Friday, July 11, 2014

Not a lot has happened since my last post. I had chemo this week which was a major fiasco. You would think that after 4+ years this would be somewhat routine. Due to still being on the drug trial I had to have an ECHO (heart) which was scheduled for 1:00 PM Wednesday (before chemo). I arrived at 12:45 PM only to be told that the ECHO was actually scheduled for 3:30 PM. I showed the girl the email I received from the nurse who set it up only to be told the test wasn’t even set up until that morning. REALLY??? I inquired when they closed and was told 4:30 PM and I knew there was no way with chemo at 2:30 PM I would be on time for a 3:30 PM appointment. So I canceled and went up to check in for my doc appointment at 2:00 PM. The trial chemo I am on is made in the hospitals R & D Pharmacy which is off-site so I learned the first I do is to go to the chemo area to be weighed and they could order the drug which was done at 1:15 PM. I went back to the waiting room for my doc appointment. About an hour later the nurse who set up the ECHO walked by and I alerted her to the fact that I didn’t have the ECHO because it would conflict with chemo and by the way the appointment was 3:30 PM, not 1:00 PM as she emailed me. The first words out of her mouth were “so you don’t want the ECHO”? No, I want the ECHO but there was no way I was going to be able to be there at 3:30 PM since chemo is always running late. So she told me to go to chemo and she would have the doc come see me over there. I sat for almost 1.75 hours before I was called (it was now 3:45 PM) only to be told that the chemo wasn’t ordered. OK – I weighed in at 1:15 PM and they only now found out it wasn’t ordered????? I tried to explain to the chemo nurse (male) that it was unacceptable since I did everything I should have done to get it ordered so it would be ready for my appointment. That’s when I was told that the reason it wasn’t ordered is because I gained 10 lbs since the last treatment and any change of 10% the order had to be resigned by the doctor. Anyone who knows me knows I keep records of everything regarding my health. I pulled out my phone and went to notes and read off my weight for the last 3 visits (9 weeks) which shows I actually gained 8 lbs. The nurse started rattling off how chemo dosage is calculated from your weight and proceeds to start showing me how it is calculated. I tried several time to explain to him that I know how it is calculated and know the equation. My concern was that I DID NOT GAIN 10 LBS IN 3 WEEKS!!!! Of course he was intent on showing me how smart he was by calculating the dosage that he either didn’t hear what I was saying or didn’t care. I finally told him I was very close to calling someone (and that someone would be the President of the hospital which I’ve done before on an unrelated issue with ER) and he laughs. Lesson 1 – don’t piss me off. I saw my docs nurse and asked him to go get her. I explained what was going on and the next thing I know my doctor is walking over to see me. Bottom line some one is either entering the data incorrectly in the computer or their scales are way off from each other. I personally know that I could be weighed on three different scales on the same day and have three different weights. So because of the SNAFU I was at the hospital from 12:45 PM and didn’t leave until 6:00 PM. The frustrating part of this whole debacle is that 10% is 14 lbs and if I really did gain 10 lbs. it shouldn’t have been an issue. For those who regularly read my blog might remember I had the same issue a couple months when they “thought” I lost 15 lbs in 3 weeks. World Class Hospital……hhmmmm

After that it should have been free sailing…..WRONG. If you remember from my last posting and them find suspicious areas in both the MRI and CT scans they agreed to re-do the test in 6 weeks. So as we are walking out I look at the After Treatment Summary and see that my CT Scan was schedule for September instead of the end of July. AARRR, here we go again – I need to get involved to get things rectified. Sounds simple but you just can’t call and get the appointment changes. It needs to go through the doc to the nurse to the scheduler to the department. It now has been 2 days and I still not have an answer. Want to bet that when they finally get around to making changed that July 29 will be booked for the morning appointments??? The Brain MRI was scheduled for 6 weeks BUT at 1:00 PM when I specifically requested a morning appointment 3 weeks ago so I could go to work afterward. They just cannot get it through their brain that I work full time and do not like taking off a whole day of work for a 1 hour test. Maybe I should just go on disability and then have the luxury of going for whenever they schedule me.

I know I keep harping on how you cannot depend on the doctors, nurses and staff to be in control of your treatments, etc. But if you’ve learned anything from the postings I’ve made is you have to be part of the team, know what is going on and keep records. Don’t depend on them to always know your case.

OK – I feel better venting and hope you learned to stand up for yourselves.

Puttin’ on my big kick butt boots.

Keep on Dancin’