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....

I, in some small way, was kidding myself

He's not OK.

The effects of the radiation and first chemo treatment are rapidly catching up with him.

Today I was supposed to have the morning and early afternoon to myself to do "house" things. I called in sick to work hoping to get some rest from the hideous allergies that I was suffering from so I didn't have high hopes in getting a lot done, however.....

He walked in at 9:30AM. He hadn't been gone an hour all told. Confuse me?

I wasn't even out of bed. Laptop on my lap - I looked up over my glasses and realized he looked grey. GREY!

And the clear exhaustion on his face and general fatigue that was taking over his body, well, frankly it scared me.

He wanted to sleep desparately. I gave him a melatonin and he was out in about 15 minutes. I left the house to go to the pharmacy and pick up some letters for the state aid programs. I was gone from 11:30 -3PM I came home and he was still sleeping.

I did the dishes, I completely organized all our cd's - you wouldn't believe the number of CD's 2 musicians can manage to accumulate. I left to teach one lesson. I came home and he was still sleeping. I put the dishes away. And then he woke up. It was after 7. He tried to eat. Really he did - but he has no appetite.

Everything tastes salty to him. I made him Kraft white Cheddar mac and cheese - no dice. we added american to it - still no dice. finally gave up and ate an italian ice. That was OK.

It stayed down too. That made me happy. He's drinking unbelievable amounts of water. That's good too.

I'm worried but trying to keep one step ahead of the curve with the symptoms. He's going to be out most of the day tomorrow at the medicaid office and radiation. I want to hang his pictures up with mine. Something to cheeer him a little.

I was kidding myself when I thought he would get through with minimal side effects. These are coming somewhat fast and furious. If I'm honest with myself they were starting Friday not Saturday.

stay tuned.

and...he's back!

Well, the man that I love so much has resurfaced - a bit.

The energy is better today, the masses are shrinking noticeably and today he thanked me for being patient and apologized for not being up to doing anything at all recently.

I had him laughing when I said "Don't worry". He really thought I said "It's OK" so his response was a frustrated "It's NOT OK"....

He had no choice but to laugh when I said " I never said it was OK,.... I told you not to worry!"

I have to admit that I am having a harder time writing than I normally do. A lot of it has to do with the specifics of my life now. I work all the time. I mean all the time. Downtime for me is when I sleep - which is never through the night. I am always waking up for every little shift and movement. I am always conscious of his condition even if he's sleeping on the couch. Which is more and more common as his sleep patterns become more interrupted. Less from pain but more from the treatments.

The Radiation knocks his energy level down quite a bit. I knew that was a side effect going in but I think we were both unprepared for how hard that it hit him. He still has his hair, but we don't know how much longer. He thinks it will come out this week. I am not so sure on that. But either way, my response is the same, it's just hair and it will grow back. I love you whether you have hair or not!

Of course life goes on around us. The world didn't stop turning just because he has cancer. But I still get frustrated when some of my friends and I talk and they act like it's not happening - I have friends who are so consumed by their own lives that they even forget to ask me how I'm doing. Honestly that's frustrating but on the flip side of that - I completely and totally understand why I don't get those questions. It's uncomfortable. It's first on my mind - but certainly not on everyone Else's. Nor does it have to be! HA - that's MY self involvement!

My closest friends and buds aren't that shy. Regardless of comfort level - they ask. They offer. They do. I don't have to pretend that things are merrily rolling along with them. That's what makes them my buds, my friends and my pahtner ( and their spouses!).

I have a really good friend whom I love dearly. When my dad died - she didn't say a word. Not one word and I sat next to her every day. Finally after a month or so, I asked her "Is there some reason you haven't commented on my dad's passing" and she burst into tears. I was stunned. She said she felt so bad that she didn't say anything or do anything because she didn't know what to say or do. She just knew that it was horrible and she felt like a bad person. I started to laugh and pretty soon so did she. I said we were quite a pair. We knew EVERYTHING about each other - but that one thing really threw her for a loop. She couldn't rebound fast enough and subsequently felt guilty. The laughter brought us back to center and we've been fine ever since.
I now know where her demarcation is in her comfort zone.

The lesson I walked away with there is that lots of people don't handle these curve balls the way you might expect. Sometimes it comes to you in the form of disinterest and boredom. Other times, it's completely inappropriate commentary and still others come in the form of complete self involvement. Then there are the friends who call every couple of days to make sure that he's OK and I'm OK and if we need anything or share some research they've read about or just listen. I have had his friends, who barely know me at all, calling to let me know that they are thinking about us.

My priest made a very interesting point today. I am not Wonder Woman - even if I do own the costume. Wonder Woman wasn't even wonder woman - she was just Linda Carter with big boobs! I have a lot of trouble asking for help. I am not good at this at all. I happen to be fortunate that I don't always have to - I have really amazing friends who reach out FIRST. I also have a small contingency of friends that I know I can call and just vent when I can't sort it out. I just have to actually execute it and not internalize so much.

I teach a family that is amazing to me. I am fortunate to have them around. The parents have 2 biological children, 2 adopted children and 2 fosters who are soon to be adopted. The age range is 2 -16. The parents are really great people and this is a crazy insane loud household. I was talking to the mom about how things were going here. Amidst her trying to give me one of her kids to take home.... ( not ever happening) she basically told me that though it was killing me to not say what was on my mind about how things were going with us during these last few days, I did the right thing.

There is no way that I could communicate my frustration and sadness without him feeling guilty for being sick. There just wasn't. Once he apologized and started communicating about general things, I was able to do the same. For some reason, we shook it off today.

Today I bought him Arthur Treachers Fish and Chips for dinner. There is only ONE in the entire county. He ate it. He was happy. I was happier because he ate an entire meal. in one sitting. He paid for it dearly after - but he kept it down and felt happy for eating. We watched the Mets game alternating with Law and order and Steel Magnolias. He let me wait on him and fuss a bit which frustrates him and makes me feel useful. Odd isn't it?

He's not comfortable and he feels generally crappy. We are only at the tip of the iceberg right now and this could stand to get so much worse.

When you are alone you can make any choice you want, but when someone loves you, you lose that right . My choices now are made around him and how he feels and what he needs. If I can't do it myself, I will find someone who can.

That which doesn't kill you, makes you stronger!

My midlife crisis

I think I am having a midlife crisis.


Shit.


shit!

SHIT!!!!!!!!!!!!!!!!!!!!!

I'm way to young to be doing this.... And how do women have mid life crises anyway????

"She thinks her life's been worthless and it makes her so sad" is a line in one of Jon's songs and though it was written about someone else long ago, it applies to me now.

I have looked at my life lately and am feeling that it has been without worth. worthless in effect.



Yes I realize that nothing is all black or all white. Nothing is. But my overall sense of things is just that- worthless. without a point. And how did this happen?

I'm trying to sort out the exact moment when life turned and went in this direction?

This week was hard.

We started with Chemo. it was tough, but he rallied well until the weekend.

Then I started back to teaching and decided against grieving some kids competition scores. I wrestled with it for awhile. I feel like I am taking the easy way out and perhaps not doing the right thing by these kids, BUT, the fact remains that in grieving something subjective, they will stand by the adjudicator which is as it should be even if I disagree with the adjudicator. It did mean the difference in a score level for 2 and one kid who got a perfect score was coached by the same adjudicator so she could get that score, but I don't see me getting anywhere with it. And the fact remains that other than one small thing, this person was spot on in her remarks - both good and bad.

That made me feel a little bit like a sell out. Even if I am doing the right thing.

Then Thursday Jon spent the day at the state aid office filing for medicaid and other state aid programs. Before I realized it, I had disclosed every dime I make, how much my home costs, my car, savings, 401K, retirement, trust fund etc, salary etc. including my SSN.


Now I don't know about you folks, but I don't disclose that kind of information to anyone but the person I intend to marry. And that's not something that's on the table at this time or perhaps ever.


I was uncomfortable - not because I don't trust him, but because it's on file with the state now and I don't know what could mean in the future. So on my way home from my dress rehearsal - I called the board president of our singing group as his day gig is that he is an attorney. I ran all my problems with this disclosure past him and he told me that the questions are valid but that legally since there is no marriage and our state has no common law ( not that we'd be eligible at this point anyway) I have no responsibility other than what I CHOOSE to do in terms of financial support.


Please don't misunderstand me, this is not a reflection of the relationship - I just was very tense about being on the radar for any reason. Every dime I make is reported to the IRS and there is nothing that I owe - it's just a general feeling that wow - this is really private stuff... I don't know how happy I am at disclosing this - at the point in our relationship Of course if we were married he wouldn't be eligible at all.


Meanwhile prior to that rehearsal, amidst a horrible day at work, it occurred to me that I carrying 100% of the household expenses in addition to the personal expenses for BOTH OF US. I am also doing 90% of the chores. I am organizing the "stuff" that made it's way into the house.

Today was a busy day for us. On the calendar for a number of weeks now, we have had a First Holy communion for the son of our best friends. My concert was tonight with me doing the Soprano Solo's for the Haydn Missa Nicolai.

During the week he announced he was going to to a reading of a play in the city.

Now - I won't tell you that I was pissed or angry - not in the least. On the contrary I was concerned that he was over programming himself and would suffer for it.

Truer words were never spoken.

Guess who else got suffer along with him?

Yes - me.

I don't know how to say this without seeming like a supreme Queen Bitch. So please take this with the spirit that is intended.

I feel like I am being taken for granted. That everyone and everything comes ahead of me. He over programmed his day and managed to get the communion in and the play - but who got cut? me.

This is not even the first time it happened. It's becoming more and more common of late.

Oh he's not cutting me in lieu of other things. He is sick. He has cancer. When I got the call that he wasn't coming because the queasy feeling finally manifested into full out nausea and he was throwing up for the first time, I broke out in tears. Again. As I was leaving to go to the concert in the first place, he got angry and yelled at me out of frustration for not feeling well enough that he couldn't go. I got nothing from that. No hug, no kiss, no reassurance, no "break a leg". Nothing - just anger. It's not directed at me, but it is. It's directed at himself and taken out on me. I cry because I hurt for him and because of him.

He's not out having a party. He's making some interesting choices. By interesting I mean "not thought out"

I am not unhappy with the overall just this part and I know that we have to talk about it BUT that conversation won't go well. I don't want to aggravate the disease either which this kind of stress will aggravate. But I've gotten so frustrated that all I can do is cry. and cry and cry and cry. Lots of tears over this situation and the news that he may have a recurrence in the vocal chords and his career will end altogether. Tears over the fact that I am not only not second but these days I am not sure I make the list at all of people and situations that are important. Tears over the old joke "what do you call a musician who breaks up with his girlfriend? Homeless" Because in this case it's true.


I cry out sadness and frustration and through it all I love him. I do. I can't help it. I know that he does not do this intentionally. The fact is he has not figure out where the breakpoint to being tired and feeling like crap is and he over programs his days - or severely under programs. The fact is he has blown others off when he feels crappy and has stayed home here with me.

I don't know if this qualifies as a midlife crisis or if this is just A crisis.


So this morning I sit here and type. I am trying to regain some perspective. Yet I still have this underlying feeling that my life has been worthless and yes it does make me so sad. He is still not well this morning, but he slept last night. I came home and he was out cold on the couch and I left him there.

I know he doesn't do this on purpose. I know he doesn't do it only to me, but I live here too so I get that extra dose of being taken for granted.

I end where I began - I sit here and consider the time I have lived and search for the moment that my life became worthless and lick my wounds and feel sorry for myself until I come up with a solution that works.

Predictions

You know - I love astrology. Horoscopes, psychics, Tarot cards, all that crazy stuff.

I admit to dismissing the bad and embracing the good readings when I go looking for it myself.

I do always laugh when my life seems to be goinig in a particular direction that makes no sense to me whatsoever and I go back and look at my horoscope for that period of time and BAM!!!! It's spot on.

I recently read my horoscope for this year. It was spot on at least til now. I haven't seen a psychic recently - I admit to being a little bit afraid of what they will say. I play with tarot cards all the time though. Varying results as you can imagine.

Though I admit to being skeptical, the last time I saw I psychic I gave no information whatsoever other than I wass looking for someone who passed on. Since I had had 3 deaths wiht in a few months it could have been any one of them.

The poor woman - she found all three if you can believe that. And she knew information she couldn't have known. It was a little weird. I laughed though - I am popular even on the other side - there was a crowd waiting to talk to me!!!!! She asked me if I had a brother or childhood friend named Mark or Tim - Damn woman!!!!! I had both!!!!! deceased 2months apart no less!!! I asked her to be more specific - she said OK.... I worked with one and got my job through him!!!! Well crap - that's not a story I tell a lot - but Tim did get me my job at my current employer.

But not who I was looking for - and I told her to please convey my apologies and I would check in another time.... she laughed and said he was fine with it and went to the next one. Mark, she declared, was an old boyfriend or lover of mine. We had known each other since very young. We had mutual friends in common for at least the same amount of years. And he died by something of the throat - cancer? Strangulation? Asthma? She couldn't really get that. Well shit. That about sews that one up - but no still not who I was looking for. Again I asked her to convey my apologies and was anyone else waiting???? She said OK but it would really help if you would give me something. I said no sorry!

So she comes up with an older man, an uncle or parent, musical and she saw him in a wooden room with a brick wall. It was under construction. He was lyinig on scaffolding or a platform. She couldn't be sure but he wasn't hurt. He was happy. in that place.

Huh. again. shit. Again.

That was it - that was my dad. In the room that he built. Lying on Scaffolding Varnishing the cathedral ceiling.

Still not wanting to give away the shop so to speak. I asked her for more. She told me that he was happy and he that he missed me and was prouod of me and my music.

I was sold at this point.

I walked away reviewing this entire exchange ( 15 mins by the way). While odd and exact, I still felt I was feeding her though I was really careful about what I was giving her to work with.

This was many years ago. I haven't seen one since. This one was a fluke at a party. On one level I want to contact her and pay her for a real reading.

I am so afraid of what I will hear given my current circumstances. So afraid that she will tell me that I have the love of life here, but will llose him to this awful disease. Is it better to hear that now and be able to prepare? Or not to know and work towards beating that?

I am taking choice B .... for now. Here's why.

We had the first round of chemo on Tuesday. It went well. Better than well. He came home bouncing and full of energy I haven't seen in weeks. He even went out and did a recording session for one of his songs. Today he's more tired, but the mass looks smaller and the internal bleeding has slowed.

But the doctors were pretty clear. Even if he goes into a remission and beats this, it could come back and attack his vocal chords next time. They are vulnerable. We discussed the idea of removal of the tonsils to elimate the recurrence at the same site after remission. I am all for it if the doctors give the high sign. It's not like he needs them for anything. Yes he will be down 4-6 weeks in recovery, yes it will alter his voice somewhat, but come on! You live with a vocal coach!

Mostly what I want for him is to be alive. And healthy. I want for him to be here with me. My new quote is

"When you are alone, you can make any decision you want because it only affects you. But when someone loves you, you have to take everything you do into consideration for that other person and how it will affect them"

I heard it today after I finished that conversation. It was as if my dad was looking down and saying - You are doing the right things with Jon and his illness. Just like you did with me. Be good to each other.

My response to my dad was "Don't take him yet. I'm not ready!"

I'm pretty sure he heard me.

Catharsis

I tend to be a half full person. When life hands me lemons either I make lemonade or get out the tequila.


This has been one of my greatest challenges. Since Jon's diagnosis, I have not really cried, or had an emotional reaction in front of him. My worry is on my face at times or in the way I hover a little too much over him when he's in pain, but otherwise I stay the course and keep everyone positive and moving forward.


This week things were strained in large part because of me and my inability to quickly process events, make a decision and move on. It takes me longer than it takes him.


His computer has a virus and is a mess. I have been slowly working on it and trying to correct. It's slowly improving but I hit an impasse by Wed. So I took a day off. And his head exploded - not at me - but at himself for clicking on something he shouldn't have in the first place. He is very careful to qualify his frustration because he knows how many hours and how much money I have been spending to put it right again. But I know it's a pain in the ass - I hate it as much as he does.


So Thursday night when I arrived home from teaching, I poured myself a glass of wine, picked up my laptop and walked it over to his desktop and logged into my email to start re-working this machines registry line by line ad nauseum.


I was quiet. Working gave me the out. I didn't have to talk which is good as I was still really processing things.


At one point I asked him to please come over and pop his email password in so I could verify that login was working. He just verbally gave it to me and told me to play around as much as I wanted - nothing there I couldn't see. I was overwhelmed by the trust he has in me. Especially after I unwittingly violated that once a year ago.


I got all done with everything I could do and kicked off a NOrton Full scan and went to make my self dinner.


I sat down in the living room with my homemade waffles and he put on "God Said, Ha!". Now I don't care if you have personal identity with the situations outlined in the film or not - it's going to hit you between the eyes. For those of you unfamiliar, Julia Sweeney is doing poignant but funny at times monologue on her brother's cancer fight as well as her own. She survived, He did not.


In watching this film, I found myself unable to laugh, though she was absolutely hilarious. Unable to cry - and LORD KNOWS I WANTED TO.


Then she made some wise assed remark about her brothers responses to the shunt put in his forehead to help with fluids. I have to tell you that not only was that the funniest thing I had head, but it reminded me of his brother and the reactions that his brother routinely has at things like this. I looked at him and realized he was crying.


Then it occured to me that I was crying too.


Huh.


How did that escape me - had those tears been there all along?


Nah - I would have noticed to be sure.


I lean over and hug him. He tells me no no no - but doesn't push me away so I stay and just hold him.


Then he pushes me away - moment had passed.


We continue to watch this and it occurs to me slowly that I am not who he wants around right now. So the next round of tears that comes up - I look at him and he puts his hand up as if to say "don't touch me". I do this all the time to be honest... So I try not to take it personally. But I do say "I know I am not who you want around right now".


He responds by taking my hand and saying:


"You are going to meet everyone. Joann, Denise and yes, the whore. These women are going to be around and they are going to be our support system. They will be driving you and I back anf forth to radiation. And Yes the whore too."


" OK " is the only thing I can choke out here


"The whore is out of the doghouse with me as a friend. As a lover - not so much. But I need to let the anger go" He says


"I know - I knew that when you showed me the poem you wrote. I'm glad you've let it go but you have to be patient with the rest of us who aren't on the same point of the road yet and those of us who love you and don't trust the person who hurt you so badly"


still holding my hand "I know - and I can't tell you how that has helped me get to the point I am at with her. I can't have anger and pain hanging over me. THe only way to release it was to forgive her and rebuild the friendship. "


"OK I can try" I say


I get up, take out my contacts and get ready for bed.


I come back out to finish watching this movie that has now crushed me into sobs. He gets up to get something to drink and says to me "Turn it off - its time for bed".


It's not even midnight. Hunh


I say "no it's OK"


"no it's time for bed - this will be on some other time and we can watch it then. Besides I can't ever get through it all in one sitting. "


We go to bed and while we are laying there holding hands and watching "From Dusk til dawn" it occurs to me that we never had this moment since he got diagnosed - we just took it in stride and moved along as if nothing was different or even wrong for that matter - just each day as it came.

I know his cancer is not terminal. In my heart I know it. But there is always that 1% seed of doubt in my mind that something may crop up that will be life threatening. I can't imagine my life without him so this is a scary concept. I tend not to focus on it - I have to stay positive and stay the course in order to keep him positive and both moving forward

Since that night, I have noticed an overwhelming number of movies with thiis concept have been on lately - My Life with Michael Keaton, Catch And Release with Jennifer Garner and Juliette Lewis, God Said Ha! and so on.... Even though I have seen all of them in the past - these are just not films I can watch at this point. Sad because they are all good and struck a chord in me even before this.

Carrol O'Connor has a great line in Return to me. He says "It's the character that's strongest that God hands the most challenges to".

It's the strength of character that matters most in all of us. It's what is going to pull him through this. It's going to be what enables me to help him get through it.

We had a cathartic moment. It was really emotional and exhausting.

But necessary - folks don't bury it! Let it out so you can move forward.

Onward and upward

The whore.

OK - it's been awhile. But the thing is I am trying to make my peace with the fact that he's not angry anymore and has forgiven her for hurting him.

He wants to be friends with her. At least for now.

I know she's using him for the emotional support that she may not be getting from the man she chose to live with and pursue an exclusive relationship with. But my knowing it and his knowing it are two different things. I cannot teach him this lesson. It's one that he has to learn on his own.

Perhaps he won't ever have to learn it or be further disappointed and hurt by her.

As for me, I am making as much peace with this as I can. It doesn't happen over night and I am the same way with my past loves so how could I expect him to be different?

The fact is he is faced with his mortality. I know he's trying to mend fences and un-burn bridges as much as possible right now. He's righting wrongs and rebuilding bridges.

This is what we call a growth period. Some might call it a mid life crisis.

At the end of the day a growth period is when you re-evaluate your life, take stock and make changes.

He started doing that in January when we did his brothers last fund raiser. It's been slowly but steadily changing and improving as time marches on.

All I can do here is love him and let him know that its OK to talk about things - if it bothers me I will address it as needed.

Resignation

I'm changing bf's name to a real one. His name is now Jon.

Tonight, Jon said to me that he has resigned himself to a life of pain. Of course it nearly brok my heart.

I hugged him. I kissed him - but it doesn't stop it. Not like when we were little at any rate.

My mom and I talked the other day. I gave her the updates on his oondition and she said "I need to tell you how proud I am of you. Others in your position might have walked away".

I can't even imagine that. Who would walk away?

And she doesn't even know the worst parts. And you know what - she knows that too. She knows the worst is yet to come and that there are things I can't and won't tell her.

And she's not offended.

Lately he's made the commetary on my making things "about me." Of course I am used to him making things about him, but about me??? hmmmm

I can't even imagine his pain. I hope like hell that the treatment will help alleviate it. In the meantime I am switching up to holistic and esthetic means of treatment in that arena.

Any suggestions??? We start radiation eery day for 9 weeks on Monday and 1 round of chemo every 3rd week.

All welcome!

I need parts of my old life back

I gained 10 lbs. All right?

Since cohabitating, I have stopped activity as a rule and my eating has regressed to an ugly frenzy. While my portion sizes have not increased, the types of foods have changed and not necessarily for the better.

I am changing up the food types this week. There has to be some changes anyway because his treatments start next week. I need to bulk him up a bit.

I saw my dermatologist last week and got new scripts for the same meds andn started a new allergy pill that seems to be working.

I am going start doing some kind of activity this week as well.

We have 2 parties on the calendar right now - one in April and one in June. We have a communion scheduled for May as well.

In spite of the cancer, we are trying to keep our schedules normal. I am still trying desparately to turn this house into a home for us. At least one that is comfrotable and all of that.

My week is already shaping up in the busiest of all ways. I have 2 lessons tomorrow. I have 2 lessons on Tuesday and the third lesson is going to be a dress rehearsal for a performance. Wed I have 2 lessons and the performance. Thursday I have 2 lessons and Friday I have one lesson. Saturday there is a gig that I may sing it - we'll see. It will depend if he remembers that conversation or not.

Trying to keep things "normal" is hard since there was not established "normalcy" in the first place. So I am going to establish some now.

First things first. I am putting a "plan" in place. This plan will not really be like last years plan. But it will include facets of that plan. The categories are:

Health - I need to see my ob/gyn - it's past due. I need to have my eyes looked at as that is coming up soon. I need to see a dentist and start getting my dental issues addressed. This weeks commitment is:

• I am going to do another internal cleanse starting tomorrow
• I will add activity 3 times a week
• and drink 48 oz of water every day.

Relationship - We still have a lot to do here. He's getting comfortable with this new life we are building but backwards slides are still occurring albeit less frequently. This week:

• I will stand up for myself more when I am right.
• I will pick my battles more intelligently
• I will make my needs known better.

Care taking - My job here is relegated purely to the home. I need to make sure that there are all the componants available by the end of the week for the start of his treatments. This week's goals:

• I need to stock up on Whole milk for bulking him up.
• We need lots of fluids in house to keep him hydrated.
• He needs to get releases from the doctor for accupuncture and massage therapy.
• Medicaid

Work/ Career Primary ( PM) - My new boss rocks. She is wonderful. I have my first one on one with her today. This week:

• I will wrsp up my ;ast inflight orders.
• Keep the project flowing
• get my act together as the POC for a new software program.

Work/ Career Secondary ( Music) - I have to seriously get my kids working towards the recital in June. I have solo's of my own in May. I have work for my man that needs to be done. This week I will:

• Practice "in my life" and "Lady Madonna"
• Work on my Haydn solos
• Keep all kids for NYSSMA focused and on the right track
• Get all post NYSSMA kids focused on the June recital.
• Research New Business opp with best friend.

Spiritual - This week

• I will schedule time for a counseling session
• Schedule a second speaker for spiritual values day
• Attend church this week.

Financial - This week I will

• Get my car registration renewed
• Get the rest of the car insurance paperwork straightened out. We just "merged" our policies.
• Pay back the benefactor who gave me that last 100 dollars that I needed.

Home/ House - This week I will

• Keep up with my chores
• Clean out file cabinet.
• Start an inventory of what needs to go to storage.

This is just a sample of what I plan to accomplsh between now and next Sunday. I will keep you posted as we move forward. I really need some semblance of normalcy as well some forward movement for us as well. I don't like to be naggy but I do need to make sure that things are happening and NOT at a glacial pace. You know how THAT thrills me.

If I start taking care of me and my needs better, he will be in a better place too. in the long run.

Life is exhausting. I need a vacation.

I've had a little vino and am starting to chill

Yes my readers I was really stressed and a bit pissed yesterday.

What also happened was that I didn't sleep and I was sick most of the night.

I awoke feeling worse for the wear. Lack of sleep and a high pollen count did me in. That and being angry.

Anger is a wasted emotion to dwell on. I"ve seen what it can do to people. I was not about to let that get inside me and tear me apart.

So he woke me up to tell me was leaving to do some errands including my banking. I got up, snapped out of it and went to work.

I decided the night before that I was going to drive out to my accountant and deliver paperwork. I left about 11 and was home about 12:30. I worked for an hour and had to lie down. My allergies were kicking my ass.

While I laid down for a hour I thought about where I was going to get the last hundred dollars. I had no ready solution at my fingertips. But I did get suitably angry at myself. First that I put my priorities last and second that I let him treat me badly.

The fact is the whore really isn't a problem. I don't really give a crap about her but I dont' want her rubbed in my face. The fact is she still thinks of him as hers. She doesn't want him, but she doesn't want anyone else to have him either. At the end of the day, I still don't care about that either - that's her problem. I am just a wee bit put out that I am being told that "we" need to be nicer to her. I don't see why I have to. Call me petulant, call me unreasonable, but I am just a bit frustrated because of all the hell I've been through at her expense - and she IS NOT EVEN AWARE OF IT.

So - the root of yesterday's post mostly was about that. The financial thing - yeah it's a headache. Yeah it sucks. Yeah it's my some of my financial things behind the eightball, but if he doesn't have a legal vehicle, he can't work. If he can't work, we don't eat. So the math at the end of the day goes straight to that. I will put my needs first more frequently now.... I have to for my own sanity.

A friend asked me today how did I handle the down time while waiting for someone to make a major life altering decision.....

The truth is, I am still waiting. My situation is weird. Only because he wants the grown up relationship and the perks that go with it. At the same time, he's reluctant to give up the life style he had. Baby steps get us closer every day.

My advice as a rule here is, you have to know that you really want is worth the waiting and the effort. And you have to be willing to walk away.

I came home from teaching tonight and dinner was waiting for me. It was delicious.

Now I'm heading for a bath and then bed.

Night!

Pre-existing conditions.

There are times that I get so mad and so frustrated that I want to hit something and hit it hard.

Today was one of those days.

This morning, my bf went to the doctor and upone arriving home asked me to call Katerina and see if we can "borrow" space in her driveway for his car.

The short version is he has some financial issues that he needs to straighten out on his car that predate our domestic partnership.

I didn't react immediately - as characteristic of me - and sat on it for while. I left to go teach with him recording tracks for "Something" by George Harrison.

In the car, I took two important calls, one fromm our friend who owns an insurance company and another from a friend who works at the DMV. Their advise echoed one another.

There were only two options that made sense. First - pay the civil fine and re-do paperwork ( preferable ) or Second - turn plates and reg in and off road the vehicle til July ( not preferable).

I calculated the exact number financially based on tomorrow and reviewed our ( mine) assets.

We can do this the preferred way. Unfortunatley it puts a crimp on some financial settlements that I need to do, but he needs to have a vehicle on the road and functional or I CAN'T do what I need to do.

So I arrive home to hear him giving the house number I use for business out. He hangs up the phone and says "Yes. From now on, we are both going to be nice to the whore."

I must have made some kind of facial expression that was less than affirmative. He said "it's the right thing to do".

I can only assume that my facial expression didn't change radically. So he says "you know - turn the other cheek and that kind of thing...."

My only commentary is " So why are you giving her my business number and why are we being nice to her after the beeotch she's been for two years???"

"We finally got to the place where we should have been awhile ago. We should onl have been friends and nothing more. "

"Yep OK fine whatever. " Not convinced.

" you Don't have to get there today. just know that's the goal" He says.

" fine - you need to listne to me for a minute. " proceed to tell him about his financial issues.

He kind of freaked out because he didn't want me spending the money. I get it. I understand that.

Instead of treating me nicely or normally - I got treated badly thereafter - then wonerful - then bad - then good.

It almost felt like he thoght less of me for helping him.

This happens all the time. It's usually embarassment that causes it.

He recognized that he was doing it, but was unsuccesful in correctng for a few hours.

Seriously - I have spent an enormous amont of money to date. He needs to chill.

So do I.

The trials of the living

A mutual friend was visiting today. She got married in the big "wedding" we went to in November. She has "retired" after 25 years in the insurance industry.

A slight backing up.... my best friend got notification that there are some complications with paper work and his vehicle. I had suggested that we put him on my policy anyway awhile ago as there is a mulit car discount as well as an age discount - so this would be a good thing. Now it's actually a necessity.

So while our friend was here, I called my agent and inquired about what was required. I get the listing of necessary items. She laughs and asks if we are getting married. He looks at me, I look at him and he says "Nah - it's cheaper this way!".

Now if Mrs Jackson hadn't sent me her email yesterday about the difference between men and women - I would have actually read into that.

Generally speaking this entire health situation has put so much in a very specific perspective. For starters, I have noticed that I am really not caring for myself the way that I once did and at the same time I am doing more of it than I used to. It's in different areas of focus.

For example, my exercize - all but gone. But I have read up on how a caretaker should be dealing with things for themselves.

My taxes? Not done yet. My music? Well all I can say there is that I just performed an aria ( Una Voce Poco Fa) from the Barber of Seville and didn't give a crap whether or not I knew the words correctly or not. And yes I blew a couple of words but the vast majority were dead on and because I didn't give a crap the entire thiing was brilliant. But I'm not working so hard at it and that's not good. But my piano skills are improving - go figure.

Reading - not as much my normal stuff - much more on holistic healing, caring for the caretaker, caring for cancer patients, dealing with illness etc.

I have some legal issues I am going through - nothing bad or major. But it did take me to my friend and attorney. He performed in the concert with me yesterday as well. He is going through his own array of shit too. He and his wife are separating after 35 years together. She came to the performance yesterday and he sang "The way you look tonight". I was touched to be honest. There is still love there between them. It makes me happy and sad for them. I hope they can work it out - it's an awful lot of time invested. We talked a bit about that, covered my issues, more minor than I thought and moved on.

My house needs shaping up. We have put a lot of things on hold pending tests and the like that the normal tasks of living have built up a bit. Hence the reason my taxes are not done yet.

My skin, while not as bad as it could be, is not great. I have made the doctor appointment necessary and will see them tomorrow.

At some point normal will kick in. I just do not know when.

I wonder if you can get a tax extension because of cancer......

Growth

Like plants, people grow at different paces.

I always laugh when I hear statements like "One day you wake up, you have a wife ( husband,partner whatever), kids, a mortgage and a job. And you wonder how all this happened when just it seems like yesterday that you woke up in a puddle of your own puke after a 3 day bender".

But it's kind of true. In a weird way.

I had an epiphany the other day. During my quiet introspective that I went through this week, I reached out to a friend. She gave me enough pause and enough to think about that I came to the following conclusion.

My best friend has grown a lot - tremendously in fact, despite his unwillingness to want to. Things he does for me, he didn't do for others in his past. Things he talks about with me were topics that were not approachable in his past.

He noticed my introspective and didn't try to intrude, but did try to being me out of it. While it was entirely about him, I wasn't angry or upset and he did nothing specific to cause me to be this way.

I received a call from a good friend today. She advised me that her husband had done some research on the cancer and treatment and wanted to let me know that even in an advanced state, it carries a 90% success rate after treatment. He didn't want me to worry about losing him. I was touched. That was so incredibly sweet of her husband to think of ME that way. He didn't want me to worry and he didn't want to keep upsetting me or my best friend by asking the same questions.

Not that I mind - I don't.

He sent out his notification for his upcoming gigs - it's light month for obvious reasons. But at the bottom of the note - to everyone in the world who knows him - he wrote the following statement:

"A special thank you goes to JoAnn, Denise, Lynne, Sandy and Kat and of course My Contessa for their love and support."

Now I saw it. but I didn't react right away. I went out taught a lesson and reflected on it. He's not prone to statements like this one. Certainly not public ones. So I didn't react right away.

When I returned home, he asked me if I had checke my email. I said I hadn't and sat down to look at it whilest he hovered over me like a kid on Christmas morning. I opened and read it. Right in front of him. I didn't know what to say. But when blinked back my tears and looked at him I said "Thank you Sweetie". It wasn't necessary but I am not telling him that. This was big for him.

I know he's grateful. He thanks me all the time. He's grown so much since this illness. I don't want to jinx it but I think out of this horrible disease may actually come some good.

Growth is hard. I am growing too here. and not the 5lbs I've gaine in the past week either. I learn things about him every day. I learn how he reacts each day and what triggers him and how he copes with tragedy every day. I learn things about myself too, like when I became introspective - I didn't try to pretend I wasn't. Normally I would. Ask anyone who's lived with me - they will all tell you...

Every cloud has a silver lining. I may have just found one....

The halfway mark

I think Rosie Perez said it best in White Men can't jump....

Sometime you win, sometimes you lose and sometimes, it's a tie.

Every day brings new knowledge to this relationship and it's willing and sometimes unwilling participants.

Surprisingly - or not - depending on how you look at it... I have been the unwilling one in the last few days. Not that I am leaving, or anything like that - it's nothing that bad - it's more like I am less willing than willing but not unwilling...

OK this took a weird turn.

But I know you KNOW what I mean.

I came home last night after a few days of being less willing to discover that he wasn't home. It didn't register right away that I didn't see his car.... I actually walked back down the drive and looked again. I scratched my head and thought

"Well OK but I wouldn't be out socializing with no teeth - but thats just me and my vanity I guess"

The fact is he kind of looks and sounds like the bumble from Rudolph. I don't mind - it doesn't make him less attractive by any means. But his speech - not surprisingly again - is affected. MOst people don't realize that teeth and palette and lips and everything going on in the mouth area affects your speech.

He called to tell me that he went out east to check out the location for late month private party he is working. He sounded good. He needed to be out and about a bit. He told me has planning to swing by his buddy's Open Mic on the way home and just cover some business as they do some gig's together. He planned to be home around 11 -12.

I decided to take advantage of the time by talking with a mutual friend who has the benefit of a lot more years both on this earth and knowing him. It turned out to be a smart move. A lot of misconceptions on both of us were set to rest. Some hurt feelings were reconciled. Talking with her eased my mind considerably.

He walked in around 2. I was dosing in bed. He started cooking - don't ask - this happens every time he comes home from that open mic - he makes breakfast for himself. I heard him swear in the middle of all of this and stumbled into the kitchen. He apologized for waking me, then told me about his night. His buddy send regards - remembers me fondly from the ALS benefit 2 years ago ( I know he was ther but that day was seriously a blur!)... told me about the place where the party is, he finally located his webdesigner - that sort of thing. I leaned my head against the doorway and knocked it harder than planned. He looked at me and turned me around and put me back to bed saying

"I'm going to eat my eggs and then come to bed. If your still awake and want to - we can watch a movie?"

I smiled as I laid in bed. I know this sounds really goofy, but he's been sleeping on the couch recovering so much lately that I have missed him. He's not taking the Vicadin anymore. He's sleeping more soundly. He needed the rest and though I offered the bed, he was happier on the couch so he could channel surf without waking me.

Shortly after he came to bed and we searched movies in our on demand channels. Being the insane movie people that we are, I subscribe to everything thats subscribable. We found Catch and release and since neither of us saw it all the way through, this was a good choice. We were both really enchanted by it. What a charming movie and a wonderful sound track. Which reminds me - I need to buy that! I think I will check on Itunes today.

As the movie ended and I drifted off to sleep, I was relieved to feel like my old self again,re-connected to the man I love. Lord that sounds nerdy. But it's true. I also have to say that when he was talking about me to someone else tonight, he was re-connecting with me even though I wasn't there. It made him want to come home and nurture the relationship a little bit even subconsciouly.

I am sleep deprived today. But in the best way possible.

Am I being unreasonable?

I know things have changed in my life really really - well really fast in the past 2 months and change.


The fact is Since 1/17 my life has been really different. So much happened so quickly that I know that we both are just reacting as it comes.


Some interesting realizations have crept up on me. Things like, he is exactly the same now as he was in his 20's in many areas.


I now truly understand much of what makes up his insecurities. And his relief from them only feeds and fuels mine further.

I awoke this morning feeling tired, frustrated and generally out of sorts. I wish it could be work, but that's no longer the stresser that it once was. OH it still has its moments but in general, not so bad anymore.

I am frustrated because I feel unappreciated. Oh he thanks me for helping, but I feel like he's just that much more appreciative of the MILLIONS who call to offer well wishes in response to his dramatic emails and text messages. However they aren't the ones doing the hard work. I am. So am I unreasonable about this?

Meanwhile - I feel like an ass for even ALLOWING that to cross my mind - why??? because this is his coping mechanism and I should not be resentful of that. And in truth its not the resentment to it that bothers me.... its that this takes precedence over all the crap I do here.

I have a wise friend in the south. Jules and I spoke today. She mentioned an interesting concept here. She believes that he has to handle these other people that way because he doesn't believe that he will get the support from them without working for it. So he treats them better because he knows I won't leave him.

It's the perversity of human nature. Meanwhile I have become somewhat quiet and withdrawn and he has noticed and doesn't know what to do. I can't rally right now though I am trying to. It just frustrates me. And I know I am being unreasonable... but I am missing a lot of the things that we used to do together. The uncompromised time we spent together- without his phone pinging constantly with calls and texts.

Things are off for us right now. Really really off. I understand that. I understand why. I know he's in pain.... I know he's not capable of eating regular food right now. I get it. He's not happy, he's more depressed. I really understand. I just need some understanding too. I don't want to be just a "room mate" and that's what it feels like right now.

What I want most is for him to be well again. I want him to be healthy and well and hopefully wise - r....

It can't happen soon enough - every day that this goes on I worry that the cancer spreads further.

Going to bed mad vs. Fighting it out

A long ways back, I did a post on going to bed mad. And how you shouldn't.

The Digital Father did a podcast about happy marriages ( Episode 30) as discussed with people married 50+ years.

Debunking the ever popular "Don't go to bed mad" myth actually made sense. Sometimes you have to in order to think with a fresh mind.

I bring this up to illustrate what happened last night.

I spent the better part of my afternoon - about 4-5 hours specifically - setting up a wireless router and network in our home so that both his desktop and my laptop could connect with the benefit of few to no wires.

It was not as easy as Cisco would make it seem, however it was less complicated than I originally had envisioned.

That not withstanding - I still experienced a number of hitches that someone who works with routers -both wired and not- every day should have expected. Ironic that I am the voice of reason and troubleshooting when it's me and a client but when it's just me??? I'm a freaking lunatic who ate the majority of a chocolate bunny during the 5 hours this projecct entailed.

So it should come as no surprise to you that when I returned from my rehearsal and was reading email from his own computer for the first time and it shut down in the middle, the anger and frustration that went on. I was trying to work on it and simultaneously he's fighting to connect. I offer him my laptop in the interim - but no. I mention multiple times that I am addressing the issue. He continues to huff and puff, sigh, curse, and bitch.

I finally shut everything on my laptop down, setup his email and say "just use mine for now - I can't fix it while you are hammering away".

I go to bed.

He makes a snide remark about half a job. I said if he thinks 4-5 hours is half a job I would like to see him do it since he was out playing all day.

He walks in and immediately changes his tune. Now he's mister nice guy. Lots of "I Didn't realize that" and "Obviously you are as frustrated as I am but deal with it better" and crap like this.

Somehow - with no actual apologies - we mend the fence.

By the time I went bed, I realized that we fought it out to a logical conclusion though it was not a realistic problem. It was frustration on both sides.

But it made me laugh. For me - it's better to resolve it right away - making me wait leads to not at all. Usually.

We have had some instances of some major fights that wait for the morning. Some are lined up out in the hall STILL waiting.

Well - these 50+ year marriages - they didn't say WHAT morning it had to wait for now did they?

It's good advice though. I just suggest you pick and choose when to use that.

Keeping things normal

An interesting topic came up yesterday.


He came home from the annual St Patricks day parade a couple of towns over.... ( Please do not ask me the rationale for why they had this on March 28. It had to do with it being the seat of the Cathloci Diocese and Easter... you really don't want to know). He had been with his best buddy from HS and some of the "kids" ( early 20's ) that he hangs with from the restaurants he works in over the summer... They were durnk - duh. He made sure they got a table and some food in their stomachs when they all decided to get mushy on him about his illness.


He was, for the first time, bothered. On the surface for those who don't know him, it wouldn't have appeared bothersome but the mere fact that he mentioned it to me at all means he was bothered by it.


Once finished with his story - he told me that he only told the people that wouldn't fall apart on him about it. Then he asked me why I didn't fall apart.


I admitted that I had, I just wouldn't ever do it in front of him. He was surprised. I'm generally known as the mushiest of all of them. So the fact that he hasn't seen it at all really struck him. So I told him about Mark and his esophagial cancer. He knew the story, but had forgotten.


The fact is, Mark told only 2 people he was sick outside of his immediate family. For this very reason. He knew he was terminal and he knew that there was no way he could handle everyone falling apart on him. So he made sure his family and best friend didn't share with anyone. Until he died.

I retold this story - and my best friend stood in the hallway, jacket still on, and said "I can't cope that way. I need to talk about it and get support from others".

"I understand that and that's what makes you different from Mark - though you are so similar in many other ways. Whatever you need to do to cope in this area is fine. Talk about - don't talk about it - just do what's best for you and not worry about anyone else." Was my reply.

"I am the luckiest man in the world. I know the best people. Starting with you. The whole reason that this situation is actualy tolerable is that I wake up here every day. " He walk to me and hugs me long and hard.

I am speechless ( YES ME!). My eyes well up with tears. I choke them back so he doesn't see them and I reply:

"Yes. You are indeed lucky. For not only do you know the best people, but they have the priviledge of knowing you. And I am blessed to love you. "

You can't win all the time

I had my "best friend bullshit-o-meter" installed about a month ago.

This is the neat meter that enables the woman in his life to determine what is fact and what is BS.

His younger sister alerted me to it during the crisis of both cars being dead at the same time. I mentioned that there was something wrong with his odometer and she held up her hand and said " I refuse to listen to anything where he and cars are concerned. He does not and will not take care of them".

Hunh.

That's odd - because I recall the conversation about 2 months ago where he said he still had time before he needed an oil change.

(Picture me scratching me head and looking confused)

Then she said - "Do you have your best-friend-bullshit-o-meter tuned up?"

That's when I realized mine must be outdated as I had it installed about 10 years ago but because we broke up and stopped speaking for awhile I let the updates lapse.

So I had it tweaked and updated and tuned up and all that.

And Guess what???

That's right.

It works.

Get this.

We both had business to conduct last night. We both expectd to be home by 9. He wanted an early night as he had an MRI the next day.

I should warn you that he has a claustrophobia thing. So he went ahead and checked out the machine and the room the day before to make sure it wouldn't drive him too batty. He knew it was closed but decided to go ahead with it anyway.

I arrived home at 10 and he wasn't back yet. Not surprised that he wasn't home yet, I went about doing what needed to be done. Next thing I knew - it was 1AM.

I call to make sure that he isn't dead. He was on his way home. He ended up finishing his business and played an impromptu gig that payed. Not too shabby.

He got home and it was clear that he had been drinking. Not too heavily but heavily enough. I pretty much predicted at that moment that the MRI wasn't happening.

This morning I wake up and the first thing out of his mouth

"I'm not having the MRI today"

Duh. Really?

"why not?" ( I already know)

"The Claustrophobia thing" he says, not looking at me.

come on now - who are you kidding?

"I thought you were going to suck it up and do it anyway? What changed" ( the vodka that's what)

"I had a dream about it." (At your age - this is the best you can do???)

"Well you need to call and reschedule it - let's do that now. It needs to be done prior to the radiation. " I say - handing him his phone.

"Yes - I"ll do that now....." He gets up to leave

Following him.... "Why don't you ask if you can be medicated before putting you in - valium or something"....

"OK good idea...." Not that many places to go within the house.....

I start working and I hear him on the phone.

The next thing that happened was he spent the day in bed.

I guess that Bullshit-o-meter works pretty well.

Let the bad times become the good times

"When I was younger man I hadn't a care
Foolin' around, hitting the town, growing my hair
You came along and stole my heart when you entered my life
Ooh babe you got what it takes so I made you my wife"

The man I am in love with was this guy. Describing him as Peter Pan would be an understatement.

Since then I never looked back
It's almost like living a dream
And ooh I love you

He has looked back. Many times. He spent a lot of dwelling time looking back. Now I think he's starting to get off his butt and possibly remove his head from it. His life is improving ever so slowly because it HAS to.

You came along from far away and found me here
I was playin' around, feeling down, hittin' the beer
You picked me up from off the floor and gave me a smile
You said you're much too young, your life ain't begun, let's walk for awhile

There is a lot of truth to the old adage, The best husbands come from reformed playboys. I know this to be true of him. Ever so slowly I see the turn away from old destructive behaviours. I see new and stable ones taking their place. There is never a more apt description than this verse. That includes the drinking, the plaring around, the feelin down... all of it.

And as my head was spinnin' 'round
I gazed into your eyes
And thought ooh I want you
Thank you babe for being a friend
And shinin' your light in my life
'cause ooh I need you
As my head was comin' round
I gazed into your eyes
And thought ooh I want you

We started out as friends. I believe that some of the best relationships started out that way. We have this connection, it's in each others eyes. We but have to look at each other and we know what the other is thinking and it was ALWAYS like that. And it continues.

Thanks again for being my friend
And straightenin' out my life
'cause ooh I need you

Honestly - those of you who know me - you know this is exactly what is happening. This part of the chorus. He tells me every day how much he appreciates me.

Since then I never looked back
It's almost like livin' a dream
Ooh I got you
If ever a man had it all
It would have to be me
And ooh I love you

One of my best friends, Elle, said the words "Let the Good times be the Bad" to me after her mom passed away in August.

Her mom told her this before she died. About marriage and relationships.

And if there was ever a couple that would know a little bit about this, it her parents.

What she meant, in essence, was that if you can support each through the bad times the good times are a piece of cake. When you look back on your life as a couple, you look at the bad times as well as the good because those are the times that you grow as a couple.

You have to grow individually but also together. It's a tough balance.

This morning, in the midst of all the negative stuff that's been going on lately, I awoke at 8Am to a song that means a lot to us and one that I love.

The irony here, I was in the middle of a horrific dream. Waking up to this song, with him standing in the doorway, proud of himself for getting his computer in and setup AND playing my favorite song, was a beautiful start to my day.

See here's the up's of late.

He told me the other day how lucky he was to have me and how good about himself I make him feel.

Then I spent some time with his niece who told me how happy she was that he had me in his life and told him not to screw it up.

He cooked me dinner twice in 4 days and did the dishes and tool out the garbage without being asked or prodded.

He started re-arranging cabinets and closets.

He brought me lunch.

He picked up music for me because he didn't think I would have time.

And most importantly, he is starting to become more optomistic. He admitted to being depressed and I gave him the job of re-arranging cabinets and closets.

He embraced it so succinctly that he is up and at it every day. He set up playlists of music I will like so I can listen while I work. He gave me a CD of all his personal original tunes.

And he wants to start to get to know my friends and my family more.

"If ever a man had it all
It would have to be me
And ooh I love you"

I never thought a life threatening disease would change things so positively for him and us. I am thankful every day and consider myself to be blessed. It's not been without it's thorns but I wouldn't trade it.

I'm scared

Everyone keeps telling me how strong I am and how I can be strong for those that I love. Or in this case - the one that I love.

While I know this to be true.... each day comes back with information that strikes fear in me. I won't communicate that to him because he's already scared.

He now needs to have oral surgery to remove some of his top teeth. Due to surgeries in his youth for a cleft palette, he has some teeth that were weak but not detrimental. Given that radiation will increase the speed of decay in bone more specifically teeth, he has to have a few removed.

Which means that has to happen immediately as the radiation cannot start until that is healed. Meaning another week or two.

I don't think I need to tell you that this chink in the chain is not the greatest news because it means prolonging the arrest and shrinkage of the tumors.

The good news is still that nothing has spread to date.

We are busy working on Medicaid and I am researching the possible side effects and charts and stats and cargiving info all the while.

But that doesn't erase the fear.

I believe in the power of positive thinking and prayer. Information always gives me that option so I research on. I am only now communicating my fears to others as I do not want him burdened with it.

It's funny, my friend Mark passed away of esophagial cancer 4 years ago. He told no one that he was sick. I kind of understand why. He didn't want people to treat him differently and he didn't want to be constantly reminded by people falling apart around him.

Of course that is the complete opposite here. He texts his entire phone book with the news and sends out email blasts to the rest. It makes it easier if he has to tell it fewer times. But on the other hand - he does like the attention.

To a point. When it comes time to be serious and beyond the fans saying "oh no - we'll say a prayer" and the real work starts with driving to and from appts, getting them on the calendar, making sure we have paperwork, the right foods, drinks, meds etc.... he doesn't want to deal at all.

Can't blame him there, but it is still necessary.

Meanwhile, I have this thing where I feel that I need to make everything good and happy and there is no fighting and strife and tra la la.

So when he borrowed my car to go to band practice last night for 2 hours and came home 5 later with no call or anything, I was pissed. Even more to the point, he had been drinking and driving. My car. I was so angry I couldn't sleep. At all. I got 2-3 hours at most and had to wake up at the crack of dawn to move it as he had to park it on the street because my spot was taken at that hour.

Did I pick the fight - no. It wouldn't have mattered if I had - he was drunk he wouldn't have remembered it anyway. I will calmly mention it later but the fact is he was being inconsiderate. I recognize that he wanted to go see one our friends to tell them the latest in person, but evidently his finger broke or his mouth or the freaking cell phone and he was unable to call and let me know so I wouldn't worry. Nothing I could do about the drinking as I wasn't there.

He knows that has to stop - that's the good news. He is going to get some help and treatment for that as well because once the radiation starts - that has to go. Can't do both. It's like pouring fuel on a fire.

To be fair given the status of things and how fast they are changing - I am not sure that I wouldn't' be drunk most of the time... I just wouldn't try to drive or even operate anything heavier than the remote. I don't give him a hard time with it unless he does something stupid like that.

So this blog, at least for the short term, is going to become a bit of a vent/rant/express how I am feeling about all of this. I ask you to please be patient with me. I haven't done the caretaker routine first hand in about 5 years.... I'm out of practice.

And I'm still scared that I could lose the man I love.

Worst case scenarios and other disclaimers

I work in profession that regularly has to rely on outside companies to do work for us. That requires my company to regularly have to CYA.

In laymans terms "Cover Your Ass".

So, it came as no surprise to me that CYA applies to ALL professions in some form or another.

In the medical field - they call it "Worst Case Scenario".

I think I like that term better - but not when it applies to someone I love.

So - the-worst-case-scenario that we got from the Endoscopy appt yesterday was:

"You may lose your voice and your ability to speak and sing. We can do a trachyotmoy and give you a speaking box to communicate with".

I freaked out. I went to bed.

Quite literally - I got up and went to bed. I had timed out.

Earlier in the day, when leaving to GO to this appt, I was already half brain dead and he kissed me on top of the head and told me to stop worrying.

How the hell am I supposed to do that??? HELLO. HAve we JUST met????

Then that disclaimer comes in on the heels of "it hasn't moved or spread. Everything looks exactly the same"

Listen, I don't want to hold the outcome of this over anyone's head. This is no one's fault. Certainly not the doctors who are so willing to help a person who cannot pay for his treatments.

I just didn't like that answer.

We started a file and he made copies of everything and is working through his sister on a second opinion through Sloan Kettering. We are blessed that she worked there for so long prior to her career change.

The Radiation will start next week as planned since more than likely that has to happen anyway.

I am praying that there is a surgical option rather than a chemo option at this point as well.

So there is the latest. I can't tell you how much I appreciate everyone's support and love. It means the world to me.

The big "C", research, fear, chemo, radiation - to name a few keywords....

The Big "c'.



In my parents' day, this was statement was usually uttered in a stage whisper. Accompanied by the sign of the cross or "bite your tongue" or spitting depending on your nationality / religious beliefs.



Cancer.



It's amazing to me. When I hear about people who have it, I always think "They are tough and fighters - they can beat this - the success rate is so much higher today than ever before."



This one is too close to home. In fact - it's IN my home, though I am not the patient.



And I can't say those words to myself. Hence the fear.

Fear is generally irrational and not grounded in reality or logic. At least not in the beginning.

Emotionally - I am afraid of losing him to this disease. I am angry that he has it, angry that he let it go for two years untreated and angry that it's in the throat which is his primary means of work. I am scared that we an't do enough fast enough to arrest it and treat it. I am afraid of the side effects. I am afraid of being without him.

That said, I started researching Medicaid, the American Cancer society and I also started talking to my holistic healer who has battled breast cancer and survived through a combination of traditional means ( she did the radiation and chemo treatment) and through holistic treatments as well.

I am all intentions of re-vamping the dietary plan we have been eating on ( largely consisiting of take out and vodka.) and bringing more natural and organic foos into the house. More fruits and veggies. That sort of thing.

We have stepped up the closing down of his old house. I don't want the threat of that hanging over us while we are in the middle of a bigger situation. So that is being stepped up.

We have a lot to do and not a lot of time. The official diagnosis was Thursday. This tuesday is another test that will stage it and then radiation the following week and chemo the week after that.

I am fighting to get a second opinion simultaneous to the radiation. I think before anyone puts poison in their body they should absolutely get at least one more opinion. Additionally I have started bringing in the moisturizers for his skin as the radiation is very painful on the skin and hard on it overall. Given that his immune system is weak I have asked my holistic healer to please bring a bottle of the probiotics tonight to help put the good bacteria and help build him back up.

As I said a lot to do and very little time to do it. My stress level is higher today than other days but I also in major need of sleep. I am also needing to keep busy which I am doing by cleaning and organizing.

I need all your prayers and good thoughts here.

Music of my heart

You'll never know, what you've done for me
What your faith in me, has done for my soul
You'll never know the gift you've given me
I'll carry it with me
Through the days ahead I'll think of days before
You made me hope for something better
And made me reach for something more

My best friend has taught me a lot of things. It was ironic. I was re-fitting a slip cover to the couch last night and he was cooking dinner, and we were just idly discussing the documentary we had been watching about de-criminalizing illegal drugs.

It occurred to me, in that moment, that I have never watched so many documentaries as I have since he came along. I've enjoyed and learned tons from most of them.

With that, I have noticed that I have seriously given thought to, and re-formed my opinions on many social and political issues of our time. Of course, I haven't gotten a personality transplant or anything. As I have always done, I see the other persons point of view, but it doesn't necessarily mean I agree with them.

We have full discussions about the state of our union, religious views, drugs, prostitution, rape, the prison system, slavery, prejudice, gangs, the homeless, medical insurance and socialized medicine...

Seriously - these are not conversations I tend to engage in. Not never, but not wanting to do battle as a rule, I stay away from these topics. We don't do battle though we don't always see eye to eye. The thing is I have learned that many of my opinions are based on my own personal fears.

You taught me to run
You taught me to fly
Helped me to free the me inside
Helped me hear the music of my heart
Helped me hear the music of my heart

You opened my eyes
You opened the door
To something I've never known before
And your love, is the music of my heart (music of my heart)

He has also taught me to free up the music in me and not be locked into the one thing I know how to do. Having made the observation that I am afraid to disappoint him and embarrass the seasoned performer, he has not pushed me hard. However, he also observed that every single thing he has asked me to pick up and learn I have picked up and done.

To my surprise, I am actually becoming a much better musician because of him. I am certainly more well rounded in this area and I am retaining my classical side as well.

Our voice blend like we were born to sing together. I am ever surprised when I hear us. It always makes me smile when he asks me in social settings to grab the high harmonies and please sing louder!

You were the one, always on my side (always on my side)
Always standing by (always standing by)
Seeing me through
You were the song that always made me sing (made me sing)
I'm singing this for you
Everywhere I go, I'll think of where I've been
And all of ones who knew me better then any One ever will again

I'm told I'm a strong person. While I know that that is fundamentally true, I don't feel that way most of the time.

I feel in many ways, stronger because of him an sometimes weaker because I rely on him. I don't mean these things in negative ways. Having him at my defense, having him need me and vice versa- these are the things that go along with any relationship of substance from friendship to marriage to any partnership. I know this, but it's strange. Until it's the right kind of partnership with the right person, those things feel wrong. With us, they come almost naturally. Without a second thought.

You taught me to run
You taught me to fly
Helped to free the me inside
Helped me hear the music of my heart
Helped me hear the music of my heart

You opened my eyes
you opened the door
To something I've never known before
And your love, is the music of my heart

There are aspects of this partnership that I love and wouldn't trade and some that I miss from before. Though I have faith that all will come right in the end, for the time being things are going just fine.

He has taught me so much about the person I was, the person I am and the person I am becoming. I feel that though things are murky now they are clearer than they have ever been. I feel that the highs and lows of the past year, while harsh and difficult, lead us to this place. and for a very specific reason.

What you've taught me
Only your love could ever teach me
You got through when no one could reach me before

'Cause you always saw in me
All the best that I could be
It was you who set me free

He forced down that wall when no one else could. He broke the barriers, and forced me, gently, to see that I was capable of love. He taught me that I had to start taking better care of me and not necessarily sacrificing my happiness for someone Else's. OK - I haven't QUITE mastered that last one but here's to effort!

You taught me to run
You taught me to fly
Helped me to free the me inside
Helped me hear the music of my heart
Helped me hear the music of my heart

You taught me to run
You taught me to fly
Helped me to free the me inside (me inside)
Helped me hear the music of my heart (music of my heart)
Helped me hear the music of my heart

You opened my eyes
You opened the door
To something I've never known before
And your love, is the music of my heart
Music of my heart
Music of my heart
Is the music of my heart

I write this today, because after 1 year, he has finally been to see the doctor. He has a mass pressing against his carotid artery and it is causing him enormous amounts of pain an some more alarming side affects. He has had it biopsied and Tuesday we get the results.

Though I am trying to remain positive and not jump to any conclusions, my mind does wander into that dangerous territory of "what if" once in a while. The thing is, from a purely selfish point a view, I haven't had him long enough. I'm not ready to let him go. If sheer acts of love and will and positive thinking can do anything at all - I'm all in. In fact, now that I have put it down on my blog I think I can let go of that forbidden place and completely focus on him being OK. Needing minimal treatment. Staying around.

He mentioned the other day, that commitment is committing to do the hard day to day work in addition to the big things. The problems of the living so to speak.

I am worried. I am prayerful. I am thankful.

He's the music in my heart.

The parental units

Someday I want to read the mom handbook.



You know - the one that doesn't necesarilly TEACH you about how to raise your kids, but the one that all parents use expressions and end with the tag "Well, that's what it say in the parenting handbook"



Or how they behave for reasons that are eons old. Handed down generation after generation since Adam and Eve had THEIR kids - Cain and Able.



I can actually sort of see how that one went to be honest. Two boys? - you know the younger was the favorite. You also must know that in addition to that, the grief those boys gave their folks about being kicked of Eden must have been hell....



Which explains the need for parents to want better lives for their kids. A worthy goal to be sure.



The prodigal son story also truly explains the favorites bit. It's fairly self explanatory.



Having said all this.... Last night My best friend's mom and sister came to his gig. On his break. at 10:30.



I am thrilled that they are there for his sake. Not entirely comfortable for my own - but lets leave that out of it.... for now.



Mom makes a beeline for me and directly asks me how the living situation came to pass. I neatly deflect it and ask about brother. Phew..... Sis is taking up best friends time.... good all around. I compliment mom's parenting by telling her that he's wonderful around the house and clearly he's a good boy and was raised right.... I think I am in good for awhile.



He takes his mom into the now empty dining room. Leaving sis with me. She only has two switches - on and off. Lucky me - tonight is on. We have a great time. We have a drink and catch up.



They come back and he goes back on, they get up to leave.



She never heard him play a NOTE!



I'm offended on his behalf when he says "You're leaving? I haven't played a note since you got here!"



Sis responds "good guilt ! excellent" and they return to the bar. He plays three good songs then they pack it in and leave.



This morning - the phone rings. My phone.



It's his mom. How did she get this number? I think. Then mental headslap, she has had it for years. The benefit and his birthday.....



First, I put her on hold. Second I wake him up, third, he swears.



The next thing to happen is pacing, changing of clothes and the rushing to get out there, and my fielding calls. the onyl discussion we get to have between us is "She didn't hear a word I said last night".



That's not a good thing. He told her some very important things last night. Including his own health issues.



Parents are funny creatures. I have been taking her task on some of her behaviours where her other son is concerned ( my best friend ) and asking him to go easier on her because she is losing a child. I can't even imagine what this must be like for her. But I do know what this is like for him. He can't watch his brother perish anymore. It takes so much out of him and is borderline debilitating at times, most of which are coming more and more frequently. If he hadn't put in his time already for the past 5 years, I would say that he had to be a little more flexible with this - but he's been carrying the bulk of the load for so long and his shoulders are only so wide. It was time for him to hand the cross over to someone else for his own sake.



He came home in immense pain - physically, emotionally and spiritually. We talked for awhile and I put him to bed.



Till the phone started ringing.



Parents are funny creatures. ONce you become a parent, you are agreeing to love and raise this baby into a responsible human being. Teaching right from wrong, teaching the values that are important to you and passing family histories and generally helping to mold a responsible adult while giving some freedom to make choices and mistakes along the way.

This is a tough gig. You are signing on for a lot and there's no guarantees. And no REAL handbook.

I am not a parent and am not at all sure that I would a good one. My respect for parents in general is huge. It's the hardest job in my book and the lowest paid but I suspect more rewarding in many ways than the traditional 9-5. YOu are after all your own boss with joint ownership in most cases.


Your priorities completely change when you are a parent too. Once changed though, based on my parents and my friends parents, I suspect that they don't exactly alter as the child grows up though. Seeing your child as an adult who can, in fact, manage their own lives because of ( or in spite of at times) the parenting job you did would be difficult. The tendancy to want to jump in and prevent or fix still exists. My mom does this all the time and while frustrating - it's still a sing of love and protection.



I'm dealing wtih parents that aren't mine and seeing world I am not accustomed too, though I knew about it going in ( the fine print on the bill of sale), it wasn't live-in-person till the past month. I am finding it treacherous at times BUT I am finding that I am handling it better than I thought and I am grateful to my own family right now for just bearing with the fact that I am more incommunicado than is normal due to this overwhelming change.


No doubt about it - parenting is a tough gig. God bless all of you who are parents and all of us who have our parents - while they may not be perfect, they are ours. The good things about all of us came from them. The responsible adults that we have all turned into? them.



Their only fault ?



Being human.



That's the commonality between parents and their children.



We are all human.



It's because of this that we err.



It's also because of this that we perform miraculous feats.

My life...

is no longer recognizable.

I'm not sad about that overall.

But have you ever stepped back, reviewed where you are now and wonder how you got there?

And more importantly - why you are there?

I was listening to a broadway show in the care on my way home tonight ( I'm singing a duet with a student of mine for a cabaret concert). It was released in 1991. It's a good show, not phenomenal by any means in my opinion but it does ring some powerful emotions to the surface. It's not a happy show either.

In listening to it, I am reminded that this was the year I graduated with my undergrad degrees in Music Ed and performance. We all left school with stars in our eyes and the hope of future in hearts.

Of course there are pitfalls as well as the pinacles. Between my three best friends from college and I, in the last 17 years we have experienced marriage, children, death of a parent, sever health scares, purchase of first and second homes, multiple job changes, divorce, construction, etc.

This is what makes up life in the reality as well as the abstract.

My life, is shaken up right now. I am still sorting through the pieces to be honest. I started having this conversation with Bernie the other night - and don't worry - I want to finish it with you and I hope you are around on Thursday evening......

But I digress from myself....

I have a lot of things that I am looking at differently.

I noticed that I hate my job. In ways I can't describe. But I know why. I work for someone who demeans his people and is never pleased. When you work for someone like that, you are constantly belittled and berated for doing the same good job that you did before. I have no problem with high expectations, but I do have a problem with consistantcy and trusting that the person above you has your back.

I have 3 more days. It can't come fast enough.

As for my living situation. My life is not less complicated with my best friend here. But it is better. For the most part. Yes we fight. Yes we make up. We are passionate people so the fights are always dramatic. Someone tries to leave, someone persuades them to stay. It's never the same twice.

We are finding out way here. I don't know a different way to say that. It's not new to him but it is for me. I find that he is more patient with me than even I realize here.

My life is practically unrecognizable from before - BUT - we are working on the compromise thing and it's starting to take on elements of each others lives and slowly building into one.

He said perfectly the other day. IN choosing a life together you are choosing just the good and bad times, but you are choosing to do the work that takes the everday living and blends it into the good and bad times. Its this work that is the most diffcult.

There are times I miss my life from the past year. Or aspects of it. I miss aspects of our relationship that are now different. Some better, some not, some the same.

Mostly my problems relate to change and my inability to deal wtih it.

My life is changing drastically. We'll see how this pans out.

Armchair Psychology: Transference

In my family, we have but one crown prince.

If you count ALL the kids he's literally the middle child of 5.... which is odd by any psychology standards.

But if you look closer, you will note that the two children that are born of one mother, the crown prince is the only boy AND the youngest.

I'm no longer resentful and the reason is that this transcends time. All mothers are like this with their sons. It's ridiculous but it is what it is.

I was my dad's princess so it balances out actually.

But at times for both my brother and I, it was tough to take from the other parent.

My best friend has an interesting dynamic in his family as well. His mother gave birth to 4 kids: 2girls and 2boys. My best friend is the oldest boy and his brother is the youngest child AND boy.

And he's dying as you all know.

Their mom has traditionally made his brother the favorite - he's their crown prince. She did everything for him. She went to all his performances, she took care of him in every possible way that she could.

According to my best friend, she has done substantially less for him. I suspect that the truth lies somewhere in between.

The past 6 weeks have been difficult for the two of us and his mom. She is not "wild" about the change of status here. He's not wild that she's turning all the love and affection onto him and I frankly don't know what the hell to do.

She sent me an email on Thursday night asking me to have him call her as she is having trouble reaching him. By the time I saw the email, he had spoken to her twice. I responded anyway politely and positively confirming that i would relay the message. I don't want this getting off on the wrong foot.

Tonight he's playing at a very Shee Shee restaurant on the North shore. She requested reservations 2 weeks ago in order to come hear him. I deliberately chose not to go to give her time and space to enjoy her oldest son's performance with minimal stress.

He just called one his break. They didn't show up.

I know he's disappointed or he would not have called.

It's interesting. On the one hand, he doesn't want the showering of love and affection and motherly concern, but on the other he feels it's his right that he get some of the benefit that his brother has gotten all these years. I knew he was expecting this to happen even at the point where he walked out the door tonight, but to hear his voice, trying to be matter of fact and still cut her break ( she has been in the city most of the week with the brother),on the phone tonight really made me sad. He is so good and so talented and a great showman. I know she is proud of him. I know she loves to hear him perform and I know that in her mind she treats her boys equally, but somehow in mine, given my experience on the subject, I know she's not.

And though he says it doesn't really bother him, now that the option is out there, even by default, it hurts him a little.

What I think is really getting to me about this is the fact that she also sent him an email about how he has been less than helpful where his brother is concerned this week. She should only know what he was like when he returned from the hospital after visiting. It was not good. He just can't do it anymore. It's slowing tearing him up to see his brother this way. And there is nothing anyone can do. The guilt card here is not a good choice.

Which brings out the mean mama bear in me. I get ridiculously defensive about the people that I love and very outspoken.

This is the post that has no end because this is just the beginning.....