A Year in the Life
Yesterday was the one-year anniversary of kind of the last step in treatment. (I was SCC HPV+ tonsil and lymph node) We did tonsillectomy end August, rads and chemo Oct to early Dec, and finally neck dissection February. It was the usual story: lost 40 lbs, blood clots, nearly died, threw up for a month, not really that much fun, yadda, yadda. Neck dissection not extensive, tubes came out after a few days and then the stitches came out a year ago yesterday. Which was also when he told us of the results of the biopsies of it all. He –the ENT - was quite surprised that the results were already on his screen there in the examining room and took a few minutes to read them. Hmmmm. Ummmm. 5, 10, 15, 20, hmmm. Mary, of course, hadn’t breathed from the moment when he first said that he had the results. Then he told us that they were all clear, either never had or dead. We received the news with great satisfaction, you might say. We pretty much consider that the end of the treatment phase. Since then, the 6 mo scan was all clear and I have the one-year scan in a week. We expect no problems.
So, where are we? Life is great – not perfect - but great. If I am just sitting and working at the computer, I don’t notice the dryness, for example. I write this as I am also eating an English muffin with lots of butter and orange marmalade…and lots of water. And a cup of coffee. Did I mention water, too? Actually, as Mary says, I can “pass” for normal eating if people don’t mind someone so slow and careful and very thirsty.
Beyond eating, talking is a problem. Did I mention water? Basically almost every conversation soon requires water. This could eventually be a problem as I will be leading discussions in Lebanon and Ghana in the next month and I am just going to have to swig it.
Back to eating, I can eat – almost – anything but am still mostly on the soft side. Did I mention water? It’s only recently that I’ve begun to manage bread of any kind because it usually just becomes a thick mass. Crunchier bread, if any, is better.
Energy is good, obviously, and I never feel exhausted after hockey even if I play two in a row. Mentally, I am pretty good as well and accomplishing some good work in Mexico and elsewhere. Those first few trips out of the country starting last Jan were awfully tough as I could barely eat and barely think or talk and I was doing it in Spanish, of course. The “gente” must have had an awful lot of “paciencia” with me.
Emotionally, I am good and closer than ever to my wife and family, which hardly seemed possible before. I don’t think I went through any Scrooge-like transformation but I am more appreciative of time and mortality and accomplishments and enjoyment. On the other hand, I am a man in his 50s so this may not be entirely cancer’s doing.
Anyway, before this all gets too self-indulgent – too late! – or maudlin, let me say that I am very glad to be here and glad to ride along with you folks on the way. Doug
Comments
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Thanks Doug
Its good to see examples of recovery. Good reinforcment to keep our eyes on the distant horizon, not just the frustration of today. Funny you should mention bread. It truly is the hardest thing in the world to eat. Without adding water, which really makes it a different compound.
BTW, I had a devil of a time with international travel especially after 9/11, when security was so tight you couldn't get even an empty water bottle through airport security. That first hour or so can be pretty panicky when you so desperately need a sip, and there's no way to do it. Nowadays I just take an empty bottle and lid, and fill the darn thing on the far side of security. Then I'm never at a loss for H2O.
Best regards,
Pat0 -
I want my bottle!longtermsurvivor said:Thanks Doug
Its good to see examples of recovery. Good reinforcment to keep our eyes on the distant horizon, not just the frustration of today. Funny you should mention bread. It truly is the hardest thing in the world to eat. Without adding water, which really makes it a different compound.
BTW, I had a devil of a time with international travel especially after 9/11, when security was so tight you couldn't get even an empty water bottle through airport security. That first hour or so can be pretty panicky when you so desperately need a sip, and there's no way to do it. Nowadays I just take an empty bottle and lid, and fill the darn thing on the far side of security. Then I'm never at a loss for H2O.
Best regards,
Pat
Yes, Pat, I always try to time it so I take my last swig just before going through security and then as soon as I am through, refilling at a fountain. Even the empty one they sometimes don't like but I point to my neck scar and speak hoarsely about cancer and they usually let it through though a couple of times they have taken it and swabbed for explosive residue... two minutes after I just drank out of it. Best not to fight. Doug0 -
Listen to your wifeGoalie said:I want my bottle!
Yes, Pat, I always try to time it so I take my last swig just before going through security and then as soon as I am through, refilling at a fountain. Even the empty one they sometimes don't like but I point to my neck scar and speak hoarsely about cancer and they usually let it through though a couple of times they have taken it and swabbed for explosive residue... two minutes after I just drank out of it. Best not to fight. Doug
Hi Goalie, I'm glad Mary made you post. I've followed along since your diagnosis and am here to celebrate with you. We should never question sharing good news here.0 -
He Shoots!!ratface said:Listen to your wife
Hi Goalie, I'm glad Mary made you post. I've followed along since your diagnosis and am here to celebrate with you. We should never question sharing good news here.
Ohhh, what a save by Goalie! Way to go Doug and nice post!
Greg0 -
Dougie!
Thanks for sharing the details. Made my day. I do resemble most of your remarks, myself, at nearly 21 months out from end of chemo/rads. Love crunchy bread. As Hal has mentioned before, fluffy stuff just doesn't go down.
Deb (nearly passing for normal - with water)0 -
doug and D LewisD Lewis said:Dougie!
Thanks for sharing the details. Made my day. I do resemble most of your remarks, myself, at nearly 21 months out from end of chemo/rads. Love crunchy bread. As Hal has mentioned before, fluffy stuff just doesn't go down.
Deb (nearly passing for normal - with water)
thanks for bringing us back to the every day activities. I am 22 months out, (30 days ahead of you Deb!)and have the same eating issues. However, I ate a ham sandwich and chips with ice tea at subway with a friend last week. FIRST TIME for a whole sandwich out in public. Hooray! I find milk is my best flush when eating. However< I have a water bottle in my car, near the TV and next to bed. When I go for a walk, wife says, do you have water????? I too, am happy to be here and glad that the new normal is not to difficult.
all the best
Steve0 -
doug and D LewisD Lewis said:Dougie!
Thanks for sharing the details. Made my day. I do resemble most of your remarks, myself, at nearly 21 months out from end of chemo/rads. Love crunchy bread. As Hal has mentioned before, fluffy stuff just doesn't go down.
Deb (nearly passing for normal - with water)
double post....sorry0 -
Touche!hawk711 said:doug and D Lewis
double post....sorry
FYI, you are a great writer!
I am 20 months out. I ate my favorite snack yesterday and Enjoyed it, I truly thought I never would again....popcorn! lol With lots of fluids of course. Oh what a difference time does make! I have water Everywhere I go. I add tangerine oil drops for flavor and it is suppose to be good for your kidneys. Win win I say!
Thanks for sharing, I love your humor as well. I appreciate being here amongst those on this special journey we are on. God Speed!
Linda0 -
Nice Read Doug
Carbonated water works best for me when eating. The bubbles seem to refresh the mouth a little.
During the day, I usually have the ubiquitous bottle of water and chewing gum. The gum helps with the saliva to a certain extent. Between the 2, I do pretty well.
Recaldent gum supposedly helps to strengthen teeth. Not sure if it really does what it claims, but if I"m going to chew gum, that's the stuff for me. So far, my dental check ups have been good, so maybe it does help.
Good luck with your scan next week Doug. Cheers.
Jimbo0 -
Everyone sounds great.Jimbo55 said:Nice Read Doug
Carbonated water works best for me when eating. The bubbles seem to refresh the mouth a little.
During the day, I usually have the ubiquitous bottle of water and chewing gum. The gum helps with the saliva to a certain extent. Between the 2, I do pretty well.
Recaldent gum supposedly helps to strengthen teeth. Not sure if it really does what it claims, but if I"m going to chew gum, that's the stuff for me. So far, my dental check ups have been good, so maybe it does help.
Good luck with your scan next week Doug. Cheers.
Jimbo
Everyone sounds great. Myhusband eats grilled ham, egg and cheese sammies everyday. It seems to be the only food he can eat, besides pasta. He is going on 10 months out and is starting to get depressed, i believe. He has short term memory loss, balance issues, and can't stay on task at all. He used to be so sharp, and is asking himself. What if this is as good as it gets???? He did an MRI the other day and it came back normal. He has not worked in a year and he works offshore in the USA and out. He is a projet manager and worls in the shipyards and at this time. He can't perform the duties that is required of him. Poor guy is soooo frustrated.0 -
Hiarndog64 said:Everyone sounds great.
Everyone sounds great. Myhusband eats grilled ham, egg and cheese sammies everyday. It seems to be the only food he can eat, besides pasta. He is going on 10 months out and is starting to get depressed, i believe. He has short term memory loss, balance issues, and can't stay on task at all. He used to be so sharp, and is asking himself. What if this is as good as it gets???? He did an MRI the other day and it came back normal. He has not worked in a year and he works offshore in the USA and out. He is a projet manager and worls in the shipyards and at this time. He can't perform the duties that is required of him. Poor guy is soooo frustrated.
Have they come up with an explanation for the problems yet? sorry to pester you, but I've been hoping to hear of progress.
Pat0 -
No not yet, He will meetlongtermsurvivor said:Hi
Have they come up with an explanation for the problems yet? sorry to pester you, but I've been hoping to hear of progress.
Pat
No not yet, He will meet with his neurologist on Wednesday to discus the results from the MRI and EEG, Oh yeah and electric shock testing (my husband called it the torture chamber).
I will update here on Wednesday, once I get some feedback.0 -
Thank you
And thank the lovely Dr. Mary. I never hit the one year mark on the first cancer, can't wait to post something like this in August. So glad for your recovery. I know that there are some wonderful side effects that you live with daily but like all of us, very glad to be here. I have been busy (really, not just in a chair watching!) My daughter announced she was pregnant (forgot the marriage part!) then proceeded to have a blood clot in her leg. We have just found out the hard way that it seems to run in her biological family, both of my children are adopted. She was planning on moving before this happened and had given notice. I was packing and cleaning and packing some more this weekend, glad to rest today. Having not sick days left I will not be helping with the rest of the move, my husband (most excellent caregiver!) will be driving the truck to Oregon. Daughter will stay with me and we will fly her up (plane not broom!) when she is given a go ahead from the doctor. Life doesn't stop because we have had cancer.
I have truly appreciated your posts over the year, love hearing from your wife also. Enjoy this new season in your life and pack a lot of bottled water for your travels.0 -
Frustrationarndog64 said:Everyone sounds great.
Everyone sounds great. Myhusband eats grilled ham, egg and cheese sammies everyday. It seems to be the only food he can eat, besides pasta. He is going on 10 months out and is starting to get depressed, i believe. He has short term memory loss, balance issues, and can't stay on task at all. He used to be so sharp, and is asking himself. What if this is as good as it gets???? He did an MRI the other day and it came back normal. He has not worked in a year and he works offshore in the USA and out. He is a projet manager and worls in the shipyards and at this time. He can't perform the duties that is required of him. Poor guy is soooo frustrated.
I have followed you guys since the beginning and am so happy that you got through the initial stuff. The recovery can be frustrating, I understand. For months I was sort of slow and sort of confused. Unfortunately, I was working, but people were understanding.
Can I follow up on my earlier suggestion for something for him to do? When I learned I had cancer and that treatment was going to knock me out I planned a job. I scanned the family slides from the 50s and 60s. I am the family archivist and had always hoped to get to this job. Fortunately, cancer came along in answer to my desires. ;^)
This was a good thing to tackle because I could do as much or as little in any day as I felt like and it didn't take too much deep thinking other than loading and unloading slides and typing in identification and such. I got over 400 in there year-by-year and then was able to show them at a family beach vacation my mother had for her 80th. Now all the kids and even grandkids have copies of these.
A variation on this is one I mentioned though this takes a little more mental acuity. Work on your genealogy. Start with your own info, go for your parents, etc. You can do much of this online if you want but I would be pleased to send you a Family Tree Maker program (not pirated, just a previous edition) if you like. Doing this brings you to many other places and times and takes you right away from the present problems. And you can pick it up and put it down since the program remembers where you are.
I do hope that these suggestions help. Doug0 -
Hubbie's Diet?arndog64 said:Everyone sounds great.
Everyone sounds great. Myhusband eats grilled ham, egg and cheese sammies everyday. It seems to be the only food he can eat, besides pasta. He is going on 10 months out and is starting to get depressed, i believe. He has short term memory loss, balance issues, and can't stay on task at all. He used to be so sharp, and is asking himself. What if this is as good as it gets???? He did an MRI the other day and it came back normal. He has not worked in a year and he works offshore in the USA and out. He is a projet manager and worls in the shipyards and at this time. He can't perform the duties that is required of him. Poor guy is soooo frustrated.
Arndog, I'm sure the answer is a mixture of things, but I'm wondering if one issue is nutrition. I don't really have the answers about this one - long-term deficiencies of things like folic acid in your diet can affect memory and nerves, for example. I'm not suggesting that as the answer, but since he's not able to eat a reasonably balanced diet, there might indeed be some deficiencies that are not covered by supplements. You might have already tried talking to a dietician, but you might want to consider doing so again. It took a few months, but we all noticed a difference in Doug's "fuzziness of thought" once he was able to get both real food vitamins (even if it was pureed carrots mixed in with the pasta) in addition to the ones he was getting from Boost Plus.
I do want to second Doug's suggestion. It might be hard for a guy who was such a hard worker as your husband to think of small projects as "work" but having a reason to get out of bed in the morning, as well as something you can look at and feel that you've accomplished something, really keeps you more alert and less depressed.
Last question (very out of the blue) - has he ever been tested for celiac disease? There seems to be a link between celiac and ADD - if he was borderline before, the treatment could have pushed him over the edge. Just a though (too many random thoughts tonight).
Hope things get better - we are familiar with the frustration thing.0 -
Hubbie's Diet?arndog64 said:Everyone sounds great.
Everyone sounds great. Myhusband eats grilled ham, egg and cheese sammies everyday. It seems to be the only food he can eat, besides pasta. He is going on 10 months out and is starting to get depressed, i believe. He has short term memory loss, balance issues, and can't stay on task at all. He used to be so sharp, and is asking himself. What if this is as good as it gets???? He did an MRI the other day and it came back normal. He has not worked in a year and he works offshore in the USA and out. He is a projet manager and worls in the shipyards and at this time. He can't perform the duties that is required of him. Poor guy is soooo frustrated.
Arndog, I'm sure the answer is a mixture of things, but I'm wondering if one issue is nutrition. I don't really have the answers about this one - long-term deficiencies of things like folic acid in your diet can affect memory and nerves, for example. I'm not suggesting that as the answer, but since he's not able to eat a reasonably balanced diet, there might indeed be some deficiencies that are not covered by supplements. You might have already tried talking to a dietician, but you might want to consider doing so again. It took a few months, but we all noticed a difference in Doug's "fuzziness of thought" once he was able to get both real food vitamins (even if it was pureed carrots mixed in with the pasta) in addition to the ones he was getting from Boost Plus.
I do want to second Doug's suggestion. It might be hard for a guy who was such a hard worker as your husband to think of small projects as "work" but having a reason to get out of bed in the morning, as well as something you can look at and feel that you've accomplished something, really keeps you more alert and less depressed.
Last question (very out of the blue) - has he ever been tested for celiac disease? There seems to be a link between celiac and ADD - if he was borderline before, the treatment could have pushed him over the edge. Just a though (too many random thoughts tonight).
Hope things get better - we are familiar with the frustration thing.0 -
Went to his neurologistKTeacher said:Thank you
And thank the lovely Dr. Mary. I never hit the one year mark on the first cancer, can't wait to post something like this in August. So glad for your recovery. I know that there are some wonderful side effects that you live with daily but like all of us, very glad to be here. I have been busy (really, not just in a chair watching!) My daughter announced she was pregnant (forgot the marriage part!) then proceeded to have a blood clot in her leg. We have just found out the hard way that it seems to run in her biological family, both of my children are adopted. She was planning on moving before this happened and had given notice. I was packing and cleaning and packing some more this weekend, glad to rest today. Having not sick days left I will not be helping with the rest of the move, my husband (most excellent caregiver!) will be driving the truck to Oregon. Daughter will stay with me and we will fly her up (plane not broom!) when she is given a go ahead from the doctor. Life doesn't stop because we have had cancer.
I have truly appreciated your posts over the year, love hearing from your wife also. Enjoy this new season in your life and pack a lot of bottled water for your travels.
Went to his neurologist today, all is well upstairs. She seems to think mild fiber neuropathy and stress/anxiety related. I agree, I think nutrition plays a big roll in all this mess. He does not eat much, he does drink carnation breakfast drinks everyday. She has also referred him to psycho therapy. On the MRI she did say he has a cyst in his sinus passage, no cancer. Should we notify his ent with this finding? By the way he forgot his wallet at home today.0 -
this is great newsarndog64 said:Went to his neurologist
Went to his neurologist today, all is well upstairs. She seems to think mild fiber neuropathy and stress/anxiety related. I agree, I think nutrition plays a big roll in all this mess. He does not eat much, he does drink carnation breakfast drinks everyday. She has also referred him to psycho therapy. On the MRI she did say he has a cyst in his sinus passage, no cancer. Should we notify his ent with this finding? By the way he forgot his wallet at home today.
On the sinus thing, that's a benign cyst. Common, and not a problem. I've had one since my first CT done clear back in 1998. Sure, send a ccopy of it to the ENT, but don't sweat it.
Stress? Anxiety? Imagine that, lol! So that's about the best results you could have wished for. Psychotherapy, attention to nutrition, exercise, whatever it takes. This story should have a happy ending.
Pat0 -
I agree Pat.. Now, it'slongtermsurvivor said:this is great news
On the sinus thing, that's a benign cyst. Common, and not a problem. I've had one since my first CT done clear back in 1998. Sure, send a ccopy of it to the ENT, but don't sweat it.
Stress? Anxiety? Imagine that, lol! So that's about the best results you could have wished for. Psychotherapy, attention to nutrition, exercise, whatever it takes. This story should have a happy ending.
Pat
I agree Pat.. Now, it's getting him on track. That is the hard part. i work all day and can not make all his meals and half the time he forgets to eat. Still no muscle mass and weight pretty much ranges between 132 on a good day and 126 on a bad day. He is too weak to do much of anything. I see some light weights and a weekly meal planner and task planner to help get him on track. Now this should get interesting.LOL!! We have our 3rd ENT follow up next month. Scope time!!!0
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