In the media, we always hear the stories of men who go to sleep in a drunken stupor after weeks of partying and wake up next to a wife and 3 kids and wonder how on earth they got there.
It should not come as any surprise that this happens to women too.
I just woke up the other day and realized that I am coming up on 40 years old. I am tired and burnt out of my primary job. I am the caretaker of a cancer patient who is starting to rebel against treatment and taking care of himself. My eczema is out of control though it's trying to make it's way back.
I looked around at my friends. People I used to stay out to all hours of the night, people who drunkenly stood on chairs with lampshades on their heads, friends who kept me up all night crying about this man or that woman - who broke their heart.
They are all married with kids now.
I saw a comedian. I can't remember his name but he's in nine million films. The two favorite roles that come to mind are the kiss-ass sales guy in pretty Woman and the father in !0 things I hate about you ( otherwise known as The TAming of the Shrew).
This guys stand up is so incredibly funny. He does a bit where he's talking to his friends newborn. He's looking as if into a crib and speaking as if to a baby.
"Hi there - did you know I used to hold your dad's head while he threw up??? Did you know it was YESTERDAY?"
He goes on to say that he is unclear how anyone that he knows is allowed to have children - without a permit or anything. No test??? Are you kidding???
I never laughed so hard.
But it did get me to thinking about some things.
Forty is a big birthday and a big number. Have a led an honorable life? Have I done anything to be proud of?
Logically the answer is yes to both. Emotionally, I feel like I have forgotten to put on my underwear before leaving the house. I feel like I forgot to do something. I can't REMEMBER what it is.
Growing older to date has been a gentle process for me. THis one is starting to freak me out a bit. I feel like there is too much at stake and too much I didn't do.
And I"m scared.
You see - We found another lump. It's on his throat. It's not large. But it's prominent enough to see. I got him to make his doctor appts today.
I'm worried, I'm stressed and I'm scared. Oh and a little bit pissed because his radiologist office called the house today claiming they have been trying to reach him and no resonspe fo r WEEKS!!!
WEEKS!!!!!
As I felt my head explode inside, I calmly picked up the phone and called him. My call was not taken ( big surprise) so I lef the information on his voice mail. I also sent him a text message as well.
He walked in 10 minutes later and I handed him the phone and said "Call them. NOW".
And he did.
I complained that I have the opposite of the midas touch to him tonight. He looked at me and hugged me tight. He said " I don't see that - I have doc appts I wouldn't have made if you hadn't gotten on me. That's major."
It's being a grown-up.
Since when did I become the adult? He's 12 years older than me and I am constantly on him about getting things done. Thats not me. I'm the one content to sit on the couch and watch movies when I should be doing the dishes!
We all grow up at our own pace.
But 40 is still scary. For now.
Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts
Thursday, April 16, 2009
Thursday, January 22, 2009
Cancer update and Editorial commentary
I want to be clear on something from yesterday's post. This is a general editorial on myself. Then back to our regularly scheduled program.
I am, now more than ever, of the belief that the specific balance and nature of a relationship and all that that entails is the business solely of the parties IN that relationship.
I say this because of my situation with this other person and the "license" she took and the lack of respect it shows.
I had a conversation with a friend today who in a strange twist of fate, ran into a similar framework - the specifics are different but the above belief still remains.
Here's what I mean - regardless of what goes on behind closed doors, there is a respect and dignity that is attached to each party and the relationship as a whole. If both parties don't strive to honor that, the relationship breaks down. That's what the communication structure and style is for.
I tend to run and hide. He tends to shout and walk out. We found a compromise. It took the better part of a year. These things sometimes happen right away and sometimes they take time.
I want to also address trust. Trust - as you know - is very hard for me. A lot of it is insecurity, which is solely my problem. IN order to make sure this wasn't a deal breaker in my relationship, I used baby steps and goals. Once one step or set of steps was met to attain a goal, I let go of that for awhile and let things rest. THen I worked on a bigger one. And so on and so on.
It's working for me.
So on that note I bring you back to our regularly scheduled post for today.
I am, now more than ever, of the belief that the specific balance and nature of a relationship and all that that entails is the business solely of the parties IN that relationship.
I say this because of my situation with this other person and the "license" she took and the lack of respect it shows.
I had a conversation with a friend today who in a strange twist of fate, ran into a similar framework - the specifics are different but the above belief still remains.
Here's what I mean - regardless of what goes on behind closed doors, there is a respect and dignity that is attached to each party and the relationship as a whole. If both parties don't strive to honor that, the relationship breaks down. That's what the communication structure and style is for.
I tend to run and hide. He tends to shout and walk out. We found a compromise. It took the better part of a year. These things sometimes happen right away and sometimes they take time.
I want to also address trust. Trust - as you know - is very hard for me. A lot of it is insecurity, which is solely my problem. IN order to make sure this wasn't a deal breaker in my relationship, I used baby steps and goals. Once one step or set of steps was met to attain a goal, I let go of that for awhile and let things rest. THen I worked on a bigger one. And so on and so on.
It's working for me.
So on that note I bring you back to our regularly scheduled post for today.
Cancer Update
I got him to go back to the doctor last week. We hadn't been since October. Out of sight out of mind played a small part, but the major reason was that he was out of clinic visits for Medicaid.
We need to have another PET scan. That will determine two things. One, the condition of the cancer at this point and Two, how to proceed from there.
I have learned during this illness that what the doctor says and what he tells me are not always an exact match but they are close.
So when he came home and said "no lumpectomy on the neck but the tonsils will have to come out by removing the jaw" I naturally panicked.
But I kept it all inside, and looked right at him and said,
"Did they actually say that or were they hedging and giving that as the worst case scenario?"
"They were hedging - it's a worst case scenario"
OK. I can work with that. Although it does mean removing his jaw completely and then doing reconstructive surgery with no guarantee that he will have a voice when he's done.
Of course neither of us is feeling to great about that. But. If that's what it takes to keep him alive then that's what it takes.
We shall jump off that bridge when we get to it.
Some bloodwork needs to be done still to determine the status of his kidneys. Other than that he's doing OK. I'm sliding the healthy lifestyle in a bit at time.
We will beat this thing yet.
Thursday, October 30, 2008
Fear - revisited
My dear friend's mom passed away 2 weeks ago.
I woke up in the morning, it was a Friday I remember. I had a bunch of silly facebook things from her between 6-8 AM which is when her son is having his breakfast.
Then I saw her status at 9.
" I am devastated. My mom just passed away".
And I fell apart.
I have never met her mom in person though we have spoken on the phone numerous times over the years.
Her mom was diagnosed a few months ago with Cancer of the throat. It had transferred to the brain though that didn't appear malignant.
What they didn't know, was that it also spread to the the lungs. THe Squamesh Cell Carcinoma had spread to her lungs. Ultimately killing her, though the death vertificate reads Cardiac Arrest.
In trying to help my friend sort through this via email I started to realise that I was sobbing. And So happy that Jon was in the next room.
How could I even tell him that her mom passed away from the very cancer that he has? THe one they said was not terminal? I realise that each situation is very specific and individual, but this puts a definite twist on things - don't you think?
He walks in a few minutes later and I was composed and continuing to write my response to her. I told him that i had heard from her and what she was busy doing and the memorial plans and he commented that it would be truly ideal if we had the money to fly down for it, but we don't so that's out. She knew that. She was OK with that and really didn't expect it.
I let it go at that. He had enough trouble her mom passing as it was. I really can't, in good conscience, tell him that she passed due to a freak spread ( really fast too) of this cancer. His mind - he will go straight to "If it spread that quickyl with her, what's to prevent it from happening to me like that". I don't want him living life scared. At all. ever.
This brought a lot into perspective. I have been holding on to him so tightly that he is itching to break free a bit. It's out of fear that something will happen to him again the minute I am out of sight. The price I am paying for this is too high though. It nearly cost me my best friend in the world. I won't do that. I won't sacrifice that relationship for this one - and he isn't asking me too.
This issue has been brought into a really specific relief right now. HE doesn't know all of it, but he knows I am upset about the whole thing. He decided that we were going to a play in the city together. We are going to get a crowd together and pack the place. It's a great idea. I love it.
I am erring on the side of life. THe secret will eat at me for awhile but it has to be mine.
At least for now.
I woke up in the morning, it was a Friday I remember. I had a bunch of silly facebook things from her between 6-8 AM which is when her son is having his breakfast.
Then I saw her status at 9.
" I am devastated. My mom just passed away".
And I fell apart.
I have never met her mom in person though we have spoken on the phone numerous times over the years.
Her mom was diagnosed a few months ago with Cancer of the throat. It had transferred to the brain though that didn't appear malignant.
What they didn't know, was that it also spread to the the lungs. THe Squamesh Cell Carcinoma had spread to her lungs. Ultimately killing her, though the death vertificate reads Cardiac Arrest.
In trying to help my friend sort through this via email I started to realise that I was sobbing. And So happy that Jon was in the next room.
How could I even tell him that her mom passed away from the very cancer that he has? THe one they said was not terminal? I realise that each situation is very specific and individual, but this puts a definite twist on things - don't you think?
He walks in a few minutes later and I was composed and continuing to write my response to her. I told him that i had heard from her and what she was busy doing and the memorial plans and he commented that it would be truly ideal if we had the money to fly down for it, but we don't so that's out. She knew that. She was OK with that and really didn't expect it.
I let it go at that. He had enough trouble her mom passing as it was. I really can't, in good conscience, tell him that she passed due to a freak spread ( really fast too) of this cancer. His mind - he will go straight to "If it spread that quickyl with her, what's to prevent it from happening to me like that". I don't want him living life scared. At all. ever.
This brought a lot into perspective. I have been holding on to him so tightly that he is itching to break free a bit. It's out of fear that something will happen to him again the minute I am out of sight. The price I am paying for this is too high though. It nearly cost me my best friend in the world. I won't do that. I won't sacrifice that relationship for this one - and he isn't asking me too.
This issue has been brought into a really specific relief right now. HE doesn't know all of it, but he knows I am upset about the whole thing. He decided that we were going to a play in the city together. We are going to get a crowd together and pack the place. It's a great idea. I love it.
I am erring on the side of life. THe secret will eat at me for awhile but it has to be mine.
At least for now.
Friday, August 15, 2008
THe mid-life crisis part II
Sit back and get comfy, Because I seriously do not know how long this is going to take.
Honestly, this period of growth is more painful than the stagnated existence I was in.
But, I am trying to get in the spirit of the thing.
I signed up with Arbonne and am using the products and my face has never looked better.
I am paying ( still) dearly for a phone call I made last weekend to a friend in the midwest that upset me so terribly that I inflicted some major damage on myself afterward. So, needless to say, I am putting some of that behind me and trying to put myself outside the situation and look in.
Jon has realized that I am burning out at work and he's trying to take some pressure off me. He is now able to cover the food shopping in the house, so while I am physically doing the shopping, we're using his money for it. It's been a load off me in a lot of ways.
He also researched the Rec center we have here in town ( a GORGEOUS facility. I was amongst the first day campers there when it opened in the early 70's and my dad was teaching summer school ) and determined that we should both join as they have a full out gym, several pools, ice skating rink and 12 dollar Yoga classes. The annual membership is minimal.
We are both becoming members of the county museum here as well. Something we both like and enjoy. Likewise a work friend is a season ticket holder ( possibly THE BEST seats EVER) at lincoln center for the NY philharmonic and has generously offered the nights he cannot go to us.
Most everyone who knows me will say that I am doing a lot for someone else and not doing as much for myself in the past few months. And while I agree with that in some respects, my mind is all about me and the things I am not getting and not having done for me. Being me, I am not verbalizing those things. Largely so as not to aggravate the cancer ( my old joke - don't make it mad!) But those things turn into resentments and get compared to reality a lot and thus I get very hurt and eventually over time - I get angry.
I used to be better at this. Before the illness - I would just lob it back at him and have it out. I feel sort of powerless and protective that I should not get angry at him.
The reality is, he has cancer. He does not or did not have a lobotomy. He will make me insane, he will drive me mad and make me angry and I will do the same. He makes sure he verbalizes it to me, but I am scared. I am more afraid that the cancer will get worse and he will die. I would rather have here and alive and me be pissed at him, then him dead.
Of course, I was talking about leaving him until Monday night. I am quite sure that is not going to happen unless it is his choice and it's not.
We are talking about some more major investments together. I am writing my will and he will be doing his, though he has no material assets beyond the music gear ( do NOT kid yourself - its' worth more than my new car! ).
My GOSH - relationships are freaking TOUGH!. I work harder at this than I do at my actual job. Which I hate. my job that is.... lol
I have started journaling again to help me re-discover the new path that I am on. I am using a Goddess journal that I was given to help me on the journey. It's not easy but I feel better already.
Oh - I should add that he made me go to the doctor yesterday because my eye was not improving from what appeared to be an allergy related issue. I was unable to wear contacts, but it wasn't red or swollem - just uncomfortable. I have a condition called a deteriorating epithelial. It's not a big deal and nothing that isn't treatable, but the eye doctor is now convinced that my torn cornea's are part and parcel of this condition which is genetic. There is no pain from this just the umcomfortable feeling that something is in the eye.
The big joke for us both was that the solution is a sodium/saline ointment. So I have to put this in my eyes and he has to consume it. What a freaking pair. Also I can't see, he can't hear. Lovely.
He was so relieved and he researched it and discovered that it was truly not serious and the fix is really that simple. So he and the docs agree. Good.
Jon is making efforts that include me and what I want now too. This is a big change from a man who puts himself and his needs ahead of everyone in the world. He asked me to pick up dinner one night from the teh take-out place that I like - he does not. But he found some things on the menu that he can deal with and placed the order and had me pick it up on the way home. I was surprised.
He is a little vain - but then so am I and his vanity has been compromised with the disease. He doesn't feel attractive. It always surprises me. Because he's always attractive to me. So I finally told him that the other night. He should dodge a camera - he is a good looking man regardless of the cancer. But the reality is, he weighs less than I do now and he's 6'1. His hair is starting to thin and fall out from the chemo and he has no teeth. He does not feel strong, he tires easily and is generally in bed by 10. All strange and all odd for him. When I pieced together some things - I understand more. It doesn't make me like the situation more, but understanding really helps.
He researches the internet for news every day. He loves politics and is constantly reading the presidential race news to me. We watch baseball together and cheer the mets on. My dad would be so thrilled!
Anyway - stay tuned. Things are getting better.
Special thanks to Mrs. Jax and my Hil-Bil.
Honestly, this period of growth is more painful than the stagnated existence I was in.
But, I am trying to get in the spirit of the thing.
I signed up with Arbonne and am using the products and my face has never looked better.
I am paying ( still) dearly for a phone call I made last weekend to a friend in the midwest that upset me so terribly that I inflicted some major damage on myself afterward. So, needless to say, I am putting some of that behind me and trying to put myself outside the situation and look in.
Jon has realized that I am burning out at work and he's trying to take some pressure off me. He is now able to cover the food shopping in the house, so while I am physically doing the shopping, we're using his money for it. It's been a load off me in a lot of ways.
He also researched the Rec center we have here in town ( a GORGEOUS facility. I was amongst the first day campers there when it opened in the early 70's and my dad was teaching summer school ) and determined that we should both join as they have a full out gym, several pools, ice skating rink and 12 dollar Yoga classes. The annual membership is minimal.
We are both becoming members of the county museum here as well. Something we both like and enjoy. Likewise a work friend is a season ticket holder ( possibly THE BEST seats EVER) at lincoln center for the NY philharmonic and has generously offered the nights he cannot go to us.
Most everyone who knows me will say that I am doing a lot for someone else and not doing as much for myself in the past few months. And while I agree with that in some respects, my mind is all about me and the things I am not getting and not having done for me. Being me, I am not verbalizing those things. Largely so as not to aggravate the cancer ( my old joke - don't make it mad!) But those things turn into resentments and get compared to reality a lot and thus I get very hurt and eventually over time - I get angry.
I used to be better at this. Before the illness - I would just lob it back at him and have it out. I feel sort of powerless and protective that I should not get angry at him.
The reality is, he has cancer. He does not or did not have a lobotomy. He will make me insane, he will drive me mad and make me angry and I will do the same. He makes sure he verbalizes it to me, but I am scared. I am more afraid that the cancer will get worse and he will die. I would rather have here and alive and me be pissed at him, then him dead.
Of course, I was talking about leaving him until Monday night. I am quite sure that is not going to happen unless it is his choice and it's not.
We are talking about some more major investments together. I am writing my will and he will be doing his, though he has no material assets beyond the music gear ( do NOT kid yourself - its' worth more than my new car! ).
My GOSH - relationships are freaking TOUGH!. I work harder at this than I do at my actual job. Which I hate. my job that is.... lol
I have started journaling again to help me re-discover the new path that I am on. I am using a Goddess journal that I was given to help me on the journey. It's not easy but I feel better already.
Oh - I should add that he made me go to the doctor yesterday because my eye was not improving from what appeared to be an allergy related issue. I was unable to wear contacts, but it wasn't red or swollem - just uncomfortable. I have a condition called a deteriorating epithelial. It's not a big deal and nothing that isn't treatable, but the eye doctor is now convinced that my torn cornea's are part and parcel of this condition which is genetic. There is no pain from this just the umcomfortable feeling that something is in the eye.
The big joke for us both was that the solution is a sodium/saline ointment. So I have to put this in my eyes and he has to consume it. What a freaking pair. Also I can't see, he can't hear. Lovely.
He was so relieved and he researched it and discovered that it was truly not serious and the fix is really that simple. So he and the docs agree. Good.
Jon is making efforts that include me and what I want now too. This is a big change from a man who puts himself and his needs ahead of everyone in the world. He asked me to pick up dinner one night from the teh take-out place that I like - he does not. But he found some things on the menu that he can deal with and placed the order and had me pick it up on the way home. I was surprised.
He is a little vain - but then so am I and his vanity has been compromised with the disease. He doesn't feel attractive. It always surprises me. Because he's always attractive to me. So I finally told him that the other night. He should dodge a camera - he is a good looking man regardless of the cancer. But the reality is, he weighs less than I do now and he's 6'1. His hair is starting to thin and fall out from the chemo and he has no teeth. He does not feel strong, he tires easily and is generally in bed by 10. All strange and all odd for him. When I pieced together some things - I understand more. It doesn't make me like the situation more, but understanding really helps.
He researches the internet for news every day. He loves politics and is constantly reading the presidential race news to me. We watch baseball together and cheer the mets on. My dad would be so thrilled!
Anyway - stay tuned. Things are getting better.
Special thanks to Mrs. Jax and my Hil-Bil.
Wednesday, July 30, 2008
Stresses and hurts
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.
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.
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!
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.
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.....
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.
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.
Monday, May 26, 2008
The good news is I'm not crazy the bad news is, for the first time I am chicken!
Dear Contessa,
Thanks for your email and don't worry that it wasn't short. I could sense just by writing you were working things out. This, my dear friend, is a good thing to do. I encourage you to continue to write, to put on paper (or at least on screen) what you are thinking. Perhaps that is the best remedy there can be.
I'm saddened to hear of the difficult time you are going through and the sense that you and Jon are growing apart. Please know, though, that from my experience, when an individual in a relationship goes through a very difficult time, what you are feeling and going through is a normal part of the illness. Although no one can go through the illness other than Jon, it affects so many others - including you. I have been concerned and continue to be concerned that this illness is affecting you much more than you care to even share. It is vital for your own sanity and grace that you maintain a sense of normalcy in the midst of craziness.
Contessa, I do encourage you to, when the time is right, to share with Jon your feelings. If he cannot speak, perhaps he can write to you. Share for your sake, share for his sake, share for both of your sakes. I know it might be difficult, but anything said out of love is a true gift.Please continue to know I have both of you in my prayers.
In Christ, The Very Rev
I received this email this morning after I broke down last night and wrote out the long litany of what's been in my head and heart for the last couple of weeks. Then I did the craziest thing of all - I just hit send without proofing, re-reading or anything.
That The very rev took the time to read it between services AND responded touched me greatly. It meant a lot and I feel so much better that I have said it out loud.
It also helped me to do a better job at home. This is going to sound stupid, but I have managed to keep up with the housework this week.
His diet has dramatically changed again. We are back to liquids. Not because of the dental work he had done but because the food gets caught in his throat. He hacks and cough and sounds stangely like one of the cats when they are horking up a hairball. But his causes him tremedous pain as well.
My eczema is running hot and cold and its attacking my scalp mostly. I have to relax more.
I also notice that my sleep patterns are really off and I have no ability to hear in my sleep. I used to. But not it takes me longer to come out of sleep and I can be mentally awake nad not be able to hear for 10 -15 seconds. Then it's as if someone adjusted the volume control on my head and I hear everything loud and clear. I also don't sleep a lot of hours at night and am afraid to take anything for fear that I will not hear him if he starts coughing and heaven forbid choking.
I did work out this morning and ate fairly intelligently. We watched Knocked up tonight which is really funny.
I have noticed that in the past few days he's spending some better and more quality time with me. I don't know why and I don't care.
I'm just glad that we are at least attempting to re-connect.
Thanks for your email and don't worry that it wasn't short. I could sense just by writing you were working things out. This, my dear friend, is a good thing to do. I encourage you to continue to write, to put on paper (or at least on screen) what you are thinking. Perhaps that is the best remedy there can be.
I'm saddened to hear of the difficult time you are going through and the sense that you and Jon are growing apart. Please know, though, that from my experience, when an individual in a relationship goes through a very difficult time, what you are feeling and going through is a normal part of the illness. Although no one can go through the illness other than Jon, it affects so many others - including you. I have been concerned and continue to be concerned that this illness is affecting you much more than you care to even share. It is vital for your own sanity and grace that you maintain a sense of normalcy in the midst of craziness.
Contessa, I do encourage you to, when the time is right, to share with Jon your feelings. If he cannot speak, perhaps he can write to you. Share for your sake, share for his sake, share for both of your sakes. I know it might be difficult, but anything said out of love is a true gift.Please continue to know I have both of you in my prayers.
In Christ, The Very Rev
I received this email this morning after I broke down last night and wrote out the long litany of what's been in my head and heart for the last couple of weeks. Then I did the craziest thing of all - I just hit send without proofing, re-reading or anything.
That The very rev took the time to read it between services AND responded touched me greatly. It meant a lot and I feel so much better that I have said it out loud.
It also helped me to do a better job at home. This is going to sound stupid, but I have managed to keep up with the housework this week.
His diet has dramatically changed again. We are back to liquids. Not because of the dental work he had done but because the food gets caught in his throat. He hacks and cough and sounds stangely like one of the cats when they are horking up a hairball. But his causes him tremedous pain as well.
My eczema is running hot and cold and its attacking my scalp mostly. I have to relax more.
I also notice that my sleep patterns are really off and I have no ability to hear in my sleep. I used to. But not it takes me longer to come out of sleep and I can be mentally awake nad not be able to hear for 10 -15 seconds. Then it's as if someone adjusted the volume control on my head and I hear everything loud and clear. I also don't sleep a lot of hours at night and am afraid to take anything for fear that I will not hear him if he starts coughing and heaven forbid choking.
I did work out this morning and ate fairly intelligently. We watched Knocked up tonight which is really funny.
I have noticed that in the past few days he's spending some better and more quality time with me. I don't know why and I don't care.
I'm just glad that we are at least attempting to re-connect.
Friday, May 23, 2008
an interesting revelation
I noticed today that how my day goes is largely reliant on how his day is. How he feels sort of determines how I feel - though not 100% by any means.
Today he walked into the bedroom and turned off the alarm that had been going off for some time. I discovered that I can sleep through literally anything when I take my sleeping pill for my eczema. He had been up for some time and it was driving him crazy.
I expected to hear about it later. Except that he didn't know that I took the sleeping pill at 4AM.
After he left for radiation and blood work, I took my shower, got dressed and did my hair. I looked pretty damn good since I am now down 7lbs... if I do say so myself.
So I sit down and start working, I put my head phones on and start listening to my ipod. Singing along happily.
He walks in, laughing and smiling at my singing.... and starts talking about his blood work. THis is good. we haven't had a "real conversation" in a couple of days because he just can't talk without his voice and he's been feeling generally crappy.
I found a neat but simplistic website for caregivers of cancer patients. The first thing I see is a story submitted by a man who didn't know how to start a conversation with his wife who had lynphoma. He had conversations played out in his head but chickened out when it came time to have them. It was like reading my own personal life. I nearly died laughing AND crying all at the same time.
The bottom line for him, and me, is that we don't speak of certain things out of protection for the other one.
I didn't force it today. The day was going well, he's tired but not in pain and we are gearing up through this weekend. building him up to have his next round of chemo on Tuesday.
Having never been a cheerleader before, largely because I just can't get that excited about sports, this is the challenge of my life. I need to be upbeat and keep him upbeat. This website said that sometimes the caregiveres just can't be upbeat and are tired and exhausted and sick of hearing that being positive is the most important thing.
Oh thank God.
I thought I was losing my mind.
Seriously - I know positive people and even THEY ( Yes you Maple mama!!!) aren't that upbeat 2x7x365. ( I do recall you hurling a desk drawer at me once.... ) . It's just not possible.
So I did something kind of weird.
A few days ago, I pulled out a book that I had in the house but never read. I had a friend who worked at random house publishing many years ago in the self help division ( yes I know it's called something else now...) and she gave me TONS of paperback books. One was called how to make anyone fall in love and stay in love with you.
Or somethng like that. I pulled it off the shelf, initially to put it in the donation box for the library. I skimmed it fast and realized - there are some interesting communication techniques. And some reminders of basic ones. Now I was not necessarily planning for the use that the book intended, but who cares right?
Well, in doing a little bit more skimming I realized in the "eye contact" chapter ( seriously there is one) the one thing that always centers us, is our eyes. And music. And God help us if they lock at the same time - BAM!!!! Lightning bolts. It's scary - and people around us KNOW it. It's really crazy.
So each time we talked today, I turned 100% of my eyes and my attention to him.
I noticed that he was responding. Positively.
We had a lovely afternoon talking and having general conversation. We saw some Tom Waits music on You Tube together. We caught up a bit Then he called the Whore.... and got her youngest on the phone, which was good as that's who he really wanted to talk to, gave the information he had to and hung up. He was relieved that he got him on the phone and not his mom. He wasn't up to the conversation.
He went downtown on his bike. I went to teach. I came got hom first and started working on disecting his original tunes and trying to sort them out on the piano. I want to transcribe the charts and write keyboard parts. Since I am not great at this - it's going to be challenging. Now that the copywrite is in progress I feel better about them.
When he got home, we sort of just hung out, checking email, playing computer games and at 8 he announced that he was exhausted and as he is going in to see his brother tomorrow, he needs to rest.
This was challenging for me as it is 8 PM. He wanted to lay in the Living room and sleep because he can't get through the night. Still. It's constant up and down for him. I feel badly for him, and me, that he can't get through the night and sleeps on the couch most nights. I have offered the bed and he won't hear of it. He feels that i need my rest too and that's why he won't sleep in here. His up and down and need for the TV will keep me awake. Frankly some nights, I would rather have him here and be awake. But that's neither here nor there. Thats ME being Selfish and just wanting the closeness and the connection.
The fact is, I am being me more of the time. And I am seeing some positive results. Today he broached the topic of his voice and singing. He had called Otto's, as a test, to see if they had live music tonight. The Maitre D, announced, happily that, Jon's band was playing tonight. He didn't even know what to think. He called me into the bedroom and tells me this. I started to Laugh. He wasn't laughing. Huh. He told me that the Radialogist said that there is a chance he won't recover his voice after this.
Without missing a beat, my response was, "You don't know that. You have to be positive about this. There's that risk to be certain, BUT it's only a risk not a certainty."
Without missing a beat - he says "OK... I'm POSITIVE that I will lose my voice! - HAPPY????"
We both started to laugh. "Get in the bed NOW and rest!!!!"
He will get his voice back. God can't be that cruel.
Today he walked into the bedroom and turned off the alarm that had been going off for some time. I discovered that I can sleep through literally anything when I take my sleeping pill for my eczema. He had been up for some time and it was driving him crazy.
I expected to hear about it later. Except that he didn't know that I took the sleeping pill at 4AM.
After he left for radiation and blood work, I took my shower, got dressed and did my hair. I looked pretty damn good since I am now down 7lbs... if I do say so myself.
So I sit down and start working, I put my head phones on and start listening to my ipod. Singing along happily.
He walks in, laughing and smiling at my singing.... and starts talking about his blood work. THis is good. we haven't had a "real conversation" in a couple of days because he just can't talk without his voice and he's been feeling generally crappy.
I found a neat but simplistic website for caregivers of cancer patients. The first thing I see is a story submitted by a man who didn't know how to start a conversation with his wife who had lynphoma. He had conversations played out in his head but chickened out when it came time to have them. It was like reading my own personal life. I nearly died laughing AND crying all at the same time.
The bottom line for him, and me, is that we don't speak of certain things out of protection for the other one.
I didn't force it today. The day was going well, he's tired but not in pain and we are gearing up through this weekend. building him up to have his next round of chemo on Tuesday.
Having never been a cheerleader before, largely because I just can't get that excited about sports, this is the challenge of my life. I need to be upbeat and keep him upbeat. This website said that sometimes the caregiveres just can't be upbeat and are tired and exhausted and sick of hearing that being positive is the most important thing.
Oh thank God.
I thought I was losing my mind.
Seriously - I know positive people and even THEY ( Yes you Maple mama!!!) aren't that upbeat 2x7x365. ( I do recall you hurling a desk drawer at me once.... ) . It's just not possible.
So I did something kind of weird.
A few days ago, I pulled out a book that I had in the house but never read. I had a friend who worked at random house publishing many years ago in the self help division ( yes I know it's called something else now...) and she gave me TONS of paperback books. One was called how to make anyone fall in love and stay in love with you.
Or somethng like that. I pulled it off the shelf, initially to put it in the donation box for the library. I skimmed it fast and realized - there are some interesting communication techniques. And some reminders of basic ones. Now I was not necessarily planning for the use that the book intended, but who cares right?
Well, in doing a little bit more skimming I realized in the "eye contact" chapter ( seriously there is one) the one thing that always centers us, is our eyes. And music. And God help us if they lock at the same time - BAM!!!! Lightning bolts. It's scary - and people around us KNOW it. It's really crazy.
So each time we talked today, I turned 100% of my eyes and my attention to him.
I noticed that he was responding. Positively.
We had a lovely afternoon talking and having general conversation. We saw some Tom Waits music on You Tube together. We caught up a bit Then he called the Whore.... and got her youngest on the phone, which was good as that's who he really wanted to talk to, gave the information he had to and hung up. He was relieved that he got him on the phone and not his mom. He wasn't up to the conversation.
He went downtown on his bike. I went to teach. I came got hom first and started working on disecting his original tunes and trying to sort them out on the piano. I want to transcribe the charts and write keyboard parts. Since I am not great at this - it's going to be challenging. Now that the copywrite is in progress I feel better about them.
When he got home, we sort of just hung out, checking email, playing computer games and at 8 he announced that he was exhausted and as he is going in to see his brother tomorrow, he needs to rest.
This was challenging for me as it is 8 PM. He wanted to lay in the Living room and sleep because he can't get through the night. Still. It's constant up and down for him. I feel badly for him, and me, that he can't get through the night and sleeps on the couch most nights. I have offered the bed and he won't hear of it. He feels that i need my rest too and that's why he won't sleep in here. His up and down and need for the TV will keep me awake. Frankly some nights, I would rather have him here and be awake. But that's neither here nor there. Thats ME being Selfish and just wanting the closeness and the connection.
The fact is, I am being me more of the time. And I am seeing some positive results. Today he broached the topic of his voice and singing. He had called Otto's, as a test, to see if they had live music tonight. The Maitre D, announced, happily that, Jon's band was playing tonight. He didn't even know what to think. He called me into the bedroom and tells me this. I started to Laugh. He wasn't laughing. Huh. He told me that the Radialogist said that there is a chance he won't recover his voice after this.
Without missing a beat, my response was, "You don't know that. You have to be positive about this. There's that risk to be certain, BUT it's only a risk not a certainty."
Without missing a beat - he says "OK... I'm POSITIVE that I will lose my voice! - HAPPY????"
We both started to laugh. "Get in the bed NOW and rest!!!!"
He will get his voice back. God can't be that cruel.