Grazing September 11, 2014Posted by Judy in Musings.
Tags: breast cancer, radiation, steroids, vocal cords
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?
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.
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 boost September 10, 2014Posted by Judy in Musings.
Tags: breast cancer, electrons, radiation, skin, sunburn, x-ray
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 …
Zap! August 14, 2014Posted by Judy in Musings.
Tags: breast cancer, radiation, torture, tungsten
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
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.
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 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, 2014Posted by Judy in Musings, parenting.
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, 2014Posted by Judy in Musings.
Tags: breast cancer, ct scan, healthcare, radiation
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?
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%
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, 2014Posted by Judy in Musings.
Tags: chemo, radiation
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, 2014Posted by Judy in Musings.
Tags: baldness, chemo, hairloss, head scarves
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!)
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!
Sleep, why dost thou leave me? June 12, 2014Posted by Judy in Musings.
1 comment so far
As a parent of many little humans, I’ve been singing this song in my head for years! I haven’t had a decent night of sleep for about 7 years. That’s a loooong time to be sleepy! During the times when whomever was the current infant was sleeping poorly, I would daydream about getting a full night of sleep. Heck, I would’ve been happy with six uninterrupted hours! Eight hours seemed like it would be heaven!
The Little Boss was hands down, the worst sleeper on. the. planet! I spent months being so, so tired and thinking he had it out for me. Imagine my shock when, after being insta-weaned, he started sleeping through the night! Clearly, that boy had played us! Now I could see that a full night of sleep was within my grasp. Granted, the whole “YOU HAVE BREAST CANCER” was screaming away at me, sometimes making my nights less than restful, but I had hope that eight hours of uninterrupted sleep were just around the corner.
Imagine my surprise, when I woke up for the first time, EIGHT hours after having gone to sleep the night before. I was surprised because, well, my sleep hadn’t been interrupted. But also surprised because I didn’t feel rested. Not. one. bit. In my daydreams, I had imagined myself posting something euphoric on Facebook: I slept for 8 hours. With no interruptions! I’m a new woman! I had imagined the heavens opening and a chorus of angels singing, “AHHHH!” I had not imagined feeling like I hadn’t gotten any sleep. I had not imagined wishing that I could crawl back under the covers and sleep some more. To say that I was disappointed is an understatement. I consoled myself with the fact that years of sleep deprivation weren’t going to be resolved with one night of good sleep.
Since that night, I’ve had a good share of uninterrupted nights, but not as many as I would like. For various reasons, I either struggle to fall asleep – which is nuts because heretofore, I was always so exhausted that I would be asleep when my head hit the pillow – or I toss and turn and wake up numerous times. Neither of these made for restful sleep. After mentioning it to the oncologist, he said, “Oh, you need your sleep. You have enough on your plate and you need to be rested to deal with it.”, and then he prescribed Ambien. I’m not really a huge fan of taking medications, but when I’m getting pumped full of straight up poison, most other meds seem like child’s play, and so I take them.
I recall seeing commercials for Ambien a few years back. The people taking the meds looked so peaceful. They fell asleep so calmly and woke up just joyous. I’m here to tell you, Ambien is a wicked med and those commercials were less-than-accurate! Yeah, it works to help you sleep. I would, however, argue that being rendered unconscious and actually sleeping are two different things! I’ve taken the medicine about four or five times. I generally take it an hour before I want to go to sleep. Roughly 45ish minutes after taking the med, I feel like I”ve been hit with a mack truck saying “You must sleep, NOW!” Seriously. It’s like my eyes just don’t want to stay open. Not only that, my body just stops functioning. The other night, I was looking for a book in the bookcase when the truck hit me. I had to hold on to the bookcase to keep from falling over. Previous experience told me that I had very little time to actually get in bed before falling apart. I stumbled up the steps and DH was like “Uh, are you okay?” “Yeah, just took Ambien so I should go to bed.” He escorted me to the room, pulled back the covers and I collapsed into bed and was asleep before my head hit the pillow.
As if that wasn’t nutso enough, I took the med again last night. According to DH, (and I say according because I have NO MEMORY of this at all, which is creepy) I was walking all drunken and he asked if I’d taken Ambien. After my affirmative reply, he shepherded me towards bed. Apparently, I brushed my teeth, went to the bathroom, changed into my pajamas and got in bed, falling asleep immediately. Have I mentioned that I have no memory of this whatsoever? I mean, it’s great that I’m falling asleep so easily and all. I’m not sure I like the memory loss and “total inability to walk in a straight line” thing. In addition, I still toss and turn a bunch, so it’s not totally effective.
So, maybe I’ll just keep the medicine around for emergencies!!
Motivation June 7, 2014Posted by Judy in Musings.
Tags: breast cancer, treatment
I haven’t written in a while. Partly because there’s not much to say, but mostly because I just. didn’t. want. to. This has been a common refrain the past few weeks.
I don’t feel like getting up in the morning. (Fortunately, the babes have all been sleeping in for the past few weeks.)
I don’t feel like cooking. (I’m so grateful for all of the friends who have kept my family supplied with food over the past few weeks!)
I don’t feel like blogging.
I don’t feel like exercising.
I don’t feel like doing much of anything. My motivation went on vacation and didn’t bother to warn me that it was leaving. I know, totally rude, right?
In thinking about why my motivation up and left, I’ve come to the conclusion that I’m just tired, emotionally and physically tired. Having a positive attitude has worn me out. I know that might seem odd, but really, it’s so much easier to mope around and do nothing than to make yourself get up and go and be a ray of sunshine and inspiration to others. Going through chemo is wearing me out. It was going pretty well, but things have started to go south, and it makes me so weary to think that I’m only halfway, and then there will be many weeks of radiation and then five years of hormonal treatment. I look at where I’ve been and think “Wow! It’s gone so well, I feel so blessed, I can see God’s hand leading.” Then I look to where I have to go and my faith falters, exhaustion reigns and motivation disappears. I’m know this pit I find myself in is not permanent as evidenced by the teeny bit of motivation I felt to actually blog today.
Many of you have been asking how chemo is going, so this seems like a good time to share an update. The first two chemo sessions went remarkably well. I fell less-than-good for a few days, but it wasn’t terrible, just felt a little run-down. Chemo #3 was a whole other ball of wax. For me to say that I’ve felt good would be a big fat lie. Likewise, to say that it was horrible and unbearable would also be a big fat lie. I was somewhere in the middle, leaning more towards the horrible. I kept telling myself that it could be worse, I could have sores in my mouth, be nauseated or any other number of things. But the fact that it could have been worse didn’t diminish the fact that I just didn’t feel well at all. My stomach hurt. It was on fire. I felt like I had food poisoning minus the vomiting and diarrhea. I mean, yeah for not having it coming out both ends, but still, my stomach hurt. On days 3 and 4 after the infusion, I was parked on the couch, not wanting to move anywhere, sleeping, and wishing the pain would go away. It eventually went away, somewhere along day 9 after the infusion. It got much better around day 5, but not good enough for me to be able to ignore the pain. And not good enough for me to want to actually drink any fluids, so I had to go in and have a liter of saline pumped in because I was dehydrated. As far as I can tell, there’s really nothing that can be done about the discomfort, at least nothing that I tried this time helped. And as an added bonus, a milder version of the stomach pain just started coming and going this week.
So now I’m dreading chemo #4 next week. I kinda want to say to the doctor, “Can we just stop now? Haven’t we done enough?” But I also don’t want to end up with a metastsis because I didn’t hit the cancer cells with both barrels. Sooo, I’ll be having a long chat with the oncologist on Wednesday to find out how effective is chemo really? How necessary are the two extra treatments? Can I do anything else that will produce the same effect (kills the cancer cells/keep them under control) without going through more chemo? Originally he said four cycles for sure and if I was tolerating them well, he’d push to six cycles to be as aggressive as possible. I suppose you could say that I’ve been tolerating the chemo fairly well. Here’s a quick story to illustrate:
I had to see the surgeon because we thought my port had flipped. He walked in and said, “Wow! You look great! How do you feel?” We chit chat for awhile and then he interrupts himself to say, “Have I mentioned that you look great?! No, really, it’s quite marked!” So, I guess I’m tolerating it well. (Of course that was before chemo #3! ) I’m not sure that I’ll continue to fall into the “tolerating it well” camp as I have already seen other symptoms popping up (nail beds are turning black and a metallic taste in my mouth).
But, enough about chemo. I have another good update. Remember that nodule that was discovered on my ovary when I went to Mayo? I had a follow-up ultrasound (here, not at Mayo) and both ovaries were totally normal. Hallelujah, thank you, Lord! We were so relieved to get that test result back. Phew!
As I’m proof-reading this post, it sounds really whiny to me. I’m not generally a whiny person, but I’m gonna go ahead and allow myself the chance to whine, just for a little bit. I have two other blog posts rolling around in my head, and both of those are fun and happy, so stay tuned for the return of positivity!
Silence May 12, 2014Posted by Judy in Musings.
Tags: breast cancer, friendship, support
Many quotes exist on silence:
Silence is golden.
So it always is: when you escape to a desert the silence shouts in your ear. (Graham Greene, The Quiet America)
If silence is good for the wise, how much better is it for the foolish! (Ivan Panin, Thoughts)
Better to remain silent and be thought a fool than to speak out and remove all doubt. (Abraham Lincoln)
I have reached the point in my journey through Cancer Land where silence on my part is the norm. Gone are the days of constant doctor’s appointments, difficult decision-making, and test after test after test. This is the point where not a whole lot is happening, just the rhythm of chemo:
- chemo infusion
- feel good for two days
- feel gross for 4-5 days
- feel pretty good but very tired for the next two weeks
- lather, rinse, repeat
During this time, there’s really not much to share. Nothing, at least, that wouldn’t simply be redundant.
So, there is silence.
This is also the point of the journey where people start fading away. All of the love and support blows away in the wind. This is not a criticism, it’s merely a commentary on human nature. It’s very easy to assume that all is well when you don’t hear anything to the contrary. It’s easy to think, “Wow! That person much be doing great! They look great, they manage to still get to work/school, etc. This must be going really well for them.” It’s easy to forget that this part of the journey is the longest, lasting four to six months. At times, it can feel like being lost in a desert, not knowing whether you’ll find an oasis or more desert over the next hill.
This is the time when the sojourners through Cancer Land need to know that this is not a solitary journey. Knowing that we haven’t been forgotten is like finding a little oasis along the way. Although I really am doing okay, it’s still a very long road, and that is exhausting.
So please, don’t let there be silence.
Silence about a thing just magnifies it. (Tennessee Williams, Cat on a Hot Tin Roof)
In the end, we will remember not the words of our enemies, but the silence of our friends. (Martin Luther King Jr.)