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I just want something to go "normal" just once

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I am tired of being the oddball. Once again, not a "normal" day in the life of chemo for me.

I thought I'd been doing better this time than first round, and I swear I've been eating more and drinking more, and should be fine. But that isn't the case. I'd lost 8 pounds this morning since infusion day - again. I've been incredibly weak and worn out. More than ever in my life before.

I had to scale back plans this morning to a very quick rinsing shower without shaving or washing my hair. I couldn't stand long enough to accomplish more. This really bothers me because I really need to wash my hair. (And of all weird things, much of the top of my head feels sunburned - I don't know if it is going to help or hurt to shampoo it.)

When I got to the oncologist's office I almost passed out. I got really carsick on the way, and then the walk to the office did me in.

When they called me back for my Neupogen shot I wasn't doing so well. Standing and walking to them I got very dizzy and was ready to go down. I told the nurse I thought I needed fluids again, and that I wasn't well at all. She was perturbed. My chart was at Edina, not Burnsville, so the only thing she was "authorized" to do is give me the Neupogena shot. I told her I didn't care - do whatever she had to, but I HAD TO SIT DOWN. I was ready to pass out.

After sitting I didn't get better - I got worse. She did come with my shot and asked where I wanted it - back of arm or tummy. I don't care - left arm or tummy - wherever you think is best, but not my right arm. Tummy it is. I got the shot. It stings a little, but no big deal. But then I started burning up. I swear I felt my temp was 110. And I got all fuzzy, and thought I would throw up and pass out at the same time.

Another nurse helped me get laid back out in a recliner. She got the blood pressure cuff - my pressure had dropped really low. And so did my temp. Really weird. I'm feeling like I'm 110 (I've been running just over 99), but my real temp was only 96 right then. Temp and BP fell. And to top it all off, my fingers, hands and arms started tingling - really tingling. It felt to me like they were shaking uncontrollably, and I couldn't use them at all. But if you looked at me - I was not shaking. Talk about freaky!

I was told this all happened because my BP fell too far. The supervisor hooked up a bag of fluids, even though the first nurse said they couldn't treat me without my chart. This made no sense to me. I was TOLD to go to the Burnsville office Monday, Tuesday and Wednesday for Neupogena shots, and Wednesday for labs. Yes - I can go for shots or labs, but no case work the nurse says. Well, gee, excuse me for making my blood pressure drop when I came in for a shot. I planned that just to make a problem for everyone in the Burnsville office...

They called for a courrier to get my chart and said it would take two hours. I didn't care if they held me hostage for 2 hours till it came. I just felt awful and couldn't move anyway.

I'm not real happy about the whole thing. It was embarassing enough as it was. And then to get chewed out several times between arrival and departure, and told I "need to choose a clinic and stick with it," did NOT make me happy. I was told that the doctors don't necessarily understand how important this is, but the clinic director does. ??? Then talk to the DOCTOR - leave me out of this.

I have an oncologist that is only in Burnsville on Fridays. I get my infusions on Thursdays. I have to see him before I'm allowed to get chemo. So I go to Edina where he is Monday through Thursday. Also, I like that office better.

Today in Burnsville I had to sit in a chair where anyone walking in the front office door, or standing at the front desk could see me hooked up to IV's, and could witness my shot in my tummy. That just doesn't sit right with me. The Edina office is set up better - more private. Plus the chairs fit taller people better, and have heat and massage. Considering my first two rounds have lasted over 6 hours, I have a right to be comfortable and go to Edina if I prefer it. The price is the same. It is the same group, but the two offices are not comparable.

Just because I choose Edina for chemo infusions, that shouldn't mean that if all I need is a quick shot or labs drawn, that I have to drive past the Burnsville office and into the cities. Who is paying the bills? Who is the patient? And excuse me for being an inconvenience to them. It was an inconvenience to me too - and to my daughter who had to drive me. This is no picnic.

Two bags of fluids and I was out of there. Still extremely weak, but at least upright. I hope I get some strength back soon.

Posts: 1956
Joined: Oct 2009

but to go thru the bull**** you just did is utterly astounding!!!Where is the compassion, understanding, consideration of the medical and nonmedical personnel of this place? You deserve to be treated with dignity, respect, compassion, given leeway for what you're going thru in case you get moody(as I do).....If that were me I'd probably have gotten arrested for the scene I would have created (nonviolent of course--too weak anyway).You have enough to be concerned with to have to worry about ***holes like you just encountered....Stay strong...Steve

christinecarl's picture
Posts: 545
Joined: Sep 2009

I do too, I have only ever gone to the Edina/Southdale location, they are very nice there. Who is your Dr? I truly hope things improve for you, maybe you should print off your post and send it to them so they know how you feel. {{hugs}} hang in there I am rooting for you.

tootsie1's picture
Posts: 5056
Joined: Feb 2008

That's awful! First of all, it's terrible that you felt so bad, and secondly, you did NOT deserve the treatment you got. You should complain big time!


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