Saturday, August 15, 2009

Pissed doesn't even describe it! (and a wee update)

I was so angry last night, I was crying, and it takes a lot to make me cry any more. And by the way, this in a long ass post.

After sitting in the hospital for 3 days with no treatment starting other than a small bag of magnesium, the doctor sent John home until further notice.

Backtrack to last week. Last Thursday, John noticed an itchy spot on his neck. He was scratching at it. When I got to his place on Saturday, I noticed a red spot on his neck about the size of a quarter. So I put some Neosporin on it. We didn't think anything of it, other than to try to get rid of it.

I have to say this first. Everyone we dealt with has been very very nice and professional. We had no qualms with any of the staff, from the lady at Central Registration to the nurses and CNAs to the folks who deliver the meals.

So with that being said...

On Tuesday night, John got a call from the hospital, telling him to be there at 9 am on Wednesday for check-in. Shit. All the other times he had to be there, we'd get a call in late afternoon, saying come now. So our plan was to sleep in, go to breakfast, maybe see a matinee before going to the hospital (which takes an hour to get there). So those plans were shot to hell. Instead we have to get up at 6:30 to get ready and be there by 9 am.

Wednesday 9am. We check in at central check-in, and sit for nearly 2 hours, while they try to get a room for him. (we were told a room would be available) Now, because John is coming in for transplant, and by the end of the chemo treatment (6 days) his white blood cell count will be at zero, he needs to be in a single room because he'll be in isolation.

Near 11 am, the lady comes to tell us we're going to the Transition Unit until his room is ready. They can start his treatment in there, so no worries! The transition Unit is just off the ER, looks very much like an ER or a same-day surgery unit. We were there for 4 or 5 hours. They did all his blood work there. I swear I was surprised he had blood left in his body! They took about 10 vials of blood!

Sometime after 4 pm, they tell us he has a room on the 7th floor. There are 3 floors just for Cancer patients, with the 6th and 7th dedicated to transplant people, and they are all full, all the time! So we get up there with all John's stuff and they put him in a room with another patient. Uh, what about the isolation?
Oh, this is just temporary until a single opens up. You don't need it until you are Neutropenic (white cells at zero). We can start your chemo right here.

OK, fine. We get John all unpacked and settled in. The nurse practitioner comes in, asks 200 questions and asks John to remove his shirt so she can see his Pheresis catheter (where they'll give him his stem cells in a week.)
What's this? and she points to the red spot. Oh, it's just a bug bite we think. Hmmm...... Of course, they need to check it out. We must get to the bottom of this, so no chemo on Wednesday.

Thursday morning. We have to get a dermatologist to look at it. So they send an intern in (hours later) and she asks a ton of questions. Then the resident and the dermatologist comes in (about an hour or so later) and they look and ask the same questions. I think they were trying to fault me with putting the Neosporin on. HELLO!! Neosporin is a topical antibiotic! I probably prevented it from getting infected or more infected and it's gone down since I did it!

So they decide to do a biopsy on it and get the bottom of it because they have no idea what it is.
We later learn they suspect it might be shingles. (no, he had chicken pox as a kid) or maybe herpes (ew!). Frankly, we think it was a bug bite of some kind and John scratching it made it a little bit infected. So, no chemo on Thursday. They did, however, remove the picc line from his arm because there was a kink in the line and they can do the chemo and the transplant out of the catheter in his chest anyway. No need for 2 sets of these.

I needed to get a 15 day parking pass because it would only be about $4.65 a day instead of $10 a day to park. I couldn't get one until Friday when my partial support check cleared. Thank God I wasn't able to get it earlier because there are no refunds! And you would have heard my big mouth all over the hospital if I had purchased it and then they sent him home!

Friday morning. I have to drive to John's to get some stuff for him and bring it to the hospital. This is a pain in the ass because he lives 30 miles in the wrong direction, but I do it because I love him and he needs this stuff. When I get to his apartment, he sends me a message that they are talking about sending him home! WHAT????
They don't want to start the chemo while he has this thing on his neck because it could go through his whole body if it's not taking care of and he can treat it at home. shit.

But they want to wait until the dermatologist comes back and they get the results of the biopsy. My plan was to stop at the cashier's and buy my parking pass. I'm so glad John told me about the possibility of going home or I would've bought that friggin' pass. As it was, the 3 days of parking cost $29.

So I drive to the hospital and I'm very proud of myself for going all the back roads by myself and not getting lost! And I'm ornery. I don't want to watch any of the movies John had packed (they were all his dumb libertarian propaganda films or really old stuff from the 1930s or sci-fi/horror stuff) He's trying to play the "but I'm sick with cancer and in the hospital" card but I ain't buying it. And now I'm annoyed that he's playing free cell for 2 hours when I want to get online and pay my jc penneys charge. And I know it's the stress from all this crap talking (he has been like this for about 2 weeks), but I really want to get this process moving, and maybe he'll stop asking me to play games and watch movies that I really don't want to see. sigh. What I really want to do is just get stinking drunk.

Around 7 pm, the nurse practitioner comes in and tells John that they are sending him home with ointment and an antibiotic. The nurses are all apologizing to us because they know we're pissed. It's not their fault and we understand why they don't want to start the chemo until this is cleared up. But it's nearly cleared up now! John doesn't want to go home and have to start the process all over again! And the cancer is still there, maybe growing as we speak.

John has missed 4 days of work so far from this (and this doesn't include the days he was in for chemo in June and July. Those were missed weeks as well) and if he doesn't work, he doesn't get paid and he doesn't get sick days. They have his shifts covered for the next month and then some, so he's not needed at work right now. Thank God he has his military pension that will pay his rent and electric, but now we have to call any other creditors and hope they hold his accounts until he gets back to work sometime in October.

I have wasted a week's vacation. (well not really because we did spend a lot of time together) The plan was that I'd be there when he went through the chemo part of this transplant. Now when he goes in for the transplant, I won't be able to be there until after work each day. I do have another week or vacation coming to me, but I need that week for the time when John comes home from the hospital because he has to come to my house, because he can't be alone for several days (or weeks maybe).

So we were 2 really not happy campers driving home last night. It was a Murphy's Law kind of evening. I kept missing turns because I wasn't familiar with the route in the dark. I seriously wanted to get drunk last night, but the liquor stores were closed by the time we got home. Stupid PA has state controlled liquor stores, so we can't purchase liquor in the grocery stores like a lot of you lucky folks. John wanted to go to Wendy's for buffalo wings, but I wanted to go to Friendlys for the alternative to alcohol... ice cream! So we did both. I only got ice cream but John had ice cream cone followed by buffalo wings and a 1/2 lb. cheeseburger!

So that's where we stand right now. John is to call the doctor on Monday (I have my doubts that she exists because I have never seen her. John swears she does. When know more, I'll pass on the info to you!


I had to come home today to take Dani shopping for college and I was supposed to go back to John's. Well, Dani's car had broken down in NJ when she shopped with her dad and he had the car towed to a Pep Boys for repair. Today, I had to drive her to NJ to get the car.

I left John's house at 10 am. I sent him a text a few hours later that I had to take Dani to NJ to get her car. I asked him if he had eaten. He said no, he wasn't hungry. I called him at 6pm to let him know I was heading back to PA and I had to stop home for clothes. The man was still in bed, since 1 am the night before! He never ate, never took his meds. He was just sleeping away!

I told John I didn't want to go to his place if all he was going to do was sleep. At home I have cable tv, I have my computer with online access. So he said fine. So I didn't go. He gets like this when he's depressed. If I had gone there, I'd have been completely pissed off, and I wasn't about to drive another hour just to be pissed off.

I'll go over there tomorrow and drag his sorry ass out of bed and make him take his meds and eat. The man has diabetes and high blood pressure and he's supposed to be taking an antibiotic so he can get his ass back into the hospital and get this damned chemo going. He's allowed one day to feel sorry for himself and that day was today. Tomorrow he better buck up and get over himself. He has hard work to do and I'm not going to let him give up. I have too much invested in him for any other alternative. (gee? can you tell I'm pissed?)

8 am Sunday. He's still in bed. 30 hours. How can anyone sleep like that without anesthesia?
I don't know whether to be angry or scared. I do know if I drive over there (an hour) and he won't get up, I'm REALLY going to be pissed!

I spoke to him a little while ago. He's so worried about paying bills that he just doesn't want to think, so he sleeps. I'm heading over there now.


Joanne said...

Joanie -- I wish I could convey how very much I empathize with you. I have walked this road -- ok it was a bit different but there is so much similar.

Keep venting you have this wonderful forum - when I was going through this I had nothing -- just good friends -- lean on them too.

Maureen@IslandRoar said...

Oh, Joanie, this sucks so bad. I feel for you both. How could you not be so angry and upset!
This is such a tough road.
Try and hang in there.
We're thinking of you...

Peggy said...

Oh joanie, what an ordeal for you both. Being a cancer patient, I understand Johns wish to watch video's ...and being a women. I understand what you do for love!
I think you're wondefful, and I'll have another glass of red wine and toast you both!
Keep us updated, I may need your experience when I go through treatment!

Amy said...

How frustrating! Praying whatever it is clears up soon and he can get on with his treatment.

lisa said...

Welcoome to the healthcare system. It's crazy and you'll be charged major $$$ for the little time you spent in the room. Don't let John give up. At some point, though, you'll just have to demand that things get done. This needs to be over soon.

Hang in there.

Garret of Jim and Garret said...

Damn! I don't know what else to say!

♥ Braja said...

Oh boy, it never ends, does need to get over there and make sure John is ok....xx

Middle Aged Woman said...

I'm with Braja. Get that butt of his out of the bed. He can be cranky anywhere. Out of bed is the first step.

The Retired One said...

Deep breaths, Joanie, deep breaths.
Sometimes the hospitals and physicians can be soooo frustrating. I know, I am a retired RN.
You have the right to get answers.
And you have the right to see and talk to his physician, IN PERSON.
Otherwise, tell them you want to choose another physician who will pay attention to communicating with you.
I understand their fear regarding the sore and infection, but they should give you a timeframe and plan of care so you aren't surprised by this and therefore having to "guess" at the plan now.
I am so glad you have a hard shell and can kick some ass....and go ahead and need to let out frustration.
And get a bottle of wine.
Hang in will be in my thoughts.
Remember, the medical personel work for YOU. Also, every hospital has a patient advocate...ask to speak to them if anyone gives you any further problems there. They will make sure that things are communicated to you in a timely fashion from now on.

Not The Rockefellers said...

What could I do but hug you right now?

Peace - Rene

Ann's Rants said...

What a pile of crap for you guys. Frustration on top of frustration.

Sending hugs...

Sally's World said...

Oh Joanie, I'm so sorry you have to deal with this, sendign love and hugs, i wish i could do something to help!

Eternal Lizdom said...

That really sucks a lot.

But you know... making it through all of these trials and tribulations will make you guys so strong together. What a unit, what a pair, what a team!