Well how the hell are ya?

my baby girl Lucy

I know, I know, we have been apart much too long. After the first month went by, I just kept pushing writing further and further away--which is literally taking away part of my healing process, so you can imagine the space I have been in for the past few months.  I will try to remember things that have transpired to get you up to date, and then I will tell you a story....

After the surgery that I thought was going to be the beginning of the healing process (read: boob sacks) I was doing good. I actually traveled the day after surgery (probably not my best idea) to Scott's high school reunion. My incisions didn't hurt, I had drains in on both sides so I stuck those grenades in my bra and I can't lie, my rack looked good. I did a lot of sleeping and lots of water drinking and actually the trip was great, we got to see friends and family and we weren't in a hospital!! I also attending a wonderful wedding and birthday party with my drains as boobs--if it wasn't for my swollen face and belly from all the fluid, you probably wouldn't even question what was going on in my chest. But lets tell the whole truth....I may have had a glass+ of champagne and was taking out my "boobs" to show my friends. 

me showing drains....and getting a LOT of antibiotics

In my last post I showed you a picture of how I looked. No biggie. But then things got worse, very, very, very fast. A few weeks after surgery I started to get sweaty and really tired. My right skin sack (the radiation side) was starting to look weird and get hard in spots and in one spot it sucked in a inch long hole in the middle of my boob. It started to get hot (warning! warning!) and I started to go downhill FAST. The day after I noticed the inch long hole I spiked a 103 fever and was seeing spots. I couldn't hold my head up and I felt like I had been run over by a truck...........a semi-truck.  So Scott rushed me to the ER, I called my plastic surgeon and he advised me to request a transport via ambulance to UW (where my new surgeon lives).  So we went to the ER and my fever had gotten higher and the nurses who know me so well said "you should have came in sooner" (and I agreed...at this point I know my body pretty well as soon as I started to not feel so hot I should have went.....but I also panic about crazy things all the time, which then drives Scott crazy, in turn driving me crazy times 2..........so I choose my "we need to go to the ER" until we can both deem it necessary and it is not because I was on Web MD all day.  By the time we got to the ER my boob was huge it was swollen and bright red and it was really painful. They pumped me will fluids and pain medication and I spent the night in the ER until they made room for me at UW. 

took them awhile to find a vein upon arrival at UW

When they finally made room in the hospital we were told that Scott couldn't ride with me in the ambulance. You have to be fucking kidding me! I am sure I yelled that through my drug induced slow, slurred speech. Scott said he would drive up, they said they weren't sure if he would be able to stay in my room, read previous fucking kidding me speech. So we decided that because I was exhausted and he was exhausted he would stay home and come early in the morning. And guess what?! When I got to the hospital the room was HUGE and they had a bed brought in for my companion.................FUCK. 

my companion began to wipe down the room as soon as he arrived

My 6 day stay at UW went something like this: wow, ewww, look at that, would mind if our interns take a look at this?, 2 biopsies on my right arm (you know, that arm that I can't even have my blood pressure taken on, sure cut the shit out of it, I bet it will go well.....) more antibiotics than once person should be on in their lifetime, they weren't sure what was causing the cellulitous and infection so they had me on everything at once, when they finally found the bacteria that was causing the infection I was switched to just one really, really strong antibiotic. My boob still needed two drains, but it was starting to hurt less and look better. When I was released they gave me more antibiotics to take, at that point I had been on some sort of antibiotics since June-no joke.

Me wandering around at UW, not sure if you are supposed to, but Scott and I took many adventures like this

So here I am at home after maybe 10 total hours of sleep after my 6 day stint in the UW joint and Scott and I were stunned. We didn't see this coming at all, another hospital stay?! WHAT?!!! It took us awhile to recuperate. Scott had taken the time off work and stayed with me in the hospital. But I am a hard patient....pain medication makes me crazy and paranoid, so I didn't sleep at all, I talked nonsense and Scott can only handle so much crazy (he went on a lot of runs).  So we were back to having hospital stays and ER trips looming over our heads again--we had just gotten rid of them....

Me and Lucy finally sleeping after 6 days, it was amazing to be in my own bed

After I recouped from the UW business I started to see my belly swelling and having some pretty crazy GI stuff go on (I may or may not have "broke" 2 toilets at a friends house).  Things were coming out of nowhere, I would wake up and feel fine, then that afternoon I would spend on the toilet. One day my jeans would fit and I could make it to the 3rd notch on the belt, the next day there was like 2 inches between the button and the button hole (and no I didn't put them in the dryer). My stomach continued to grow and I felt swollen everywhere (still do) and the pain and bathroom crap (HA) was too much. I went to see my gastroenterologist, he said that because I had been on antibiotics for 4 months straight (and high doses) my GI track had no good bacteria.........................results in an infection of sorts that my body just doesn't know what to do. So he put me on another antibiotic that kills bad bacteria and helps good bacteria grow--I just finished it two days ago, so lets keep our fingers crossed that I don't spend Christmas on the toilet.

Whew....there were lots of great things that happened since I wrote last--I will write and show pictures in my next post. But here is a little taste of what I have been going through.....this experience happened to me just yesterday............

My first question is this: Why do stores fold their jeans and put the big sizes at the bottom (I have gained about 20lbs with the GI stuff and being immobile for awhile)? Seriously....my chubby ass doesn't need to try to balance on my feet, keep my purse together and teeter-totter. I don't need to rock back and forth and try not to fall backwards onto some skinny bitch looking at the size 0 on the rack behind me, the small sizes should be on the bottom, those girls can balance just fine. I want my sizes at eye level--ridiculous! So because of the weight gain my jeans don't fit every day, some days my belly isn't swollen, others it looks like if I squatted down to look at jeans I would pop out twins. So I went to buy pants at the local Target (I know, I know, big spender!) I had about 20 pairs of pants....I had no clue what size I was and if my belly was going to cooperate. The first 6 were a no go, I brought them out to the lady and exchanged them for the next 6, all 6 were once again a no go, I brought them to the lady to exchange them for my next 6 and she said, and I quote..........."you are not wearing any pants."

I will give you a minute for that to sink in.

Not wearing any pants? What is this bitch talking about..............................holy fuck, I drop the jeans and run/waddle back to the dressing room. I just walked up to the Target lady not wearing any fucking pants, how do you recover from that? What would you do? I was leaning towards crying (but I was worried that I would be arrested because I walked around in my underroos for no reason). I mean who does that? This girl. It was a complete and horrific accident. I was just so focused on trying to find jeans, off/on, off/on, off/on, exchange............. I just forgot the "change" into your own jeans part before walking out.  So I put on my jeans, went to get my next 6 and mumbled something at the lady about cancer, chemo brain,crazy day, while not making any direct eye contact. And the thing of it is, I didn't find one damn pair of jeans. 

I will blame it on a few things: 

1. clean up the dressing rooms, and people bring the clothes out (preferably wearing clothes) when you are done, my jeans must have got lost in the crowd of unwanted clothes on the floor

2. chemo brain--which I thought was getting better, for as long as I can remember after chemo I have never taken a shower and been 100% sure that I washed the conditioner out of my hair, I literally can't remember doing it. I know.....crazy! But for the past 3 days or so I could, so I thought my chemo brain was fading away................but it's not. Apparently my chemo brain wants me to be some sort of nudist. 

In the raw

I figured this was the best way to show everyone how I am doing.... Straight out of the shower with drains around my neck. This is going to be a long, long road. Not to mention the mind-fuck that happens when I look in the mirror and see this. The pain is its own battle.

D is for Dori, not my bra size

saying goodbye to my second set of boobs, that is two too many.

Well tomorrow is the day folks—I will be checking in at UW hospital at 12:15pm to have these implants removed. I am thrilled with my new plastic surgeon and I know that I am in good hands (literally). I have been miserable since the beginning of June when I had my right implant that migrated up to my collar bone removed, the radiation scar tissue scraped and cut out (cringing while thinking of that malpractice) and a new implant placed there. From there I have been on more antibiotics than most people should be in a lifetime and have open sores on my body, my hair is falling out, I am in constant pain and am achy like I have the flu. Not to mention not being my bubbly sunshine and rainbows self. (HA)

me loving my new boobs!

I had a necklace created for me with tomorrows surgery date and “done and done” (a favorite phrase of mine) stamped into it. The necklace was designed and created in front of my eyes by Bonnie of Birth Designs (http://www.birthdesigns.com). It is amazing and perfect and I can’t wait to see what else she will create.

I am fortunate enough to have extreme love and support from friends and family. I have been held up when I thought I was done and without all of you I wouldn’t be who I am today.  One of these people is my wonderful cancer doula Patti Ramos (http://www.pattiramos.com/photoshoots.html), who happens to be also be an amazing photographer. Prior to my bilateral mastectomy we took lots of photos of my old boobs and my dearly missed nipples.  I am looking to my surgery tomorrow as a new beginning. I am taking out these infected implants and giving my body a chance to heal. So following tradition we took some photos to say goodbye to these breasts. It was a great experience to take photos and have Scott participate. 

Scott and I in our police lineup



yep, I ran around naked in the studio and Patti covered me with lace

proud and infected

Not only did my real boobs try to kill me, my fake ones are too. So let’s start over shall we? Let’s try this again. I will take all the positive vibes and love you can send my way tomorrow.  Starting tomorrow I will be boobless, but if I could fill those ‘skin sacks’ with hope after surgery tomorrow I would be a DD.

sour hope

Well I wish I was greeting you with better news, but you know me, I throw a fit and then apologize later. So here it goes………..my implants have to come out, and by come out I mean removed, stolen, sliced, torn, dissected, leaving me with two (what I have lovingly decided to call) “skin holes” for at least 6 weeks. I have images of being able to “tie them over my shoulder” or the old lady Magda’s boobs on There’s Something About Mary (minus the nipples and tan of course) I have no nipples and I already had cancer once, I will pass on the tan—thank you very much.

So here is the story. I have felt shitty since my surgery on the 1^st of June. You are aware that I had an intense infection, drains, and more antibiotics than I can count. Nothing seemed to make a dramatic difference, and then rashes, sores, more sores and achiness followed (and has yet to leave). Yesterday Scott and I went to my new plastic surgeon at UW and within minutes he said that my implants had to come out—I am a textbook case of an infection and that there is bacteria that is clinging on for dear life to my implant.  And to put it gingerly my previous plastic surgeon fucked me big time. After the implant migrated to my collar bone on the radiated side there should have NEVER been a surgery to scrape out the tissue. Standard of care would have been to remove said implant and then being a surgery to create a new breast with my own tissue………that didn’t happen (and was also never mentioned) so here I am. I feel cheated. I feel like I should have been given the opportunity to have a fair shot this time around. I blame myself for not doing as much research as I had previously, but come on, really?! It is your job to be a plastic surgeon in 2012, not 1980 so get your shit together.

I heart my new plastic surgeon and he was very polite about telling me how wrong my previous surgeon was. I now just have to wait for insurance to approve the surgery and I will be in the OR as soon as possible to have the implants removed. I will then continuously be dosed with antibiotics and won’t even discuss another surgery to work with my Magda boobs. That will be an image that will take a bit of time getting used to, but if I can finally not be in as much pain I would let you cut off my foot and I would work with it.

Once my body has settled down and the infection, sores, achiness, fevers/chills, anxiety and pain are at a reasonable level we will shake things up some more by doing a very intense surgery that will use skin and fat from my stomach to create new boobs. And then after that another surgery to adjust the fat to make things more symmetrical. I will go into more details later on, because right now my body is literally too sore to type. My eyes are red and raw from crying and I am so drained I think I could sleep until Monday. But I only have these boobs for a little while longer so I plan to push them together in a bra, throw some glitter on them, and my milkshake WILL bring boys to the yard.  But first, a nap.

cry me a river

I had a great blog that was almost complete about how wonderful and crazy things have been. How I went to my 10 year high school reunion and my sister Kristi got married. That post is going to have to wait..I am in the middle of a cry-fest that is so epic it needs to be documented. I am crying because Scott feels guilty, he can't seem to relax and his mind is always going. I am crying because he has caregiver guilt and I can't give him the support he needs. I am crying because I am mad that he feels guilty, I am mad that I am not healthy enough for him. I am mad that when he looks back on our relationship all he talks about is how I was sick, I am crying because I know he is right. I am crying because I think he should be with someone healthy. I am crying because there isn't enough positive thinking in the world to heal somebody and that just creates open-season for negativity. I am crying because I am sitting in my bathtub in my clothes with the door locked. I am crying because my entire body hurts and no one knows why....I am crying because stress makes the rash worse and I have small lesions in my mouth now and my husband thinks I worry too much.

I am crying because earlier today I was feeling great. I am crying because that feeling has been pulled out from underneath me. I was thinking of ways Scott and I could work together, give him something to do other than work and was thinking of putting a race together to raise money for breast cancer. Now I feel like I am not sure if I will be able to get out of bed tomorrow. I am crying because I feel behind in life. Because I got a fucking infection after surgery and life could use a good slap to the face. I am crying because my fingers hurt from blowing my nose so I have decided to just let the snot run down my face. I am crying because I feel alone, I am crying because I like the solitude. I am crying because I am in the bathtub and my clothes are wet from the bathmat. I am crying because I will now have to change my shirt and I am not sure if I have any more soft ones that are clean that won't hurt my rash. I am crying because it hurts to lift up my arms to change my shirt.

I am crying because Scott can't relax. I am crying because I am not the person he needs to talk to. I am crying because thinking of crying makes me angry, which in turn makes me cry. I am crying because I am sure that our versions of healthy are completely different. That we have expectations that don't have a common ground and I am afraid it will cause a drift we can't breach. I am crying because I need this feeling to go away. I am crying because I don't want to feel this way anymore. I am crying hoping that when I am done I will feel lighter, that something will have come out of it. I am crying because I know that won't happen.

I am crying because I miss my dad. I am crying because I know if he was here there wouldn't be fights about fixing bathrooms or garbage disposals. I am crying because I know my dad would be able to help Scott, that it wouldn't be a chore, they could bond. I am crying because my dad missed out on seeing me be so strong--I am crying because in times like this I feel like I am failing at being a survivor. I am crying because in the medical world after treatment is done they just let you go, but your body is then reeling from all the treatment and you need more support than you did during chemo. I am crying because our bathroom needs to be gutted because the sub-floor is soaked and we don't have the money. I am crying because being an adult is hard. Because being an adult means you probably shouldn't sit in your bathtub and cry hysterically with the door locked--but we do. I am crying because you should be able to, I am crying because it is the only way I know to cleanse myself of some of the weight on my shoulders. I am crying because I feel like I need to fix everything, and I can barely fix myself. I am crying because I am afraid to tell people what is going on because they will think "here she goes again" blah blah blah medical, cancer, blah blah, complaining, blah blah. I am crying because I worry the cancer is back. I worry that the reason I have all these problems now is because my body is busy fighting a cancer and can't focus on healing wounds or fighting off other infections. I cry because I am afraid my oncologist, husband, and others will roll their eyes if I tell them.

I cry because tears are the only outlet at my disposal. I am considering turning on the faucet and taking a shower in my clothes. I am wearing my velour pants (as I call them, my plastic surgery pants) and I am wondering if they will soak up enough water to act as a cold compress for my leg with is unbelievably painful. I am crying because I can't come up with the words to understand where Scott is right now. I am crying because I am frustrated that I can't be his outlet, I am the last person that wants to hear about how me being sick has affected him. I am crying because I know this will make others cry. I am crying because I feel like I lost the momentum I had before I was diagnosed. I am crying because I can't seem to get a foothold on anything in the future. I am crying because I am afraid to make plans, afraid to drive my car, afraid to be around too many people, afraid to be afraid. I am angry I am afraid. I was a ball-to-the-wall type of girl....I wasn't afraid of anything, now all I seem to be is afraid. Maybe afraid isn't the right word, maybe I am crying because my life isn't perfect. That my hard work amounted to something small, and then moved backwards. Maybe the tears are a result of my disorganized brain and piles of laundry. Maybe it is because I feel behind and am overwhelmed.

Maybe it is because it is the one thing I can control when it starts and stops. I am crying because I know Scott is out there crying. I am crying because people may read this and view it as weak. I am crying because they are wrong (but I am not sure how to prove it).

Now if you'll excuse me I am going to move the computer out of the tub and possibly take a clothed, cold shower. Then there is a very good possibility that my illness, rash, swollen face and tears could use a drink.

normal is just a setting on the washing machine.

Scott and I pre-op

Well it has been just a little under two weeks since I had my right implant removed and my radiation scar tissue cut and scraped and a new implant put in. I was lucky enough to have my family both pre and post-op. Unfortunately many things that could have gone wrong have.... I woke up in recovery in severe pain, I was crying hysterically and found out that they weren't allowed to give the prescribed pain medication that works for me in recovery, it was only allowed in the operating room. Because I have had to take so many IV pain medications through the course of my treatments I have a high tolerance and it can be a big issue when surgery is in play.  As a result, I was in recovery for 3 hours, strictly to get my pain under control and for me to stop crying....

my pre-op cheer squad!

my post-op fan club!

Once I was under control I went to my room and had my wonderful family waiting. We were all curious to see if my boob would no longer be on my collarbone--success!! My right boob was pleasantly in the correct position, seeing eye-to-eye with the left.  But then, as usual, my body had a mind of its own and my right boob went crazy. I have a severe infection making my boob red hot, rashy, and retaining fluid... I went on antibiotics and upped my pain meds...spending a week literally not able to do anything--stir crazy has nothing on me, I am still house-bound (I think I watched everything on my DVR....and every somewhat interesting looking movie at redbox--I mean I even rented We Bought a Fucking Zoo..........not sure if that is the title?)  everything hurt and it wasn't getting better....my boob kept growing, and fluid began to leak out of my incision.

my swollen boob, you can't really see it, but it was about twice the size of my other boob and BRIGHT red hot

 So off to my plastic doc I went.......again.  Yesterday Scott and I went to see my plastic doc and he agreed that there was way too much fluid for my body to be able to absorb (which is what we were hoping would have happened last week).  So he used a scalpel, inserted a 4 inch long needle with catheter and then before he could attach the huge syringe blood and fluid exploded all over the drape (and my pants) because it was SO full.  It definitely explained why every time I moved I heard a sloshy sound.... 165 cc's of fluid were removed, and my doctor sewed in a drain which last night leaked all over while I was sleeping.  I am also on two new antibiotics--the big guns!

actual syringe used and it is HUGE (like a banana) and it sucked out 165 cc's of fluid

the drain added yesterday, AFTER 165 cc's of fluid was already taken out....lovely

lots of drainage going on here!!! you can see how red by right boob is here, still have the drain in...

So the journey continues....I am still on lots of pain medication and as a result am home bound. I have a drain in and somehow it is poking me from the inside randomly...I think the catheter may be resting near a stitch....it feels like a hot poker so I think it must be pulling on it......not enough pain medication in the world....

I now find myself struggling. The good news is that I made so much progress mentally that this hasn't pushed me over the edge. I have been able to handle the rollercoasters better than I would have a month ago. We always joke that if it could happen, it probably will (at least in terms of my health). My poor body needs a break, it needs time to heal...I think it is angry and fighting me at every corner. Hopefully this will be my last wave and it can become more of a smooth sail from here.  I am looking forward to being able to be social, to be able to be reliable, and to have a routine of health and fitness. And I would like to be off antibiotics because I could really use a drink...

move, get out the way!

Scott and I at the Northwest Hope and Healing Fashion Show

Hi there, nice to see you again....it has been too long! My apologies for the lapse in time, I have been overwhelmed, underwhelmed, sick, tired, angry, frustrated, and too stressed to type. But typing is what I should have been doing all along.... Today I have surgery to remove my right implant, scrape and slit the scar tissue from radiation and have another implant placed--we are hoping that this will allow me to no longer have a boob on my collarbone.

Since my last post things have changed--some things have become clearer, and others seem like a dream that I will not be able to achieve. Since my diagnosis (and during treatment when I was really isolated) I have begun to have anxiety, panic attacks over having to go to the grocery store, social anxiety of big places, anxiety of things that won't even happen, I worry about worrying.... So I decided to take it head on, I walked in a fashion show in front of 400 people with other survivors--if that isn't a bitch-slap to cancer, I don't know what is.  And it helped, I was empowered and I had a great time, afterwards I felt like I could do anything...........

That feeling didn't last forever, but it did give me the boost I needed to get out of a rut. I still have some wounds on my legs and arms that aren't healing, my shoulder hurts more than ever, and I have surgery scheduled this coming Friday at 3:30pm to have my right implant removed, more scar tissue scraped out and cut, and a new implant placed. We are hoping that the result will be less pain (having the implant off my lymph nodes and collar bone) and my gals will be more even. Honestly though I could care less about them being even, I just want the pain to go away--and then I will have better result from physical therapy (which I am still going to for the car accident).

Waking up daily and being in pain has become my own "cry me a river" story. I don't mention it much but I am on edge all the time. The pain makes everything else amplified, I get overwhelmed easy, I snap at my family, I have trouble sleeping or focusing on something for a long period of time. Sometimes I have a day where I feel "normal" and I do as much as I can that day, but the next day is like a bad hangover.

I am ready for a new start....I have started to get extremely nervous for my upcoming surgery. I have done it before and I know the routine, I love my surgeon, and I thought I wouldn't be getting the butterflies that are currently making me stay in the bathroom like it is my job. I think it is because this surgery could take away a lot of the pain and give me back the opportunity to heal physically. I have been working really hard on healing mentally (putting things together and making sure I surround myself with supportive people) but not being able to heal physically has made it feel disjointed--they aren't lining up with each other and as a result I feel like I haven't made as much progress as I should be.

I cleared my circle.  I spoke with another survivor and she told me how she got rid of things and people that she didn't like after she was diagnosed. I did the same thing! I didn't realize it but I did, even in my chemo and post-chemo haze I was able to weed out people that focused more on themselves than healing and support. What a great coping mechanism that I didn't even realize I had created until I looked at it as a whole picture.

Scott painted the bedroom and we changed everything around (it is no longer my chemo coffin) it is a place where I can relax and sleep. Though my anxiety has limited my social interactions, I still have a circle of amazing support that are unbelievably selfless and loving. I am in a place where I am feeling held.....where if I fall there are many hands to catch me, and if I need a boost they are there.  I am hoping that with physical healing my anxiety will lessen...it has been hard to focus on things when the pain is always in the back of my mind, a continuous circle that then causes me to react physically.

We are working on switching up things at the house, finally doing all the things that we talked about doing forever. We are slowly making it our place, our place AFTER cancer, our place for me to survive and where we can thrive together and take on the new hurdles that life will throw at us, but hopefully keeping cancer as something we have went through, rather than something that is on the horizon. 

I am not the same person I was three years ago--I look at photos and remember how it felt to not have real things to worry about, to just get to go about life, no lessons learned. There are a few things in my past that have changed how I view the world, losing my father, getting married, having cancer--and the woman I am today is who I was meant to be. I am using the strength that I have gathered to get through all of this, to be able to look someone in the eye and tell them I am a Survivor and mean it with every fiber of my being. I have been through hell and back and there is nothing I can do to change that. I have never been a "glass half-full" type of gal and my cynicism has definitely grown through tragedy...but I am honored to wake up each day and fight.

Today begins another journey, welcome aboard. I am off to check-in at the hospital!!