Friday, November 30, 2012

Silicone vs. Saline and other thoughts

Hey everyone!  I thought I'd give another update for those who are interested. 

If you don't already know/haven't seen my previous posts, I have Fibromatosis.  It is, as I'm calling it for now, a very rare form of breast cancer with some benign qualities and some malignant qualities.  I had a lumpectomy to remove the tumor, but the margins weren't clear, so I'm going back in for a mastectomy on December 27.

I met with my Plastic Surgeon again today, and we had a longer (hour long) consultation discussing options, looking at pictures, etc.  He also pulled out a loose stitch from my lumpectomy -- OUCH!  But besides that one thing, the appointment went very well.  I'm still not really sure exactly what I'm going to do, but I still have a lot of time to figure that out.  Even after my mastectomy and tissue expander placement on the 27th, I'll have about 3-4 months or so before my exchange surgery.  So questions like silicone vs. saline and how big of an implant I'm gonna get have time to be answered.  I'm also not sure if I want to try to do nipple reconstruction or not, but that has time to be decided as well.

I am so lucky to have the people in my life that I do.  Shout-out to my Mommy, Lisa, Nicole, and Justin, who have all been soooo supportive and helpful through this whole thing.  All of my friends and family have been great.  My mom has been with me to every appointment since the very beginning and took care of me when I was recovering from my first surgery.  Lisa has been my mentor, she went through the same process as me with the same surgeons and everything.  She has accompanied me to both of my consults with the Plastic Surgeon, and she has been a great resource for me.  Not only that, but she's very caring and it's really nice to have someone to talk to who knows exactly what I'm going through.  Nicole is great, I can call her any time I need to vent or just be sad and she's always there for me.  She even wants to go with me when I get my tattoo on my breast - and she wants to get one too.  That's why she's my boo for life.  And Justin - I am so blessed to have him in my life.  He has been so great to me, he's going to be with me for my surgery and the first part of my recovery.  He's been there for me since the beginning, sticking by me and supporting me.  The timing for meeting him is kinda bad, since he met me right when this was all starting and now he has to deal with it too, but also SO good for me, since I have him to support me and comfort me. 

I am also privileged to be so well cared for by my doctors and nurses.  I feel like they all really care about me, they have all been very compassionate, helpful, and supportive.  I really like all of them.  I loved the nurse I had before my lumpectomy, she liked me so much that she found me when I was in recovery even though I had a different nurse - just to check up on me.  I'm thinking about requesting her to be my nurse for my mastectomy too, if that's possible. 

Finally, I have to thank the wonderful ladies of Breastcancer.org - they have all been amazing.  They are all so strong and brave, and having them to talk to has been immensely beneficial for me. 

Having all of these people around me has really made this whole process a lot easier.

To be honest, I am starting to get scared.  Mostly what I'm scared of is the impending freak-out that is bound to happen.  I have had a few freak-outs, but for the most part I have been handling myself pretty well through all of this.  I just know that at some point, as my surgery gets closer, it's all really going to hit me what is going to happen.  I'm going to lose my breast and my nipple.  And I AM going to freak out about it.  I mean like REALLY freak out, not just cry a little and then be done with it.  I am afraid of what that's going to look like and I am afraid for whoever has to witness it.  Hopefully it won't be too bad.

Alright, that's all for now.  Thank you to everyone who has been a part of my journey, I appreciate you all. <3 br="br">

Saturday, November 10, 2012

Update on my journey with fibromatosis

Yes, it is Fibromatosis as the biopsies suspected.  And yes, it is a journey.  I had my lumpectomy surgery on October 29, and I thought that was going to be the end of it.  Unfortunately, it's not.

Considering this isn't technically a form of cancer depending on who you talk to, it certainly acts like a cancer.  My pathology report and surgeon told me that I don't have clear margins, which I'm pretty sure she knew when she was doing the lumpectomy.  It had already grown way too big.  She took out three different pieces of tissue, one measuring 9 x 2 x 2 cm.  And the margins still weren't clear.  It's still in me and needs to come out.

My whole breast needs to come out.  I found out a few days ago that I'll need to have a mastectomy.  I already suspected that when my surgeon told me that I would need to have more surgery, because she mentioned having me talk to a plastic surgeon.  So when I heard that word in the doctor's office, it didn't shock me as much as it did my mom.  I guess this is one of the times that my "jump to conclusions and expect the worst" nature was actually helpful.  The only thing I didn't expect was that my nipple won't be spared.  (I figure since you all already know I'll be losing my breast, might as well say the whole truth.)  That part was really sad to me at first, but I'm feeling a little better about it and about this whole thing.  I am so incredibly blessed to have people in my life who have been supportive and understanding.  I am very lucky to have a wonderful community of online breast cancer survivors to talk to about all this and get advice from.  And, as unfortunate of a coincidence as this is, one of my neighbors who I have known my whole life (I was good friends with one of her sons when we were younger, and my brother with his brother) recently had a mastectomy by my same breast surgeon and reconstruction by my plastic surgeon.  She has been a great resource to me and I'm sure she will continue to be, helping me along this journey with advice and encouragement and complete understanding.  I also really like my breast surgeon and my plastic surgeon.  Both are very kind and caring people, and I am hopeful that at the end of all this I will feel almost whole even though I'll only have one real breast.

Since I won't have a nipple, I've been weighing my options - try to have it reconstructed out of skin/tissue, have it tattooed on, or go without one.  I hadn't even considered the idea of having an artistic tattoo done to cover the scar until my neighbor told me that that's what she was thinking of doing.  I LOVE that idea!  I keep looking at pictures online of tattoos covering mastectomy/reconstruction scars, and I really like some of them.  I know that whole part of this journey isn't until months down the road (at least), but you know me, I love to plan ahead.  I've already been thinking of what I'd want my tattoo to look like.  I'm not sure if that's what I'll end up doing, but I like the idea for now.

My mastectomy is scheduled for December 27.  Just in time for new years!  Haha.  So much for my new years plans.  At least I'll be able to celebrate Christmas like a normal person - I'll just have to celebrate new years a little early this year.  While I'm still under from the mastectomy, my plastic surgeon is going to come in and place the tissue expander in with a small amount of fluid.  So I won't be completely flat when I wake up, just mostly flat.  After that I'll have to stay a night in the hospital; unless I feel like a "rock star," then my plastic surgeon said I can go home that day.  But I'm thinking I'll have to stay overnight and I'll be able to go home the next day.  The recovery time for this surgery will be longer than my lumpectomy, it will take about a month before I can go back to mostly normal activity.  The first two weeks I won't be able to do much of anything.  I'm glad the new Kindle HD that I want will be out by then, since I'll have a LOT of downtime.

Then, gradually over the next 3 or 4 months, I'll have my expander filled with saline.  They have to do this over time because there won't be much tissue to work with after the mastectomy.  Once that process is done, I'll have my exchange surgery and the expander will be replaced with a "permanent" implant.  It's not really permanent since I'll have to have it replaced every ten years or so.  Then once I'm all recovered and healed from that, I can figure out what I'm gonna do about nipple reconstruction or tattooing or whatever.

All this fun stuff going on has been really bad timing with my just getting hired back at the racquet club a couple weeks ago.  It's just been too stressful with all the appointments I've been going to, researching, talking to genetics counselors (since fibromatosis can be linked to Gardner's syndrome, I might have to have some tests done to make sure I don't have that), and planning surgeries.  I gave my two-weeks notice.  It feels weird since I just started there, but I really need this time to focus on me, my family, and my school.  [Side note: I've been taking classes at CRC because I've decided to pursue my old dream of nursing.  Especially since my experience with so many nurses from this whole ordeal, it's just made me want to do that even more.  I love the idea of being able to help people the way they have helped me.  I know that's a bit of a step from my Aquatic Biology degree, but it's not too far from it with all the biology classes I took in college.]  And once my classes are over in December, it will be nice not to have to worry about work at all while I'm preparing for and recovering from surgeries.  My boss was very kind and sympathetic.  She told me they were going to miss me there and that once this is all over, they'll be right there waiting for me to come back.  It is comforting to know that I'll still have a job there if I want it after I'm healed.  I am glad that we ended on good terms and that this might not be the end, depending on what's going on in my life in 6 months.

I'll try to keep this updated throughout this process.  I know this is a really rare and unique situation for me to be in, but breast cancer isn't as rare and it can happen to anyone.  I will stress again to everyone: pay attention to your bodies!  And check your breasts monthly!  Even if you're young like me, it is important to be aware of any changes in your body.

Saturday, October 6, 2012

Breast Cancer Awareness

I haven't updated in almost a year!  Time has been going so quickly, plus no one reads this so.. yeah.

Anyway, a lot has happened in the last year.  I have had a few health scares, along with a recent startling diagnosis. I am someone who is more susceptible to skin cancer than most, with my fair skin and abundance of moles, so I am always paying attention to any changes in my body.  I advise everyone else to do the same, as the human body is amazing and changes can often be ways for it to tell us that something is wrong.

This past January (I think) I had a mole removed and the pathology report came back as moderate-severe atypia.  I had to go in for a re-excision to make sure it wasn't malignant and that all the margins were clear.  The re-excision was done this past February, and I was fortunate in that everything was fine.  Whatever it was, I caught it early, and got rid of it before it could become worse.

Now, fast forward to September.  I know I am susceptible to melanoma, and one of these days I was actually kind of expecting to be diagnosed with it.  However, I hadn't even considered the possibility of me getting breast cancer.  (At least, not for several more years, since it is so rare in women my age).  About a month ago, I noticed a change with my breast.  I don't want to go into too much detail, but when it hadn't gone back to normal after a few days, I did some research.  I realized that most of the causes for this particular change were connected with aging or with infections or diseases which I was pretty sure I didn't have.  The other possible cause?  Breast Cancer.  I know this is unlikely at my age, but it was seeming like the most likely thing out of the other possibilities I came across.

I made an appointment with my GP, and she was quick to refer me to a Breast Specialist.  The BS referred me for an ultrasound, which found an "area of concern."  They didn't know what it was, so I had three biopsies and a mammogram.  The ultrasound, biopsies, and mammogram all happened this past Monday, and I got a call from the Radiologist on Wednesday that my biopsies needed further testing and that I would have to wait 3-4 more days for the results.

That was unsettling.

I went the next couple days worrying, sure I had to have breast cancer.  Then on Friday morning (yesterday) I got a call from the BS.  She told me that they still didn't have the final pathology, but that she had spoken to the original Pathologists and they told her that it definitely wasn't breast cancer.  Instead, she said it might be something benign called Papillomatosis that they might have to remove.  She told me I could breathe a sigh of relief, but for some reason (my own intuition I guess), I didn't feel the relief like everyone else did.  Something didn't feel right.  My mom was next to me when I got the call, and she hugged me with happiness.  She informed my extended family, I called my brother and told those who I had informed of my scare the good news.  I hadn't told very many people, since I didn't want to bring unnecessary stress into people's lives if it really was nothing.  My dad was relieved, my friends were relieved, everyone was relieved except me.

So then, later that day, around 4pm, I got another call from the Radiologist.  I was babysitting the kids at the time, but Caden was playing his video games and Taylor was upstairs, so I answered.  He asked me if I had time to go over the final pathology with him, and I said yes.  His tone sounded weird, not excited like it should have been if he were calling to tell me I didn't have cancer.  He told me I had something called Fibromatosis - Bland Spindle Cell Proliferation.  "It's not malignant, but it is a form of cancer and will need to be removed."  "How is it not malignant if it's cancer?"  "It doesn't metastasize and you won't require chemo or anything like that."  I guess it is considered a cancer because it is locally invasive, and it has a high frequency of recurrence.  He told me he would refer me to a surgeon who would contact me next week.  And he said it was REALLY rare, like less than 1% of all breast tumors.  I later looked it up and saw it accounts for about 0.2% of all breast tumors.

What are the odds?  Well, obviously 0.2%.  Or even less, since the odds of me even getting a cancerous breast tumor are low at this age.  Crazy.

I consider myself lucky, though.  Even though this is an annoying pain in the butt, it could have been a lot worse.  And I was expecting it to be worse.

It's frustrating, though.  I haven't been sleeping well for about a week now.  I don't think the bad dreams will stop until after I get this thing out of me.  I'm hoping that happens soon.

What I've learned from all this: pay attention to your body and trust your intuition.  Even if it looks like a subtle change, if you feel like it should be checked out, get it checked out.

Saturday, October 15, 2011

Susie's engaged!!

So this is old news now, and her name isn't really Susie but I called her Susie in a previous post, but my dear friend and boo for life Nicole is engaged! I'm mentioning this because I felt like not studying and this is probably the most exciting news since my last post.

Hmm, what else is new. I'm in my last year of my undergraduate career! It's crazy! Today at my internship I got to train one of the newbies on how to tag pictures of coral. Luckily I don't really have to do that anymore since I can do sample sorting, because tagging is probably the most boring thing in the world. But it was funny, she is in the exact same position as I was in when I started interning there exactly a year ago. 3rd year, taking almost all the same classes I was, same major.. it made me feel slightly nostalgic even though it was only a year ago.

Oh also, I'm not living in Isla Vista this year. I never thought I would say this, but I kinda miss living there. Even though it is ridiculously loud, and gross, and bug infested, and expensive, and did I mention loud? It was nice to be so close to everyone, I feel kind of far away. I don't live that far away but still, I can't just walk over to my friend's apartment. Living away from it is really nice though, it's super quiet and I have my own room and bathroom. Can't beat that. Plus I can always hang out in IV, it's not like I never go there. So overall I like the new living situation.

I can't think of anything else remotely interesting to say about my life, so I'm going to close with this: I cannot overemphasize how much I appreciate it when people show their appreciation for my efforts. It just shows me that it was worth it. Today someone thanked me for something I did, and it wasn't even like it required much effort on my end, but the person was so appreciative and it just made me happy. So yay for that.

Adios amigos.

Postscript. Thank YOU if you actually read this, I appreciate it. :)

Friday, May 13, 2011

SPF

About 4 years ago I went through probably the most scary few days of my life. I went to the doctor, and she told me that I had 3 suspicious moles on my back. Everyone knows that I have a billion moles, but I never really thought that they were dangerous. She immediately removed them for biopsies and tried to remain calm but she seemed..nervous. Everything happened so fast, and the paper that went off to the lab with my moles read "Melanoma suspected."

MELANOMA? Skin cancer? Suspected? I was left with painful wounds (luckily my mom was there to help me change the bandaging every day, even that was painful) and this sense of tremendous fear that I had a deadly disease. Not to mention I had to stop working as a swim instructor just a few days before the session was over. I did so much research and found a lot of good stories about surviving and everything going fine, but I also found a lot of tragic stories about young people dying because they hadn't caught it early enough, and it had spread to their vital organs.

Who knew if I had caught it early enough? What if I was going to die from this in a few years or even less?

I was terrified. Here is an entry I wrote in my journal:

(First some background, in the entry prior I had said I wanted bigger boobs and a really expensive camera)

"6/13/07

So, I'm changing what I want. I want to NOT have melanoma. But since I most likely do, I want desperately to be in stage 0. That would be just fabulous.

CANCER SUCKS!

This is so unfair. I am NEVER EVER tanning again. EVER. Fake tans for me.

God, please let it be in stage 0. Or maybe even stage 1, but preferably stage 0. That would be great.

I have to wait 10-12 f***ing days for the biopsy results. I'm gonna go crazy. I'm losing my mind. Please dear God don't let me do chemotherapy or radiation. I just wanna live and graduate and go to college. Oh so badly. I'm not ready for this. At all.

How can this be happening? This was supposed to be the best summer ever. It's quickly seeming like one of the worst. And there have been some pretty bad ones.

I'm so scared. I'm trying so hard to be optimistic. But it's so hard to be optimistic when the word "cancer" keeps ringing in my head. It's such an ugly word. Ew."

(I went on for a while longer repeating how scared I was and how unfair it was.. you get the idea.)

Those days waiting to hear the results were the most torturous of my life. I felt so many emotions all the time and I didn't know what to do with them all. I remember being out in the backyard with my mom and I sat down in a chair and the chair broke because it was an old flimsy chair and I just burst into tears uncontrollably. Not because I broke the chair but because I felt broken myself.

I was very fortunate, because that was the worst of it.

"6/20/07

YAY!! I don't have cancer. Thank the Lord. I'm so happy. And I feel so loved. Everyone is so relieved. And Chris called and told me that Mom called him and told him and that he was happy and relieved. He's so sweet.

I can't stop crying. But this time they're happy tears.

I was so scared that I was gonna have melanoma and that I'd have to go through all this stuff and that I might die. And I am so NOT ready to die. Not even a little bit.

This whole scary experience just made me more aware of how much I value my life. And how I need to be really careful about the sun. BUT I AM JUST SO F***ING HAPPY! :)

Happy to be alive. Just like my girl Sydney. Every day she wakes up and prances around like a puppy. She's just happy to be alive.

I finally stopped crying."

Basically, that experience is why I'm so pale. I used to be tan all the time because I was always out in the sun (swim team, soccer, swim lesson teaching.. just the love of the outdoors) and did not wear sunblock as much as I should have. But now the scars on my back remind me of what I went through because of it, and I know it could have been a lot worse. I am much more careful about the sun now.

However, as the years passed since then I seem to have gotten complacent. I went to Catalina a few weeks ago, and of course I wore sunblock. But I was out in the sun for extended periods of time and didn't reapply as I should have, and I ended up with a sunburn. Now I have a nice tan (at least, for me) but also damage to my skin that I can't afford. My brother reminded me that I really need to be careful with this video, and it's so true. We all need to be careful.

http://www.youtube.com/watch?v=_4jgUcxMezM

Postscript. An old blog that I'm finally posting. Cheers.

Wednesday, April 20, 2011

I have...

a bazillion gazillion drafts that I haven't published. Some where I'm really happy, some where I'm severely depressed, some where I use quite a bit of foul language... Some are extremely well written (if I do say so myself...) but never completed. Some I really want to publish but I would first have to edit a few things, and I'm much too lazy for that. So, they shall remain as drafts for the time being. They date all the way back to over 2 years ago when I first started this blog thing. It's kind of funny seeing my mood and personality transition over the years.

In the meantime, I guess I'll post a new one. I don't think anyone really reads this. I haven't made it very publicly known. I think I posted a link to it on my facebook status once, so anyone who saw it then knows about it but even then I don't think they still read it. So I never really know who I'm blogging to, besides my brother and one other random follower haha. But that's okay, this is more for my own benefit than anything. I write to soothe my soul. It's all purely selfish.

So, uh, I don't really have a lot to say. Life has been going pretty well, but also going by way too fast. I'll be graduating in a little over a year. That's insane! I have absolutely NO idea what I'm going to do once I graduate. I mean, I have some ideas floating around, but who knows.

Every quarter I have the goal of straight A's, and I have gotten close.. but this quarter I'm going to actually do it! I can feel it! I mean I'm only taking 13 units... it can't be that hard. I got an A on my Spanish 114C midterm.. and I have a feeling I'll get an A in the class since it's the same professor I had for Spanish 100 last quarter.. and the class is EXACTLY the same so far. Also I had a midterm this afternoon for EEMB142C and I think I did well. Not trying to brag, but ..who's even reading this anyway? Who cares? Maybe I am bragging, no one would ever know! lol.

Also, I am going to get back into shape. My excuse for the break in working out has been this lingering cold thing going on, but that's finally just about cleared up so I can't use it as an excuse for much longer. I am the proud owner of Insanity, so I will be forcing myself to get back into that soon and then in 60 days I will have a beach body, woo!

It's not like I have a ton of free time, though. I really should be working on my chem lab that's due tomorrow morning at 8am sharp, but you know how it is. I'm almost done, so that means I'll have to squander my time for about another hour and then rush to finish it so I can go to bed early so I can get up early and not be late.

Speaking of being late, I ruined my perfect on time streak at work. First, my Saturday morning shift, but I was only like 4 minutes late so it really wasn't that big of a deal, but I think that was my first time being late in my almost year of working at the library. But THEN, yesterday morning. My shift started at 8, I woke up at..... 8:10. I left the apartment by 8:19, hahah. It was the fastest I've ever gotten ready I think, and of course I looked like crap during my whole shift but oh well. I was 26 minutes late :( (I biked all the way there, parked my bike, ran inside and clocked in all in 7 minutes though, pretty impressive huh?) I'm sad, that probably ruins any chance I might have maybe had at being employee of the month, I mean it was really the only thing going for me and now it's gone haha. jk. Kind of. ...

Okay that's enough rambling about that. I guess I'll work on my discussion, even though I really don't want to.

Adios <3

Postscript. Happy 420 to those who celebrate! I didn't, but I think the guy two seats over from me did right before my midterm.. hahah.

Wednesday, October 13, 2010

An Update

I haven't written for a while, and I'm sure all two of my followers are wondering what's going on in my life. So here we go.

I love love love all my classes this quarter. Except Hydrology, which is filled with busy work like drawing grids and counting hundreds of squares haha. But I can deal with that since I get to take awesome classes like Aquatic Communities. The lab for that class is so cool, we get to do fun stuff like go to Mission Creek and perform competition experiments and stuff. I think next week we're going to the tide pools, yay! And I have no class on Fridays! Annnddd I just switched one of my shifts from Sunday to Tuesday night so now I have the entire weekend off! So even though my weekdays are incredibly long, I have a nice long break to relax/study haha.

Speaking of work, I'm working at the library still which is going well. That job is so relaxing, except when we get random rushes. But even then they don't last that long and it makes the time pass by more quickly.

I'm finally going to get SCUBA certified! This weekend actually! 2 more days until the first class!! Not that I've been counting them down or anything. I also joined the SCUBA club on campus and am hopefully going to go diving a lot this year. And next year and forever. Hehe. I wish I hadn't kept putting it off, but oh well. It's never too late! Diving definitely isn't cheap though, I've spent hundreds of dollars on equipment and that's not even all of it. I'm renting all the hard core stuff like tank and wetsuit for the class I'm taking, but if I go on regular boat trips and stuff I might have to invest in my own equipment. We shall see.

I feel like I'm just going on and on about myself, but I guess this is my blog so I can do whatever I want haha.

I started volunteering at the Ty Warner Sea Center, I'm hoping to get to work Friday mornings when all the school kids come in. That should be fun. I wandered around after I met with the volunteer coordinator person and the place is sooo cool! They have one of those awesome sun starfish or 11-armed-seastars or whatever they're called, I'm not really sure. But they're so cool. And my favorite animal, the octopus! And sharks! And sososo much more. And I get free membership to visit there or the Santa Barbara Museum of Natural History whenever I want, and I think I get guest passes too. And discount at the gift shop! So exciting.

Hmm, what else. Well I guess I'm done rambling about myself for now.

Adios! <3