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The telephone game April 27, 2015

Posted by Judy in Musings.
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Remember that childhood game, telephone?  You know, the one where you whisper something in someone’s ear and the message has totally morphed by the time it gets to the person at the end of the line?  Sometimes, it seems to me that health care providers like to play that game.  It certainly seemed that way at my CT scan on Thursday.  After returning to the lobby, I said to my friend who had accompanied me, “Well THAT’S going to make a good blog post!”

I arrived at the Heart and Vascular Institute at 9am, got checked in (by a former student, no less) and then got called back for the test.  My friend and I stood up to go, but they asked her to stay in the lobby since the other waiting room was getting full.  “It should only be about 5 minutes, anyway.”  That should have been my first clue that something was up.  I figured they were planning on getting me ready, then I’d go back to the lobby, then get called to the back again.  I knew it couldn’t be a 5 minute test since the scheduler had said it would take about 25 minutes.  We enter the room, she gets me situated on the platform and says, “This won’t take long at all.”  I thought about just letting that comment slide, but knew that didn’t seem right.  For starters, no-one had started an IV for the contrast, and while medical advances have been vast in the past few decades, I’m pretty sure they haven’t figured out a way to get contrast into your body through osmosis.  So I piped up, “Aren’t you going to use contrast?”  “No, we don’t use contrast for this test.”  Crickets.

“Um, I’m pretty sure the doctor ordered a test with contrast.”  “Really?  Because scanning this part of the body doesn’t generally require contrast.”  I tried to remain calm, even though my blood pressure was already on it’s way up.  I explained the whole situation, including the confusion of the tech, the conversation between the radiologist and the radiation oncologist and the fact that the scheduler, a lovely man named Kelly, had made a point of putting a note in my chart stating that the test had already been verified with the doctor and it was to be the CT scan with and without contrast.  This was all very awkward for me because I was laying on this platform with my head in a supremely uncomfortable head holder thing such that I couldn’t really move my head much to look at the tech.  She thanked me saying, “That was really informative.  I’ll be back.” and suggested that I sit up while I waited.

A few minutes passed, my mind racing the enter time.  She came back in saying that there are protocols for the tests, and using contrast would fall outside of the protocol, so another person would be looking into it with the radiologist and getting back to me.  Again, I was left alone with my racing thoughts.  Just as I had gotten up to send my waiting friend a text message, a lady walked into the room, apologized for the confusion and said they were ready to get started.  Again, I thought about letting the apology go without comment, but then decided that enough was enough.  After asking me a set of standard question (Do you have diabetes?  Are you allergic to Iodine?  etc.), I said I had a question for her.  “I’m just wondering how this whole mix-up even happened.  It was clearly stated in my chart that this was the test the doctor wanted.  Did people not see that message?”  “Well, when we look things over the night before . . . . . . .”  The rest of her words turned into the something very akin to what the adults would say on that kid’s show, whose name I can’t recall.  The Muppet Show, maybe?  . . . . .Wahw wahw wahw wahw wahw .  .. .  I looked away, shrugged my shoulders and said, “Whatever.  I’m still not happy about it.”

I don’t tend to think very quickly on my feet.  I’m forever wishing I would have said this, that or the next thing, making myself out to be much better at arguing with people than I really am.  Fortunately, quick thinking was with me that morning.  I continued, “If I wouldn’t have said anything, you guys would have done the wrong procedure!  I shouldn’t have to check up on everyone to make sure they aren’t screwing up!  I shouldn’t have to advocate for myself, yet here I am and I’m frustrated!  I’m sorry you’re getting the blunt end of my frustration, but this sort of thing has been happening throughout my entire illness and I’m just tired of it!”  She again apologized, stating that she felt especially terrible that she was involved in the mistake.  (She had been the person to review the cases the night before in preparation for the day’s procedures.)  “I’m actually on a committee created to keep this sort of thing from happening and to improve the patient’s experience.  I’ll definitely be taking this situation back to them for review.  My name is Haley, if you ever have any other dealings with this department, please ask for me.  I want to be sure that you have a problem-free experience from here on out.”  Maybe she was just paying me lip service, but I was satisfied with her response.

She went on to try and explain why things had transpired the way they had from her perspective.  I’ll be honest, I wasn’t really listening, because by that point, I didn’t care.  I’d said my piece and was ready to get this stupid test over with.  I do recall her saying something about wanting to be thorough and make sure the radiologist had the correct test to read and to make sure there weren’t any mistakes.  Now that I’m a few days out and have had time to think about it, that last statement is totally ludicrous.  Clearly, their efforts for accuracy caused them to be inaccurate.  I’m still wondering how they a) missed the order which I thought clearly stated “CT scan with and without contrast” and b) how they missed Kelly’s note stating that the test had already been verified as being the correct test.  Was anyone ACTUALLY reading my chart?  According to Haley, my case was outside of the norm and didn’t fit into the protocols, which is why some of the mistakes happened.  Uh, sorry, that doesn’t give you a free pass to go on ahead and screw up.  If you are married to having protocols, you should have one in place to deal with those cases that fall outside of the norm.

Anyway, so the air was cleared and we moved on with the test.  During my entire diatribe, there was this other guy floating about the room busying himself doing who knows what.  At this point, he was introduced to me as someone who was training.  I smirked and said hello.  Maybe, just maybe, he learned a lesson that will improve the care he provides to patients.  Maybe.

The actual procedure was fairly unremarkable.  Haley did an amazing job at inserting the IV.  Seriously, zero pain, which was a first!  The iodine injection was creepily weird.  At first I felt a cool sensation in my veins, and then it was very warm, very quickly rushing through my arm and throughout my entire torso, making me feel like I’d peed my pants.  They did the scan, took out the needle and I was on my way, but not before Haley said two more times that she wanted to be the one handling my care in her department from here on out.

All in all, I guess it turned out fine, thanks to me!  I’ll find out the results of the scan tomorrow.  I have no gut feelings on which way it’s going to go.  I hope that it’s nothing, but am prepared for it to be something.

Pain April 21, 2015

Posted by Judy in Musings.
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Pain is both a good thing and a bad thing.  Pain is good, because it alerts you to the fact that something is amiss.  Imagine if you didn’t feel pain when you touched something hot, you’d end up with all kinds of burns.  Pain is one of the ways that your body tries to preserve itself.  When you feel pain, you should at the very least note it and not ignore it.  Pain is also bad, because it tells you that something is amiss, and I think we’d all prefer to not have things be amiss.

Pain is interesting beause while most of the time it can be said that the intensity of the pain is directly proportional to the amount of damage happening to your body, this is not always the case.  I think it’s pretty clear that you’d be in incredible pain and in bad shape if you’d suffered 3rd degree burns, or had a giant cut on your body.  I think you’ll also agree that a scraped knee or a small bruise are neither excruciating or life-threatening.  But what about that persistent headache, or the ache in your side or in your breast, or the bone pain that turn out to be something quite terrible?  That’s the kind of pain that is evil and tricky and confusing.  Once you’ve been attacked by THAT kind of pain, then every pain is cause for alarm.  Some might be tempted to call you a hypochondriac.  As I told my doctor:  The last time I had a little pain, it tried to kill me, so I think I’ve earned the right to be paranoid and alarmed!”

Today, I’m paranoid and alarmed, and have been for a little over a week.  A week ago Saturday, I started feeling a pain at the base of my neck, a pain that seemed muscular in nature, so I figured I’d slept wrong.  DH massaged it a few times and I put some topical medicine on it in an effort to make the pain go away.  That evening, I moved my neck and the pain radiated down to the front of my throat.  “Hmmmm . . . that’s weird”, I thought.  A little while later, I swallowed, and the pain shot back to the base of my neck.  Double weird!  The next day, the pain continued, I noticed that my voice wasn’t working quite right, and I felt swelling on one side of my trachea, the same side that got grazed with radiation.  I decided that this wasn’t a pain that should be ignored and I planned to call the med onc’s office first thing on Monday.

I really like my med oncologist, but it’s nigh unto impossible to get a hold of people in his office.  It’s deplorable!  I called and left a very brief and non-detailed message for the nurse shortly after 8am.  When I hadn’t heard back by 3pm, I called again.  The receptionist confirmed that the nurse had received the message and was going to talk to the doctor.  Uh, wait a sec . . . .shouldn’t she talk to me FIRST to get more details BEFORE talking to the doc?  Needless to say, I didn’t get a call back.  So that evening, I sent a detailed message to the nurse via the online messaging system.  That must’ve been enough to nudge them into action, as I got a call on Tuesday.  Of course, the doctor wasn’t in that day, but the radiation oncologist was in.  He was consulted and thought the pain shoudl be investigated.  I felt good that he didn’t blow me off as being overly paranoid! The following day, Wednesday, saw me heading to the Cancer Center to see what was up.  By this point, the pain was a little less painful than it had been on Saturday, and the swelling on my trachea had practically gone away, but it was still radiating back and forth between my throat and neck.  The doctor didn’t feel anything, but thought it wise to have a CT scan of my cervical spine.  Happily, the insurance company approved the scan and I got a call on Friday afternoon from the scheduler.

I’ve decided that nothing with healthcare can be simple.  This was no exception.  The radiology tech felt that the diagnosis code didn’t match the requested test.  Further inquiry found that the code was breast cancer (duh) and the test a cervical spine scan (also, duh, since the pain is in my neck), and they really were both correct.  This still wasn’t good enough for the tech, so s/he decided to consult with the radiologist on duty.  THAT doctor also questioned the test, so he decided to call the rad onc to see if he was sure about that test, suggesting that an MRI might be a better choice.  My cynical inner monologue went something like this, “Well of COURSE an MRI would be better, it’s leagues more expensive and pads your pocket better!  And yes, it’s clear that you know MORE than the acutal oncologist!  Riiiiight!”  I’m sure it comes as no surprise that the oncologist said, “I ordered a CT scan, that’s the test that I want.”  Hahahaha, oh to have been a fly on the wall during that conversation =) Anyway, so I’m having a scan done Thursday morning, and I follow-up with the rad oncologist the following Monday.  I’d be lying if didn’t say that I was a little more than stressed out about this whole thing.  Someone asked me if I’d considered the possibilities.  Yes, the “Shoot, the cancer’s gone to my bones or brain” thought already muscled it’s way into my brain and has taken up residence there.  A small part of me thinks it’s just a confluence of factors (kink in my neck, possible cold, sheer exhaustion) causing the pain.  But the fact that pretty much nothing has changed in the past week – except that today I seem to have developed a cold – makes me feel like the confluence of factors has nothing to do with it.  *sigh*

If this was my only health stressor, that would be stressful enough.  Facing a potential hysterectomy and a potentially failed scar revision (blog posts coming with deets, probably more than you want to know!) make the stress exponentially greater!  I try not to think about it and pretend all is well.

Waiting is always the worst.

Monday will hopefully bring answers, but that seems so very far away!

Later, port! November 19, 2014

Posted by Judy in Musings.
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I should have written this post a month ago six weeks ago. But I’ve been stuck just standing here, so I couldn’t. I didn’t want to. At this point, it’s such old news, I debated whether or not I should even bother writing the post. Given that ALL of my other surgical experiences were marred by deplorable nursing care, I wanted to share this one as an example of a good surgical experience, just to prove that they do exist!

My last radiation treatment was on the 16th of September. (Major happy dance. Have I mentioned that radiation sucked?) On the 19th I saw the head of my oncology team, who said that I didn’t need my port any longer. (Another happy dance.) As much as I thought the port was amazing, it’s usefulness had long since ended, and it was now an annoyance.
• It was something that the toddler liked to play with and twiddle.
• It got in the way of using every single baby carrier I own (which is a lot!).
• It itched like crazy!
So, it should come as no surprise that I wanted that thing out post haste. I managed to snag an appointment with the surgeon a few days later, on the 24th, and his awesome scheduler got me scheduled for the port removal just a few days later on the 29th.

Normally, the port would be inserted and removed as an outpatient procedure, and it’s something that radiologists could do. Mine was inserted during the mastectomy surgery. The surgeon could have removed it outpatient, but he preferred to do it in the operating room just in case anything went bonkers and it would allow him to be more thorough. I’ve always appreciated his thoroughness, so I had no problems with going back to the OR.

Monday morning saw my friend and I heading to the hospital at 7am. This was a new experience for her, but old hat for me. I got checked in and was then whisked back to be prepared for surgery. They always ask you to leave a urine sample, but most of the techs don’t bother to tell you why. The tech I had that morning told me that she had to do a pregnancy test, which she proceeded to do right there in the room and she told me the results. (Win #1 for the hospital. I’m always a fan of patients being completely informed!) After that came the long list of questions, and then they had to start the IV. This turned out to be the only hiccup in the whole morning. The nurse found a nice vein on the top of my hand that was standing up and shouting, “Pick me! Pick me!” As it turned out, that vein was just evil and wanted to play a cruel joke on us all. Every time she got close to the vein, it would roll or scoot out of the way. She poked around for a good 2-3 minutes. When I say “poked around”, I don’t mean that she was taking the needle out and reinserting it. The needle was in, but she wiggled it around trying to get it into the vein. If you think that sounds really unpleasant, you are correct. To make it worse, I didn’t have any anesthetic on my hand since I’m allergic to Lidocaine. Ah, what fun! She eventually went to get another nurse, leaving the needle in my hand while she went. Part of me thinks that was unwise/unsafe. The other part thinks she did it to avoid another needlestick. Anyway, the second nurse gave it one go and said, “Nope, this one isn’t going to work.” They, of course, had to use a new needle for the next attempt. And naturally, they only had the big needles left. But really, after all of the poking around, getting stuck with a giant needle was no big deal.

My friend and I visited for a little while before the anesthesiologist came in. I gave her my usual, no Versed, no morphine, no lidocaine spiel, and she told me I wouldn’t be totally knocked out, just in what they called a twilight sleep. This meant no tubes or anything else in my mouth. I was given two meds for nausea since the twilight sleep drugs can make you feel pukey. One was given by mouth, and the other was a patch that they placed right behind my ear.

Just a few minutes later, the nurse came to take me to the operating room. This being my fourth trip to said room, I was totally relaxed and was able to take in all of the sights, sounds and smells. I made it a point to look around and actually notice all of the different equipment and such in the room. I scooted over to the ridiculously narrow operating table and they got me all hooked up and ready. The anesthetist came over and introduced herself, and then said, “You look familiar. I think I was with you during another surgery.” She seemed familiar to me too. Not just the way she sounded, but also her way of being and her diction. I said, “Yes, I think you did. I requested the use of the LMA?” At this, recognition came into her eyes and she said, “Yes! You are a singer and didn’t want any tubes near your cords!” I guess I must be one of the very few people who have used an LMA. Either that, or I caused enough of a stink that my image was etched into their memories!

Anyway, we chit-chatted while she got me ready and she complimented me on my short haircut, saying that a pixie-cut was really great on me. This struck me as sort of funny, given the fact that she’d only ever seen me with a surgical cap (think shower cap) on. I’m not really sure how she could tell what my hair was like or how she even got the full effect, given the cap. But hey, it was a compliment . . . I’ll take it.

The twilight sleep inducing meds were delivered through the IV. I have to say, this was the absolute worst part of the entire morning. Holy cow! I’m not even sure that the word painful is adequate to describe the sensation! Hands down, WAAAYY worse than childbirth! Sometimes meds hurt because the amount being pushed through the vein is almost more than the vein can handle, other times it’s something in the drug that causes the pain and other times the medication is thick and has to bully it’s way in. I’m not sure which one it was in this case, but it. was. awful! It started out cold. Then it felt like my vein was going to explode. When my entire hand became engulfed with this insane pain, I had to grit my teeth, wiggle and squeeze my toes, take deep breaths and pray that the sedative would take effect very, VERY soon.

I woke up as they were wheeling me back to my room. Fortunately, I didn’t wake up thinking about the excruciating pain my hand enduring at the administration of the twilight sleep-inducing meds! Given that I was in twilight sleep mode, they skipped the recovery room. It’s been a few weeks now, so I don’t exactly remember the chain of events. That, and I’m mixing up surgeries in my mind. I do know that I was allowed to go home fairly soon after getting back to the room. I felt pretty good, just super tired, which meant that I went straight to my bed upon arriving home and slept for several hours.

All in all, this was a vastly superior surgical experience. I don’t know if I had a better set of people, or if the fact that I had my notebook out to take notes of names and meds and everything spurred people to do better. Regardless, I have no real complaints this time. That’s kinda huge, right? Seems like I should congratulate the hospital on their good work, as a contrast to the lambasting they received as a result of the suboptimal care during previous procedures. But let’s be honest: it’s taken me 6 weeks to get this post written and posted. Somehow, I don’t think that congratulating the hospital is very high on the totem pole! 😉