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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!

The Next Step July 12, 2014

Posted by Judy in Musings.
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Our local babywearing group just received a donation of an Onya NexStep baby carrier!

(This has nothing to do with my post, other than the fact that the name of the carrier and the title of my post are the same! :D)

Now that chemo is over, I get to move on to the next step. I’ve had several people ask if the end of chemo meant that I was in remission. I’m not actually sure when I would be officially considered to be in remission, but I do know that time is not now. The end of chemo just means that I’ve finished the second step in a four step treatment plan. Now, I get to move on to radiation.

I met with the radiation oncologist on Wednesday to discuss the specifics of the treatment. But before I did that, I had another heart echocardiogram done on Monday. If you’ll recall, I had one done before starting chemo, and they found that my ejection fraction (how hard my heart sqeezes the blood out) of my left ventricle was borderline low at 45%. This caused the medical oncologist to change the chemo drugs to something less toxic. Fast forward to Monday, and I have the test redone. The nurse called me on Tuesday afternoon to tell me that the results were normal.

Me: Really? Totally normal?

Nurse: Yep.

Me: Wait. Previously, my ejection fraction had been lowish. Is that now not the case?

Nurse: Hmmmm . . .let me look. Well, it looks like the ejection fraction is 65%

Me: Whoa!

I wonder if the first technician made a mistake and my heart really was fine. I have a hard time believing that my heart is better AFTER chemo. No, wait, actually, with all of the people who have been faithfully praying for me, this should come as no surprise. Hallelujah for answered prayers!

So the radiation oncologist said he wants to do 33 treatments. That translates into 6 1/2 weeks of daily radiation. I’ll have to go in at the same time every day, Monday through Friday, for 6 1/2 weeks, starting sometime after I get back from my little vacay. Each treatment will take about 30-45 minutes, since I’ll be getting radiation to my chest wall as well as the axillary area (since I opted to not have all of my lymph nodes removed). We talked about the side effects, which are minimal, with the biggest one being tiredness. He did say that I would need to use a special lotion on the radiated area to help with skin irritaion. In addition, I won’t be able to take hot showers as that will irritate the skin, I’ll have to use dye and perfume free soap and I won’t be able to use deodorant. (I apologize in advance for any stinkage that may emanate from me for the next two months!)

The biggest surprise was that I will have to use shirts with SPF protection of at least 30. As I understand it, the sun’s rays, in conjunction with the radiation will be too much for my already compromised skin, putting me at risk for burns. Unfortunately, much of the clothing that has sun protection built in isn’t particularly attractive and the attractive stuff isn’t cheap! ($50-80 per shirt) I think I might try out this stuff you can use in the wash to add protection to your clothing.

Speaking of compromised skin. . . . .the doctor asked if I was planning on doing reconstruction (radiated skin is much harder to operate on, thusly, reconstruction would be tricky). When I told him no, he said that was a very wise decision, saying that reconstruction is fraught with all sorts of problems and complications. Then he said, “You are more than your breasts.” And I thought, isn’t that the truth! He then told me about another patient who was struggling with this issue, worried what her husband would think of her. So the doctor says, “Well, he didn’t marry you for your breasts.” At which point the husband says, “Actually, I did.” Seriously? What a chump!! Since my surgery, I have a greater appreciation for the fact that guys seem to be always checking out “the girls”. It must be something about not having breasts that just draws you to looking at them. I find myself paying wayyy more attention to boobs than I even thought possible given my total lack of interest in them! Even so, I maintain that the guy was a chump for having said what he did! SMH! But I digress.

Today I was supposed to meet with the nurse to have a teaching session where she would share more specifics about the exact lotion I need to use, where to buy SPF clothing, etc. For some reason, that didn’t happen before I had to go in and have my radiation setup appointment. This is where I got to find the most comfortable way to lay in a very uncomfortable position. (Flat on my back with my arms over my head in a FREEZING room!) Basically, if anything was uncomfortable, this was the time to speak up. Once everything was set, that’s the way I’d have to lay for the 33 treatments. We did all sorts of fiddling: pillows under my legs, moving the arm holders around, changing the neck foam, and on and on. We (the technician and myself) finally came up with a setup that was livable. By the end of the hour, though, the bump on the back of my head was killing me! I’m hoping it’ll be better during radiation.

During this setup time, the tech also did several CT scans to help the doctor plan how he would do the radiation. It was very important that I not move during the scans to give the doctor the most accurate picture. When I say no moving, I mean NO movement. The tech had drawn on me in several place with a pen to have landmarks. He had to redo one of the scans because I had moved a few millimeters. Millimeters! Frankly, I’m sort of freaking out about having to lay still for so long. Remember me? I’m the one who got yelled at in the MRI machine for moving. Staying still is just not in my bones, especially when it’s an uncomfortable position. I did figure out that I can wiggle my fingers and hand without any problems, I just can’t move anything else.

Because I’m getting radiation on my left side, they have to be especially mindful of my heart and lungs. The two methods of delivering radiation are through a gating method, which times the radiation pulse to arrive when the heart is out of the way, and a breath-hold method, in which the patient holds their breath to move the heart and lungs out of the way during the radiation pulse. I didn’t have to do anything for the gating method scans. For the breath hold method scans, I had to do jumping jacks. No, just kidding. I had to hold my breath :D. As far as I can tell, the breath holding needs to be consistent, so I decided to sing a song in my head so that each time, I’d hold it for the same amount of time and my brain would be thinking the same thing, which would hopefully cut down on movement. I think it worked, as the tech said I held my breath for roughly the same amount of time during the 5 practice breath holds. On the sixth time, I took a breath, he quickly checked two of the landmarks then ran out of the room to start the scan. (I was still holding my breath during this.) By the time the scan was done, I had been holding my breath for about 40-45 seconds. It made me wonder what they do for people who can’t hold their breath for that long.

Anyway, so once that was finished, it was time to make sure the landmark markings didn’t disappear. Sometimes they use tape, but that can shift or fall off, so we opted for a permanent option: tattoos. I now have five tattoos on my chest, but I bet you wouldn’t even know they were there, even if I told you. They are quite small, like the size of this period “.” One interesting thing to note. One of the tattoos was right next to a freckle that was pretty much the same size and color as the tattoo. The tech made a note of this for the future. But, I’m still planning on mentioning this at my first few treatments just to make sure they don’t get confused!

So now I’m just waiting to hear back from the clinic to schedule my treatments, and I should be done with part three of the greater treatment plan around the beginning of September.

Next step, here I come!

The Gamma glow January 4, 2014

Posted by Judy in Musings.
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Having a potentially life-threatening disease means that you get to undergo lots and lots of very expensive tests. Tests that put you in weird positions, make you feel strange, and force you to lie still for inordinate amounts of time. So far, I’ve had:

ultrasound – $460
diagnostic mammogram – $630
ultrasound guided core needle biopsy – $14,750
regular mammogram (I’m guessing this was included in the price of the biopsy . . .what a bargain!)
chest x-ray $1100
MRI – (no info on cost, yet)
genetic testing – $500

Today, I added two more to the ever-growing list: CT scan and bone scan. And yes, they both were weird in their own way.

A CT scanner looks like a giant donut. The patient lays on a table that is then moved through the donut hole and pictures are taken as the patient goes through. This allows the radiologist to look at slices, or cross-sections of your body, allowing visualization of bones, organs and soft tissues. I had a CT scan of my chest and of my abdomen/pelvic region. For the latter, they gave me a drink called Barium . It wasn’t terrible, but it wasn’t the tastiest thing I’ve tried. Barium acts as a contrast, making it easier to see what is going on in the abdominal/pelvic region and can help highlight any tumors. For my chest region, they injected iodine as the contrast. Hands down, this was the weirdest experience. The tech told me, “This is going to feel quite warm, you might taste it in your mouth, and you might feel like you are peeing your pants . . . but don’t worry, you won’t be.” Uh, okay. Two seconds later, BAM! Extreme warmth in my arm, warmth at the back of my throat, and a feeling like I’d had a major peeing accident. So, so weird! Thankfully, that only lasted about 10 seconds, and then it went away.

As they were moving the table through the donut hole, I was told to hold my breath. This happened 4 or 5 times. On the 3rd time, I took a medium-sized breath, only to find myself running out of air long before I was all the way through the hole. I was in a quandry: do I breathe and mess up the pictures, or not breathe and just die? Okay, maybe that was a wee bit dramatic of me. But are you really surprised? I AM a soprano, after all! 😉 Anyway, the next time I was instructed to take a breath, I took in much more air and made it to the end, but barely. This got me to thinking: 1) I’d be a terrible skin diver! 2) How in the world do I manage to sing such long phrases if I can’t hold my breath for very long at all? Hmmmmm . . . . ..

Once the test was over, the tech decided that I should hang out with the nurses for awhile since I was coughing (according to me this was due to my cold) and rubbing my eyes. She was worried I might be having a reaction to the iodine. So, they gave me juice and crackers and I sat in a big, comfy, overstuffed chair and read my book for about half an hour before they sent me on home.

The bone scan is done by injecting the patient with a radioactive isotope. I have a very limited understanding of how this works, so I’m sure I’m going to get this all wrong. But, the isotope then moves throughout the body and is attracted to cells that are doing alot of repair work. When they scan the bones, if they see an area that is all lit up, they know that lots of cell repair is going on there, which signals a problem.

Technesium 99m is the name of the isotope used. They injected it into my veins this morning and then I had the scan done several hours later, after the isotope had had time to move throughout my body. My arm got this weird tingly feeling as it went in, then it was fine. The bone scan was somewhat similar to an MRI in that I was in a somewhat enclosed space. I was laying on my back on a table and there was a camera thing right above me and below me. The camera started at my feet and then the table slowly moved until the camera was up at my head. This took about 20 minutes, and I’m pretty sure I took a little snooze =) I must’ve been pretty tired to have fallen asleep since I wasn’t particularly comfortable. They gave me a wedge to put under my knees for comfort, but then they held my feet together with a bungee. It was a really awkward position to be in!

Since they injected me with radioactive material, I’ve sequestered myself away from the family for the rest of the day to reduce their exposure to my gamma glow =) I will say, it’s kinda nice to have an entire afternoon with no interruptions! I’m already thinking about all of the things I’m going to get done =)