STRESS
I am a little bit stressed.
While I handle stress well, it does take it's toll.
It's ironic because I handle both stress and performance nerves the same way. I allow it to happen AFTER.
The difference between stress and performance nerves is, performing is over much quicker. Stress in life can maintain for long periods of time.
So it's no surprise to me that the weight I gained during his 18 day stay in the hospital ( 7 lbs.) is now coming off.... with little to no effort.
The flaking of my scalp and the general condition of my skin is horrible.
My allergies have suddenyl gotten worse.
My sleep patterns are just starting to go back to normal
My eyes run and water all the time.... with or without contacts.
And why? Because I allowed myself to let the stress go and this is how my body reacts. Now you may think this is odd. And it is, but when I don't release it - it's ten times worse than this - and then it lasts for a really long time. This bout will be over in a few days.
HURTS
These are a little bit harder to heal.
Jon is hurting. He wants to get up and do. And he can't. At least not everything all at once.
I made a task list for him. He is working through it, but tires so very easily.
His meds make him tired. His treatments make him tired. His electro balances are making him tired as they fluctuate.
And all that aside - his friends - largely women - aren't calling with as much frequency. Every day he says around 9-10PM,
"Another day, no calls. "
It breaks my heart a little. THough he's not really a phone person, he needs to feel loved. By more than just me. Not that it's not enough from me, but he is a little bit of local celeb and it feels a little bit like abandonment. If you will recall from last summer - he has abandonment issues anyway so this is not a good thing.
Yes in a stupid way - grow up already. But during a time of illness, it's hurting him. Partially because the young ones - I refer to them as children - dion't know how to react to him so they just don't.
Then the woman-formerly-known-as-the-whore promised to call and didn't. Another crack in the hull.
I am setting up some gatherings with friends to make things be about him a bit. He is well loved, but going through a dry spell.
And this too will pass.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Grey skies are gonna clear up
yeah yeah yeah - I know I know
Put on a happy face.
Actually - for the first time in months - I probably am. I am the most relaxed since the diagnosis. I am the most calm that i have been.
I am busy - but constructively so.
The diagnosis is this. No more chemo, 2 more weeks of radiation and possibly surgery to remove the nodes if they don't continue to shrink on their own.
His voice is returning bit by bit. He's eating, he's drinking and the energy is slowly but surely making it's way back. Slowly oh so slowly.
More to the point, he's in a better mood and a better frame of mind. Which means WE are doing better. Not completely not yet - but the effort is there. I see it, I sense it. I know it.
We had a lovely visit with the whore. Whom I will from not on NOT be calling that anymore. I will have to find a new nickname for her. she's not so bad. not so good either. But she seems to have settled herself on what she wants out of this and it's minimal. Friendship to be sure, but not the every day in your face kind.
She will email, they will talk occasionally. But she made it clear without grandstanding that her life is now all about her, the man she chose over mine and her kids. I couldn't have asked for anything more. She also didn't say it for my benefit at all. It was part of conversation where she was explaining that her vacation was to be only family not friends of the kdis etc. She just wanted it to be her and the man and the kids and that was it.
No hidden agenda this time. She actaully hugged me upon leaving and told me that I was doing a great job with him and that clearly this was meant to be.
I won't tell you that I am perfectly OK now. But We all turned a big corner that day. I no longer wish her gone or dead. I wish her and her family well.
She no longer resents me. We get on OK so if we run into each other again - it won't be an issue.
Ironically, the more often I see her, the less pretty she becomes. I always thought that was the opposite.... the more you see into your competition.... how does that go???
Anyway - it's not that she isn't pretty, it's more that she is no longer a factor, that is most important.
What made that visit so good, is that we really communicated about her BEFORE she got there. And it wasn't forced and it bad or angry. We just talked about how I feel when it appears to be hidden and how he feels when he deems it necessary to hide it.
What it amounts to ( which I should have known) is that he wasn't quite done in his heart. That's OK - he's not enitrely done with any woman he's ever had a relatinoship with so this one is no surprise either. I don't have a problem with that - in many ways that is a part of all of us.
We are moving forward with the remaining parts of his treatments. Things are looking good and we are working towards getting the music business up and running.
I am gearing us into yoga slowly, I am gearing us into natural eating and holistic healing as well. Just integrating into our lives in bits and pieces will go a long way.
I am forcing a medical proxy as well as wills from a practical standpoint.
I am going to slowly get the house back to whole while starting to look for a bigger one....eventually that will be the plan.
Things are looking better. Much better.
Put on a happy face.
Actually - for the first time in months - I probably am. I am the most relaxed since the diagnosis. I am the most calm that i have been.
I am busy - but constructively so.
The diagnosis is this. No more chemo, 2 more weeks of radiation and possibly surgery to remove the nodes if they don't continue to shrink on their own.
His voice is returning bit by bit. He's eating, he's drinking and the energy is slowly but surely making it's way back. Slowly oh so slowly.
More to the point, he's in a better mood and a better frame of mind. Which means WE are doing better. Not completely not yet - but the effort is there. I see it, I sense it. I know it.
We had a lovely visit with the whore. Whom I will from not on NOT be calling that anymore. I will have to find a new nickname for her. she's not so bad. not so good either. But she seems to have settled herself on what she wants out of this and it's minimal. Friendship to be sure, but not the every day in your face kind.
She will email, they will talk occasionally. But she made it clear without grandstanding that her life is now all about her, the man she chose over mine and her kids. I couldn't have asked for anything more. She also didn't say it for my benefit at all. It was part of conversation where she was explaining that her vacation was to be only family not friends of the kdis etc. She just wanted it to be her and the man and the kids and that was it.
No hidden agenda this time. She actaully hugged me upon leaving and told me that I was doing a great job with him and that clearly this was meant to be.
I won't tell you that I am perfectly OK now. But We all turned a big corner that day. I no longer wish her gone or dead. I wish her and her family well.
She no longer resents me. We get on OK so if we run into each other again - it won't be an issue.
Ironically, the more often I see her, the less pretty she becomes. I always thought that was the opposite.... the more you see into your competition.... how does that go???
Anyway - it's not that she isn't pretty, it's more that she is no longer a factor, that is most important.
What made that visit so good, is that we really communicated about her BEFORE she got there. And it wasn't forced and it bad or angry. We just talked about how I feel when it appears to be hidden and how he feels when he deems it necessary to hide it.
What it amounts to ( which I should have known) is that he wasn't quite done in his heart. That's OK - he's not enitrely done with any woman he's ever had a relatinoship with so this one is no surprise either. I don't have a problem with that - in many ways that is a part of all of us.
We are moving forward with the remaining parts of his treatments. Things are looking good and we are working towards getting the music business up and running.
I am gearing us into yoga slowly, I am gearing us into natural eating and holistic healing as well. Just integrating into our lives in bits and pieces will go a long way.
I am forcing a medical proxy as well as wills from a practical standpoint.
I am going to slowly get the house back to whole while starting to look for a bigger one....eventually that will be the plan.
Things are looking better. Much better.
Sunday, July 27, 2008
Avoid Cancer
Folks, I don't know how else to say it.... just avoid cancer.
There is no cure that is better than the disease itself. Oh to be sure, chemo will do it some of the time, but in the end, the chemo causes it's own issues within the body and you pay for those both at the time and thereafter becayse, after all, chemo IS cumulative.
Meaning - over the life of the treatment protocol assigned, each time you have a chemo treatment, it will be a little bit worse than the last time. MAybe the first one is just tiring and a wee bit of nausea...the second one, a bit more. And so on and so on.....
Nutrition is very important during this. The patient WILL NOT WANT TO EAT.
Please do not let this deter you - forge on and feed them pretty much whatever they can tolerate. But make them eat. And please, I beg of you DO NOT OVER HYDRATE. Hydration is important. VERY. But too much? Not good.
Over hydration without proper nutrition, hell... ANY nutrition, will land you in an 18 day minimum hospital stay with IV Sodium drips, potassium pills and charting your own input and output over the course of your days.
It means your kidneys will not work properly.
All this AFTER a stay in ICU under heavy sedation and a ventilator does not make for a happy patient. Or family or caretaker.
So smokers - quit. Sun goddesses - GO INSIDE! Drinkers - cut back - substance abusers - GET HELP.
But by all means - do what you have to in order to avoid this disease!
There is no cure that is better than the disease itself. Oh to be sure, chemo will do it some of the time, but in the end, the chemo causes it's own issues within the body and you pay for those both at the time and thereafter becayse, after all, chemo IS cumulative.
Meaning - over the life of the treatment protocol assigned, each time you have a chemo treatment, it will be a little bit worse than the last time. MAybe the first one is just tiring and a wee bit of nausea...the second one, a bit more. And so on and so on.....
Nutrition is very important during this. The patient WILL NOT WANT TO EAT.
Please do not let this deter you - forge on and feed them pretty much whatever they can tolerate. But make them eat. And please, I beg of you DO NOT OVER HYDRATE. Hydration is important. VERY. But too much? Not good.
Over hydration without proper nutrition, hell... ANY nutrition, will land you in an 18 day minimum hospital stay with IV Sodium drips, potassium pills and charting your own input and output over the course of your days.
It means your kidneys will not work properly.
All this AFTER a stay in ICU under heavy sedation and a ventilator does not make for a happy patient. Or family or caretaker.
So smokers - quit. Sun goddesses - GO INSIDE! Drinkers - cut back - substance abusers - GET HELP.
But by all means - do what you have to in order to avoid this disease!
Sunday, July 20, 2008
Switzerland
So since we last spoke - rather - read - 11 days ago my life has gotten pretty interesting.
I have renamed myself "Switzerland" or you can call me Heidi - take your pick.
I want to remind you of a post I submitted back in February about Mothers and Sons. It's fairly self explanatory. But little had changed in the forthcoming months.
Until now. The past 15 days have been good for his mom and I on a medical front. We had been largely in agreement on treatment when my best friend was unable to makke those decisions. Much of the time I was authorized by her to make them without her after awhile as she began to trust me more. It was really encouraging.
Until Day 4-5. He started behaving in a strange and unpredictable fashion after being woken from the 2.5 day heavily sedated sleep. Being there and being privy to it in the first person rattled me immeasurably but I am quite good in a medical crisis that is not my own, and sought out his nurses and got doctors on the floor fairly quickly.
She did not return my calls as promptly as I would have preferred and I was not able at that time, to make decisions for him and he was not capable of doinig it himself.
So I started dialoguing with her on days 5-NOW and the short version is this: Medically we will most likely agree on care. Socially/emotionally/spiritually/psychologically - you are looking at us in agreement about 25% of the time.
Three units later, countless docs - he finally gave the most recent doc, who has been the longest so far at 5 days, releases to speak with me about everything and anything they need and vice versa. I see him for 1 hour sessions 2 times a day. The rest of the time, he is resting and getting better and stronger as we research a new treatment protocol for the chemo.
What I have discovered is, because I am not her favorite person and she has undisclosed issues with me, arguing with her is not a good plan. From the onset, I knew this to be true. So what I have done was converted myself into a sounding board for her when I disagree. I just listen and ask her questions and let her think it all the way to a logical conclusion and then I drop it. When I agree however I vociferously ask lots of questions, propose action plans, get her input on the hows whens and whys and divide up the task list with her at her pleasure to get it done.
She's an unbelievably bright and intellignet person so the last thing I want to do is to alienate her by showing anything that looked like superiority. The bottom line was - I Believed 1-2 days in this particular environment would be beneficial. I believe that 10-14 days would have caused backwards movement in him.
She commented that she thinks I know him better than she does. I tap danced out of that by saying maybe in 1 or 2 things but she is his mother and she has 52 years experience to my 11.
The Point is, When she is barking up the wrong tree, I don't tell her so. I just listen and let her talk it out to a logicial conclusion. When She's right I am her single biggest advocate.
One particular battle we had was on medication. He does not want anything beyond the medical necessity meds ( heparin) and the fluids( .09 Saline and Potassium). There is nothing else medically necessary so they needed to stop pushing it.
The short tail on that is, she felt it was better for him, he didn't and was capable of saying no and was adamant about it, so as far as I was concerned, that was a done deal.
What I did here though was listen, read the websites decribing the drug, interactions and side effects. We agreed that this drug was a poor idea as it was clear they didn't read into the rest of his chart. However she then proceeded to investigate ANOTHER drug that would offer the same relief with different side effects. I just listened and said nothing.
I am neutral.
I am Swiss.
Just call me Heidi!
I have renamed myself "Switzerland" or you can call me Heidi - take your pick.
I want to remind you of a post I submitted back in February about Mothers and Sons. It's fairly self explanatory. But little had changed in the forthcoming months.
Until now. The past 15 days have been good for his mom and I on a medical front. We had been largely in agreement on treatment when my best friend was unable to makke those decisions. Much of the time I was authorized by her to make them without her after awhile as she began to trust me more. It was really encouraging.
Until Day 4-5. He started behaving in a strange and unpredictable fashion after being woken from the 2.5 day heavily sedated sleep. Being there and being privy to it in the first person rattled me immeasurably but I am quite good in a medical crisis that is not my own, and sought out his nurses and got doctors on the floor fairly quickly.
She did not return my calls as promptly as I would have preferred and I was not able at that time, to make decisions for him and he was not capable of doinig it himself.
So I started dialoguing with her on days 5-NOW and the short version is this: Medically we will most likely agree on care. Socially/emotionally/spiritually/psychologically - you are looking at us in agreement about 25% of the time.
Three units later, countless docs - he finally gave the most recent doc, who has been the longest so far at 5 days, releases to speak with me about everything and anything they need and vice versa. I see him for 1 hour sessions 2 times a day. The rest of the time, he is resting and getting better and stronger as we research a new treatment protocol for the chemo.
What I have discovered is, because I am not her favorite person and she has undisclosed issues with me, arguing with her is not a good plan. From the onset, I knew this to be true. So what I have done was converted myself into a sounding board for her when I disagree. I just listen and ask her questions and let her think it all the way to a logical conclusion and then I drop it. When I agree however I vociferously ask lots of questions, propose action plans, get her input on the hows whens and whys and divide up the task list with her at her pleasure to get it done.
She's an unbelievably bright and intellignet person so the last thing I want to do is to alienate her by showing anything that looked like superiority. The bottom line was - I Believed 1-2 days in this particular environment would be beneficial. I believe that 10-14 days would have caused backwards movement in him.
She commented that she thinks I know him better than she does. I tap danced out of that by saying maybe in 1 or 2 things but she is his mother and she has 52 years experience to my 11.
The Point is, When she is barking up the wrong tree, I don't tell her so. I just listen and let her talk it out to a logicial conclusion. When She's right I am her single biggest advocate.
One particular battle we had was on medication. He does not want anything beyond the medical necessity meds ( heparin) and the fluids( .09 Saline and Potassium). There is nothing else medically necessary so they needed to stop pushing it.
The short tail on that is, she felt it was better for him, he didn't and was capable of saying no and was adamant about it, so as far as I was concerned, that was a done deal.
What I did here though was listen, read the websites decribing the drug, interactions and side effects. We agreed that this drug was a poor idea as it was clear they didn't read into the rest of his chart. However she then proceeded to investigate ANOTHER drug that would offer the same relief with different side effects. I just listened and said nothing.
I am neutral.
I am Swiss.
Just call me Heidi!
Wednesday, July 09, 2008
Running to catch up
It's been some time since I blogged. The reality is that things here got so incredibly busy that I was simply too exhausted or had literally no time at home to do so.
8 days ago we had the last round of chemo. He came home, as usual, full of ideas and plans. We played a round of trivlal pursuit and watched a doc about baseball. It was a reasonably good evening.
The next day we went to see a friend of ours for Coffee. He belittled and berated me for reasons unknown. he was picking fights in public about the weirdest and strangests things. insert Foreshadowing here.
The next day he went to radiation but came right home and went to bed where he stayed until well after 8PM which is unlike him.
The fourth of July dawned with him vomiting. spaced out with long durations at first it rapidly started to escalate. He was unable to keep food or liquid of any kind down.
By 10PM that night I was worried enough to suggest the hospital. He wasn't quite ready to go. I persisted in mentioning it about every 2-3 hours until 7 AM July 5 when He agreed to go. He wanted to go 911 but that would have taken him to a different hospital. He needed to go to the one where he was being treated. He felt he could ask the ambulance to take him there. I responded with "it's and ambulance NOT a cab!"
Once at the ER, they moved him through rapidly as he was an existing cancer patient. 20 minutes after walking through the door, I was escorting him into the treatment area where they would prep him for admittance.
That's when things turned bad.
He had a seizure in my arms in the hallway while waiting to go into the treatment room.
They ot him regulated and put him on a ventilator to assist his breathing. After 3 hours, they moved him into the ICU where he remained for 2 days.
They monitored his sodium and his potassium both which were dangerously low, they also tested and monitored his kidneys.
They took the tube out and woke him out of his sedation then momved him into the CCU as stepping place to a regular room. He spent 2 days there.
Last night he was moved to a regular rrom on the floor. He was able to see visitors outside of his mom and I.
The band showed up last night. It was a really super visit.
He's very depressed and I took some precautions in this regard. We have a 24 watch on him at this point and I or his mom are there whenever there are visiting hours. We encourage friends and family to come visit as well. He is slowly imrpving and even tried to eat today.
I hope to have him home with me by the weekend. Each day he gets stronger.
8 days ago we had the last round of chemo. He came home, as usual, full of ideas and plans. We played a round of trivlal pursuit and watched a doc about baseball. It was a reasonably good evening.
The next day we went to see a friend of ours for Coffee. He belittled and berated me for reasons unknown. he was picking fights in public about the weirdest and strangests things. insert Foreshadowing here.
The next day he went to radiation but came right home and went to bed where he stayed until well after 8PM which is unlike him.
The fourth of July dawned with him vomiting. spaced out with long durations at first it rapidly started to escalate. He was unable to keep food or liquid of any kind down.
By 10PM that night I was worried enough to suggest the hospital. He wasn't quite ready to go. I persisted in mentioning it about every 2-3 hours until 7 AM July 5 when He agreed to go. He wanted to go 911 but that would have taken him to a different hospital. He needed to go to the one where he was being treated. He felt he could ask the ambulance to take him there. I responded with "it's and ambulance NOT a cab!"
Once at the ER, they moved him through rapidly as he was an existing cancer patient. 20 minutes after walking through the door, I was escorting him into the treatment area where they would prep him for admittance.
That's when things turned bad.
He had a seizure in my arms in the hallway while waiting to go into the treatment room.
They ot him regulated and put him on a ventilator to assist his breathing. After 3 hours, they moved him into the ICU where he remained for 2 days.
They monitored his sodium and his potassium both which were dangerously low, they also tested and monitored his kidneys.
They took the tube out and woke him out of his sedation then momved him into the CCU as stepping place to a regular room. He spent 2 days there.
Last night he was moved to a regular rrom on the floor. He was able to see visitors outside of his mom and I.
The band showed up last night. It was a really super visit.
He's very depressed and I took some precautions in this regard. We have a 24 watch on him at this point and I or his mom are there whenever there are visiting hours. We encourage friends and family to come visit as well. He is slowly imrpving and even tried to eat today.
I hope to have him home with me by the weekend. Each day he gets stronger.