jump to navigation

Hyperactivity January 13, 2015

Posted by Judy in Musings.
Tags: , , , ,

I had an appointment with a plastic surgeon last week, and she told me two things:  “You’re so cute!”  and “You’re my hero!”  I had to laugh because I see myself as neither cute nor heroic, but hey, I’ll take it!  Now some of you are still hung up on the words “plastic surgeon”, wondering why in the world I would need to have an appointment if reconstruction was off the table.  it’s still off the table . . . .the options haven’t changed and I still think they are all terrible.  Although, I CAN change my mind at any point in time:  today, 2 years from now or even 25 years from now, for the moment, still no reconstruction.  The purpose of the visit was to deal with my port scar, which is behaving badly.

The original scar, from when the port was placed, was a nice, thin line that didn’t really bother me.  The new scar, from when the port was removed is a whole other story.  About a month after the surgery, I noticed that the scar was painful, it looked quite pink and big, and I felt like there was something inside poking me.  Here’s what it looks like:


I went to see the breast surgeon and the verdict was that the scar was behaving badly, it had hypertrophied.  This means that for whatever reason, the collagen in that spot went bonkers and laid down waayyy too many fibers, which made the scar expand.  The location of the scar is tricky because it’s in a place (probably the only place) where I have zero body fat, so it’s easy for scars in that area to have issues.  His initial recommendation was to use a steroid cream, but after further thought, he decided that it would be better for me to see a plastic surgeon.

And so, 3 weeks later, I found myself sitting in the plastic surgeon’s office, peeling off my shirt to show her the scar. Her reaction was hilarious:  “Oh!  You didn’t do reconstruction?”

“Nope.  I think my chest is ugly, but not enough to do anything about it”

“Well if you think it’s ugly, let me make it beautiful.  You’ve come to the wrong place for no reconstruction.”

I thought to myself, “You’re barking up the wrong tree, lady.  No way, no how are you going to change my mind!”  But I humored her and we talked about why I didn’t do it (more surgeries = more fights for no intubation, potential complications, no good options that don’t affect singing).  She eventually said, “Okay, so you really DON’T care.”  Righto!

Lest you think she was an ogre trying to bully me, she wasn’t.  She made it very clear that she would respect my decision, and that she would be available at any time to discuss options if I ever changed my mind.  If I do, she’d be the surgeon I would use as I liked her as a person, and based on her explanations, she’s is equally as thorough and careful as the breast surgeon.  So I’ll just tuck that into my back pocket. (As a little side note, she is the third medical professional to tell me that the mastectomy scars and radiated skin look “really good.”  It’s a scar, so I think it’s unattractive, but since three people have told me otherwise

, maybe, in the grand scheme of mastectomy scar and radiated skin, mine is in good shape.  And for that, I am grateful.)

But, back to the scar.  She also recommended steroids, but she preferred injection rather than a topical application. I don’t fully understand the mechanism, but I can already see and feel a difference:  the scar is no longer pink, and I haven’t gotten the stabbing pains in a few days, so that is good.  I’ll have to do at least one more injection, possibly two.  if the scar doesn’t get it’s act together after that, then the next option is to have a revision surgery which would involve cutting out the old scar and sealing it up again.  “But what’s going to keep it from going all hypertrophic again?” you ask.  Good question!  She would inject steroids into the area immediately after the surgery to help keep the collagen at bay.  I’m hoping it won’t come to that, though.  To that end, I’m supposed to massage the scar 3 times a day for about 15 minutes.  I can tell you right now, that doesn’t happen.  It gets about 2-3 minutes in the shower, and a few quick massages here and there during the day, but it’s definitely not 45 minutes worth.  Besides, about 98% of the time, the scar is covered up with a silicone patch that is supposed to help the collagen fibers lay down nice and smoothly.  This is what is looks like:


See that price tag in the corner?  Yep, it’s ridiculously expensive!  Fortunately, it is reusable and my scar isn’t huge, so it should last me a long time.  Anyway, massaging with the silicone patch on is tricky, so I don’t do it.  I’m banking on the fact that having the patch on constantly will be more effective than massage.  We’ll see!

The fun never ends!  Keeps me on my toes, I guess =)

Music . . . . . the air I breathe . . . .the remix September 20, 2014

Posted by Judy in Musings.
Tags: , , , ,

Six years ago, I started this blog with a post about music. Given the important role that music plays in my life, the lack of music-related posts would seem incongruous. In reality, it’s not. Music is constantly around me, running through me, inspiring me, challenging me. It’s like air. We all breathe it and do so without thought. It would be odd to be constantly talking about something that is second nature to us. Constantly blogging about music would be equally as odd for me given that music is completely interwoven into the fabric of my being.

Music was a constant in our home growing up. We listened to classical music during breakfast, and I marveled at my dad’s ability to identify so many of the pieces. We always sang at family worship time. There was always music playing in the car, complete with my dad conducting his imaginary orchestra. Music was everywhere. In middle school I played in band. When I went off to boarding school, being involved in band and choir was a given. I also discovered that I was able to do my math homework more efficiently when I was listening to music. College saw me pursuing a degree in music, which came as a surprise to no-one. My love affair with music continued into grad school and upon completeion, I felt a huge sense of accomplishment knowing that I was making a living teaching music. How lucky I felt to get to be surrounded by music every. single day. and to get paid to do it! The coming of parenthood caused me to greatly reduce the amount of time I spent getting paid to do music. But music was still within. I found myself marveling my children with my ability to identify classical pieces. We sang at family worship time. I would wave my arms and conduct my imaginary orchestra and I’d amaze and stupefy my little humans when I’d pretend to be on a musical theater stage. I discovered that one of my children is like me in her inherent love of music, exhibited by her constant singing and humming. Music was and always had been everywhere. Music gave me breath.

Lately, I haven’t been breathing. This statement is worsened by the fact that I didn’t even realize it until the breath suddenly, and forcefully rushed back into my lungs. Radiation has been the worst part of this entire process. Having to lay still for inordinate amounts of time. Having to do it every single day. Having my days turned upside down for 6 1/2 weeks. Being utterly exhausted. Feeling completely overwhelmed. Having lots of time (while having to lay still for inordinate amounts of time) to contemplate what has become my life, wishing that it wasn’t so, second guessing my decisions, and feeling deeply saddened by the changes. Every day was a struggle. The path grew more and more narrow, making it harder for supporters to hold my hand, which in turn left me feeling exposed and abandoned, moving forward only because it was required of me. The end of the radiation road couldn’t come fast enough and there was much rejoicing on Tuesday when that end was reached. The subsequent three days were spent slowly trying to regain my balance, find my purpose, reclaim my life.

As you can imagine, these are not things that can be found or regained overnight. I fully expect it to take several months, but this task will be much easier, now that I’m breathing again. My breath was given back to me in an unexpected manner today by a group of young men from Malawi, who sang with such purity. By one of my former students who sang with as much passion and conviction as she did when she was in high school. By the choir rehearsal that uplifted me, in spite of not being able to use my voice much. By my toddler, who mimicked the interpretive dance and sat enthralled by all of the music. By the praise team at church, who brought it song after song after song.

Today, I started breathing again.

Today, I was reminded that music is the air I breathe.

Grazing September 11, 2014

Posted by Judy in Musings.
Tags: , , ,

My afternoon at the cancer center today could be divided into the good and the bad. The good was that the tech was right. This second part of radiation, the boost, is MUCH easier to manage! I practically skipped out of there today. They are treating two different areas as the mastectomy scar wraps around to the side of my body. One field is from above and the other is to the side. Each dose lasted roughly 16 seconds. They came in to readjust the machine in between the doses, and that was it. More time was spent getting everything set up than in delivering the dose. Four more days of this will be a piece of cake!

I also found out that I can stop using the special gel (Radiagel) once the radiation treatments are done and I can switch to using good moisturizers, and most importantly, deodorant! Yes, people around the world are now cheering!

The bad news is bad, but I’m hoping that I’m just blowing it out of proportion. Two days ago, I noticed that I had alot of junk on my vocal cords, causing me to be constantly clearing my throat. I’m not generally a throat clearer because it’s bad for the cords. The junk was too excessive, though, and at times would make my voice really gravely and creepy, so clearing was a necessity. Then, last night I noticed that swallowing was a little weird. I wouldn’t go so far as to say that I had trouble swallowing, but it certainly felt like I was swallowing past a lump. I also noticed this last night:


Anyone see a problem with that?

It’s a little island of radiation-induced tanning . . . . right on my vocal cords. I tried not to freak out when I saw it, but decided that I’d be having a frank discussion with the radiation onc the following day, which was today. He asked how I was.

Me: Well, my throat is not good.
Doc: Sore throat, difficulty swallowing?
Me: Sort of, but mostly there’s a lot of junk on my cords and I get hoarse very quickly. This is a problem as my job is singing. And, I noticed this. (Pointing to the radiation island.)
Doc: Oh, yes, that’s from the radiation. In order to get to nodes, part of the radiation was grazing your left vocal cord.


In my brain, I’m thinking, “What the !@#(*!&@)(#*! Why wasn’t I told this?

Me: (trying valiantly to remain calm) So is this a permanent situation, or how long will this last?
Doc: Oh, I’d say maybe a week to 10 days.

Okay, I can handle that. But still. He absolutely should have mentioned this to me. I think the fact that my cords are very important to me must have been lost on him. I don’t really know how that happened since I have talked to all of my providers, ad nauseum, about the need to preserve the cords. I talked about it so much, I should have had t-shirts made up or something! Had I known that my cords were going to be grazed by radiation for the past 6 weeks, I certainly would have spoken up and asked for a modification in the treatment plan. Fortunately for the doctor, I like him quite well, so I kept it mostly together. I really wanted to wallup him upside the head, though.

Doc: So you sing every day?
Me: Well, I get paid to sing every Sunday, and theoretically I should be practicing daily. So, yes.
Doc: Hmmm. Well . . .

I’ll interrupt the dialogue here to say that I think my facial expression and body language must have shown my annoyance and frustration a bit, as he then mentioned that he could possibly give me a steroid to reduce the swelling.

Doc: Is that something you’d be interested in?
Me: YES!
Doc: Now, the steroid brings other side effects, like making it hard for you to sleep.
Me: Oh, I always have trouble sleeping, that’s no biggie.
Doc: Really?
Me: Uh, yeah. I have four small children, sleep is a joke around our house. The steroids will be fine!

He also gave me a recipe for a gargle to help with, well, I”m not exactly sure what it’ll help with, to be honest. But it’s water, lemon and baking soda, so it can’t hurt.

Anyway, then he tells me about vocal cord cancer patients who have to undergo high doses of radiation directly to their cords, who then have the trauma of having the quality of their voice change. I just raised an eyebrow and looked at him.

Doc: I hope the quality of your voice doesn’t change.
Me: Yeah, me, too! (And I think to myself, it had better not change!)

Again, he must have read my body language because he then said, “I’m sorry about all of this.”

So, now I’m taking Prednisone, gargling some concoction and hoping that in 2 weeks time, all will have gone back to normal. Let’s just say that it’s a good thing this vocal issue turned up on the last day of x-ray treatment. If I’d discovered it earlier, I would’ve been hard-pressed to want to continue with that portion of the treatment!

I just keep telling myself: It could be worse. It could be much worse!
For example, I could be relegated to wearing these infinitely sexy shirts forever! 😀

The fishnet version
80s shirt

My version
80s shirt my version

The boost September 10, 2014

Posted by Judy in Musings.
Tags: , , , , ,

Today, I completed the 28th radiation treatment, which means I’m done with the x-ray portion of the radiation therapy. I don’t think words can express how utterly gleeful I am to be done with that portion. It was tortuous. It was only 20 minutes, but still tortuous. I’ve learned that having to lie perfectly still is not really my forte. In the past 6-8 treatments, it’s been especially difficult and it was all I could do to not just leap off of the table. It became a game of squeezing different muscles in my body to distract myself from the overwhelming urge to move. Tortuous!

Tomorrow, I begin the final five treatments which are different in two ways: 1) the treatment is short, as in, I’m in and out in just a few minutes. (Huzzah!) 2) I’ll be getting zapped with electrons rather than x-rays. So the x-rays penetrate all the way through from front to back, which is why I now have radiation marks on my neck and my back.

Electrons, on the other hand, are very short and don’t go very far as they stay mostly superficial to the skin. As such, I won’t be needing to get daily x-rays to make sure everything is perfectly lined up. (They will be lining up the laser beams with the tattoo landmarks, so no worries that they’ll just be shooting radiation willy nilly!) Because electrons are so short, they have to bring the machine SUPER close to my chest, almost touching it. In order to keep the electrons from scattering all over the place, they’ve created a mold in the shape of the treatment field to guide the electron rays to the correct place. I have yet to actually experience this, but I’m counting on the veracity of the tech’s statements that the treatment is quick and much easier than the x-ray treatment.

Aside from the fact that I won’t have to lay stock still for 20 minutes, I’m also really pleased that my axillary area (AKA – armpit) won’t be receiving any more radiation. That’s the part that has taken the biggest beating in terms of my skin. For the first month, my skin showed zero signs of change. The radiation oncologist kept joking that they must not be turning the machine on! But, on day 20, things suddenly started looking darker, and you could pretty clearly see the area of skin receiving radiation. They gave me a special bandage called Mepilex to put on my armpit to help reduce the friction, which would in turn protect the skin from further breaking down. Because it was in my armpit, it didn’t stick particularly well, so they crafted a really attractive, skin-tight shirt out of this fishnet-looking material for me to wear. It was so attractive, in fact, that upon returning home, I set to crafting my own version of a “keep the bandage in the pit” shirt.

By day 26, some of the skin was SUPER dark and looking quite wrinkly. Today, that skin seems to have peeled off a bit. The armpit skin is stingy and feels better with the bandage on. I also get these sharp shooting pains in the area. Clearly, something isn’t happy in there! Having only had two very minor sunburns in my life, I’m not really sure if what I’m experiencing here is at all similar to a conventional sunburn. Anyway, for those who are curious, here is a pic. If you don’t want to see it, you can just declare yourself done with this post and we’ll catch you at the next post in a few days. 😉



keep scrolling …





almost there





And, here we are. Ladies and gentlemen, my charred armpit!

Zap! August 14, 2014

Posted by Judy in Musings.
Tags: , , ,

My treatment plan consists of four phases. I’ve been through surgery and chemo, so now it’s radiation time. The purpose of the radiation is to get any of the teeny tiny cancer cells that were left behind after surgery, and ones that chemo can’t “get”. My whole body is not being radiated, (thank goodness), just the left chest wall and axillary area, as those were the places where cancer was known to reside. Many people have said that radiation is easy. I’ve heard that it’s better than chemo. I’ve heard that it goes by fast. Well, I’m here to tell you that radiation sucks rocks. Big, giant, acid-dipped, spine-covered rocks! Frankly, I think I’d rather go through four more rounds of chemo than endure radiation. Nope, that’s not hyperbole, it’s the honest-to-goodness truth. Let me tell you about radiation.

Patients who are undergoing radiation therapy are being zapped with high energy particles, like x-rays and electron beams. By doing so, any cancer cells left behind are damaged. This damage doesn’t come about in one zapping, though. It takes a long series of the exact same dose to do the damage. In my case, x-rays are being used and there are 33 treatments planned. That’s every. single. day, M-F for 6 1/2 weeks! Every. single. day.

In order for the treatment to be maximally effective, it needs to be delivered to the exact same locations every time. How do they go about doing that? For starters, I have five tattoos to help line up the laser beams. Then they measure exactly where I need to be on the table, what angle my arms are at, how high my legs are, whether or not my torso is twisted . . .everything is measured every day, down to the millimeter. (This was all set up when they initially took lots of xrays and measurements several weeks ago. After studying all of that, they came up with a plan of how much radiation would be delivered to which areas and where I would need to be in relation to the machine. This is especially important in my case because I’m receiving radiation on my left side, which is where my heart is located. Zapping the heart = BAD!)

Anyway, so every day, I go in and get set up on the table. There is a little ridge right under my butt so that I don’t slide down on the table. My arms are over my head (my fingers can touch) and rest in little arm cradles. My legs are on a leg cradle with a pillow stacked on top and they put a ring around my feet so that they don’t move.
My head rests in this cradle thing, which is comfortable at first, but by the end of the longer sessions (45 minutes), it has ceased to be comfortable and it becomes the cause of pain at the base of my head. In fact, one day it was so bad that I walked out of there with the right side of the back of my head completely numb! (In all fairness, that only happened once, and they are getting faster, so I generally am only there for 20-30 minutes. But it’s still not comfortable!)

So now I’m laying down, and they start to adjust and fine tune to make sure all is nicely lined up. Then they say, “Okay, don’t move! Let’s get started.” At that precise moment, it never fails that my nose starts to itch, or a piece of fuzz lands on my face, and I’m left desperately trying to not think about it. Yeah, you can imagine how well that works!

They leave the room and via a little speaker system, I’m instructed to take deep breaths, as they are using the breath hold method of radiation delivery. (This is actually a big bonus. The radiation is only delivered when I’m holding my breath, so I know just when it’s being delivered and there are no surprises. Prior to starting, I had all sorts of visions of me accidentally twitching just before they delivered the dose, and then I’d get zapped in the wrong place. Poof! There goes my heart! Okay, so here I am exaggerating a bit. But really, it’s pretty nerve-racking to be laying there, feeling like “If I move at all, I’ll get zapped in the wrong place!”) So I’m breathing deeply, and then I’m instructed to exhale and hold the next breath. They take an x-ray with a machine, then the radiation machine is moved directly over me, and they take an x-ray with that machine as well. (In between, I can breath normally.) At this point, they make sure that the x-ray of the day lines up with the x-ray from the inital setup. If things don’t line up exactly, they move the table remotely. Imagine, laying there, peacefully, and suddenly the table jerks to one side. Startles me almost every time!

And now, the fun begins: the delivery of the radiation. I get radiated in six different fields: one from above, one from below, two at a diagonal from above and two at a diagonal from below. Each field gets radiated at a different dosage and a different intensity. The machine is round (at least the part that I can see) and there is a piece of glass that is divided into quarters. Behind that glass are these little tungsten leaves that control the intensity of the radiation that is delivered. Each leaf can move independently from the other leaves, and they create shapes. Here’s my amazing rendering 😀


The first field, delivered from above, looks like a rectangle and triangle sitting next to each other. The pulse lasts about 16 seconds and it’s one of the longest pulses. The second field, delivered from below, is a totally randomly-looking shape with the pulse lasting maybe four seconds.

Another masterful rendering 😉

The third and fourth fields are delivered diagonally from the top right. It starts out looking like a meandering stream. As the pulse if being delivered, the leaves move up to the top. When they reach the top, the pulse is over. These two pulses are about 10 seconds. The only real difference I’ve been able to discern between the two pulses is the pitch the machine makes. The first pulse is maybe an F above middle C while the second is an octave lower. (The first field is the lower sound and the second field is the higher sound.) I’ll have to ask tomorrow why the pitch is different and if that signifies anything important.

The final rendering.

The fifth and sixth fields are delivered diagonally from the bottom left, and I have no idea what shape the tungsten leaves take as the machine is out of my eyesight by the time the leaves are in place. I could turn my head, but then they’d have to redo the xrays and make sure everything was still lined up. Far be it from me to make this last any longer than absolutely necessary!

So that’s it, unless it’s a bolus day. Yeah, there’s more! Every third day, I get a bolus dose. For fields 3-6, they place this squishy pad on my chest which serves the purpose of concentrating the dose closer to the skin. They also add a 7th field, which is delivered from diagonally from the top left. So bolus day takes a bit longer, and is even less fun because the squishy pad smells bad, which wouldn’t be a problem if I wasn’t spending the entire time breathing in deeply through my nose! Yuck!

Anyway, for me, radiation is totally tortuous and I’ve only made it through 10 treatments. I’m not even halfway there! Fortunately, there aren’t any major side effects, aside from tiredness, so that is good. The other good thing, in my case, is that I don’t actually have breasts. I think it would be REALLY awkward to be laying in that position, completely exposed with the girls just hanging out. So, uh, hooray for a double mastectomy, I guess!

(Hmmmm . . .maybe the radiation is getting to my brain!)

The only other good thing I can think of about the radiation is that I have the opportunity to leave the house and drive my fun car everyday. Sometimes I stop at the coffee shop right after treatment and get a treat, other times I run a quick errand, and other times I just drive home slowly, enjoying the solitude. I’m not sure that makes up for the inconvenience and torture brought on by having to lie still in an awkward position, but I guess I’ll take what I can get!

10 down. 23 to go!

The Next Step July 12, 2014

Posted by Judy in Musings.
Tags: , , ,
1 comment so far

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!

Surprise! July 3, 2014

Posted by Judy in Musings.
Tags: ,

I am not cancer free.

This should come as no surprise since there’s really no such thing as “cancer-free” when you have node positive breast cancer. There’s always a chance that some cell got away and then takes up residence elsewhere.

But that’s not the point of this post!

I am DONE with chemo!!

Now THAT’S an annoucement!

I went in to see the oncologist this morning, fully expecting to be receiving chemo #5. During the previous visit before chemo #4, he had said that at this point, we’d take it one chemo at a time to see if we’d continue, especially since there wasn’t any research indicating the difference between four and six chemo sessions. I was totally blindsided when he started out (after asking me how my voice was doing) by saying that the industry standard was four cycles and he wasn’t convinced that six was necessary.

Uh, what? I’ll spare you the deets. Mostly because we were so surprised that we don’t remember them, and partly because they just. don’t. matter! The upshot of the matter is that my labs looks great (blood cell counts are normal, all other functions are normal) and pushing further would definitely be more toxic for me, but the benefit might be negligible. I did make sure to ask him, “So in my particular case, being high risk because I’m young, you are comfortable stopping at four?” He said yes.

So we walked down the hall, scheduled a follow-up with him for two months from now, scheduled an appointment to have my heart checked out again, and scheduled an appointment to meet with the radiation oncologist.

DH and I decided that the oncologist just likes to surprise people. He caught us off-guard when I started chemo. (“Wanna start today?”) And now he caught us off-guard to end the chemo. (“Let’s just be finished. Is that okay with you?) I think it’s sort of funny, and keeps things interesting!

Some of you might be thinking, “That doc sure seems wishy washy! Does he know what he’s talking about?” Although it looks that way, he’s really very thorough and does his homework where research is concerned. When giving out advice, he always mentions different research studies and even talks about studies that are in progress or ones where the results are due in a few months. His seeming wishy washiness comes from the fact that in my case, there are no clear cut answers. If I had come in today saying that I had felt terrible after number 4 and my quality of life was really suffering, it would have been a no-brainer: stop chemo. Since my labs looked great and I felt pretty good, it was less clear-cut. I appreciated that he left the decision up to me. He presented me with the options and information and then allowed me to decide. Actually, if I change my mind, I can call him next week and say, “Actually, let’s go ahead and do two more.” and he’d support me in that, too. I don’t foresee that happening, though! =)

Sooo, next up, a mini vacation for me with my 7 year old and then after that, radiation. The end of the tunnel is near, I can see it! Hallelujah! Thank you, Jesus!

Topless March 9, 2014

Posted by Judy in Musings.
Tags: , , , ,
1 comment so far

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.