It was a beautiful sight!
Our Thanksgiving menu included turkey, mashed potatoes, gravy, stuffing, asparagus, sweet potato bread pudding, cranberry sauce, crescent rolls and pumpkin pie, but seeing Sam sitting at the table with a dollop of everything on his plate was huge; and the best news is that he was able to swallow a little bit (about a teaspoon) of everything. It was awesome!!!
This Thanksgiving holiday we had a triple blessing. Not only did our son Max and daughter-in-law Leslie drive in from Chicago, but my parents were able to join us for the holiday too! And, thanks to the marvels of technology, we were able to video conference with our daughter Deanna and her and her boyfriend Eric who reside in Arizona (along with Eric’s father, brother and sister who were visiting them) on the X-Box 360 which was so cool.
Unfortunately, at this writing, I don’t have Thanksgiving photos to post, but I hope to have some to share, soon.
Since my last post almost a week ago, we have a lot of praises to share. Sam is still taking several naps during the day, but nothing like a week ago, which tells me that he has adjusted to the dosage change. And, if all goes well, he will try to reduce the pain meds down a little more this week with the hopes of a twice a day dose instead of three times a day. His throat is still sore and it still hurts if he talks a lot, but his voice is sounding a little better – not so much like “Froggy” from “Our Gang - The Little Rascals”.
The biggest praise is that for the last three days he has increased his formula from 4 to 5 cans per day which means he’s getting 1875 calories per day instead of 1500/day which should give him more energy too. He is also trying to eat a little solid food every day. This is progress.
Saturday, November 29, 2008
Sunday, November 23, 2008
A lot of this.
Sam has been sleeping a lot this weekend. He has gone from 80 mg. to 50 mg. of his pain meds within a week and from what I've read, the side effects of withdrawal are fatigue, sweats/chills, watery eyes, nausea, and constant yawning. That is a pretty accurate description of how he's been feeling for several days. But it also said those symptoms should only last for about a week, so I expect he will be adjusting soon.
I have been encouraging him to try to eat food and today he had a few tablespoons of a recipe I found in the Budwig Diet. You mix 3 tablespoons of flax seed oil with 6 tablespoons of low fat cottage cheese and blend it well. Then grind 2 tsp of flax seeds and add to the mixture. It actually didn't taste bad and he was able to swallow it and it didn't taste awful to him.
If you are unfamiliar with the Budwig diet, there are plenty of links to information about it on the web, but essentially it is a diet that helps fight cancer naturally. Many people have had success with this diet and it has been studied scientifically and shown to be effective for some cancers.
Sam has tried vanilla ice cream which burned his throat - it's the sugar content. Juicy Juice grape flavor tasted terrible to him and he didn't like vanilla yogurt he tried. He's going to try eating cream of wheat cereal again this week. We are hoping that he may be able to tolerate some mashed potatoes, gravy and turkey on Thanksgiving. So, if you think of Sam, pray that he would be able to enjoy some table food on Thanksgiving - that would give him a boost for sure.
I think one of the hardest things for Sam is that this "recovery process" takes a very long time. It is hard to be this ill for this long and they say it takes a year to recover. That's a hard thing to wrap your mind around. You wonder, what could be taking so long? I think it's hard because the outside of his neck looks fine - but the radiation did so much damage, the body has a lot of repair work to do and that takes energy too.
I have been encouraging him to try to eat food and today he had a few tablespoons of a recipe I found in the Budwig Diet. You mix 3 tablespoons of flax seed oil with 6 tablespoons of low fat cottage cheese and blend it well. Then grind 2 tsp of flax seeds and add to the mixture. It actually didn't taste bad and he was able to swallow it and it didn't taste awful to him.
If you are unfamiliar with the Budwig diet, there are plenty of links to information about it on the web, but essentially it is a diet that helps fight cancer naturally. Many people have had success with this diet and it has been studied scientifically and shown to be effective for some cancers.
Sam has tried vanilla ice cream which burned his throat - it's the sugar content. Juicy Juice grape flavor tasted terrible to him and he didn't like vanilla yogurt he tried. He's going to try eating cream of wheat cereal again this week. We are hoping that he may be able to tolerate some mashed potatoes, gravy and turkey on Thanksgiving. So, if you think of Sam, pray that he would be able to enjoy some table food on Thanksgiving - that would give him a boost for sure.
I think one of the hardest things for Sam is that this "recovery process" takes a very long time. It is hard to be this ill for this long and they say it takes a year to recover. That's a hard thing to wrap your mind around. You wonder, what could be taking so long? I think it's hard because the outside of his neck looks fine - but the radiation did so much damage, the body has a lot of repair work to do and that takes energy too.
Anyway, it is wonderful to think that my Sam has a chance to beat this cancer. What's a year? There are some wonderful friends of ours who would give anything to have that chance. We are grateful for this chance.
Our fondest regards to all of you who are reading this blog and may you have a Happy Thanksgiving. If you have time to post a comment, I'd love to hear what you are thankful for this Thanksgiving Holiday.
Maddy
Tuesday, November 18, 2008
Roseanna Roseannadanna moments
"It's like my father always use to say, it's always somethin. If it ain't one thing, it's another."
Seriously, Sam could use your prayers. He's a little discouraged. The swallowing is sort of working again, but the choking/drowning feeling he experienced really halted his progress. He has since been able to swallow his pills with water but he is really hesitant to try to eat food. Even with Dr. Celin's expert opinion that swallowing food is easier than water, he hasn't tried yet. I think he just wants to take it slow and may just need to attempt it when he's ready.
Of course that makes the line I walk more difficult because I want to push him and say, "But Dr. Celin said... blah, blah, blah... don't you believe him?... blah, blah, blah." But then I realize that I wouldn't want someone to push me into a pool if I wasn't ready. So, there's the answer, right?
I think the fact that Thanksgiving is coming and he was hoping to be further along with the food issue has put a damper on his mood. The idea of eating a piece of turkey thigh was starting to sound good to him. Not that he's going around with a long face, it's just that he's sick of being sick. He wants to be well again and it's not happening as fast as he would like.
On the lighter side, I think I know why Sam is tired. It's cause he’s working in his sleep. Figuratively, of course. It’s rather humorous to me (not so much to him) but the meds he’s on cause him to have very vivid dreams and so he talks in his sleep quite a bit and makes gestures - like, for example, he'll look like he's washing his hands or like he's working the remote. I have trouble sleeping cause when he starts to talk, I'm nosey and want to know what he's going to say. Mostly he mumbles stuff I can't understand. Every once in a while it's pretty clear. Like one night he said, "I'll get that, Jim." When I quizzed him about it the next day, he said that he was dreaming he was in the audience of the David Letterman Show and someone was performing some tricks with smoke and he was participating. I guess you had to be there.
Well, I guess the best course of action is to take things as they come, day-by-day, and continually remind ourselves to be thankful Sam's alive and has a chance to beat this cancer. It would be great to be further ahead in this process and yet I remind myself that they say it takes a year to recover from this treatment.
Please pray for courage for Sam and patience for me.
Seriously, Sam could use your prayers. He's a little discouraged. The swallowing is sort of working again, but the choking/drowning feeling he experienced really halted his progress. He has since been able to swallow his pills with water but he is really hesitant to try to eat food. Even with Dr. Celin's expert opinion that swallowing food is easier than water, he hasn't tried yet. I think he just wants to take it slow and may just need to attempt it when he's ready.
Of course that makes the line I walk more difficult because I want to push him and say, "But Dr. Celin said... blah, blah, blah... don't you believe him?... blah, blah, blah." But then I realize that I wouldn't want someone to push me into a pool if I wasn't ready. So, there's the answer, right?
I think the fact that Thanksgiving is coming and he was hoping to be further along with the food issue has put a damper on his mood. The idea of eating a piece of turkey thigh was starting to sound good to him. Not that he's going around with a long face, it's just that he's sick of being sick. He wants to be well again and it's not happening as fast as he would like.
On the lighter side, I think I know why Sam is tired. It's cause he’s working in his sleep. Figuratively, of course. It’s rather humorous to me (not so much to him) but the meds he’s on cause him to have very vivid dreams and so he talks in his sleep quite a bit and makes gestures - like, for example, he'll look like he's washing his hands or like he's working the remote. I have trouble sleeping cause when he starts to talk, I'm nosey and want to know what he's going to say. Mostly he mumbles stuff I can't understand. Every once in a while it's pretty clear. Like one night he said, "I'll get that, Jim." When I quizzed him about it the next day, he said that he was dreaming he was in the audience of the David Letterman Show and someone was performing some tricks with smoke and he was participating. I guess you had to be there.
Well, I guess the best course of action is to take things as they come, day-by-day, and continually remind ourselves to be thankful Sam's alive and has a chance to beat this cancer. It would be great to be further ahead in this process and yet I remind myself that they say it takes a year to recover from this treatment.
Please pray for courage for Sam and patience for me.
Monday, November 17, 2008
It's all in your head - literally and figuratively!
We were squeezed onto Dr. Celin's schedule today to determine the cause of Sam's sudden problem with swallowing, and he seems to feel that this experience is probably just a reflex action by the body.
After examining Sam, Dr. Celin said he didn't think there was anything different and that once you try to swallow and choke, your body tends to tense up and that just makes it harder to swallow. It's kind of like riding a bike after you haven't ridden one for a while - you are rusty and lose the technique. The same holds true for swallowing - Sam's a bit rusty. He also had no real explanation for the hiccups Sam has been experiencing.
He suggested that Sam continue to try to eat and drink and he gave Sam a prescription for a "Modified Barium Swallow" test to be scheduled in a week - if Sam feels the situation hasn't improved. This test determines if therapy would be beneficial.
Dr. Celin reiterated what Lori, Dr. Chen's nurse, said - that while it might seem strange, water is the hardest thing to swallow. He suggested that Sam thicken the water or try something with more substance. He also said that because of all the radiation, his tissues are damaged and that makes it more difficult to swallow water.
I want to thank our friend Larry Satariano, who is a physical therapist, for taking some time to talk with Sam last night and who gave him some pointers on some swallowing techniques. That helped.
Anyway, we are feeling a little relieved and suspect that this situation may have been caused by the exams last week, but we can't be certain and the doc wasn't going there. But, what do we know, right? - it's always dangerous to be an armchair physician and that's one more reason to get the professional perspective. Time will tell.
Thanks for your prayers and support. We are grateful to have been blessed with such great friends.
After examining Sam, Dr. Celin said he didn't think there was anything different and that once you try to swallow and choke, your body tends to tense up and that just makes it harder to swallow. It's kind of like riding a bike after you haven't ridden one for a while - you are rusty and lose the technique. The same holds true for swallowing - Sam's a bit rusty. He also had no real explanation for the hiccups Sam has been experiencing.
He suggested that Sam continue to try to eat and drink and he gave Sam a prescription for a "Modified Barium Swallow" test to be scheduled in a week - if Sam feels the situation hasn't improved. This test determines if therapy would be beneficial.
- For those who like the detail - The test procedure is:
You will be given small amounts of a barium preparation of varying consistencies from thin liquids to paste to a piece of coated cookie.
Varying the amounts and consistency of the contrast material allows your doctor to determine which types of food are difficult for you to swallow and to locate the structure responsible for the trouble. The fluoroscopic screen allows the physician to view the results as the test takes place.
The test is usually performed with a speech pathologist present who can assess your swallowing ability and devise a strategy to correct the problem. You may be asked to change your head position, breathing pattern, chewing habits, or the consistency of your food.
Dr. Celin reiterated what Lori, Dr. Chen's nurse, said - that while it might seem strange, water is the hardest thing to swallow. He suggested that Sam thicken the water or try something with more substance. He also said that because of all the radiation, his tissues are damaged and that makes it more difficult to swallow water.
I want to thank our friend Larry Satariano, who is a physical therapist, for taking some time to talk with Sam last night and who gave him some pointers on some swallowing techniques. That helped.
Anyway, we are feeling a little relieved and suspect that this situation may have been caused by the exams last week, but we can't be certain and the doc wasn't going there. But, what do we know, right? - it's always dangerous to be an armchair physician and that's one more reason to get the professional perspective. Time will tell.
Thanks for your prayers and support. We are grateful to have been blessed with such great friends.
Saturday, November 15, 2008
A Bit Frustrated and Confused
For some unexplained reason, Sam seems to be having trouble swallowing today. He says it seems like the water or whatever just seems to sit at the back of his throat and won't go down. This is not only confusing, it's a bit unnerving! When he tried swallowing his medication today, he ended up having to cough up and spit out the water because it wouldn't go down and he felt like he was going to drown.
So, Sam called the E/N/T's office because he was getting nervous about choking and the doctor-on-call told him not to try to swallow anything (like his meds or foods); that he wasn't overly concerned; and to call the office on Monday to schedule an exam if the problem is still there. And, of course he said if Sam has trouble breathing to go to the ER.
This is weird and a bit upsetting because he had been doing so well. After his two doctor visits (one on Wednesday and one on Thursday) where he was thoroughly examined, he had some cream of wheat and was getting fluids down his throat. I'm not sure if this has happened because of the exams where the docs were examining his throat by putting their fingers into the back of his mouth or if something else is going on?
I keep thinking there must be a simple explanation. Usually that's what happens - it's some normal part of recovery or something like that and you have worried for nothing. Unfortunately, we have no frame of reference when it comes to the effects of radiation treatments on the throat.
Why does this stuff always happen on the weekend? It's enough to make you lose your mind. So, here we are again, having to try to find answers and exercising our faith muscles again.
We could use your prayers. Prayers for wisdom, strength, patience, calmness and faith.
So, Sam called the E/N/T's office because he was getting nervous about choking and the doctor-on-call told him not to try to swallow anything (like his meds or foods); that he wasn't overly concerned; and to call the office on Monday to schedule an exam if the problem is still there. And, of course he said if Sam has trouble breathing to go to the ER.
This is weird and a bit upsetting because he had been doing so well. After his two doctor visits (one on Wednesday and one on Thursday) where he was thoroughly examined, he had some cream of wheat and was getting fluids down his throat. I'm not sure if this has happened because of the exams where the docs were examining his throat by putting their fingers into the back of his mouth or if something else is going on?
I keep thinking there must be a simple explanation. Usually that's what happens - it's some normal part of recovery or something like that and you have worried for nothing. Unfortunately, we have no frame of reference when it comes to the effects of radiation treatments on the throat.
Why does this stuff always happen on the weekend? It's enough to make you lose your mind. So, here we are again, having to try to find answers and exercising our faith muscles again.
We could use your prayers. Prayers for wisdom, strength, patience, calmness and faith.
Wednesday, November 12, 2008
A difference of demeanor.
Does a doctor's demeanor make a difference? After today, I'm thinking maybe it does.
We arrived at Dr. Celin's office promptly at 8:50 a.m. this morning. He is Sam's Ear/Nose/Throat specialist and after the usual chart update, Dr. Celin told us almost the same thing that Drs. Chen and Osborn said yesterday, but somehow it was different.
I think it's his "bed-side" manner. More than once during the conversation he said that there is some agreement among physicians that having a PET/CT sooner than six months can give a false positive. And therefore, it is probably too early to determine the meaning of the "glucose uptake" of the cells. Like cancer cells, cells that are healing will also draw up glucose faster and so he feels it's too soon to know. In addition, because taking a biopsy can be hit or miss and because Sam will have to have general anesthesia due to the location of the tumor, he would like to re-examine Sam in three weeks and schedule a biopsy the following week. That way, he could always cancel the biopsy if it's unnecessary.
So, the result of today's visit is that we still don't know if the cancer is gone. But, we left the doctor's office feeling a little less concerned and I am having trouble explaining that other than I think I have more respect for Dr. Celin - gut feeling again, I guess.
Sam and I have decided to take the focus of our life off of "results" - waiting for results; hoping for a certain result; expecting doctors to produce certain results. Maybe that's just what happens through this kind of process, but the "end result" is that when you live waiting for results, you stop living. While it's kind of hard for Sam to "do" a lot, I think it will be beneficial for both of us to re-direct our thoughts to the things of which we have some control. Like perhaps our attitude.
The best attitude we can choose is to live like today is the last day we may have on earth rather than one more day closer to a result. We'll see how that goes... hopefully we will have that resolve for more than one day :)
We arrived at Dr. Celin's office promptly at 8:50 a.m. this morning. He is Sam's Ear/Nose/Throat specialist and after the usual chart update, Dr. Celin told us almost the same thing that Drs. Chen and Osborn said yesterday, but somehow it was different.
I think it's his "bed-side" manner. More than once during the conversation he said that there is some agreement among physicians that having a PET/CT sooner than six months can give a false positive. And therefore, it is probably too early to determine the meaning of the "glucose uptake" of the cells. Like cancer cells, cells that are healing will also draw up glucose faster and so he feels it's too soon to know. In addition, because taking a biopsy can be hit or miss and because Sam will have to have general anesthesia due to the location of the tumor, he would like to re-examine Sam in three weeks and schedule a biopsy the following week. That way, he could always cancel the biopsy if it's unnecessary.
So, the result of today's visit is that we still don't know if the cancer is gone. But, we left the doctor's office feeling a little less concerned and I am having trouble explaining that other than I think I have more respect for Dr. Celin - gut feeling again, I guess.
Sam and I have decided to take the focus of our life off of "results" - waiting for results; hoping for a certain result; expecting doctors to produce certain results. Maybe that's just what happens through this kind of process, but the "end result" is that when you live waiting for results, you stop living. While it's kind of hard for Sam to "do" a lot, I think it will be beneficial for both of us to re-direct our thoughts to the things of which we have some control. Like perhaps our attitude.
The best attitude we can choose is to live like today is the last day we may have on earth rather than one more day closer to a result. We'll see how that goes... hopefully we will have that resolve for more than one day :)
Tuesday, November 11, 2008
Inconclusive evidence
As you may be aware, Sam had an appointment with his radiologist and oncologist today to review the results of his most recent PET/CT scan. The answer is... we still don't have an answer.
There is still an appearance of a tumor at the base of Sam’s tongue but it is significantly reduced and they are not sure it is still cancerous.
The radiologist and oncologist can't really tell from the PET/CT scan exactly what is going on in the tissue because it can "light up" or metabolize for several reasons, including radiation inflammation, healing or scar tissue, and cancer, but only a biopsy will give definitive answers.
Sam has an appointment tomorrow morning with his Ear Nose & Throat (E/N/T) physician who will determine whether to do the biopsy. But, it is even possible that it’s too early to do the biopsy.
There is some positive news. His lymph nodes in his neck are back to normal size (they will continue to monitor them). The best news is that there is nothing registering in his chest scan so the cancer has not spread to his lungs. That’s a blessing for sure!
So, today’s visit is as we anticipated... and we are not alarmed; tomorrow we may have some additional information.
Prayer moves mountains and soften hearts.
There is still an appearance of a tumor at the base of Sam’s tongue but it is significantly reduced and they are not sure it is still cancerous.
The radiologist and oncologist can't really tell from the PET/CT scan exactly what is going on in the tissue because it can "light up" or metabolize for several reasons, including radiation inflammation, healing or scar tissue, and cancer, but only a biopsy will give definitive answers.
Sam has an appointment tomorrow morning with his Ear Nose & Throat (E/N/T) physician who will determine whether to do the biopsy. But, it is even possible that it’s too early to do the biopsy.
There is some positive news. His lymph nodes in his neck are back to normal size (they will continue to monitor them). The best news is that there is nothing registering in his chest scan so the cancer has not spread to his lungs. That’s a blessing for sure!
So, today’s visit is as we anticipated... and we are not alarmed; tomorrow we may have some additional information.
Prayer moves mountains and soften hearts.
Saturday, November 8, 2008
Mmmm... Cream of Wheat
While it was only 2 tablespoons of Cream of Wheat with a little milk and sweet cream, the best part for Sam is that he was able to swallow and keep it down. Now, that's progress. I don't remember the last time Sam took food by mouth... probably August 12th... that was the date of his second chemo and he had nausea for 3 weeks and after that, the pain from the radiation was so bad he couldn't swallow food any more.
The other positive aspect of this food trial is that the Cream of Wheat tasted like Cream of Wheat and that makes a big difference in his willingness to try other foods. Last week he tried eating Miso soup and that tasted horrible to him - which turned him off to trying other foods. But, if all goes well, he may try to do a taste test of some other foods tomorrow to see if his taste buds have come back.
As for our prayer needs, we are trying to keep Tuesday's appointment in proper perspective and we need to continue to rely on God's strength and trust Him for the outcome. I don't want to put too much hope in it being a final answer. It is possible that the scan was given too early to give us a complete answer or there may be some other scenario that we haven't anticipated so I'm being cautious about my expectations of the results. I think we are both relaxed about Tuesday and we are ready for whatever news awaits us.
Thank you for your continued prayers.
Monday, November 3, 2008
6 ounces of coffee
Can drinking six ounces of coffee be considered a milestone?
I think we can safely say that if you have had nothing except formula for months by tube - drinking six ounces of coffee would be considered a milestone and that's what Sam did today - he sipped six ounces of coffee and it even tasted like coffee. That must have seemed like heaven to him.
Tomorrow he is thinking of trying Miso soup! Small, but important, steps.
In two days he will have his PET/CT Scan (Nov. 6th) and in a week from today (Nov. 11th) we will have the results. Time seems to be moving so slowly - but then I think - it's been almost seven weeks since Sam finished his treatments. Yikes.
We are praying that the scan will be clear.
We will also be praying for our country.
I think we can safely say that if you have had nothing except formula for months by tube - drinking six ounces of coffee would be considered a milestone and that's what Sam did today - he sipped six ounces of coffee and it even tasted like coffee. That must have seemed like heaven to him.
Tomorrow he is thinking of trying Miso soup! Small, but important, steps.
In two days he will have his PET/CT Scan (Nov. 6th) and in a week from today (Nov. 11th) we will have the results. Time seems to be moving so slowly - but then I think - it's been almost seven weeks since Sam finished his treatments. Yikes.
We are praying that the scan will be clear.
We will also be praying for our country.
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