Tuesday, January 31, 2006

NEWS (NOT SO EXCITING)...

posted Tuesday, 31 January 2006

Yesterday morning, as I was eating breakfast, the incision in my left breast pulled open, leaving an open "hole" (and creating quite a "leak"... I suppose that since Abby was not visiting at the time, it counters my hypothesis of a correlation between her visits and these uncomfortable complications!) I called Dr Borah and went in to see him today.

Figuring that he would just put in a few stiches and send me on my way, I stopped first at ZS and had lunch with my project team (that I would be working with upon my planned return to work on March 1). It was a nice lunch and it was good to catch up with old teammates and meet new ones. I then headed up to New Brunswick to see Dr Borah.

He gave me the unfortunate news that I would need to go back into the OR for more surgery, as I now basically had an open wound and that would compromise my healing. Since the expander implants are a foreign body, infections are particularly dangerous and will not heal. He wanted to schedule it for tomorrow, but there were no openings until Thursday morning.

While this isn't "normal", it isn't unheard of. During the mastectomy, a number of blood vessels are severed. The only ones left behind are the ones that go through the whole length of the thin flap of skin that is left (since the tissue underneath is gone). The vessels can barely make it to the ends of the flap, making healing difficult (with an inadequate blood supply).

My surgery will be Thursday morning at 8:30 am at Robert Wood Johnson in New Brunswick. I realized after I left the dr's that I have no idea how to get there... guess I'll need to call tomorrow for directions. I need to be there 2 hours early, so I guess I'll be leaving home between 5 & 5:30am on Thursday... at least I'll just be sleeping all day!

I was hoping that this wouldn't involve "general anesthesia" as I've had bad experiences both times with it (In the "vomit wars", anesthesia is beating chemo 2 to 1). Dr Borah said "I didn't want to be awake for this". Oh well - it was worth a shot! It will be an outpatient procedure, so I will be home sometime Thursday pm. Mike was planning on visiting again this weekend and was able to take off from work early, so he will be here to take me for my surgery. Mom will likely come out Thursday/Friday to make mac & cheese and soft boiled eggs (comfort foods from my childhood) and just be a mom.

Keep your fingers crossed for me... and your toes...

Monday, January 30, 2006

ALL THE GORY DETAILS

posted Monday, 30 January 2006

So here's all the gory details... for those of you who like to see the scars and know all the facts... I know some of you would rather not hear all the details, so I've listed them in a separate blog entry and you can take it or leave it!

My surgery on Jan 4 consisted of two parts: bilateral total mastectomy + reconstruction (tissue expanders).

First, Dr Dultz performed the bilateral total mastectomy. The goal here is to remove all the breast tissue from both breasts (however, we can never be sure that we've gotten it all). The breast tissue runs all the way from the collarbone, down to the edge of the ribs and from the breastbone to the muscle in the back of the armpit. As I was having immediate reconstruction, they tried to remove as little skin as possible.

Once this was complete, Dr Borah came in to place the tissue expanders. These are hollow, empty sacks, like deflated beach balls that are put behind the pec muscle. He then sewed the flaps of skin closed. The expanders have a small tube and valve on them. Once the incisions heal, the Dr will gradually inject saline into them, stretching out the skin and muscle, until I have the perfect rack (not sure what that looks like quite yet). Once that is done, they will wait a few months and I will have an "exchange surgery" to swap out the expanders for permanent saline implants. This surgery is outpatient and relatively minor, compared to this one. Several months later, he will do the nipple reconstruction and tattoo-ing (Mom - I swear that's the only tattoo I will have!)

Because the right breast had not been operated on previously, they were actually able to fill the expander with some saline, leaving a small, lumpy, unattractive breast mound. The left breast, which had already been half-way removed during my surgeries last summer, looks like a squished hamburger patty, with a lumpy, deflated beach ball in it. I have a scar on each breast, running horizontally across the breast -- 4 inches on the left side and 3 inches on the right. I feel like I look like an alien (not sure why I think aliens look this way), but I know that this is temporary and a process and I can't have overnight results. So, I'll try to be patient and see how it goes...

Sunday, January 29, 2006

NEWS (EXCITING, I SUPPOSE...)

posted Sunday, 29 January 2006

I almost forgot the biggest news of all... when I went in to have my drains pulled with Dr Dultz, she gave me the pathology reports from my mastectomies. Both breasts came back clear - no remaining cancer was found so I am officially "cancer free". There was some "fibrous tissue" in my right breast (the healthy breast), but no cancer or pre-cancerous cells.

In retrospect, my reaction to this news is kind of funny. One would think that I would rejoice and celebrate... but to me, it is just another piece of information in this whole puzzle. One would think that I would have posted it immediately to everyone and start making phone calls... but I didn't even think to tell my closest friends immediately. Perhaps my mind is just so overloaded with all the information it has had to process and it's lagging behind a bit... maybe one day, maybe a few weeks from now, I will just wake up... and my brain will have caught up with things... and I will fall to my knees, relieved and thankful that this leg of the journey really is over. For now, I just figured you all might like to know.

Saturday, January 28, 2006

PEACH FUZZ

posted Saturday, 28 January 2006

Ok - so there have been some requests to see what the hair looks like these days... Here you go! LC

Saturday, January 21, 2006

PCG'S ROCK!

posted Saturday, 21 January 2006

Again, I under-estimated just how tough surgery would be. Chemo was way easier than I had built up in my mind... but surgery was (yet again) way tougher.

Annette warned me that it was a week before she could lift a jug of milk... Bleh! I figured I'd be up and about quicker than that. I was wrong.

When I got home from the hospital (and for the first week), I was surprised that:


• I couldn't open the sliding glass door to let Otis out into the backyard
• A glass cup filled with juice was too heavy to life -- I needed to use plastic
• I couldn't tilt the glass back to drink -- I had to use bendy straws
• I couldn't put on a button down pajama top without help
• I slept more than I was awake... however, sleep never lasted for more than a few hours before I woke in pain
• Percocet really does help... some
• I certainly couldn't lift a jug of milk!
• Surgical bras may "keep stuff all in place"... but they are not comfortable

I was blessed by the fact that I had friends here 24/7 for three weeks after I got home from the hospital. 24/7. I don't know how I would have managed without them. Whether you stopped by to visit... or stayed for a while as my "primary care-giver (PCG)", it was appreciated. Visitors helped me to forget that I had been sitting on the couch for 15, 16, 17... days in a row, without doing anything... my PCG's were amazing. They kept me hydrated, fed me, wiped down my back and arms with "spa moisture cleansing cloths" while I was unable to bathe, and plumped my pillows to create a "cocoon", enabling me to get comfortable for a few hours. They documented my medicine intake (I was taking 6 different meds for those first few days)... someone even made an Excel tool to document and plot the drainage rates from each of my drains (I love dorks!) People brought me jammies and coloring books and flowers and sudoku puzzles. They cooked me meals, cleaned my house, did my laundry, washed the dishes and walked my dog. I am so grateful for the outpouring of support that I got from my friends over the past three weeks.

I am finally up and about. I can pour the juice and even make coffee and cereal!

Special thanks to my PCG's for putting up with me and camping out at my house for a while -- your sacrifice and dedication to me will not be forgotten and means alot to me:


• Bonny
• Mike
• Nancy
• Abby
• Sara G
• Mom

And to my other friends and visitors:


• Vanita
• Annette
• Charlene & Jeremy
• Heaton
• Suzannah
• Jenny
• Gwen & Lila
• Beth & Terry
• Julie
• Catie
• Biddle & Coyne
• Susan & Brian
• Ken
• Rich
• Jess, Abby & Upma
• Everyone who sent cards, emails & called to see how I was doing
• anybody I might be forgetting (sorry!)

Sunday, January 15, 2006

LEAKY DRAIN

posted Sunday, 15 January 2006

Almost every time Abby comes to visit, I start to "leak"... weird... but true! When she was here in September, we got ready to go for a run (I call it a "run", but it is better described as an embarassingly slow 1 mile "shuffle") and I noticed that there was fluid leaking from my incision... despite several attempts to close it up, my body wasn't healing right (due to the chemo) and I spent the next 4 months covering myself with gauze every day, to keep clean and protect my clothes. What a pain! At least the surgery earlier this month put an end to that problem! Anyways, Abby came back down this weekend to help me out (her other two visits were wonderful, as they found me in relatively good health, and we got to play... this visit really was more to take care of me... for which I am really thankful).

Oddly enough, on Thursday night, I began to notice some wetness in my right armpit, where the drain was inserted. I brushed it off, thinking it was sweat. Friday morning, I got up and got changed (I would say "got dressed", but at this point, I was still living 24/7 in pajamas with button down tops). Within half an hour, my armpit was soaked. Dr Borah, my plastic surgeon is in charge of my post-op care, so I called his office. He was out, so they paged the on-call dr. He told me that the drains were likely getting blocked, as blood coagulated in the tubing (gross). He instructed me to "milk" the drain to clear it out, which I did successfully. However, now the bulb at the base of the tubing wouldn't hold any vacuum (you squeeze the bulb before closing it, in order to create a vacuum, which sucks the excess lymphatic fluid out and collects it in the bulb -- without the vacuum, you basically have a worthless tube hanging out of your body, creating an opportunity for infection).... I called the dr again and he told me to just watch it for redness or increased pain and he refilled my antibiotics prescription. It was about this time that I started getting sick from the antibiotics.

By Saturday, I just couldn't deal. I called Dr Borah's line again. After waiting an hour for the oncall dr to call, the answering service called me back. It turned out that Dr Borah was out of town for the weekend. I knew that if Dr Dultz was around, she would pull the drains and end my suffering at once... but I didn't want Dr Borah to be offended... but now, I had the perfect excuse. I called her up and sure enough, she was on call. She offered to meet me in the office that afternoon to take a look.

Abby drove me up to Princeton (only my 2nd time in the car and out of the house since coming home from the hospital). Dr Dultz took me back into the exam room to take a peak. She told me that she was going to pull the right drain (the leaky one) since it wasn't doing anything. I prepared for the pain (if you remember, my first drain removal "smarted" quite a bit!). Dr Dultz looked at my grimace and told me not to worry... "Dr Borah uses a different kind of drain than she does"... sure... good story! I grit my teeth and waited. Pop. She pulled out the tube... with no pain... it was just the tube inside my armpit... no big plastic anchor! Nice. The tube had practically been pulled out itself, which was why it was leaking everywhere and not holding suction.

At this point, I thought about the fact that I hadn't showered in 10 days... and I realized that if I got Dr Dultz to pull the left drain, I'd be "zest-fully" clean by the next afternoon! My left drain had also slowed down enough that she gave me the ok and pulled that one out too (to give you a comparison, the left drain had ~2 inches of tubing inside my skin, while the right drain had less than 1/2 an inch). She asked me to take the antibiotics for one more day and then I could shower! Yay!

I choked down 4 more keflex, knowing that they were making me disgustingly ill, kept pounding gatorade to ward off dehydration and hoped for the best.

Sunday afternoon, I dragged myself upstairs and turned on the water. Stepping into the shower, I let the warm water run over my head (fortunately, I didn't have to deal with disgusting hair after 10 days of no shower!)... it felt so good. I was finally clean. A shower has never felt so good. Never.

Saturday, January 7, 2006

I WON'T LIE....

posted Saturday, 7 January 2006

I wanted to quickly update you all and let you know that I am now back at home, resting comfortably (ok - maybe not that comfortably, but... what can you do?) According to Dr Dultz, the surgery went very well - I'm not really sure what that means, but I suppose it's a good thing, right? Mom and Dad came out Tuesday night, and took me to the hospital on Wednesday. As Nancy mentioned, the surgery lasted about 5 1/2 hours. I don't really remember much about the recovery room, until they were ready to move me to my room... and even then, I only have cloudy memories... being in the elevator, rolling into my room, where they said - look - you already have flowers here waiting for you (thanks susie & jaeger!), mom and dad finally finding me (nobody told them they were moving me to a room)... then the painful memories.... trying to help the nurses get the was of blankets out from under me (they wanted me to roll over onto my side, which seemed like a bad idea... and was proven to be a bad idea), trying to get up to go the bathroom, not being able to go to the bathroom (awesome), trying to get comfortable to sleep (easier said than done), just to have doctors and nurses waking me up every ten minutes... good times!

Thursday too was a bit of a blur. Mom and dad had gotten a flat tire on their way home from the hospital on Wed night and didn't get home until very late... therefore, didn't get to the hospital until mid-morning. My cell phone had died and I was going a little (understatement) stir-crazy sitting in the room alone. I finally figured out how to get the tv turned on... but it made me a bit nauseous, so that didn't really keep me entertained. Next, I had them turn on my phone, and I started making phone calls to the few people for whom I had memorized phone numbers - basically, that included Nancy, Jaeger and my work friends (whom I could find extensions from the front desk!). Vanita was at her desk and she offered to come over and keep me company, so finally I could relax a little bit! My folks arrived shortly thereafter, and I finally felt some of the anxiety dissipate. I had been extremely thirsty, but couldn't really reach up to the bedside table to get the glass of juice that was sitting there, and the nurses were incredibly busy so it seemed ridiculous to page them to assist me with a sip of juice. Once my visitors were there, I was well hydrated though!

When lunch arrived, I attempted to eat some jello and ice cream, but my stomach wasn't feeling great. If you'll remember, I had gotten fairly sick from the anesthesia the first time around, and once the zofran wore off, I had similar experiences this time too. As I was finally purging all the cranberry juice, jello and ice cream (I felt a lot better afterwards!), my friend Annette showed up (Annette was the woman that I met at Bob Evans, back at the beginning of this whole journey...) The box of chocolates she brought was definitely enjoyed by all my visitors (and by me... once I moved to solid foods!) My mom didn't recognize her at first because her thick, curly hair looked so fantastic! Shortly thereafter, Mike showed up for a quick visit before he headed down to the Philadelphia airport. These two visitors meant a lot to me, especially since they both drove so far to see me and I was surprised at just how comforting it was to see them.

While Annette and Mike were there, I had pushed the button on my PCA morphine machine (which was always stressful because I wanted the morphine, but I didn't want to press the button too often because I didn't want them to think I was a whimp), only to immediately feel burning in my hand where my IV was... suddenly, my hand began to swell. This did not seem right. I paged the nurse, who came in and turned off the machine, exclaiming that my IV had infiltrated and that she would be back in 10 minutes. What! I couldn't believe that I had to sit there in pain for 10 minutes, as my hand continued to swell. Gosh - looking back, I felt pretty bad for the nurses there - what a tough job and clearly, there was more work than they could easily handle. She came back and pulled out my IV... now the trick would be to get another IV started... with my fried veins (from the chemo), that would be no easy task. Another nurse was called in and the two of them worked at my arm for a while and finally got an IV started in the underside of my forearm. At this point, I had been off the morphine for over an hour, so we decided to just switch to oral percocet. Step one in getting home was accomplished.

Around 4pm, my body was finally turning it's systems back on, as I emerged triumphantly from the bathroom exclaiming "I went pee-pee in the potty!!!" The nurses all cheered for me. Ahhh... the wonder of small victories!

Later that evening, Nancy and Heather stopped by. Heather offered to stay overnight with me on Thursday, and once we had convinced the nurse that she was my sister, they had no problems with that! My dinner tray arrived and by this time, I was famished! I hadn't really eaten anything solid in close to 48 hourse, so I was ready. I took a look at my tray and realized that they brought me a liquid dinner - soup, jello & ice cream. Yuk! Mom tracked down the nurse and requested a real meal... which was easier said than done! At around 7pm, the unit secretary came in with a tray that she had scavenged from the kitchen (which was closed at the time). It was a hodge podge of food, but I didn't care. The bean salad and fruit plate hit the spot... as did the cheese quesadilla that Heather went and got from Mexican Village.


Speaking of Mexican Village... for some reason, I was adament that my parents go and eat at Mexican Village during my surgery... I gave them directions to this little shack of a restaurant, which is right near the hospital. Easily the best mexican food in the vicinity, M Village has been the site of many farewell lunches and fun group dinners, where they will provide a big tub of ice to chill the byo coronas (or other beverage of choice). In fact, as they were wheeling me down to the OR, I looked up off the gurney and repeated one last time... "please... go to Mexican Village and get something to eat". They did actually listen to me and I am fairly certain that they were glad they did!


Around 9:30, my visitors departed, except for sister Heather. She settled in to do some work, but had a problem with her computer. Responding to a call for tech support, Tina stopped by the hospital for a quick visit & to give Heather a new laptop... We even managed to secure a high speed internet connection, so Heaton was productive and working as I drifted off to sleep. It was extremely comforting to have her there. For example, when the interns came in at 5am and they pulled down my blankets and gown to check the incisions... and then left, without pulling them back up (what!?), Heather came over and helped me get situated again. My only thought is that the interns were uncomfortable in the situation, since they were close to my age (?) because I couldn't believe that they would just be that inconsiderate.

Friday morning, Dr Dultz stopped back by. She checked things out and said that I should try to go home that day, if I was feeling up to it. I ate well at breakfast and began building some strength. Mom and Dad came by again, on their way out of town. Jim and Vanita visited in the late afternoon. Vanita was my ride home. I had ordered Palak Paneer off the vegetarian menu (which was funny, since the first item on the vegetarian menu was "broth - chicken or beef"... weird...) and was fairly excited for lunch. So, we waited until after lunch to sign out and head home.

The ride home seemed to take forever. Every little bump in the road hurt. By the time I got home, I was exhausted... funny just how much surgery takes out of you. Vanita set me up on the couch and headed to Walgreens to drop off my prescriptions. After a nap, Charlene came by, to return Otis -- boy I missed that pup! It was amazing how perceptive he was, as he was extremely gentle with me.

After dinner, Bonny arrived - my nurse for the evening. I was extremely thankful for her care. She helped me bathe (though I couldn't get wet from the waste up, since I had drains hanging out of each armpit, to collect the fluid that would build up as a result of the surgery -- and I thought it was bad the first time, with one drain!). She fluffed my pillows, managed my medications and just handled me with kid gloves, in general. I was in pretty significant pain as I laid down to sleep - fearful that I had checked out of the hospital too early, she helped me relax and get comfortable. It wasn't until after Bonny left on Saturday that I realized the full extent of the work she had done while she was there. Not only did she take care of me... she mopped the floors and cleaned my bathroom - things I wouldn't have asked anybody to do, but was extremely thankful that she did them.

Sorry this entry took so long to get posted. I wrote the first two paragraphs shortly after arriving home from the hospital, but couldn't type for long, without getting sore. In fact, I couldn't really do much of anything without getting sore. I had, again, significantly under-estimated the amount of pain I would be in and the lack of strength that I would have (I couldn't even open my sliding glass door to let the dog out, much less pour myself a glass of juice). I am thankful for all the people who answered my calls for help (and especially those who went above and beyond that call to make me comfortable) in my first days after surgery. I know it is cliche, but I honestly can not imagine what I would have done without you.

All ready to go... waiting for





Just in case they try to use my "bad arm" for blood pressure or a needle (I can't do either in my left arm, due to the removal of my lymph nodes)



Pretty flowers that were waiting in my hospital room... (thanks Susie & Jaeger)



Back at home, sporting my surgical bra & drains...