Wow... I can't believe it's been over two weeks since I last posted. I guess I have just been that busy and not that preoccupied with cancer-related stuff.... Good. Also, my computer decided to bite the dust a couple weeks ago, so posting requires using my iPhone or borrowing my husband's computer, both of which require a tiny bit more effort...
Anyway, it has really been bothering me lately is how "back to normal" things are. As I was going through treatment, I kept making myself promises... like... Once I'm done with treatment I'll make a point to exercise more. or... Once I'm done with treatment I'll start planning healthier menus and eat better. or... Once I'm done with treatment I'll make a point to leave work at a decent time and spend more time with my husband. or... Once I'm done with treatment I'll become an advocate for cancer awareness. or... Once I'm done with treatment I'll stay active on the cancer forums and help out others going through tough times. etc. etc. etc.
I am just failing miserably at every single one of my promises to myself.
I have gotten back into the same rut I was in before the cancer came back. I'm working over 40 hour weeks and coming home later and later (although not nearly as late as before). I don't stay on top of my narcolepsy meds (or maybe that's just my excuse), so I tend to get tired easily at nights and on weekends. When I do get home from work, instead of exercising or being active, I do a minimal amount of chores and then just lay around the house the rest of the night. On the weekends I lay around a lot too. Again, I could be exercising, whether that would entail using the elliptical machine, or just being active and leaving the house. I could be making more effort to spend time participating in my husbands hobbies, like his RC helicopter/airplanes. You would think getting cancer would be a great motivator to start being active, but apparently it wasn't for me.
In the same vein, I'm upset with my eating choices. I continue to make unhealthful meals, just because I know my husband will like them (or at least that's my excuse). Half of our meals during the week consist of quesadillas, pizza, hot dogs, fried food, etc. For someone who enjoys cooking as much as I do, you would expect I would find the time to make better meals. I really WANT to... but by the time I get ready to go grocery shopping on the weekends, I rush to put together a menu and fall back to the easy, unhealthful meals. I also know that I've been tending to come home later, so I want to make sure whatever I decide to make won't take a lot of time. Excuses, excuses...
I'm also upset at my lack of advocacy. I tend to keep quiet about my disease, other than to give updates with how I'm feeling to the people who ask. Did you guys know April is Oral Cancer Awareness month? There are other folks I've befriended on facebook and various forums and they're hosting free screenings at their dentists or getting articles featured about them in their local newspaper or even putting together awareness walks. What am I doing? Nothing. I haven't even blogged in two weeks to be an advocate to the folks that are already listening. I've stopped checking up on the oral cancer forums and I feel bad that I haven't been on there to offer advice to people going through treatment now. During treatment, I joined the i2y (I'm too young for this) cancer foundation - Arizona branch group on facebook. The plan was to try to be active with that group and to possibly go to some of the meet-ups, even if they were in Phoenix.... but I haven't even looked at their facebook page in weeks. I've also been a hypocrite when it comes to cancer prevention. I get so angry when I see people smoking, yet I never bother to use that as an opportunity to talk to them about how much cancer sucks and that they should stop. I get angry when I hear about people using tanning beds, yet again, I never say anything. Additionally, I KNOW I should be a big proponent on using sunscreen, yet the other weekend I decided to go pull weeds in my front yard, and I didn't even bother to put sunscreen on my back. I got a pretty bad sunburn there and was just super embarrassed when I had to see my MO a few days later. You would think of all people I would know better.
I don't know what it's going to take for me to make these changes in my life. I really want to be a better person. I want to live a healthy lifestyle and I want to be an advocate for my disease, but for some reason I just can't get motivated. You would think going through all this cancer crap would have been a life-changing experience. I suppose I need to focus on making these changes one at a time. Maybe I was just overwhelmed with trying to fulfill all my promises at once. Hopefully over time I can become the healthy oral cancer-advocate that I aspire to be.
Sunday, April 18, 2010
Friday, April 2, 2010
"I'm going home and I'm gonna, I'm gonna bite my pillow..."
Ok, weird title I know... But for any of you who get the reference, you're awesome.
Let me explain. It's a quote from the 1996 Christopher Guest classic, "Waiting for Guffman". Today I went to a follow up swallow study and the speech and swallow therapist bore an uncanny resemblance to Corky St. Clair, Guest's character in the film who has that quote. I kept waiting for the therapist to start spewing lines from the movie.
Anyway, humor aside, my swallow study went well. I have no issues with properly blocking my lungs or my nasal passages when swallowing. The base of my tongue (half controlled by the nerve/muscle I had removed) does not quite raise as much as it should, which is why I have such difficulty eating still. When I swallow, I leave residue behind. It takes me 2-3 swallows for a normal person's 1. It also means I can't quite reach the food that gets stuck to the roof of my mouth. The therapist gave me some suggestions for exercises to do to strengthen the remaining tongue muscles.
Even so, I was quite bothered by the therapist's and radiologist's attitudes. When I complained about how long it took me to eat or how I hated the way my speech had become, their response was that it was normal for someone having undergone my treatment and I should be thankful for being in as good of shape as I was. I replied that it wasn't normal for your average 25-year-old. Their response was that I wasn't a "normal" 25-year-old. *sigh*. That shouldn't matter.
Well it's getting close to bed time. I have to get up early tomorrow for some more doctor check-ups. Good night.
Let me explain. It's a quote from the 1996 Christopher Guest classic, "Waiting for Guffman". Today I went to a follow up swallow study and the speech and swallow therapist bore an uncanny resemblance to Corky St. Clair, Guest's character in the film who has that quote. I kept waiting for the therapist to start spewing lines from the movie.
Anyway, humor aside, my swallow study went well. I have no issues with properly blocking my lungs or my nasal passages when swallowing. The base of my tongue (half controlled by the nerve/muscle I had removed) does not quite raise as much as it should, which is why I have such difficulty eating still. When I swallow, I leave residue behind. It takes me 2-3 swallows for a normal person's 1. It also means I can't quite reach the food that gets stuck to the roof of my mouth. The therapist gave me some suggestions for exercises to do to strengthen the remaining tongue muscles.
Even so, I was quite bothered by the therapist's and radiologist's attitudes. When I complained about how long it took me to eat or how I hated the way my speech had become, their response was that it was normal for someone having undergone my treatment and I should be thankful for being in as good of shape as I was. I replied that it wasn't normal for your average 25-year-old. Their response was that I wasn't a "normal" 25-year-old. *sigh*. That shouldn't matter.
Well it's getting close to bed time. I have to get up early tomorrow for some more doctor check-ups. Good night.
Wednesday, March 31, 2010
Insidious Tastebuds
I am finding that I don't notice the fact that I can't taste things quite as often. At first I thought it may be that I'm getting used to the lack of this sense. Then I began to realize that I could distinguish little nuances in foods. I wouldn't say that I CAN taste things, but I wouldn't say that I CAN'T anymore. It is such a gradual, insidious development. I guess I expected zaps of flavor... like one day tasting a certain spice or flavor and the next day tasting another. It's not really like that at all. Food just sorta becomes less and less bland. I feel like one day I'll just start commenting on how bad or how good something tastes and I won't even realize it.
The one thing that I still can't really taste is 'sweet'. Breakfast pastries just taste like bread. Ice cream is like really cold milk. Candy is pretty much just flavorless.
Regardless, I'm just happy to have realized my tastebuds may be coming back. I missed them greatly.
The one thing that I still can't really taste is 'sweet'. Breakfast pastries just taste like bread. Ice cream is like really cold milk. Candy is pretty much just flavorless.
Regardless, I'm just happy to have realized my tastebuds may be coming back. I missed them greatly.
Monday, March 29, 2010
Douglas Adams was on to something
"A towel, it says, is about the most massively useful thing an interstellar hitchhiker can have. "
Replace towel with scarf (which really is just a thin towel) and I couldn't agree more. Since wearing my array of scarves whenever I leave the house, I have begun to realize its multiple applications, especially when I travel.
Already this morning I have utilized my scarf as follows:
Use 1 - style, warmth, and protection to my sun-sensitive neck.
Use 2 - napkin
Use 3 - bag
Use 4 - blanket
Use 5 - hankerchief
Use 6 - iPhone screen cleaner
Use 7 - "gloves" (hand protection from hot or cold)
Use 8 - blog topic :)
Well, my flight back to Tucson should be boarding shortly. I had a great time visiting my family, but it'll be nice to be home.
Replace towel with scarf (which really is just a thin towel) and I couldn't agree more. Since wearing my array of scarves whenever I leave the house, I have begun to realize its multiple applications, especially when I travel.
Already this morning I have utilized my scarf as follows:
Use 1 - style, warmth, and protection to my sun-sensitive neck.
Use 2 - napkin
Use 3 - bag
Use 4 - blanket
Use 5 - hankerchief
Use 6 - iPhone screen cleaner
Use 7 - "gloves" (hand protection from hot or cold)
Use 8 - blog topic :)
Well, my flight back to Tucson should be boarding shortly. I had a great time visiting my family, but it'll be nice to be home.
Thursday, March 25, 2010
A bum bum
So right now my left leg / butt is kinda sore / bruised. To explain why let me start at the begining...
Tuesday morning at 2am, I woke up, ran to the bathroom, and started puking. Why? I don't know. I took my temperature. It was 97ish, so normal for me. I was slightly clammy, but feeling better so I went back to sleep. About an hour later I woke up again and repeated this process. This continued until about 9:00am. Needless to say, I had to take a sick day from work. :/ Was it food poisoning? Jake ate the same stuff that I did, so probably not. Maybe it was just a stomach bug. I had a couple sips of water throughout the morning, but nothing like what I normally do. Around 2:00pm I finally tried to eat stuff. For the rest of the day I had a smoothie and maybe 1/4th a can of soup.
Well, I guess that wasn't enough fluid intake with all the puking I was doing, because when I woke up yesterday morning I was quite dehydrated and I ended up fainting a few times... first in the shower, then getting out of the shower, then trying to brush my teeth. By the third fall I had woken up Jake. I guess I gave him a good scare. He said my eyes were wide open, just staring blankly. I didn't know that happens when you faint. Weird.
Anyway, this is why I'm sore today. I must have fallen on my backside. I guess I should be glad it wasn't my head!
I'm actually in the airport now, getting ready to go visit my sister, my belated birthday gift to her. This should be a fun weekend! I just hope sitting on the plane isn't going to make my bum bum any more uncomfortable.
Tuesday morning at 2am, I woke up, ran to the bathroom, and started puking. Why? I don't know. I took my temperature. It was 97ish, so normal for me. I was slightly clammy, but feeling better so I went back to sleep. About an hour later I woke up again and repeated this process. This continued until about 9:00am. Needless to say, I had to take a sick day from work. :/ Was it food poisoning? Jake ate the same stuff that I did, so probably not. Maybe it was just a stomach bug. I had a couple sips of water throughout the morning, but nothing like what I normally do. Around 2:00pm I finally tried to eat stuff. For the rest of the day I had a smoothie and maybe 1/4th a can of soup.
Well, I guess that wasn't enough fluid intake with all the puking I was doing, because when I woke up yesterday morning I was quite dehydrated and I ended up fainting a few times... first in the shower, then getting out of the shower, then trying to brush my teeth. By the third fall I had woken up Jake. I guess I gave him a good scare. He said my eyes were wide open, just staring blankly. I didn't know that happens when you faint. Weird.
Anyway, this is why I'm sore today. I must have fallen on my backside. I guess I should be glad it wasn't my head!
I'm actually in the airport now, getting ready to go visit my sister, my belated birthday gift to her. This should be a fun weekend! I just hope sitting on the plane isn't going to make my bum bum any more uncomfortable.
Monday, March 22, 2010
No more chemo!
I got a voicemail from my MO's office this morning. "Hi. This is David from Dr. Kratz's office. This message is for Jennifer. Dr. Kratz just finished speaking with another physician and there will be no more chemo, but she wants to be sure to see you right after your next PET/CT."
Horay! I mean maybe it's not super exciting. On the one hand this means further treatment didn't seem beneficial and I still may worry that I didn't do everything I could.... On the other hand, I can finally start trying to get back to normal and I don't have to worry about going though all those nasty side effects again or losing my hair. I am very happy about that. :)
I had a check-up with my RO last Friday. He seemed to think I was doing remarkably well. He told me he's been working on writing a paper about me. I'm one of 18 subjects for who he modeled radiation plans to spare a major salivary gland. The gland in my right cheek got about 1/10 the dose of radiation given by your average cancer center. With the special tomotherapy machine that they used, they were able to really pinpoint the radiation to hit certain places and avoid others. That is why even though I have to drink more water than your average person (especially with meals), my mouth doesn't particularly feel dry all the time. Other patients I've spoken with can't go more than 10-15 minutes without water. I can go an hour or two before it really starts to bother me. Let's hope my RO's paper can continue to improve the quality of life for future oral cancer patients.
I still have many doctor appointments and health issues. I have to schedule a swallow test and a hearing test to compare to the baselines I had. I have to have bloodwork done monthly for a while. I have to schedule a check-up with my ENT. I see my MO for a checkup in about 3 weeks. I'll see my RO in about 3 months. I'll have a PET/CT in May. I'm not 100% normal yet by any means. My saliva isn't up to normal levels. I still can't taste most things. My speech is labored and somewhat difficult to understand. I have to watch out for signs of hypothyroidism as I will almost definitely develop this at some point because of the chemo. I am still fatigued a lot of the time. The insides of my mouth are extremely sensitive and eating almost anything causes blisters on the insides of the cheeks and lips. The bumps go away within 12 hours and they don't hurt, but it's still annoying.
Like I said, though.... now that I know I don't need more chemo now, at least I can start trying to get back to normal. I think tomorrow I will call the medical supply company and finally return that suction machine. :)
Horay! I mean maybe it's not super exciting. On the one hand this means further treatment didn't seem beneficial and I still may worry that I didn't do everything I could.... On the other hand, I can finally start trying to get back to normal and I don't have to worry about going though all those nasty side effects again or losing my hair. I am very happy about that. :)
I had a check-up with my RO last Friday. He seemed to think I was doing remarkably well. He told me he's been working on writing a paper about me. I'm one of 18 subjects for who he modeled radiation plans to spare a major salivary gland. The gland in my right cheek got about 1/10 the dose of radiation given by your average cancer center. With the special tomotherapy machine that they used, they were able to really pinpoint the radiation to hit certain places and avoid others. That is why even though I have to drink more water than your average person (especially with meals), my mouth doesn't particularly feel dry all the time. Other patients I've spoken with can't go more than 10-15 minutes without water. I can go an hour or two before it really starts to bother me. Let's hope my RO's paper can continue to improve the quality of life for future oral cancer patients.
I still have many doctor appointments and health issues. I have to schedule a swallow test and a hearing test to compare to the baselines I had. I have to have bloodwork done monthly for a while. I have to schedule a check-up with my ENT. I see my MO for a checkup in about 3 weeks. I'll see my RO in about 3 months. I'll have a PET/CT in May. I'm not 100% normal yet by any means. My saliva isn't up to normal levels. I still can't taste most things. My speech is labored and somewhat difficult to understand. I have to watch out for signs of hypothyroidism as I will almost definitely develop this at some point because of the chemo. I am still fatigued a lot of the time. The insides of my mouth are extremely sensitive and eating almost anything causes blisters on the insides of the cheeks and lips. The bumps go away within 12 hours and they don't hurt, but it's still annoying.
Like I said, though.... now that I know I don't need more chemo now, at least I can start trying to get back to normal. I think tomorrow I will call the medical supply company and finally return that suction machine. :)
Wednesday, March 17, 2010
My 100th blog post
I can't believe I'm up to 100 blog posts already! It seems like just yesterday I started all of this.
I don't have much to talk about today, other than the fact that my MO's office called. They left a message saying they want me to call them back regarding the question we spoke about yesterday. I assumed it was serious and apprehensively called them back. It turns out they just wanted to let me know that my MO called that other doctor's office, only to find out he's out of town until Monday. They just wanted me to know I shouldn't expect a call from them until early next week. If that's all it was, why not leave that in the voicemail.... oh well. The longer they put off giving me an opinion, the more I question how much I really need it. They don't seem very concerned about its urgency regardless.
I don't have much to talk about today, other than the fact that my MO's office called. They left a message saying they want me to call them back regarding the question we spoke about yesterday. I assumed it was serious and apprehensively called them back. It turns out they just wanted to let me know that my MO called that other doctor's office, only to find out he's out of town until Monday. They just wanted me to know I shouldn't expect a call from them until early next week. If that's all it was, why not leave that in the voicemail.... oh well. The longer they put off giving me an opinion, the more I question how much I really need it. They don't seem very concerned about its urgency regardless.
Subscribe to:
Posts (Atom)
