I'll
admit - I've tried to convince myself that Xeloda isn't chemo. I've used
all sorts of terminology to convince myself that maintenance is easier than IV
chemo, that it's less harmful, that it's no worse than taking a vitamin or
supplement.
*sigh*
As I finish up with this third round of Xeloda (today is the last day of this round of pills), I'm starting to see some of the side effects kick in. Luckily, it's nothing like when I was on IV chemo. However, I think I had talked myself into believing that I wouldn't have any side effects from this. Realizing that I was lying to myself makes me feel dumb.
The nausea has been minimal - once I figured out that I needed to eat a decent amount of food prior to taking the pills (and making sure that I took the Ginger supplement), I was able to keep the nausea down. It kicks up every once in a while, but I've got that part of it figured out for now. I've been diligent about the hand/foot symptoms, and making sure that I'm constantly vigilant about hand washing and moisturizing. And, I will say, on a very vain note, keeping my feet moisturized and covered at night has cut down on the dry skin on my feet. A nice side effect in the winter, if I do say so myself. :)
So, what are some of these new issues I'm dealing with? Well, there's a couple. As I said in my post yesterday, I'm much more susceptible to getting colds, etc. I've been very against getting the flu shot, but I'm going to ask my doctor about it tomorrow when I go in. Given the fact that I'm not able to fight things off as well, I'm thinking it might be worth looking into.
In and of itself, this is hard. I am being forced to rethink many of my decision regarding my health (specifically around my expectations of my body, my ability to fight off colds, viruses, etc.) and will have to really change the way I approach social situations. I can't just take for granted that my body is going to be able to fight off every cold, virus, and infection that my kids bring home.
Damn it. Now I have to plan better. Say no to events if/when I'm not feeling 100%. Make sure I don't forget that I'm not Super Woman. *grrr*
Okay - so, while I'm reeling from that realization (which I clearly don't care for), let's also talk about some of the other fun things that are popping up. Trouble sleeping - I'm still on the Ambien to help me sleep/get to sleep at night, but I tried to cut back on the dosage by cutting the pills in half. I was waking up fairly dopey (moreso than normal...), and had hoped that this would help. Instead, I'm waking up at least once each night (usually around 2pm...), and sometimes, I'm up several times. I'll be talking with the doctor tomorrow about this, too.
Hair loss - based on the itchiness in my scalp, I'm thinking that my new-found funky hairdo is going to be short-lived. Xeloda is an oral form of 5-FU, and one of the side effects can be thinning hair. I lost about 1/2-2/3 of my hair when I was on Folfox back in 2008, and looking back on pictures from earlier this year, I definitely had thinning of the hair, in spite of the shaved head. It makes sense that I would have some hair thinning with this new chemo. Which, when I think about it, kind of sucks. But, I'll survive.
*sigh*
As I finish up with this third round of Xeloda (today is the last day of this round of pills), I'm starting to see some of the side effects kick in. Luckily, it's nothing like when I was on IV chemo. However, I think I had talked myself into believing that I wouldn't have any side effects from this. Realizing that I was lying to myself makes me feel dumb.
The nausea has been minimal - once I figured out that I needed to eat a decent amount of food prior to taking the pills (and making sure that I took the Ginger supplement), I was able to keep the nausea down. It kicks up every once in a while, but I've got that part of it figured out for now. I've been diligent about the hand/foot symptoms, and making sure that I'm constantly vigilant about hand washing and moisturizing. And, I will say, on a very vain note, keeping my feet moisturized and covered at night has cut down on the dry skin on my feet. A nice side effect in the winter, if I do say so myself. :)
So, what are some of these new issues I'm dealing with? Well, there's a couple. As I said in my post yesterday, I'm much more susceptible to getting colds, etc. I've been very against getting the flu shot, but I'm going to ask my doctor about it tomorrow when I go in. Given the fact that I'm not able to fight things off as well, I'm thinking it might be worth looking into.
In and of itself, this is hard. I am being forced to rethink many of my decision regarding my health (specifically around my expectations of my body, my ability to fight off colds, viruses, etc.) and will have to really change the way I approach social situations. I can't just take for granted that my body is going to be able to fight off every cold, virus, and infection that my kids bring home.
Damn it. Now I have to plan better. Say no to events if/when I'm not feeling 100%. Make sure I don't forget that I'm not Super Woman. *grrr*
Okay - so, while I'm reeling from that realization (which I clearly don't care for), let's also talk about some of the other fun things that are popping up. Trouble sleeping - I'm still on the Ambien to help me sleep/get to sleep at night, but I tried to cut back on the dosage by cutting the pills in half. I was waking up fairly dopey (moreso than normal...), and had hoped that this would help. Instead, I'm waking up at least once each night (usually around 2pm...), and sometimes, I'm up several times. I'll be talking with the doctor tomorrow about this, too.
Hair loss - based on the itchiness in my scalp, I'm thinking that my new-found funky hairdo is going to be short-lived. Xeloda is an oral form of 5-FU, and one of the side effects can be thinning hair. I lost about 1/2-2/3 of my hair when I was on Folfox back in 2008, and looking back on pictures from earlier this year, I definitely had thinning of the hair, in spite of the shaved head. It makes sense that I would have some hair thinning with this new chemo. Which, when I think about it, kind of sucks. But, I'll survive.
Hello,
funkiness....
We'll see how this goes. It's definitely thicker than it was the last time I shaved it, and I have had to get a hair cut (about two weeks ago) to keep the shagginess down to a minimum. I've had to learn how to style it again, how to schedule said styling (all 5 minutes of it) into my morning routine....and, it's been kind of fun. I've been toying with the idea of dying my hair again, and how can I style it once it grows out a bit more, etc. I'm going to hold off on those ideas for now. We'll see how this goes. Meantime, I'm digging the short style. We'll see how long it lasts.
Appetite - my desire for food comes and goes. My tastes change, almost daily. I have a new aversion to tomato-based sauces, which is odd. I can't eat the marinara sauce I make for my family, and any tomato-based soups have an almost metallic taste to them. I'm not happy about this. And, my overall desire for food isn't there.
Part of this is due to the fact that I have another new side effect - GI issues. I'll spare you the details; suffice it to say that right now, fresh fruits and veggies don't exactly agree with me, and each day, I'm struggling to find foods that won't upset my tummy. This sucks, because I really want nothing more than to keep eating my salads, fruits, veggies with hummus, etc. But, alas, they all cause issues that don't need to be discussed on a blog that my co-workers are reading. :)
Yesterday, I finally remembered that I had a protein shake mix in the pantry, and made myself a chocolate peanut butter protein shake. That worked well, so I may do that again today. Hey - it's not perfect, but it helps, and right now, that makes me happy.
I'm dealing with a lot of emotional instability right now (read: mood swings), and I'm not sure if that's from the chemo, or from the fact that I'm trying to balance everything. I am going to see a therapist at CTCA today; I think working with someone will help me sort through the mess that's in my head, and help me deal better with, well, everything. I have a lot on my mind, and sometimes, it's completely, utterly, depressingly overwhelming. Don't get me wrong - I'm optimistic and glad to be alive; it's just that some days, what's weighing on me seems too much for one person to bear. So, I'm seeking out someone who can help me get through it. I hope.
I think the biggest thing that I'm struggling with right now is that I so badly want to get back to living life normally, and I can't. I am still very much dealing with the emotional baggage that this diagnosis has brought, along with the fact that I'm trying to balance work, home life, and cancer. It's not easy. It's actually one of the hardest things I've ever had to do. When I went through this last time and I finished chemo, I was done. Yes, I had routine check-ups, but they were every 3 months or so. This time, I have to remember my Xeloda, all the meds that go along with that, 6 week check-ups, what week of this round am I on....it's a lot. The thing with this is that, as much as I want it all to be over, it isn't. I don't know that it ever will be. My cancer is going to be a part of my life for the rest of my life. I need to remember that, and embrace it.
I read and shared something on facebook yesterday that spoke to me. It said: "Cancer does not define me, but how I live and fight with cancer DOES define me."
Holy hell - talk about speaking the truth. My cancer does not define me. It is but a part of who I am. Yes, it's indelibly changed the person I am, in side and out, physically and emotionally. It's made me realize what I am capable of, who I want to be, and who I want to be remembered as. It has torn me down in ways that I could never have imagined. It has made me weaker than I've ever thought a person could be. However, it has shown me that I am a LOT stronger than I realized. It has forced me to look at the world differently. It has given me an appreciation for life in general, and for all of the beauty that it holds. Cancer has shown me death, life, illness, health, fear, hope, faith, love, untouchable heartbreak, and amazingly uplifting miracles. I have seen it tear families apart, and I have seen it create new families.
A person does not need to be defined by their cancer. Rather, we need to look at the whole person, and how their diagnosis not only affects them physically, but emotionally as well. I'm not sure how we do this, but it needs to happen. There are many organizations out there that look at some of these pieces, but I don't think I've found a single organization yet that has wholly and completely considered that the emotional component of a diagnosis like this is just as vital as the physical piece. I think there are several that are heading that way, which makes me feel like we are on the right path. I'm excited to see where the next several years takes this, and how I can be a part of this movement.
I just realized that I'm totally off-topic from the title of this blog posting, so I'll end here.
Comments:
Natteringnic said...
Fab
post...as always. I love your writing and your ability to convey emotion.
Ottawa has a new addition to the cancer fight - the Maplesoft Centre. Its mandate is to pretty much take care of everything a cancer survivor, and their family, need beyond the medicine. If you're looking for a template to share with "the poweres that be" in your area, it might be worth sharing. https://survivorship.ottawacancer.ca/main.jsf
Ottawa has a new addition to the cancer fight - the Maplesoft Centre. Its mandate is to pretty much take care of everything a cancer survivor, and their family, need beyond the medicine. If you're looking for a template to share with "the poweres that be" in your area, it might be worth sharing. https://survivorship.ottawacancer.ca/main.jsf
November
29, 2012 at 9:44 AM
I
agree and understand everything you said! I remember being told not to eat any
fresh fruits and veggies while on chemo as it most likely would give me
dia-hoo-hoo. I do remember my feet and hands turning bright red, burning and
peeling. Xeloda was awful for me but I was on that clinical trial. Your hair
looks really cute!
November
29, 2012 at 2:53 PM
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