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|
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!|