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In-Hospitable

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Yep, I went back on Sunday.

On Tuesday night/Wednesday morning I had a little pukefest, so at a reasonable hour Kathy called the home health nurse (Julie) to tell her that I would be putting off that days chemo treatment. Good thing we called. No one have the home IV service had told Julie, so even though Kathy had waited till well after sunrise to call, she still woke Julie from a sound sleep.

Once we had that settled, we had fluids ordered, and I got re-hydrated via IV later that day. Oddly though, my urine was the color of black tea, and output was really low even with the extra infusion of fluids.

The nurse offered to work over the weekend, so we rescheduled chemo for Friday. Once it rolled around I was expecting the easy time I had the previous three sessions, but I was more miserable than usual, and nauseas all through Saturday and Sunday. Again, despite the constant infusion of fluids over three days, my urine was black tea. During this few days my stoma was more active than usual as well, and on Sunday its output had the color of clay.

Julie arrived on Sunday evening to disconnect me from the pump, and by this point I was pretty non-responsive. I felt miserable, did not want to move or talk, and definitely did not want to go to the hospital. Julie insisted, and Kathy was a stress bomb, so I finally agreed that they could call 911.

Julie made the call, as she was driving away from the house, with neither Kathy nor I knowing she left. Apparently this did not sit well with the dispatcher, who accused her of abandoning her patient, so Julie came back, telling us she told 911 that it was not an emergency.

Well, 911 apparently agreed. About 30 minutes later Julie called for a status update, and found out the call was never recorded. This time when she started to say it was not an emergency, both Kathy and I told her not to say that (maybe I should get a new nurse). This time the fire department guys were there in five minutes (along with a woman firefighter who was stunning! This girl would have been perfectly cast as a firefighter in a hollywood movie!). The usual guys were the ones who helped me get from my room to the street, and I was loaded into the ambulance for another fun trip to the ER.

My usual hospital had reported that they were not taking any ambulance patients, but I insisted that it was where I needed to go, so they arranged for me to wait with the walk-ins in my wheelchair. Turns out I looked pretty bad, and got moved right to the front of the line for a bed.

The first doctor to look at me pronounced I was dehydrated, and that they would prime me with fluids. Soon after that they arranged for a room on the oncology floor.

The next morning I learned that my bilirubin counts were up, indicating a liver problem. First it was an ultrasound, then a CT, then an MRI (I forgot how small that tunnel is!) and then a diagnoses of my damn lymph nodes blocking my bile ducts. I was immediately scheduled to have a stent installed the next day.

Unless that is, my bilirubin counts came down, which is exactly what they did. So, by Friday they decided I was well enough to go home.

There is good/bad news to go along with all this; my CT scans showed that my tumor activity was frozen. Not shrunk, but not growing. This probably means that I have about a month before the cancer figures out how to beat the folfox.

From there? I am too weak to qualify for a clinical trial, and there are no more drugs, so...

Lesson for the day: if your urine turns dark, and your stool turns white, don't wait for your eyes to turn yellow! Get thee to a hospital!

Love you all,

Blake

Lovekitties's picture
Lovekitties
Posts: 3302
Joined: Jan 2010

So sorry to hear that you had to visit the hospital again, but glad to hear you were well enough to get sprung.

Yes, definately look for a new nurse...that one doesn't seem to be practicing good patient care.

Glad to hear your eye sight remains good...just don't let the wife see you oggling the lady fire fighter...lol.

Hope that if your current chemo stops working that your doc may consider trying a previously used one...who knows...maybe with the break and other meds...an oldie but goodie might just kick in again.

Take care and give your good wife a big hug.

Marie who loves kitties

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Kathy pointed her out to me, so she was oggling before I was! This woman was truly stunning, in an Angelina Jolie kind of way.

I am already on a previously used one, the only one that we did not run out till it stopped working. This is truly the last hurrah in my case.

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

I hadn't seen you around too often and just thought maybe you were taking a break. This was definitely not a good break. Yeah, maybe it's time for Julie to move on.

Just hoping that the Folfox is still working. Can't remember the different chemos that have been given to you, but I know JBG is on Irinotecan & 5FU and she'll have a scan in a couple of weeks to see how it is working. Is that one a possibility for you?

Please continue to get better and stay away from that "home away from home".

Luv,

Wolfen

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I swear this cancer ride we are all on is so bizarre. It seems like we get over one thing then boom something new jumps up and challanges us. Glad you are back home. Praying everything calms down. Jeff

LAF53's picture
LAF53
Posts: 61
Joined: Sep 2011

I'm beginning to realize this cancer crap is one thing after another. Glad you got thru your latest and are home again. Take care.
Lydia

buckeye2
Posts: 428
Joined: Jul 2011

You have a truly amazing attitude. You still have a sense of humor even with all the crap you are dealing with. You just got to get better. Lisa

Jaylo969
Posts: 827
Joined: Jan 2010

Good morning Blake! I am so sorry you are having such difficulty but your humor is quite impressive :-) I got a good laugh at your lesson for the day.

Seriously though, your 'nurse' sounds like she has some issues herself...like acute brainfog. Can you ditch her without severe repercussions? It could be awkward I know, but she needs to get herself in gear.

Take care, keep us updated if you can, and above all keep that wonderful humor.

-Pat

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Blake

I woke and caught your post first - looks like the firefightin' honey was the highlight of the evening...

I'm glad you are back home and hope you can stay there. I know you've got a real good handle on a great many things and your humor despite what you are telling us is pure Blake.

But, it hurts to hear of the latest news with treatment possibilities. You've been through a tremendous ordeal these past few months and somehow I know that "orneriness" of yours will pick up and take over as the new treatment of choice.

Blake, I hope things will get better for you. I'll check back in on this post when I can.

-Craig

lauragb
Posts: 370
Joined: Aug 2011

Blake,
Well when I saw the subject line I expected you had been enduring more crapola. And here I had you in my stable file. But you are so resilient to already be out. It amazes me. Some of us just don't have that uncanny ablility to rebound like you do and with humor.

Hang in there. Remember you're you, uniquely strong.

Love and light your way.
Laura

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Blake, I hope by the time you read this that Julie has been replaced, and your mind is holding a spark of hope for things to turn around.
You add so much to this Board: intelligence, wit, empathy, sensibleness--the list goes on.
You just have to get better~

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and so sorry you have to go through all of this terrible crap. It's just unbelievable, and profoundly unfair, how much suffering cancer can inflict upon us. But I have to admit I smiled when you commented on the lady firefighter...if you can appreciate a hot babe in the midst of what you were going through, there's still hope! Hugs, Ann

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Holy Cow!! I am glad that 911 was called and that you got some help. I hope you are feelign better!!

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

As an RN myself, I am shocked that someone would leave you after calling 911. I think I'm more shocked that neither you or Kathy knew she left. Please report Julie to her superiors and find a new nurse.

However, I am glad that you're doing better and out of the hospital. Clay colored poop and tea colored urine is never good.

Hugs and love,

Holly

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi Blake, I'm so sorry to hear that you've been having such a hard time lately. I just wanted you to know that I'm thinking of you and hoping for the best.

Take care, Cynthia

(Oh, and you should really report that nurse! What a horrible "caregiver".)

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Oh, Blake. I'm so sorry you had such a rough time! I'm praying for you, dear.

*hugs*
Gail

janderson1964
Posts: 2215
Joined: Oct 2011

I am glad to hear that you are home and that the scan showed things are stable. Keep fighting. You are an inspiration to me.

Jeff

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