done with treatment!

I had my last radiation treatment on Thursday and I am so excited to be done! My skin could get worse for the next 2 weeks, and right the past few days have been worse, but any day it should turn around and start getting better. My neck hasn't had treatment for 2 weeks and has started to heal up. It looks better than I ever thought it would! The worst part was wearing stickers for 6 weeks and my allergic reaction to them. So, now I rest for about a month and go back to work in the beginning of Oct. I will have some more surgeries in about 6 months and can not wait to be really really done with it all!

Over the radiation hump!

I have completed 19 radiation treatments and have 14 more to go! I am burnt, itchy, tired, and moody. Sometimes I am so cranky I could do vicious harm to people, and other times I am laughing and joking like my regular self. So, you have been warned, I do not know when and where these moods will change, but I do try to just leave and not inflict my crazy moods on the people around me. I am excited that the end is getting closer, not cartwheel excited. The worst is yet to come so I am bracing myself and hoping for the best.
Ok,my hair is growing back nice and thick, and maybe even less gray, please do not let me be jinxed for saying that! I put a little product in it and it looks messy and kind of cute. I am happy with it, however it seems to be so bittersweet to me because of, in my opinion, the ridiculous behavior it brings out. People ask me if I love it, tell me about dreams they had of me with my long hair flowing in the wind, and some attack me rubbing roughly while drawling an annoying hooooowwwwww cuuuuuuute or oh my gosh, no one else could pull that off! really people? I think you mean well, I am sure you do, ok, I really hope you do. But these comments are killing me! Maybe that's why I want to do harm.... I am not sure what I would do to my friends if I was on the other side. However, I think it is like a pregnant belly, ask before you touch and NEVER, EVER, and I mean EVER mention how tiny they were just a few months ago. So applying the same philosophy would be ask if you want to rub or lick (yeah that was a fun one), and do not ever ever ever bring up my long beautiful hair that you never realized had so much gray. If you apply this logic when approaching me I promise not to punch you in the nose, kind of like a twisted game of tit for tat. When people say they want to touch it, I almost always let them, I even point out the softest spots, really it has never been softer, but it is new baby hair, you would never rub a babies head that hard! It is delicate and please do make even one strand fall out!
The other thing on my mind, if you are still reading after my hair rules tirade, is the under 40 cancer survivor. There are so many issues related to this age group. I am learning new things ever day! Did you know that our survival statistics have not improved since 1970?!?!?! OMG!!! We are the least represented in studies, are more likely to be diagnosed at stage III and IV, have an average annual income of $35,00, are the least insured group, and so many other terrible things! I love reading and learning more, but I am afraid to keep reading. Who knows what I will find!
If you are reading this as a note on facebook, please take a look at my blog page, I have links to other sites with cool info and pretty charts and graphs.... we are still a tin foil society right? http://janicebardone.blogspot.com/

Life after treatment

I will be officially done with treatment in one month! Yeah!! I am excited and very scared, not nervous, but truly petrified about what that life will be like. I know there was nothing I did to deserve or get cancer, but how can I avoid getting it again, with my age the stats are not good, so what can I do to make them better. If you look at international statistics, the good ol US of A has one of the highest cancer rates. I guess other states joke about California saying that if it isn't illegal, it will cause cancer. I have been doing a lot of reading on young adults with cancer. One of the topics I have seen more than once is our environment. A nonprofit lawyer, my dream occupation, talked about the fire retardants in almost every product we make now. Makes sense, I don't want to catch on fire, but in our attempt to de flame ourselves we might be causing more problems. While one chemical that they use might have been tested for harmful effects on our systems the numerous other chemicals and their combinations have not been. Ok, I am not going to go nuts and stop shopping at the gap where I am sure the jeans are full of dyes, fire retardants, and other chemicals to do just about everything from making my butt look better and my stomach flatter. But I do want to live the best life possible to avoid any unnecessary exposure. In this quest I found an excellent website that rates the potentially harmful effects from make up! Yes make up! One of my fav things in the world! I wear it almost everyday and love it! http://www.cosmeticsdatabase.com/index.php Check it out, look for what you currently use, and it is not just make up, shampoo, deodorant, baby products, everything is on there. Like I said I am not going to go nuts with this, but if I can use products and brands that are a little better for me, then why not?

books and rambling thoughts

There are a lot of books about cancer, some that are very medically informative others that focus on the emotional and social journey while others promise cure for changing your diet. When I was being diagnosed I read the medically informative written by doctor books. I bought 3 or 4, kept them in my bed where I was spending a lot of time recovering from the shock of my recently disrupted life. There was one book that I saw in a lot of blogs, at the book store there were a ton of copies and it was one of three books at Power of Pink on display. Crazy Sexy Cancer by Kris Carr with a forward by Sheryl Crow. I wasn't ready to read it until now. I would see it, flip through it, want to read it and put it down. I have done this at least 10 different times. Last night I suddenly needed this book like I need air to breath. I went to borders and bought it! Got it home to find the front cover and most of the forward slashed by a box cutter. I was so sad. I exchanged it this morning and am loving it! The author was diagnosed with a very rare cancer in her lungs and liver at 31 years old. Ugh, phone call, lost all of my thoughts......... sorry, I'll finish later when they come back to me.
Ok, I am back, a long break for me , I am guessing not so much for you. Anyway, I share a lot of similarities on the way the author has written this book. I feel less crazy and more understood than I have in a while. I bought another book that focuses on younger adults having cancer, the 20 and 30 year olds anyway. I am constantly reminded that I am not the normal demographic for this disease that already does a fine job of making me feel freakish. Both books talk about dating while going through treatment, finally! Most books focus on menopause, gray hair and other 60 + issues. It talks about the lingering teenage syndrome of being invincible when suddenly your own mortality is threatened. I don't think there is any great age for cancer, even in our 80's it sucks, but at 34 I am only a third into life. I am barely finishing school and deciding what I want to be when I grow up. I guess I am saying that I am happy for this new desire to read and connect with people close to my age. I prefer of course to do that in person, but so far not a lot of luck. So for now, I will enjoy the books and the online resources that I am finding.

One of my thoughts recently that is also in both books is the stop whining and take care of this. It is so frustrating to me to see people give up when they don't get the news they want. Or when they give up because it isn't their fault. I want to scream!!! My cancer isn't my fault either!!! But no one and I mean NO BODY IN THE ENTIRE WORLD can help me if I don't help myself. I have to want treatment, is it fun? of course not, do I enjoy sporting the official 9 year old boy summer buzz? F*CK NO, how about having one boob? nope not a joy either! And paying for it? Trust me, if I had the option I would totally chose make-up and clothes over medical bills. However, if I didn't do it, I would die. There is no question of that, and in fact I might die anyway, I might not win this fight, I might get hit by a bus too. People tell me how brave I am, but really I am not running towards treatment, I am running as fast as I can away from cancer. I appreciate the positive meanings in all of the comments that I get and i think I might have mentioned this in an earlier blog. People don't know what to say, they just say whatever they think someone in my situations wants to hear. There is some of that in the book too, Like when people share stories that are tragic in hope of bonding when all it really did was piss me off or scare the shit out of me. Or when people do the "at least" thing that totally devalues the way I have lived my life, like at least you don't have kids or at least you aren't married. Ok? because by not having kids or a husband makes me expendable? I understand that if I had kids my life during treatment would be more difficult and of course kids would be scared and affected by a mom going through treatment, but maybe we can say that in a different way. I like that this book jokes about these awkward situations and makes me laugh. When I joke about it to my friends sometimes they look at me like is it really ok to joke about it? Where is the line for comedy and cancer? I am not sure, but I would know it if it was crossed.
ok, enough rambling thoughts for tonight, I have so many lately. Weird ones, funny ones and really really off the wall ones too. he he he

Radiation- 7 days in

I just wanted to update everyone on how radiation is going. I finished day 7 this morning and have been doing well. So far my biggest side effect is an allergic reaction to the stickers they have on my body. I had tape and stickies on me for about 8 weeks straight during my surgeries, so this little 6 week stint wont be that bad. I have a little redness and irritation but it isn't terrible, it feels like a light sunburn, just annoying not painful. The doctor said I could use Tom's all natural deodorant, not great but trust me better than nothing! My friends were really happy to hear that! I'm a little more tired than regular, but I take a nap and go to bed a little earlier, really easy to deal with that :) that could be from the heat too! The best part is that I have lost 6 lbs from just not being on steroids anymore! Love that idea!!!
They monitor me pretty well too, once a week I get my vitals taken, weight, temp, blood pressure and oxygen something. My blood pressure has been great! the lowest it has been since I was diagnosed, maybe I have just relaxed about it all, it was never high, in fact I never even got out of the low zone, but it is usually pretty low. Ok ramble... One a week I see the doctor and once a week they take films to evaluate where the radiation is actually being sent and comparing that against the original plan. If I loose weight or anything that changes the plan so they have to monitor to make sure the plan is actually being carried out.
Ok, a little boring for a blog, but I have a few good ones I want to share and will try to get to them this afternoon.
Have a good one! Love Janice

Long time no blog

So much has happened since my last blog. I have a lot to report and am not sure where to start, my head is swimming with all of my mental notes for blog topics.
I guess I will start with what has been on my mind and in my heart the most. My Grandpa passed away July 6th from cancer. I am so sad that he is gone and miss him a lot. I would visit him in the hospital every few days and every once in a while I have mini panics that I haven't been to see him and I remember that he isn't there. I know that he is much more comfortable now and is no longer suffering. He wasn't happy that I had cancer at the same time he did, but it was something that we were both going through at the same time. We could share stories and know what the other was talking about exactly. Radiation was his first treatment and he would show me his scan card and tell me all about it. He couldn't wait for me to start. I even showed him my scan card when i finally got it. Ironically I was supposed to start radiation on the day of his memorial service. Instead I started the next day so I could attend his service and have dinner with my family and not worry about what time it was and needing to leave for an appointment. The service was really nice and I think represented him very well. My grandpa is doing really well, the rest of the family too. We were lucky to all have time to say goodbye and begin to brace ourselves for it, if that's possible.

As I mentioned above the day after his service I started radiation. A few bumps in the road before the start day. One of the techs was really terrible and I ended up calling to make sure the entire six week treatment would be spent like that. I have seen her 3 days in a row since and I think she was really just having an off day. She is actually really nice now. I hate calling and complaining, but this is important to me and I refuse to pushed around. It really was a bad appointment, almost everything went wrong and by the end of it I had purple marker up my jaw and an appointment schedule that would never work. Ok, sorry, I am not dwelling on it, sorry, I have moved on, all things were fixed and I have been having great appointment s since then.

Ok so radiation. So far has been pain free. I got my tattoos on Wednesday, my second day after my plan and levels were approved by the doctor. The tattoos were something I had been very curious about. They use a syringe and inject a small amount of ink. They are tiny small, smaller than a freckle but once you know what they are, you can see them easily. I think I have 5. Just little black dots and really they look like really bad blackheads! Crazy! The radiation room is really cool, no wonder grandpa was so excited for me to start. I can really see why he loved it! You lay on a table, kind of like a a CT scan, but the machine mostly moves around you. The lights go low and lasers come out, red and green! The green ones are grids and are all over the room the ceiling the walls, everywhere! THe red ones come out of the machine and I only see them on one of my last doses when the radiation is shot from behind. As the machine moves and realigns for that dose it crosses my right eye. The first few days I was surprised when it went right in my eye, but now I know when it is coming and close my eye, doesn't take me long! So 3 down and 30 to go, I go Monday through Friday and each appointment has taken about 30 min. I have my vitals taken every other week. My blood pressure was really good today.

I hate the stupid no deodorant deal though! I can use Tom's All Natural, but it isn't good at its job and have been very aware of my hygiene!

Ok, I think that is all I had floating around in my head right now. I will post again if I remember something :)

Stanford Details

I went to Stanford on June 25th to get a second opinion about radiation. My doc here thought I might not need it. My treatment plan has been less than traditional and that has made it a little harder to make decisions on the next course of action. So, Stanford doc recommends radiation. There were many factors to consider. I had a chemo treatment before I had surgery. My lymph nodes were clear at the time of surgery but the chemo might have done that, there were some indicators saying that my lymph nodes may have actually had some cancerous activity. But it is impossible to tell now. Another things to consider are my age, that was a really big one when considering the occurrence statistics. My cancer was also poorly differentiated. Meaning my cancer cells were highly mutated when compared to my other cells. That's not good. However my HER2 was negative, that's good. So, after weighing all of the factors, radiation it is. I was prepared to take whatever opinion the Stanford doc gave. She only does radiation for breast cancer, I researched her and think she is one of the best in the world! This is what she has devoted her life to do! I loved how much information she gave me, how willing she was to answer any questions, the time she devoted to my case, and she talked with Heidi and my Dad too! Her resident was thorough and she took time to really feel for my lymph nodes. She gave me more information that anyone else has and I think I have gotten a lot of good information. I loved it! I feel good knowing that I am making a really good decision for me and my situation. People are asking why I even went for a second opinion and not just do radiation. It's really not that simple though. Clearly radiation can be dangerous in some situations and over treating cancer can be just as dangerous as under treating it. The decisions my team and I are making are a little different than many breast cancer cases because of my age. 40 and under is rare and a lot of studies don't include my age group at all. There are a lot of studies on survivors 10 years out, but not 40, and I would really like to make it at least that long.