MDA Camp

Last year I was a counselor at MDA Camp. It was a week long camp, and it was honestly one of the best experiences of my life. The kids were amazing and the counselors and staff were great. Unfortunately, I didn't have the chance to be a counselor this year because they sent the kids to another camp that was 4 1/2 hours away. However, I did get to ride the bus with them to the new camp today! I was so excited to see them all. It was definetely something I needed..it made me put my own situation into perspective. Not going to be a long blog- I'm SOO tired (almost 9 hours in a bus round-trip makes for a LONG day) but I wanted to post a few pictures. Like I said, these kids are amazing and I'm glad to be a part of their summer experience. They help me as much as I help them!

****I TRIED UPLOADING A VIDEO BUT IT WOULDN'T LET ME-I'LL TRY AGAIN LATER!!AND IF IT ACTUALLY ENDS UP WORKING, I'LL ERASE THIS COMMENT :)****

10 (well 5) Things I Hate About my Situation

1. I hate relying on other people. I feel like my life isn't in my own hands anymore. I have to rely on the doctors to make good decisions and be skilled at what they do.. I have to rely on Mike or others to take pity on a poor broke soul and give me money. I can't even go to Starbucks without pleading for the money.

2. I hate the way I feel now. I try to be all cheery and brave but I'm TIRED.. And I want to cry..for no apparent reason. I know your breasts really don't have anything to do with menopause but I swear I've been thrown for a hormonal loop. I get hot flashes and I cry at everything. And I'm very touchy and sensitive and have a lot shorter fuse than normal.

3. I hate that I have yet to become a responsible adult and save money. And yes I intend to start as soon as I get back to working again.

4. I hate that I have to censor what I put on my blog based on how people will react.

5. I hate that I feel like I'm at the end of some people's support and kindness. Like this has been too trying and stressful of a situation for people to handle. I feel like I'm dangerously close to the end of some people's ropes. I hate that, it makes me sad but I don't know what to do. This is such a long and tiring process and I almost don't blame anyone who gets sick of hearing about it and having to watch from the sidelines as I go through it.

Ok so that post sounded pretty angry. I guess I'm just in a weird funk right now. I'm really not as angry as this post makes me sound. It's just that I'm at the point where it'd be real nice to get an unexpected surprise, preferably of the monetary persuasion :)

Decisions, Decisions

I have never been good at making decisions. I literally answer almost every question with "I don't care" or "It's up to you." It takes me forever to figure out what I want to eat for lunch! So, you can only imagine how hard it was to make the decision to have the PBM in the first place. Especially when doctors, Mike, my parents, other family, and my friends all responded to my endless questions and talking about having the surgery with "It's your decision" I have never felt so much pressure in my life. I'm always scared that any decision I make will be the wrong one..and this was definetely something I couldn't undo after I did it!

Once I finally made the decision to have the PBM I had always assumed it would be with TE's to implants. That's the most common way to do it and especially for young women who don't have cancer and are relatively healthy. I never really considered a nipple sparing mastectomy, because I knew if I was going so far as to have risk reducing surgery, I wanted to remove all the risk possible. I figured if I could live with foobs, I could live with fipples! I honestly thought that once I finally made up my mind with this decision to have my PBM that I was done with having to make decisions. I figured I could just lay back and go through the process and really not have to decide anything else.

And two months later, I am hit with two decisions that I have to make. First, I am wavering on my decision about the fipples. Yes, it's far off. I have to be completely done with surgery, expansions, and exchanges. At first, I thought I didn't want them. What's the point? I asked myself! Nipples are good for really two things- foreplay and breast feeding. Those two things are off the table anyway, due to my milk ducts being gone and sensation being lost for the most part. Other than those, nipples really just in the way. So I didn't think I wanted them. HOWEVER after being through this whole process and talking to the doctor today I think I might want them...I need to feel NORMAL. The doctor also said that some people go to a tattoo parlor and instead of getting their areolas tattooed they get something else tattooed to commeorate the occasion. I can't really see myself marching into a local tattoo parlor and asking some fat man with a beard and lots of tattoos to tattoo my foob. Besides the doctor said they use numbing cream, and my experience with tattoo parlors is they just tell you to shut up when you complain that it hurts. I really feel like I want fipples now so I don't have to go through life with barbie boobs. But as much as I change my mind about everything I may change my mind ten times before it actually becomes time to decide!

When I went for my fill today, I was also presented with another decision to make. The doctor has been keeping an eye on my flat right side to see how it was healing. She said it was healing very well, but she still wants to wait three months before the next surgery (that would put me in mid-august). We had orginally talked about the lat flap procedure BUT she said based on how the skin looks now, I may be able to handle another TE placement. However, I will face the risk of having the wound healing issues and infection issues. That doesn't happen all the time with TEs and I,would hope that it wouldn't happen again! The doctor says that with the lat flap is very reliable and won't get infected. But with the lat flap my scar pattern will be different on my right side and I'll have an extra scar on my back, not to mention the pain and discomfort on my back. She took some pictures today and is going to show a partner of hers who has been doing breast recon for 20 some odd years. So I have no clue what I want! The doctor said she'd see what her partner says, and alot of it depends on me and what I want. Unfortunately I do not know. We'll see!!!

I feel like I'm being faced on all sides with decisions and pressures. Everyone says "Pray about it" "Follow your heart" and I'm just really someone wanting to tell me when to show up at the hospital and what's going to be done. I know this much, when this is all over, I'm taking a break from decision making! No more big decisions for awhile!

I'm FAMOUS!

Ok, not really. But, I am featured on the Keep a Breast website about their Treasured Chest program. Check it out!

http://www.keep-a-breast.org/blog/treasured-chest-program-supports-women-who-need-prophylactic-mastectomies-too/

I'd been in touch with the young survivor advocate at the organization and she asked for me to write a few words and for pictures of the whole process. I'm glad to get it out that women who need PBM's can take advantage of this wonderful program!

At a weird place

So I'm feeling pretty good these days. I hardly ever have any pain..just some slight twinges here and there. I'm mainly still feeling it at night..not really pain but alot of discomfort. I take tylenol pm or muscle relaxers at night. Except that one night I drank a few beers before bed- that seemed to relax me just as well :)

I went to the doctor last week and got filled to 850 ccs. That makes me a small C and I'm very happy with the size I am. Next week, I'll go back to the doctor and she'll fill me up another 100ccs to make room for the implant. Then my left side will be left alone until my exchange surgery. The doctor told me to go back to the gym and to do what I was comfortable with. She wants me to keep in shape so I'm in good shape for my next surgery..and being that my latissimus muscle will be used to reconstruct my breast I'm really not anxious for it to turn to fat!

So everything should be great right? WRONG! Everytime I feel like I'm getting back to normal, I happen to take a glance at myself while I'm changing and see my scars and my flat, right side. It's like the fact that I'm still facing two surgeries is always lurking in the corner and I can't be truly happy or complete until it's over. I try very hard to forget about it and put it out of my mind. But, truth of the matter is, I thought I was over having to wait and worry about a big surgery. As I'm sure everyone reading this is aware, things don't always go as you want them too. And the sad reality is that in no time I'll be facing another overnight stay at the hospital, complete with drains and all. **BIG SIGH**

I am trying really hard to stay in shape and eat better too. I've started Weight Watchers again..it seems to be the ONLY thing that works for me. Not only because I'm sure it'll help me recover faster from my next surgery, but because it seems almost pointless to go to such an extreme measure to prevent breast cancer, only  to destroy my health in other ways.

One thing I almost wasn't prepared for is the fact that I have such weird periods of having NO self esteem. I just don't think of myself as an attractive, desirable person right now. I feel like something is missing; that I'm not a whole person. Hopefully, that'll go away after this whole process is over and done with. And once again, I'm honestly not posting this to fish for compliments..I just want to write about everything I'm feeling and thinking during this whole process. 

So, here I sit in this weird place; a limbo of sorts. And I'm stuck here until the doctor decides it's time to move forward with my next surgery. Part of me realizes that this is just a small portion of my life. Even though it seems neverending to me right now; this time next year it'll all be a distant memory.

My History

I know I've made reference to my genetic condition and medical history before in my posts, but I've never really laid out exactly what has happened to me in the past. So, I figured I would take a moment and kind of outline what has happened to me, medically speaking, my whole life. I guess just because I feel like that someone can't really understand my story unless you know all of this. And NO I'm not posting this to make people feel sorry for me, or to tell me how wonderful I am (I hate when people feel sorry for me and I already know how wonderful I am HA). No, seriously I have never thought of myself as deserving of any special attention..I just like to think that everything I've been through will help me be a better nurse one day (provided that I actually graduate and don't implode from stress). So, here's a brief little explanation of everything that's happened to me up until now:

AGE 3-
My grandmother noticed a lump on my side. I had it removed and it was diagnosed as a lipoma, or fatty tumor- completely benign.

AGE 6-
Like a normal child, I began to have sore throats a lot and had to have my tonsils and adenoids removed. My only surgery not related to Cowden's syndrome!

AGE 9-
Being a smart little 9 year old, I assumed I was developing my adam's apple. When I was told that little girls don't have adam's apple my parent's took me to the doctor. I ended up having a tumor removed from my thyroid and was diagnosed with thyroid cancer. I have taken synthetic thyroid hormone ever since.

AGE 14-
I discovered a lump in my breast. It was removed, mainly due to my history of thyroid cancer, and diagnosed as a fibroadenoma, or a normal cyst.

AGE 17-
I begin to have other lumps come up in my breast. Since I was past the age of pediatrics, I was referred to Dr. King. Dr. King handled all of my other breast surgeries, as well as my mastectomy. He removed the lump, mainly for cosmetic purposes, since it had gotten so big that it was visible.


AGE 19-
I had several other lumps removed from both breasts (this surgery was becoming routine for me!)

I began to notice several bad headaches around August of that year. By, October they were becoming worse and I began to have vision problems. I went to an opthamologist, who performed a field vision test, to check my periephral vision. He also noticed a lot of swelling on my optic nerves and sent me for a CAT scan. The next morning, he called me to let me know that the CAT scan revealed a brain tumor on the base of my cerebellum. He instructed me to go to the ER and meet the neurosurgeon. A MRI revealed that the tumor wasn't necessarily the problem, but it was blocking the flow of CSF (cerbrospinal fluid) and causing hydrocephalus, which was in turn causing my headaches and vision problems. They admitted me to the neurotrauma ICU, where I spent a week and a half, undergoing testing and then finally having an operation.

While I was in the hospital, Dr. Sorenson (my neurosurgeon) suggested that I undergo testing for Cowden's Syndrome based on my history. He referred me to a geneticist who did a blood draw and sent it off to a research study. A few weeks later, it was confirmed that I had Cowden's syndrome.

AGE 21

I began to have the same symptoms (headaches, vision problems, etc) and I visited the opthamologist, since I needed a check-up anyway. He saw swelling on my optic nerves and told me to call Dr. Sorenson. When I had a MRI it showed hydrocephalus again, and Dr. Sorenson suggested having a VP shunt put in. A VP shunt would act as a 5th ventricle and help alleviate the pressure on my brain. The operation was pretty simple and I was at home the next day. A week later, I began to have problems and had to go to the ER. I didn't have to have surgery, but had to get my shunt adjusted. To do this, they place use a magnetic device that connects to a magnet in the shunt and opens or shuts it, depending on what you need. I was warned to watch for problems and thankfully (knock on wood) I've never had problems with it. The way Dr. Sorenson described it to me was that "a shunt was plumbing, and sometimes plumbing needed replacing or fixing"


AGE 22

More breast issues! Fibroadenomas this time, but they are taken more seriously now that Cowden's syndrome has come into the picture.

AGE 23

I began to have more problems with my brain. The problem wasn't with my shunt, so I had another craineotomy (the same type of surgery I had when I was 19).

AGE 24

Another craineotomy (also becoming routine now!)

AGE 25

I noticed nipple discharge one morning and became alarmed. I told my grandmother first, who advised me to go to the doctor. I knew she would understand, because she had already been diagnosed with inflammatory breast cancer. I went to my gynecologist who tried to delicately tell me that I needed a mammogram. He said that chances were that I didn't have breast cancer, but it didn't hurt to be safe. When I had a mammogram, it was "abnormal" so I had an ultrasound which showed that I needed a breast MRI, then they needed to do an ultrasound guided core needle biopsy. I get exhausted just typing it! The core biopsy showed atypical cells and they told me to go see Dr. King. Dr. King gently explaind that atypical cells were referred to a "pre-cancer" and that more than likely we'd see DCIS after the excissional biopsy was done. I had the operation and when I went in to find out the results, apparently the rest of the lump came back clean. Then Dr. King referred me to an oncologist to help manage my risk. And so I began "increased surveillance" which meant mammograms, and breast MRI's alternating every 6 months.

AGE 26

My first mammogram came back normal, but 6 months later my breast MRI showed need for a core biopsy again. And ironically enough, I had to have a mammogram before my breast MRI..so I had two in one year :( They are not fun and I shall not miss them a bit!The core biopsy came back showing need for more surgery. That's when Dr. King had the discussion with me that I referenced in my first post.

And the rest is history! Some people may look at this and think how in the world could I not be utterly miserable and bitter? I try not to be..I'm not going to lie sometimes I have my moments of sadness and depression and "Why me's?" but I like to believe that "what doesn't kill you will make you stronger" And like I said earlier, I can only hope that I can be of some help to other people who are going through crazy things like this.One good thing about being diagnosed with Cowden's syndrome is that I can finally attribute each and every thing (with the exception of the tonsils) to my genetic condition and not think that I've just had bad luck! I will say this, I love each and every person who has stuck with me through all of this. A good support system means the world!

Sad to say, this little timeline may not be incredibly accurate..some of the surgeries run together so the ages may be off! I need to learn to write this stuff down...

Treasured Chest

I did a few things before my surgery as kind of a special treat to myself. To capture the way I looked...my natural form. One thing I did was make a plaster cast of my chest. Now I know that sounds very strange....why would you want a cast of your boobs? But it's a fun way to get one's mind off the seriousness of having a PBM. It's a free service provided by Keep a Breast Foundation. All you do is fill out an application and they mail you everything you need to create a plaster cast. I got my cousin and two of my sisters to help me and we had so much fun! I haven't painted it yet..I haven't decided how I want it to look! Here's the pictures of us creating the plaster cast:

The finished product

You honestly had to expect some pictures like this right? HA

Sisterly bonding

It was so hard to be patient!

The box that my kit was shipped in- I would've LOVED to see the mailman's face!

I also got some boudoir pictures taken which were SO much fun! I've seen a few of them and love the way they turned out. I can't wait to see the rest! This definitely helped to ease my stress as my surgery was looming in the near future. Now, I just have to figure out what to do with the cast. Planter maybe?? :)

Letter to Santa

 Dear Santa-

I have tried really hard to be a good girl. I really have. Things have been rough this year, but I've dealt with it the best I possibly could. So, could you take that all into account when you are making the naughty/nice list and checking it twice? I know we have a ways to go before your big day, but I wanted to get my request in early so you'd have time to work on it. You see Santa, all I want for Christmas is my TWO FOOBS. Preferably that match in size and shape. I know that's a lot to ask, but I promise I'll be as good as I can the rest of the year. And besides, if you don't bring me my foobs, then you'll have to bring me money to pay for my insurance deductable in 2012. You see, besides being lopsided with one boulder boob, I am also a poor nursing school student. Thank you very much for your consideration and if you let me know ahead of time, I will make sure your favorite cookies are ready for you when you come down the chimney on Christmas Eve. Thank you.

Love, the best girl in the world, Michelle


Ok I know that was pretty cheesy. But I figure I might as well try everything right? I'm sick of being lopsided! ALREADY! And I have a ways to go before my lat flap. SHEESH. I'm tired of obessively looking at my chest to see if my boobs are even. I'm sick of obessesively looking at my scar to see if it's healing properly. Thank the dear Lord in heaven that I have plenty of Xanex left because I think I might be slowly loosing my mind.

On the bright side, I'm getting stronger every day. For the past few days, I've managed to get out and about for a little while and really enjoy myself. Then, I come home and crash into bed because the effort of getting out and about positively exhausts me. But, I'm hanging in there, pushing through to 100 percent recovery. No more laying around all the time feeling sorry for myself- I've unleashed the beast in a way. Ready to push through and be ALL BETTER. I'm trying to put out of my mind the fact that as soon as I feel all better that it'll be time to get my lat flap.

I feel like this experience has taught me a lot of things. One thing I've learned is that I have to look out for myself, and not try so hard to please other people. Obviously, I'm not going to turn into some complete hermit or superb*tch but I simply mean that I'm not going to push myself to hard just to satisfy other people who think that I'm taking too long to recover. I'm doing this on my terms- I don't want to risk ANY MORE complications from here on out. I've reached my complication quota so it's smooth sailing from here.

So little by little, day by day I'm getting better. And when it comes time for my lat flap surgery, I'll face it head on. I'm a little nervous, because I haven't been able to find any stories on the FORCE website or on breastcancer.org from people who have had the lat flap. There's a few, but not many. So my next doctors appointment is going to be full of me asking questions. But, I'm quite positive Dr. Cooper is used to me by now :)

I guess you could say I'm in a holding pattern now. My right side has already started to heal up and looks pretty good so maybe (fingers crossed) we'll be able to proceed with the next time quickly. But until then, I'll just stand back, relax, and go with the (lopsided) flow

Michelle