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.
Saturday, June 28, 2008
The life and times of the caretaker
Being a caretaker is rough. I don't know how professionals do it.
It's harder in some ways to be the designated caretaker of a loved one though, because there is a vested interest in their wellbeing. We WANT our loved ones to get better.
If you are any kind of intelligent person, you read a lot on the illness itself, caretaking, alternate methods - pretty much everything you can get your mitts on.
Invariably there is the learning curve of the patient. For example. I've read in several noted medical websites that continuing to take a multi vitamin and various supplements is a good idea. I mention this to Jon. Jon immediately hits the gutt reaction and says "no".
In the beginning, I took offense and immediately argued. Now I don't bother. Why? Because 48 hours after I mention it, he will come up with it on his own and speak to his doctors who, in turn, will either agree or disagree - or in one case , laugh, because we quoted HIS article.
So in my case, being the caretaker here means the following M AJOR tasks rest with me:
It's harder in some ways to be the designated caretaker of a loved one though, because there is a vested interest in their wellbeing. We WANT our loved ones to get better.
If you are any kind of intelligent person, you read a lot on the illness itself, caretaking, alternate methods - pretty much everything you can get your mitts on.
Invariably there is the learning curve of the patient. For example. I've read in several noted medical websites that continuing to take a multi vitamin and various supplements is a good idea. I mention this to Jon. Jon immediately hits the gutt reaction and says "no".
In the beginning, I took offense and immediately argued. Now I don't bother. Why? Because 48 hours after I mention it, he will come up with it on his own and speak to his doctors who, in turn, will either agree or disagree - or in one case , laugh, because we quoted HIS article.
So in my case, being the caretaker here means the following M AJOR tasks rest with me:
- Sole financial provider
- Chief Bottle washer ( and refiller)
- Head Chef
- Lead Research Assistant
- Medical Assistant
- Personal Shopper
- Constant Companion
- Shrink
- Whipping Post
- Housekeeper
- Cat Groomer
- IT Professional
- Professional Ego Booster
- Financial Aid counsellor
You get the idea.
Last year at this time... well - we were breaking up - but RIGHT before that and RIGHT after... my responsibilities were simple. I was the girlfriend. I was the sole emotional support while he took care of his dying brother ( who is still living now by the grace of God). We were still courting.
I miss that. A lot.
What I have discovered in putting his needs completely ahead of my own is that eventually i get tired of being last or not at all. And I lash out. I don't need a lot. However, Last year this time I weighed more than I do now, but I felt prettier, sexier, smarter and loved. Now? I feel ugly and fat all the time. I feel unloved and not in the least bit sexy. As for intellect? Please don't get me started.
Here's the deal though. If I feel all those things.... imagine what he feels like?
Neither of us should have to feel this way andd unfortunately the situation is such that this is going to happen. The high side of this is that because we are doing this together, the downs are more physical for him then mental and emotional. For me the dows are more emotional and mental not physical.
It's not easy and lord knows I add to that list every day.
It's an act from the heart. It's an act of love.
Friday, June 27, 2008
Trust vs. Jealousy
I know I tend to talk about this a lot. But it plagues me, so as I continue to work on it - you guys get to hear about it.
I don't trust people. I have an inherent fear of intimacy. I am scared that if I allow myself to love and trust someone, they will let me down or leave. Or both.
It makes me sad that this a part of who I am. I work hard at this and I am slowly chipping away at it. Jon is no easy task with this. He trusts me far more than I trust him.
That's not really a fair assessment but it's the closest I can get. Our history isn't rosy by any stretch of the imagination. I have said from the beginning that loving someone means loving them warts and all. And I do. With everything that I am capable of giving.
That doesn't mean however that with certain people and certain topics, my stomach doesn't knot up. It does and it happened today. A neat reminder that this problem I have been working on is still there.... smaller perhaps - it didn't last long - but present none the less.
It's not anything he does. Not currently. It's me and what I don't believe of myself. I know this and it makes me sad. I jokingly made a comment tonight as I was getting ready for bed... I got up off the couch as he said "Yeah it's about that time..."
My response was "Yes I tend to be smart that way"
He said " You don't need to tell me that - you need to tell yourself that.... I already know. "
He wasn't laughing or kidding. He was right.
You see I spend a lot of time putting myself down. I don't even really understand where it's coming from. I weigh less this summer than last, and yet I feel fat and ugly. I am in position wth my job that's improved from last year, yet I feel exploited and condescended, I am in a relationship that changed dramatically in 2008, and I can't seem to catch up, I feel like everyone is smarter, prettier, funnier all of that...
As I said before - I know it's me and I know it's in my head.
I am smart - or I wouldn't have the job that I do. I wouldn't hold the position that I do. I may have some extra weight but I am pretty. I am nice and talented and all of that. I take good care of those that I love. I am a good friend and a good life companion.
So why the insecurities?
I really don't know. But I'll keep digging until I find out.
I don't trust people. I have an inherent fear of intimacy. I am scared that if I allow myself to love and trust someone, they will let me down or leave. Or both.
It makes me sad that this a part of who I am. I work hard at this and I am slowly chipping away at it. Jon is no easy task with this. He trusts me far more than I trust him.
That's not really a fair assessment but it's the closest I can get. Our history isn't rosy by any stretch of the imagination. I have said from the beginning that loving someone means loving them warts and all. And I do. With everything that I am capable of giving.
That doesn't mean however that with certain people and certain topics, my stomach doesn't knot up. It does and it happened today. A neat reminder that this problem I have been working on is still there.... smaller perhaps - it didn't last long - but present none the less.
It's not anything he does. Not currently. It's me and what I don't believe of myself. I know this and it makes me sad. I jokingly made a comment tonight as I was getting ready for bed... I got up off the couch as he said "Yeah it's about that time..."
My response was "Yes I tend to be smart that way"
He said " You don't need to tell me that - you need to tell yourself that.... I already know. "
He wasn't laughing or kidding. He was right.
You see I spend a lot of time putting myself down. I don't even really understand where it's coming from. I weigh less this summer than last, and yet I feel fat and ugly. I am in position wth my job that's improved from last year, yet I feel exploited and condescended, I am in a relationship that changed dramatically in 2008, and I can't seem to catch up, I feel like everyone is smarter, prettier, funnier all of that...
As I said before - I know it's me and I know it's in my head.
I am smart - or I wouldn't have the job that I do. I wouldn't hold the position that I do. I may have some extra weight but I am pretty. I am nice and talented and all of that. I take good care of those that I love. I am a good friend and a good life companion.
So why the insecurities?
I really don't know. But I'll keep digging until I find out.
Monday, June 23, 2008
The Go / No - Go on Chemo
Last week, we were supposed to have the last round of chemo.
To re-cap, his bloodwork came back showing some slight anemia and some of the levels were off due to dehydration. They gave him IV fluids and strict instructions to "fluid-up" between then and now.
He went in this morning, had his radiation appointment where they decided to back off the radiation and concentrate on ozone only as the tumor on the left side has shrunk to less than 1/3 it's original size. The one on the right is substantially smaller but not small enough yet. All in all - major progress.
However they were not happy with his blood work. So tomorrow there will be no radiation appointment and there will be no chemo.
The No-go on the radiation is a good thing.
The No-go on the chemo - is not such a good thing.
The chemo that he's on requires a minimum of three doses to be effective. I'm no oncologist, and contrary to the hits my intelligence has taken this week, I'm a fairly intelligent and thorough person when I am researching something. I have read everything available on the chemotherapy drug he's on to date. Every night, I take my laptop into another room and research it on the web. I check the symptom list and review the ones that he exhibits vs the ones he doesn't.
I'm confident there is another round in our future. It just can't happen till the blood work comes back reflecting the right levels. I have been stressed and worrying abouut this since the beginning. I had a nightmare about it last night. Sadly that one came true.
So we wait. We work on the state service applications for assistance in the medical arena. We file the copyright paperwork on his songs. We research the licensing of other tunes for recording purposes.
and we wait.
To re-cap, his bloodwork came back showing some slight anemia and some of the levels were off due to dehydration. They gave him IV fluids and strict instructions to "fluid-up" between then and now.
He went in this morning, had his radiation appointment where they decided to back off the radiation and concentrate on ozone only as the tumor on the left side has shrunk to less than 1/3 it's original size. The one on the right is substantially smaller but not small enough yet. All in all - major progress.
However they were not happy with his blood work. So tomorrow there will be no radiation appointment and there will be no chemo.
The No-go on the radiation is a good thing.
The No-go on the chemo - is not such a good thing.
The chemo that he's on requires a minimum of three doses to be effective. I'm no oncologist, and contrary to the hits my intelligence has taken this week, I'm a fairly intelligent and thorough person when I am researching something. I have read everything available on the chemotherapy drug he's on to date. Every night, I take my laptop into another room and research it on the web. I check the symptom list and review the ones that he exhibits vs the ones he doesn't.
I'm confident there is another round in our future. It just can't happen till the blood work comes back reflecting the right levels. I have been stressed and worrying abouut this since the beginning. I had a nightmare about it last night. Sadly that one came true.
So we wait. We work on the state service applications for assistance in the medical arena. We file the copyright paperwork on his songs. We research the licensing of other tunes for recording purposes.
and we wait.
Saturday, June 21, 2008
How do I get this all done?
I ask myself this question every day.
How on earth am I supposed to:
A. work full time?
B. Refill the water bottles
C. Make crazy amounts of tea
D. Eat
E. Cook
F. Clean
G. Teach
H. Pay Bills
I. Help locate missing items
J. Make sure meds are out
K. Keep house comfortable
L. Practice
M. Sleep
N. Maintain relationships
O. Communicate
I can go on and on but the sad reality is, this is the tip of the iceberg.
I noticed that my cell phone bill is through the roof. Why you might ask. Well, the only time I can speak to people privately is when I am out of the house. I am not going to vent about Jon in front of his face - that's a bit unfair to him.
I miss my life from a year ago. Ironically a year ago around this time is when I was leading up to our last breakup. Funny how I miss that. I don't miss the bad things about it but I do miss the fact that he fought for me.
I wonder sometimes if this was planned. Did God plan for him to move in with me right before he was diagnosed ? Did Jon on some level know how sick he was?
I have no idea what the future holds. that scares me to death. I am trying to relax and not freak out that I don't always get eerything done. For example - I did not vacuum today. I am trying not to feel guilty about that as I hear him sneezing and coughing. I just didn't get there today. I got the groceries done. I got the dishes done. I got the water bottles refilled, his meds put out for tomorrow, mine too, I cleaned out the fridge, I worked my 9-5, I taught 2 lessons, I tore apart the house looking for one of his 1099's which we did not find yet, I changed the cat box, i clipped the cat's claws, made myself dinner, again the list goes on. I did all of that. Yet I feel badly that I did not get to the vacuuming.
I don't know how to get all of this done and still have time to be with him. Tonight I sacrificed the vacuuming so we could watch a movie, part of the Mets game and The soup. That took 3 hours in total.
And Yet I still feel guilty.
How on earth am I supposed to:
A. work full time?
B. Refill the water bottles
C. Make crazy amounts of tea
D. Eat
E. Cook
F. Clean
G. Teach
H. Pay Bills
I. Help locate missing items
J. Make sure meds are out
K. Keep house comfortable
L. Practice
M. Sleep
N. Maintain relationships
O. Communicate
I can go on and on but the sad reality is, this is the tip of the iceberg.
I noticed that my cell phone bill is through the roof. Why you might ask. Well, the only time I can speak to people privately is when I am out of the house. I am not going to vent about Jon in front of his face - that's a bit unfair to him.
I miss my life from a year ago. Ironically a year ago around this time is when I was leading up to our last breakup. Funny how I miss that. I don't miss the bad things about it but I do miss the fact that he fought for me.
I wonder sometimes if this was planned. Did God plan for him to move in with me right before he was diagnosed ? Did Jon on some level know how sick he was?
I have no idea what the future holds. that scares me to death. I am trying to relax and not freak out that I don't always get eerything done. For example - I did not vacuum today. I am trying not to feel guilty about that as I hear him sneezing and coughing. I just didn't get there today. I got the groceries done. I got the dishes done. I got the water bottles refilled, his meds put out for tomorrow, mine too, I cleaned out the fridge, I worked my 9-5, I taught 2 lessons, I tore apart the house looking for one of his 1099's which we did not find yet, I changed the cat box, i clipped the cat's claws, made myself dinner, again the list goes on. I did all of that. Yet I feel badly that I did not get to the vacuuming.
I don't know how to get all of this done and still have time to be with him. Tonight I sacrificed the vacuuming so we could watch a movie, part of the Mets game and The soup. That took 3 hours in total.
And Yet I still feel guilty.
Monday, June 16, 2008
Turning a corner
5 weeks have passed.
We are in the last phase of the treatment and yesterday and today he finally got some of his energy back, his voice and lastly his appetite.
I can't tell you how this makes me feel. He told me joke after joke today when I got home. We watched the Mets lose then win, we watched Tiger Woords in the US open and the Celtics. We watched a great new Law and Order CI and the In Plain Site and rounded the night out with The Soup.
A lot of TV but then that's about all we have energy for tese days. We had a good time though. We talked a lot we had some really entertaining moments.
Last night was even better. I went away to Lily's without him. Much as I didn't want to. I did not want to spend my birthday without him. But I went and came home the same night. I had a good time. As much as could while worrying about him.
By the time we got to dinner... Lily came in with a piece of paper and said that before the festivities REALLY got out of control, she had been asked by someone who was unable to be with us to read something special.
And she proceeded to read a note from Jon about me and how much I do for him and how important I am to his recovery and how I put up with so much always with a smile and how it's a life debt that he looks forward to repaying for the rest of his life.
I , of course, cried.
Because that's what I do.
I actually thought he forgot. I really did. And spent about 4 days being hurt by that.
It was a lovely surprise. But here's the irony. I bought him a card about sending him healing thoughts. And included my poem in it.
So we both gave each other something from ourselves when the other wasn't around.
When I got home, he was waiting up for me. He couldn't wait til I got home.... It was so cute - he's been sitting on this surprise for over a week. I was touched.
We are headed into the last chemo treatment on Tuesday. There is every possibility his anti nausea meds will not make it to the hospital in time thus ensuring a horrible week at the minimum.
He'll be OK. I know in my gut that this is going to be OK. I can't wait for him to get better. He is talking about all the things he wants to do when he's better.... a VERY good sign.
I have four more weeks. I feel like it's groundhog day.....
We are in the last phase of the treatment and yesterday and today he finally got some of his energy back, his voice and lastly his appetite.
I can't tell you how this makes me feel. He told me joke after joke today when I got home. We watched the Mets lose then win, we watched Tiger Woords in the US open and the Celtics. We watched a great new Law and Order CI and the In Plain Site and rounded the night out with The Soup.
A lot of TV but then that's about all we have energy for tese days. We had a good time though. We talked a lot we had some really entertaining moments.
Last night was even better. I went away to Lily's without him. Much as I didn't want to. I did not want to spend my birthday without him. But I went and came home the same night. I had a good time. As much as could while worrying about him.
By the time we got to dinner... Lily came in with a piece of paper and said that before the festivities REALLY got out of control, she had been asked by someone who was unable to be with us to read something special.
And she proceeded to read a note from Jon about me and how much I do for him and how important I am to his recovery and how I put up with so much always with a smile and how it's a life debt that he looks forward to repaying for the rest of his life.
I , of course, cried.
Because that's what I do.
I actually thought he forgot. I really did. And spent about 4 days being hurt by that.
It was a lovely surprise. But here's the irony. I bought him a card about sending him healing thoughts. And included my poem in it.
So we both gave each other something from ourselves when the other wasn't around.
When I got home, he was waiting up for me. He couldn't wait til I got home.... It was so cute - he's been sitting on this surprise for over a week. I was touched.
We are headed into the last chemo treatment on Tuesday. There is every possibility his anti nausea meds will not make it to the hospital in time thus ensuring a horrible week at the minimum.
He'll be OK. I know in my gut that this is going to be OK. I can't wait for him to get better. He is talking about all the things he wants to do when he's better.... a VERY good sign.
I have four more weeks. I feel like it's groundhog day.....
Thursday, June 12, 2008
Seeing stars
You know - I've always heard that head wounds bleed unbelievably.
And now, I can say that, without hesitation, that statement is true.
Today - our air purifier arrived. In all my excitement, I came home and found a location for it, moved the hutch to plug it in and BAM
A heavy glass Pitcher fell on my head.
I never saw it coming. Frankly it never occurred to me that it would fall.
I was holding my head and leaning against the side of the hutch, Jon ran in as I was getting up saying OH MY GOD OH MY GOD I'M BLEEDING - and the volume of blood was huge.
I, of course, panic immediately - no one should be losing that kind of blood....
He is calm, got a dish towel and applied pressure. He is expecting to take me to the ER. We cleaned me up a bit and looked at what I was sure was a gash that required a minimum of 10 -12 stitches.
It was a small dot - too small for even one stitch and not deep at all.
How embarassing. I was sure that it a huge gash - I mean - you had to see the blood POURING off my head! I should need a transfusion!!!!
We put an ice pack on it. It clots up pretty quick. I looked at it in the mirror - I now have strawberry blond hair on that side of my head.... hee hee hee - all Jon could say to that was "Women"
I'm ok - I don't even have a headache - though I am a little bit tired. He had me take my contacts out so he could watch my pupils.... in the event of concussion.... though that seems doubtful.
The pitcher is still unharmed on the floor. The wall looks like someone got brutally murdered.
The air purifier will have to wait till tomorrow I think.....
And now, I can say that, without hesitation, that statement is true.
Today - our air purifier arrived. In all my excitement, I came home and found a location for it, moved the hutch to plug it in and BAM
A heavy glass Pitcher fell on my head.
I never saw it coming. Frankly it never occurred to me that it would fall.
I was holding my head and leaning against the side of the hutch, Jon ran in as I was getting up saying OH MY GOD OH MY GOD I'M BLEEDING - and the volume of blood was huge.
I, of course, panic immediately - no one should be losing that kind of blood....
He is calm, got a dish towel and applied pressure. He is expecting to take me to the ER. We cleaned me up a bit and looked at what I was sure was a gash that required a minimum of 10 -12 stitches.
It was a small dot - too small for even one stitch and not deep at all.
How embarassing. I was sure that it a huge gash - I mean - you had to see the blood POURING off my head! I should need a transfusion!!!!
We put an ice pack on it. It clots up pretty quick. I looked at it in the mirror - I now have strawberry blond hair on that side of my head.... hee hee hee - all Jon could say to that was "Women"
I'm ok - I don't even have a headache - though I am a little bit tired. He had me take my contacts out so he could watch my pupils.... in the event of concussion.... though that seems doubtful.
The pitcher is still unharmed on the floor. The wall looks like someone got brutally murdered.
The air purifier will have to wait till tomorrow I think.....
Tuesday, June 10, 2008
The last year in this decade of my life....
39 years ago.... I was born. Twenty -two minutes ago to be exact.
Not far from where I currently live, no less. I don't even know if the hospital still exists.
The older I get, the more important my birthday becomes to me.
My dad was a big one for celebrating on THE day. We always did dinner on my actual birthday from the time my parents got divorced. That was his thing and he did it well. When he married my step mom - she embraced it as fervently as he did and sort of kept up the tradition after he died for awhile.
To be honest - we stopped it. Largely because my dad died a week before my birthday and it just became very morbid for both of us. Very sad. More her than me... but that's nont surprising.
I realized the other day that this is it. My last year in my thirties. As I write this, I am sitting here in my room, air conditioners humming away the intense heat of the day. I am hearing Jon cough in the living room where he is watching a ballgame and trying to wind down after a rough day, I have my Will and Grace on the TV and a cat on the bed.
Last night, he got his guitar out and played "You are the sunshine of my life". We looked at each other.... I can never describe that look between us, but everyone who see's us.... see's it.
This morning he played the only recording he has of he and the exwife singing together. I didn't know it existed so this was a lovely surprise for me. It was recorded on a 4 track recorded over a decade ago. It's good. It's really good stuff. All the material is the same stuff that he and I are targetting. When we got done listening to it, I commented that his playing is so much better, his lower voice is really rich on the tape but his upper voice today is far superior to what it was 10 years ago. She, not strangely enough, sounds like me. a little bit richer in the lower vocal ranges but I have more power. It was really a wonderful surprise to me.
He got a little sad and a little bit nostalgic. For a lot of reasons, one of which is the fact that he can't sing right now and is worried that he may never get to again. Another because of all the musical acts and bands that the has worked with in his life, the best musical partner for the job was his ex-wife. He misses the musical partnership though he does not miss the marriage. I absolutely can understand that.
I went back to my office and started working. It crossed my mind to tell him that there is more to him than musical performance. So much more. I wouldn't even know where to begin.... But the list is long and distinguished.
I am going to my girlfriends home alone this weekend. When I say alone, I mean without him. I will be amongst from friends and that will be lovely. I'm sad because I don't want to do this without him. I don't want to spend my birthday or fathers day without him. Neither of us have our dad's anymore, but both of us have step dads. He himself was a father until last year.
This is a bittersweet birthday because for as bad as I thought last year's was, this years, not really great either. That is no reflection on my family and friends.... by the way. It's just the circumstances surrounding this year are tough.
We'll make the best of this and muddle through. I have no expectations for tomorrow beyond the coffee I am having with my best friend.
Happy birthday to my friend and counterpart. We share the same name and the same birthday. She is my friend and like a sister to me as well. So, my friend, if you read this, May this year be a wonderful and special one for you!
Not far from where I currently live, no less. I don't even know if the hospital still exists.
The older I get, the more important my birthday becomes to me.
My dad was a big one for celebrating on THE day. We always did dinner on my actual birthday from the time my parents got divorced. That was his thing and he did it well. When he married my step mom - she embraced it as fervently as he did and sort of kept up the tradition after he died for awhile.
To be honest - we stopped it. Largely because my dad died a week before my birthday and it just became very morbid for both of us. Very sad. More her than me... but that's nont surprising.
I realized the other day that this is it. My last year in my thirties. As I write this, I am sitting here in my room, air conditioners humming away the intense heat of the day. I am hearing Jon cough in the living room where he is watching a ballgame and trying to wind down after a rough day, I have my Will and Grace on the TV and a cat on the bed.
Last night, he got his guitar out and played "You are the sunshine of my life". We looked at each other.... I can never describe that look between us, but everyone who see's us.... see's it.
This morning he played the only recording he has of he and the exwife singing together. I didn't know it existed so this was a lovely surprise for me. It was recorded on a 4 track recorded over a decade ago. It's good. It's really good stuff. All the material is the same stuff that he and I are targetting. When we got done listening to it, I commented that his playing is so much better, his lower voice is really rich on the tape but his upper voice today is far superior to what it was 10 years ago. She, not strangely enough, sounds like me. a little bit richer in the lower vocal ranges but I have more power. It was really a wonderful surprise to me.
He got a little sad and a little bit nostalgic. For a lot of reasons, one of which is the fact that he can't sing right now and is worried that he may never get to again. Another because of all the musical acts and bands that the has worked with in his life, the best musical partner for the job was his ex-wife. He misses the musical partnership though he does not miss the marriage. I absolutely can understand that.
I went back to my office and started working. It crossed my mind to tell him that there is more to him than musical performance. So much more. I wouldn't even know where to begin.... But the list is long and distinguished.
I am going to my girlfriends home alone this weekend. When I say alone, I mean without him. I will be amongst from friends and that will be lovely. I'm sad because I don't want to do this without him. I don't want to spend my birthday or fathers day without him. Neither of us have our dad's anymore, but both of us have step dads. He himself was a father until last year.
This is a bittersweet birthday because for as bad as I thought last year's was, this years, not really great either. That is no reflection on my family and friends.... by the way. It's just the circumstances surrounding this year are tough.
We'll make the best of this and muddle through. I have no expectations for tomorrow beyond the coffee I am having with my best friend.
Happy birthday to my friend and counterpart. We share the same name and the same birthday. She is my friend and like a sister to me as well. So, my friend, if you read this, May this year be a wonderful and special one for you!
Saturday, June 07, 2008
Dear God
Dear God,
I am so unclear as to what is happening to me now, why it's happening and how I got to this place.
I know that the life of that caretaker is tough and I know I sound UNBELIEVABLY selfish when I talk about it, because though I am not complaining - I am kind of whining.
But I whine because of good things. I whine because I WANT him to be healthy. I whine because he doesn't DESERVE this.
So I whine.
Oh yes there's a little me me me in there too, because I want OUR life back. I miss those times that we had - the fun, the laughter, the music.... all of it.
In one fell swoop - BAM! Diagnosis -CANCER.
My heart stopped beating that night. That awful horrible night.
Then it started again. With a different purpose. In a weird way, I feel like Jon must have known that it was going to come out this way. Otherwise, why didn't he go home? He came to me after that wonderful and horrible night in Malverne, and never went home again. I still to this day ask why that happened and I don't think I will ever know that answer.
I've never been great on faith in human beings. Faith in you? sure. Faith in the intangible? no problem - I know it's odd. But faith in people? I test them long and hard before I make that decision. Even if someone I have complete faith in has a faith in someone new to me, I still need to test that person, though the recommendation may shorten the test....
Faith in Jon has been an uphill battle. He has faith in me. He trusts me. Implicitly. I will never know why. There are things that have happened between us that, in no uncertain terms, should have destroyed the fabric of this relationship. But it didn't.
I cling and grasp and hold onto to our past as a means to keep forging ahead into the unknown future with him.
I have so many conflicting feelings and fears and problems and stresses. Cancer doesn't just affect the person who has it. It affects everyone around them.
I feel sometimes that I come second, or third - hell there are days I don't feel I even make the priority list in his life at all. His utmost of course, is getting well. But others get far better treatment than I do. The frequent irritability, anger and frustration get taken out on me on a daily basis. There are others who get the nice version of him - people like the whore...
You know it's my sore topic that she still exists in our world. But my pet peeve with her right now is that she gets the good parts and I get the crappy part. She gets to cook for him and send him little inspirational tidbits and what not..... I get yelled at for making him repeat himself because the TV and 3 phones were ringing at the precise moment he decided to comment on something. I get told when food isn't good, tissues are gone - after - not when it's low when I can replace without running out, cats need brushing, air conditioners need to be on - or off.... I need a fresh washcloth.... pick up lemon drops, you get the idea. I'm the one who works, I'm the one pays the bills, I'm the one cooks, cleans, fixes, installs, coordinates - I do everything.
And I hold no resentment for doing it. I do, however, hold resentment towards the fact the she gets treated nicely and has the easy job and I get treated - well - interestingly - and I have the hard one. it's not fair.
But I imagine that this is part of the challenge here. I imagine that you are doing this because you want me to stop being so afraid of her and what she represents. I imagine that the self doubt that I feel because of her presence in our lives for the past year has been very shattering to my confidence. Or lack of. And this is how you are planning to get me past that? really do you think that's the best idea here? I'm not really so sure.....
meanwhile - I am entering into the last year of 30's on Tuesday. And I know that he will do nothing about it. I know it. As sure as I am typing this. I have subtly reminded him, though he pointed out that it was not necessary. He isn't going with me to the country as we planned, because he cannot sustain the trip. He wants me to go alone. I hate that idea. In so many ways I cannot describe.
So I sit here, watching the second movie about someone my age losing the person they love most in the world ( Catch and Release followed PS I love you) and wondering if I am going to end up in that position. And only you know - isn't that right?
The thing that makes me laugh is that we once had a conversation about heaven and hell. Both he and his brother believe that they are on the express train to hell. Jon thinks he's a bad guy. That he earns his nice guy points every day because he's not a nice person. I refuse to argue with him on it because he has made up his mind on it.
But here's my take on that, you can tell me I'm wrong if you want God, but I don't think I am. Or at least I"m close.
See - You don't make junk. There's nothing that you have created that's all bad. Or all good for that matter. If it were all good - we wouldn't appreciate it. There's no real comparison now is there? If you see the darker side of human nature, it makes you appreciate the lighter brighter good side of human beings.
Like the concept of hell. Is there REALLY Hell??? I mean as opposed to heaven? If there really is hell and the "bad" people go there, and You don't make junk - how does that all work? The way I see it, there isn't two places - heaven and hell - there's just one with different levels when you get there.... The many rooms chapters of the bible if I may get specific. Now that doesn't get so specific as I am right now... but if there are "many rooms" surely some of them could be for those folks who have good in them but perhaps did not tap into it as frequently as others did.... Just sort of throwing the concept out there... I could be wrong... No real way to tell.
Jon and his brother are always joking that they are on the express train to hell. The bottom line there, in my book at any rate, is that no one who put their entire LIFE on hold to care for their dying sibling at their own expense is on the express train to anywhere! There are special places in heaven for people like that.
It's also part and parcel of the poor people who feel obligated to fight religious based wars. Honestly - what is that about? I cannot speak for anyone else, nor will I, but I seriously don't believe that, in the case of my own faith, Jesus would have thought that fighting over him and his followers would be that great of an idea. Given the whole 10 commandments thing - more specifically "Thou shalt not Kill" - I"m thinking that this is definitely not a plan that Jesus or God would endorse.
I didn't mean this to turn theological or anything.... Just some things that are mulling around in my brain.
The thing is, I am not unhappy. I won't lie and tell you this is my idea of bliss, but it's a challenge that I embraced. I embraced it without thinking it through logically - not that it would have mattered. The choice would have had the same end result. I just took each thing as it came, solved it, moved on to the next thing. And the next. Till I found myself in a weird stressed out world. A world where I can't speak my mind without really thinking it all the way through to the bitter end, rehearse the conversation and subsequently dismiss it as petty. That isn't me. I have the conversations, I don't let them brood, I don't garbage dump and I don't grudge collect.
Hence the reason I am using this blog the way that I am. If I don't let it out somewhere - it won't be the cancer that kills him!!!! Just kidding....
Love is a powerful motivator.
I hope you can see your way to enlightening this path. Because damn - it's so confusing.
Yours faithfully,
The Contessa.
I am so unclear as to what is happening to me now, why it's happening and how I got to this place.
I know that the life of that caretaker is tough and I know I sound UNBELIEVABLY selfish when I talk about it, because though I am not complaining - I am kind of whining.
But I whine because of good things. I whine because I WANT him to be healthy. I whine because he doesn't DESERVE this.
So I whine.
Oh yes there's a little me me me in there too, because I want OUR life back. I miss those times that we had - the fun, the laughter, the music.... all of it.
In one fell swoop - BAM! Diagnosis -CANCER.
My heart stopped beating that night. That awful horrible night.
Then it started again. With a different purpose. In a weird way, I feel like Jon must have known that it was going to come out this way. Otherwise, why didn't he go home? He came to me after that wonderful and horrible night in Malverne, and never went home again. I still to this day ask why that happened and I don't think I will ever know that answer.
I've never been great on faith in human beings. Faith in you? sure. Faith in the intangible? no problem - I know it's odd. But faith in people? I test them long and hard before I make that decision. Even if someone I have complete faith in has a faith in someone new to me, I still need to test that person, though the recommendation may shorten the test....
Faith in Jon has been an uphill battle. He has faith in me. He trusts me. Implicitly. I will never know why. There are things that have happened between us that, in no uncertain terms, should have destroyed the fabric of this relationship. But it didn't.
I cling and grasp and hold onto to our past as a means to keep forging ahead into the unknown future with him.
I have so many conflicting feelings and fears and problems and stresses. Cancer doesn't just affect the person who has it. It affects everyone around them.
I feel sometimes that I come second, or third - hell there are days I don't feel I even make the priority list in his life at all. His utmost of course, is getting well. But others get far better treatment than I do. The frequent irritability, anger and frustration get taken out on me on a daily basis. There are others who get the nice version of him - people like the whore...
You know it's my sore topic that she still exists in our world. But my pet peeve with her right now is that she gets the good parts and I get the crappy part. She gets to cook for him and send him little inspirational tidbits and what not..... I get yelled at for making him repeat himself because the TV and 3 phones were ringing at the precise moment he decided to comment on something. I get told when food isn't good, tissues are gone - after - not when it's low when I can replace without running out, cats need brushing, air conditioners need to be on - or off.... I need a fresh washcloth.... pick up lemon drops, you get the idea. I'm the one who works, I'm the one pays the bills, I'm the one cooks, cleans, fixes, installs, coordinates - I do everything.
And I hold no resentment for doing it. I do, however, hold resentment towards the fact the she gets treated nicely and has the easy job and I get treated - well - interestingly - and I have the hard one. it's not fair.
But I imagine that this is part of the challenge here. I imagine that you are doing this because you want me to stop being so afraid of her and what she represents. I imagine that the self doubt that I feel because of her presence in our lives for the past year has been very shattering to my confidence. Or lack of. And this is how you are planning to get me past that? really do you think that's the best idea here? I'm not really so sure.....
meanwhile - I am entering into the last year of 30's on Tuesday. And I know that he will do nothing about it. I know it. As sure as I am typing this. I have subtly reminded him, though he pointed out that it was not necessary. He isn't going with me to the country as we planned, because he cannot sustain the trip. He wants me to go alone. I hate that idea. In so many ways I cannot describe.
So I sit here, watching the second movie about someone my age losing the person they love most in the world ( Catch and Release followed PS I love you) and wondering if I am going to end up in that position. And only you know - isn't that right?
The thing that makes me laugh is that we once had a conversation about heaven and hell. Both he and his brother believe that they are on the express train to hell. Jon thinks he's a bad guy. That he earns his nice guy points every day because he's not a nice person. I refuse to argue with him on it because he has made up his mind on it.
But here's my take on that, you can tell me I'm wrong if you want God, but I don't think I am. Or at least I"m close.
See - You don't make junk. There's nothing that you have created that's all bad. Or all good for that matter. If it were all good - we wouldn't appreciate it. There's no real comparison now is there? If you see the darker side of human nature, it makes you appreciate the lighter brighter good side of human beings.
Like the concept of hell. Is there REALLY Hell??? I mean as opposed to heaven? If there really is hell and the "bad" people go there, and You don't make junk - how does that all work? The way I see it, there isn't two places - heaven and hell - there's just one with different levels when you get there.... The many rooms chapters of the bible if I may get specific. Now that doesn't get so specific as I am right now... but if there are "many rooms" surely some of them could be for those folks who have good in them but perhaps did not tap into it as frequently as others did.... Just sort of throwing the concept out there... I could be wrong... No real way to tell.
Jon and his brother are always joking that they are on the express train to hell. The bottom line there, in my book at any rate, is that no one who put their entire LIFE on hold to care for their dying sibling at their own expense is on the express train to anywhere! There are special places in heaven for people like that.
It's also part and parcel of the poor people who feel obligated to fight religious based wars. Honestly - what is that about? I cannot speak for anyone else, nor will I, but I seriously don't believe that, in the case of my own faith, Jesus would have thought that fighting over him and his followers would be that great of an idea. Given the whole 10 commandments thing - more specifically "Thou shalt not Kill" - I"m thinking that this is definitely not a plan that Jesus or God would endorse.
I didn't mean this to turn theological or anything.... Just some things that are mulling around in my brain.
The thing is, I am not unhappy. I won't lie and tell you this is my idea of bliss, but it's a challenge that I embraced. I embraced it without thinking it through logically - not that it would have mattered. The choice would have had the same end result. I just took each thing as it came, solved it, moved on to the next thing. And the next. Till I found myself in a weird stressed out world. A world where I can't speak my mind without really thinking it all the way through to the bitter end, rehearse the conversation and subsequently dismiss it as petty. That isn't me. I have the conversations, I don't let them brood, I don't garbage dump and I don't grudge collect.
Hence the reason I am using this blog the way that I am. If I don't let it out somewhere - it won't be the cancer that kills him!!!! Just kidding....
Love is a powerful motivator.
I hope you can see your way to enlightening this path. Because damn - it's so confusing.
Yours faithfully,
The Contessa.
The line between selfishness and normalcy
I have had the weirdest day.
The thing I am taking away from today is how annoyed Jon is today. Everything I do annoys him. It was not continuous. But it was more like a recurring theme.
Every time I tried to talk to him, he would sigh, roll his eyes, and look at me. Bored. or irritated.
He would ask me things like "Did I leave my book in the bedroom?" I would get up, look, not find it and proceed to look elsewhere. That would be the moment that he would yell at me to forget it.
We watched Juno together and really loved it. It was the only time today that we had a decent time together.
When I left to go teach this evening, he asked me to get him mashed potatoes and gravy. We talked about his not needing to go to radiation on Monday and Tuesday which is good. I mentioned that I was planning to take one of those days off to do some things and have a relaxing birthday. then he pointed at me and said
"I want you to go to lily's next weekend, do you hear me?"
"You aren't coming with me?"
" I don't think I can sustain the trip. "
"We don't n eed to stay overnight if you would rather come home."
"I don't think I can do it. At least not now."
"Ok.... I really wanted to go up there with you"
"I know.... I'm sorry"
I feel so badly. I want him with me for my birthday. even though last year was not the best year at that party, we were still together. I want things to be different. I want things to be the way they were.
Where is the line between selfishness and normalcy?
My problem right now is that infernal uncertainty. I know so much of the things happening today were part and parcel of the disease and the frustration. I can't pretend to imagine what he is going through. I know that I hover at times. He really thinks that I don't listen to him, but it's not a question of my not listening as much as it is him speaking with his back to me or head down and I can't always catch every word.
Instead of cutting MYSELF slack, I berate myself for not doing better by him. I never let him see me cry. I never let him know how angry this makes me and I never let him hear me bitch. he has not yet seen the poem becuase his brain isn't ready to receive it. That's OK.
I have a headache today. It's allergy related. I think.
Or maybe it's stress.
Or all of the above.
The thing I am taking away from today is how annoyed Jon is today. Everything I do annoys him. It was not continuous. But it was more like a recurring theme.
Every time I tried to talk to him, he would sigh, roll his eyes, and look at me. Bored. or irritated.
He would ask me things like "Did I leave my book in the bedroom?" I would get up, look, not find it and proceed to look elsewhere. That would be the moment that he would yell at me to forget it.
We watched Juno together and really loved it. It was the only time today that we had a decent time together.
When I left to go teach this evening, he asked me to get him mashed potatoes and gravy. We talked about his not needing to go to radiation on Monday and Tuesday which is good. I mentioned that I was planning to take one of those days off to do some things and have a relaxing birthday. then he pointed at me and said
"I want you to go to lily's next weekend, do you hear me?"
"You aren't coming with me?"
" I don't think I can sustain the trip. "
"We don't n eed to stay overnight if you would rather come home."
"I don't think I can do it. At least not now."
"Ok.... I really wanted to go up there with you"
"I know.... I'm sorry"
I feel so badly. I want him with me for my birthday. even though last year was not the best year at that party, we were still together. I want things to be different. I want things to be the way they were.
Where is the line between selfishness and normalcy?
My problem right now is that infernal uncertainty. I know so much of the things happening today were part and parcel of the disease and the frustration. I can't pretend to imagine what he is going through. I know that I hover at times. He really thinks that I don't listen to him, but it's not a question of my not listening as much as it is him speaking with his back to me or head down and I can't always catch every word.
Instead of cutting MYSELF slack, I berate myself for not doing better by him. I never let him see me cry. I never let him know how angry this makes me and I never let him hear me bitch. he has not yet seen the poem becuase his brain isn't ready to receive it. That's OK.
I have a headache today. It's allergy related. I think.
Or maybe it's stress.
Or all of the above.
Thursday, June 05, 2008
1:42 AM
The sleepless nights
The wordless fights
You say I don't listen to you
But I hear you, I truly do.
I listen carefully when you cough
I hear you when you choke
When I hear your breathing slow
I finally wind down because I now know....
You are resting.
I can see it in your face.
In repose you are in peace.
The pain is washed away.
Your mind and body are at ease.
The treatment you require
in order to survive
Is not one that anyone would chose
for their hearts desire.
It courses through your veins, for one solid day.
Causing many other symptoms to come along the way.
You are strong enough to bounce back, though each time takes much longer.
What I notice most throughout this process, is your will gets so much stronger.
The power of your brain and your sense of humor never diminishes..
Sadly though, your appetite can't appreciate my wonderful dishes!
I never thought in all that time
That you would decompress with me over Vodka and lime
That the tables would turn as if on a dime
That you would become the patient and I would watch helplessly as you decline.
Though temporary, I realize, that does make things better.
Except when you pant like an Irish Setter.... :-)
I cannot imagine what you are going through inside,
I'm sorry in advance for the things I don't provide.
I miss the way things used to be.
I miss our talks and all the movies.
I miss your touch and your kisses.
I miss the closeness and the way you listened.
I miss our music and that intense connection that blooms
I miss you most even when you are in the next room.
I hate that I keep it all bottled up in here
I can't talk to you like I want to, mostly out of fear.
I fear that you will be angry or sad.
But mostly that I do not want you to feel bad.
I do not want you to ever think
that I blame you for these tumors they are trying to shrink.
Five weeks will soon pass - before you can blink
And we can start again, I think.
Stay strong and fight this. I know you can win.
When it's all over, you can begin to live again.
The wordless fights
You say I don't listen to you
But I hear you, I truly do.
I listen carefully when you cough
I hear you when you choke
When I hear your breathing slow
I finally wind down because I now know....
You are resting.
I can see it in your face.
In repose you are in peace.
The pain is washed away.
Your mind and body are at ease.
The treatment you require
in order to survive
Is not one that anyone would chose
for their hearts desire.
It courses through your veins, for one solid day.
Causing many other symptoms to come along the way.
You are strong enough to bounce back, though each time takes much longer.
What I notice most throughout this process, is your will gets so much stronger.
The power of your brain and your sense of humor never diminishes..
Sadly though, your appetite can't appreciate my wonderful dishes!
I never thought in all that time
That you would decompress with me over Vodka and lime
That the tables would turn as if on a dime
That you would become the patient and I would watch helplessly as you decline.
Though temporary, I realize, that does make things better.
Except when you pant like an Irish Setter.... :-)
I cannot imagine what you are going through inside,
I'm sorry in advance for the things I don't provide.
I miss the way things used to be.
I miss our talks and all the movies.
I miss your touch and your kisses.
I miss the closeness and the way you listened.
I miss our music and that intense connection that blooms
I miss you most even when you are in the next room.
I hate that I keep it all bottled up in here
I can't talk to you like I want to, mostly out of fear.
I fear that you will be angry or sad.
But mostly that I do not want you to feel bad.
I do not want you to ever think
that I blame you for these tumors they are trying to shrink.
Five weeks will soon pass - before you can blink
And we can start again, I think.
Stay strong and fight this. I know you can win.
When it's all over, you can begin to live again.
Monday, June 02, 2008
There'll be tears in my ears....
Ok - a lyrics writer I am not....
These are actual C&W lyrics to a song I am unfamiliar with. A friend of mine used to quote it. They stuck with me, lord only knows why.
Also in a book I read awhile ago, by Mary Higgins Clark, The heroine of the story was describing the aftermath of her sister's death "My eyes would just suddenly start leaking and I had know idea it was even happening."
This is what happens to me now. I don't consciously cry. It's really odd. I'll be watching TV - it could be any show - but for arguments sake we'll use tonight as the example. I came home and Jon told me I didn't have to text him when I was on my way - if he needs something he'll text me. It just wakes him up.
I apologized for disturbing him to which he said I couldn't have known that - which is true.
So we were watching "Sleepers" and old movie but one that I really like to be sure. At the end, I noticed that my face was wet and that tears were leaking onto my hands. I don't think I even realized I was crying. No lump in the throat, no flushed face, no inablilty to speak. Just water leaking out of my eyes.
A really weird phenomenon. Stranger still - I can't seem to stop it.
I'm sure it's a combination of things. I don't feel sad. Really. Stressed - yes. Busy? sure. Lonely even though he's here? absolutely. Feeling that I don't do enough? Hell yes.
But sadness? no. Other than the normal sadness that comes from watching a loved one suffer. And that's what I do more often than not - watch a loved one suffer. Because there is little any of us can do including him.
The latest news is that the Chemo is aggravating his Gout. So we are changing up the non existent diet to include more fruits and vegetables. in liquid form of course. I am reading up on dietary changes that will support both gout and chemo.
Every night I take my laptop and do what I call research projects. I kick off some key words in Google while I write my post for the night. Then I scroll through and read up on the topic of the night.
Diet is tonight again. This is going to be a few days. Any suggestions for websites to look at are appreciated!
These are actual C&W lyrics to a song I am unfamiliar with. A friend of mine used to quote it. They stuck with me, lord only knows why.
Also in a book I read awhile ago, by Mary Higgins Clark, The heroine of the story was describing the aftermath of her sister's death "My eyes would just suddenly start leaking and I had know idea it was even happening."
This is what happens to me now. I don't consciously cry. It's really odd. I'll be watching TV - it could be any show - but for arguments sake we'll use tonight as the example. I came home and Jon told me I didn't have to text him when I was on my way - if he needs something he'll text me. It just wakes him up.
I apologized for disturbing him to which he said I couldn't have known that - which is true.
So we were watching "Sleepers" and old movie but one that I really like to be sure. At the end, I noticed that my face was wet and that tears were leaking onto my hands. I don't think I even realized I was crying. No lump in the throat, no flushed face, no inablilty to speak. Just water leaking out of my eyes.
A really weird phenomenon. Stranger still - I can't seem to stop it.
I'm sure it's a combination of things. I don't feel sad. Really. Stressed - yes. Busy? sure. Lonely even though he's here? absolutely. Feeling that I don't do enough? Hell yes.
But sadness? no. Other than the normal sadness that comes from watching a loved one suffer. And that's what I do more often than not - watch a loved one suffer. Because there is little any of us can do including him.
The latest news is that the Chemo is aggravating his Gout. So we are changing up the non existent diet to include more fruits and vegetables. in liquid form of course. I am reading up on dietary changes that will support both gout and chemo.
Every night I take my laptop and do what I call research projects. I kick off some key words in Google while I write my post for the night. Then I scroll through and read up on the topic of the night.
Diet is tonight again. This is going to be a few days. Any suggestions for websites to look at are appreciated!
Saturday, May 31, 2008
Which poison is the killer?
You know, Jon is a songwriter.
He also writes lyrics and verse.
On the eve or rather the morning of his most recent chemo appointment, he wrote a poem. It was quite funny and I can't quote it until he copywrites it.... BUT
There is a point that he makes. That in order to kill the cancer poisoning his body, he has to poison his body with yet another, different poisons. An exchange of one for another.
The drug they are using is a heavy metal. Platinum, I believe, is a factor in it.
As I have repeated this week, this last round took him down hard. I worry a good deal because I am so afraid that if he's this weak now, if we can't build him up, the next round is really going to take him down to nothing. We have a slight routine starting now where he does a protein drink in the morning and a vegetable drink in the evenings. That way he's getting roughage as well as protein and of course, fat. I am putting out his vitamins each day as well to make sure that his immune system stays as strong as possible.
Today, I had things to do for myself and I was proud that I didn't get antsy or worried until I had been out about 3 hours. Considering I was 30 minutes away from the house, this made me feel a little bit like a caged animal.
I did what I had to do however. I had my nails done and my pedicure. This is pretty much the only luxury I allow myself these days. I headed over to my moms shortly thereafter because my niece was in town.
Of course the brat was asleep.... you know that was coming because I couldn't spend an indefinite amount of time with her....
But I was talking with my folks when my brother and his wife arrived. 10 minutes after that, my aunt and her husband arrived. This was turning into party.... I haven't seen my aunt since my brother got married 2 years ago, so this was nice. She is also a breast cancer survivor twice over.
She had a lot of really nice things to say and very supportive.
On the drive home, I was thinking about the conversation I had Friday Night. A long time friend of mine and I were talking. I hadn't seen or spoke to her since January and so she wasn't current with what was happening in my life.
After I finished the update, she paused and asked me "Why again are you doing all this? You aren't married to him. You aren't responsible for this. "
I was actually surprised. She is the LAST person. And I mean last. To make such a statement.
I thought about it. The reasons I am doing all this.
It wasn't a long thought or process. It was simple. I do it out of love.
And it's not about the status of the relationship. This doesn't need to have rings associated with it, though that would be nice.... it isn't required. To take care of someone you love when they are sick doesn't require marriage.
Oh I see her point - and I appreciate that she looks out for me. But honestly, asked her what she would do if our roles were reversed.
She laughed. She said - nothing dramatically different.
Now THAT'S my friend.
The fact of the matter is, no matter how checkered the past was, it's in the past. No matter what mistakes we both made separately and together, they are in the past and hopefully we learned something from them.
He is in so much pain and discomfort. He is miserable and there is so little I can do for him at this point. I do what is needed and try to add extra support where I can. The only time he doesn't feel crappy is when he sleeps. I sit with him and watch things on TV I never thought I would watch and I'm even getting into it too.... which is pretty funny.
Things like baseball - which is pretty tame. I know the game on a high level and some of the finer points but I'm learning so much more. Being a former half-assed Yankees fan. I have converted to a Mets fan which should make my dad happy.
I think if I had to pick one thing that I would never have given the time of day, it would be the Ultimate fighting and boxing. I even shocked him when we were watching the second match before the big title fight one night.... One guy was taking several blows to the back of the head which is a no-no... I yelled at the TV for ref to call him on it..... I thought Jon was going to pass out from shock! I Don't think he thought I was paying attention to the rules....
He barks at me now. Considering how crappy he feels, I'm surprised it took this long. I don't let it get to me too much. But he feels bad. He apologized for being a crank tonight. The reality is that I knew he would be cranky and miserable. I didn't take it personally.
I have no idea how bad he really feels. I only know that his tolerance for discomfort is so high that if this has taken him down this far, it's really bad. He can't taste anything.
I am expecting this to be like this for another week. Then a good week. Then Round 3.
W e have a total of 5 weeks of treatment left. The tumors have gone down. That is visible. That is good.
I just want him to be cancer free. Forever.
He also writes lyrics and verse.
On the eve or rather the morning of his most recent chemo appointment, he wrote a poem. It was quite funny and I can't quote it until he copywrites it.... BUT
There is a point that he makes. That in order to kill the cancer poisoning his body, he has to poison his body with yet another, different poisons. An exchange of one for another.
The drug they are using is a heavy metal. Platinum, I believe, is a factor in it.
As I have repeated this week, this last round took him down hard. I worry a good deal because I am so afraid that if he's this weak now, if we can't build him up, the next round is really going to take him down to nothing. We have a slight routine starting now where he does a protein drink in the morning and a vegetable drink in the evenings. That way he's getting roughage as well as protein and of course, fat. I am putting out his vitamins each day as well to make sure that his immune system stays as strong as possible.
Today, I had things to do for myself and I was proud that I didn't get antsy or worried until I had been out about 3 hours. Considering I was 30 minutes away from the house, this made me feel a little bit like a caged animal.
I did what I had to do however. I had my nails done and my pedicure. This is pretty much the only luxury I allow myself these days. I headed over to my moms shortly thereafter because my niece was in town.
Of course the brat was asleep.... you know that was coming because I couldn't spend an indefinite amount of time with her....
But I was talking with my folks when my brother and his wife arrived. 10 minutes after that, my aunt and her husband arrived. This was turning into party.... I haven't seen my aunt since my brother got married 2 years ago, so this was nice. She is also a breast cancer survivor twice over.
She had a lot of really nice things to say and very supportive.
On the drive home, I was thinking about the conversation I had Friday Night. A long time friend of mine and I were talking. I hadn't seen or spoke to her since January and so she wasn't current with what was happening in my life.
After I finished the update, she paused and asked me "Why again are you doing all this? You aren't married to him. You aren't responsible for this. "
I was actually surprised. She is the LAST person. And I mean last. To make such a statement.
I thought about it. The reasons I am doing all this.
It wasn't a long thought or process. It was simple. I do it out of love.
And it's not about the status of the relationship. This doesn't need to have rings associated with it, though that would be nice.... it isn't required. To take care of someone you love when they are sick doesn't require marriage.
Oh I see her point - and I appreciate that she looks out for me. But honestly, asked her what she would do if our roles were reversed.
She laughed. She said - nothing dramatically different.
Now THAT'S my friend.
The fact of the matter is, no matter how checkered the past was, it's in the past. No matter what mistakes we both made separately and together, they are in the past and hopefully we learned something from them.
He is in so much pain and discomfort. He is miserable and there is so little I can do for him at this point. I do what is needed and try to add extra support where I can. The only time he doesn't feel crappy is when he sleeps. I sit with him and watch things on TV I never thought I would watch and I'm even getting into it too.... which is pretty funny.
Things like baseball - which is pretty tame. I know the game on a high level and some of the finer points but I'm learning so much more. Being a former half-assed Yankees fan. I have converted to a Mets fan which should make my dad happy.
I think if I had to pick one thing that I would never have given the time of day, it would be the Ultimate fighting and boxing. I even shocked him when we were watching the second match before the big title fight one night.... One guy was taking several blows to the back of the head which is a no-no... I yelled at the TV for ref to call him on it..... I thought Jon was going to pass out from shock! I Don't think he thought I was paying attention to the rules....
He barks at me now. Considering how crappy he feels, I'm surprised it took this long. I don't let it get to me too much. But he feels bad. He apologized for being a crank tonight. The reality is that I knew he would be cranky and miserable. I didn't take it personally.
I have no idea how bad he really feels. I only know that his tolerance for discomfort is so high that if this has taken him down this far, it's really bad. He can't taste anything.
I am expecting this to be like this for another week. Then a good week. Then Round 3.
W e have a total of 5 weeks of treatment left. The tumors have gone down. That is visible. That is good.
I just want him to be cancer free. Forever.
Friday, May 30, 2008
The aftermath and the new intimacies that go with that
Its 48 hours later.
You may recall that I mentioned that I was prepared and expecting this round of chemo to go worse than the first round.
The fact is he is weaker this time, so that stood to reason.
Interesting factoid to note - he came home a little bit tired but in a great mood and kind of raring to go....
He did rest but we did talk a bit about some good topics.
In my rounds of teaching I discovered from the parent of one child ( who is a cancer survivor) that they put a steroid in the chemo IV to help keep the patient energy and immune system stable during admission of the drug and that this is standard practice. I did some research and I believe that this is why he is borderline manic when he arrives home.
Yesterday he had radiation. Had an appointment and rested, then did some laundry and rested. We went to bed early. Or rather, he did. Me? Don't sleep much or well.
Today, he went to radiation, came home the earliest ever and proceeded to determine that some bodily functions that used to work well, no longer work much at all and sent me to Walgreens to pick up something to help out.
In the 10 minutes that I was gone, he almost passed out.
When I came back he was in bed and looked exhausted. I mean, down and out exhausted. I was worried.
He slept all day. When he did wake up, it was only to have some grape juice and then back to sleep.
I left to take care of some things and pick up the necessary dietary supplements as he now has to be on a liquid diet until his throat heals from the radiation. The site on the inside of his throat plus the location of the tumors causes food - even the smallest particles, to get caught in his throat and he aspirates a lot.
He's down 30 lbs. I have been picking up nutritional supplements that are heavy on vitamins and protein. I don't think he should lose too much more weight as that would be very counterproductive to his recovery. I have protein powder to add, I have ensure, myoplex, carnation breakfast mix, ice cream , whole milk, bolthouse farms protein drinks and will pick some Met-rx at GNC over the weekend.
I have to interject that money is getting tight here. We aren't in danger yet but it's tight and I am feeling the pinch. I didn't think that this would happen this fast, but it did and in backtracaking through the books I know why and there was no way to avoid it. I am relieved that he is not working as he can't and he shouldn't. This is NOT HIS FAULT and I DO NOT BLAME him.... I am, however, financially stressed, as well as emotionally and well - all around stressed.
This problem has solutions in place in the distant future, but that doesn't get me through now. I don't want to pick up another student unless I have no other choice because that takes me out of the house more and I do not want to do that either. the solutions are in place, they just haven't kicked in yet. Once they do I will feel better and this part of the stress will be relieved. This too, shall pass.
He's supposed to go to his sister's birthday in the city tomorrow. He laid on the couch tonight and looked at me and said "Tell me I'll feel better tomorrow"
I didn't miss a beat.
"Your goiing to feel fantastic tomorrow and Your sister is going to be thrilled that you are there!!"
" Good" he whispered.
Bet you didn't know I could predict the future, did you?
Well - I can't - but I have something better, prayer.
I am praying that tomorrow is a better day for the man I love.
You may recall that I mentioned that I was prepared and expecting this round of chemo to go worse than the first round.
The fact is he is weaker this time, so that stood to reason.
Interesting factoid to note - he came home a little bit tired but in a great mood and kind of raring to go....
He did rest but we did talk a bit about some good topics.
In my rounds of teaching I discovered from the parent of one child ( who is a cancer survivor) that they put a steroid in the chemo IV to help keep the patient energy and immune system stable during admission of the drug and that this is standard practice. I did some research and I believe that this is why he is borderline manic when he arrives home.
Yesterday he had radiation. Had an appointment and rested, then did some laundry and rested. We went to bed early. Or rather, he did. Me? Don't sleep much or well.
Today, he went to radiation, came home the earliest ever and proceeded to determine that some bodily functions that used to work well, no longer work much at all and sent me to Walgreens to pick up something to help out.
In the 10 minutes that I was gone, he almost passed out.
When I came back he was in bed and looked exhausted. I mean, down and out exhausted. I was worried.
He slept all day. When he did wake up, it was only to have some grape juice and then back to sleep.
I left to take care of some things and pick up the necessary dietary supplements as he now has to be on a liquid diet until his throat heals from the radiation. The site on the inside of his throat plus the location of the tumors causes food - even the smallest particles, to get caught in his throat and he aspirates a lot.
He's down 30 lbs. I have been picking up nutritional supplements that are heavy on vitamins and protein. I don't think he should lose too much more weight as that would be very counterproductive to his recovery. I have protein powder to add, I have ensure, myoplex, carnation breakfast mix, ice cream , whole milk, bolthouse farms protein drinks and will pick some Met-rx at GNC over the weekend.
I have to interject that money is getting tight here. We aren't in danger yet but it's tight and I am feeling the pinch. I didn't think that this would happen this fast, but it did and in backtracaking through the books I know why and there was no way to avoid it. I am relieved that he is not working as he can't and he shouldn't. This is NOT HIS FAULT and I DO NOT BLAME him.... I am, however, financially stressed, as well as emotionally and well - all around stressed.
This problem has solutions in place in the distant future, but that doesn't get me through now. I don't want to pick up another student unless I have no other choice because that takes me out of the house more and I do not want to do that either. the solutions are in place, they just haven't kicked in yet. Once they do I will feel better and this part of the stress will be relieved. This too, shall pass.
He's supposed to go to his sister's birthday in the city tomorrow. He laid on the couch tonight and looked at me and said "Tell me I'll feel better tomorrow"
I didn't miss a beat.
"Your goiing to feel fantastic tomorrow and Your sister is going to be thrilled that you are there!!"
" Good" he whispered.
Bet you didn't know I could predict the future, did you?
Well - I can't - but I have something better, prayer.
I am praying that tomorrow is a better day for the man I love.
Wednesday, May 28, 2008
Chemo Round 2
Today completes the second round of chemotherapy.
He handled it relatively well for the first day. It's always the subsequent ones that get him but I have high hopes for this.
He wrote a poem - it was funny and I laughed as much AT the poem as I did from the responses sent by his friends.
I worried all day because I never know what condition he's going to come home in.
The tumors appear smaller. That's the good news. The bad news is that I have to start bulking him up on liquid diets. He can't eat solid food until his throat starts to heal.
He was really upbeat when he came home. I was so happy and utterly surprised. Three days??? In a row?
We had some interesting conversaton too.... He teased me about the tray - I have this thing that I do on chemo days.
I set up a teak tray on the bed. First I vacuum the mattress with the hepa filter vacuum, put on fresh sheets and use lavendar scented pillow spray. THen I take the teak tray and set it up on the bed with tissues, motrin, a huge bottle of water ( Smart Water by Glaceau with electrolytes!) and the remote controls. I added a bud vase with a silk flower because I couln't get down to to my friends' home and pick some lilacs.
So he walked into the bedroom to lie down, Saw the tray - and teased me.
"?You - with the tray!" he said....
"Hey - you would MISS the tray if I didn't put it out! You had better be nice to me or one day there won't BE a tray!" I replied
"Ha. I'm not buying it. " He commented
"I can be mean if the situation calls for it" I say
"Yeah...about that.... Not buying it!" he says
"I do HAVE limits - they can be pushed" I say
"Yes - which is exactly why I choose NOT to do that. " He said.
I laughed.
So did he.
That's the banter I am accustomed to.
3 good days in a row.
Hmmmm.
Why do I get the feeling I am going to pay dearly for that?
He handled it relatively well for the first day. It's always the subsequent ones that get him but I have high hopes for this.
He wrote a poem - it was funny and I laughed as much AT the poem as I did from the responses sent by his friends.
I worried all day because I never know what condition he's going to come home in.
The tumors appear smaller. That's the good news. The bad news is that I have to start bulking him up on liquid diets. He can't eat solid food until his throat starts to heal.
He was really upbeat when he came home. I was so happy and utterly surprised. Three days??? In a row?
We had some interesting conversaton too.... He teased me about the tray - I have this thing that I do on chemo days.
I set up a teak tray on the bed. First I vacuum the mattress with the hepa filter vacuum, put on fresh sheets and use lavendar scented pillow spray. THen I take the teak tray and set it up on the bed with tissues, motrin, a huge bottle of water ( Smart Water by Glaceau with electrolytes!) and the remote controls. I added a bud vase with a silk flower because I couln't get down to to my friends' home and pick some lilacs.
So he walked into the bedroom to lie down, Saw the tray - and teased me.
"?You - with the tray!" he said....
"Hey - you would MISS the tray if I didn't put it out! You had better be nice to me or one day there won't BE a tray!" I replied
"Ha. I'm not buying it. " He commented
"I can be mean if the situation calls for it" I say
"Yeah...about that.... Not buying it!" he says
"I do HAVE limits - they can be pushed" I say
"Yes - which is exactly why I choose NOT to do that. " He said.
I laughed.
So did he.
That's the banter I am accustomed to.
3 good days in a row.
Hmmmm.
Why do I get the feeling I am going to pay dearly for that?
Tuesday, May 27, 2008
Happy Memorial day
I have been chided by a work friend for not forcing and creating memories between Jon and I.
i wouldn't say that we weren't, certainly not intentionally, but I can tell you that the illness has largely prevented us from some of the routine things that we used to do together.
Today, one my best girlfriends invited us over to cook out. He cannot eat solid food, but we went anyway.
What she figured would happen was that he would sya the upright bass in the corner or the piano and we would lose both he and Lizz.
Well she was right. And thank Goodness.
He really needed the music today. He lit up. Like a tree. At Christmas.
Lit up - I'm not kidding.
I wasn't in the room part of the time, but he called me in at one point and asked me to play a chord progression on the pano for him ( all my music friends can please stop the laughing now... ) and after a few tries, I did finally get it.
Then he moved onto to something else. So I sat and listened. sometimes I sang what I could remember of the tunes ( they weren't his usual because he canoot sing those things).
But he did play You are the susnshine of my life. I was touched because I love that song.
We re-established the connection even if he was being a bit of a plick with me. the eye contact was there. The connetion was back.
I was relieved.
When we got home, he flipped open the Beatles Orchestra scores that he has to Filling a Hole. Turne the light on and called me in from the kitchen.
"Play this" he says.
"Umm... OK" I think - I haven't heard this tune in a long time so this is going to be interesting.... key of F, ummmm not too hard...OK....
We start playing, he gets his guitar and the two of us start jamming... It was so much fun. Just us.
Then hs says.... "I beat you up pretty bad at Ellie's today. I wanted to give you something to play that would make you realize that you DO KNOW WHAT YOU ARE DOING - I've just been doing it longer...."
I had my back to him but I turned and looked at him and smiled.
" You did beat me up. But it wasn't bad. It just pointed out to me that there are stil things that I need to tighten up - I'm better than I was but nowhere hear where I need to be in music theory.... No wonder I had trouble in college theory!"
Then the doorbell rang.
My neighbor next door is probably the lightest sleeper I know. He's also one of the best people I know. So last week when he slipped the note under my door about the TV volume at night on the day that I had my car accident, I was not as responsive as I normally am.
So we had a nice chat. He felt badly for bringing it up and I felt badly that he was losing sleep. We have a great relationship, thank goodness. I do not understand how his other neighbors can be so. umm, high maintenance.
Then he realized that Jon was really not rebounding well. He and I talked a bit about the disease the course it has taken. He got teary eyed... so I took him out to the hall and gave him a hug.
When I returned, Jon wanted to know what happened. So I told him. He looked at me and said "Now I am going to write HIM a note and he'll really get misty when he reads it!"
We both laughed but then we talked about how he had said how he hates when bad things happen to good people and how Jon is such a good guy and how we deserve each other because we are such good people and how unfair and unjust the whole thing is.
And all of that is true.
tomorrow is round two of Chemo. We Pray that the ant-nausea meds made it to facilty otherwise we are going to have a hideous week. They can't be sent to a pharmacy they must go directly to the hospital.
I do not expect this round to go as smoothly as the last one but I pray that it does. I pray he regains his voice and I pray he doesn't lose his hearing.
And then I just pray for us and for life.
i wouldn't say that we weren't, certainly not intentionally, but I can tell you that the illness has largely prevented us from some of the routine things that we used to do together.
Today, one my best girlfriends invited us over to cook out. He cannot eat solid food, but we went anyway.
What she figured would happen was that he would sya the upright bass in the corner or the piano and we would lose both he and Lizz.
Well she was right. And thank Goodness.
He really needed the music today. He lit up. Like a tree. At Christmas.
Lit up - I'm not kidding.
I wasn't in the room part of the time, but he called me in at one point and asked me to play a chord progression on the pano for him ( all my music friends can please stop the laughing now... ) and after a few tries, I did finally get it.
Then he moved onto to something else. So I sat and listened. sometimes I sang what I could remember of the tunes ( they weren't his usual because he canoot sing those things).
But he did play You are the susnshine of my life. I was touched because I love that song.
We re-established the connection even if he was being a bit of a plick with me. the eye contact was there. The connetion was back.
I was relieved.
When we got home, he flipped open the Beatles Orchestra scores that he has to Filling a Hole. Turne the light on and called me in from the kitchen.
"Play this" he says.
"Umm... OK" I think - I haven't heard this tune in a long time so this is going to be interesting.... key of F, ummmm not too hard...OK....
We start playing, he gets his guitar and the two of us start jamming... It was so much fun. Just us.
Then hs says.... "I beat you up pretty bad at Ellie's today. I wanted to give you something to play that would make you realize that you DO KNOW WHAT YOU ARE DOING - I've just been doing it longer...."
I had my back to him but I turned and looked at him and smiled.
" You did beat me up. But it wasn't bad. It just pointed out to me that there are stil things that I need to tighten up - I'm better than I was but nowhere hear where I need to be in music theory.... No wonder I had trouble in college theory!"
Then the doorbell rang.
My neighbor next door is probably the lightest sleeper I know. He's also one of the best people I know. So last week when he slipped the note under my door about the TV volume at night on the day that I had my car accident, I was not as responsive as I normally am.
So we had a nice chat. He felt badly for bringing it up and I felt badly that he was losing sleep. We have a great relationship, thank goodness. I do not understand how his other neighbors can be so. umm, high maintenance.
Then he realized that Jon was really not rebounding well. He and I talked a bit about the disease the course it has taken. He got teary eyed... so I took him out to the hall and gave him a hug.
When I returned, Jon wanted to know what happened. So I told him. He looked at me and said "Now I am going to write HIM a note and he'll really get misty when he reads it!"
We both laughed but then we talked about how he had said how he hates when bad things happen to good people and how Jon is such a good guy and how we deserve each other because we are such good people and how unfair and unjust the whole thing is.
And all of that is true.
tomorrow is round two of Chemo. We Pray that the ant-nausea meds made it to facilty otherwise we are going to have a hideous week. They can't be sent to a pharmacy they must go directly to the hospital.
I do not expect this round to go as smoothly as the last one but I pray that it does. I pray he regains his voice and I pray he doesn't lose his hearing.
And then I just pray for us and for life.