine will EVER get that long again in my lifetime, so I suppose when the shortest part is below my shoulders, MAYBE I'll get it trimmed. BYE BYE CHEMO SISTERS FOR NOW!!! GG
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GG - You are 100% correct ... DO NOT GET A HAIRCUT until it's nice and full and at a length that you like...my VERY FIRST haircut (all geeked up, so excited that they might be able to make me look decent ... ) she "texturized" the top of my head ... after it was done, all I saw was scalp...again...and I was so sad. So, here's my list of haricut advice, repeat after me:
1. My hairdresser will never again use texturizing (or, THINNING SHEARS) on me - EVER.
2. My hairdresser will not cut anything without expressed approval from me.
3. My hairdresser will be given details on how important my hair is, how pissed I will be if she screws up, and how much therapy I will need if I see the top of my head.
4. I am in control of my haircut destiny.
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dogeyed and fuzzylemon Good points-I've been over on the Hair, Hair , Hair forum trying to explain this weird post-chemo hair. It's nothing like the texture of my old hair. It has no shine and acts like a brillo pad. It grows three times faster in the back and very little in the front. I've tried taming it with paste, gel, wax, mousse, but it refuses to cooperate and just goes where it wants to so I just let it:) When I wake up in the morning it's sticking out everywhere and I pretty much look like Don King! Fuzzy, I got mine trimmed a while ago to shape it and they took way too much off to suit me and they styled it into a big round helmet-yep, that's just the look I was going for, NOT! I won't get it cut again any time soon.
I'm so glad our Feb group is still going strong!
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Yes, SpecialK, that's me as of this week. The old one of the bald me was ready to be updated:) It's VERY curly and my husband is calling me Marge Simpson since it's growing upwards, defying gravity.
Fuzzy- Sounds like you have a mohawk going there. I hope you post a photo for us!
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One year ago today I had my first chemo treatment... My last chemo was in April right before I endd up in the hospital... Not sure when my hair started growing back because while in hospital and rehab I never took off my wig!!!! I am now 10 months past chemo and have a headful of hair. I have not had a professional haircut yet. Had my daughter trim the back awhile ago.. I am so glad this last year is over with. Hoping and praying we all have a better 2012....
Cindy -
Hi everybody!! So nice to catch up on the posts from all my old friends! I guess I am doing ok here. My scans showed cancer in the bones, which I know does not sound so great, but really was expected. I had a couple crying days, then bounced back to normalish. The good news is it's not in any organs. There is some silver lining to my cloud...I do not have to go back to work as my social security kicked in and I took an "early retirement". I am enjoying my days cuddling with my dog, scrapbooking, and baking interesting flavors of cupcakes (have really gotten into cupcake wars on t.v. with the new couch time!)
I am doing what I can to live my life to the fullest and work on some bucket list things (which mostly involve travel
So in April we are going on a carribean cruise, I am very excited! I am hoping to swim with the dolphins, my only problem is I still have this darn hole in my stomach from the hysterectomy. Part of me is thinking, in the scheme of things does it really matter if the stupid thing gets wet or even infected? Looking into some waterproof bandages and stuff. I am bound and determined to figure something out!Some friends from my work had a spagetti dinner for me and it was incredible and overwhelming how many people came. They lost count of the total, at one point people were lined up outside. I can't even believe I know that many people! It was very weird and awkward at first, but I was very touched!
So I am doing the arimidex, no real SE problems there. Started Xgeva shot, which I guess helps protect the bones. That is it for now. I do have a lot of pain, particularly in my arms and shoulders, especially when I lay down at night. It is very difficult to sleep in other beds, luckily mine is very soft. Am going to take a trip to Pittsburgh next week to see if there are any other options they can think of. I agree with my doctor that I don't want to spend what time I have miserable with more chemo or whatever, but if I can add even two years on to my life it is worth it.
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Jenn, so great to hear from you. You are amazing and an inspiration.
your outlook is inspiring. I'm sure you can find done sort of device so you can swim with the dolphins. that's sounds amazing!
Big hugs xx -
Jenn - YOU SWIM WITH THOSE DOLPHINS!!!! Wrap yourself in Saran Wrap and in you go! I am always so happy to hear from you ... and, I just friended ya
!I promise to post a pic asap ... I got nice compliments today (naturally I wasn't in my home town...everyone here thinks I'm an aggressive angry lesbian) ... so I will try to get something up soon ... yup, it's a mohawk!!! For real! LOL
I love my Chemo Family ... you are all so special to me. You have been there for me in the best and the worst of it all ... and still stay with me through my - oh...disposition? LOL You are such a special group and there is no way fo me to explain what you mean to me ...
XOXOXOXOXOXOX
Michelle...I MISSED YOUR CALL??????? Crapity crap crap crap!!!
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Ok...it's a little big - sorry about that!!
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I got a haircut today and more highlights - I think it looks kind of cute! Or maybe I am just kidding myself...
Jenn - good to hear from you! Sorry about the bones! I am supposed to get an Xgeva injection on the 17th to try to prevent worsening of my bones (I am osteopenic) on Femara. My onc likes it because it is preventive and treating simultaneously. I just had a bone density last week but don't have the results yet to know whether or not they have worsened. I say if you can't get in the water with the dolphins they should get out and come sit with you! Only seems fair! Glad you did the SSDI and took an early retirement, and keep on planning fun stuff! Tell us about the cupcakes too! I love to bake! So nice about the spaghetti dinner, what great support and an outpouring of love for you. Are you going to Pitt for your appt? My FIL went to med school there - it is a great place for cutting edge therapies. My BIL had brain surgery there in the late 70's for a previously untreatable condition. Hope it goes well.
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Fuzzy, your hair is awesome! Youre beautiful! And special k, I'm certain you're not kidding yourself, I bet it looks awesome too!
I'm struggling with a bit of a panic attack as I have to go for an ultrasound tmrw morning and it's bringing back all sorts of scary feelings
On Monday sometime during the night my right breast where I had my diagnosis a year ago exactly, got really hot, red, and swollen. I had a bout of throwing up, chills, and general disorientation. I went to my bs yesterday and she thinks it's an infection and has put me on two types of antibiotics. She also booked me an urgent ultrasound which is tomorrow. Whenever I see urgent, I panic and just the thought of a reaccurance sends me into a tailspin of tears that my Ativan can't even touch I did suffer cellulitis after my radiation treatments and I also do know that I won't get definate answers until I go through the proper tests, I guess I just needed to vent to those that "get it". I had a fever tonight, so I'm hoping that's a good sign?
xo -
Fuzzy your hair looks great. SpeciaK I am sure your looks great too.... Ruffolo will be thinking of you tomorrow morning as you go for your ultrasound... Hoping it is ainfection and the antibiotics will do the trick...
Cindy -
ruffolo - bummer when a fever is a good sign, but I think it is! Sorry you are having anxious moments, but we all understand.
crog - how are you doing?
fuzzy - your hair looks fantastic! You have bangs!!
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Thanks for asking SpecialK.. One year ago today I had my first chemo treatment... I just had an aorta gram as the dr thought I might need stents put in. I have had pains in my legs again.. Found I don't need the stents but next Monday I am going in to have another ultrasound done. He is leading towards another leg bypass surgery. I am hoping if I have to have this done that it will get more blood to my foot so that I can get that foot working better... It is never ending!!!!! I am trying to get over a cold right now.... How are you doing SpecialK.?
Cindy -
crog - are you doing physical therapy to improve your mobility - do I remember that you were before? Good about the aorta-gram. I am hanging in - very achy, having trouble getting in and out of the car, and very stiff getting out of bed or standing after sitting for a prolonged period. Having difficulty sleeping because of it. My onc's P.A. seems to think about 5 weeks after last Herceptin in early Jan. I will be able to tell the source (Herceptin vs Femara, or both). I am having exchange surgery on Feb. 24th, so will be relieved to get rid of these crazy tissue expanders. Hoping that goes well, it will be surgery #7. I know you can relate - you have been through the ringer!
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Ruff...oh sweetie my heart goes to you. Please keep us updated ok? I have my scans on the 16th so can we hold each others hands and jump in together?
Special...BANGS!!!! Yeah, I was all geeked up about that!
Crog. ..whew...stints? Gosh I hope that works!! Best best best wishes!
Thanks everyone....you're very sweet. -
Hi, just read your post...just sayin....an oncotype of 16 would seem to indicate that your breast cancer will NOT respond to chemotherapy...please research the Taylor study ongoing that has been implemented because oncologists have found that the mid range group,anything over a 31 and under 52 will NOT BENEFIT from chemo but the results of that study are 5 to 10 years away. My oncotype was 23 and we sought a few different opinions and only opted for the chemo as insurance. If my number was anything below an 18 I would've opted not to do it. BUT THIS IS SIMPLY MY OPINION. please do your research. I was horrified when only offered TC by first oncologist (ironically this is a much more expensive chemo) and when I went to Sloan they offered me CMF which I think is considered the most mild. I accepted and have to tell you but for the two days prior which are riddled with anxiety and the few days after of fatigue and nausea, it's COMPELTELY DOABLE. Please make sure you ask about CMF....especially for an oncotype of 16.
prayers for you...
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oh my gosh, your posts are hysterical...thanks for keeping us laughing...desperately needed.
peace
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You're young and a fighter I can tell...you SWIM WITH THOSE DOLPHINS...good for the soul and therefore the body..don't forget we're more than our physical beings. I felt hopeless too but found research on cancer cures really helped me mentally and hopefully will physcially. research MODIFIED CITRUS PECTIN and DIM PLUS. The pectin is endorsed by the American Cancer Society. The DIM takes works by basically nullifying the estrogen receptors and I'M POSITIVE I'M NOT PHRASING THAT CORRECTLY. There are so many people LIVING with cancer and not dying. I will tell you that as a sugar A D D I C T, I have read that sugar feeds cancer and yet it is still the hardest thing to give up. PET scans light up because they inject sugar in to your body and any cancer present lights up in the sugar deposits..(AGAIN, PROBABLY NOT PHRASED MEDICALLY CORRECTLY BUT YOU GET THE POINT).
you are IN MY PRAYERS, MY FRIEND...KEEP READING, FIGHTING AND SEARCHING FOR ANSWERS...AND DON'T UNDERESTIMATE GOD...HE'S BIGGER THAN ALL OF US AND OUR CANCER...
peace out
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Jenn....meet me in the OMG...
You're going to post pics right? Whoooooo!!! That's super cool!! My bucket list is full of unmentionables right now...what do dolphins eat? LOL
Night night everyone....my sleeper is kickin' in! -
Oh Fuzzy, I love your pics! Beautiful!
Sara, so sorry for your stress, but really it does sound like an infection!! My prayers are with you, you are so special to me!!!
K, yes my appt is at Magee Women's Hospital of UPMC. It is about a 4 hour drive, but they have made big gains with a friend from my support group here who is in a similar boat as me. Worth the try! Oh and the cupcakes I have tried so far are chocolate chipotle, maple bacon (my fav!!), and triple salted caramel...If you want any recipes let me know!
Cindy, prayers go out to you too! Hope whatever you and your doc decide on does the trick!
and tohisglory, thanks, I will do some research on that stuff, but agree that sugar is a terrible thing to give up!! I'm a choco-food-oholic!!
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Oh and after all this hair talk, mine must grow pretty fast! It is getting there, but at such an awkward stage! and very curly/wavy! It was much easier when it was around fuzzy's length. I wanted to post a new pic but cant find one on the computer, I will have to have my DH work on that for me!
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jenn - glad it is Pitt - hoping they can help. Great to know that one of your support grop friends has had good results. Your cupcake recipes sound awesome! I might have to have the salted caramel one - DH is a fan of caramel. DD took a pic of me tonight - I am not too good at tech stuff so I will have her put it up after she does her homework!
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Jenn - SO good to hear from you! You sounds positive and the others are right, women LIVE with cancer. Which is exactly what you're doing. That trip sounds fabulous!
Fuzzy - Bangs! I'm so jealous! You look great!
SpecialK - good luck with your upcoming exchange. What a long road you've had to get to this point. It has to be smooth from here, right?
All - You guys are Facebooking? I wanna FB with you guys! I come here, but then I read scary things and stay away for a while... -
pejkug - dang, I hope so!
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JENN, oh they just keep on comin, don't they, with the great news. Ye gads, child, now you have what my brother's son had, it was in his thigh bone, he's a 10+ yr survivor. He was 17 at diagnosis. Jenn, I am so relieved you have walked away from stoooopid work and will be sailing around in the aquablue seas of the islands, you will thaw right out, hon.
FUZZ, your hair and YOU look as beautiful as ever! But I gots to tell you, youngin, if you weren't so well dressed, in that second pic, the way the angle is, I SWEAR you look like you're a transient riding in a train's empty boxcar!!! Smile. "I'm riding in the empty boxcar of life." Gotta be a joke in there somewhere, from kidder to kidder.
RUFFY, yes, temperature indicates one heckuva infection going on. Now, me, I stay in the house ALL THE TIME, but now I gots me some poison ivy on my hand, and the thing is driving me nuts. "Why I have poison ivy?" Of course, I DID go out in the yard in my pajamas with these long throw rugs to hose off, and drug them around in the yard, and then pulled the garden hose from under the bushes where the poison ivy lives, so, gee, can't IMAGINE why I got it on my hands now. GG
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GG - LOL!!! We have a piece of land with an old barn on it ... there is a door that's barely hanging on that someone spray painted "NO GIRLS" ... I just love that for some crazy reason!!! Yeah, that thing is a box car mess but it's one of my escapes ... I listen to the wind running through, the light that comes in from the clouded and up kept windows ... I look for traces of life from the night visitors ... weird, I know ...
PJKUG - I'll pm you with how to find me!! I love the FB ... it's so easy to read and catch up and works well on my phone!!
I can't wait to see everyone's pictures!!! I had a little tiny bit of wavy but not much ... but then again, I really haven't let it get too long .. LOL
Ok...time to be productive....blech.
Love to you all!
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hi my favorite february ladies.
first let me thank you all for your kind encouraging words, we really are like a sisterhood and it means the world to me. my husband and mom and friends are great to listen and encourage but honestly, you guys take the cake! so thank you, thank you, thank you
i had my u/s this morning, the radiologist came in after and said it looks like a big absess most likely from my lumpectomy/radiation. a delayed reaction i guess. he drained some of it to be sampled and he also took 3 biopsy samples of the tissue surrounding it to send to the pathologist to r/o any cancer cells. just to be sure he said, but he said it didnt look cancerous to him. so im gonn go with that until i hear otherwise. i spent enough hours fretting already.
im feeling better, although the freezing has worn off and yeoooch!! but i will take some tylenol and hit the hay soon.
jen, maple bacon cupcakes!! ive heard those are the yummiest!!!
im looking forward to seeing everyones updated pictures.
and again, thanks ladies, from the bottom of my heart xoxox
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ruffolo - I posted on your other thread - put some ice on too!
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Thanks special k, I forgot about the ice
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