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The path of least resistance June 12, 2015

Posted by Judy in Sewing projects.
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I’ve always been fascinated with the way water moves.  It just flows and bubbles and gurgles along, generally taking the path of least resistance.  I sort of think of water as being practical, not working too hard to break through dams and blockages.  Instead, it just meanders to another spot where there is less resistance and keeps on flowing.

My healthcare for the past 18 months hasn’t been very practical, taken the path of most resistance.  (Is that even a saying?  Probably not.  I think I just made that up!)  That’s going to change next week, though.  Next week, I’m taking the path of least resistance.  Some of you have asked what I’ve decided to do about the impressively large fibroid that’s taken up residence.

I’m taking the path of least resistance.

While a full blown hysterectomy would take care of the fibroid, it would also wreak all sorts of havoc, upsetting the applecart, forcing me to amend my plans.  And I have plans for this summer.  Plans to paint and build and design and garden and customize our house.  Plans that I’ve been working on for five months.  I’m not willing to give up those plans or put them on hold.  “But wait,” you say, “why can’t you just do the surgery after your plans have come to fruition?”

Because I’m taking the path of least resistance.

Having the big surgery would mean weeks of recovery.  Weeks of being unable to do projects with the babes.  Weeks of being “not quite myself”.  Weeks of not being able to wear the 2.5 year old.  And yes, I still wear my youngest in a baby carrier.  I hear the words, “Mommy, be carrier with you.” every. single. day.  I sort of thought we’d be done with the daily wearing by this point, but the Little Boss doesn’t agree.  He’s always been my super velcro baby supreme, so I shouldn’t be surprised.  He has, however, been extra clingy the past few months and most of the time, I’m the only one that is good enough.  It’s exhausting, but sweet all at once.  It’s pretty clear to me that babywearing is still important for him.  In many ways, I think it’s more important to him than nursing was.  I’m not willing to take that away from him.  While he was a trooper with the speed weaning, I’m not sure he’d fare as well with a sudden moratorium on being worn in a carrier.

Hence, I’m taking the path of least resistance.

Having major surgery would be another big change to add to the big changes resulting from the past 18 months.  The difference here is that this change isn’t strictly necessary.  I’m not going to die if I don’t have a hysterectomy.  Death could have been a very real possibility, however, if I had chosen to not have breast surgery.  Whether or not to have surgery was a decision that had to be made “right now or else”.  The pressure to make the correct decision was huge, yet I only had a short amount of time to contemplate the options.  The pressure to deal with the fibroid was also huge, until I realized that it was self-imposed.  Now that I’ve stepped back, I see that this isn’t a decision that has to be made immediately.  It isn’t a life or death decision . For the first time in over a year, I have full control over the when and how of my heath.  That realization is empowering.

And so, I’m taking the path of least resistance.

Having the fibroid embolized will likely not be a panacea.  I’m okay with that.  My hope is that the embolization will buy me time.  It will be a stop gap measure to get me through this summer.  To get me through to the end of the Little Boss’s babywearing days.  To get me through a year of relatively good health.  (I say a year since I’ll be revisiting the “to operate or not” issue again next summer.)

But for now, I’m taking the path of least resistance.

Next Wednesday is probably going to be awful.  The doctor made it very clear that this will be painful, but only for a day or two.  I can handle that.  I mean, come on, I’ve given birth to four babies, this can’t be worse than that, right?

I’ll just meander on over and take the path of least resistance.

The telephone game April 27, 2015

Posted by Judy in Musings.
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1 comment so far

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.

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 daily grind March 28, 2014

Posted by Judy in Musings.
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It’s been a week since my surgery, I managed to bust out of the hospital on Saturday afternoon, and have been happily at home ever since. Hospitals are terrible places. Really, they are. You go there to get well, but there is nothing about hospitals that makes it easy for a person to convalesce. The interruptions are constant: vitals to be taken, drains to be emptied, urine to be measured, medication to be given, showers to be taken, visits from the doctor . . . it is endless! I’m pretty sure that I didn’t get more than 2-3 hours of sleep at any given time. It is really difficult for your body to do recovery work when you aren’t getting rest. I don’t really have a solution to the “hospitals are a terrible place” conundrum, though.

In any case, I’ve settled into a daily routine, which is quite different from the routine I followed heretofore. I generally wake up feeling totally unrested with an achy back. After a bilateral mastectomy, the only way you can sleep is on an incline or flat on your back. That’s the one way I can’t sleep thanks to my bulging disk. So I spend the whole night waking up and tossing and turning and then I wake up feeling only marginally rested. (Since starting this post, my surgeon has informed me that I can sleep on my sides. Hooray! Maybe I will start getting better sleep!)

Once up, I have to deal with the drains. Drains are a very necessary part of post-surgical recovery, but I’m pretty sure everyone thinks they are a giant nuisance! In order to avoid excess fluid buildup in the surgical cavity, a tube is placed there which then exits the body at the side, secured with a stitch, like this.

drain exit

A bulb is attached at the end of the tube and uses a vacuum seal suction thing to bring the fluid out of the body. The day of surgery, my drain outputs were crazy high, especially on the side with the hematoma. They were emptied every 4 hours, I think, and it was at least 50-60 mL each time. That has now slowed waayyyy down. When I empty the drain in the morning, I get maybe 20 mL per side.

Prior to emptying the drains, I have to strip each drain to ensure that no clots are present in the drain. This is done by firmly pinching the drain at the point where it exits your body. With the other hand, you pinch the drain and run your hand down to the bulb.

No-one told me this would be painful.

Someone should have told me this would be painful.

Each time you do this, you are recreating suction. Since the drains can be felt through my skin, it feels like it suctioning my skin. I was supposed to do this 4-5 times a day. I only do it twice a day because
a) it’s painful
b) the drains are working fine and I can see fluid moving
c) it’s painful
d) the nurse said 4-5 times per day wasn’t necessary.

After the drains are stripped and emptied, then it’s time to get ready to shower. This is a process. Generally, I have a snazzy little apron I wear at nighttime to hold the drain bulbs.

drain apron

I can’t wear that in the shower, so I wear a lanyard, and then attach the drains to the lanyard with safety pins. Then I hop in the shower and sit on my handy bath chair (yep, totally makes me feel elderly!) and then hubs helps me with my shower. (My arm mobility is improving, but I still don’t reach over my head very well and definitely can’t reach my back.) After the shower is over, I have to get a clean towel to pat dry the surgical area and the drain exit point. The drains are then detached from the lanyard and dumped back in the apron, and I carefully step into my super soft post mastectomy camisole, complete with tummy control.

Let’s take a brief detour here to discuss tummy control. I never realized the giantness of my abdominal area until after the surgery. Even the 3 year old noticed. (“Mommy! Your tummy is huge!”) I guess the boobs offset the abdomen! In the absence of said boobs, the abdomen now looks huge. So now, I think about tummy control, and I’m very thankful for post-mastectomy camisoles with tummy control! 😀

Anyway, gauze is then placed around the drain exit point as a cushion. I then retrieve the bulbs from the apron and place them in smaller bags, which I then safety pin to the outside of the cami. Now I’m ready to put the compression device on. In order to keep the fluid levels down, it’s important to apply compression to the area during the waking hours. I’ve been using a belly band left over from pregnancy.

cami drain setup

Phew! Now I’m ready to get dressed. Several friends have been kind enough to loan me a slew of button up shirts to use until my arm mobility is back to normal.

Next up: my blood thinner shot: Lovenox. These are painful shots that go in your stomach twice a day. I tried to give it to myself once . . . .couldn’t do it. Thankfully, my mom has that part under control. The actual poking isn’t too bad, it’s when the medication is being injected that I wanna yell “OUCH!!” Fortunately, I’ll only have to do the shots for a total of seven days.

And now, an hour or more later, I’m ready for my day. I generally feel pretty good first thing in the morning, but my energy tanks mid-morning, at which point I veg on the couch or goof off on FB. We’ve been blessed to have people providing food for us, and they usually deliver something delicious just as my energy is tanking =)

Not much happens during the day since my energy levels are totally mercurial. According to the surgeon, it will take about 4-6 weeks to get back to normal levels! I’m so very glad to have my mom here and to have a hubby whose work has given him lots of time off!

In the evening, I have to again drain and strip the drains, get another Lovenox shot, and take my daily iron pill. I lost a lot of blood during the two surgeries, so the iron pills are an effort to boost my blood levels without having to give me a blood transfusion. Iron pills have the side effect of constipation. Lucky me, right? So right after taking my iron pill, I load up with anti-constipation aids (Miralax, prunes, flax seed, etc.)

The final action of my day is to remove the compression band, re-don the apron and then head to the couch for bed.

I’ve settled into a daily routine, but I’ll admit, it’s a bit of a grind. I guess I shouldn’t complain. By and large, I’m not feeling any pain from the surgery, so that is good. But I am complaining, cuz it’s a grind and it’s annoying. I figure I’m allowed a little bit of whining, right?

Rollercoaster ride March 22, 2014

Posted by Judy in Musings.
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Nothing is ever simple with me. I’m always the “interesting” case. After my experiences of the past two days, I’m quite ready to let someone else be the “interesting” case and to just be a plain, old, boring patient. Thankfully, it looks like I’m headed in that direction.

My roller coaster of an experience started when my alarm went off at 4:45 am on the 20th. I had to be at the hospital at 5:30 for a 7:30 am surgery. The intake nurse was quite nice and chatty, so that was a good beginning to the day. I asked her to not take my blood pressure in the left arm since I’ve had lymph nodes removed, so she gave me a limb alert bracelet, that way every other person would know that limb was off limits. Everyone has ended up taking my blood pressure in my leg, which was new and weird!

limb alert

Anyway, she felt really bad having to start an IV without using any numbing medication (allergic to Lidocaine). It could have gone really poorly for me given that my vein kept trying to roll and she was having a hard time wrangling it. But, as a testament to her skill, she managed to get the IV started without causing me mass amounts of pain. Hooray, for skillful nurses! The anesthesiologist came by around 7:30 and we discussed airway management. The pre-op doctor put a note in my chart that I was interested in an LMA, so the anesthesiologist was prepped for that discussion. Her feeling was that this surgery would be longer, so she was more worried about doing an LMA since there was an increased chance of throat secretions ending up in the lungs, and so her preference was to do the endotracheal intubation, with a smaller tube. I was comfortable with that once I knew that she understood the importance I placed on my vocal cords.

About 15 minutes later, the OR nurses came to get me and wheeled me back to the surgical suite. (Sounds luxurious, right?!) I didn’t notice much as I was being wheeled back the first time I went in for surgery (the lumpectomy), because I was busy chitchatting. This time, I noticed the smell. The instant we went into the surgical/sterile wing, the smell was very clean, almost like a bleach type smell. When we entered the actually operating room, it was FREEZING! Yikes! The nurses had warned me, but this was way more extreme than what I was expecting. Fortunately, they gave me several heated blankets and that kept me nice and toasty.

My reaction upon entering the room was MUCH calmer this time. I actually noticed everything and everyone around me. I managed to wave and flash a big smile to the resident doctor and the nurse. I said “hello” to the CRNA (certified registered nurse anesthetist), then I wanted to verify that she had the same info as the anesthesiologist. To my surprise, she said, “Yes, we’ll be using the LMA.” Uh, what?!?!? I wasn’t complaining, mind you, just pleasantly surprised. So yes, no tubes for me, and that made me VERY happy! I also mentioned that I didn’t want Morphine, as I didn’t tolerate it well during the last surgery, nor did I want Versed. She agreed to all of that, then they set me up on the super narrow surgical bed. (I still can’t get over how narrow those crazy things are!!) Next came the pain meds through the IV (fentanyl) and then the mask for oxygen which eventually was switched to a gas that put me to sleep. This time, I was determined to be aware and cognizant as long as possible. I didn’t make it that long before I just wanted to close my eyes and sleep, though!

I woke up sometime later in the recovery room and heard the nurse saying something about “set up the morphine pump.” That woke me right up.
“Excuse me, I had requested to not be given any morphine. Could we please discontinue this?”
The nurse apologized and immediately stopped the morphine and switched me to fentanyl. I then got some ice chips and then realized that I was shivering, so they gave me a bunch of blankets. I must’ve fallen back asleep, because I don’t remember being wheeled from recovery to my hospital room. Hubs met me at the room a few minutes after I arrived at around noon. He said that Dr. Ray had reported that everything had gone well. It would be 24 hours before the port could be used, but there were no surprises.

So all in all, it went fine.

“What?” you say. “That’s it? Where’s the rollercoaster?”
Here is where the storytelling gets tricky. The previous section of the story all took place and was stored in a nice, orderly fashion in my brain. The rest of the story is a jumbled mess and I’m not really clear on what happened when. So I thought it best to separate the events by category rather than trying to tell them in a chronological order. I’m sure the fogginess of my brain was directly related to the pain medication. So, let’s start there.

The bottom line is this, I should never, ever become a drug addict. I would be a terrible one: always falling asleep, throwing up, feeling totally off. Well, maybe that’s the way you are supposed to feel, but I can’t imagine why one would want to do this to themselves on purpose as it’s not a pleasant feeling for me.

In the words of the surgeon, I had a very “marked reaction” to the narcotics. Basically, it made it so that I couldn’t keep any food down. Now I have to say, throwing up is my least favorite thing to do. There are so many other unpleasant experiences I’d rather endure rather than vomiting. When you accompany that with diaphoresis (sudden and profuse sweating) and weakness, you get a miserable time. This happened to me three times between 4 and 11pm. At first I thought it was just that I had tried to eat too soon. I have been NPO since midnight, so I was hungry and ordered rice and lasagna. The rice was too dry and one bite of lasagna proved to be too much. Shortly after that, the first upchucking took place. It was so violent, I actually expected it to come out my nose at the same time. Yuck! Not fun! (Remember this part for a future story about the residents.) But, once the event had passed, I felt fine, as if nothing bad had happened. The nurse gave me a medication called Fenergan which is an anti-emitic. Within a few minutes of being given that intravenously, I was so, utterly exhausted. I took a little nap for an hour or so.

After a few hours of feeling decent, I tried food again. This time I ate some Korean dumplings DH had brought me, as well as a veggie burger and a popsicle. I figured I was safe since I didn’t feel nauseated after just one bite. DH came back from having gone home to eat and put the kids to bed. He helped me up to the bathroom and then I figured I should try to go on another walk around the floor. (I had done a half lap about an hour after arriving.) We started to go and then it started creeping up on me: the diaphoresis and the weakness and then the “oh no! I’m going to lose it!” We managed to get back to the bed where I felt horrid, was breathing super fast and wishing this feeling would just go away. And then I threw up for the second time, which was equally as violent as the first time. But again, once the event passed, I felt better. Since the first medication didn’t seem to be working, they gave me another anti-emitic called Zofran. Another hour or two passed during which time I didn’t eat any food and only drank water. I thought I was in the clear, and then the diaphoresis kicked in followed by the other symptoms. I didn’t think it was possible to have a more violent vomiting episode. I was so very wrong! I felt sorry for my roommate, having to listen to me wretch away. And really, wretch is the best word to describe it. I was gasping for air, coughing, and trying desperately to not choke on my own vomit. (Sorry, I know that’s gross!)

Up until this point, I had been using the PCA pump for pain meds. The meds are hooked up to a pump with a button that I could press every 10 minutes for pain relief. At this point, since neither of the anti-emetic medications seemed to be working, I realized that the culprit must be the pain meds. Hence, I quit using them for the rest of the night. Wouldn’t you know it, I quit throwing up. So again, the moral of the story, I’d be a terrible druggie!

Somewhere along 4:30 pm on the 20th, I happened to glance down at my dressing and chest and did a double take. I had cleavage! Does anyone else see a problem with that? Yeah, I thought that cleavage was now a thing of the past. So I took a closer look and discovered a giant lump, maybe a bit larger than a clementine, on the right side of my chest. I called the nurse and she said, “Hmmm, that doesn’t look right! Let me talk to the doctor.” A few minutes later, one of the residents came in and took a look, also proclaiming that she didn’t like the looks and she would need to talk to Dr. Ray. His opinion was that it could be a hematoma (collection of blood outside of the blood vessels) forming and he might need to do another surgery to remedy that. In the meantime, I was to apply heavy pressure to the area. To that end, the nurses applied a pressure fitting bandage so that the downward pressure would hopefully help the hematoma to resolve. They also brought me two water-filled IV bags wrapped in a towel and set that on the swollen part. And no, it did not feel good!

Dr. Ray came in to see me the next morning around 8am. His first words were, “I’m sorry you had such a crappy night!” He went on to say that this was definitely not a foreseen situation. Based on what he had seen at the end of my surgery, there were no indications that I would develop a hematoma. By this time, the swelling had gone down significantly, but he was still able to feel something there. His main concern was that the hematoma was surrounding the port and he didn’t want to risk any future complications. So back to the OR I went. It actually took about 3 hours for me to get there, but I did get taken down to the surgery center where I was actually able to get in two long naps, which is much more than I can say for being on the 7th floor, what with the hourly interruptions!

Again, I had a very accommodating CRNA who used an LMA, did not use morphine and made a note that I wanted neither morphine nor fentanyl in the recovery room. She had to use fentanyl during the surgery, it was either that or no pain control. While I have a really high pain tolerance, surgery without pain meds would be nuts. To help with the nausea, she loaded me up with Zofran and something else whose name has escaped my mind. I was also pleased to see the same nurse that was with me during the lumpectomy. The surgery was supposed to be a quick 20 minutes, but ended up being more like an hour or so. He didn’t find anything obviously causing the leak, so it took him longer to redevelop a plan and finish up the surgery. All in all, it was successful since I no longer have cleavage . . .hooray! (Who ever thought I would be cheering about that?!!)

I’m at a teaching hospital, which means that there are many med students and residents that are involved in the care of patients here. Sadly, not all of those interactions have been positive. The first resident I encountered was in the operating room, and I saw her again later the same day when she came to check on me. She was lovely, just lovely. The next two residents crossed my path the afternoon of the first surgery. Remember that first upchucking episode? Yep, that’s when they came in. I recall seeing the male and immediately thought, “Well hello, Mr. Know-it-all!” He just exuded that attitude. He stood with his hands not on his hips, but in the much more aloof BELOW the hip position, and he was wearing a fleece jacket with the name of the hospital and the local Big 10 team logo, as well as his name embroidered on the front. Apparently, he was way too cool to wear a white lab coat! (And yes, I did manage to notice all of this mid violent vomiting. Talented, I know!)

Anyhow, DH said that while I was otherwise unavailable, the two residents (there was Mr. KIA and a female resident) were moving towards me wanting to examine the surgical site. DH basically told them to go take a hike and come back later. They both left in a huff. Excuse me for puking and ruining your day! (Insert giant eye roll!) I had the misfortune of dealing with both of the residents the following day. But before that, two other residents stopped by separately during the night and early morning. They both were great, very thorough in their explanations and gentle in their approach. The whole mob of residents descended on me at about seven, and here is where the two residents from the deep reared their ugly heads again. The female came over and wanted to examine the surgical site, and was flummoxed when she saw the giant toga-like pressure bandage that the night nurses had place on me.

toga dressing

After yanking on the binder (remember that sexy thing from the lumpectomy?) and making me rather uncomfortable she says, ”Uh, we are going to have to cut this!”

“Actually, you can unravel it enough to be able to see the surgical site.”

”No, I think it’ll need to be cut, we won’t be able to see anything.”

”Well, SHE managed to do it earlier this morning” I said as I pointed to the resident that had been with me in surgery. (As an aside, why is it that so many health professionals treat you as if you have no idea! I don’t know how many times I’ve said something to assist with my care, the “professional” blows me off, then ends up doing what I suggested! So aggravating!)

So the good resident helped the other resident and it was all well and good, until Mr. KIA struck again. He leaned in and started poking and prodding away, with his bare hands. DH immediately asked if he had cleaned his hands, to which he huffily replied “I wash them in between each patient.” Well, that’s great, but how was I to know that? And how do I know you didn’t touch the wall or the bed or some other contaminated thing before shoving your hands into my surgical site? Grrr!

Suffice it to say that we didn’t have much appreciation for the residents as a whole and mentioned it to the surgeon who promptly asked us to remember the incidents and share them with him in detail at our follow up visit. In the meantime, he banned Mr. KIA from dealing with me. Funny thing is that we didn’t even say his name, but the surgeon knew right away who we were talking about! I was out for a walk around the unit after Mr. KIA had been banned and I happened to see him in the hall . . .. he seemed all awkward and walked stiffly past me. I was amused. Maybe I shouldn’t have been, but I was!

As I was finishing up this post, I had another “Holy cow, really?” experience, this time with the nurses. I noticed that my wrist was getting swollen and I’d also noticed a little blood just around my IV. This didn’t seem like a good development. The nurse came in and he determined that it was likely okay, but was going to change the dressing. During the course of that jostling, the IV was compromised, so he had to remove it and he sent in his charge nurse to insert the IV. Because of the swelling at my wrist, she had to insert the IV in the crook of my elbow. She puts her gloves on, then puts her hair in a ponytail. Now maybe this isn’t an unsafe practice, but DH didn’t appreciate it so he made some snide comment, which prompted her to change her gloves. Then she cleaned the area with alcohol, rubbed with the glove to check the vein, then proceeded to tear one part of the glove off to feel with her finger. So she’s tapping the vein with her bare finger. Now, I realize that I only made it through two semesters of nursing school, but we were taught that when you are doing anything with needles, you don’t want to touch the patient’s skin with your own skin. I didn’t think the nurse’s actions were particularly safe, but didn’t say anything. She then proceeds to insert the needle and dig around such that she blows the vein. Whoops! As she is getting ready to try again, I ask her about the “tearing the glove” bit.

Her response “The gloves are really there to protect me from the patients and their bodily fluids.”

“Okay. So then it’s not a problem for you to touch my skin with your bare hand? And if that’s no biggie, why bother with the gloves anyway?”

“Well, it helps me to better feel the vein, and if I do touch, I”ll wipe the skin again. (She actually didn’t do this last time, so my confidence in her words was low.) But I can put on new gloves if you’d like.”

“Yes, please.”

And then I got blown vein number two. There must be this rule that after two attempts, you get someone else to try, because after apologizing profusely, she went off to find someone else to try to start an IV.

As I was waiting, I decided that a) I was going to refuse the medication they were wanting to give through the IV (Pepcid, my stomach was fine, I didn’t need it anymore.) and b) I wanted to know if I really needed the fluids from the IV anyway. I was drinking lots of water and was plenty hydrated. The upshot of the matter is that I got them to call the resident on call who agreed to leave the IV out so long as I stayed hydrated.

And now, for the moral of this very long tale: You MUST advocate for yourself. Seriously, friends. Most people out there aren’t going to do it for you. You MUST speak up when you have a question or something makes you uncomfortable. Just because someone has a MD or RN on their name badge doesn’t mean that they are infallible or that they are making the right decisions. And most importantly, don’t feel bad or apologize for your advocacy. You owe it to yourself!

And finally, a little surprise popped up last week and I didn’t have all of the info until recently to be able to share. I’ll attempt to be brief, no promises, though =)
I had an echocardiogram done last Friday to make sure my heart was working fine and to have a baseline since one of the chemo drugs I’d be getting is cardio toxic. During my pre-op physical on Monday, the doctor shared informed me that test results showed that the ejection fraction of the left ventricle was borderline low. This means that it’s not squeezing hard enough. My rate is 48% and normal is 55-65%. I did a follow up EKG (measuring the electrical activity of the heart) which was totally normal, and then I had a stress test (echocardiogram followed by 6 minutes of treadmill walking to get the heart rate up to 155bpm followed by another echo), which also came back normal. So, if I wasn’t going to be getting chemo, this little zinger probably wouldn’t matter. But, I’m guessing I probably don’t want to blast my heart when it’s already working suboptimally. *sigh*
I’m choosing to not worry about that for now since chemo is 4 weeks away. Today, my focus will be on getting rest and being discharged from the hospital.

Topless March 9, 2014

Posted by Judy in Musings.
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My entire experience at Mayo would have been simplified by me running around topless. Everyone wants to do an exam, and then you are stuck sitting around in a totally crazy-looking and seriously ill-fitting gown, cape or poncho. Being topless would solve the ill-fitting problem as well eliminating the need to constantly be changing in and out of your clothing. Then again, I’d be topless, which would garner all sorts of stares and gasps. So maybe that topless idea should get scrapped!

Our final day at Mayo was a full one. I only had two appointments, but each appointment took an hour and a half, plus waiting time. (As an aside, the biggest benefit of getting treatment at Mayo is that the doctors actually take their time with you. There’s none of this rushing off to the next patient. They asked questions to get to know me as the patient as well as get to know DH, and they were always saying “Is there anything else I can answer for you?” I think all physicians could improve their service by being less time-driven.)

I had pretty high expectations for the visit with the radiation oncologist as I figured a place like Mayo would have some pretty tricked out radiation toys to work with. At the time, I was completely shocked to find that they don’t do heart gating. (Delivering the radiation dose when the heart is out of the dose field based on your heartbeat.) In retrospect, I think that we may have a misguided idea of how our local hospital delivers radiation to left-sided breast cancer patients. Mayo does a breath-hold technique whereby the patient takes in deep breaths, thus expanding the chest wall and moving the heart out of the way. Now that I think about it, it’s quite possible that Carle does it that way, too, and we just understood it differently. In any case, I don’t see any reason to do radiation therapy in Minnesota since their toys don’t seem to be more advanced than the ones available locally. I will say that the Mayo radiation oncologists (the resident and the “real” doctor) were pretty great. They suggested that I might look into proton radiation rather than the traditional because the damage to my lungs would be greatly reduced. Being a singer who is accustomed to using the full capacity of my lungs, I would notice even a slight reduction in capacity due to scarring. This isn’t something I had previously thought about, but definitely appreciated the doctor putting the bug in my ear.

They also established that I am what you would call an “interesting case”, which is something that no-one ever wants to be. This came as no surprise to me as every step along this journey has afforded me the dubious honor of being “in the minority”, “interesting”, or “not textbook”. Let’s look at all of the ways, shall we?

  1. I got breast cancer while lactating.  Only 3% of breast cancers fall into this category.
  2. I got breast cancer at a young age.  Only 5-10% of women with breast cancer are under age 40.
  3. I have lobular breast cancer, which accounts for only 10-15% of all breast cancers.
  4. I have pleomorphic lobular, which account for only 1% of all lobular cancers.
  5. I found the cancer early, while it was still in an early-ish state, which is quite uncommon.
  6. I had positive margins after surgery.  Nationally, this happens to 25% of patients and locally it happens to 3%.
  7. I have two involved lymph nodes.  This means that I neither fall into the “definitely need radiation” camp (4+ involved) nor the “nope, don’t need it” camp (no nodes involved), thus making me an “interesting” case.

Speaking of lymph nodes, there seemed to be a bit of a disagreement as to what to do about the lymph nodes. The surgeon and med oncologist felt that an axillary lymph node dissection (removal of all of the lymph nodes in my left armpit) was necessary because of the aggressiveness of the cancer, my young age, and the diffuse manner in which lobular cancer spreads.  The radiation oncologists, on the other hand, felt that a full dissection could possibly be overkill, especially if radiation was going to be applied to the axillary area.  They felt that a lymph node exploration would be useful.  In this case, a few nodes would be removed during surgery which would immediately be sent to pathology who would do an analysis and return the results while I was still in surgery.  If the nodes were clean, then no further nodes would need to be removed.  If a high percentage were cancerous, then the rest of the nodes would be removed.  This method really makes more sense to me, but at this point, the Mayo radiation oncologists are the only ones that agree with me.

The medical oncology fellow not only gave his opinion on the necessity of lymph node dissection, he was also very frank about the fact that this cancer was a bad actor and that I needed to be very aggressive in my treatment approach, even if that meant some things were overkill.  It took me aback for about half a second, and then I appreciated his frankness.  He also gave some very specific info as to what type of chemo would be recommended and how often. It seems that I’d be eligible for the standard drugs: Adriamycin, Cytoxan and Taxol. The first two would be lumped together for 4 cycles given every two weeks, and the last would be given weekly for 12 weeks. It could also be done every two weeks for 4 cycles, but Taxol carries a greater risk of peripheral neuropathy, which translates into issues with my vocal cords, and we all know I’m not down with that. Spreading it out over twelve weeks would decrease the chance of neuropathy.

Dr. Medical Oncologist Fellow also talked about the possibility of doing chemo now, and then finishing up the surgery after chemo. This is something that had also been suggested by Dr. Surgeon as a way to give me more time to think about my surgery options. Both doctors felt that doing this non-traditional approach would also inform as to how the cancer responded to the chemo and could potentially allow for a less aggressive surgical approach.

Prior to the two appointments, we were trying to get the ball rolling to do surgery at Mayo ASAP and then I’d receive chemo and radiation would be locally. After the appointments, specifically the one with the med oncologists, we decided that the intra-adjuvant chemo made the most sense. (Chemo, then surgery.)  We decided to head home to get chemo and then we’d contemplate which surgery to do and where to have it done.

This was all well and good until Dr. Ray, my local surgeon, returned my call from earlier in the week while we were driving home.  I had originally planned on talking to him about lymph node dissection, but instead led with what we had ultimately decided:  chemo, then surgery. At the end of our lengthy conversation (which was briefly interrupted because I ran out of minutes; D’oh!), I was reminded why I really like this surgeon. He’s the perfect mix of “here’s what the research says” and “here’s what my scientific opinion says” and he delivers all of that with pithy clarity in a manner that inspires complete confidence. It’s a thing of beauty, really. (The Mayo surgeon did not possess this quality and was rather slippery and obtuse with her responses.) Dr. Ray didn’t agree with the intra-adjuvant plan mostly because it would present a sparsely traveled treatment path that could be pushing the envelope. (He’s certainly not averse to pushing the envelope given that he did so in recommending a lumpectomy with two tumors.) He also made it clear that doing so would not be following evidence-based medicine. If I chose to follow that path, he would support me, but he felt I should be fully informed. (It should be pretty clear by now that I appreciate being fully informed!) We also talked about lymph node dissection, but I’ll leave that for another post since I’ll be asking him more questions at my appointment next week.  Suffice it to say that the discussion of dissection is probably one of the most important discussions and treatment decisions to date since any little cell left behind in a lymph node could potentially go on a journey and I’d end up with metastatic breast cancer.  As I’ve mentioned before, it’s the metastasis that kills women, not the localized cancer in the breast.  So, stay tuned for more info on that later in the week.

By the end of my conversation with Dr. Ray, the plan had changed, yet again. I decided to do surgery locally first and then do chemo. Even though I feel more comfortable with the anesthesiologists at Mayo, I am leagues more comfortable with Dr.Ray and he understands and supports my vocal preservation interests. He was quite sure that the local anesthesiologist would be willing to do the sizing down method of anesthesia, especially if I spoke to them before hand. Now that I know the proper terminology to use, I feel better equipped to advocate for myself. Not only that, I’m confident that Dr. Ray will advocate for me in the operating room, making sure that my cords are preserved.

So let’s recap: over the course of 3 days, I changed my mind about the treatment plan three separate times.

  • Version 1:  surgery at Mayo, chemo then radiation at home
  • Version 2:  chemo at home, surgery (location TBD) then radiation at home
  • Version 3:  surgery at home, followed by chemo then radiation at home

The only constant in the versions is that radiation would be at home.  Everything else changed at the drop of a hat.  At this point, I’m locked in to version three and thanks to spending a week getting a second opinion, I’m satisfied that it is the correct choice. The surgery is scheduled, it’s going to be a big one, and it’s not a decision I made lightly.  Once I discovered that two potentially problematic lesions existed beyond what had already been removed, a re-excision was out of the question.  I was firmly in the unilateral mastectomy camp.  It then became a matter of weighing the pros and cons of a unilateral versus a bilateral mastectomy.

Having a bilateral mastectomy decreases the chance of getting breast cancer by 90%, especially in those women who have a strong family history of  breast cancer.  (If you recall, eight people in my family have had breast cancer.  I’d call that a strong family history!)  Several factors that could increase the chance of a contralateral breast cancer are a lobular histology, first breast cancer before the age of 50, and a multi-centric cancer.   While a multi-centric cancer has not been confirmed (tumors in more than one quadrant), there is a possibility that disease exists in more than one quadrant and it is certainly multi-focal (several tumors in the same quadrant), in addition to being lobular and showing up before I turned 50.  These three factors, as well as a strong family history, point towards a double mastectomy being more prudent.  If I take Dr. Medical Oncologist Fellow’s words to heart, I need to be as aggressive as possible to come out victorious, which also points to a double mastectomy.

After sifting through all of the information, weighing the pro and cons and realizing that rocking the uniboob wasn’t really my thing, the decision became pretty clear:  double mastectomy.  Over the past day or so I’ve come to the realization that this surgery is going to require quite a bit more preparation.  I’ll need to figure out a sleeping strategy since a mattress on the floor just isn’t going to cut it.  I need to go buy a bunch of button up shirts to wear in the weeks after the surgery.  I should make several special mastectomy pillows for my arms and possibly some sort of apron to hold the drains.  And finally, I need to mentally prepare and say farewell.    I’m sure after meeting with the surgeon on Tuesday, I’ll have more things to add to my preparation list.  It’s alot to take in, but I feel at peace.  I’m no longer mulling over all of the options.  The door has been opened and I intend to walk through it with confidence.

Come March 20th, I’ll be topless.

Surgery day – Part 1 February 13, 2014

Posted by Judy in Musings.
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My day started out at 5:10 when my alarm went off and I dragged myself to the shower, an important step that I couldn’t miss given that I wouldn’t be able to shower for 48 hours. Hubs and I bundled up and headed into the very cold, -10 degree morning. We walked into the one-day surgery center at 6am and I was quite surprised to see a full waiting room. Apparently one day surgery is a hoppin’ place! They took DH’s cell number just in case they needed to get a hold of him, and then gave him a number that corresponded to my case. They had this big computer monitor in the corner, kinda like what you see in an airport, listing all of the different case numbers which were color-coded with where they were in the surgery process (surgery prep, surgery, recovery, etc.)

At about 6:30 I was called back to get vitals taken and to change into my lovely hospital gown. Those things are horrid and fit no-one! I eventually had to tie a double knot because the crazy gown kept coming undone. They gave me a flu shot and placed a hep lock in my arm, then they let DH come on back. We then experienced the first communication breakdown. The nurse said that the people from the Mills Breast Center would be coming to get me for the wire placement at around 7:30. That time came and went, and no-one showed up. Come to find out, the one day surgery people were supposed to take me over. Whoops! Then to top it all off, the transporter didn’t really know where she was supposed to take me. Maybe I was their first breast surgery patient ever. Or, maybe they were just having an off day. In any case, we eventually made it over to the breast center. DH was going to go home to eat breakfast, but he decided to hang out and get a snack at the coffee shop instead.

In the meantime, I was taken back to one of the mammogram rooms. Initally, I was under the impression that the radiologist would be placing the wires using ultrasound guidance. I was wrong. They would be using mammography to guide them. It was definitely one of the strangest things I’ve experienced. I recognized the nurse from one of the previous mammograms and she informed me that Dr. X would be placing the wires. My heart immediately sank as this was the original radiologist that had been so cold and robotic when this whole “you have a mass” process started. I was pleasantly surprised when she came in, though. She was like a totally different person, great to work with, kind and compassionate. She even patted me on the arm firmly as she was leaving and said in the sincerest of manners, “Best of luck to you.” In retrospect, I’m glad it was her doing the procedure and not the other radiologist, who was a male. While I’m sure he would have been just fine,me and my cancerous boob were placed in such strange positions, it just would have been awkward to have a male doing the procedure.

So back to the procedure. I was seated in a tall, padded, wheeled chair. They wheeled me up to the mammogram machine and squished me in there. It wasn’t nearly as bad as the diagnostic mammo, but it was still awkward. They have to be able to get enough of the breast into the machine to see what they are doing, but they can’t have any of the chest muscles in the way. In addition, your arms and head have to be out of the way too, so sometimes I was in a completely unnatural and uncomfortable position. Once they found the proper squishage and took a few pictures, they then located the wire clips that had been placed during the biopsy in December. The next task was to find the exact place where the wires would be inserted. I’m just guessing at the specifics of this next part since I couldn’t really move to see what they were doing. They had a grid that was placed over the breast to help them pinpoint the location. The doctor would call out, “Okay, place it at C-12.” The nurse would then move what she called the “crosshairs” to that location. I’m guessing maybe there was a laser light or something that then showed the radiologist where to insert the needle. Again, this is strictly a guess. Anyway, so she inserted two needles, they took another picture, then I was released. Yes, I was in a squished and awkward position while the needles were being inserted. I’m telling you, it was very weird!

The mammogram machine was rotated and they set it up to take a pic from another angle. More awkward squishage ensued. At this point, they inserted the wires. One was about 5cm long and the other was 9cm long, the latter went into the tumor at 3 o’clock position since it was further away from the surface of the skin. The wires were very skinny and quite floppy, not stiff at all. I didn’t feel anything while they were being inserted (the radiologist gave me a numbing injection), but afterwards, while I was waiting for the surgery, I did have pain from one of the wires. It was like I could feel it just under the skin. I didn’t want to move it, though, for fear of messing up the careful placement.

Once the wires were placed, they wheeled me away from the machine and laid the chair back to give me the injections for the radioactive tracer that would be used in the sentinel node biopsy. (Quick refresher: the tracer is injected just behind the areolar area and it then gets sucked up by the lymph system. During surgery, they use a geiger counter to find the lymph node/s that are the most radioactive.) Generally, they numb the skin with lidocaine. Lidocaine makes my throat swell up, so I couldn’t have any numbing. The surgeon initally said that maybe he would just skip the radioactive and use only the blue dye. I assured him that after having four natural childbirths, I could probably handle a few injections. Also, my BFF who’d had this procedure done back in December had it done without numbing and said it hurt, but only for like 30 seconds, so I felt pretty confident that I could manage. Still, I asked for a squeeze ball, just in case. The injections turned out to be no big deal at all. I didn’t even feel the fourth shot! Honestly, having the hep lock inserted was much more painful. Another nurse who was training was present during the procedure. As I was leaving she said, “Now I’m going to think that all patients should be as calm and as easy as you!” Ha! I guess I was a good patient=)

So that whole process took a little over an hour. They wheeled me back to the one day surgery area at about 9:30, and I thought DH would be coming back in a few minutes. An hour later, when he still hadn’t shown up, I hailed the nurse and asked if I could use a phone, “I have no idea where my husband is.” And here is communication breakdown number two: he was in the waiting room and had been the whole time. They were supposed to notify him when I returned from the Mills Center. Clearly, that hadn’t happened. Alas! All’s well that ends well, though. He came on back, we chit-chatted, he took a nap, I played on FB and we both were VERY bored for the next hour and a half, just waiting. waiting. waiting.

Stay tuned for the second half of surgery day!

Pensive anticipation February 11, 2014

Posted by Judy in Musings.
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I’m a planner and a thinker. I am forever thinking ahead to what is next and imagining, in detail, how it’s all going to work out. What’s this delivery going to be like? How is this road trip going to pan out? What am I going to say when I call the pediatrician? Most of the time, it doesn’t work out the way I imagine it, but that hasn’t stopped me from continuing the imagination game. When thinking about the upcoming surgery, I was pretty sure that I would be in full on freak out mode by now. I even had a partial blog post composed in my head about the freak out. Given that most of my imaginations don’t come to fruition, I shouldn’t be surprised that this time was no different.

But I am surprised. I mean, why wouldn’t I be freaking out.

It’s surgery.

It’s a big deal. Sure, it’s a lumpectomy rather than a mastectomy, but it’s still a big deal.

Instead of being in freak out mode, I’ve been very pensive, almost brooding. I’ve been completely lost in thought for the past few days and I’ve come to the realization that I’m not actually looking forward to the surgery. You would think that I WOULD be looking forward to the surgery as that would mean that something was finally being done about the cancer. But that’s exactly the problem: something is being done about the cancer. Up until now, I could easily pretend that nothing was wrong. Even though there was a flurry of doctor’s appointments, cancer was only the focus during the appointment. Once I left the cancer center, I could effortlessly push cancer under the rug and behave as though life was normal. In fact, the past three weeks since the setting of the surgery date HAVE been quite normal. We’ve gone on playdates, gone to church, done regular grocery shopping and I’ve used my new workout gym. For all intents and purposes, everything was honky dory.

The surgery is a reminder that everything, in fact, is not honky dory. Rather than denoting the ending of this journey, it signifies the beginning.

It will be the beginning of paranoia. What is this pain? Why do I have a headache? What are these marks on my skin?
It will be the beginning of constant monitoring and testing.
It will be the beginning of the uncertainty.

This, is the beginning of the rest of my life.

You may say, “But everyone has uncertainty in their life.” True. Most uncertainly is easy to ignore given it’s ambiguity. Prior to December, I knew uncertainty was there, but I didn’t have to think about it. Now that my uncertainty has been stripped of it’s ambiguity, now that it has a name, there is no chance of snubbing it. I have to face it head on and come to terms with it. I have to come to terms with the fact that there are no guarantees. The apparent early stage of the cancer doesn’t mean that it can’t or won’t come back in a metastatic form. The fact that there is likely no lymph involvement doesn’t mean that I won’t have to endure chemo. The only guarantee is that I have to have radiation. While it doesn’t bring on the same horror as chemo, it’s no walk in the park.

So I’ve spent the past few days contemplating the uncertainty and the lack of guarantees, and acknowledging that my paradigm of what constitutes normal has shifted. The most important realization, however, has been that shifted paradigms are only an issue if you don’t have a solid rock on which to cling. I have faith in the great God of the universe and in His healing powers. I believe in His promise that “anything we ask for in prayer, believing that we’ll receive it, will be ours.” (Mark 11:24) It is by this faith that I’ll hold on as my paradigm shifts wildly about. This faith will help me adjust to the new normal. This faith will hold me up and sustain me.

And so it goes, the beginning of the rest of my life.

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 =)

Who’s in charge here, anyway? January 3, 2014

Posted by Judy in Musings.
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Healthcare in our country is a train wreck. Some people have great coverage. Some people have terrible coverage. Other people think they have great coverage only to find that they, in fact, don’t. Many people think that their doctors are making health decisions for them when in reality, it is the insurance companies. Case in point. Several years I got physical therapy for my back. I had to fill out these questionnaires which then got sent to the insurance company so that they could decide how many sessions I could have. Long story short, they didn’t approve very many, even though the therapist argued with them that my issue would take some time before seeing any improvement. They didn’t care. I didn’t get the sessions I needed and the problem went unsolved. Thanks alot, health insurance!

And then there’s the issue of pre-approval. Even though your insurance technically will cover a particular treatment or exam, you still have to have pre-approval from the company before you get the exam. (Well, you could go ahead and do the exam, but then you would end up having to foot the very huge bill.) You may recall that I was supposed to get a PET Scan to determine the cause of the elevated liver enzyme (alkaline phosphatase). My insurance declined the request stating that 1) my cancer didn’t appear to be advanced enough to warrant the test and 2) I didn’t have a CT Scan showing an abnormality with inconclusive results. Instead, they approved a bone scan and a CT scan. A quick google check revealed that a PET scan can be $8000, a CT scan $5000 and a bone scan $1000. It would seem that the insurance company is making decisions on my healthcare from a financial perspective. It’s cheaper for them to approve the other two tests than to approve a PET scan. Who knows, maybe a CT scan is just as accurate as a PET scan. In any case, when the denial came through, my medical oncologist said, “Okay, let’s do the CT and bone scans, then.”

So I ask, who’s in charge here, anyway? SMH