Breakin' Free & Makin' Fanny Packs Cool

Surgery to remove the infection and deconstruct my early stage reconstruction was last Wednesday. My chest doesn't look much different from what it was a couple weeks ago, but it is much better looking than the swollen, red, infected version.
The tissue expanders are gone, feels very good - no more steel plate feeling in my chest or heavy weights when I recline or bend forward. The cadaever flesh is gone, not as noticeable but I don't get the occassional ripping feeling I had when I moved certain ways.
My undershirt is sagging and showing my crinkly wounds. My port line and my JP Drains (two little rubber grenades that have tubes that go into my chest and accumulate drainage) are pulling on my shirt and there's no cleavage to hold it up, but I've been used to that for 2 months and I'm fine with it. Just hope everyone else is fine with it if they accidentally get flashed my raisin chest.
The last week has been a little trying emotionally, but I have weathered the storm with more grace than I would have previously given myself credit for. I was under the impression that I would go home the day after surgery, Thursday, but the looks on the nurses' faces said a different story. I saw my Doc Thursday and he said sorry but we have to wait until the bacteria cultures come back on Friday and then you will go home, but it won't be until later in the day. Again the nurses' faces said that was not a sure bet.
Friday evening came and no culture results. We were waiting for the "Sensitivity Test" which is a petri dish where they grow my bacteria and see which antibiotics impede growth or kill the surrounding bacteria. Saturday morning the on-call plastic surgeon came in with a solemn face, he had the results, but he knew Pejo, my surgeon, had gotten my hopes up that I would be going home as soon as those results were in. That's not how it works, especially on the weekend and a holiday weekend to boot.
So we knew that my bacteria is MRSA, the super fun antibiotic resistant kind. But before you get too worried, please know that MRSA is everywhere and if you've recently spent time in a hospital, nursing home or infusion center, there's a high likelihood you are carrying MRSA in you right now. What I have is a Staph infection, but because it is anitbiotic resistant it's called MRSA and because I had foreign bodies, the tissue expanders, I had a prime environment for those critters to hide and multiply in an area where my body was struggling to fight them.
My immune system was depressed from the pneumonia and everything else going on with me and I started building some fluid around the expanders so the bacteria started congregating there and eventually made their way into the tissue. So by removing the expanders and the cadaever flesh we are taking out some prime real estate and by removing the skin and tissue in my body that was too infected to recover, I am now in a better position to fight back against the remaining bacteria along with the help of my new best friend, Vancomycin.
So Saturday morning the on call Dr had to convey the bad news that a) we had to wait until Monday morning for the infectious disease doc to write the script for what I would be on to continue this fight and b) we would have to wait until after the weekend to finish getting home care set up. So a few tears later I resigned myself to finishing out the week in room 653 and continuing to listen to Mark holler if someone came into his room at a time he considered inappropriate.
I was able to have more time to accept visitors, good news, right? Ladies from hours away now had the opportunity to catch up with me since I was a caged animal. Visits sandwiched a few tears here and there about missing my kiddos and feeling like maybe the rest of my life would be plagued by the feeling of being a sicko, always fighting one thing or another. But those tears were pretty scattered and I had fun getting to know all of my lovely aides and nurses, except for one who weirded me out one night.
The nurses had been putting in IV's all week to administer the bags and bags of antibiotics and by Thursday or Friday I had 2 IV lines going in my arm at the same time and I had 2 spots where they had removed previously used IV's because the Vanco had worn out my veins.
Friday afternoon I was visiting and having a good time, starting to ignore some pain and dampness at the IV near my elbow. My guests left and I called the nurse, damn it hurt and now there were drops of fluid coming out. They pulled that IV and started using the one at the base of my thumb (not a comfy IV to begin with) and by that night my arm was painful.
The IV site in my hand began to get painful, but they flushed it and it felt better, for a while.Numerous times the nurses had talked about accessing my port and had contacted my Oncologist to see if they approved of this use of my port/central line. It seemed like someone would mention accessing my port and then they would decide to finish using the current IV or that we didn't know how long I would be on the vanco.
Saturday morning brought more pain in my hand and expanding redness in my arm/hand so my nurse, pissed that no one had accessed my port the day before, accessed my port and we never looked back. But Saturday night brought more and more pain, swelling, redness, warmth in my arm/hand so they watched me for Red Man syndrome but figured it was IV infiltration and phlebitis and spoke to the doc regularly about it while we iced it all night long, thanks Andrea for taking care of me that night!
Sunday morning the Doc looked at it and sent me for an ultrasound, it was phlebitis with a small blood clot, but not a deep one so not much concern.
Kiddos got to spend a lengthier amount of time with me Sunday which was really nice, but really hard to see their tired little faces leave and watch the car pull out of the parking lot (I have a bird's eye view of the main lot). Tears and a quiet evening, the first one without Ben hanging out until bedtime. I had made promises of seeing them at home on Monday. Again Andrea to the rescue, listening to me vent about missing my kiddos amidst some mild blubbering.
Monday brought hopes of coming home, but fears that it would again fall apart. And sure enough the Case Manager came in around 11 to explain that they had the script for my meds and home care, but that the shipment of home meds coming out of Syracuse had no way of making it on the truck for Monday delivery, nor did we have time to get the Home Care up and running...
Later I met the home care nurse and she explained that the meds/devices get made and shipped directly out of Syracuse and their truck route wouldn't be in Candor until 1pm Tuesday, so I got to spend one more night with my homies and Mark.
The kids got to come hang again Monday night and have another ginger ale party in my room watching cartoons and playing Dr. This time I still shed a tear when they left, but not as bad.
Tuesday morning my hallway smelled like poop and the skies were gray, but I was happy. I took my morning stroll around the small Memorial 6 section of BGH I had resided in for the last 10 days and mentioned to the Nurse Manager that I would be able to help her with performance reviews anytime, she agreed I should come back for that.
Some paperwork and a few vials of blood and I was out the door. Good bye room 653, now named in honor of me, goodbye Mark who sounds like a jerk, but the nurses say is a fuzzy teddy bear underneath it all. Four months in the hospital with little hope of making it home on your own again would make anyone a little angry. Goodbye tattooed guy who wandered the halls aimlessly like me, goodbye little old lady across the hall who was excited to finally be walking after months and months, but too weak to return home. Goodbye to the aide who had a freak out in my room one night because she thought the psych ward patients were breaking in (she ran out of the room to get help and then told me to ring my bell if I heard more banging - sweet.) Goodbye to a whole bunch of awesome caretakers, wonderful women and one cool dude named Victory. Goodbye to Flo from the ER who got an IV in an overly swollen hand arm and by talking with Ben about their mutual love of abcesses found out she was someone who helped our dear friends Aaron and Bridgett shortly before Aaron passed. Good people!
They actually let me walk out Tuesday morning, I guess they thought it was a slap in the face to make me get in a wheelchair after days of pacing floor 6. After looking up at my window on the way out of the parking lot, I immediately started analyzing Ben's driving to which he said "I made it back and forth to Binghamton for the last 10 days by myself, don't think I need your help."
We stopped at our building project on the way home and I got to see Joel and Roy, then we saw B and Keith at the farm, it's funny how excited I was to see these goobers!

Fanny Packs are Cool

My home care nurse arrived later and taught me how to connect my meds, a clear beach ball with compressed air that provides a continuous 24 hour release, to my already accessed port. She also brought me a plain black fanny pack that needs some bedazzling because I will be wearing this high fashion device 24/7 for the next six weeks.
Home is wonderful, busy but wonderful. Kids are great, Ben is a little overwhelmed, I'm feeling wonderful.
Started reading "The Book of Joy" and so far it's really speaking to me, thanks Cancer Gina! It's about finding happiness and the book is basically just a discussion between the Dalai Lama and Desmond Tutu about joy and happiness, especially in the face of heartache and tragedy. It really makes sense that too often we wait for external stimuli to bring happiness to us instead of approaching life with joy even in the face of awful situations, thus creating long lasting happiness for ourselves no matter what. Gratitude/prayer can play a big role in the way you approach the world, but taking ownership of your own inner peace and your own level of joy is important, whether you are exiled from your homeland or stuck in a hospital for 10 days. I freaking love life, doesn't mean I don't get depressed sometimes, but I can take ownership of those feelings and quit hoping someone is going to magically fix those for me. (By saying this I am not belittling mental health issues, those are real and very beyond your control)
I keep saying "it is, what it is" to people when I talk about the next roadblock or task in this journey, and it's not that I take it lightly, I just have to keep plugging along and not wallowing (for too long anyway) or else what good can come from any of this? Everyone has shit, in the words of a good friend of mine.
Anyway, I'll start radiation in a couple of months and probably won't every take steps to get boobs back, I'd rather get on with life. Rock your fanny pack! Anyone own a bedazzler??

See mom no boobs!

Swollen Craisin Boobs

An update on the last 2 months....
Waking up from a double mastectomy+reconstruction = run over by a dump truck. My breast surgeon had warned me about feeling like I had been run over by a truck and then a day later feeling like it was merely a car, but I wasn't prepared. I would argue it was a dump truck and a day later an unloaded dump truck and maybe 4 days later a car.
My Breast Surgeon, Dr Anne, doesn't allow visitors, laughing, phone calls, texting, TV, nothing, just lay there. Some of the nurses poo-poo'd this, but I am in total agreement, no friggin way could I have handled talking to visitors or focusing on anything other than being still and sleeping. I had a male nurse (there seems to be an abundance of them at Lourdes) who tried to be funny, it was his way of lifting my spirits, but I would have hit him if I could have because smiling made my chest hurt, burn, pull.
You might be confused, it's like a boob job right? Not in any way shape or form! A boob job involves lifting the breast tissue and sticking an implant in under the ducts/tissue/fat. A mastectomy involves scraping all of those ducts/tissue/fat out and in my case cutting out the nipples and areollas. The reconstruction part is where the exponential amount of pain comes in. The layer of muscle under your now non-existent boobs is scraped off your rib cage and a tissue expander, which is like a plastic pillow that is deflated, is placed under the muscle. Then a sling of either denatured pig flesh, or cadaver in my case, is sewn in from your armpit to your sternum to serve as an internal bra for the tissue expanders or future implants.
My mastectomy included removal of the entire packet of lymph nodes on the left side because we knew 3 nodes had already tested positive for cancer. Some people will have a sentinel node biopsy to potentially avoid taking the whole packet and increasing the risks of lymphodema in that arm. My pathology report showed 5 nodes in that packet and all 5 still had signs of cancer.
After 2 nights in the hospital I was able to go home, sleep in a recliner and occasionally move to a different chair with about 6 pillows wherever I was to keep my arms propped just so. For a while I couldn't reach my face to push up my glasses, wipe my own butt or pull up my own pants. Ben and my Mom were busy with me and the kids, mornings meant getting me to the bathroom and then getting me situated so the kids could get ready for school. If I had an early doctor appointment  it took one adult helping me get ready and one getting the kids ready for school.
Slowly that got better, mixed in with some crazy emotions when I got that initial pathology report about my lymph nodes, I truly thought I was dying, maybe a year, maybe a couple, but I thought it had been growing for the whole time I was being "treated".
My initial biopsy showed Estrogen+, Progesterone +, Her2+ tumor which is aggressive but also has a lot of treatment options. The pathology after surgery showed Est+(100%)/Pro+/Her2 negative, which had us worried that the initial biopsy might have been misdiagnosed and with the Her2 negative I may have been a better candidate for sugery before chemo becuase that doesn't respond well to chemo. We freaked, I quit whining about having no boobs and realized that was so insignificant in the big picture. I couldn't wrap my brain around what life for my family was going to look like.
Then my oncologist called me late one night and talked me down off the ledge, he explained that there can be different types of cells within the same tumor and there was good news in that pathology report. We had killed all the triple positive cancer with the chemo and that's the aggressive one, so kuddos to us for acing that test. Second, since the 100% Estrogen positive tumor remaining feeds off of estrogen we know how to control estrogen and had shut off my ovaries months earlier.
I started feeling better, but then had a flu-like reaction to a dose of Zometa (to help strengthen my bones against the cancer) and that set me back for nearly a week. Later we are questioning if this was truly a reaction or the first indication I was coming down with pneumonia.
A review of all my pathology slides by Roswell Park showed that the cancer had not spread beyond my lymph nodes, but that there was a possible spot where the tumor was too close to my skin so I went back into the OR on October 16th for a skin excision which took another 6cm of skin up from where my nipple had been.
The pathology for that skin showed it was actually free of cancer. Yay!
Recovery continued and I didn't need constant help with the kids anymore, but about 5 weeks out from the original surgery I started getting more tired and some swelling at the end of the day. I wasn't thinking it was anything other than me doing too much. Then Saturday the 28th I just had to sit back and watch the kids carve pumpkins because I was too tired, then Sunday I was achy everywhere and had no desire to move (I blamed my oral chemo, Arimidex), but my mid afternoon I was feverish.
I love Dr. Anne, she has no answering service, we call the hospital operator and tell them we need to reach her and she calls us back within minutes. She gives explicit instructions and tells you when you should think about calling her again. So Sunday she told us to call back if my fever got over 101, which it did at 9:30 that night and I had some minor swelling on the right side of my chest so she instructed us to march to the ER and to ask for a whole battery of tests and call her if they have any questions.
11pm-3am in the Lourdes ER = a pneumonia diagnosis and sent home after some IV antibiotics and fluids. Again DR. Anne was talking to the ER doc in the early morning hours even though I'm certain she had surgery early the next morning.
I started feeling better by Tuesday and saw Dr Anne again and she did an ultrasound of the swelling to see if it was in the tissue or not, looked good, so more waiting and watching to see if the pneumonia antibiotic would keep everything heading in the right direction. Thursday there was some light redness and then by Friday morning it had worsened and Dr Anne's nurse set me up to see Dr Pejo the plastic surgeon before the weekend.
Dr Pejo outlined my redness and told me if it spread drastically beyond those lines to call. Each evening I was getting warm about an hour before my antibiotic but not a full fledged fever.
By Saturday evening I just felt off. Sunday morning I woke up to pain on my right side when I took more than a teeny tiny breathe. So we headed to the ER and called the on-call DR in Pejo's office, still thinking the redness hadn't spread too much. She asked us to go to Wilson Hospital or Binghamton General (her preference) so that Dr. Pejo and herself would have floor privileges to check in on me. Then we called Dr Anne and she told me to go wherever I was most comfortable and probably Wilson because they see more acute problems. I felt more comfortable going to Wilson than General because I've never been to General's ER, so off to Wilson we went, with strict instructions from Dr Anne to get a CT scan.
After a couple of hours, X-ray, EKG, CT plus the standard blood and urine they decided my lungs were clear and there was no concern about a blood clot. When the ER Doc looked at my wounds they were significantly more red than they had been only hours before.Why the breathing pain? The infection was causing enough swelling and inflammation to make breathing uncomfortable and actually I could walk around and be comfortable, but the minute I sat or reclined it became painful to breathe.
As the ER doc finished giving me more IV antibiotics and was getting ready to send me home with more meds she was also waiting for a return phone call from the on-call Plastic Surgeon, Dr. Adepoju, and bam Dr Adepoju just showed up. She was in the area and decided to swing by to see it for herself.
Immediately she said she wanted me admitted and that it was a strong possibility that the tissue expanders would need to be removed so I was supposed to start fasting at midnight. I also needed to be transferred to Binghamton General where their offices are so they could check in on me. I got teary-eyed and she was extremely gentle and kind, understanding that my sadness was due to continually being separated from my kids and the fear that might be causing them.
We discussed my desire to be rid of the tissue expanders and go "flat" and she assured me that it's not a decision to jump into, but rather try to ride through these storms and see how I feel on the other side. I felt much more comfortable having that conversation with her than Dr. Pejo.
I got my first ambulance ride!! It was hugely frustrating when I was perfectly fine going there in my own car, but oh well.
Monday my wounds were much less red than Sunday so they decided to wait and see, mostly because Dr. Pejo wanted to be absolutely sure my pneumonia was gone before he thought about taking me to the OR and he wanted to have me see the Infectious Disease DR that visits all the local hospitals acting as a detective in these sagas of infection. Tuesday the redness was no better and it was a long day of waiting to see Dr Pejo and the infectious disease Dr. I walked laps, I read, chatted with my nurse, listened to the jerk next door yell at aides and nurses and had a visit from Quinn (the boys had dinner with me Monday night.)
Dr Pejo came and we were in total agreement that the tissue expanders need to come out and he would leave it up to his office to fit me in today (wednesday) in the OR. He stole the cashews out of my mixed nuts and left.
Then Dr Fenlon, the infectious disease doc, came to visit. She is like CSI for infections and we talked about everything that has happened, plus questions about my life that I wouldn't have thought to connect with my current situation. She was also in agreement that my expanders have to come out today and that Pejo would be removing as much tissue and muscle as needed to get my body to turn the fight around. She was very impressed with how hard my body is fighting with all that it has already been through. She also asked that I find something to keep me busy, reading fun books(nothing dark), doing something like knitting ( I'm so uncrafty) or yoga...so this morning I am writing and instead of just doing my minor exercises in my room I held some stretching poses. I can't think of a hand craft I can do that I can tolerate...
Anyhow, I'm fasting and waiting. Waiting to get my raisin boobs back and get this hideous swelling gone. As hard as it was to look at those shriveled pillows of skin in those first few days, i'm ready to be rid of this mutilated swelling and get back to life instead of focusing on babying these foobs (fake boobs) along. They might look more like craisins with all the redness, but you get the idea.
I've had tears here and there and a meltdown yesterday when I realized this was going to delay radiation by 6-8 weeks, but I'm ready. Ready to get these foreign bodies OUT! Ready to be able to cuddle with my kiddos daily again. Ready to let my Mom and Ben get back to life that doesn't revolve totally around me. Ready to be rid of Mark as my next door neighbor, who likes to call nurses idiots. Ready to keep working to keep cancer away, instead of fighting infections.
This was a freaking long post, sorry. Maybe while I'm home doing IV antibiotics, I'll spend some time filling in the gaps of this post...
Thanks for the food and the visits and the love!
-K
I'm not proof reading this one, time to do some crocheting...NOT!