Has anyone started a Dec 2011 group?

naan1004

Great news! My tumors in my brain r all so small that 4wks of radiation will kill them all, so no need for more radiation according to my radiation oncologist!

Mardibra

Great news....zap those suckers!

naan1004

Thanks all!  Going in for my second radiation treatment and in high spirits cause it's going to kill all those suckers!

naan1004

Hello my sisters, wanted to update u on my progress.  Today is my 3rd brain radiation, still in high spirits, got some awesome news yesterday.  Onc and surgeon both feel i should start chemo ASAP since I have tumors in lungs, bones, appendix, just about everywhere. Decided to start next week, so wish me luck.  I will be having both at the same time, I'm sure I can handle it.  I did it once, shoot I could do it again.  As long as I can kill all those suckers and live a happy/healthy rest of life with my girls, family, I don't care how difficult this journey will be.  I'm all up for it.  I could still use words of encouragement, prayers, and your thoughts, so keep them coming!!

Mardibra

Praying for u Julie!

naan1004

Starting chemo with continued brain radiation next week Thursday. Onc wants to try abraxane and/or carbopratin once a week for 2months, if I can handle it, he wants to up the dose to once/3wks, this works well for mets and other organs where cancer has spread, but still waiting for better path report. They said I just have mets and can't find place of origin, keeps changing too much, so onc sent sample to another lab outside that can stein and hopefully find the true origin so he knows exact cocktail that will kill all those suckers. Can't wait til they're all gone forever and ever!

Today's radiation went well, but face was starting to swell to the point that my mask was getting too tight and uncomfortable, radiation onc said due to steroids, so he will most likely change it from 3x/day to 2x/day to prevent more swelling. Otherwise little to no SEs.

I had a yummy lunch after and green tea shaved ice was delish with my mom, oldest bro, and niece. Afterwards came home and am busy posting updates on FB and here.

I have such an awesome support group this time, since we moved into my parent's house. We have 11 people living under one roof, in a 5 bedroom house with 3 bathrooms. My parents, my oldest bro, his wife, his 4 grown kids, me, and my 3 kids. My oldest bro is 10 yrs older than me so his youngest son is a senior in high school, all grown up compared to my 10 and 7 yr old girls. My nephews and niece have taken on the role of surrogate mom and dad, since I am sick and my husband due to work being so far from here us temporarily living at my cousin's house 1-1&2hrs away. Tonight was Back to School night and my oldest nephew, 22 and my niece 21 took my girls there to meet the teachers and do parent stuff for me. So glad we r staying here and getting all this help. The older ones also drive so they help me with picking up the girls since I can't drive right now, I love my family! They're awesome!

Mardibra

Sounds like a great support group!  Good for you.  Help with the little ones will be necessary when you start chemo.  Im sure you remember the fatigue can be bad.

Thinking good thoughts for you and hoping that chemo kills all those crazy cancer cells.  Its time for them to go!

naan1004

Mardibra, yes am so ready to rid my body of every single cancer cell, this is getting too exhausting. I can do it with all of your support, so keep those encouraging words and prayers coming cause I pray for all of u too!

markat

Julie I just logged on for the first time in awhile. I'm praying for you. I'm glad you have that support system!

naan1004

Markat, thanks!

naan1004

My chemo will start again tomorrow, not looking forward to the SE's but if it's gonna kill all my cancer cell, I'm ready! I was hoping to start after Labor Day, but hey the sooner I get rid of all my tumors the better, right ladies! Hope all of you have little to no SE's and we can all do this together! Wish me luck!

naan1004

Well ladies, all went smoothly today, took a nice nap and I was done. Only took about 2 hrs, short compared to my past experience. I will be doing weekly Carboplatin for 3 wks, then 1 wk off for 2cycles. Was and will be a breeze! Feel so good I want to go Labor Day shopping early with my girls! Thanks for all the cheering! Wooparoo wooparoo!

mamabee

Julie, So glad your treatment is going smoothly. Hope you and your family enjoy the holiday weekend!

naan1004

We will, hope everyone has a fun and safe Labor Day weekend!

naan1004

Someone has kindly pointed out that I shouldn't tell people to demand scans and I do agree with her to a point. This is just my opinion, I am not a Dr, if I tell you to jump off a roof, would u? Please ask your drs what is right for you as an individual. I said demand scans because I didn't know I had the option. When I looked back at my journal notes from my previous breast cancer battle, I saw that they were going to do scans, but nothing was scheduled, I changed onc in between cause mine opened up his own practice so maybe that was the missing picture.



Who knows, but the fact that my new onc is asking me how do I know if I really was all clear after chemo, surgery, and radiation when I had no scans done? I was in shock, I didn't know! Once stage 2 triple negative, now Stage 4 of unknown origin with mets to brain, bones, lung, appendix, left neck, left shoulder, pretty much everywhere! They're still working on pathology! How crazy is this! I thought I was in the all clear! Living a happy healthy life with my 2 young girls (10 & 7yrs old) and husband! Why? Why? Why wasn't I given scans, what happened to close monitoring for the first 5 yrs, I didn't make it to 1yr? Why why why!!!!!! This is so frustrating!!!!!



I'm sorry to the new folks if I am freaking you out, but I want to believe I'm a minority and this doesn't happen to most of us. It just seems unfair! I did everything they told me to do, ate right, exercised, got blood tests done like clockwork, all normal. How can they be normal when I am Stage 4 with mets. I guess blood tests aren't very accurate either!

I apologize, for my rantings and ravings, but where else can I do this. My family is devastated right now and I have to act strong in front of them so I'll let myself go here. My elderly parents have to see their only baby daughter go through this not once but twice! If one of my children got this disease, I don't think I could bare watching them struggle and just die! I feel like such a burden on my family! They are all so supportive, but at what cost?



I will beat this no matter what! But I really really hate FCA! Where's the damn cure already, enough people have suffered and been lost! Stop taking mothers!!!!!! What will our babies do without us?

Mardibra

Scans after chemo?  Ive never had them either.  Hmmm....

naan1004

Mardibra, talk to your onc and see what they say first, and if u have any inkling of suspicion get scans!

naan1004

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!

Mardibra

Cancer treatment sucks.  Any little thing can set you off.  There is only so much we can handle.

rachelvk

Oh Julie - I am so sorry to hear about everything you've been going through. I haven't logged in recently. I hope the chemo and rads kick that cancer's butt.

I really agree with you about scans, but apparently insurance companies won't approve them unless you're Stage III at diagnosis. Otherwise, the way it was put to me was, they won't do them until you're 'symptomatic' of mets, and by the time a scan would catch it, you'd be symptomatic anyway. I don't buy any of that bullsh*t. But I guess you can have a scan one day and be fine, and the next day's the day a cell goes rogue.

Julie, I'm emailing you my link on Facebook. There isn't a group per se - but just if you want to stay in touch outside of BCO. And I'll definitely check out your CaringBridge blog. I'll be thinking of you and sending you lots of good, healing thoughts.

naan1004

Thanks Mardibra and Rachel!

naan1004

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!

rachelvk

I'm sorry you had such a bad day. Chemo does really make your appetite go wild - and you need to make your family understand that right now, your body needs food and you have to eat the things that your body can tolerate - and anything with a shred of nutrient is better than nothing. It sounds like they're trying to make up for it.

naan1004

Rachel, when u read my blog about my mom I think u will understand why I was so frustrated with her

naan1004

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!

naan1004

If your are taking steroids, read this! This is a post from one of my friends on Nov2011 chemo thread. To explain why I went ballistic yesterday from hunger. Very interesting and true.



13 hours ago, edited 12 hours ago by GrandmaV



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.



www.drrichardhall.com/steroid.htm



Here's his NCBI abstract:



www.ncbi.nlm.nih.gov/pubmed/43...



It's old information but still applicable.

naan1004

I have 3 fish so I will name them all of the above, Big Mac, noodle, and burger it is, thanks, love that!



I finally got my burger today, a double bacon cheese fat burger with chili cheese fries with bacon, wow, heaven! My mom didn't bat an eye, she finally gets me!



Had brain radiation 13 today, went well since I'm off the steroids, never again!

Mardibra

Roid hunger...the worst. But, my house was the cleanest it's ever been! Couldn't stop moving.

rachelvk

I'm lucky that I never had that effect from the steroids - but maybe it's a shame, because my apartment can always use a whirlwind cleaning! I don't know if I mentioned, but I did wind up moving last July, and my apartment is so much better. Still cluttered, but not as bad, and it has so much light and room I just feel so much better.

Julie - wishing you a relaxing weekend, and an abundance of good food! I don't remember if I mentioned it again, but don't forget about the olive oil - it helps both with keeping the 'plumbing' in good shape and also helps prevent dry mouth and losing your taste buds. I tried to take a tablespoon twice a day, and my while my taste deteriorated a bit toward the end, it held out pretty well and returned very quickly.

naan1004

Rachel, I'm taking probiotics and an all natural organic glasswort pills doing wonders on the plumbing, no problems at all, even after all those burgers!



Yesterday, I had a good childhood friend of mine bring over her 2 girls for a pizza lunch and pool party. My friend and I stopped seeing each other for quite a few years cause she was one of those friends who only called when she needed or wanted something, kind of selfish. For example, one day out of the blue she calls me when I was at ballet class with Olivia, then 2 or 3yrs old and asks me, "do you know where they sell pepper spray?". Mind you she had not called me for months, maybe even a year. There was no, "hey Julie how are you, can I ask you something?" Which would be what normal people do. Other times she called were when her husband sold insurance and she wanted us to open life insurance policies for our family. It got to the point that even her husband kept calling us soon after Olivia was born to try to make us open a life insurance/savings plans for her that would cost us $100/month, which we thought was ridiculous since Gerber has plans that are much cheaper! My husband up to that point had a great relationship with her husband, since they were the same age and both came from NY. He got so fed up with her husband constantly calling that we stopped answering their calls and meeting them at all. You want to know what's even funnier, one of my older brothers works for an insurance company and we have life, auto, past home insurance through him and wasn't planning on switching over to her husband.



All of our mutual friends shunned her out of our group of friends. I thought it was high time for her to return to our group and what better excuse than me being sick. At times like this, i kind of like milking that I'm sick cause people listen to me better, even my kids!

Anyways to make a long story short, all my mutual friends agreed to let her back into our lives. I had to tell her the truth about why none of us kept in touch with her and she actually finally got it and felt really bad for being so selfish. I asked her how many true friends she currently had in her life, she said none, I felt so bad for her but at the same time she really needed a wake up call. I told her being a good friend takes work and effort, they don't automatically stick around. You have to give and take, not just try to take.

She ended up staying for dinner with her kids and 2 of our other mutual childhood, middle school and high school friends came over for Korean BBQ dinner and my dad's famous kimchee stew, to die for! After I get better, we're going to market his kimchee stew and run a family business empire, hahahahaha! We all hugged, ate, cried, laughed, ate some more, and just hung out like old times, reminiscing

One of my friends, Connie, who came over is very pregnant, due end of Oct, but drove 1 &1/2 hrs with her husband just to visit me, mind you where I live is called the valley, yesterday was a cool 101. It gets really hot here, Fri was 109. For a very pregnant woman to endure that heat, wow. When I found out I was sick, I specifically asked the people around Connie not to tell her until baby came. She is 39 yrs old first time mom and has a lot of complications/scares with this pregnancy. I didn't want my news to jeopardize her or the baby's health. I thought I covered all the people who might tell her and I did. One of my idiotic friends, Sally, who lives in Korea right now cause her husband got a job there told her!

A little background on Sally, she visited me from Korea during my first battle with breast Ca and stayed til after the surgery cause she wanted to be there for me, awww sweet, huh, not really. She's another selfish one! I thought great she can help me with the girls and help around the house. She never once did the dishes, my husband was so ticked off by her. She didn't even clean up after herself and my husband had to. She borrowed our car to get around and rarely picked up the kids from school. I was like, why the hell are you here, you're making me work more than I need to? She had life so easy after getting married, she has no kids, her husband was getting his PHD in Indiana, so they lived apart and at times she acted like she was single. Going out with both male and female friends while her husband was out of state studying. Getting weekly mani/pedi, living the high life. I was busy trying to make ends meet, raising 2 kids and taking care of a husband, surviving cancer.

She took it upon herself to tell my very pregnant, emotionally fragile friend Connie that I had cancer again and this time it was Stage 4. I was so mad at her that I was about to buy a plane ticket to Korea and slap some sense into that girl! How insensitive can she be! How dare she! From what I heard later, she lives in a totally different time zone so she called her multiple time after midnight on a day before Connie had to work the next day! Is she kidding me! I went on FB and texted her saying she was no longer my friend and I couldn't believe she betrayed me like that. Her rational was that if Connie found out later she would be more hurt by it, well that's what I wanted and she would get over it. She has never been pregnant and does not realize the emotional drain of being pregnant in itself. She said at Connie's current pregnancy stage there was less likelihood of pre-term labor confirmed by another friend who is a nurse. Mind you the nurse friend was the other friend who came over and has never been pregnant in her life either. I don't freaken care what the damn textbooks say, don't tell her! I think Sally was shocked at my reaction, but you know what she deserved it. I couldn't hold a grudge and what's done was done, so I forgave Sally, but don't really want to see her for a while and intend on giving her one good slap in the face, am I wrong to want to slap her? I told Sally that if anything happens to Connie or her baby, i will never forgive her, so please pray for my friend Connie to have a healthy/safe delivery. OMG so much drama! Connie is the first friend to be having a baby boy, so excited cause most of my friends have girls. My girls are super exacted too, can't wait to hold him!