Hitting the six week mark

Laralyn

Today marks the sixth week since I completed radiation. It feels like a strange milestone because the improvements are so gradual and everything else is so constant that sometimes it feels like nothing is changing.

I had my appointment with the speech pathologist today. He cleared me for 12-18 oz of water and 12 oz of pureed foods a day. It's not enough to get me off the tube, but it's a start I guess. He wants to do a barium swallow test, and he's out next week so it will be the week after that. So I've got at least another 4-6 weeks on the tube, at a minumum.

I did have some issues with swallowing, probably from swelling or scar tissue in my throat. I'm jealous of all the folks here who are still eating normally, or relatively so, at this time frame! I asked how long it takes and he said it can take up to four months for folks who can't swallow at all, then said I'm more than halfway there so hopefully it will be resolved sooner. It's hard to find pre-pureed foods! I ended up just getting baby food, even though I know there are probably other options.

The Nystatin didn't seem to do much for my thrush. My doctor hasn't seen it yet so he said to discontinue the Nystatin and he'll take a look on Wednesday. He thinks it may be lingering mucositis instead of thrush... but I'm still voting thrush because it seems to be drying my mouth out more than it was!

I asked my doctor about returning to work in my office next week, which is downtown and requires a commute on public transit, and he said: "Keep in mind, you just completed what many consider the hardest type of cancer therapy outside of a bone marrow transplant. So keep this perspective when trying to return to work. We can discuss this more on Wednesday." That sounds like a very polite NO to me so it will probably be a couple more weeks. I'm getting tired of being of home, but I think the doctor is right. I get exhausted just going to the doctor's appointments!

Sometimes I wonder if the tiredness isn't lingering depression. I finally left a message for the cancer center's social worker this afternoon, and I'll talk to her next week. When I asked my radiation oncologist for an anti-depressant a couple weeks ago, he reluctantly prescribed one and said he'd rather a primary care physician handled it. The drug (Wellbutrin) made me have insomnia, I was super restless, and my thoughts were racing. I couldn't stand feeling that way so I quit taking it.

I don't think I really dealt with the reality of the situation on the front side of treatments because I was all about GETTING THE CANCER OUT. Now that I'm past that stage, I think I'm finally trying to cope with everything that happened and all the possibilities. I also think losing 50 pounds in 4-5 weeks wiped my body out, and some of what could be interpreted as depression is just genuine tiredness.

So, like last week, I'm going to end by focusing on the positives: I'm cleared to eat and drink even if the amount and type is limited and I'm off all pain meds but Aleve at this point. That seems like a smaller list of positives than I had last week, but it could be a sign of things getting better, right?

ditto1

Thanks for the update
sorry you are still having some issues, since we all know this is different for everyone and like snow flakes seems no two are exactly alike so just keep doing what you have been take it one day at a time. I appreciate your reply to my TearDrop Blog and as always you were there for me as you have been for others. We are here to support you. Not knowing about your work, I agree once you resume working Im sure if its 30 to 40 hours a week that could be tough, but who knows it may be just what you need to get out of the house and return to some normalcy, you will be able to judge that. Found out today I have Thrush II the episode so thats what Im treating this evening. Your probably correct loss of weight or muscle could have an effect on you, but as I have read on these blogs depression is an issue and should be taken seriously. I think everyone who goes thru this or any type of cancer are likely to get depressed the question being do they need meds or couseling? So as I said to you and others we will keep praying for you, and many others pray nitely for all of us so you will do fine. Just hang in there and thanks for be an inspiration to me and others.

CivilMatt

6 weeks
Hi Laralyn,

Glad to hear you are making progress. Don’t worry about being jealous of any of your fellow bus riders. Most of us have our backs against the wall on eating normally. I don’t think anybody ever gets away from the water bottle. I even read where John, who eats most of the fish in Tampa, never strays far from his sippy bottle (excuse me if I am off base here). What I am trying to say, you will catch up with the rest of us food eater wantabes.

Keep working on the Thrush and you will conquer it too. I was never defined as depressed but I did have a racing mind for awhile, I could not sleep. I used my anti-anxiety meds for that (Lorazapam), it worked wonders. The only problem I have with returning to work is stamina, I get so blasted tired. Lucky for me it is only part time. It is still embarrassing to be told “you look a little tired”’.

I am not sure if it gets any easier until you get some serious number of years behind you. You are right about getting all geared up for the torturous bus ride and then it is over. Now you have time to think about things, big things about life and mortality, the things that are far scarier then a silly little mask (which troubled me 35 times, thank you very much).

On a positive note, if you find yourself driving through the Willamette Valley give me a ring and I’ll blend you up a fresh Blue Berry Smoothie, they are real good (antioxidants and all).

Best,

Matt

Skiffin16

Fatigue and Depression
Both of these go hand in hand sometimes...

You are doing great, and pretty much right on schedule.

You are right in your mention of not having time initially to think of what all you were going through, you were in fight mode. Now all of that is kind of catching up, your treatment pace is slowing, so you have more time to deal with the reality.

Just try to stay positive...the tough physical part is almost over. Now it's a mental game that you have to play, staying positive, healing, recovery.....

Other factors on the fatigue are like you mentioned, very limited calorie intake, lost weight, lower hydration.

All things you need to concentrate on..you have to strive for a way to keep very well hydrated and get the calories into you... I also ate jarred slice peaches in light syrup...cold, easy to slide down and kept the throat muscles working.

MATT actually the water situation you mentioned was for several weeks post treatment. I'm at a point now (and for some time), that I have all of my saliva back. Other than I tend to dry out a little at night once asleep.

Food is like you mentioned, LOL..100% back.

Hang in there, stay focused and positive, you'll get there.

Unfortunately it just takes time, measured in weeks and months, not days for sure.

But, by this time next year, you'll be a 100% completely different person than the last few months have treated you.

I can only say trust me, and like my buddy Kent "believe"...

John

Tim6003

CivilMatt said:

6 weeks
Hi Laralyn,

Glad to hear you are making progress. Don’t worry about being jealous of any of your fellow bus riders. Most of us have our backs against the wall on eating normally. I don’t think anybody ever gets away from the water bottle. I even read where John, who eats most of the fish in Tampa, never strays far from his sippy bottle (excuse me if I am off base here). What I am trying to say, you will catch up with the rest of us food eater wantabes.

Keep working on the Thrush and you will conquer it too. I was never defined as depressed but I did have a racing mind for awhile, I could not sleep. I used my anti-anxiety meds for that (Lorazapam), it worked wonders. The only problem I have with returning to work is stamina, I get so blasted tired. Lucky for me it is only part time. It is still embarrassing to be told “you look a little tired”’.

I am not sure if it gets any easier until you get some serious number of years behind you. You are right about getting all geared up for the torturous bus ride and then it is over. Now you have time to think about things, big things about life and mortality, the things that are far scarier then a silly little mask (which troubled me 35 times, thank you very much).

On a positive note, if you find yourself driving through the Willamette Valley give me a ring and I’ll blend you up a fresh Blue Berry Smoothie, they are real good (antioxidants and all).

Best,

Matt

Hi Laralyn...
Gald to hear from you....

All sounds so familiar ....

For me it was all I could do to get the family ready while I was away getting treatments and as you said "getting the cancer out" ...then after tx it was like I was all alone (away from the doctors who I saw EVERYDAY .....then I was 100 miles away from my "team" of docs and limping along in pain and cooking ...it was a wierd and dare I say awkward time for me to adjust to ...

Prayers for you still coming ...

Tim

Laralyn

Skiffin16 said:

Fatigue and Depression
Both of these go hand in hand sometimes...

You are doing great, and pretty much right on schedule.

You are right in your mention of not having time initially to think of what all you were going through, you were in fight mode. Now all of that is kind of catching up, your treatment pace is slowing, so you have more time to deal with the reality.

Just try to stay positive...the tough physical part is almost over. Now it's a mental game that you have to play, staying positive, healing, recovery.....

Other factors on the fatigue are like you mentioned, very limited calorie intake, lost weight, lower hydration.

All things you need to concentrate on..you have to strive for a way to keep very well hydrated and get the calories into you... I also ate jarred slice peaches in light syrup...cold, easy to slide down and kept the throat muscles working.

MATT actually the water situation you mentioned was for several weeks post treatment. I'm at a point now (and for some time), that I have all of my saliva back. Other than I tend to dry out a little at night once asleep.

Food is like you mentioned, LOL..100% back.

Hang in there, stay focused and positive, you'll get there.

Unfortunately it just takes time, measured in weeks and months, not days for sure.

But, by this time next year, you'll be a 100% completely different person than the last few months have treated you.

I can only say trust me, and like my buddy Kent "believe"...

John

Dehydration is a battle right now!
I'm getting in 5 cans a day via tube now, which is about 1300 calories, so the weight loss has slowed down. I still struggle with hydration, though. I put water in my tube and sip all day but I still am not getting enough, I suspect. It's my goal for next week: to figure out a way to get more water in. I think my stomach shrank those weeks I was so sick, though, and it's a challenge to have enough time and room for 5 cans of food AND a couple liters of water!

Thanks for all the support and info, everyone. I decided to re-read the book Anti-Cancer, which was really great for comfort and info during the fighting phase. I need to get that fighting spirit back,

P.S. Chicken apple compote baby food is NASTY! ;-)

katenorwood

Laralyn said:

Dehydration is a battle right now!
I'm getting in 5 cans a day via tube now, which is about 1300 calories, so the weight loss has slowed down. I still struggle with hydration, though. I put water in my tube and sip all day but I still am not getting enough, I suspect. It's my goal for next week: to figure out a way to get more water in. I think my stomach shrank those weeks I was so sick, though, and it's a challenge to have enough time and room for 5 cans of food AND a couple liters of water!

Thanks for all the support and info, everyone. I decided to re-read the book Anti-Cancer, which was really great for comfort and info during the fighting phase. I need to get that fighting spirit back,

P.S. Chicken apple compote baby food is NASTY! ;-)

Hello Laralyn !
Yeap depression is a very real issue in our lives...but environmental issues have a big play in this. You are just beginning to heal, please give yourself a break ! When I say environmental issues I mean what we're being put through and living. Not everyone can understand what we go through on a daily basis just to get through an entire day. My lungs are shot...and getting tired and pissed I can't do a full days cleaning (basic) in my own home. So I do what I can and leave the rest til another day. I pray your issues with eating and drinking resolve quickly for you ! Be gentle with yourself, you need to give it time. I'm pulling for you Laralyn ! Katie

NoDuck

Laralyn said:

Dehydration is a battle right now!
I'm getting in 5 cans a day via tube now, which is about 1300 calories, so the weight loss has slowed down. I still struggle with hydration, though. I put water in my tube and sip all day but I still am not getting enough, I suspect. It's my goal for next week: to figure out a way to get more water in. I think my stomach shrank those weeks I was so sick, though, and it's a challenge to have enough time and room for 5 cans of food AND a couple liters of water!

Thanks for all the support and info, everyone. I decided to re-read the book Anti-Cancer, which was really great for comfort and info during the fighting phase. I need to get that fighting spirit back,

P.S. Chicken apple compote baby food is NASTY! ;-)

Food Pump
Have you considered the continuous feed food pump? We vetoed it at first but hubby was like you -- could not get in enough even getting up during the night for a "snack" of a can. I agree the stomach probably shrinks after such a dramatic and fast weight loss. We started with the pump a couple of weeks ago. He doesn't do it at night but during the day since he's pretty much housebound anyway. It's way too hot in Oklahoma in July to venture out much except for treatment. He got the pump at home on 7/3 and we were making progress on the nutrition and water, getting 4 and a half cans of 2Cal product (nearly 500 calories per can) and a liter or two of water per day.

Then he got the bacterial infection and ended up in the hospital on 7/8. We are in day 6 of hospitalization and he has gained about 6 pounds. The pump has been a lifesaver both in and out of the hospital.

Prayers and positive thoughts sent your way.
Deb

phrannie51

Laralyn said:

Dehydration is a battle right now!
I'm getting in 5 cans a day via tube now, which is about 1300 calories, so the weight loss has slowed down. I still struggle with hydration, though. I put water in my tube and sip all day but I still am not getting enough, I suspect. It's my goal for next week: to figure out a way to get more water in. I think my stomach shrank those weeks I was so sick, though, and it's a challenge to have enough time and room for 5 cans of food AND a couple liters of water!

Thanks for all the support and info, everyone. I decided to re-read the book Anti-Cancer, which was really great for comfort and info during the fighting phase. I need to get that fighting spirit back,

P.S. Chicken apple compote baby food is NASTY! ;-)

LOL on the Chicken Apple Compote...
they feed babies stuff like that? What happened to the jar of chicken...with a side applesauce, I wonder .

I believe that what we have here is a whole LOT of body tired, with an icing of depression....We do this disease one day at a time for SO long, and forget all that we have been thru, and that we haven't had a break from it. You body has been drug thru a knothole backwards...10 times. I keep forgetting to take my antidepressant, and tho...I can cry at the drop of a hat, it happens with sweet and sentimental things as easily as sad things...I can't see that as depressed...more like, fussy, maybe? Like a tired baby?

I can see wanting to get back in the groove...but wonder if you're not being premature, I'm just going by how I feel and you're only one week ahead of me...and you had one hell of a harder time...I've only had one week from hell, you went thru 5 weeks of hell. I am TIRED...period. I have days where I think that going back to work sounds great (I miss everyone)...but then I'll have two days where I can hardly keep my eyes open, and it's not because I'm bored or depressed...I'm exhausted...just sayin'.

p

hwt

phrannie51 said:

LOL on the Chicken Apple Compote...
they feed babies stuff like that? What happened to the jar of chicken...with a side applesauce, I wonder .

I believe that what we have here is a whole LOT of body tired, with an icing of depression....We do this disease one day at a time for SO long, and forget all that we have been thru, and that we haven't had a break from it. You body has been drug thru a knothole backwards...10 times. I keep forgetting to take my antidepressant, and tho...I can cry at the drop of a hat, it happens with sweet and sentimental things as easily as sad things...I can't see that as depressed...more like, fussy, maybe? Like a tired baby?

I can see wanting to get back in the groove...but wonder if you're not being premature, I'm just going by how I feel and you're only one week ahead of me...and you had one hell of a harder time...I've only had one week from hell, you went thru 5 weeks of hell. I am TIRED...period. I have days where I think that going back to work sounds great (I miss everyone)...but then I'll have two days where I can hardly keep my eyes open, and it's not because I'm bored or depressed...I'm exhausted...just sayin'.

p

On your way...
It's a roller coaster of ups and downs. My niece reminded me yesterday that I am on "God's schedule" not mine. So much truth to that. It is an emotional roller coaster. Give in to the bad days and enjoy the good ones. Before you know it the good will start to out number the bad ones. You are 6 weeks out...that is awesome!!!! Hydration and nutrition remain the key. Depression swings back and forth like all the other side effects. I do well with Lorazepam or xanax. Give a little extra push sometimes. I went back to bed this morning but my sister called and now dressed and heading to casino with family. Without that nudge, I would have laid around all day. Now that you are off all pain meds are you able to drive? That was a milestone for me. There is allot of truth to the depression when all of the Tx and whirlwind of appts. stops and you are left to deal with your thoughts. You are not alone. Prayers your way!

Laralyn

Laralyn said:

Dehydration is a battle right now!
I'm getting in 5 cans a day via tube now, which is about 1300 calories, so the weight loss has slowed down. I still struggle with hydration, though. I put water in my tube and sip all day but I still am not getting enough, I suspect. It's my goal for next week: to figure out a way to get more water in. I think my stomach shrank those weeks I was so sick, though, and it's a challenge to have enough time and room for 5 cans of food AND a couple liters of water!

Thanks for all the support and info, everyone. I decided to re-read the book Anti-Cancer, which was really great for comfort and info during the fighting phase. I need to get that fighting spirit back,

P.S. Chicken apple compote baby food is NASTY! ;-)

Thanks again for all the support!
It really helps to know that other folks have gone or are going through the same thing. I did some reading on "cancer related fatigue" over the weekend, and it sounds like a match for my symptoms. It's hard to know whether to let myself do nothing and rest, or whether I should make the effort to try to do things. Part of me feels like I'll never build energy again unless I start doing more, but I'm just... so... tired all the time.

hwt

Laralyn said:

Thanks again for all the support!
It really helps to know that other folks have gone or are going through the same thing. I did some reading on "cancer related fatigue" over the weekend, and it sounds like a match for my symptoms. It's hard to know whether to let myself do nothing and rest, or whether I should make the effort to try to do things. Part of me feels like I'll never build energy again unless I start doing more, but I'm just... so... tired all the time.

Listen to your body
Can't tell you how many days I woke up and said "today I'm going to...." then ended up drinking an Ensure and going back to bed. My surgery was in January so everyday when I woke up I could see my winter clothes in the closet. I'd listen to the news and hear that it was day ten of 100+ temps. Well here it is the middle of July and I finally just got the winter clothes put away. Listen to your body, you will know when the time is right to start doing a little more. Start small and take naps, before you know it, the naps will stop on their own.

hwt

Laralyn said:

Thanks again for all the support!
It really helps to know that other folks have gone or are going through the same thing. I did some reading on "cancer related fatigue" over the weekend, and it sounds like a match for my symptoms. It's hard to know whether to let myself do nothing and rest, or whether I should make the effort to try to do things. Part of me feels like I'll never build energy again unless I start doing more, but I'm just... so... tired all the time.

Listen to your body
Can't tell you how many days I woke up and said "today I'm going to...." then ended up drinking an Ensure and going back to bed. My surgery was in January so everyday when I woke up I could see my winter clothes in the closet. I'd listen to the news and hear that it was day ten of 100+ temps. Well here it is the middle of July and I finally just got the winter clothes put away. Listen to your body, you will know when the time is right to start doing a little more. Start small and take naps, before you know it, the naps will stop on their own.