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.
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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.)
Ports and stuff April 30, 2014Posted by Judy in Sewing projects.
1 comment so far
Everyone should get a port. Seriously. They are awesome! Okay, maybe not everyone. Maybe just the people who have to get blood drawn often or get IV’s done often. Ports are soooo much better than IV’s! You do have to have the port inserted, but once that is done, it’s smooth sailing.
The metal roundish portion goes under the skin. The triangular looking thing with the needle poking out is used to access the port and is how medication is administered and blood is drawn.
The top is made of self-healing rubber, and it’s where the needle is inserted. The bottom portion is made of a metal (titanium or stainless steel) and it ensures that the needle doesn’t go sailing through the vein. Ports can be used for all sorts of things (delivering medicine, drawing blood, administering contrast dyes, etc.) In my case, it’s being used to deliver the chemo and to draw blood.
But back to why it’s awesome. It’s virtually pain free, at least for me it has been. There’s no fishing around with a needle trying to find a vein. There’s no pain associated with the IV insertion. No irritation or pulling on the IV insertion site. If you are going to have several things done in one day, you just access the port, and you can leave it accessed until everything is done. Accessing means the needle is inserted and the vein can now be accessed. This is what an accessed port looks like:
(The blue thing is where the syringe attaches.)
Anyway, so ports are awesome! And now on to the “stuff”. Today is chemo #2. The first chemo went really well and I didn’t feel terrible. There were maybe two days where I felt not great, but the rest were remarkably smooth. In talking with the medical oncologist today, he seemed to think this was a good sign and that I would likely do pretty well with subsequent infusions. The tiredness will continue to get worse, but he didn’t think I would suddenly get slammed with nausea. Hooray for that! He WAS surprised at how great my bloodwork looked. If you’ll recall, my hemoglobin was way low right after the second surgery. It was only 8 and as such, I had to take iron pills for a month. Well, as of yesterday, my hemoglobin is back up to 11, which is apparently a huge improvement. So huge, in fact, that the doctor wondered if I’d gotten a blood transfusion! Hooray body for boosting that number back up. Go team!
The one bit of news that was weird and disconcerting was regarding weight gain. I’d already read that breast cancer patients tended to gain weight on chemo, and had already started to see some of that. I wasn’t sure if the weight gain was still part of the “I’m no longer breast-feeding and haven’t figured out how to modify my food intake so I’ve managed to gain 10 pounds in 2 months” regime. Now I know that it’s chemo-related and can quit stressing about eating less food. But here’s the weird thing. The weight gain has something to do with breast cancer and not with the drugs. You can give the exact same chemo drugs to a lung cancer patient, and they will lose weight and look emaciated, while a breast cancer patient will gain weight. Isn’t that totally weird?
Wanna know what else is weird? It’s totally possible for spouses to get sympathetic chemo side effects. Hubs has had a weird, metallic taste in his mouth, which is a common side effect. I’ve not had that one, but apparently, he’s having it for me. Poor guy. At least he didn’t get hit with nausea!
So there you have it, a little lesson on ports and a wee update on chemo.
Weird April 25, 2014Posted by Judy in Musings.
Tags: breast cancer
1 comment so far
I wouldn’t say that this is an onomatopoetic word, but it certainly embodies the essence of the word. Just say it slowly a few times.
See, you know the meaning of the word just by saying it. The shape that your mouth takes on and the resulting combination of sounds is, well, weird. (Poignant is another word like that.)
My life is weird.
It’s weird that I no longer have breasts. I don’t really think about it, but when I do, it’s weird.
It’s weird that I have these crazy long scars and wrinkly-looking skin.
It’s weird that I can make said wrinkly-looking skin dance by flexing my pecs.
It’s weird that it feel like I’ve been flat-chested for a very, long time.
It’s weird that I can see my heart beating when I look at my chest.
It’s weird that when I put my hand over my heart, I can feel it’s entirety beating rather than just the little corner left unobscured by breasts.
It’s weird that I might lose my hair, and my fingernails.
It’s weird that in the land of healthcare providers, the women are the only ones that ask, “How was your cancer discovered.”
It’s weird that despite the flurry of activity and gazillion appointments, I’m still at the beginning of this “cancer business”. There’s still a long road ahead.
It’s weird that people I know only in a very casual manner ask me about “my situation”. It’s akin to being pregnant, that time in your life when everyone asks you personal questions and thinks it’s okay to rub your belly. Weird.
It’s weird that I have a life-threatening disease. I don’t FEEL sick. I’d like to think I don’t LOOK sick. But the fact of the matter is that I AM sick, and I might die. And that brings me to the weirdest of the weirds:
It’s weird that I could die sooner rather than later. Everyone is going to die, at some point in time, we just don’t think about it. The fact that it has been brought to the forefront of my mind is just. plain. weird.
My life right now is weird. Poignantly weird.
The Cocktail Bar April 16, 2014Posted by Judy in Musings.
Tags: breast cancer, chemotherapy, drugs, nausea, side effects
A middle-aged woman and her companion walk up to the building, the bright neon sign flashing “Cocktail Bar”. She feels a little out of her comfort zone. The last time she set foot in a bar was when she was in grad school, 10 years in the past. She timidly places her hand on the door handle, takes a deep breath, and walks in. The bar is surprisingly full, people crowded around tables, some with food, others with drinks, and still others wrapped up in blankets. The one common denominator, the far away look in all of their eyes.
The young woman walks up to the bar tender and says, “Uh, I guess I need a cocktail. I’m not sure which cocktail would be the best for me, though.”
”Well, tell me a bit about yourself and I can find the best one for you.”
“I, uh, I have breast cancer, of the pleomorphic lobular version, despite nursing four children for over 12 months each. The cancer has spread to at least 2 lymph nodes. I think my Oncotype score was about 18, but I don’t really remember. Um, I’ve had a bilateral mastectomy but did not have further lymph node dissection, opting instead to have radiation to the axillary region. I guess that about sums it up.”
“In that case, I think you should have the ACT cocktail. You’ll get four cycles of AC, Adryamycin and Cytoxan, with each cycle being delivered every two weeks. After that, you’ll get twelve weekly cycles of T, Taxol. Why don’t you step on over here and I’ll have you talk with my assistant bar tender to get you all of the details.”
As the young woman is following the bar tender, another person rushes into the bar frantically waving a piece of paper shouting, “Wait! Wait! Don’t start anything yet! I have new information!”
He hands the slip of paper to the bar tender, who reads it and then wrinkles up his nose. “Hmmm, this changes things. Ma’am, were you aware that you have an issue with your heart?”
The woman nods.
“Your left ventricle is not squeezing quite hard enough. Now it’s possible that the issue could be an artifact from pregnancy, but I’d rather not take any chances. Adryamycin and Taxol both are what we call cardiotoxic drugs. Since you are already starting with a slightly decreased heart capacity, I’m going to give you a different cocktail that will not put you at risk for further heart damage. This will be called CT: cytoxan and taxotere. You’ll get this every three weeks for four cycles. If you are tolerating it well, then we’ll push on to 6 cycles so that we can treat the disease as aggressively as possible.”
“Okay, that sounds reasonable. So do I still need to meet with the assistant bar tender to get more specifics?”
“Yes. She will be going over the side-effects of the cocktail and give you some tips on how to manage it all. Do you have any other questions?”
”No, not right now, thanks.”
“Alright, then. I just want to add that you will be losing your hair. Probably around week 3, you’ll feel your scalp getting tight and then your hair will start falling out. It will grow back after the treatment is ended, but you’ll definitely be losing your hair.”
“Okay, I’m prepared for that, thank you.”
The young woman meets with the assistant bar tender in a private room, where she is informed of all of the various side effects of the cocktail and is given a handy chart to help her keep it all straight in her mind.
|Alopecia (hair loss)||Wear a wig or a scarf|
|Fatigue||Take frequent naps, but don’t be a couch potato|
|Nail discoloration and changes|
|Appetite changes||Eat 5-6 small meals a day, don’t use hunger as a cue for when to eat|
|Nausea||Take the medication and stay ahead of the nausea|
|Constipation||Call the office as soon as you notice changes. Don’t wait until you’ve gone 5 days without a bowel movement.
Drink lots of fluids. Add greens to your diet as well as prunes, flax seed and apple juice.
|Metallic taste||Use plastic silverware|
|Dehydration||Drink at least 64 ounces of water per day. Stay hydrated!|
|Decreased white blood cells||Neulasta injection. Stay away from large crowds, wear a mask if you will be around sick people.|
“The day after your cocktail, you’ll need to come in to get a Neulasta injection. This will create more bone marrow, which is where the white blood cells are housed. The injection itself isn’t too painful, but you will likely experience bone pain as a result of the new bone marrow being created.”
“Great! One more thing to have to deal with!”
“I know. I’m sorry!” The assistant bar tender places her hand on the young woman’s hand and gives it a squeeze. “You can take Claritin and Tylenol to help mitigate the bone pain.”
“So basically, I’m going to become a druggie. I’ll be alternating Compazine and Zofran every four hours for the nausea. For two days after the cocktail, I’ll be taking Decadron, also for nausea. For constipation, I’ll be taking Miralax and Senecot. For bone pain I’ll be taking Claritin and Tylenol. And this is in addition to the iron pills I have to take post-surgery. How in the world do I keep this all straight?” The young woman’s brain was starting to swim with all of the information that was being given her.
“I would recommend keeping a log of when you have taken each drug and what time you are supposed to take each drug. The most important ones are going to be the anti-nausea medications. You really want to stay ahead of the nausea. Once you get very nauseated, it’s very hard to manage, and then you run the risk of dehydration and malnourishment. So you really, really want to stay on top of the nausea.”
The young woman lets out a huge sigh. “Okay, I’ll see what I can do about that. Anything else I need to know?”
“Nothing comes to mind. Let’s go find the bar tender and make sure we haven’t missed anything.”
The two women go in search of the bar tender, who is just finishing up with another patron.
“So if I understand correctly, you are wanting to get started today?”, he says.
“Uh, well, um, ah, er, I guess.” The young woman looks at her companion, who had been quietly following her around and had been taking mental notes of all of the information. His eyes were as big as saucers at the thought of beginning immediately, but he shrugs his shoulders and says, “Sure, go for it.”
And so she does.
They find her a private room for her first infusion. The bed is horribly uncomfortable, so the young woman opts to sit in the chairs. The nurse comes in and accesses her port, which is a sterile process. She puts gloves on, making sure to only touch the port accessing items once the gloves were on. The port site is cleaned with some anticeptic for 30 seconds and then the access needle is inserted. The young woman is overjoyed to discover that this is a practically pain free process. No fishing around to try and get an IV started!
Ah, finally! she thinks, Something positive in my day!
The nurse then hooks her up with a liter of saline fluid to make sure the young woman is well hydrated. After that, the first drug is set up to run for an hour. The young woman is given specific instructions to call the nurse if anything feels different. (Itchy, tired, sudden nausea, etc.) The first drug is administered without any problems and the second drug is set for an hour along with a half liter of saline fluid.
Four hours after getting started, the young woman is finished and gets ready to head home. It has been a busy day for her and she is tired, but happy that she is feeling so good. So far, the cocktail hasn’t produced any of the dreaded side effects. She knows this likely won’t last, but for now, she’ll take the good feeling.
Tomorrow will be another day.
With that, the young woman and her companion step out of the cocktail bar into the beautiful, sunny day.
The haircut April 11, 2014Posted by Judy in Musings.
Tags: baldness, breast cancer, haircuts
From the moment I knew that I would need chemo, I made the decision to cut my hair off at the beginning of treatment, long before the chemo had a chance to make me bald. I figured I would donate the hair to my favorite agency: Children With Hairloss. (And no, the irony of that is not lost on me!)
I ended up with a somewhat disastrous look,
When I walked into the salon, I felt totally out of place. I was easily half the age of all of the patrons and I thought, “Hmmm . . .I’m not sure they’ll know how to deal with my hair.” But, I kept an open mind. An older gentleman came over and asked if I was there for an “evening out” cut, and I said, “Yes.”
As we are walking back to the chair, he comments: So you are donating your hair?
For some reason, I stumbled and hemmed and hawed in the explanation and finally blurted out: Well, it’s all going to fall out anyway.
Barber: Wait? It’s all going to fall out?
Me: Yeah. I’m going through chemo therapy.
Barber: Oh, I am so sorry. I have been there myself.
And then he proceeded to share his story and offer encouragement and we spent the rest of the haircut talking cancer-stuff. He was polite enough to make sure I was cool with talking about it. Of course I said yes, since I’m a cancer story junkie these days! During the course of our conversation, he said that there would be no charge for the haircut. “You have enough to worry about. No need to add extra.” Such a lovely gesture! He also said that if I ever decide that I want to just shave it all off instead of waiting for it to fall out, he’d be happy to do that as well. He even went so far as to offer a private room so that the world wouldn’t have to watch me lose all my hair. Although that could be construed to be creepy, I thought it was another lovely gesture!
After the cut was finished, he walked me to the door, wished me luck and gave me a big hug. I walked out of there feeling 10 feet tall with the biggest smile on my face! That is not at all the experience I expected to have, but I’m so glad I went to that salon as it improved my already really great day!
So having really short hair is new for me. Heretofore, the the shortest cut I’d ever had was a chin length cut. This is soo very different. Not sure if I like it, but in the end, I think this is going to be a better place from which to go bald.