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Every day is different. That seems to be true for this recovery period. No day has been just like the prior one. Today is no exception.
My night time sleep continues to improve. I think most of this is due to medications, but I'm not complaining. However, for most of today I have felt fatigued. I've tried to lay down and take a nap but sleep just doesn't happen. My Serotonin levels must still be depleted.
Because of the fatigue I had my mom drive to get my allergy injection. After that she drove me to watch Sean's final football game of the season. Due to treatment and recovery this was the ONLY game I got to watch. They won 38-8 or something like that and I got to see Sean play and get involved in a number of tackles. Woo Hoo!
Though I didn't scream/yell at the game, I did a lot of clapping.
I can tell that parts of my throat are healing. In the past, every time I yawned my throat was very painful. Now, the pain is minimal. It's a small step but I'll take it.
Wednesday, September 30, 2009
Blessings
Things continue to improve daily though Jim is having trouble seeing this through the fog of his unhappiness. Yesterday he walked at the mall with his Mom and didn't seem to have issues with the car ride. He even drove his beloved truck, "Steve".
Last night he and I went to our first Head & Neck Cancer Support Group meeting. Each person told the story of what type of cancer they had, the type of treatment, how long ago it was, and usually shared something about one or more issues experienced. There were some horrible stories that really made me realize how lucky we are. I also realize how blessed we are that there are so many people that have had head or neck cancer and are so willing to help others. As one guy told me, he's been cancer free for years but he attends all the support group meetings because he just feels the need to give back. Others helped him and now its his turn to help.
Jim came out of the meeting with mixed feelings. Felt good to hear from others that have had this and are doing well now. Was nice to get some valuable tips. But the message that he is doing exceedingly well compared to how others were at 2 weeks after treatment and that he is being impatient and expecting too much from himself did not go over quite so well.
I'm working on a mental list of the things that we have to be thankful for related to Jim's cancer. Some of these items are:
1) his cancer was found right away; he was sent to a specialist immediately after going to his primary care physician (others had years of struggle before getting a correct diagnosis),
2) the cancer had not spread,
3) treatment began immediately (I'll risk getting near politics and say thank heaven for our US medical system and for our health insurance!),
4) Jim did relatively well during his treatment; no major complications nor illnesses
5) Jim's been able to swallow pills the entire time. This astounds others who have been through this treatment and has been a blessing for me too because it meant I did not have to grind pills to be taken through his feeding tube
6) Jim's been able to swallow water through all of this ... if he had not he might have had to go through therapy now to learn to swallow
7) Jim's ability to talk is much better than expected.
8) Jim did not lose weight during treatment. (granted, he lost weight after the biopsy and since treatment ended but there are so many stories of people losing 50+ pounds so we ARE blessed!)
9) I am thankful we are living here in Denver near Jim's Mom; it would have been very tough without her
10) we have such great support from family, friends, church, Boy Scouts, etc. And this situation gave us the opportunity to get to know some of them better
Actually there are many more blessings that could be listed. God is good!
Last night he and I went to our first Head & Neck Cancer Support Group meeting. Each person told the story of what type of cancer they had, the type of treatment, how long ago it was, and usually shared something about one or more issues experienced. There were some horrible stories that really made me realize how lucky we are. I also realize how blessed we are that there are so many people that have had head or neck cancer and are so willing to help others. As one guy told me, he's been cancer free for years but he attends all the support group meetings because he just feels the need to give back. Others helped him and now its his turn to help.
Jim came out of the meeting with mixed feelings. Felt good to hear from others that have had this and are doing well now. Was nice to get some valuable tips. But the message that he is doing exceedingly well compared to how others were at 2 weeks after treatment and that he is being impatient and expecting too much from himself did not go over quite so well.
I'm working on a mental list of the things that we have to be thankful for related to Jim's cancer. Some of these items are:
1) his cancer was found right away; he was sent to a specialist immediately after going to his primary care physician (others had years of struggle before getting a correct diagnosis),
2) the cancer had not spread,
3) treatment began immediately (I'll risk getting near politics and say thank heaven for our US medical system and for our health insurance!),
4) Jim did relatively well during his treatment; no major complications nor illnesses
5) Jim's been able to swallow pills the entire time. This astounds others who have been through this treatment and has been a blessing for me too because it meant I did not have to grind pills to be taken through his feeding tube
6) Jim's been able to swallow water through all of this ... if he had not he might have had to go through therapy now to learn to swallow
7) Jim's ability to talk is much better than expected.
8) Jim did not lose weight during treatment. (granted, he lost weight after the biopsy and since treatment ended but there are so many stories of people losing 50+ pounds so we ARE blessed!)
9) I am thankful we are living here in Denver near Jim's Mom; it would have been very tough without her
10) we have such great support from family, friends, church, Boy Scouts, etc. And this situation gave us the opportunity to get to know some of them better
Actually there are many more blessings that could be listed. God is good!
Tuesday, September 29, 2009
Recovery Day 15
Cathy made three smoothies for me this morning. I already polished off one and I'm working on the second one. So far they seem to be staying down. Praise the Lord!!
The visit with Dr Klancar yesterday didn't result in a whole lot of solutions for my stomach issues other than the thought that my throat/esophagus is misfiring and the more solid foods aren't going down to my stomach but are staying in the esophagus. I may end up taking a barium swallow test next week to rule this out. Dr Klancar did get a first hand observation that my stomach isn't working right. I had been pumping formula in for at least an hour prior to the visit. While she was in the exam room I vomited. I really tried hard to avoid it but I just couldn't hold it back this time.
Much of the stomach problems could be due to my inability to clear the mucus on the back of my throat. It is very difficult to do without triggering my excessively overactive gag reflex.
Dr Klancar did get me started on an anti-depressant drug and recommended more frequent use of the Ativan medication. I should start seeing results in about 4 days.
I slept better last night. I took 6mg of extended release Melatonin and 1 Restoril at bed time. Then at 1 am when I got up to use the toilet I took another Restoril. I can't say I slept solidly but I slept better and more than the last three nights.
I need to review some of the restrictions on the drugs I'm taking, but I'm hoping to to take my Titan out for a spin today. It has been weeks since it has even been started.
The visit with Dr Klancar yesterday didn't result in a whole lot of solutions for my stomach issues other than the thought that my throat/esophagus is misfiring and the more solid foods aren't going down to my stomach but are staying in the esophagus. I may end up taking a barium swallow test next week to rule this out. Dr Klancar did get a first hand observation that my stomach isn't working right. I had been pumping formula in for at least an hour prior to the visit. While she was in the exam room I vomited. I really tried hard to avoid it but I just couldn't hold it back this time.
Much of the stomach problems could be due to my inability to clear the mucus on the back of my throat. It is very difficult to do without triggering my excessively overactive gag reflex.
Dr Klancar did get me started on an anti-depressant drug and recommended more frequent use of the Ativan medication. I should start seeing results in about 4 days.
I slept better last night. I took 6mg of extended release Melatonin and 1 Restoril at bed time. Then at 1 am when I got up to use the toilet I took another Restoril. I can't say I slept solidly but I slept better and more than the last three nights.
I need to review some of the restrictions on the drugs I'm taking, but I'm hoping to to take my Titan out for a spin today. It has been weeks since it has even been started.
Monday, September 28, 2009
Rollercoaster
What a rollercoaster ride we are on! Well, I think it is more of a rollercoaster for the rest of us and something of a subway ride for Jim. The rest of us see improvements in him every day but he wants everything to be back to normal immediately and doesn't seem to appreciate/recognize these.
Yesterday we seemed to take a few steps back. I don't know what the deal is. He was feeling nausea again and since we'd removed the Sancuso patch (used for nausea) he took some Zofran. He felt better almost immediately and shortly thereafter headed to the mall to walk with his mom. Suddenly the issues with riding in a car were back and the ride was hell. (He had not had these issues since the ride to his last radiation treatment. He also had not had Zofran since he took it for about 3 days in August and didn't like it.) He felt horrible the rest of the evening and couldn't bear to use the feeding tube. (This then causes him to stress more about the weight he has lost since treatment ended.) So last night we put a new Sancuso patch on him with the goal of curbing the nausea. Today he's back to feeling pain in his stomach area that is relieved by lying down. Or is it nausea? Or bowel issues? He can't tell the difference which makes it very difficult to figure out how to help him.
He's really down and in his words "can't see the light a the end of the tunnel" despite reassurances from the experts that he WILL get through this. He's also lucky to have Scott (from our church's cancer support group) and Cindy (from the Head & Neck Support Group) as mentors who have been through this themselves and recovered. Having people like this who are willing to share and assist is such a blessing. I myself am considering attending a support group for caregivers or seeking some other sort of assistance; this was easier for me back when he was seeing doctors every day and answers seemed more obvious. The pressure on me to fix things can be quite a load.
I fully expect the doctor to prescribe an anti-depressant for him today. Hopefully she can also provide some answers about what's been going on lately. (e.g. is some of this withdrawl from the pain patch? He did go off of that Saturday. Is the Buspar the cause of his restlessness and inability to sleep? etc.
Thanks for all the prayers - please keep 'em coming!
Yesterday we seemed to take a few steps back. I don't know what the deal is. He was feeling nausea again and since we'd removed the Sancuso patch (used for nausea) he took some Zofran. He felt better almost immediately and shortly thereafter headed to the mall to walk with his mom. Suddenly the issues with riding in a car were back and the ride was hell. (He had not had these issues since the ride to his last radiation treatment. He also had not had Zofran since he took it for about 3 days in August and didn't like it.) He felt horrible the rest of the evening and couldn't bear to use the feeding tube. (This then causes him to stress more about the weight he has lost since treatment ended.) So last night we put a new Sancuso patch on him with the goal of curbing the nausea. Today he's back to feeling pain in his stomach area that is relieved by lying down. Or is it nausea? Or bowel issues? He can't tell the difference which makes it very difficult to figure out how to help him.
He's really down and in his words "can't see the light a the end of the tunnel" despite reassurances from the experts that he WILL get through this. He's also lucky to have Scott (from our church's cancer support group) and Cindy (from the Head & Neck Support Group) as mentors who have been through this themselves and recovered. Having people like this who are willing to share and assist is such a blessing. I myself am considering attending a support group for caregivers or seeking some other sort of assistance; this was easier for me back when he was seeing doctors every day and answers seemed more obvious. The pressure on me to fix things can be quite a load.
I fully expect the doctor to prescribe an anti-depressant for him today. Hopefully she can also provide some answers about what's been going on lately. (e.g. is some of this withdrawl from the pain patch? He did go off of that Saturday. Is the Buspar the cause of his restlessness and inability to sleep? etc.
Thanks for all the prayers - please keep 'em coming!
Saturday, September 26, 2009
Recovery Day 12
I had a very difficult night sleeping. One thing Cathy didn't include in her last post was that the loss of Serotonin affects my ability to sleep. Boy, don't I know that. I seem to have all this excess energy at night and sleep just doesn't happen. Sleep supplements are of only limited help.
Cathy experimented with some foods for me. One success was pumpkin pie without the spices and crust. It's juicy enough that I can swallow it OK. Plus, it doesn't taste too bad either. Way to go Cathy!!!
The last pain patch came off this morning. Hopefully the withdrawal effects won't be too bad.
I'm having trouble maintaining my weight. I can't get enough real food in me along with the formula.
It's a really nice day out so I'm going to help Cathy with some painting. But I'm dragging pretty bad due to the lack of sleep.
Cathy experimented with some foods for me. One success was pumpkin pie without the spices and crust. It's juicy enough that I can swallow it OK. Plus, it doesn't taste too bad either. Way to go Cathy!!!
The last pain patch came off this morning. Hopefully the withdrawal effects won't be too bad.
I'm having trouble maintaining my weight. I can't get enough real food in me along with the formula.
It's a really nice day out so I'm going to help Cathy with some painting. But I'm dragging pretty bad due to the lack of sleep.
Friday, September 25, 2009
Struggling with recovery
Yesterday we saw a Clinical Nurse Specialist who has extensive experience with cancer patients. She told us that what Jim is going through is called "Post-treatment Syndrome" and that the weeks following treatment tend to be the lowest point of this journey (we had no idea!) She explained that the human body was not designed to handle 7 weeks of chronic, unrelenting stress. So the levels of serotonin are depleted, leading to depression and inability to control emotions. Unfortunately this period tends to last longer for head & neck cancer patients than for those with other cancers due to the severity of the treatment and the fact that it affects all aspects of the patient's life (e.g. eating, drinking, speech, work, etc.) She contacted Jim's medical oncologist and recommended some medication that will help get Jim through this period. We'll get the prescription when we see the doctor on Monday.
Jim is really struggling. He is extraordinarily frustrated and discouraged. He is bored yet unable to focus on a task for long. And he tends to get very emotional - which is extremely distressful to him.
Speaking for myself and the boys, I'd say that the last 2 weeks have been the hardest since Jim's diagnosis. We want to celebrate that his treatments are over and that things are beginning to get better, yet there he is feeling more miserable than ever and not acting like himself.
We are still limiting visitors to close family and to those who understand or can cope with the what's going on here. However I am certain that Jim will soon welcome visitors and especially persons who will get him out of the house. He's very anxious to become more active and to DO SOMETHING.
Thanks so much for your prayers ... we're constantly pulling from the stash of prayers that have been put aside for us so we appreciate the frequent refills.
Jim is really struggling. He is extraordinarily frustrated and discouraged. He is bored yet unable to focus on a task for long. And he tends to get very emotional - which is extremely distressful to him.
Speaking for myself and the boys, I'd say that the last 2 weeks have been the hardest since Jim's diagnosis. We want to celebrate that his treatments are over and that things are beginning to get better, yet there he is feeling more miserable than ever and not acting like himself.
We are still limiting visitors to close family and to those who understand or can cope with the what's going on here. However I am certain that Jim will soon welcome visitors and especially persons who will get him out of the house. He's very anxious to become more active and to DO SOMETHING.
Thanks so much for your prayers ... we're constantly pulling from the stash of prayers that have been put aside for us so we appreciate the frequent refills.
Wednesday, September 23, 2009
Recovery Day 7
One of my pain patches expired last night and I didn't replace it since I'm trying to get down to zero. Unfortunately, a side affect of it expiring is insomnia. I was up almost all night trying to figure out what what was going on. I guess now that we are down at such a low dose the withdrawal affects are more noticeable. There is now just one more patch to go. The plan is to replace it when it expires and that will be the very last patch. Hopefully we can schedule things so the last patch expires in the morning and then I can have insomnia during the day and not at night.
The food I can eat by mouth is very limited. Cathy made some nice soft pancakes a couple nights ago and I could only eat half of one. Each bite had to be about the size of a pea and it took me a long time to chew and swallow it. I had to reheat it twice. I could use a lot of prayers in this area.
I was bored to tears yesterday so my mom took me out walking at the mall. It was awesome to get out. Hopefully I can do some more of that.
The change is weather is very difficult on me. I'm so cold all the time and it doesn't help that the outside low temperatures are in the 40's and the highs haven't been in the 70's. From what I understand the "feeling cold" is common for patients that have been through what I have. Part of it has to be the weight loss.
The food I can eat by mouth is very limited. Cathy made some nice soft pancakes a couple nights ago and I could only eat half of one. Each bite had to be about the size of a pea and it took me a long time to chew and swallow it. I had to reheat it twice. I could use a lot of prayers in this area.
I was bored to tears yesterday so my mom took me out walking at the mall. It was awesome to get out. Hopefully I can do some more of that.
The change is weather is very difficult on me. I'm so cold all the time and it doesn't help that the outside low temperatures are in the 40's and the highs haven't been in the 70's. From what I understand the "feeling cold" is common for patients that have been through what I have. Part of it has to be the weight loss.
Monday, September 21, 2009
Recovery Day 5
I met with both the chemo and radiation doctors today and things are looking good. The PICC line was removed (now I have to be extra careful to drink enough fluids!). I've been OK'd to drop the pain med dosage down each time a patch expires (they overlap and expire every 72 hours). Finally, I have been told what the requirements are for getting the feeding tube removed.
To remove the feeding tube I need to eat on my own for two weeks without using the tube and without losing any weight. Sounds easy, right? Wrong! Without my taste buds working and also given that I'm limited in what I can swallow (my throat does still hurt) it is going to be very challenging finding high nutrition foods to take the place of the formula. (drinking the formula does count but the stuff I'm using isn't very tasty)
One doctor said the taste buds could take as long as a year to come back. The other doctor said 2 to 3 weeks at the earliest. That's a big difference. Both doctors agreed that some of the taste buds may never come back.
The family is on drip patrol. Apparently the end of my nose was in the path of some of the radiation. I have no sensation when my nose is dripping. So everyone is reminding me when it's time to find a kleenex.
It's past time for my nap so I'm done for now.
To remove the feeding tube I need to eat on my own for two weeks without using the tube and without losing any weight. Sounds easy, right? Wrong! Without my taste buds working and also given that I'm limited in what I can swallow (my throat does still hurt) it is going to be very challenging finding high nutrition foods to take the place of the formula. (drinking the formula does count but the stuff I'm using isn't very tasty)
One doctor said the taste buds could take as long as a year to come back. The other doctor said 2 to 3 weeks at the earliest. That's a big difference. Both doctors agreed that some of the taste buds may never come back.
The family is on drip patrol. Apparently the end of my nose was in the path of some of the radiation. I have no sensation when my nose is dripping. So everyone is reminding me when it's time to find a kleenex.
It's past time for my nap so I'm done for now.
Saturday, September 19, 2009
Recovery Day 4
As Cathy stated previously, I'm very impatient to have this recovery over and done with. The 100 micrograms of pain killer is now down to 75. There is great disagreement - and a significant lack of information - on how to proceed. The next patch is due to be replaced this evening. I'm all for changing out the 50 microgram patch that is expiring with a 25, for a total of 50 micrograms. We'll be having an solid conversation with my Doctor on Monday about how we "should" do this. I hope the process involves days and not weeks. I am strictly forbidden from driving until I'm off the pain patches. :(
I tried a variety of foods today: chicken broth, pudding, applesauce, yogurt and canned peaches. My taste buds really haven't come back online yet but the chicken broth isn't too bad. I want to start eating regular foods ASAP so I can ditch the feeding tube or at least not have to rely on it. I'm quite a ways from making this goal.
I tried a variety of foods today: chicken broth, pudding, applesauce, yogurt and canned peaches. My taste buds really haven't come back online yet but the chicken broth isn't too bad. I want to start eating regular foods ASAP so I can ditch the feeding tube or at least not have to rely on it. I'm quite a ways from making this goal.
Friday, September 18, 2009
An outing
Today Jim went with me to put gasoline in the van and to Walmart to pick up some oil. Jim really wanted to get out of the house but in the end, Walmart was too much for him. Too many sights, sounds, people. It's overwhelming for someone who has been hanging out in a quiet bedroom mostly by himself.
He didn't get much sleep last night because of all the hacking and spitting he had to do. So now he's falling asleep mid-conversation. (I had the day off today so I managed to get a small nap. He likes the comfort of having me in the room with him even though I don't do anything to help with the phlegm issues.)
Yesterday I learned NOT to have him looks things up on the internet related to medications. I should have known better but I guess I wasn't thinking. Of course the people with good experiences don't post stories on the internet so what he read caused him even more stress and worry.
Despite the fact that Jim wants to move full-force ahead with recovery and is very upset about not having seen great improvements this week, we're going to be taking this slowly.
Wednesday, September 16, 2009
Recovery - Day 2
The nausea I'm feeling is significantly reduced. That's great! I suspect it will continue to go away the further I get from the last time chemotherapy was administered. Still, I managed to vomit around Noon. The only explanation I have at this time is that there must have been a large quantity of mucus built up in my throat and when I tried to expectorate it out the contents of my stomach decided to come too. That was very disappointing as I'm not able to push in as much food through the tube as I would like to since we're trying to reduce the amount of Regelan that is used. (Regelan encourages my stomach to move what is in my stomach to the next stage. Otherwise it tends to stay there and I get this nasty feeling of being full because everything is sticking around.)
I'm desperate to get off the tube feeding. I managed to eat a slice of canned peach at about 1pm My stomach didn't quite know what to make of it but it didn't reject it. For "dinner" I had two slices. I was able to taste the peach. Hopefully that means my taste buds are beginning to come back.
My ability to regulate my temperature is still messed up. I wanted to spend time with the rest of the family today but I just couldn't. The temperature difference between my bedroom (regulated temp and humidity) and the kitchen is a good eight to ten degrees. My body doesn't adapt fast enough for that. My throat clenches up and I start to gag with vomit being a possibility.
As Cathy posted earlier I am frustrated at my progress. I know that my progress is normal, but still, I want this whole thing over and done with. I'll do whatever I can to accelerate the recovery process. All the drugs are making me a little wacky and way more emotional than normal.
Cathy continues to be a wonderful caregiver. I don't know what I would do without her.
I'm desperate to get off the tube feeding. I managed to eat a slice of canned peach at about 1pm My stomach didn't quite know what to make of it but it didn't reject it. For "dinner" I had two slices. I was able to taste the peach. Hopefully that means my taste buds are beginning to come back.
My ability to regulate my temperature is still messed up. I wanted to spend time with the rest of the family today but I just couldn't. The temperature difference between my bedroom (regulated temp and humidity) and the kitchen is a good eight to ten degrees. My body doesn't adapt fast enough for that. My throat clenches up and I start to gag with vomit being a possibility.
As Cathy posted earlier I am frustrated at my progress. I know that my progress is normal, but still, I want this whole thing over and done with. I'll do whatever I can to accelerate the recovery process. All the drugs are making me a little wacky and way more emotional than normal.
Cathy continues to be a wonderful caregiver. I don't know what I would do without her.
Frustrated
Jim's EXTREMELY frustrated with his status and is so very anxious to get things back to normal. Realistically it is too early to be looking for improvement; that ought to start in a week or so. This is not what he wants to hear. He's very determined so expect him to be pushing the limits soon.
He's been operating on very little sleep ... something that would mess with any of us. Add that to all the meds and pain killers and it isn't pleasant. He did get more sleep last night so the plan is try the same sleep aid again tonight.
Thanks to all for the prayers (keep 'em coming) and for the good wishes and food and rides, etc. You're great!
He's been operating on very little sleep ... something that would mess with any of us. Add that to all the meds and pain killers and it isn't pleasant. He did get more sleep last night so the plan is try the same sleep aid again tonight.
Thanks to all for the prayers (keep 'em coming) and for the good wishes and food and rides, etc. You're great!
Monday, September 14, 2009
Completed 35 radiation treatments!
The last radiation treatment was this morning. Jim was visibly different afterwards; a great load was taken from his shoulders.
We are told to expect improvements to begin after about a week. Jim is very anxious to get off of the pain medication (he doesn't like the way they make him feel nor the strange thoughts they cause him to have). The doctor said he can start the decrease in about a week. He can get rid of the PICC line (for IV fluids) as soon as he can drink enough water by mouth. And he can say good-bye to the feeding tube as soon as he can eat enough solid food. These things will take time.
We are both absolutely pooped after today's appointments. I'm sure that lack of sleep the last few nights has greatly contributed to this. I am hoping that he'll begin to sleep better now that all of the treatments are complete. That is, as long as he doesn't start worrying again about what this next week will bring.
Now I've got to go close my eyes for a few minutes of rest.
We are told to expect improvements to begin after about a week. Jim is very anxious to get off of the pain medication (he doesn't like the way they make him feel nor the strange thoughts they cause him to have). The doctor said he can start the decrease in about a week. He can get rid of the PICC line (for IV fluids) as soon as he can drink enough water by mouth. And he can say good-bye to the feeding tube as soon as he can eat enough solid food. These things will take time.
We are both absolutely pooped after today's appointments. I'm sure that lack of sleep the last few nights has greatly contributed to this. I am hoping that he'll begin to sleep better now that all of the treatments are complete. That is, as long as he doesn't start worrying again about what this next week will bring.
Now I've got to go close my eyes for a few minutes of rest.
Treatment Day 35 - Finally!
The day is finally here and I'm a basket case. Will my stomach hold up for the drive? Will my perfect record of not vomitting on the treatment table hold?
I so want this to be over with. Temerapature control is still a problem. I'm wearing a winter ski hat most of the time. I blend in at the radiation clinic but look like a bank robber anywhere else.
We'll meet with the Chemo folks after the radiation treatment so they can clean/replace the dressing on the PICC line and provide any other bits of recovery advice. We'll probably have to set up future appointments at that time also.
I met with my cancer mentor and his wife yesterday. They provided a lot of encouragement and reassurance. Plus Kelly is a nice guy.
I so want this to be over with. Temerapature control is still a problem. I'm wearing a winter ski hat most of the time. I blend in at the radiation clinic but look like a bank robber anywhere else.
We'll meet with the Chemo folks after the radiation treatment so they can clean/replace the dressing on the PICC line and provide any other bits of recovery advice. We'll probably have to set up future appointments at that time also.
I met with my cancer mentor and his wife yesterday. They provided a lot of encouragement and reassurance. Plus Kelly is a nice guy.
Sunday, September 13, 2009
We're baaaack
Jim was released yesterday afternoon. We're now focused on getting through today and the last radiation treatment tomorrow (Monday) morning.
Saturday, September 12, 2009
Zzzzz ....
Jim apparently saved his wakefulness for night time. We shut the lights out just after 10pm but he was up again nearly every hour after that. Around 3:30 or so he was bored. (Not me, I wanted to sleep!)
Several important things to mention: Tuesday was the last chemo treatment. Monday is the final radiation treatment. I kinda hope they keep Jim here at the hospital till after that last treatment so he doesn't have to endure the drive here that morning.
Gotta go, he wants to go for a little walk.
Several important things to mention: Tuesday was the last chemo treatment. Monday is the final radiation treatment. I kinda hope they keep Jim here at the hospital till after that last treatment so he doesn't have to endure the drive here that morning.
Gotta go, he wants to go for a little walk.
Friday, September 11, 2009
Friday night
Sitting here waiting for the nurse to bring Jim's 9pm meds. He woke briefly, found a white-noise generator online, started it running, then waited for the nurse ... but fell back asleep. He's been doing a lot of sleeping today. That is, as much sleep as hospitals let you do. He's becoming quite good at cooperating with the nurses and frequently falling immediately back to sleep as soon as they finish taking his vitals or giving him meds or whatever it is they wake him to do.
They seem to have gotten the nausea under control as there's been no issues with it while I've been here today (since about 11am.) They also put him back on formula via the tube (they originally would not allow any "food" as they wanted to do some tests first, so this is the first food he's had since arriving around 5:30 last night.)
Poor Jeanette (Jim's mom) slept on a really lousy rollaway bed here last night. It had a bar across it at about where a person's chest hits the mattress. The mattress was kind enough to fold itself on either side of the bar so you could get maximum contact with the bar. However I have been blessed with the inheritance of a chair-that-becomes-a-bed complements of an exiting patient.
Jim's up again; guess it is time to chase down those 9pm meds (it's 9:30 now) before he falls asleep again.
BTW, Sean's feeling much better. Jeanette is sleeping at the house tonight. She's awesome.
Feels good to have a few less worries tonight.
They seem to have gotten the nausea under control as there's been no issues with it while I've been here today (since about 11am.) They also put him back on formula via the tube (they originally would not allow any "food" as they wanted to do some tests first, so this is the first food he's had since arriving around 5:30 last night.)
Poor Jeanette (Jim's mom) slept on a really lousy rollaway bed here last night. It had a bar across it at about where a person's chest hits the mattress. The mattress was kind enough to fold itself on either side of the bar so you could get maximum contact with the bar. However I have been blessed with the inheritance of a chair-that-becomes-a-bed complements of an exiting patient.
Jim's up again; guess it is time to chase down those 9pm meds (it's 9:30 now) before he falls asleep again.
BTW, Sean's feeling much better. Jeanette is sleeping at the house tonight. She's awesome.
Feels good to have a few less worries tonight.
Thursday, September 10, 2009
In the hospital
Jim's in the hospital tonight. He hasn't been sleeping and has nausea and vomiting issues. There's also incredible anxiety about the remaining treatments and the week immediately following them. This is really tough stuff. I've been told its the most difficult treatment in the radiation oncology office.
Unfortunately Sean and Patrick have been ill this week. Jim's mom took Sean to the doc this afternoon and found that Sean has strep.
I feel INCREDIBLY pulled apart today as I wanted to be with both Jim & Sean. But Jim's mom is staying with him tonight and I know he's in good hands. Sean is very understanding but he's still a kid who is sick and wants his mom. At least this way both Jim and Sean get some mothering. I sure hope that I can let go and get some good sleep so that I'll be of use after this.
Only two treatments left ... then after 1.5-2 weeks he's supposed to start recovering.
Deep breath ...
Unfortunately Sean and Patrick have been ill this week. Jim's mom took Sean to the doc this afternoon and found that Sean has strep.
I feel INCREDIBLY pulled apart today as I wanted to be with both Jim & Sean. But Jim's mom is staying with him tonight and I know he's in good hands. Sean is very understanding but he's still a kid who is sick and wants his mom. At least this way both Jim and Sean get some mothering. I sure hope that I can let go and get some good sleep so that I'll be of use after this.
Only two treatments left ... then after 1.5-2 weeks he's supposed to start recovering.
Deep breath ...
Saturday, September 5, 2009
3-day weekend
Oops ... major slip ... I failed to say that Jim's spirits seemed to be better yesterday than they were on Thursday. And today's not bad either. I think we almost got Jim talked into going outside to sit on the patio this afternoon. Or maybe he was just being agreeable because it was easier than not. I'm a bit worried about him sitting alone indoors in a darkened room all day long. Seems to me it would depress anyone. I've tried to talk him into reading or listening to music or watching a movie but he hasn't been interested. I try talking to him but that doesn't work well for either of us for long. He tried joining us in the main part of the house today but he can't seem to handle all the voices and noises and activity so he went back upstairs soon after.
Our priest Fr. Ken came over to chat with Jim last night and brought him a Mother Theresa meditation. I was thinking of having a number of us read and record it for him to play back. Now if I can just get around to doing that ...
Today Jim helped me to pay bills. This is normally his job and as he has much of it automated it's not as easy as me just writing some checks. His mind was working pretty well for this task but his stomach wasn't exactly cooperating so it took a bit longer than expected. However I was sooooo thankful he could do this.
Now whereas most of us are happy for a 3-day weekend, Jim has mixed feelings. Because Monday is a holiday he doesn't have radiation and so will have to go one day into the following week in order to get in his last 5 full treatments. He would MUCH prefer to get it all over with on the 11th. Yesterday he tried to bribe the doctor into shortening his number of treatments but the doc would have none of it. He said that they know what treatment works and they don't dare do less or the cancer might not be destroyed.
Sorry that you're missing out on gory details of how things are going. If he felt up to it I know Jim would have plenty of gross things to tell you about. But instead you're stuck with me and will have to wait for him to recover some before he starts to share.
Our priest Fr. Ken came over to chat with Jim last night and brought him a Mother Theresa meditation. I was thinking of having a number of us read and record it for him to play back. Now if I can just get around to doing that ...
Today Jim helped me to pay bills. This is normally his job and as he has much of it automated it's not as easy as me just writing some checks. His mind was working pretty well for this task but his stomach wasn't exactly cooperating so it took a bit longer than expected. However I was sooooo thankful he could do this.
Now whereas most of us are happy for a 3-day weekend, Jim has mixed feelings. Because Monday is a holiday he doesn't have radiation and so will have to go one day into the following week in order to get in his last 5 full treatments. He would MUCH prefer to get it all over with on the 11th. Yesterday he tried to bribe the doctor into shortening his number of treatments but the doc would have none of it. He said that they know what treatment works and they don't dare do less or the cancer might not be destroyed.
Sorry that you're missing out on gory details of how things are going. If he felt up to it I know Jim would have plenty of gross things to tell you about. But instead you're stuck with me and will have to wait for him to recover some before he starts to share.
Friday, September 4, 2009
Week 6 - OVER! - 5 treatment days remain
I don't feel much like posting but I'm sure people want to know how it is going.
It was a really tough week. Jim has been feeling very discouraged and wondering how he would ever make it through the remainder of the treatments. He says that prior weeks went fairly quickly but this week has been never-ending. He's not doing much of anything anymore, just hanging out in the bedroom in the recliner or the bed, shuffling back and forth to the bathroom, and going to the hospital daily for treatments. He's not interested in the internet, email, nor even Club Titan. Those who know him know that this is NOT like Jim at all. I'm anxious to have him back.
The drive to and from treatment is still extremely difficult but Jim is finding ways to cope with it. Driving him is quite a challenge because one must avoid bumps in the road, start and stop smoothly, etc.
Jim's throat is hurting more and his neck is looking quite burned, the skin broken (and as he says "crispy".) However, on a good note, I believe that he is doing VERY well with swallowing; the doctors are quite pleased that he is sipping so much water. And he still has a bit of voice though he uses it very sparingly. I end up doing a lot of talking for him. (I expect he hopes I don't get too used to that!)
I expect to be spending most all my time taking care of Jim next week (with the help of his mom). I've warned people at work that I will have very little availability but that this is temporary.
The hydration via IV here at home is going well. However the last 2 nights he's had some issues with regulating his temperature; he gets extraordinarily cold even if the room is not cold. I suspect it is related to the IV, if we lessen the flow he improves. (Or maybe it is just that we pile on the blankets.)
Jim is not able to handle loud noises well and also doesn't do well with long periods where he must remain alert (30 minutes is "pushing it".) And since he cannot afford to become ill, we are not having kids in the house (other than our own of course) and not encouraging visitors.
Greeting cards are definitely welcome ... we read them to him and then hang them up so they are visible.
One day at a time ...
It was a really tough week. Jim has been feeling very discouraged and wondering how he would ever make it through the remainder of the treatments. He says that prior weeks went fairly quickly but this week has been never-ending. He's not doing much of anything anymore, just hanging out in the bedroom in the recliner or the bed, shuffling back and forth to the bathroom, and going to the hospital daily for treatments. He's not interested in the internet, email, nor even Club Titan. Those who know him know that this is NOT like Jim at all. I'm anxious to have him back.
The drive to and from treatment is still extremely difficult but Jim is finding ways to cope with it. Driving him is quite a challenge because one must avoid bumps in the road, start and stop smoothly, etc.
Jim's throat is hurting more and his neck is looking quite burned, the skin broken (and as he says "crispy".) However, on a good note, I believe that he is doing VERY well with swallowing; the doctors are quite pleased that he is sipping so much water. And he still has a bit of voice though he uses it very sparingly. I end up doing a lot of talking for him. (I expect he hopes I don't get too used to that!)
I expect to be spending most all my time taking care of Jim next week (with the help of his mom). I've warned people at work that I will have very little availability but that this is temporary.
The hydration via IV here at home is going well. However the last 2 nights he's had some issues with regulating his temperature; he gets extraordinarily cold even if the room is not cold. I suspect it is related to the IV, if we lessen the flow he improves. (Or maybe it is just that we pile on the blankets.)
Jim is not able to handle loud noises well and also doesn't do well with long periods where he must remain alert (30 minutes is "pushing it".) And since he cannot afford to become ill, we are not having kids in the house (other than our own of course) and not encouraging visitors.
Greeting cards are definitely welcome ... we read them to him and then hang them up so they are visible.
One day at a time ...
Wednesday, September 2, 2009
Week #6 day 3
It's getting tough mentally. Ever hear of the Footprints poem? Well I'm picturing that single set of footprints in the sand because God's surely carrying Jim right now. I know he's got the strength to get through this but today its been hard for him to see that.
We haven't much time for emails these days but we are reading them. Thanks for your support & prayers.
-Cathy
We haven't much time for emails these days but we are reading them. Thanks for your support & prayers.
-Cathy
Tuesday, September 1, 2009
Week #6 - end of day 2
The decision was made yesterday ... no surgery to replace the feeding tube. Jim is going to tough it out and get through this with the tube as it is. He's been doing well - really diligent about getting his nutrition whether he wants to "eat" or not. (It's tough to force upon him when I know he doesn't want it but we both know its necessary.) We're also trying to be better about taking meds regularly and consistently. He's on at least 7 different meds now. I'm in charge of them and of writing down everything (feeding times & amounts, medicine times & amounts, bowel status, side-effects, deciding when to add other medications, etc.) We're also doing the IV hydration twice a day now. It is extra work but it is also a relief to feel more sure that he's getting the hydration he needs.
It appears that for the remainder of treatment either Jim's mom Jeanette or I will be going with him rather than recruiting drivers (though we still might try out a ride in a Cadillac.) We've reached the point that things are changing quickly and we get new prescriptions, instructions, information, & advice daily. Jim is speaking little so he sometimes needs a translater or someone to ask questions for him and to take notes. Also he gets a bit hazy/confused due to all the meds in his system. I'm trying to keep Jeanette up-to-date on most everything so she can fill in for me as needed. It greatly helps my work situation when I can spend a day here at home.
Yesterday when it was time to leave for the hospital I was scrambling around at the last minute removing seats from the van and making up a "bed" so Jim could lie flat. Something had set him off & he didn't think he could handle the drive, but he managed to do it lying down. However he did sit up for the ride home AND he rode successfully with his mom today. I wouldn't say he was comfortable either time but he seemed to do better than last week.
His chemo "high" wasn't as spectacular last night but it did keep him up much of the night. He was very wakeful and about as talkative as he can get these days.
It is getting very difficult for Jim to swallow but he's valiantly continuing to sip on a water bottle as often as he can. The skin on his neck is burned red, breaking down, and terribly painful. Yesterday we switched from applying a special radiation cream to using sheets of a "foam" that is similar to craft foam sheets with a sticky side. You peel off the backing and apply the foam to the burned area. Of course as the nurse said "this doesn't work very well in the neck area because it won't stay on". Today Jim apparently told the nurse that I'm good with things like that so he brought me the stuff to cut & apply. I did some creative scissoring and am now hoping it will stay on till tomorrow.
I am encouraged that he still occasionally tries out his sense of humor. Like yesterday in the chemo room when he stuck his fingers in his ears and made faces at the nurse & I. Strangely enough, these days this sort of thing is quite comforting to me. :)
Next week they expect Jim's white blood cell count to decrease, so he'll be getting a shot of something to improve that and to get him through the following week.
As usual, we SURE appreciate your prayers!
It appears that for the remainder of treatment either Jim's mom Jeanette or I will be going with him rather than recruiting drivers (though we still might try out a ride in a Cadillac.) We've reached the point that things are changing quickly and we get new prescriptions, instructions, information, & advice daily. Jim is speaking little so he sometimes needs a translater or someone to ask questions for him and to take notes. Also he gets a bit hazy/confused due to all the meds in his system. I'm trying to keep Jeanette up-to-date on most everything so she can fill in for me as needed. It greatly helps my work situation when I can spend a day here at home.
Yesterday when it was time to leave for the hospital I was scrambling around at the last minute removing seats from the van and making up a "bed" so Jim could lie flat. Something had set him off & he didn't think he could handle the drive, but he managed to do it lying down. However he did sit up for the ride home AND he rode successfully with his mom today. I wouldn't say he was comfortable either time but he seemed to do better than last week.
His chemo "high" wasn't as spectacular last night but it did keep him up much of the night. He was very wakeful and about as talkative as he can get these days.
It is getting very difficult for Jim to swallow but he's valiantly continuing to sip on a water bottle as often as he can. The skin on his neck is burned red, breaking down, and terribly painful. Yesterday we switched from applying a special radiation cream to using sheets of a "foam" that is similar to craft foam sheets with a sticky side. You peel off the backing and apply the foam to the burned area. Of course as the nurse said "this doesn't work very well in the neck area because it won't stay on". Today Jim apparently told the nurse that I'm good with things like that so he brought me the stuff to cut & apply. I did some creative scissoring and am now hoping it will stay on till tomorrow.
I am encouraged that he still occasionally tries out his sense of humor. Like yesterday in the chemo room when he stuck his fingers in his ears and made faces at the nurse & I. Strangely enough, these days this sort of thing is quite comforting to me. :)
Next week they expect Jim's white blood cell count to decrease, so he'll be getting a shot of something to improve that and to get him through the following week.
As usual, we SURE appreciate your prayers!
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