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:

1. Sole financial provider
2. Chief Bottle washer ( and refiller)
3. Head Chef
4. Lead Research Assistant
5. Medical Assistant
6. Personal Shopper
7. Constant Companion
8. Shrink
9. Whipping Post
10. Housekeeper
11. Cat Groomer
12. IT Professional
13. Professional Ego Booster
14. 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.

Trust vs. Jealousy

I know I tend to talk about this a lot. But it plagues me, so as I continue to work on it - you guys get to hear about it.

I don't trust people. I have an inherent fear of intimacy. I am scared that if I allow myself to love and trust someone, they will let me down or leave. Or both.

It makes me sad that this a part of who I am. I work hard at this and I am slowly chipping away at it. Jon is no easy task with this. He trusts me far more than I trust him.

That's not really a fair assessment but it's the closest I can get. Our history isn't rosy by any stretch of the imagination. I have said from the beginning that loving someone means loving them warts and all. And I do. With everything that I am capable of giving.

That doesn't mean however that with certain people and certain topics, my stomach doesn't knot up. It does and it happened today. A neat reminder that this problem I have been working on is still there.... smaller perhaps - it didn't last long - but present none the less.

It's not anything he does. Not currently. It's me and what I don't believe of myself. I know this and it makes me sad. I jokingly made a comment tonight as I was getting ready for bed... I got up off the couch as he said "Yeah it's about that time..."

My response was "Yes I tend to be smart that way"

He said " You don't need to tell me that - you need to tell yourself that.... I already know. "

He wasn't laughing or kidding. He was right.

You see I spend a lot of time putting myself down. I don't even really understand where it's coming from. I weigh less this summer than last, and yet I feel fat and ugly. I am in position wth my job that's improved from last year, yet I feel exploited and condescended, I am in a relationship that changed dramatically in 2008, and I can't seem to catch up, I feel like everyone is smarter, prettier, funnier all of that...

As I said before - I know it's me and I know it's in my head.

I am smart - or I wouldn't have the job that I do. I wouldn't hold the position that I do. I may have some extra weight but I am pretty. I am nice and talented and all of that. I take good care of those that I love. I am a good friend and a good life companion.

So why the insecurities?

I really don't know. But I'll keep digging until I find out.

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.

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.

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.....

Seeing stars

You know - I've always heard that head wounds bleed unbelievably.

And now, I can say that, without hesitation, that statement is true.

Today - our air purifier arrived. In all my excitement, I came home and found a location for it, moved the hutch to plug it in and BAM

A heavy glass Pitcher fell on my head.

I never saw it coming. Frankly it never occurred to me that it would fall.

I was holding my head and leaning against the side of the hutch, Jon ran in as I was getting up saying OH MY GOD OH MY GOD I'M BLEEDING - and the volume of blood was huge.

I, of course, panic immediately - no one should be losing that kind of blood....

He is calm, got a dish towel and applied pressure. He is expecting to take me to the ER. We cleaned me up a bit and looked at what I was sure was a gash that required a minimum of 10 -12 stitches.

It was a small dot - too small for even one stitch and not deep at all.

How embarassing. I was sure that it a huge gash - I mean - you had to see the blood POURING off my head! I should need a transfusion!!!!

We put an ice pack on it. It clots up pretty quick. I looked at it in the mirror - I now have strawberry blond hair on that side of my head.... hee hee hee - all Jon could say to that was "Women"

I'm ok - I don't even have a headache - though I am a little bit tired. He had me take my contacts out so he could watch my pupils.... in the event of concussion.... though that seems doubtful.

The pitcher is still unharmed on the floor. The wall looks like someone got brutally murdered.

The air purifier will have to wait till tomorrow I think.....

The last year in this decade of my life....

39 years ago.... I was born. Twenty -two minutes ago to be exact.

Not far from where I currently live, no less. I don't even know if the hospital still exists.

The older I get, the more important my birthday becomes to me.

My dad was a big one for celebrating on THE day. We always did dinner on my actual birthday from the time my parents got divorced. That was his thing and he did it well. When he married my step mom - she embraced it as fervently as he did and sort of kept up the tradition after he died for awhile.

To be honest - we stopped it. Largely because my dad died a week before my birthday and it just became very morbid for both of us. Very sad. More her than me... but that's nont surprising.

I realized the other day that this is it. My last year in my thirties. As I write this, I am sitting here in my room, air conditioners humming away the intense heat of the day. I am hearing Jon cough in the living room where he is watching a ballgame and trying to wind down after a rough day, I have my Will and Grace on the TV and a cat on the bed.

Last night, he got his guitar out and played "You are the sunshine of my life". We looked at each other.... I can never describe that look between us, but everyone who see's us.... see's it.

This morning he played the only recording he has of he and the exwife singing together. I didn't know it existed so this was a lovely surprise for me. It was recorded on a 4 track recorded over a decade ago. It's good. It's really good stuff. All the material is the same stuff that he and I are targetting. When we got done listening to it, I commented that his playing is so much better, his lower voice is really rich on the tape but his upper voice today is far superior to what it was 10 years ago. She, not strangely enough, sounds like me. a little bit richer in the lower vocal ranges but I have more power. It was really a wonderful surprise to me.

He got a little sad and a little bit nostalgic. For a lot of reasons, one of which is the fact that he can't sing right now and is worried that he may never get to again. Another because of all the musical acts and bands that the has worked with in his life, the best musical partner for the job was his ex-wife. He misses the musical partnership though he does not miss the marriage. I absolutely can understand that.

I went back to my office and started working. It crossed my mind to tell him that there is more to him than musical performance. So much more. I wouldn't even know where to begin.... But the list is long and distinguished.

I am going to my girlfriends home alone this weekend. When I say alone, I mean without him. I will be amongst from friends and that will be lovely. I'm sad because I don't want to do this without him. I don't want to spend my birthday or fathers day without him. Neither of us have our dad's anymore, but both of us have step dads. He himself was a father until last year.

This is a bittersweet birthday because for as bad as I thought last year's was, this years, not really great either. That is no reflection on my family and friends.... by the way. It's just the circumstances surrounding this year are tough.

We'll make the best of this and muddle through. I have no expectations for tomorrow beyond the coffee I am having with my best friend.

Happy birthday to my friend and counterpart. We share the same name and the same birthday. She is my friend and like a sister to me as well. So, my friend, if you read this, May this year be a wonderful and special one for you!

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.

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.

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.

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!

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.

The aftermath and the new intimacies that go with that

Its 48 hours later.

You may recall that I mentioned that I was prepared and expecting this round of chemo to go worse than the first round.

The fact is he is weaker this time, so that stood to reason.

Interesting factoid to note - he came home a little bit tired but in a great mood and kind of raring to go....

He did rest but we did talk a bit about some good topics.

In my rounds of teaching I discovered from the parent of one child ( who is a cancer survivor) that they put a steroid in the chemo IV to help keep the patient energy and immune system stable during admission of the drug and that this is standard practice. I did some research and I believe that this is why he is borderline manic when he arrives home.

Yesterday he had radiation. Had an appointment and rested, then did some laundry and rested. We went to bed early. Or rather, he did. Me? Don't sleep much or well.

Today, he went to radiation, came home the earliest ever and proceeded to determine that some bodily functions that used to work well, no longer work much at all and sent me to Walgreens to pick up something to help out.

In the 10 minutes that I was gone, he almost passed out.

When I came back he was in bed and looked exhausted. I mean, down and out exhausted. I was worried.

He slept all day. When he did wake up, it was only to have some grape juice and then back to sleep.

I left to take care of some things and pick up the necessary dietary supplements as he now has to be on a liquid diet until his throat heals from the radiation. The site on the inside of his throat plus the location of the tumors causes food - even the smallest particles, to get caught in his throat and he aspirates a lot.

He's down 30 lbs. I have been picking up nutritional supplements that are heavy on vitamins and protein. I don't think he should lose too much more weight as that would be very counterproductive to his recovery. I have protein powder to add, I have ensure, myoplex, carnation breakfast mix, ice cream , whole milk, bolthouse farms protein drinks and will pick some Met-rx at GNC over the weekend.

I have to interject that money is getting tight here. We aren't in danger yet but it's tight and I am feeling the pinch. I didn't think that this would happen this fast, but it did and in backtracaking through the books I know why and there was no way to avoid it. I am relieved that he is not working as he can't and he shouldn't. This is NOT HIS FAULT and I DO NOT BLAME him.... I am, however, financially stressed, as well as emotionally and well - all around stressed.

This problem has solutions in place in the distant future, but that doesn't get me through now. I don't want to pick up another student unless I have no other choice because that takes me out of the house more and I do not want to do that either. the solutions are in place, they just haven't kicked in yet. Once they do I will feel better and this part of the stress will be relieved. This too, shall pass.

He's supposed to go to his sister's birthday in the city tomorrow. He laid on the couch tonight and looked at me and said "Tell me I'll feel better tomorrow"

I didn't miss a beat.

"Your goiing to feel fantastic tomorrow and Your sister is going to be thrilled that you are there!!"

" Good" he whispered.

Bet you didn't know I could predict the future, did you?

Well - I can't - but I have something better, prayer.

I am praying that tomorrow is a better day for the man I love.

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?

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.

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.

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.

Jealousy- the wasted emotion

I finally get it.

really - I do.

I get it.

Jealousy - in small doses - kind of OK. In large doses - symptomatic of trust issues.

I also know that if there is one attractive quality, it's confidence and self assurance. Honestly when I look back on how this whole thing came about - it started because I had rebuilt my life to be what I wanted, how I wanted and on my terms.

I was, in a word, successful.

please to note - "was" in this context does NOT imply that I am no longer "succesful". It just means that my success is measured differently.

moving on.

I haven't been displaying lots of that of late. I realize that. I have been accommodating, which is good. I have been caring, which is good. I have been loving which is good.

Then there are things that I do that I can't qualify as "bad" but it is not going to fall under "good" either.

For example. I am better about the whore, but not great. I can't always react the way that I want and even I read into my remarks after they are made. I can't just react and be me. Because I am afraid.

Here's the ironic part. Jon's ex wife was always accusing him of cheating on her. He never did. Once he commits to someone - that's it.

I am just afraid that the commitment isn't as, well, committed, as I want it to be.

But the reality is, there is no home safe enough, no relationship secure enough, if you aren't OK with you.

It hit me in the car on my way home tonight. Like a freight train.

I need to be me. More.

After all, "me" is the one he chose- right?

I keep saying that my life changed so fast that I couldn't keep up. Change never works well with me. But that's what is happening and I have to figure out a way to manage it, keep my household together financially, care for him when this disease kicks him in the ass and not make him feel bad that he has a past. Hell he accepts mine.

It's not that his past bothers me. I don't have a problem with his having a past. Being honest with myself, It's just this one. It's just the whore. If he can forgive ( but didn't forget - DO NOT BE FOOLED) then I Can try.

I'm not jealous of her - or any of his past. I'm afraid of getting hurt. I'm my own worst enemy. So - being smart - I'm changing it up.

I'm going to go back to being me and taking care of my business as much as I am taking care of his.

I can be all the things I need to be. I can work 2 jobs. I can have my own rehearsals. I can take care of him. I can handle the entire household. I can make sure that everything is moving forward. I can be the calming and patient one.

I know I can - I've done that my whole life before him... he's just added to the load but only slightly. This is completely doable and I WANT TO.

What I do for love......

God and his infernal signs

here's the deal.

If She'd let me I'd tell her, it isn't so tough, everybody thinks sometimes that their life ain't good enough. ( Another line from one of his songs).

I had a car accident last night.

This one wasn't full of mystery like the last one though. Metal crunching, actual damage - though cosmetic only and no one got hurt.

Unlike the last time, I was not in the least distracted and very much focused on the road and what was happening. I guess that's why I am a little bit annoyed.

You see, I have a pet peeve. No, not the magazine cards I wrote about years ago. People in a single lane road who are behind a turning vehicle and feel the need to swerve around them.

This is what happened to me. Unfortunately, the woman who did it, was incredibly nice.

It doesn't alter the facts. I still had an accident.

And it depressed me. A lot.

It wasn't my fault. Not that it matters, we live in a no fault state. But the fact remains that this situation reall compounds the problems of living that I am encountering.

Was this accident a sign of something? If so, I'm not sure what. LAst time was so incredibly obvious but this time? Or was it merely a sign for the other person I hit?

Or.... does it have to be a sign at all?

Life as a caretaker is really tough. I do it out of love. And only out of love. He needs me and the fact is I make him comfortable and happy and he feels good about himself when he's with me.

But the treatments are starting to decline his overall health. He sleeps the majority of the day now AND the night but the nights are rough - he's up and down a lot and spends the bulk of the night on the couch because of this.

I miss him. I miss us. I miss the relationship as it was pre-diagnosis. And I feel like an incredible heel for feeling this way. I feel HORRIBLE. I feel selfish.

He's been cooking for me the last 2 days and I love it. I do. And yet, I felt the perverse need to apologize that he feels the need to cook for me. I feel like he should be resting not taking care of me. He argued that he was spoiling me rotten and he liked doing that. Cooking is therapeutic.

We were talking about a friend of mine who had a benign tumor in her brain and all the surgery she had. He went to say something and waved it off. I made him say it. So he said that the whore had had a benign brain tumor. Which I knew as he told me this before. We chatted idly about it.

I know that I, in part, created this situation between us and I can't change how I feel about him, her and their past, but I am trying and he is not giving me the chances though I do think I have shown some growth where she is concerned.

I am so afraid to open up lately. I am afraid that anything I say that is problematic will generate a fight. Strife festers cancer. So I save it all up. And keep it inside. Where it festers. Locked away. Sometimes I write about it here. Sometimes I just can't.

I am afraid. The bottom line is, I am afraid of getting hurt. I am afraid of letting go. I am afraid of letting someone see inside me.

I tried today. I told him something important about the accident. Something that no one else knows. He was really understanding and not in the leasts judgemental.

Good start. Maybe there is hope.

A normal day - mostly

Today was actually quite wonderful.

Nothing special happened. We woke up - he had no voice - I mean literally none. He watched cartoons and I went back to sleep.

I awoke around 10 ( I haven't been sleeping so well so I was able to sleep in). I made him tea as his throat was hurting. I got dressed and walked down to the 7-11 to get him NY Times and me a coffee.

He got himself dressed, took his paper and went down to his local haunt to have some tea and do the crossword puzzle.

I took that time to do the dished and start housework. I have a long list of things that still need doing and now that we know his belongings are in storage I have a LOT more work ahead of me.

I managed to procrastinate just enough to put up the lovely template you see here.... Sadly it took me from Saturday evening into today to complete.

I had a lovely Chat with Mrs Jackson. We talked for a long time.

I finally saw pictures of his ex-wife too. She is not what I expected. Not at all. I had very little descriptive information other than hair, eye and skin tone. She was lovely and though we are complete opposites ( she's tall, I'm not, she's dark, I'm blond, she's blue eyed, mine are hazel green, she's fair skinned, I'm medium toned.) She's heavier than I am, but I see a kinship in her eyes. Knowing hte information that I do about her, we probably would be friends. I see a lot of things in her that I suspected were there.

Meanwhile - I am reasonably sure he saw the whore today, though he was only gone about an hour or two. And I want you all to know that I don't care. I mention it onl because this is a big turning point for me - because I honestly am OK with it. I don't even know why. Maybe I'm just tired. Maybe I am more trusting. Maybe I believe in things more. Maybe it just doesn't matter now. Whatever the reason, I'm not promising that I am completely past it, but I"m getting there.

And no I'm not calling her by her real name. I've come to enjoy her nickname and I don't think I WANT to change it. Not just yet anyway.

On the work front. He has canceled his gigs through July. He can't run the risk of not being able to perform and it's not fair to the restaurants and bars to hold them hostage til the day of waiting to find out if they will have live music that night.

The Band wrote a fan friendly note to their mailing list that was really touching. I want to hug Charlie to be honest. He's a good boy and did a beautiful and supportive job with Jon.

He posted a blog note on his myspace page as well.

During this time, I was still cleaning off my desk, doing a "thinning of the herd" on my books, and I took the leaf out of the dining room table and cleared off the crap and finished the dishes.

We watched to Baseball games ( we won both! ) a boxing match that I am still unclear how that guy won. We ate dinner. I skimmed magazines. I web searched for photo storage boxes ( we have millions of pictures - its sad really).

The house is shaping up slowly but surely. He felt pretty good today which helped me get a lot done. I am buying the makings for beef stew for him and we'll see how that goes.....

stay tuned....