Blogging from the hospital......

If you don’t know where you are going, any road will get you there.  – Lewis Carroll

All of this cancer stuff is just a big, huge complete 100% drag right now.  (I would like to use MUCH stronger adjectives than that, but it wouldn’t be appropriate).  I’m just so tired of it all, quite often wonder if I made the right decision in going the “conventional route,” and quite often wonder if I can make it to the end of treatment.

As you all know, I try really, really hard to be positive and upbeat all the time…..or at least MOST of the time.  Well, I’m sorry, there just is no positive attitude today.  Must’ve forgotten to put it in my overnight bag – hopefully it’s still in the RV somewhere cuz I’m gonna need it REAL soon! 

I ended up in the hospital.  I went back to see the oncologist on Friday morning.  My fever had broken, which was a good thing, and I was feeling a little bit better, but he was still really concerned about whatever infection I seem to have picked up due to my weakened, compromised, neutropenic (my white blood count was slightly above 0 at 0.77) state.  He said there was a 50/50 chance I would be okay going home and continuing the oral antibiotics, but he wasn’t comfortable with those odds.  I told him I hoped the oral antibiotics weren’t going to go to waste because they cost me $300!  He was shocked and said if he had known that, and that I had to pay for them, he would’ve just put me in the hospital the day before and saved me the money.  But he also said I’ll be taking ‘em when I get out of the hospital….so they won’t go to waste.  Was he just trying to appease me? 

So off we trudged to the hospital, after stopping at home for a few things.  We got all registered, and the woman said, “You’ll be in room 550, bed 2.”  I was so disappointed to hear that I wouldn’t have my own room.  What if I got a roommate who liked the TV blaring all night??  Or somebody who snored obnoxiously??  Or somebody who had 100 visitors all day long??  All sorts of dreadful thoughts were going through my mind.  But we were pleasantly surprised when we entered the room – there is no bed 1 in here!  How could I be so lucky?!  There is actually a spot where they could put another bed, but they’ve replaced it with 2 love seats that actually pull out into sleeper beds.  Kenny could spend the night……if we didn’t have the dogs.  Then again, why would he want to spend the night in a depressing hospital room where they bother you all night long?  I wouldn’t even want him to do it.  It’s enough torture for one of us to be here.  The nurse also told me that in my neutropenic state, they would never put me with a roommate – too much risk for germs, disease, illness, etc. 

So yesterday, after I got settled in my “new quarters,” they kept coming in all afternoon for various things – health history, blood draws (I’ll tell you more about that later), urinalysis, to take me for a chest x-ray, etc. etc.  They also came in and explained how to use the TV, which has regular TV, movies, games to play, relaxation/spiritual videos (maybe I need to watch some of those?!), and they told me how to order room service.  There’s a menu in the room, you pick any items you want off the menu, dial the number on the phone and tell them what you want and what time you want it.  I thought it was pretty cool until I called down to place my order for a grilled chicken salad and some black beans and rice.  “Sorry, Ms. Carpenter.  You’re on a neutropenic diet and can’t have any fruits or uncooked vegetables.  No salad.”  Wow!  So I switched to chicken stir-fry, which was pretty lousy.  It’s funny because this hospital used to be known for its great food.  In fact, several years ago, there was an article in the local paper about the food being so excellent that the locals would often go out to dinner at the hospital.  Now that I’ve been here for a little over 24 hours and have had a few meals, I can tell you they weren’t eating the same food the patients are eating.  Maybe the food is really great in the public dining area……or maybe that was a true story years ago but isn’t true now.  The food I’ve been eating is definitely nothing to rave about.

I’m quite decorated with beautiful colored bands.  The bright pink one on the left wrist says “Limb Alert,” which means no needles or blood pressure on left arm (due to the lymph node removal and possibility of lymphedema).  The bright yellow one on the right arm says “Fall risk,” which means, because of my weakened state, I’m supposed to call for assistance before getting out of bed, going to the bathroom, etc.  Well, the nurse saw me walk around and said I was fine and didn’t have to call all the time if I didn’t want to but to call if I felt dizzy or felt like I needed help.  The bright green band says “Isolation.”  This means I’m in “isolation” due to the neutropenia.  I can still have visitors, but everyone who enters the room must wash his/her hands upon entry and then wear a face mask – to cut down on the spread of germs.  If I go out into the hall and take a stroll, like Kenny and I did earlier, or go down to x-ray, etc., then I have to wear a face mask because of all the other people out there wandering around. 

Last night I was hoping for a good night’s sleep because they say “Rest is Best.”  Well, first of all, I can’t sleep without a white noise machine – something I forgot to bring.  It masks out all the other noises around and provides a calm, constant sound if a room is too quiet.  Can’t sleep in a room that’s too quiet.  No way.  The only noise last night was the beautiful (not) sound of my IV machine.  It does have a nice whirring noise, but about every 20 seconds there is a clunk – I guess when it’s opening up the line to let a drip through.  A non-constant sound like that is extremely annoying – maybe even worse than a really quite room.  SO, it took me quite awhile to get to sleep, even with a sleeping pill.  Then at 3:30 a.m., the IV machine started beeping – a bag needed to be changed.  At 4:30 a.m., the nurse came in to do a blood draw.  Would it have been possible to do it at 3:30 when I was already awake??  Then at 6:00, the doctor came in on his rounds.  I wish it had been my doctor, Dr. Sprawls, who is such a likeable guy, but it was another doctor in the practice – all business and not much personality.  But then again, it was 6:00 a.m.  Maybe he has more personality as the day wears on.  He didn’t say too much other than I didn’t have to be on the neutropenic diet anymore (yay!  grilled chicken salad tonight), that he would take a look at my blood work, and that he would keep me informed.  What does that mean?  Will I hear from him again today?  No.  Tomorrow I only have one thing to say to him – I need to get out of this place!  I will BEG him to let me out of here tomorrow.  In my compromised, weakened state, I should not be hanging out in a hospital filled with germs, infections, and diseases.  Couple of days of IV antibiotics and fluids and then send me home!

Now let’s talk about this whole neutropenia thing.  I think I’ve mentioned before that I got a Neulasta injection after every chemo session.  The purpose of the Neulasta injection is to boost up the white blood count that the poison (chemo) destroyed the day before, AND the billed charge for this injection is $5000!  The epitome of Big Pharma highway robbery.  Actually, I’m sure it’s not the epitome because I’m sure there are even worse charges, but I don’t even want to know about them because I’ll really get on my soap box then.  Anyway, needless to say, the $5000 injection failed to do its job this time for some reason.  Maybe my body just finally said, “Enough is enough already!” and couldn’t handle any more of the toxins that were being dumped into it.

Oh yeah, I was going to talk about the blood draws.  I have had 6 blood draws in the last 3 days!  Have I told you how much I love blood draws?!  When will this torture end?  The icing on the cake was this afternoon when they came in to do a blood draw – because I had just been informed that they had to transfuse me with 2 units of blood and 1 unit of platelets (which I was NOT happy to hear) – and they had to do a typing, etc.  The girl got out all her paraphernalia and starting going for my arm…..my poor, abused right arm.  I asked her, “Why can’t you do it from the Infuse-A-Port?”  And she said, “Because that’s all hooked up and everything.”  Stupid me listened to her and let her try the arm.  Gave her my usual, “I’m a tough draw.”  And she rammed the needle in there so hard I thought I was going to go through the roof.  And guess what?!  No blood flowed.  So she rolled the needle around a few times, poking, prodding….until I finally yelled, “This is torture!”  So she pulled it out and went to get the nurse to see if we could use the port to draw the blood.  And the nurse said, “Sure we can use the port.  No problem.”  And she got all the blood she needed…..piece of cake….in about 2 seconds.  Sure could have done without all that torture beforehand. 

I just had the platelets transfused.  Now I’m getting another antibiotic dose.  And then they’ll start the blood.  And then hopefully I can get some sleep!  Kenny brought the white noise machine, so hopefully it will be a better night.

  

Physically, I am feeling much, much better.  I feel like a human being again and actually feel pretty darn good.  Mentally, I have a little ways to go, but hopefully tomorrow will be a better day.  And hopefully they will let me out of this prison.  I’m terrified they won’t, which makes me feel very trapped.

Maybe my next entry will be a little more positive and upbeat.  Sorry for the negativity today.