Let me tell you why yesterday SUCKED

Hello there. This post is going to be a long one. First, it is long because I haven't posted in well over a week and you probably miss me (I can tell by all the comments you left on that last post! :P). And secondly because yesterday ended up being a very long and very sucky day for me and I need to write it all up to get it out of my system and let it go. So get comfy if you want to read this one.

I went in for chemo and came out with stitches and two huge bandages, a tube sticking out of my arm and much much pain. Here's what happened...

Most of you know I had a port put in my chest last year (December 14 actually). This port is a plastic circular thingy that tucked under my skin and then ran a tiny little tube up through my jugular vein. It was put in so that docs could administer chemo, take blood samples, etc on a regular basis without poking, prodding and obliterating the veins in my arms. You couldn't really see it, except for a bump on the right side of my breast bone when I'd wear a low-cut shirt or swimsuit.

Well, the place they put the port was closed with stitches and healed up with no problem within a couple of weeks of getting it put in. Getting used to a piece of round plastic under my skin and trying not to feel like an android took a little bit longer.

The suture site has always been red. It looks like irritated skin. But it rarely hurt (only hurt after they'd prick it for chemo, and then it'd only hurt a little bit for a day or two). Every time a new nurse looked at it, they'd always freak out and think it was infected. I'd always assure them that no, it did not hurt; it has always been this way; it's just that my body has a hard time completely healing since the chemo started; it's not oozing anything; I've not had fever either. It's always been JUST FINE!

Two months ago, a nurse wasn't convinced by my little schpeal so they shipped me off to Interventional Radiology Dept all the way on the other side of the hospital from the cancer clinic. They sent me there because IR put it in me, therefore everyone assumes it's their responsibility. Fine. That place sucks on the outside only because the dingbats at the reception desk never know if they're scratching their watches or winding their butts! But I digress. At the time, I finally got into an exam room and had an IR doc and nurse examine it. They concured with my conclusion that it was not infected at all and the little dots in the center were just tiny little scabs left behind after every prick of the needle for my weekly chemo and blood draws. My body just takes four or five times longer to heal from such things than a non-chemo'ed body does. I reported this back to the cancer center and they seemed satisfied.

Until last week...

Last Friday I went in for my normal CAKE and I got a new nurse (I always get Nicole the nice nurse to give me chemo and watch me during my infusions but a different nurse checks me in and takes my vitals, while yet another different nurse "accesses my port." That means they prick it with a tiny needle that stays in with a tube that comes out, much like an IV.). While I know this nurse meant well, she freaked out and dragged me into the bowels of the cancer center and made me wait in the hallway while she went into my doc's office with the hopes of retrieving her to take a look at it. Kane, too has seen my red port, as has Nurse Gari (fka Skippy) and everyone still agrees it's A-OK. But remember a few months ago I had a terrible encounter with Kane's Nurse Practitioner, we'll call her J? At that time I went in to have them evaluate my sore throat and make sure I didn't have strep but J spent about 30 minutes discussing my bowel habits and scribbling notes, never listening to my answers or taking me seriously as a knowledgeable patient. Since that visit, I've reported to both Kane and the president of the hospital that I REFUSE to ever visit with J again. She fills in for Kane when Kane's out of the office but I'd rather wait another day or two or see a complete stranger than meet with J. Well, last week when that nurse took me to have my doctor look at my port site, guess who she ended up dragging out of the office?!?! You got it...it was J. It all happened so fast and I didn't really think anything was going to come of it that I didn't bother refusing to consult with her on the matter.

Apparently, she had Nicole (my nice chemo nurse) send me home with a giant bottle of superduper doctor antiseptic stuff (called Hibiclense, looks like red flavored kool aid) and instructions to "dab it on the site twice a day, then cover with gauze and tape for one week...we'll see how it is when [I] come back in a week." Of course, since J never actually acknowledges the fact that patients are human beings with brains and questions and intelligence to actually understand such complex instructions, I knew I was unable to get clarification from her regarding the details of "dabbing it on" and "covering with gauze and tape." Do I rinse it off? Use antiseptic soap on it, too? Continue using neosporin? Nothing.

After two days of "dabbing it on" letting it dry and then "covering with gauze and tape," the site was twice as red and super irritated and stung a little bit when I touched it. Then I decided to rinse the Hibiclense off after application. A day after that, even more irritated, cherry red in color and super tender to the touch. By Thursday, it was turning yellow and looked and felt like the port was actually trying to push out through my skin! Honey made me an appointment with Interventional Radiology first thing Friday morning, before my 12:45 chemo appointment.

I.R. immediately confirmed that the site was infected (a doc squeezed it and something yellow and yucky came out), the port needed to be removed immediately, I needed a round of antibiotics and a PICC line put in through my arm (which acts like a port but it dangles outside of your skin...YUCK!). If and when the old port site heals and gets cleared of the infection, I can have a new one put in nearby or on the other side or something. That's several steps away from now so I don't have to decide just yet.

Well, Dr. G who did my chemoembo last month caught wind that I was in the hizouse and he came in to see me. He read the report and signed himself up to be the one to pull the port out. Bless him. We like him now. Even though it hurt me. It was to be a minor surgical procedure, as was the installation of the PICC line. They decided to do them "at the same time" but really it was one right after the other in the same operating room. Dr. G said they normally like to give some light sedation for the removal process but that would mean I'd have to hang out for four hours to clear my stomach "just in case." You know how it goes. He suggested that if I could tough out the discomfort of the lidocaine shots that'll numb up the area, then he could do it without the mild seditive and get it done within the hour. That sounded great to me!

The lidocaine shots hurt like no other pain I've felt before. It was sort of what I'd imagine being stung in the same spot by a million angry bees at one time would feel like. Repeatedly. In a circular motion around the port site. Then he had to cut out the infected skin in the area and deeply cleanse underneath the whole bit. The cutting out of infected skin hurt like the dickens too because he had to cut beyond the lidocaine perimeter a bit. He said he could only get two stitches in but the majority of the insicion area would have to heal as an open wound and was still going to leave one hell of a scar. I do not care about scars. I do care about not being infected by bacteria and such. He felt confident that he cut out all of the visible infection and we'll rely on the antibiotics to clear up the rest. As long as it doesn't show signs of further infection in the next couple of weeks, I should be in good shape.

Dr. G finished his task on me and then another doc stranger took over to install the PICC line into my arm. Click here for more information on PICC lines. Want a video? Thank you YouTube.

The PICC line was a weird, warm, pressure that I felt go in. It it a tiny purple tube that, with an Xray and ultrasound for guidance, threads up the inner side of the bicep, up and over the shoulder then down the chest and it ends just above the former port site. Serves the same purpose as the port but A) it's external so there's this freaky purple tube jobber dangling out of my arm now and B) since it is exposed, it needs to stay bandaged and never ever get it wet...never ever. That would cause more infection. Apparently, when the chemo nurses access it every week or so, they will clean up the area and apply new sticky covering to it, aka "dressing."

During the removal of the port I was fine. Happy go lucky. Making jokes left and right to cover up my fear and pain. Halfway through the PICC line insertion that all flushed away and I started to have a panic attack, right there on the table with my arm up and exposed and bleeding. Fortunately, I was able to calm myself down and avoid the full-blown attack. Once they were finished and had me delivered to the post op recovery room that I've grown oh so familiar with, I lost it. Bawled my eyes out. All of that crap was NOT what I had planned for the day. I was looking forward to a comfortable couple of hours getting chemo with my favorite nurse friend and chatting it up with MamaCarolyn. Instead I ended up poked and prodded and cut into and cut up and bleeding and bandaged and sore and hungry and scared. I don't do well in situations like that without Honey around. But he had to work and Mama was a great substitute. Regardless, I was sad and I just let it all out there in the middle of the recovery room. Once I gained my compsure again, I overheard a nearby patient was preparing to haul down the hallway to have his first port installed. So I excused myself into their conversation, apologized for eavesdropping (it's hard not to when there are so many people in such a small room - curtains are not sound-proof!), and then answered a few of their questions about the port. Yea, mine really freaked me out for a while after I got it but after a while I grew to love it! It never bothered me much except when my bra line would rub up on it too much and it would scream for some soothing lotion. Other than that it was a godsend, for real! So I guess as freaky as this PICC line is dangling out of my body, at least it's getting cold outside so I can hide it in my long sleeved shirts.

Anyway, after all was said and done, Mama brought me home and deposited me onto the sofa with my pain killers and some pudding that Jane left me (made with love). Honey brought home my antibiotic script and I gave him a full play-by-play of the days' events (he'd known about what was going on throughout the day, as I asked him to reschedule my chemo for me...Mama suggested this because she suspected I wouldn't feel much like getting chemo after those two procedures...boy was she ever right on!). Ate some soothing soup and poured myself into bed.

I'm already able to reduce the doseage of my backup pain meds today but my arm and shoulder feels tight and sore still. I'm just going to take it real easy this weekend. Then Monday afternoon I'll go in for chemo and let them clean up the PICC line site with new clean dressings.

My burn on the arm is still healing but looking good and devoid of infection.

I spent a long time yesterday being angry as all get out at NurseJ and her WONDERFUL suggestion of the Hibiclense routine. The site was JUST FINE, right as rain, perfect as pudding before that nurse freaked and J sent me home with half-assed instructions. That stuff just irritated the site so much that I think it tore open and developed the infection. it's all her fault. And yet, I know that it will do me absolutely no good to stay angry and want to throw things at her. So I've stuffed that anger away and refuse to think much about it now. I will, however bring it up when I see Dr. Kane in two weeks. Something must be done with Horrible J! HEY! that's her new nickname! Horrible J!

Well, at least something good came out of it all! ;)

P.S. You know how Honey and I are praying to the Universe that when we get to Houston next month and Dr. Curley looks at my new CT images down there, he'll get stoked and ready to book me an OR to remove the tumor? Well, yesterday, all the docs said we'd remove the port, install a picc line and then later, when everything's healed up, remove the picc line and put in a new port. In the midst of all the trauma I experienced yesterday, somehow I was able to see through the dark clouds and glimpsed a small speck of a silver lining: maybe I won't even NEED another port put in! Maybe the surgery will happen and I won't even need any more chemo! Reality tells me that I probably will need a bit more chemo even after resection, just to help clear up any lingering baddies. It also reminds me to prepare for the worst but expect the best. So all this talk of resection isn't actually set in stone. It's just what we're hoping will happen. So go on and hope along with us, won't you?! :)