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Life goes on October 22, 2014

Posted by Judy in Musings.
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Every day, major life-changing events happen to people: birth, death, marriage, divorce, accidents, new jobs. For the people living through the event, life seems to stand still. Or perhaps, it speeds on past. In any case, life goes on for those on the periphery.

Dealing with cancer is a major life-changing event. The magnitude of the change is initially felt in ripples, gently lapping at your feet. Then one day, the enormity of the change, in the form of a monstrous wave, crashes over you, completely unannounced and thus, unexpected. Life continues to flow all around you while you thrash about, your feet frantically trying to find solid ground. At some point, your feet once again touch the bottom and you think, “What the !@#(!&@(# just happened to me?” You are left with the choice to move on, to run away, or to simply stand there.

I’m ready to move on and leave behind or erase so many things, chief among them:

The exhaustion.

The route to the cancer center.

The sporadically functional intestines.

The extra 15 pounds I picked up.

I’m ready to move on.

If you came to the conclusion, based on my blogging silence for the last three weeks, that I had moved on, you’d be partially correct, as a part of me has moved on. Moved on to a new, but familiar job, to a new and improved schedule, to a new season. But notice, I said part of me. It’s the part that can be seen, that is only skin deep. The other part – the part that drives you to do and be and love and live – that part can’t move on. The cruel reality is that I’m stuck. Every day I get up and go through the motions, but I’m really just watching the world go by around me, unable to fully give, yet unable to fully wallow in self-pity. It’s a special kind of limbo. Special, because only those who are there know that it exists. Special, because unlike regular limbo, there isn’t a “known” event that is holding up your progression to the next stage. Special, because when you are there, you have to pretend like you aren’t.

So I’m simply standing here. As I stand, I’m trying to redefine beauty and happiness. Every time I think I’ve found a new definition and I’m ready to get on with it, something snatches me back. Sometimes it’s a random pain on one of my scars. Sometimes it’s the tight muscle in my armpit that slightly limits my range of motion. Sometimes it’s the 2-year old who doesn’t really drink liquids and I think “If only we were still nursing, this wouldn’t be an issue.” Lately, it’s been Pinktober that has been snatching me back. Everywhere I look, pink is shouting at me “Be aware! Breast Cancer is here!” This leads me to think back to last Pinktober, which was when I first noticed the pain. It’s also when I misplaced my Breast Cancer awareness charm bracelet that I had been wearing every October for the previous 6 or 7 years. (I did end up finding it, after the malignant biopsy. And no, I haven’t worn it this year.) Thinking back makes me wistful and crabby. It also makes it hard to look forward.

And so I continue to simply stand here while life moves on for everyone else. I wish I knew how to move on. But I don’t how. I can’t.

Maybe though, this is all part of the healing process. Maybe this limbo is necessary for reflection and contemplation on the happenings of the past year. Goodness knows that it’s impossible to think clearly, let alone reflect while you are in the thick of it. Maybe one has to go through this fiery limbo in order to come out refined on the other side.

One can only hope.

Since I don’t know how to move on, I’ll simply stand here. But as I stand, I”m going to go hold firmly on to that hope.

The haves and have nots September 28, 2014

Posted by Judy in Musings.
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This past year has seen me moving from the haves to the have nots. I started out in the “have breasts” group. I then got moved to “have breast cancer” group soon followed by the “have not breasts” group. Last week, I officially joined the “have not breast cancer” group. While I would rather have been in only the first and last groups, this particular order of events is the next best thing. And really, being counted amongst the “have nots” isn’t so bad. It’s good to know that breast cancer is now in my past and the active part of treatment is over. (I’ll have to take anti-estrogen pills for the next five years, but I haven’t started taking them, so more on that in a later post.)

As for the other “have not” group, well, not having breasts is no biggie and in some regards, life has been made easier by their departure. I’ll neither bore nor horrify you with the deets. I’ll just let you imagine how much easier it could be without “extra baggage”! :D Having said all of that, you may find it surprising that this week, a few new things came to live in my dresser: fake boobs and their holders. Some have asked “Why bother?” The completely vain answer: because I have some shirts and dresses that I REALLY like that I want to be able to wear. Yes, I could wear them senza boobs, but they just don’t look right, kinda like a child wearing their dad’s oversized sweatshirts: comfy, but not flattering.

So, yes, prosthetic boobs. I’m here to tell you that they are weird. There’s no other way to say it. W.E.I.R.D. I’m gonna guess that they are better now than they were 20-30 years ago, but they are still strange. They aren’t exactly jiggly like Jell-O, but they are squishy. They come in several different shapes, some that look NOTHING like actual breasts! They also come in different colors, you know, to match all of the different skin tones. You’d think there wouldn’t be much of a market for them, but you’d be wrong. There are probably five different companies that sell them and they all look just a bit different.

Going to get fitted was a really bizarre experience. For starters, most of the prosthetics slide into a pocket in the bra, so you are putting on a bra that is MUCH heavier than usual. Weird. Then you had the fitters helping to fasten the bra, as if I’d never done this before. Weird. Then came the real test, seeing what they looked like under clothing, and then hearing the fitters say, “Oh, those are great! Very natural!” Weird. I ultimately decided on a company that makes fake boobs with adhesive on the back so that they attach to the chest wall rather than sliding into a pocket. This gives the wearer some feedback so it feels more realistic. Due to the adhesive, they have to be cleaned with special cleaner and a brush after each wearing. Weird. It’s all weird, laughably weird!

Any curious what they look like? I know I would be. I’ll post a pic at the bottom of the post so those of you who are totally weirded out by the prospect of seeing prosthetic boobs can just skip that. ;)

So six months after leaving that group I guess I’m back in the world of the “have breasts” . . . sort of . . . not really . . . . let’s just pretend . . . . or not :D

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Fake boobs, coming right up!

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Riiiiiiigggght

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Here. Weird, aren’t they!
prosthetics

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

Posted by Judy in Musings.
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2 comments

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.
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4 comments

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:

DSC04719

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.

Crickets.

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! :D

The fishnet version
80s shirt

My version
80s shirt my version

The boost September 10, 2014

Posted by Judy in Musings.
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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. ;)

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almost there

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

Zap! August 14, 2014

Posted by Judy in Musings.
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3 comments

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 :D

DSC04598

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 ;)
DSC04599

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.
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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!

Pandemonium August 2, 2014

Posted by Judy in Musings, parenting.
3 comments

My family. Ah, my family.

They drive me bat shit crazy. Yep, you read that right: bat. shit. crazy!

Surprised? I imagine you probably are. Many of you, who I’m happy to call my friends, have over the years said what great children we have, how well-behaved they are, what a great mom I am, what amazing parents we must be to have such great children, etc. Generally, I smile and say “Thank you!” Today, I say, “But you don’t live at our house. You don’t see what I see.”

Pandemonium. Pure and utter pandemonium. All. the. time.

The toddler loves to shout and yell. It was cute when he was an infant. Now, not so much.

  • Add his loudness to the child who, when frustrated, becomes unable to use language and is thus relegated to screaming bloody murder.
  • Add his loudness to the other child who constantly shouts “NO!NO!NO!” when someone is bothering them rather than using calmer language.
  • Add his loudness to the other child who slams doors, knocks over chairs and is generally wild when frustrated.
  • Add his loudness to the parents, who, weary from all of the above anger and shouting, add their own shouting to the mix.

Add all of that together and you have pandemonium.

So you see, if you stepped into my house, you would be tempted to retract all of the compliments about well-behaved children. You would rethink whether or not you wanted to shower me with accolades for being a supermom. You would likely gather your things and make a hasty retreat from the pandemonium, bedlam and mayhem that seem to reign supreme.

Some of you might say, “Give yourself a break. Your family is dealing with the huge stress of cancer right now. It’ll get better.” Our house was bedlam-filled long before cancer popped up in my left boob. I’ll concede that the cancer makes it more stressful, because in addition to dealing with the mayhem, I’m also doing my best to, you know, not die. But, that doesn’t really change the fact that bedlam seems to reign in our house and that I’m going BSC.

Sometimes, who am I kidding, MOST of the time, I feel like grabbing my purse and Kindle and running out the door. I imagine myself having peace and quiet in some idyllic, secluded place for weeks, or months even. But then I realize that I’d return and everything would be the same, and the idyllic vacation would have been all for naught. So I don’t physically run away. I run away inside my brain. I wonder what we did wrong, or IF we did wrong. I wonder how in the world to change the behaviors. I wonder why we seem to be the only ones with children who scream and yell so much. I wonder and wonder and end up feeling like we have failed at this thing called parenting.

And then, the 4 year old will say, “Mommy, watch this!” and proceed to kick up into a head stand against the wall, and then push up into a hand stand. And I’m amazed.

And then, the toddler will run over, give me the biggest bear hug ever and plop a giant kiss on my cheek. And my heart melts.

And then the 7 year old reminds me in very specific detail of an event that took place when he was 2. And I’m astounded.

And then the 5 year old flashes her award-winning smile, the same one she’s been flashing since she was 5 weeks old. And I’m smitten.

And then the hubs plays some crazy game with the babes and they are all laughing and giggling like crazy. And I’m hopeful. Hopeful that maybe we didn’t mess up.

And then the bedlam starts up again and I want to run away again.

A friend posted this on FB just now: “Action is the antidote to despair.” – Joan Baez.   It was as if she posted it just for me.  I’ve realized that running away inside my brain doesn’t help. I’ve realized that I can’t change the behaviors of others.  I’ve realized that grumbling and complaining and being angry about my life doesn’t get me anywhere, except for maybe to the doctor’s office with high blood pressure. (And really, I’m kind of maxed out on doctor’s offices right now!) I’ve realized that the best thing, and really the ONLY thing I can do, is to change MY reaction to the BSC-making behaviors. I have no idea how exactly I’m going to do that, but I’ll figure out a plan tomorrow.  Today, I’ll revel in the fact the end of the pandemonium starts right here, with me.

I’d say coming to that conclusion is accomplishment enough for today.

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: ,
6 comments

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!

Alopecia June 28, 2014

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

The official definition of “alopecia” is: loss of hair, baldness.

Those two are not the same thing.

Initially, I was told that baldness was a sure thing. Once the chemo agents were switched to something that wouldn’t deep six my heart, I was told that baldness was a maybe but that I would have hair loss.

See, they are different.

You cannot be bald without hairloss, but you certainly can have hairloss without being bald.

Frankly, when I heard that baldness was a maybe, I was disappointed. I realize that sounds crazy, but stick with me here. Which would you prefer? A clean, bald head? Or a head with much of the hair missing and just a few tufts remaining here and there? I don’t know about you, but I would prefer the former. To be told that the latter was a possibility didn’t sit well with me.

Since I knew that some hair loss was definite, I cut about 10 inches off and donated it to Children With Hairloss the day after my first chemo. My oldest, who was 6 and hadn’t had a haircut in 3 years, also decided to donate his hair in honor of me. His donation was probably 12-14 inches. We both felt weird with our really short hair for the first week or so. Then we both realized the beauty and ease of short hair and were quite happy. My happiness was short-lived, though. About two weeks after chopping off my hair, my scalp started hurting me. It was so very sensitive to the touch, even just moving my head around on the pillow made it hurt. I had read that this was a precursor to hairloss, so I was prepared for the mass exodus of my hair. After a few days had passed and not much hair had fallen out, I took matters into my own hands. On a lark, I decided to just grab a tuft of hair and tug. Lo and behold, the tuft came out quite easily. Half an hour later, I had a nice little pile of hair sitting next to me on the floor. For the next few days, this was my past time. Anytime I was sitting reading or watching TV, I would pull on tufts of hair. The babes even got into it. The 3 year old really got into it, pulling hair out hand over fist! I found it to be quite amusing.

After about 4 or 5 days, you could finally tell that I had lost a bunch of hair. It was to the point where DH was like, “I love you, but that’s REALLY not a good look for you!” hahahaha. So, my friend buzzed it off for me. Not only did my scalp stop hurting, it also looked soooo much better.

Summer hadn’t arrived and spring had yet to figure out that it was its turn to show its face. This meant that me and my bald head were cold! It also meant that I got to go shopping for scarves and try out the hats that had been made for me. I had fun figuring out different ways to wear the scarves. I did find, however, that as soon as it started warming up, having scarves or hats on my head was waayyy too hot. Now that summer is in full swing, I only wear scarves to my church job and sometimes to church. Otherwise, I just go bald. I’ve been really surprised that people don’t even seem phased by it. I don’t mean friends and acquaintances, I mean people on the street. Sometimes little kids give me a funny look, but mostly, I’m treated totally normally. I guess I thought I’d get a lot more funny and uncomfortable looks. I’m okay with the lack of said looks, just surprised.

Since this post would be useless without pics, here a little sampling.

Post-hair donation and bald (Note the very pale part of my head that had been hidden under hair for my whole life. That is now tanned, but I did sort of feel like my really pale head was like a little beacon, leading the way!)
hairloss

The progression to baldness
hairloss progression

The scarves – Not all of these attempts were successful. I really like how the turquiose one turned out, but I haven’t been able to replicate that. Alas!
hairloss scarves

Sometimes I wonder if my hair actually would have fallen out if I wouldn’t have been pulling on it. Maybe I wouldn’t have gotten to the point where I’d get out of bed and a pile of hair would just be sitting on the pillow. Then again, I didn’t really want to wait around for that to happen.

My hair does grow back a bit in between cycles. DH and I have been amused to discover that the grey hairs are the most tenacious. They grow the fastest and were the last to fall out. DH was also surprised so see how many grey hairs I had. I knew they were there, hiding under my mountains of hair. Now, he knows they are there, too. I’ll be curious to see if my hair grows back the same color and texture and to see if I end up with more grey hairs than I started with.

Always an adventure around here!

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