Starting Chemo in Nov. 2011...anyone else?
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Julie ~ I am glad to be a part of this safe place for all of us to say what we want, when we want, and know that our "sisters" understand our fear and frustrations. I belong to Kaiser whic is an HMO and the MO's there do not believe in scans as they say finding a recurrence early doesn't change the outcome. I am very frustrated by that and my hustand and I both don't see the logic in that opinion. They also don't typically believe in cancer screening with blood tests either. I went with a friend to a different (young woman) who is also a Kaiser MO and she told my friend if she insisted on having the tests, the MO would order. However, (and I was in the room with my friend per her request) the MO told her that the tests are not very reliable and asked my friend to promise she would not be upset at every little change that might show up. WTH? I am with GrandmaV...I keep praying for a cure and also a vaccine for others who are at risk...even if they don't know it! I, too, have no idea how you feel...and selfishly I am hoping I never do. That being said, I am praying that you will have amazingly successful treatment and that you will continue to laugh with your family and friends for many, many, many years! The attitude you show proves you are a winner and will be brave and successful.
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Bahamamom ~ My mother-in-law never knew I had BC. She passed away last November and the only thing she ever noticed was my new hairstyle (which, of course, was my wig). She told my best friend that she didn't like my hair the new way...little did she know...LOL! I work at a school as well (I am the office manager) and everyone did know because there really aren't too many secrets one can hide from my school family. They were amazingly supportive and generous. I certainly understand your choice not to share what was going on, but as you mentioned, they figured it out. I figured I might as well "come out" as they would be upset if they heard it through the grapevine! Like you I am trying to get back in to walking for exercise if this damned humid weather ever goes away. Here's hoping we can both get started soon! I also hope you feel validated with all that you have been through. This disease makes us brave and strong even when we wish we never hear of the two dreaded words...BC. We have all been through so much and as for me, I am hoping and praying the little white pill I take works!
GrandmaV ~ my little gray furry Gracie has been with me through my journey. We got her less than a month before I got my diagnosis. I feel like there was a higher power that made sure I had a chemosabe to count on for companionship during a year that was so lonely when my husband had to work. She somehow figured that I am better now so she pretty much runs the joint!
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Linda, yes, they do have a tendency to do that. I'm sure chocolate thinks he's got me trained. What kind of dog is Gracie?
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Hello ladies, guess what? My hair started falling out in chunks today. I had chemo last Thurs, 4 days ago. I'm amazed at how fast my hair started falling out! This is great news! No hair = chemo working! Yes!!!!!! My hair grew back after chemo, so no worries! I had my beautician (sister-in-law), cut and shave it all off.
The first time I had chemo, the onc recommended I shave it off, so I did and I'm glad he did cause would've been crying all the time if I saw my beautiful at the time very long hair fall out in chunks. Stubble loss doesn't bother me.
Right now I live in a region of CA called the valley where the tempts are a little, ok a lot warmer than LA area by at least 20 degrees. It's been in the 90s and 100s here, so not gonna miss my hair there too. I also have chemo induced menopause, yes it was confirmed with blood test of hormones by my onc, he said you are right smack in the middle of it, so not even beginning. I get hot flashes or maybe it's the tempts here, but anyways the AC better be on all night or I can't sleep. I am usually a person who is just hot in body tempt so add menopause, current weather tempts, u get the picture!
My friends and family complemented me on my baldness before cause I have a pretty nice shaped head, I can rock this style. I kind of want to walk around commando style and see how people react. I think I'm pretty sexy looking bald! That's my opinion, u gals can judge as soon as I figure out how to post new pics. For my parent's sake maybe i'll wear a hat in front of them. It's so hot out though! ugh! I hate summer chemo! I don't like wigs either, too hot and itchy!
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Grandma ~ Gracie (the brat) is supposedly a shitzu-terrier mix. The only part that isn't terrier is the tail that won't uncurl! Other than that, she is definitely a terrier and looks like Toto in the Wizard of Oz. She is very willful and loves getting her own way! If we don't pet her whenever she wants us to, she will use her paw to pull your arm over to pet her. She also LOVES watching TV and even knows the music of commercials with dogs in them. When she hears one she runs to the TV and wants to bark. We have found a word to stop that. It is "tube" because my husband made a really loud noise through a paper towel tube that scared the heck out of her. Now all we have to say is "tube, Gracie." It is the funniest thing ever. My friend watched her when we went on our Europe trip and when we got home she knew we weren't lying because she ran to the TV at her house, too. Gracie loves watching football (honest) and she actually sits and watches lots of other stuff, too. It's crazy and just makes us laugh now that we have gotten past the barking at the TV part. What kind of dog is Chocolate? Don't you just love dogs? I can't imagine not having one in my life.
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Julie ~ I live near San Diego (10 miles inland) and it is so hot here, too. I hate it because now that I am on anastrozole I seem to have even more reaction to the heat. My head sweats so much that my hair is dripping wet...yuck. I am glad you are rocking the bald look...I think once you have "been there, done that," it isn't quite as shocking as the first time. Not that anyone wants to have to go through chemo stuff again, but when you know it will help you fight the BIG C, it is just something you know you have to do. Actually, I found that the thoughts of losing my hair was harder than actually having my head shaved. Once it was done, it was done and I didn't dwell on it as much as I thought I would. I am glad you have a "nice shaped head." You rock that bald look, girl! I think you will be fine if you decide to go "topless." Keep us posted on what is happening with you. You know we are thinking positive thoughts for you every single day!
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Linda, yes, I do love dogs. But I have to say of all the dogs we have had, Chocolate and I have a closer bond. He is supposed to be a miniature long haired dachshund, but he's not very miniature. He was one among a litter my daughter's dog had. The daddy is much smaller than he is. I probably should have named him Stretch, because he just kept getting longer and longer. But he didn't look like a stretch when he was a puppy. I was there when he was born in 2009, but was determined not to take one of the puppies (I already had a dog who was about 13 years old and I knew he wouldn't like the puppy), then fell in love with him. He's a faithful companion. Gracie sounds adorable. What a little character.
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Hello ladies. Well, this week is my first week unemployed. My brain does not like that fact. My employer has terminated my position since I can't return to work right now.
On the other hand, got the news today that my labs are GOOD! Also no more Zelda!! Holy shit! I was so happy driving home from the hospital that I was blubbering like a baby. I think I can stand being unemployed as long as I'm not still doing that chemo. Can you see me taking a bow for finishing up? Hahahahah! Crying and bowing. I got it done, though!
I have 3 days absolutely full of scans and appointments at MDA in Houston starting on 9/23. after that, I will have the plan for rads. Please keep your fingers crossed for clean scans for me. I need all the help I can get.
Phyllis
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Phyllis ~ can you see me doing the happy dance for you? Well, I am! So wonderful to hear your good news. You can be sure I will be praying for clear scans. Keep us posted. I am sorry you can't work right now since your employer is a big poop, but since you don't have a choice use the time to rest, relax and have some "me" time!
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Hi All,
Julie - sounds like you had a great weekend and your daughters did as well. And bals is beautiful - wore a wig only 2 or 3 times during the first round of treatment. Hated wigs and I live in the northeast. Bald at home, baseball hats in public
Enjoyed my time on the Cape, weather was iffy but still had fun. With friends and many laughs. A friend of my daughters was down at her grandmothers so they were able to hang together. All was well. Home back at work
Phyllis - yes only clean scans.
About scans - my onc at Dana Farber is not a big believer - says scans beget scans beget scans. One little thing pops up and it sets off a chain reaction of doc appts, tests and more scans. So this looks like a pretty common train of thought. That being said I only had the one, at my first 3 month follow up at the end of treatment. That is how they caught the spread - onc tells me they may not have caught it for a few more years as I am symptom free. So hmm , not sure how I feel about the whole scan thing. On one hand glad to have caught it and be treating, but if we hadn't and I was symptom free - I would also be anxiety free. And given my current stress /anxiety level there s a very real attraction to not having known. Or at the very least, not having had my first scan until I was 6 months out, I would have spent the summer relatively stress free. It was soooo good to be done with treatment and clean, I thought. I know this sounds crazy - treating early has a better outcome hopefully - but I hate being stage 4 and having this hanging over my head every minute of every day. A few more days or months of " freedom" would have been wonderful.
Vent for the day
Be well
Nel
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Linda- your post to Julie was beautiful!
Phyllis-- I just pm'd you but you now have to visualize both Linda and I doing the happy dance!
Grandma V-- yes, dogs are amazing. I got a rescue almost a year ago-- cute little 25 pound whippet/catahoula. She is the MOST cuddly dog I have ever known. When I am worn out she just crawls up next to me, fitting into the tiniest of spaces on the sofa. I can't figure out how she can contort her body so! I took her to one of my last chemo treatments and while they said she wasn't allowed, they let her in and she crawled in the bed there and didn't make a single noise or move for hours!! The nurses all came in to see her and were astounded. Her name is Qouma which means "painted face"--which she has.
My cleanse took a turn just Sunday night--wow--intense. I am itching all over. While I have a few headaches they are now just temporary and don't last for days. Nice... But I have to say that the next time I get one of these ideas, I am going to think twice-- 30 days of this is ALOT!
Julie-- short hair is IN...especially for those of us living in 100 degree climates. I am keeping mine short-- the night sweats are so intense (I can handle the hot flashes), amybe made worse from the cleanse, I don't know but I am not even taking Tamoxifen!! So I can imagine how it must be for the rest of us!!
Q.
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Phillis, I'm with Linda and Quaatsi doing the happy dance. Congrats!
Nel, Glad your weekend was fun.
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I've been up at 1am feeling like I was starving to death, like I have a bottomless stomach. I finally figured out the problem, it was the steroids I've been taking. It makes me so hungry, I couldn't sleep. My radiation onc initially had me take 3/day, then 2/day, now he oked 1/day and by the weekend none. Can't wait. Hate getting swollen all over and always hungry! Had my 10th brain radiation today, finally at the halfway point. 10 more to go. Next chemo is this Thurs.
Tomorrow my 10yr old is getting braces put on, she's so nervous and asked me to stand next to her, I said I'll sit next to her and hold her hand. She's 5'5" tall and wears women's 10 and 1/2 wide shoes, but still a big kid.0 -
Julie - I really hate steroids. I know they have to use them, but I hate how they make you feel. I'm glad they're cutting back on them slowly. I'm so glad you're halfway done with brain radiation.
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GrandmaV, me too! Can't wait til I'm all done and all clear!
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Crying story, I lost it today, I too am human! I was so hungry and ended up eating lunch at 2pm. I went to my 11th radiation treatment today. My mom drove me, she insisted we get gas when we were late to begin with. We stopped for gas and got to my treatment late, so I got pushed back 2 people. Was starting to get hungry. Had to stop by 2 places to run errands. I asked her to stop and let's get a burger or something cause I was starving. She said, no cause it's bad for me! I was like, oh no what's gonna happen to me, I might get cancer, hello I already have it! So we drove all the way home and I was starving and mad! As soon as I got home, I ran to the kitchen and took out everything I could get my hands on.
I asked my mom to heat up some pork belly in the microwave and she said I'll heat it on the stove. ARE U KIDDING ME! I'm dying of hunger and you're worried about microwave safety! I just ate it cold! I started shoving my face with everything in sight.
My big bro came into the kitchen with my dad and asked y I didn't eat anything in LA after treatment. I just lost it! I started crying and chewing, and choking, and crying! I was so mad at my mom for not letting me have a damn burger! I was mad that she kept delaying me from eating! My brother was like how old are u, but he didn't understand what I endured all day, starting with delayed treatment, very late lunch. I was blowing my nose, crying, chewing, screaming, coming up for some air, then crying again, blowing my nose, then chewing, choking, swallowing, on and on and on. I finally finished eating and had to leave again to pick up my daughters at school since my oldest has a orthodontist appt. Almost didn't have time to eat at all. I held it together before leaving to get the kids, don't need them to stress watching their mom bawling cause she was hungry! What a day!0 -
Julie, This sounds like it may be a symptom of steroid psychosis (sometimes referred to as roid rage). That's why I said earlier, I was glad they were cutting your steroids slowly. Maybe its not slow enough. That's what happened to me. I cried and acted totally irrational for weeks. Plus, you're getting carboplatin, which crosses the blood brain barrier, which is great to fight the cancer, but it messes with some brain cells too. And you're getting brain radiation. A triple whamy. It is not your fault you reacted this way. It is medical induced and a side effect of your treatments. If you have this kind of side effect you can no more control it than you can nausea when it's a side effect. I'm sure once your family knows this, they'll be more understanding. And you'll feel better knowing this is not your fault and temporary. My doctor put me on amitriptyline, which according to the information I research is the wrong kind of antidepressant for this kind of reaction. Here's a link that explains it better: (paragraph 3 has some of the symptoms and a treatment that has helped others) Keep fighting those cancer cells. You're doing great.
http://www.drrichardhall.com/steroid.htm
Here's his NCBI abstract:
http://www.ncbi.nlm.nih.gov/pubmed/438794
It's old information but still applicable.
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If the links don't work you may have to cut and paste or type them in.
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Thanks GrandmaV. Feeling much better now, thanks all! Picked up my daughter from school with my dad this time, he's more rational and will let me eat a burger! We took Olivia, my 10 yr old to get her braces. I think my brother felt bad for me cause he called me and told me to have dinner in LA near the orthodontist, so my dad, daughter, and I went to out favorite Korean soup restaurant and I ate a bowl and a half of the yummiest tongue soup money could buy. For dessert, we got Mc D ice cream cones, so happy now!
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Feeling much better now, thanks all! Picked up my daughter from school with my dad this time, he's more rational and will let me eat a burger! We took Olivia, my 10 yr old to get her braces. I think my brother felt bad for me cause he called me and told me to have dinner in LA near the orthodontist, so my dad, daughter, and I went to out favorite Korean soup restaurant and I ate a bowl and a half of the yummiest tongue soup money could buy. For dessert, we got Mc D ice cream cones, so happy now!
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Today's declaration: I will enjoy my meals without any tears! I will have fun with my kids cause there's no school today, Jewish holiday, and we're not even Jewish, yes!
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GrandmaV, I was enlightened by the articles, thank u so much, I knew it wasn't me, it was the steroids!
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Julie,
Glad you are feeling better. These meds and the stress canmake us feel CRAZY.
Be well
Nel
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Thanks Nel!
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Julie ~ So happy to hear things have gotten better. I was lucky and didn't have a reaction to steroids (actually had been on them for a year and 1/2 for an immune disease) but just did not like the way they wired me up and made me want to eat all the time! I say if you want a damned burger, you should have it. There will be time to work on your food choices after you are though with all your treatments. Seriously, I believe the only people who truly understand what we are going through are other survivors. So glad you are able to keep getting your treatment. Still praying for you! Linda
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Julie, It's so awful to feel so out of control. But to know it's a side effect helps.
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Ok ladies, I have great news, getting my burger on tomorrow, finally my mom has caved in and realizes I need what I can get right now and I did apologize. I explained to both my parents that it was the steroids, not me acting crazy! Can't wait for my burger tomorrow, so excited!
Today was brain radiation #12 and Chemo #2, so far so good, no complaints, got the nausea under control, just have really heavy leg feeling, but otherwise ok. After getting home from another yummy lunch of Chiinese seafood noodle with nuked veges, and Mc D M & M Mcflurry, I was happy. I took a nice nap. Then I went fish shopping with my girls, it was fun. I want them to practice being responsible before we get them puppies when we get our own place after I get all better. I promised they could pick their own puppies and each can have one. They will have good practice with the fish. I picked out a few too, didn't name them yet, any suggestions? All in all a great day. Hope all of you had a great day too!
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Julie, It lifts my spirits when I hear about your good times. Makes me smile. I'm going to join you and eat a burger tomorrow in your honor.
edited to add: what about "burger" for one of the fish.
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Julie ~ how about "Noodle" for one of the fish? or maybe Big Mac? So glad you are feeling like you have gotten things straightened out with your family. Unless you are going/have gone through all this stuff, it's hard to relate.
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Linda, I like Big Mac. That's a cute fish name.
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