Tuesday, August 31, 2010

from ER to home--my 5 day journey

Here I am in the ER prior to isolation

Broad spectrum antibiotics--#2

Wonderful nurses! On my way to isolation upstairs. Hi Soprena!! (lots of love to you, I know you are reading this!)

Home away from home

My continual heart monitor

Immediate family visitors only--Kerri, Scott, Nick & Kristi

Scott, my hospital roommate

I thought I would share some hospital photos considering I was there for 5 days and all. I am working on a google image slideshow and will link it to my blog so you can click on it and see different aspects of my bout with cancer from photos pre-surgery to some from my plastic surgeon visit, etc...

Before my release from the hospital yesterday afternoon I had to have my port access removed. When they access my port they use a large needle that is bent (a Huber needle) then put a circular sponge-type thing full of antibiotics and then a clear dressing over it, it is attached to an IV line so they then just access the line like they would an IV in my hand. Anyway, they had to remove it so I could go home. My nurse said she couldn't do it so we waited for another nurse who supposedly knew what she was doing.....wrong. And let me tell you, even when I am at my oncologists office (where all they deal with is ports) it is very tender when they insert the needle or when they remove the needle--it really hurts. So this nurse tried 3 times and couldn't remove the needle!!! I finally asked if I could go to my oncologist (which is a one building over from the hospital) and just have them remove it. She said I could---if not she probably would have just continued--like when you are on fire and instead of water someone pee's on you to put it out--it gets the job done, just not how you would expect.

We went to my oncologist and the nurse did it on the first try with no complications..........thanks St. Francis for a bang-up job of continually fucking me over...I plan to write a letter (leaving expletives out) about the care I received, I am a little disappointed. There we some nurses (and the doctors) who were amazing and I felt like they were in my corner, but others were opponents to my care and it really shouldn't be that way.

Today I am feeling alright. I have a cold (watery eyes, sore throat and stuffy nose) I am not sure if its left over from the hospital stay or my bodies reaction to having have been so sick the past 5 days. My bones are extremely sore. When you get the white blood cell booster it makes the cells create rapidly (mine going from 500 to 4200) and that causes bone pain. My hair has continued to fall out, still not clumps, but more than normal in the shower and when I brush my hair. Looks like I will have to buzz it sooner than I thought. I have to admit that it felt unusual to not place my breakfast order and have it delivered to my room. To wake up to Archer (our beagle) baying like crazy rather than someone taking my vitals. To be able to use the bathroom without having to wheel in an IV pole. And to be able to have a full nights sleep without the lights being switched on, meds being put in my port, or someone waking me to ask if I had pooped since last shift change. Sweet, small, glorious victory to sleep through the night with my own pillows and in my bed, see my dogs and wake up next to Scott.

I am wondering where you put foundation when you have no hair...normally you put it to your hair line and then blend down from your chin.............do I blend back to the back of my neck...cover my whole head? Curious.

I danced a bit in the shower today...until I washed my hair and had it woven throughout my fingers, where it stayed after I rinsed and clogged the drain.....then I cried--a lot. I cried because I had to go to the hospital, because my counts were deathly low, because I felt mistreated, because it is unfair and unjust, because of what it put Scott through, because it made my mom worry from a distance for 5 days, because this was supposed to be my "good" week, because it was really scary and I felt I had to stay strong and stoic, because I have to have chemo again next week, because I have to lose my hair, because I hurt and because my heart is broken for the people who go through this alone and because I have cancer.

The cry/dance is unbelievable therapeutic and allows me to center enough just to get frustrated again. I am frustrated with the fact that there is no financial support through the state that I qualify for. I think that somehow I should be able to access money like I would for unemployment. Here I am, on a leave of absence for work for the length of my treatment, having the same amount of bills as we did before, plus all the medical bills and co-pays--adding to it my recent hospital stay and unable to receive funds. I am so thankful for all of the fundraising and donations we have received. You have no idea how heartfelt that thank-you is--from both Scott and I. We would be lost without all the financial, physical and emotional support. The network that has been created after my diagnosis is astounding and mind blowing. Knowing that I can write and express my frustrations and that they are being heard and acknowledged is the best therapy there is. It is keeping me sane--and giving Scott a much needed break as my sounding board.

So I am home safe. I have a physical therapy appointment today and then go again to get my counts checked on Friday. I then get them checked again on Monday, then if all is well I have my next round of chemo on Tuesday, a week from today.


  1. As always I love your blog...especially love the picture of you and the nurses that seem to be very happy they are in the picture, and the curiosity about where to put foundation. I say you don't need any damn foundation! Or maybe go for the mime look and paint a circle on your face. I have never been very good at that makeup stuff so you shouldn't actually take my advice. I love you lots!

  2. i began to laugh, out loud, at work, with the makeup comment. i say go for the lady gaga look, its always a good one. i also say you rock the mohawk for a few days before buzzing the head entirely. just a few ideas. stay strong my friend.