December 2, 2011

Well, it’s been brought to my attention that I haven’t updated my blog since September…ummmmm….well…..I’m blaming it on chemo brain!! :o)

A lot has gone on in the last few months, so I’ll try to sum it all up without writing a complete novel in one post. 

I had an AMAZING time on the retreat! I met so many truly amazing women and it was a very uplifting experience that I didn’t even realize I needed. My friends and family are wonderful and I absolutely can’t complain one bit, however there’s something to be said about being surrounded by people who actually understand what you’re going thru. I explained it to my mom by saying, Imagine when you were pregnant that you were the only person you knew who had ever done it. You could tell people what it felt like and the emotions, weird pains, etc. and they could do their best to understand, but no one would truly “get it”. I did the same type of scenario with my husband – only I used his military experience. I told him to think about the difference between talking about the war with a civilian vs. another veteran…big difference. Well that’s what it’s like for me. I have all these amazing people around me who help me and listen to me and basically do whatever it is that I need, but I didn’t realize how much different it was to be around people who “got it”. And the weird part is – OK don’t think I’m kooky when I say this – but I actually went thru about 3 or 4 days of depression when I got back. It was like I was on this high or something while I was gone, and then when I got back to reality it just hit me like a ton of bricks. I didn’t even know how much I needed it or what “it” really was until I got back and didn’t have the support of my “Boobie Sisters”.  I did a lot of soul searching and a lot of much-needed crying, and it was amazing how much better I felt! Thru this whole cancer fiasco, I don’t think I’ve ever truly processed everything – I’ve been concentrating more on surviving – and the retreat allowed me to do that along with so much more! Here’s a link to view my pictures from the weekend: https://picasaweb.google.com/artangel74/WomenRockForTheCureRetreat

My tissue expanders (i.e. brick boobies) are doing really well. I will end up being a little smaller than what I wanted, but my right side was really tight from all the radiation and they just didn’t want to risk any tearing or botched surgeries just to get a little bit bigger implant in. I had 6 fills and I’ve got 350 cc’s of saline in them now. I’ll sit for about another month (more on this later) and then they will replace the tissue expanders with my permanent silicone implants. I’m scheduled to have that surgery on the 27^th of December, and based on how well Sadie did with her final surgery, I should only need a few weeks to recover. Once that is done, I’ll have a few more minor surgeries to get my headlights and then I should be done with the girls!

So when I said I had to sit for another month – well that’s just been more drama…I swear I have more than a 16 year old girl! The last month or so, my hip has been hurting, and it’s been progressively getting worse. My oncologist is out of the country for about a month, so I scheduled an appointment with the doctor who is taking care of her patients while she’s out. I can’t remember his name, but I lovingly refer to him as “Dr. I Don’t Know” b/c I swear those are his three favorite words! Anyway, they did an x-ray on my hip and it showed a spot pretty much in the same area as the tumor that they just did radiation on. So since Dr. I Don’t Know didn’t know what it was (I’m tellin’ ya…he seriously said it like 300 times…well, I just don’t know…ya know, I’m not really sure…huh, I don’t really know…yeah, you get the point) he ordered a CT scan. He did that b/c the most recent scan he had to compare it to was a CT scan from right before they started radiation and he wanted to compare apples to apples, so to speak. Anyway, the CT scan did in fact show a tumor in the same spot and it was bigger than the one from a few months ago. Well this was really confusing to me b/c when they originally found the tumor, Dr. Burt had me go in and get a biopsy done before they did radiation b/c she wanted to know if it was ER/PR positive (grows b/c of estrogen). The biopsy showed that it WAS in fact ER positive, which is why I had the emergency hysterectomy b/c that’s how we knew the estrogen inhibitor wasn’t working. Are you confused yet?! Basically, the original tumor in my hip was there b/c I had estrogen, so they took out all my estrogen and radiated the little sucker so in theory, it should be gone b/c I now have NO estrogen in my body (no more girl parts AND I take medicine to make sure any traces are gone as well). So the question now becomes – is it a NEW tumor that maybe isn’t related to estrogen or is it the old one that never went away? And if it’s the old one that never went away (kind of suspicious b/c it’s literally in the exact same spot) what in the H – E – YOU – KNOW – WHAT is making it grow?! Well this is exactly what I asked Dr. I Don’t Know and guess what he said…no really, guess…yep…I don’t know. Sigh. So this is the point where I officially became DONE with Dr. I Don’t Know and I went to visit an orthopedic oncology surgeon, Dr. Rosenthal.

Dr. Rosenthal is kinda old, but he’s cool. He gets my twisted sense of humor, so we get along great! He walks in the office and an entourage of what looked like 12-year old doctors followed him. I asked if I won the doctor lottery or if I was really that jacked up that I needed 5 doctors and he just kinda laughed and introduced them. I don’t remember their names; I just called them the Doogie Howser Club. Anyway, he had read my scans and my charts prior to our meeting and so he spent the next 20ish minutes going over all my options. I won’t bore you with all the options (most of them sucked anyway); I’ll just tell you what we’re doing. I go in next week on the 7^th of December (this is why they had to reschedule my last boob surgery to the 27^th) and I’ll have a partial hip replacement. The tumor is on the side of my acetabulum (the ‘cup’ part of your hip) which is good news b/c if it was in the center it would be in the ‘weight bearing’ area and they would probably have to do a full hip replacement. So what he’s going to do is make an incision thru my butt-cheek and he’ll go in and cut my bone open, take out the tumor, fill the bone with a synthetic bone material and then stitch me up. I asked him if he could pick a different place to cut me open b/c I’ve got a really cute butt and when you’ve got boy-hair and bricks for boobs, a cute butt is really something you’d like to hold onto. He didn’t even break stride and he responded with, “you’ll still have a cute butt; it’ll just have a cute little scar to go with it”. See – this is why Dr. R and I get along great! The Doogie Howser Club kind of had horrified looks on their faces though. I don’t think they knew exactly how to take me. And now that I think of it…I never did figure out why exactly they were there. Huh, weird.

So obviously the bootie-scar is kind of a bummer, and I’ll have to use an old-lady walker for about 2 – 3 weeks (I can’t use crutches b/c of all the lymph nodes they took out) but those are really the only “con’s” to this option that we went with. One of the big “pro’s” is that they will be able to get the tumor completely out. When cancer cells attack the bone they ‘eat it’ from the inside out – kind of like termites in wood – and it turns the bone tumor into a jelly-like substance so all he has to do is just scoop all that stuff out. Another pro is that he can then send the cancer-jelly to pathology and they can hopefully tell me some details about this tumor – why it’s growing, if it’s a new one, etc. The final “pro”, and this one is by far my favorite, is that my sister Kelsey is going to come to the hospital and bedazzle my walker! SAAAWWWWEEEETTTT! I’m gonna be rockin’ those halls during physical therapy…those blue-hairs are going to be SO jealous of my bling.

So, I guess that’s all for now. I know I say this every time, but I really will try to not wait 3 months before I write again! I’ll try to update on my recovery, however I don’t think ‘sitting’ is going to be a very comfortable position for awhile (and the whole stairs thing probably won’t be happening for awhile either), so unless someone wants to buy me an iPad or something I can type on in bed, it’ll probably be a few weeks at least before I venture downstairs to the computer.

Keep your eyes open for pictures of my rockin’ walker…I’m telling you…it’s gonna be amazing. :o)

September 16, 2011

Well I'm about a week and a half post-op and I'm doing really well. I'm not gonna lie...it was pretty rough at the beginning, but just like with most things, it has gotten better with time. I've been trying really hard to be a good patient and stay in bed and not do much, and I've done "pretty good"... :o). Now that I'm starting to feel a little better, I get bored...and that's where the problems begin, lol!

It's been really weird to look down and see tiny little baby boobies...kinda makes me feel pre-pubescent again! I will go back to the doctor on Monday and hopefully get my drains out and get my first of six fills. I had my first post-op visit this past Monday and he said everything looked great!

The scar across my back is a lot bigger and lower than i thought it would be, which is a bit disappointing; however my boobs look amazing so it makes up for it! Most of the photos I've seen of a flap transplant have been very "fake" looking. The flap tends to be a different color and texture than the surrounding breast skin and the placement is usually really awkward. Dr. McClung placed my flap at the bottom of my breast so as it fills and expands the lower part of the scar will be under my boob and the upper part should be right across the center so my new nipple will cover the majority of it up. And since I've always been the whitest person on the planet, the color match is great! On my left breast, it's just a simple line that goes across the center. I obviously still have my original mastectomy scar non the right side and my port scar on the left, but they are fading really well and I believe that over time they will just be faint white lines.

My next obstacle is to get my big ole butt to the gym and start working out! Uuuuggggggggg! I HATE to exercise. No really....like I'd rather give myself a bikini wax with nothing but dull tweezers than work out! So needless to say, this is going to be difficult for me. There's a place in overland park called "turning point" which has all kinds of classes, seminars, get governess, etc. for cancer survivors and their friends/family which I think I might check out. They offer Zumba and pilots, to name a few, that are free to do so I think I'll probably start with that. All this "recovering" I've been doing has made me gain like 20 lbs. and I'm definitely NOT ok with that!

Well the next week will probably be pretty uneventful, but I will post another update once I'm back from the "Women Rock for the Cure" retreat which I am REALLY looking forward too! Oh I almost forgot to mention radiation...it's going well. I get a little tired, but other than that, no significant side effects to mention. Hopefully I'll be done next week, but I may have to finish up with a few more once I'm back from the retreat.

September 6, 2011

Radiation is going good...I'm about a week in and I haven't really had any side effects too bad. Dr. Burt said that since I'm only getting 18 treatments I really shouldn't have too bad of a time. Really, just being tired will be about it. I'll get a break today since I'm having surgery, but they'll start back up again tomorrow...she said they'll just wheel me down in my hospital bed, lol!

Sadie had her surgery about a month ago and she's doing really well. It's nice to FINALLY have something where I know what to expect...although I wish it wouldn't have been her who had to go thru it. She's been a super-trooper though! I'll be in the hospital for 2 days and then I'll be home recovering for 9 weeks before I go back to work. I'll go in once a week for 6 weeks to get my tissue expanders filled and then they will just sit for 6 weeks before I go back in to have the permanent implants put in. I'm not sure what the recovery will be like for the latissimus dorsi flap on my back (where they are "borrowing" the skin, tissue and muscle to build my new boob), but hopefully it won't be too bad. Nothing like not being able to sleep on your front OR your back...maybe I'll learn to sleep standing up! :o)

So on a happy note...for those of you who haven't heard, I've been accepted to go to the 'Women Rock for the Cure' young survivors retreat! It's a weekend long retreat in Nashville, TN where you get a chance to relax, get pampered, meet other young survivors, go to seminars/speakers all in a gorgeous mansion set in the mountains. Ohh...and it's all expenses paid! That is Sept. 23 - 25, so I'll only be 16 days post-op, but my doctor said I'd be OK to fly. I'll have to wear some beautiful and highly trendy compression sleeves, however I think it'll totally be worth it!

Well, I'm off to my surgery...if anyone wants to come sing 'Happy Birthday' to me in the hospital tomorrow (preferably while wearing cone head birthday hats, hee, hee) I'm totally up for that! :o)

August 3, 2011

Well, I got my test results back yesterday and unfortunately it's not good news. The spot they found on my pelvis (or acetabulum - pronounced ass-uh-tab-u-lum - to be exact, my new word of the day) ended up being positive for cancer. It's not a new cancer, its a metastasis from my original breast cancer, which means it's now considered "stage 4 metastatic breast cancer" which is just a real fancy way of saying "your boob cancer traveled to your butt"!


The bad news is, once cancer metastasizes it doesn't typically stop or go away; it just keeps moving around your body from place to place. The good news is, that at this point, my doctor thinks that its manageable. My tumor is in a location that isn't adjacent to anything terribly important, so they can radiate it without any problems. I will start radiation next week and I'll have apx. 15 treatments.


We're still waiting on the pathology to come back to tell us whether or not this tumor is ER/PR+ like my original one was, and in this case, we are really praying that it is. If it's positive, then that means that it's very hormone sensitive, and since I now don't have any hormone parts left (I had my hysterectomy a few weeks ago), then that means there's nothing in my body left to feed it. It's a very aggressive tumor, just like my original one, with a metabolic rate of 19. "Normal" cells in your body metabolize at a rate of 1, and cells that are hurt (like if you have a break or an infection, etc.) typically will metabolize at a rate of 3 - 4. Anything higher than that will typically come back to be a cancer cell and the higher the number gets, the more aggressive that cancer is.


So basically, from here on out I will never be "cancer free" but I could definitely be "tumor free". I will be on a very aggressive maintenance plan where I will get PET and/or CT scans every 3 - 6 months to look for new tumors. If one or more is found, then they will treat accordingly (with radiation, chemo, etc.). Since the cancer has now spread to my bones I will be at a much greater risk for bone loss and deterioration, so I will also have to get a monthly shot of Zometa to help counteract that. Finally, I will be taking a daily does of an aromatase inhibitor to make sure absolutely no estrogen is produced in my body. Even though I'm not able to produce it directly (since I don't have my ovaries), I still have aromatase in my body which will convert other hormones in my body into estrogen - hence the aromatase inhibitor.


I'm not gonna lie, the side-effects of all these drugs are pretty nasty and they really suck. In addition I'm always going to wonder "when is the next tumor going to pop up and where will it be". I'm going to have to retrain my brain in how I live my life. I have to learn how to monitor my symptoms and keep my doctors well-informed of any changes in my body, but at the same time, not let it control my life.


I hate that it has come to this, and I want to scream and yell and hit things, but at the same time I feel incredibly lucky that I'm still alive. There are so many people out there, including my dad, who are taken way too soon without being given the opportunity to at least try and fight! I consider myself blessed that I have the option to battle this ugly disease and that I wasn't just handed a death sentence without any chance of fighting. So while I'm sure I'll have my down-days and my "why me" moments, I'm truly very thankful to be alive and to be given high hopes of several years of continued life! Everyday with my beautiful baby boy is a blessing that I will NEVER take for granted. I cherish every moment that I have with him, and all of my friends and family. Through this entire journey I've learned to see the good in people instead of focusing on the bad. I've learned to not sweat the small stuff and to not underestimate the power of prayer. I pray every night for my continued strength and healing and that my tumors will be few and far between (or God willing, no more at all)! Dr. Burt said that it's not the norm to have a patient with metastasis just stop having tumors develop and she doesn't want to give me false hope by saying there's a chance, but she also said that if there was ever going to be an exception to the rule, that I would be it! So that's my goal...to try to be that exception!


Oh - and since it kind of got lost in the drama of everything else that's unfolded the last few days, a quick update on my hysterectomy. Everything went well. I was only in the hospital overnight and then I came home. I wasn't a huge fan of the pain med's they gave me - didn't seem to work as well as the ones from my past surgeries - but I survived! :o)  At this point, my biggest obstacle is to slow down. I'm not very good at just laying around and letting other people do all the work, and that's exactly what I need to do. I had to go to the doctor yesterday and get my internal incision cauterized (yeah, that felt good) because I opened up the stitches a little. So, I just have to now convince myself that the world will NOT come to a screeching hault if the dishes and laundry don't get done right this second! :o)

July 19, 2011

This blog post comes to you from my hospital room at Overland Park Regional Medical Center. I checked in at 5:30 this morning for an emergency hysterectomy. I've been taking the Tamoxafin for about 6 weeks (thats the estrogen-blocker to stop my hormone production and put me into menopause). Dr. Burt had warned me that the side effects would be pretty bad, and I had myself all psyched up and ready, but I haven't had any side effects at all (only thing is that I'm having mini-periods every few weeks). I was thinking I was just really lucky, but I went to see Dr. Mirabile (OBGYN) just to be safe. Well he was concerned that maybe my body is fighting the Tamoxafin so he took a biopsy of my ovary to test my hormone levels. Well, a "normal" woman's estrogen levels are typically 100 - 400, depending on her cycle and a woman on Tamoxafin typically has levels between 10 - 50. With my cancer being as hormone sensitive as it is, they want my numbers to be around 15. Well, they aren't...they are 700. Basically my ovaries are over-achievers! Dang show-offs! :-) So long story short, they had to hurry up and take everything out so that my body can't produce estrogen anymore.

The surgery went pretty well...they were able to do it laprascopically with one small incision in my belly button, so my recovery should be much easier! They found a cyst on one of my ovaries, but it was benign and they were able to get rid of it without any problems. I'm pretty sore and swollen, but hopefully it will get better in a few days. I'll be in the hospital over night, and they'll ship me home tomorrow!

I had a PET scan done on Friday just to make sure I didn't have any cancer cells develop with all the craziness that's been going on, and unfortunately they found a spot on my pelvis that's cause for concern. I'll have to have a biopsy of my bone done later this week to determine if it's cancer or not, so I'm soliciting everyone for prayers, prayers, prayers! If it turns out that my cancer is back then they will start me immediately on radiation. It's a different kind than what they did last time, this one would be with a machine called Cyberknife. Since it's just one localized area, this machine can pinpoint it exactly and they zap it with a very high dose of radiation. Dr. Burt said that more chemo could possibly be on the table after that, but that we will just wait and see how everything turns out.

So for now it's just more waiting...

April 7, 2011

Well I'm ALMOST DONE with radiation! Today is my last "normal" treatment and then I've got 5 more "boost" treatments. The only difference is the boost treatment is only my scar and about an inch all the way around it as opposed to the entire chest, neck and upper back section they are doing now. They had to make a cast plate (just a big steel plate that they put in the radiation field so it blocks all the radiation except for my scar area) and they will have to line it up to me each time. So being as they are super high tech and all, I was quite surprised at the technique they will be using to line it up. They took a Sharpie (or kokie pen if you're Mike Schermoly) and drew a big kidney bean shaped outline around my scar! And every day they look at it and touch it up where needed...seriously! lol! I told they girls that if they were going to mark me up they better at least make it pretty! I've had blue and brown so far and I'm hoping for pink today! :o) The girl who did brown totally got fired from coloring duty...seriously, who paints with BROWN?! She tried to tell me it was "natural" and "earth tone"...like I said, she got fired.

The treatments really haven't been too bad...nothing like what I expected. I've got small little heat blisters all over my skin, and I'm really red (like a bad sunburn) and itchy. Just a few days ago I started getting the "phantom itch" and that has probably been the worst part. I get this super strong deep itch along the end of my scar (under my armpit) but since the skin is numb there when I scratch it I can't feel anything...so the itch never goes away! It's terrible! It's like when you are cooking and you have food all over your hands and then your nose starts to itch. I swear it's one of God's little pranks! :o)

I have been able to work all the way thru my treatments up until late last week. It just got to where I couldn't wear a bra anymore (because the pressure against the raw area got really painful) and I really didn't think anyone at work wanted to see me in all my shining glory, lol! :o)  Also, I get really tired...after about an hour of activity (even light activity) I feel like I need a nap, so that obviously wasn't working out too well with a work schedule. I'll be off for a few weeks and then I'll be back at it until my surgery.

Oh...and I almost forgot my exciting news...the horrible purple bumpy dinosaur is FINALLY gone!! Yippee!! For those of you who haven't read my previous posts (shame on you) the purple bumpy dinosaur is what I oh so lovingly named my port. I had it removed last week and I go this afternoon to get my stitches out.

My eyebrows and eyelashes have grown back (although my eyelashes aren't as long as they used to be...I'm hoping they are still growing) and my hair is coming back too. It's about as long as it was when I first shaved it before chemo, however it's not near as thick. BUT...it's a process, and I'm happy that I at least don't look like a bowling ball anymore! :o) 

February 28, 2011

Things have been super busy the last month, but overall pretty uneventful with cancer-related stuff (which I guess is a good thing)! I had to have my drain site (from my surgery) looked at because I was having some pain, and they initially thought there might be some residual cancer cells leftover that were starting to grow again, but after what seemed like a 2 hour sonogram, they decided it was just some swelling and scar tissue that's causing the pain. Dr. Balanoff said that as it heals and the swelling goes down, the pain will subside too. Basically - shut up and suck it up! :o)

I went last week to get my radiation placement tattoos (I've got three little dots) and I will have my first of 33(ish) treatments starting today. I'll go every day for 6 weeks and then I'll have a 6 month(ish) break until my next surgeries! The main side effects of the radiation are being really tired and then sunburn-type reactions...redness, peeling, blistering, etc. Hopefully it won't be too bad, but since I'm so fair-skinned I'm expecting the worse. I may have to join a nudest colony or something though - cuz if it hurts to wear a shirt don't think my happy-self won't be walking around the house topless! Speaking of which...please be sure to call before you come over for unannounced visits. Ha, ha! :o)

January 23, 2011

Thanks to everyone for the sweet comments on the photo from my last post. I don't want to complain b/c I definitely consider myself lucky that I don't have an egg head or some weird growth on the top of my scalp or anything, but I am soooooo ready for my hair to start growing back! Jeremy makes fun of me b/c everytime I see a cute, short hair style I take a picture of it on my phone...so I've got my own collection of hairdo's! ;o) Ohh, and speaking of the photo, Reece won in his competion, so CONGRATS to him!! He now gets to move on to the district level, so I'm still keeping my fingers crossed.

I get my LAST chemo on Thursday so hopefully it will be quick and easy. I made some lemon and red velvet truffles for the nurses/doctors to celebrate...ohh and if they decide that I don't have to do my last shot that will be pretty awesome too. No one ever said I was above bribery! :o)

Jeremy's mom is also going in on Thursday to have the genetic testing done. Her and her mother both had breast cancer, so Dr. Burt thought it would be a good idea for her to have the test done and make sure Jeremy isn't at a hightened risk (as well as Alex - that would mean he had it on both sides). It'll be about 3 weeks before they have any results, but keep us in your prayers that everything comes back negative.

Sadie and I went and met with the plastic surgeon last week and we both really liked him. He's not much of a social butterfly, but he's very good at what he does and at the end of the day that's what really matters. His nurse (who is somewhere in her 60's and looks like she's maybe 35) was super nice! She's the most adorable thing ever and she answered all our questions and showed us what the implants looked like. I'll wait about 6 months after radiation (to let my skin heal) before I start the surgeries so I'll start around August - September and should be completely done by November-ish.

I guess that's about all for now...everyone have a great Monday!

January 6, 2011

My first post of the new year! Whoo hoo! :o)

Christmas was a whirl-wind and one that left a trail of Toys R Us all throughout my living room, lol! Alex has a great time opening presents and playing Santa so it really made the holidays a joy. But, as with most good things, they must come to an end and shortly after Christmas I had to go back for another round of chemo.

This one was a little worse than the first...mostly physical pain though, not so much any problems with nausea. As I said in my last post, this type of chemo tends to aggravate my bones, muscles, nerves, etc. instead of the typical nausea that you most hear about. I had been pretty excited because my hair was starting to come back in, but its starting to fall out now, so that was short-lived! Oh well, at least I know that my hair follicles still now how to grow! :o) 

Not really anything too exciting to report...pretty much same 'ole, same 'ole. I think as long as I can get through these last two rounds of chemo I will start to see the light at the end of the tunnel. I'm still not sure whether radiation or surgery will come next, but either way I think they will be better than this and I'll be on the road to recovery...whooo hooo!

On a fun note - the son of a family friend (I believe he's in 4th grade) is participating in a PTA Photography Contest where they give the kids a theme (this year's is "Together We Can") and they shoot a photo that they think represents that theme. They submit the photo and a brief explanation of why they chose it and they get judged. Anyway, Reese took a photo of my son Alex and I and went with the idea of "together we can beat cancer" (which I thought was absolutely adorable). I've attached the photo below...I think he did an excellent job and I'm proud to be his inspiration! I wish him the best and I'll let you all know if he places in the contest!