Almost 5 weeks out

Laralyn

I'm about to hit the five week milestone after finishing chemo and rads. I think everything is going well and I'm just an impatient person who wants to be back to normal already. :-)

I have an appointment with a speech pathologist on 7/13 and I'm trying to both wait it out without going crazy, and to not think about Friday the 13th being bad luck! Until that appointment, my doctor is strict about NOTHING by mouth except small sips of water. I had no idea that a "nothing by mouth" decree would bother me so much. I feel silly that it kind of demoralizes me, and I guess I didn't realize how many of our social activities involved some sort of eating! I think I'm swallowing water a little more easily now, which means either I've gotten better at the chin-tuck swallow, or the problem is stemming from swelling that is starting to go down. It makes sense, since part of the cancer was on my soft palette.

As of today, I'm completely off the pain patch. The pain is definitely worse than when I was on it, but bearable with some Aleve. I may have to take some Norco to sleep tonight. The crazy thing is that my doctor said that even taking one Norco every six hours is less narcotics in my system than the 25 mcg (smallest normal) patch! That's some powerful stuff!

I asked a week ago about returning to work in a couple weeks (which would have been next week), and my doctor said that ideally he would keep me home for another month. I'm hoping to get the all clear to eat at least soft foods from the speech pathologist, because it sounds strange and awkward to try to go to work on public transit with 3-4 cans of food, and then to try to find a private place to use my tube. So depending on what happens at that appointment, I may start back to work a couple days a week in two weeks... or I may not. I hope the folks at work stay patient with me working from home!

I guess I'm halfway to the post-treatment PET scan, since my doctor said it's at the 10-12 week mark. I keep worrying that we didn't get it all, or it spread, and I guess those fears are natural. I try to keep my mind off of it, but it's hard to do some days.

So things are moving forward, and I feel like I need to list out the things I'm grateful for to convince myself that I'm being dumb for feeling so miserable about stuff sometimes. I have about 50% of my saliva working (maybe a bit less), which is great. My sense of taste seems to be at least 50% back too, at least from what I can tell from sipping water and a piece of orange gum I tried (which burned... but definitely tasted sweet and like orange). Now that I'm off the narcotics, the nausea is pretty much gone, so I'm taking in 4-5 cans a day, which is over 1000 calories a day. I'm still losing weight, but it's at a much slower and safer pace.

I'm grateful for all of those things. I realize on a logical level that I'm doing really well now compared to where I could be--not just in terms of cancer, but in terms of the side and after effects. I need to keep my Spock brain engaged to tell me this, so I stop feeling sorry for myself and start getting back to having a life!

I hope the beginning of July finds everyone else safe and healthy. :-)

CivilMatt

feel better
Hi laralyn,

I have too disagree with Friday the 13th being bad luck. Friday the 13th is when I had my loading dose of Erbitux and I hate to think I was jinxed.

Good job in getting off the pain patch, now you’ll be able to see for who we really are.

Going to work is one challenge, using your tube is another? Not that I was as fast as a gunslinger, but I could fill my syringe and let it rip with the best of them. You will have to give this some thought and come up with the easiest and quickest ways to use the tube. I only had to feed at home, so it was easy. As for the cans, get a bigger purse. I bet I can hide 4 or 5 cans of Jevity down my pants (you see I lost 40 pounds).

Don’t worry too much about the PET, your body is still fighting the fight. Be positive for yourself and your future.

Don’t guilt yourself for feeling miserable, you have a very good reason to feel that way (or more like 100 good reasons). If you have 50% saliva I’ll give you $50 for 10% of it (just kidding I don’t have $50 to give). You think you have 50% taste, that is great (no kidding).

Now you tell me you have Spock’s brain, is your real name Doctor McCoy? Laralyn, you sound pretty darn good, just don’t beat yourself up. We all feel lousy now and again. Sometimes now and again seem like all the time, but hopefully as you heal there will be more good times than bad.

Best,

Matt

hwt

CivilMatt said:

feel better
Hi laralyn,

I have too disagree with Friday the 13th being bad luck. Friday the 13th is when I had my loading dose of Erbitux and I hate to think I was jinxed.

Good job in getting off the pain patch, now you’ll be able to see for who we really are.

Going to work is one challenge, using your tube is another? Not that I was as fast as a gunslinger, but I could fill my syringe and let it rip with the best of them. You will have to give this some thought and come up with the easiest and quickest ways to use the tube. I only had to feed at home, so it was easy. As for the cans, get a bigger purse. I bet I can hide 4 or 5 cans of Jevity down my pants (you see I lost 40 pounds).

Don’t worry too much about the PET, your body is still fighting the fight. Be positive for yourself and your future.

Don’t guilt yourself for feeling miserable, you have a very good reason to feel that way (or more like 100 good reasons). If you have 50% saliva I’ll give you $50 for 10% of it (just kidding I don’t have $50 to give). You think you have 50% taste, that is great (no kidding).

Now you tell me you have Spock’s brain, is your real name Doctor McCoy? Laralyn, you sound pretty darn good, just don’t beat yourself up. We all feel lousy now and again. Sometimes now and again seem like all the time, but hopefully as you heal there will be more good times than bad.

Best,

Matt

Overall, it sounds like you
Overall, it sounds like you are way ahead of the game in several areas. Stay positive!

hwt

CivilMatt said:

feel better
Hi laralyn,

I have too disagree with Friday the 13th being bad luck. Friday the 13th is when I had my loading dose of Erbitux and I hate to think I was jinxed.

Good job in getting off the pain patch, now you’ll be able to see for who we really are.

Going to work is one challenge, using your tube is another? Not that I was as fast as a gunslinger, but I could fill my syringe and let it rip with the best of them. You will have to give this some thought and come up with the easiest and quickest ways to use the tube. I only had to feed at home, so it was easy. As for the cans, get a bigger purse. I bet I can hide 4 or 5 cans of Jevity down my pants (you see I lost 40 pounds).

Don’t worry too much about the PET, your body is still fighting the fight. Be positive for yourself and your future.

Don’t guilt yourself for feeling miserable, you have a very good reason to feel that way (or more like 100 good reasons). If you have 50% saliva I’ll give you $50 for 10% of it (just kidding I don’t have $50 to give). You think you have 50% taste, that is great (no kidding).

Now you tell me you have Spock’s brain, is your real name Doctor McCoy? Laralyn, you sound pretty darn good, just don’t beat yourself up. We all feel lousy now and again. Sometimes now and again seem like all the time, but hopefully as you heal there will be more good times than bad.

Best,

Matt

Overall, it sounds like you
Overall, it sounds like you are way ahead of the game in several areas. Stay positive!

katenorwood

CivilMatt said:

feel better
Hi laralyn,

I have too disagree with Friday the 13th being bad luck. Friday the 13th is when I had my loading dose of Erbitux and I hate to think I was jinxed.

Good job in getting off the pain patch, now you’ll be able to see for who we really are.

Going to work is one challenge, using your tube is another? Not that I was as fast as a gunslinger, but I could fill my syringe and let it rip with the best of them. You will have to give this some thought and come up with the easiest and quickest ways to use the tube. I only had to feed at home, so it was easy. As for the cans, get a bigger purse. I bet I can hide 4 or 5 cans of Jevity down my pants (you see I lost 40 pounds).

Don’t worry too much about the PET, your body is still fighting the fight. Be positive for yourself and your future.

Don’t guilt yourself for feeling miserable, you have a very good reason to feel that way (or more like 100 good reasons). If you have 50% saliva I’ll give you $50 for 10% of it (just kidding I don’t have $50 to give). You think you have 50% taste, that is great (no kidding).

Now you tell me you have Spock’s brain, is your real name Doctor McCoy? Laralyn, you sound pretty darn good, just don’t beat yourself up. We all feel lousy now and again. Sometimes now and again seem like all the time, but hopefully as you heal there will be more good times than bad.

Best,

Matt

Another trek fan !
Laralyn,
Hello there ! Like Matt (obviously) I love star trek....your reference to spock made me smile ! It sounds like you're on track with everything, and I'm praying for you that this continues ! We all have our what if's...and those days stink ! Stay positive, and remember we are all here for you ! Warmest regards, Katie

phrannie51

You tasted something? You have some saliva???
I am green with envy, girl!! It's good that you're able to swallow water now...I mean every week brings an improvement....I know patience isn't your strong suit, but honey things are getting better for you!! Going back to work might be a bit much for right now, but maybe a compromise will come up.

It all will come back by degrees, I'm just sure of it....

p

Sam999

phrannie51 said:

You tasted something? You have some saliva???
I am green with envy, girl!! It's good that you're able to swallow water now...I mean every week brings an improvement....I know patience isn't your strong suit, but honey things are getting better for you!! Going back to work might be a bit much for right now, but maybe a compromise will come up.

It all will come back by degrees, I'm just sure of it....

p

Hi Laralyn,
Definately
Hi Laralyn,

Definately sounds like lot of progress in postive direction. So happy for you. I jumped off the chair when you said taste. I thought it could take that could tke anywhere from weeks to months.

Sam