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!!

you don't leave the people you love alone

It has been awhile, so I put together bits of blogs I wrote but didn't publish to catch you up on what the last month has been like:

rash on legs...........not awesome.

"If it isn't one thing, it is another. Insomnia, shingles, bitchiness, itchy red spots on my legs, intense bruising, a collar high boob, lack of communication, overbearing stress, relationship concerns, tears, booze, migraines, lack of focus, no motivation, feeling overwhelmed, blah, blah, blah.....

I need to get my head straight (and a boob lowered). After a pretty intense breakdown (two days worth of it a few weeks ago) I have decided that I need therapy........though I planted my feet in the sand against it (yes, I know I have a masters in psych and counseling--and yes, I know it is ironic). But here is why I have waited...I wanted to do it myself. I wanted to be able to work through the mush my head has become and come out on the other side, "fuck cancer, I can take care of myself" type of mentality. Not to mention that traditional therapy isn't my favorite, so I am going to search out a therapist that has experience with breast cancer patients (hopefully under the age of 50) and see how things go.

I have gotten progressively more depressed since my car accident. A snowball affect that finally took over. I have been so stressed my body can't fight the slightest irritation. I continue to have shingles on my right breast (I am on my 3rd outbreak) and had a rash on my legs that was so itchy I couldn't walk, I remained in bed trying not to itch. I cut my nails short and wore socks to bed to help prevent me waking up with blood streaming down my legs. I have been on two rounds of antibiotics, one round of steroids and gave up internally. For being a smart lady, and professionally trained to support others, I have found out that I don't know how to support myself.

Maybe "gave up" is too harsh....how about so overwhelmed that it hurts to breathe. How about being blasted with great ideas and not having the energy to do them. How about being in constant pain and having a boob at my collar bone that refuses to play nice? How about being depressed and thinking I could keep it to myself and as a result, it just got worse.  So I had a melt down, a BIG one....not a nervous breakdown or anything, but I sobbed uncontrollably for two days and was miserable. I have stopped wanting to go to the grocery store, social functions, or anything really..........the anxiety just builds and I find it easier to stay home. (luckily I love my job and can continue to do that no matter what state I am in, in fact...I find it keeps my mind of a lot of crap)

I have turned inward but with little return........I was thinking that I could just meditate and move past this, quick and easy. Wow, I was wrong. No one warns you what happens when treatment is over, when you don't get lab results weekly assuring you that your counts are good, that you feel crazy because every ache or pain is "cancer". I was so focused on "healing" I forgot to heal. I glazed over the pain and exposure I had and I stuffed it, I stuffed it so deep it made my ass bigger. There was no getting to it, I was going to move on and not look back. HA"



And my current update:
I am now making incredible progress...........I still have a rash on my legs and will probably need another round of something because it has begun to itch again, but I am not letting it put me back where I was. I am lucky enough to be benefiting from wonderful light therapy and a change in perspective. I am honoring myself on the days that are just too hard because of mental or physical pain, I am letting myself have those moments without letting it affect my perspective the following day. I am working on new routines to keep me focused on stuff other than the physical pain, eventually I hope it will include exercise, right now it is more like:

-wake up, try to not hate the fact that pain is already taking over my body
-move from bed to couch, drink diet coke (trying to quit............one thing at a time here people)
-check emails and work whatnots
-go from couch to office chair
-lay in bed for awhile to help avoid taking a pain killer
-smile at Scott so he knows I am trying
-watch some TV, read a book, talk to Lucy
-forget to eat lunch, eat a mid afternoon meal so I can take my supplements
-stomach ache from supplements
-lay in bed until stomach ache goes away
-decide bed feels nice, put Lucy on bed
-Call mom
-see Scott when he comes home from work
-fall asleep
....repeat

Progress, not perfection.

oh balls

the front of my Valentines Day card from Scott

the inside of my card...he did some editing

I haven't peed on any randomly found pregnancy tests, so I feel like I am making progress....  I did go on a vacation, my first vacation since I was diagnosed, and it was amazing. Me and my collar bone high boob flew to Vegas to stay with one of my best friends Tasia and her kiddos. The last time I flew out to see her was just a few short weeks before I found the lump in my breast. That was the last time I had been on a plane, now here I am 2 years later flying to Vegas to see her again. Our lives have changed so much in the time that stretches between my visits.

I spent a few days at her house and then took my suitcase full of wiener paraphernalia to a suite on the strip to set up for my sister Kristi's bachelorette party. My sisters and accompanying bachelorette party arrived Friday. My body sure isn't what it was, but I surprisingly held my own. I walked more than I have since my car accident and despite having to go to bed before the rest of them I felt great. We then rented a van and drove (for 5 hours) to the Grand Canyon for one night and I was able to see the sunrise the next morning at the Grand Canyon.  My sisters and I haven't always seen eye-to-eye (translation: I was a huge bitch and they tried to avoid my crazy wrath) but since we have been adults they are my best friends. The trip was an amazing opportunity to spend time with them.  It was good to know that I could survive a trip, even if my feet were swollen and resembled balloons when I got home, I caught a cold, and my shingles are back with a vengeance.

Life doesn't get easier. I have been waiting for things to "get better", to feel better, to get easier........bullshit. I don't feel like that is how things go. Life is one obstacle after another, you are continuously changing and growing and sometimes it slaps you in the face, I have my feet firmly planted in the mindset that you just have to slap back, actually I would go with a swift kick to the balls.  Prior to leaving for my trip I found out that a fellow doula and friend had been diagnosed with breast cancer. The "it's a small world" factor really isn't positive in this case. She is a fighter and I know will come out on the other side of the bullshit, but it still reminds me that life changes in a heartbeat.

Good morning at the Grand Canyon

I have gotten complacent. I stopped eating all the fresh veggies (not that my eating habits have gotten that bad) but I am not stuffing my face full of multicolored plates of fresh harvest anymore. I drink more than my fare share of wine, rather than avoiding alcohol as I did before AND I haven't been working out 30 minutes a day since my car accident. I then have nightmares that my cancer comes back. That because I ate chicken nuggets instead of a salad my lymph nodes are being attacked by cancer. That because I had a second, or third glass of wine my insides just give up and cancer takes over. I am rushed awake by these nightmares in a full body sweat and I just lay there looking at the ceiling. It takes me a few minutes to realize that I am okay and not a prisoner of my bed as I was during treatment.

I have done everything in my power to lessen the chance that my cancer will return. But a human being can only do so much, I can't stop my cells from turning on each other, wine or no wine. Life has a mysterious way of pushing you into a reality you weren't expecting, or prepared for....so you adapt. I am aware that my cancer may return, statistically it probably will at some point. But that doesn't stop me from kicking life swiftly in the balls.

A great picture of my VERY high right boob and normal left boob

so I peed on it



My double mastectomy breast cancer awareness snow boobs!!!

I was looking for something in the bathroom of death (we have discovered that we have black mold, fuzzy mold that looks like it should be growing on fruit, and water damage in our tiny master bath.....which is a whole story in itself because the last thing I need is to be breathing in mold spores) but I ventured in looking for a mirror to pluck the ungodly hairs that Tamoxifen has brought to my face and I found a pregnancy test...........................ouch.

I remember the days when I would pee on them and cross my fingers (and promise everything holy that I would be the best girl in the world or whatever I needed to do) that they would be negative. Oh come on, we have all been there....ladies?

I remember the days when I would pee on them and cross my fingers that it would be positive, we were ready, apparently our world wasn't.

I remember the day I found out why, I had cancer and my estrogen was all over the place, my body is not the best host for a human, not then, not now, not ever.

So I found this pregnancy test, and I peed on it. In case you are curious, it was negative.......considering I am on Tamoxifen and have an IUD I wasn't holding my breath. All the same, I peed on it.

My 2012 hasn't really been all that great. I went into this year with an internal gusto....a "I will kick its ass" attitude (and a bit of a hangover) and found myself somewhat of an emotional puddle of illness and internal frusteration. But I think that I am back on track now, thanks to some wonderful developments....that I will update you all on when I haven't been such a haphazard blogger--you can tell that I am not doing too well when I haven't blogged in over a month. I am working on it............I love doing it, but sometimes I just don't allow myself to do it as a punishment for not "being where I should be" or all I want to do is bitch so I feel like I shouldn't write ANOTHER blog about poor me bitching, but somtimes the bitching is funny, it is cathartic, so I will put it on my to-do list (maybe it will turn a switch on in my brain).

So we had a snow storm and an ice storm. Scott and I made our little snow family, lost some power, and found out that we have a mold problem in our master bathroom (see bathroom of death above).



my snow "Dori"

Our snow family

snow "Lucy"

The melting of the massive amount of snow and ice exaserbated the problem and it is now in quarantene until we are able to afford to fix it, or until I can even wrap my head around all of this.  It seems like there is just one thing after another with this house--I loved it when we bought it, it was in a great neighborhood (come to find out we have not the best neighbors) but it isn't just the bedroom that reminds e of being sick, it is the whole house. I have memories that are tied to each piece of furniture, to particular dishes in the kitchen, to our patio (where I shaved my head). I can remember collapsing on the stairs, the numerous nights crying in the bathroom staring at the green walls that I once loved..........emotions are sucked into everything here. Scott and I have saged it, I have meditated about it, but when I am already feeling a bit down, it tends to overpower me.

Oh, and I had shingles on my right boob. This bitch of a boob is really not cooperating. It has actually gotten higher than it was after my surgery, it is now almost touching my collar bone. I saw my primary doc and was given prescription for antibiotics, we weren't sure it was shingles because I don't have feeling everywhere on that breast so I couldn't feel the pain. But then I went to my plastic doc and it was confirmed..........I had shingles like you wouldn't believe. I still have a little bit of the pain under my boob and some dried bumps, but haven't been contagious for some time and hope that it doesn't come back.

Shingles............not awesome.

Alright 2012, let's work together on this. I am open to change....are you?