Dorothy: Oh, but anyway, Toto, we're home. Home! And this is my room, and you're all here. And I'm not gonna leave here ever, ever again, because I love you all, and - oh, Auntie Em - there's no place like home!
Big *sigh*. I am finally home. Got here Monday night after a hellish day. So I thought I was doing great recovering at Ashley's (except for one huge crying episode around midnight where I became the bad sleepover guest who wants to go home at midnight, remember those lame girls? ha ha ha). Anyway, poor Ashley she thought I was clinically depressed and told me to keep my chin up but really at the heart of it all I just missed my precious babies. I've never been away from them this long. Ever. I wanted to be able to smell Leo's head and kiss his chubby legs even if I can't hold him and be able to hear Abby talking and laughing and saying "Mommaaaaa!" That's all I really wanted.
Ah, so where was I. Sorry for the tangent. I woke up the next morning on Sunday with my right arm hurting. At first I thought it was just the iv poke but when Ashley helped remove my pajama top the crevice above my iv poke was red and hard. Infection. Ugh. Ashley speed dialed Dr. Hayden and took photos to send to her HIPAA protected email account.
Oh here I go on another tangent but Barbara Hayden is the most amazing doctor on the planet. She's the most wonderful hybrid of plastic surgeon, breast cancer support group, psychiatrist, internist and perfectionist. We heart her so much. Ashley (aka Dr. Pittman) has a huge crush on her (and so do I).
Dr. Hayden said it seemed like standard phlebitis, a vein infection caused from the bad IV. This shit is making me so mad at this point because it's not the mastectomy that is hard, it's all the other little stupid things that keep going wrong. I never should have removed my port. They could have used it to give me all those transfusions but noooooooo, I was just too happy to assume I was done. I should have known better. Keep your port in a little longer until you are done with everything so you know you don't need it for any little emergencies that may arise my fellow cancer warriors!!
So I went back on the rifampin and continued the other keflex antiobiotic, kept my arm elevated and applied constant warm compress. We also marked the area of redness with a sharpie to monitor the progress. By the end of the night my arm hurt like the dickens and the redness area had grown. I had my follow-up appointment scheduled with Dr. McAndrew that next morning so I would continue with that program unless I developed a fever above 100.5. Cancer patients in treatment know that anytime you get a fever above 100.5, which isn't too crazy for the average person, you must call your doctor immediately. Anyway, it was so hard to sleep that night but I persevered. That morning when I woke up I didn't want to bother Ashley (who had already stayed up late and woken up at 1AM to give me my medication plus she'd been frantically (and very lovingly) taking care of me the past week in and out of the hospital). She calls me "her picky patient" - - pffft. I mean, seriously what's the big deal if I call her in the room every couple of minutes to adjust my pillow an inch, scratch my nose or back or give me a sip of water or get me some food or any of my other very b.a.s.i.c requests...(ha ha ha, she's going to love that one). Frankly, she loves bossing and ordering me around and making me take my pills and stay in bed. I started calling her Annie from Misery. If I got out of bed she would get a sledge hammer and a cement block and well...you remember the movie. "He wouldn't get out of the cockamamie car?!?!" Mwah ha ha ha!!!
I wanted to let her sleep so I decided to make myself breakfast. Stupid idea. I did great making myself an egg and toast but really it was too much for me. I am really very fragile and weak right now and I don't know how to get my mind to understand and accept that fact. I'm working on it though. Anyway, Ashley ran down the stairs to yell at me but it was too late. I sat and ate but felt really very worn out and it was only 9 in the morning.
We get in the car and I'm stressed. I'm stressed because we might be late (and David was meeting us there and he's ALWAYS early but we were actually early so phew) but mostly I was stressed because I knew they would need to draw blood to do all those blood cultures and the analysis of my clotting issues. Where would they possibly take blood? Both arm were off limits in my opinion. Given the way I was feeling I was not in the mood to be my usual nice self. When I got there I checked in and said "Hi, I have an appointment with Philomena McAndrew in ten minutes, I had my mastectomy with complications Monday and I have phlebitis in my right arm so if I'm going to be kept waiting I am going to leave." Real serious poker face. Sure enough they got me in within the half hour and I never waited in the larger waiting room. Once we were led to a room, I grabbed David's hand and I just started balling. I told him I just can't take this anymore. So many little things going wrong. What is especially difficult is that so many people told me that compared to Chemo the mastectomy was a breeze. Wrong. At least for me. Major surgery is just that. Major. I have decided that for my own experience I am going to wait until I am done with everything then determine what was actually the "hard" part.
I gathered myself and waited for McAndrew. She came in and gave me her usual warm hug. She saw my arm and immediately started speed dialing other doctors. She ended up contacting the infectious disease doctor Robert Winters that I had seen before. She and he along with Alice Chung decided that I have to do IV antibiotics for seven days. I start panicking. Where are they going to get another IV started in my veins? So frustrating and scary. After that ordeal Philomena explains more about my tumor make-up from the pathology and explains our next course of treatment. She wants to start me on the Lupron shot (to shut down my ovaries) today. I tell her No Way. I am not going to do it. She understands I've been through too much recently and says we can skip it. Thank the Lord. And now for the IV issue...
We went back to the Chemo chairs, a place I never thought I'd be again and get settled into my chair by the window. My nurse today is Mary Lou, whom I love. I tell her all that is going on and she yells at me about not keeping my port. Well duh!! She says that she is going to get Jose, who is the most awesome medical technician to find an IV for me. But now there is some drama about whether or not I should get a PICC line installed. So they try to get me into Cedars to do that immediately but can't get me in until the next day at two. That means they will have to find an IV. Jose comes in to take charge and he ties the tourniquet on my arm so tight I am writhing in pain. I do deep meditative breathing. Long story short, Jose is the man. He got the IV started and took the requisite 18 vials (that is not an exaggeration) of blood for the cultures and what not, which I think is silly since it isn't all my blood right? 3.5 pints of it plus a bag of platelets are from someone else that I received only days prior. Guess it doesn't matter. Regardless after the blood analysis my hematocrit is at 30.5!! (My lowest was 15.9 and the normal healthy range is 42.0-52.0). That's some good news. Correction, great news!!
Shout out to all those blood donors out there!! YOU R O C K!!!
I stayed for another 2 hours getting the drip and finally was able to go home. While there I enjoyed a nice hour long snooze and woke myself up snoring. SO EMBARRASSING but thankfully at that moment I didn't notice anyone around!! The guy next to me was listening to sports radio about some NFL stuff and that put me to sleep in a New York minute. Apparently I've been going about the white noise and rain sound machines all wrong. I just need some KSPN 710 AM and I'm out like a light.
At Tower I talked with David and Ashley about missing home. While I slept they got a plan in gear to get me home, home that afternoon. Ashley went home to grab all my stuff and take it to the house for me. She is the most hospitable host, the hostess with the mostess, I have no idea how to thank her properly but I've got an idea up my sleeve. Ash, thanks for being such a huge blessing in my life.
I am now having home care of vancomyacin through the IV (2x per day on the 10's). A service delivered the goods to the house and a nurse came to show us how to do it last night around 9:30PM. I was worried David or my mom would be nervous. The nurse set it up for us that night and then around 11:30 David took off the medicine pod and flushed my IV. I was so proud and thankful. He usually doesn't do well around that kind of thing. We were both really worried about it but it turned out to be easy peasy. Piece of Cake. Easy as Pie. Hmmm, I think I might be hungry now. I have several more days of the antibiotics but instead of being poked again on a delicate arm I am going to St. John's Thursday morning to get a hickman line put in (can't do a PICC line because that goes in the arm and I don't have any free ones at the moment). That way if I need blood draws or anything else and since I am having possibly one or more surgeries and maybe it will come in handy. When I am done, done in August or September (or possibly much, much earlier) I will get it out. It was a debate I struggled with since, really, with the vanco all really need is one more poke for a second IV on Thursday but seriously, where will they be able to do it. My arm is bruised and swollen and there's the incision site from the removal of the port. It's an absolute mess.
Alright folks. I'm tired. It was so nice to get this out on digital paper and feel like I am reconnecting a little bit more with the world.
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