PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Wednesday, August 31, 2011

Negative is the new positive

I know I've been posting more frequently lately, but seeing as how I'm in the middle of recovery from another surgery, I have a lot to talk about it! (Ok,ok, ok I know I always seem to have a lot to talk about it, but that's not what I meant). And as I've said before, I enjoy writing!

I've managed to keep on acting somewhat normal as anyone can who still has one drain and wears extremely baggy t-shirts to hide it! My PS had said that she wanted to have the drain out at the two week mark (which was today). However, my output last night was 70 ccs. AHHH!!! She wants it to fall to 20-30 ccs before she pulls it. I called her today, half hoping that she'd have pity on me and go ahead and pull it but she says she wants to wait until it falls to 30 for a few days. She started laughing and said "It's going to happen over the holiday weekend I bet" I think I laughed to keep from crying. I start school a week from today and would REALLY REALLY like to have the drain out by then. (Fingers crossed/praying/will light a candle next time I'm at church/is there a patron saint for JP drain patients? if there is I'd pray to them too!). I was all excited about my nice long weekend from work, but now I'll have to deal with this dumb drain. We are going to the Train concert at the casinos on it looks like I'll have to figure out a way to hide the drain, wear my fake boob, and look halfway decent. The things I do for good music and the Paula Deen buffet :)

Well, a few weeks ago I'd made reference to having the test done for the BRCA gene mutation. I really wanted to make sure that I wasn't in a high risk category for ovarian cancer as well. And YAY I'm NEGATIVE!!! WOOHOO!! That is fantastic..I know I still have Cowden's so I'm still part of the mutant club. But now I can keep my ovaries, so there's no rush to have kids! Because, yes if I'd been positive for BRCA and had a higher risk for ovarian cancer, I would have had my ovaries removed prophlaytically as well. Would seem almost a double standard to remove the boobs but not the ovaries. So, I definitely feel like a weight has been lifted.

So now I'll just sit back, relax, and try to enjoy this last week before school starts. I'm undecided on whether or not to go to church this Sunday with my drain. It's just so hard to find clothes AND have to worry about knocking into something or accidentally pulling it out (My doctor would probably think I purposely yanked it out). And if I have to go to school with the drain for a few days then that's what I have to do. I wonder if I can get extra credit for having the drain? Kind of like a walking A&P project?

The PS did say that she'd fill the TE 100-150ccs the same day she pulled the drain. She said that that way, it would be less of an extra space for the fluid to build up that hadn't been drained out. Then I'll truly be lopsided!

All I have to say is that if my drain isn't out in a week, I may hang myself by the tubing.

Sunday, August 28, 2011

No end in sight

Despite all of the surgeries I've had in my life, I've always prided myself on remaining relatively healthy. I don't get "sick" too often. I have good blood pressure, good lungs, good pulse etc etc. I've always tolerated anthesia very well and never have been allergic to anything.

By the middle of the week, I was feeling pretty good. Even though my one remaining drain seemed to flow ceaselessly, I wasn't in too much pain. I really only took muscle relaxers at night when  I couldn't get comfortable. On Wednesday, when I sat down to work, I noticed my wrist was itching like crazy. I looked down and saw a red welt on it. I called Mike in there and asked him if it looked like a spider bite. He said no, but maybe it was another bug bite and he said he'd get me some alochol the next time he went out to the store.

I started working and in about an hour I realized my knee was itching the same way my wrist had been itching. On my break, I ran into the bathroom and saw a big red welt on my knee, identical to the one on my wrist. WHAT?! My mind started racing, and I wondered if this was yet another side effect from my meds. I quickly googled my antiobiotic and saw that a skin rash was indeed a side effect. Just to be on the safe side I called my pharmacist and asked if it was a side effect and not an allergic reaction. He said it could be either, but that I should call my doctor to be on the safe side. By that time, I had red welts on my feet and it was getting painful to walk. I called my PS and spoke to the nurse. I explained what was going on and she said she'd called my PS and see if she could call in another antibiotic for me. I went back to work, and realized that I was now itching all over. I tried to ignore it and continue working.

I got a message from my PS saying that she had called me in another antibiotic and it would be $35 (yippee...I might not get breast cancer but I may end up in the poor house) By the time I went on my lunch break,  I was in agony. I didn't know the extent of my hives, mainly because I was scared to look.  My feet and hands were swollen and not only was I itching, I was also in pain. I literally just wanted to curl up and die. Mike told me to take a shower and that might make me feel better. I took a shower and staggered back to my computer to continue working. My sweet boyfriend went to the store to pick me up some benadryl and hydrocortisone cream while I was trying to work. About an hour went by, and my hands were so sore and swollen that I knew I couldn't go on. I called my work and told them what was going on and that there was no way I could continue the other two hours I was scheduled to work. Before I changed into my pjs I started to put on my hydrocortisone cream. I hadn't seen the extent of my hives yet..they were EVERYWHERE. I was miserable.  I popped two benadryl and went to bed (this was at 7:30).

When  I got up the next morning I felt a little better, but when I went into the bathroom I saw that the rash was just as bad. I fixed myself breakfast, took another benadryl and went back to bed. I got up right before I was scheduled to work and after work I went right back to bed. I was not a happy camper by any means.

Friday morning, I woke up and hesistantly looked in the mirror. The rash was better! But wait...I took a closer look at myself and realized that instead of my lips, I looked like I had two cigars on my face. OH MY GOSH. I was a poster child for a botched Botox injection. I ate breakfast, took two benadryl and went back to bed, wondering why God was apparently mad at me and what leprosy looked like. I texted Mike that my lips were swollen and I was going back to bed. When Mike came home from the gym he took one look at me and said "Do I need to take you to the hospital?" I assured him that no, I knew the symptoms of anaphalyxis and I'd let him know if I started going into shock.When I woke up, my lips had almost gone back to their normal size and my rash was getting better. YAY! I worked that night with really no problem and took two benadryl before bed to be on the safe side. I looked in the mirror and saw while my lips had gone down to their normal size my cheeks looked like a chipmunks. Will this ever end?

I was feeling good, and most of the time I managed to forget about the drain I still had in (which was starting to feel like an extra appendage, and just part of me). I told Mike I would run up to the grocery store since the doctor had just said not to drive while I was on pain meds. I checked with some FORCE ladies (LOVE that website!) and they agreed that as long as I was careful, driving with a drain would be ok. I hastily threw on a wrinkled button down shirt (I don't even own an iron, and three tries in the dryer weren't getting the wrinkles out) and some stretchy pants and quickly applied make up (So I wouldn't look like a complete beast). I didn't think it'd be wise to try to fit a cami over the drains, or even my wireless bra so my fake boob was out. Oh well...if someone said something about my only having one boob I'd shut them up by saying that I'd had a mastectomy and making them feel bad. I ran into Kroger thinking I wanted to get in and out as quickly as possible. Of course, I passed a frantic looking mothing whose box of Capri Sun's fell out of the bottom of her cart. Normally, I would've helped her, but I knew I couldn't/shouldn't lift it. I kept my head down and practically ran past her, saying a Hail Mary silently for not stopping to help and wondering if this would need to be brought up in confession when I finally got to go. I kept my head down and hurried down the aisles, really not having anytime of list or knowledge of what we actually needed. I just knew I didn't want to carry too much out of the store by myself. I rounded a corner and lo and behold there was someone I knew. CRAP. She spotted me so it was too late to duck and cover. I plastered a smile on my face and managed some polite conversation for a few seconds. (If you're reading this, I really wasn't trying to get rid of you...I really wasn't in any position to see someone I knew). As I hurried away, I thought I could hear God laughing....

Last night, I had trouble sleeping because my arms and legs ACHED from all of the hives and havoc reaked on them in the past week. I managed to toss and turn fitfully until finally falling into a deep sleep around 3 AM. I woke up around 8 AM this morning, and vowed not to take a nap so I'd sleep well tonight.

Now I'm just praying that my drain comes out this week! School starts next week and if I have to go to school with one boob and a drain...well let's just say I should definitely rack up some major karma points for that one!

I also have a nice little 3 1/2 day weekend (I say 3 1/2 because I'm off Fri-Sun and only have to work 8-9:30 pm Monday night...thank you Sedgwick!) and would prefer to spend it without my 3rd arm.

My scars healing dermabond started to flake off in the area where I had the most problems last time. I almost had a heart attack but when I saw a nice pink scar underneath I breathed a sigh of relief. I do have a "knuckle" on the right side like I had on the left. The doctor didn't act like it was a big deal before so I don't think it'll be a big deal now. She did say she wanted to wait 2 weeks to start fills to let everything heal completely..which is ok by me. I know the skin is pretty tight on that side, so I'm perfectly ok with going as slow as possible!

Fingers crossed that I get my drain out by Wednesday! =)

Sunday, August 21, 2011

Side Effects

Well everything pain wise has been going ok. That's not to say that I'm not IN pain but it's very manageable. Kind of feels like I did 100 chest presses with a lot more weight than I'm used to. I managed to get through today with only a lortab in the early morning and regular ibuprofen during the day. I went back to work today...since I work from home so no one minds that I'm in my pjs and have on no make up and two drains hanging out.

I've always said that I wouldn't be posting pictures of myself and my "work in progress" boulder boobs (I can't even call them foobs yet). HOWEVER, I got to thinking about it and realized that part of the reason for this blog is to help other women who are going through this. So if you'd like to see a picture of my scars, drains and all just shoot me an email at: I will not however be sending topless pictures to people I know so don't even try :)

Currently I'm on Lortab 7.5, Robaxin (a muscle relaxer), and Spectra (an antibiotic). I get side effects from every medicine I take...especially antibiotics. So yes, that means even though I'm not in pain per se, I have a headache, my throat is dry and scratchy (I don't know whether or not to blame that on the meds, or the tube down my throat during surgery), I'm sick to my stomach and I'm dry coughing to boot (and that makes me scar hurt everytime I cough). And I've got the one side effect of pain meds that makes grown people shiver in fear. I won't  go into details..but let's just say things aren't moving quite like they should yet.

Now I know not everyone will get these side effects. I'm just one of the lucky ones I suppose. Hopefully, things will get better soon! I'm seeing Dr. Cooper tomorrow and getting my one drain pulled. My other drain is still putting out so much I'm beginning to wonder if it's healthy to lose this much fluid.

On a positive thing this experience has shown me (really reminded me) is how much I do love to write. I've always loved to write, ever since I was in grade school. My grandmother had family newsletters I wrote when I was younger, and I was constantly writing plays and short stories. I would love to write more. Now the question is, do I have enough real talent? Hmm... I did put in an application to be a write for The Fight Like a Girl Club. We'll see if I make it! I don't want to give up nursing school to be a writer..Lord knows I'd be mad at me if I'd been through this much of nursing school to quit! More of a hobby would be nice. Like I said, we'll see how everything pans out.

Since I've officially been off for 7 minutes, I'm headed to take a shower, empty my drains, medicate myself and fall into a coma...umm deep sleep. =)


Friday, August 19, 2011

Second Time Around

Well four months later, here I sit In the recliner in my button up pajamas and drain belt with my two drains with I Love Lucy playing in the background. I feel like I never left.

That being said, Im in a lot less pain and have better range of motion. I can brush my hair by myself! Those are all pluses in my book :)

Wednesday morning, on the way to the hospital, it started raining....storming is better word. When we walked down the hall to the same day surgery area, the lights started flickering. When I went to check in, I nervously asked the receptionist if the OR had a back up generator. She assured me it did. I went back and got dressed in my gown and babbled nervously until it was time to go back. Oh and there was a little girl down the hall who had literally screamed the entire hour and a half we were back there. When i said something to my nurse about it (not complaining just more nervous babbling) her reply was "She just got earwax removed from her ears its not that big of a deal." geez....

I didnt have to wait very long until it was my turn in the OR (unlike last time) but it was funny because they had to get my PS to sign the consent form, since it still said the lat flap and i wasnt doing that anymore.

When i woke up, i realized that i wasnt in too mich pain, but my throat was SO scratchy! I got up to the room, and got some more pain meds. I managed to sleep for awhile and then actually sleep pretty well throughout the night. I was at home by 1:00 pm the next day.

Im scheduled to see Dr Cooper on Monday for my post op followup appointment. I know ill get at least one drain out, since its only putting out 10 ccs a day. The direct opposite of my other one....which doesnt STOP draining. Hopefully itll slow down soon.

The PS filled the right TE with 200ccs during in doesnt resemble a breast in any way looks like a raised flat surface! But i know itll come....eventually.

And God willing, ill be able to ave my exchange by the end of the year!

Tuesday, August 16, 2011

Last Minute Changes

If I close my eyes, I can vividly remember when I sat down to type out my surgery eve blog in April. We had gone to see Scream 4 in the theaters and had dinner at Pei Wei. I ran to Wal-mart for a last minute run, and after I ran around trying to get everything packed and settled for the hospital I sat down at the kitchen table to write. I was not really scared..well I was but more of the unknown then of the actual surgery itself (You know you've had alot of surgeries when the nurses don't even go over the risks of anthesia with you..they just say "Oh you already know all of this.")  I guess now I'm more apprehensive of the end result then the surgery itself. I know pretty much what recovery will be like. As I touched on in my last post, I don't want to be weak and reliant on other people again. I HATE that!

Well I went into my PS appointment today to be marked for surgery. She said she'd decided after thinking long and hard and talking with her partners that a TE only would be the way to go. YAY! So no lat flap- just a tissue expander placement. I'm excited because that means they'll be more equal in every way.

Well this is a short post- lots to do before I turn in. I have to pack my bag..and it's 11:05...I MUST eat again ;)

Sunday, August 14, 2011

Life's not fair

I'm definitely in a funk. I feel very unreasonable, like I just want to pout. I'm not really in the mood to be reasoned with or talked to. Or even agreed with... I'd prefer someone not to talk to me about this at all. I undrerstand that me writing a blog on the subject that I'm in no mood to be talked to about is counterproductive but I don't care. SEE??? THAT'S the mood I'm in. Completely illogical and irrational...

According to my counter I have 2 days and some hours until my next surgery. I feel like at this point in April, I was definitely preparing myself. I was ready to face things head on...I didn't know what to expect, but I felt like I could take on anything that was thrown at me.

Oh, and there was plenty thrown at me! I needed several more hands to catch it fact I wanted to throw some of it back. I won't rehash everything that's transpired since April..if you've read past blogs or kept up with me in any way than you'll know (and if you haven't, feel free to read past blogs!) But somehow, I prevailed. I didn't let any of that stuff get me down and I managed to be semi-normal over these past few months. I started a new job, got my hair done (courtesy of Ms. wonderful hair stylist at Tangles...shameless plug hehe), spent more time in the gym, saw movies, etc etc. I lived! I saw my PS a few times, but that was ok. Instead of rushing in with no makeup, hair in a ponytail, glasses, and too big button down shirts and workout pants with flip flops, with my drains hanging out, I bounced in with my hair done, makeup, and decent clothes. I no longer spent at least 20 minutes a day, looking at my new body in the mirror obsessively. I didn't obsess over every little change with my stubborn right side. When I had first had my expander removed, the doctor told me that it would be extremely hard to the touch...and it was like a brick wall! She told me it would soften up, and once it was softened all of the way up it would be ready to be operated on again. Imagine my shock when I looked down one day and saw it all soft again...I hadn't even noticed! I say all that to say this- I'd gotten back to some sembalance of normal. Even though my wardrobe choices were limited and I can't lay on my side for very can forget laying on my stomach at all. I did make some goofy wardrobe choices...circa a 9 month pregnant Rachel on Friends coming out in a halter top and stubbornly asking everyone "What does it not look ok?"

I think about all of I enjoy my life now and I realize that in 2 measly little days I'll have to START ALL OVER?!? That I'll once again be dependant on the kindess of strangers (Well really Mike and my family), have to deal with not 1, not 2 BUT THREE drains, take at least 30 minutes to take a shower, 5 of which include actually being in the shower the rest is just prep time, not really being able to actually fix my hair so it's thrown to a crap ponytail until my mom feels sorry for me enough to fix it for me, looking like death...and probably smelling like it too because my arm is too tired to lift itself up enough to put on deoderant. Taking my pain meds like clockwork, because the one time I tried to skip a dose I ended up in so much pain I wanted to claw my eyeballs out. Do I sound bitter?

Let me clarify...the recovery from the surgery isn't really that bad. It's no walk in the park, but it beats having cancer and going through chemo..and oh yeah the recovery won't KILL YOU. But this is where I start to whine...I've paid my dues. I've gone through the crap and I shoukl, in a perfect world, be getting readt for my implant exchange surgery so I could happily start this semester of school with new foobs. Instead, I'll barely have my drains out and I'll be thrown back into school. Which means I'll have to deal with fills as well as studying. But then again,  I guess in a perfect world I wouldn't have had to have the %&^* surgery in the first place.

I'm complaining now, but I know my personality. I'll bounce into my PS's office Tuesday to get marked and then bounce in the OR suite Wednesday morning, full of "Yes ma'am"s and "No sirs" and "please" and "Thank you." If they have trouble starting an IV or taking blood I'll apologize profusely like it's my fault that my veins roll. You see, ever since I was little I was taught to be polite to doctors and treat them with respect. You really are a product of your upbringing,,,which is a scary thought. That's a completely different blog topic that I'm not touching right now.

For the next two days, I'll go to the gym, play with my dogs, and play with my niece. I'll try to stock up at the grocery store and try to push my surgery out of my head. Do I dare hope it'll be smooth sailing from here after this operation? That I'll soon be back to bouncing into places and getting fills and before I know it, it'll be time for my exchange?

Only time will tell....

Friday, August 12, 2011

Testing, 1,2,3

As I've said before I made my decision to have a PBM based on a genectic mutation called "Cowden's Syndrome" which is a mutation of the P-10 gene (the tumor suppressor gene). I've always known about BRCA 1 and 2 but just thought that like every other thing in my life I was in the lower percentage of people who had different genectic mutations. I never really gave it a second thought...Cowden's was enough to deal with!

Recently, my biological mother passed away from breast cancer. I had been told that she had "the breast cancer gene" which made something click in my mind. Could I possibly have the BRCA mutation as well as  Cowden's? My first thought was, "Would God do that??? Would God give me two genectic mutations???" I timidly broached the subject with my BS during my pre-op consult. He said that it was possible that she was referring to the BRCA gene, but I shouldn't worry about being tested since I was having a mastectomy based on the Cowden's syndrome. He said I should wait until everything passed over and  THEN worry about getting tested.

I had tried to put it out of my mind as best as I could. It was always there, lurking in the farthest corner of my thoughts though. Could I be a BRCA carrier as well? I also knew that there was an ovarian cancer risk associated with one of the BRCA mutations. Since I'm only 27, I do not want to have my ovaries removed yet, but if I had a higher risk I wanted to know about it. I knew that ovarian cancer was a hard disease to catch in the early stages, but that there was a blood test that could be done to kind of watch certain levels in your blood.  I didn't really know too much about it though, mainly because all I could (still) think about was BOOBS!

My yearly dreaded trip to the OBGYN was due and I finally decided to make an appointment for today, so I could get it out of the way before my surgery Wednesday. When I got there, they handed me some forms to fill out and also an extra pink sheet. The receptionist explained that it was a questionaire that they had added for all patients. I looked down and saw it was a history of breast cancer, ovarian cancer and colon cancer in your family. I looked harder and saw that they had started offering the BRCA test to their patients. I sighed as the thought "Well, there goes my excuse that I don't have anywhere to go get tested:"

When they called me back to the exam room, the nurse brought up the subject of testing to me. I had already explained that I had my PBM in April and told her of my possible BRCA inheritance. She said just to bring it up to the doctor. When the doctor walked in, after I gleefully said "You don't get to feel me up this time!" then after he looked at me with surprise I explained about the mastectomy, I asked about the testing. I told him while I didn't want to remove my ovaries at this time, it'd be nice to know if I have an added risk. I also wanted to know every joyful thing I could pass on to my hypothetical kids (there are those hypothetical kids again). He said that we could do the blood draw in the office today and get the results back in a week.

So, here I am, waiting for my surgery date and waiting for my test results. I don't feel like I'm an emotional wreck about the test results like I know some people are. I guess it's since I've already made my decisions, carried them out, and am now just waiting on my life to get back to normal. I just want to KNOW. Because as cheesy as it sounds...the saying is true "Knowledge is power!" or at least in this case, ignorance certainly isn't bliss.

Saturday, August 6, 2011

Out with the old, in with the new....

I realized earlier tonight that this is the first time since I've started this blog that I've gone more than a week without writing a new entry. I used to look at people's blogs who would go 2-3 weeks between updates and think "Wow, I hope I get to the point where I don't NEED to update all of the time.." Am I there?? I honestly don't know yet.

I went to the doctor this past week to have a "secondary pre-op consult." I'm READY to get this surgery OVER WITH! According to my counter, I have 10 days. I've gotten the time off from work approved and am ready to go. Just need to get my pre-op blood work done this week. One weird thing- they haven't gotten the approval letter from my insurance company yet. Since I've swtitched jobs, I do have new insurance HOWEVER I've paid for COBRA for this very reason. The people in the doctor's office said there shouldn't be any problem so I'm going to try not to let it stress me. I told them that I'd just proceed like everything was ok until I heard otherwise from them.

I don't remember if I made reference to it or not, but one of things that I did for myself before surgery was to have boudoir pictures taken. Now, this was a semi-difficult thing for me to do. I've always had some body images issues so the idea of parading around shirtless and again in lingerie wasn't a thought that was incredibly appealing to me. However, I knew that I wanted to capture the way that I was naturally. And I wanted it better than me snapping a pic with my digital camera in  the bathroom. So when a friend of mine recommended this photographer (Made You Look Photography), I went for it. I finally got the finished product today (no ones fault..I just waited awhile to get the pictures) I'm so glad that I did it! They are by far the best pictures that I've ever taken. I've never seen that side of granted I probably won't be parading around the house in lingerie but it definitely has helped me have more confidence!

I've been asked why I felt the need to take pictures...why I'd want to remember something that tried to kill me. It's very hard to explain...but I'll try! I needed to be able to hold onto something from the past. I needed to have something tangible to grasp and look at and say "That's what I used to be"  I didn't want this PBM to erase the person I used to be.

Now, I know there may be people who are thinking ,"You only changed the size of your have you changed that much?" Well,  a PBM..or any mastectomy for that matter, changes you greatly on an emotional level as well. I'd like to think that I've matured a little this past year. I certainly look at things differently and process things differently. Puts things into perspective, I guess. So yes my bra size did change, but my outlook on life changed too. When I stop and think about what I've been through...what I'm going through now...I'm almost surprised at my strength and resilience.

Do I know what the new me will be like? What the finished product will be? I'm not sure yet....stay tuned!

Old Me

New Me??