Which poison is the killer?

You know, Jon is a songwriter.

He also writes lyrics and verse.

On the eve or rather the morning of his most recent chemo appointment, he wrote a poem. It was quite funny and I can't quote it until he copywrites it.... BUT

There is a point that he makes. That in order to kill the cancer poisoning his body, he has to poison his body with yet another, different poisons. An exchange of one for another.

The drug they are using is a heavy metal. Platinum, I believe, is a factor in it.

As I have repeated this week, this last round took him down hard. I worry a good deal because I am so afraid that if he's this weak now, if we can't build him up, the next round is really going to take him down to nothing. We have a slight routine starting now where he does a protein drink in the morning and a vegetable drink in the evenings. That way he's getting roughage as well as protein and of course, fat. I am putting out his vitamins each day as well to make sure that his immune system stays as strong as possible.

Today, I had things to do for myself and I was proud that I didn't get antsy or worried until I had been out about 3 hours. Considering I was 30 minutes away from the house, this made me feel a little bit like a caged animal.

I did what I had to do however. I had my nails done and my pedicure. This is pretty much the only luxury I allow myself these days. I headed over to my moms shortly thereafter because my niece was in town.

Of course the brat was asleep.... you know that was coming because I couldn't spend an indefinite amount of time with her....

But I was talking with my folks when my brother and his wife arrived. 10 minutes after that, my aunt and her husband arrived. This was turning into party.... I haven't seen my aunt since my brother got married 2 years ago, so this was nice. She is also a breast cancer survivor twice over.

She had a lot of really nice things to say and very supportive.

On the drive home, I was thinking about the conversation I had Friday Night. A long time friend of mine and I were talking. I hadn't seen or spoke to her since January and so she wasn't current with what was happening in my life.

After I finished the update, she paused and asked me "Why again are you doing all this? You aren't married to him. You aren't responsible for this. "

I was actually surprised. She is the LAST person. And I mean last. To make such a statement.

I thought about it. The reasons I am doing all this.

It wasn't a long thought or process. It was simple. I do it out of love.

And it's not about the status of the relationship. This doesn't need to have rings associated with it, though that would be nice.... it isn't required. To take care of someone you love when they are sick doesn't require marriage.

Oh I see her point - and I appreciate that she looks out for me. But honestly, asked her what she would do if our roles were reversed.

She laughed. She said - nothing dramatically different.

Now THAT'S my friend.

The fact of the matter is, no matter how checkered the past was, it's in the past. No matter what mistakes we both made separately and together, they are in the past and hopefully we learned something from them.

He is in so much pain and discomfort. He is miserable and there is so little I can do for him at this point. I do what is needed and try to add extra support where I can. The only time he doesn't feel crappy is when he sleeps. I sit with him and watch things on TV I never thought I would watch and I'm even getting into it too.... which is pretty funny.

Things like baseball - which is pretty tame. I know the game on a high level and some of the finer points but I'm learning so much more. Being a former half-assed Yankees fan. I have converted to a Mets fan which should make my dad happy.

I think if I had to pick one thing that I would never have given the time of day, it would be the Ultimate fighting and boxing. I even shocked him when we were watching the second match before the big title fight one night.... One guy was taking several blows to the back of the head which is a no-no... I yelled at the TV for ref to call him on it..... I thought Jon was going to pass out from shock! I Don't think he thought I was paying attention to the rules....

He barks at me now. Considering how crappy he feels, I'm surprised it took this long. I don't let it get to me too much. But he feels bad. He apologized for being a crank tonight. The reality is that I knew he would be cranky and miserable. I didn't take it personally.

I have no idea how bad he really feels. I only know that his tolerance for discomfort is so high that if this has taken him down this far, it's really bad. He can't taste anything.

I am expecting this to be like this for another week. Then a good week. Then Round 3.

W e have a total of 5 weeks of treatment left. The tumors have gone down. That is visible. That is good.

I just want him to be cancer free. Forever.

The aftermath and the new intimacies that go with that

Its 48 hours later.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I didn't miss a beat.

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

" Good" he whispered.

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

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

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

Chemo Round 2

Today completes the second round of chemotherapy.

He handled it relatively well for the first day. It's always the subsequent ones that get him but I have high hopes for this.

He wrote a poem - it was funny and I laughed as much AT the poem as I did from the responses sent by his friends.

I worried all day because I never know what condition he's going to come home in.

The tumors appear smaller. That's the good news. The bad news is that I have to start bulking him up on liquid diets. He can't eat solid food until his throat starts to heal.

He was really upbeat when he came home. I was so happy and utterly surprised. Three days??? In a row?

We had some interesting conversaton too.... He teased me about the tray - I have this thing that I do on chemo days.

I set up a teak tray on the bed. First I vacuum the mattress with the hepa filter vacuum, put on fresh sheets and use lavendar scented pillow spray. THen I take the teak tray and set it up on the bed with tissues, motrin, a huge bottle of water ( Smart Water by Glaceau with electrolytes!) and the remote controls. I added a bud vase with a silk flower because I couln't get down to to my friends' home and pick some lilacs.

So he walked into the bedroom to lie down, Saw the tray - and teased me.

"?You - with the tray!" he said....
"Hey - you would MISS the tray if I didn't put it out! You had better be nice to me or one day there won't BE a tray!" I replied
"Ha. I'm not buying it. " He commented
"I can be mean if the situation calls for it" I say
"Yeah...about that.... Not buying it!" he says
"I do HAVE limits - they can be pushed" I say
"Yes - which is exactly why I choose NOT to do that. " He said.

I laughed.

So did he.

That's the banter I am accustomed to.

3 good days in a row.

Hmmmm.

Why do I get the feeling I am going to pay dearly for that?

Happy Memorial day

I have been chided by a work friend for not forcing and creating memories between Jon and I.

i wouldn't say that we weren't, certainly not intentionally, but I can tell you that the illness has largely prevented us from some of the routine things that we used to do together.

Today, one my best girlfriends invited us over to cook out. He cannot eat solid food, but we went anyway.

What she figured would happen was that he would sya the upright bass in the corner or the piano and we would lose both he and Lizz.

Well she was right. And thank Goodness.

He really needed the music today. He lit up. Like a tree. At Christmas.

Lit up - I'm not kidding.

I wasn't in the room part of the time, but he called me in at one point and asked me to play a chord progression on the pano for him ( all my music friends can please stop the laughing now... ) and after a few tries, I did finally get it.

Then he moved onto to something else. So I sat and listened. sometimes I sang what I could remember of the tunes ( they weren't his usual because he canoot sing those things).

But he did play You are the susnshine of my life. I was touched because I love that song.

We re-established the connection even if he was being a bit of a plick with me. the eye contact was there. The connetion was back.

I was relieved.

When we got home, he flipped open the Beatles Orchestra scores that he has to Filling a Hole. Turne the light on and called me in from the kitchen.

"Play this" he says.

"Umm... OK" I think - I haven't heard this tune in a long time so this is going to be interesting.... key of F, ummmm not too hard...OK....

We start playing, he gets his guitar and the two of us start jamming... It was so much fun. Just us.

Then hs says.... "I beat you up pretty bad at Ellie's today. I wanted to give you something to play that would make you realize that you DO KNOW WHAT YOU ARE DOING - I've just been doing it longer...."

I had my back to him but I turned and looked at him and smiled.

" You did beat me up. But it wasn't bad. It just pointed out to me that there are stil things that I need to tighten up - I'm better than I was but nowhere hear where I need to be in music theory.... No wonder I had trouble in college theory!"

Then the doorbell rang.

My neighbor next door is probably the lightest sleeper I know. He's also one of the best people I know. So last week when he slipped the note under my door about the TV volume at night on the day that I had my car accident, I was not as responsive as I normally am.

So we had a nice chat. He felt badly for bringing it up and I felt badly that he was losing sleep. We have a great relationship, thank goodness. I do not understand how his other neighbors can be so. umm, high maintenance.

Then he realized that Jon was really not rebounding well. He and I talked a bit about the disease the course it has taken. He got teary eyed... so I took him out to the hall and gave him a hug.

When I returned, Jon wanted to know what happened. So I told him. He looked at me and said "Now I am going to write HIM a note and he'll really get misty when he reads it!"

We both laughed but then we talked about how he had said how he hates when bad things happen to good people and how Jon is such a good guy and how we deserve each other because we are such good people and how unfair and unjust the whole thing is.

And all of that is true.

tomorrow is round two of Chemo. We Pray that the ant-nausea meds made it to facilty otherwise we are going to have a hideous week. They can't be sent to a pharmacy they must go directly to the hospital.

I do not expect this round to go as smoothly as the last one but I pray that it does. I pray he regains his voice and I pray he doesn't lose his hearing.

And then I just pray for us and for life.

The good news is I'm not crazy the bad news is, for the first time I am chicken!

Dear Contessa,

Thanks for your email and don't worry that it wasn't short. I could sense just by writing you were working things out. This, my dear friend, is a good thing to do. I encourage you to continue to write, to put on paper (or at least on screen) what you are thinking. Perhaps that is the best remedy there can be.

I'm saddened to hear of the difficult time you are going through and the sense that you and Jon are growing apart. Please know, though, that from my experience, when an individual in a relationship goes through a very difficult time, what you are feeling and going through is a normal part of the illness. Although no one can go through the illness other than Jon, it affects so many others - including you. I have been concerned and continue to be concerned that this illness is affecting you much more than you care to even share. It is vital for your own sanity and grace that you maintain a sense of normalcy in the midst of craziness.

Contessa, I do encourage you to, when the time is right, to share with Jon your feelings. If he cannot speak, perhaps he can write to you. Share for your sake, share for his sake, share for both of your sakes. I know it might be difficult, but anything said out of love is a true gift.Please continue to know I have both of you in my prayers.

In Christ, The Very Rev


I received this email this morning after I broke down last night and wrote out the long litany of what's been in my head and heart for the last couple of weeks. Then I did the craziest thing of all - I just hit send without proofing, re-reading or anything.

That The very rev took the time to read it between services AND responded touched me greatly. It meant a lot and I feel so much better that I have said it out loud.

It also helped me to do a better job at home. This is going to sound stupid, but I have managed to keep up with the housework this week.

His diet has dramatically changed again. We are back to liquids. Not because of the dental work he had done but because the food gets caught in his throat. He hacks and cough and sounds stangely like one of the cats when they are horking up a hairball. But his causes him tremedous pain as well.

My eczema is running hot and cold and its attacking my scalp mostly. I have to relax more.

I also notice that my sleep patterns are really off and I have no ability to hear in my sleep. I used to. But not it takes me longer to come out of sleep and I can be mentally awake nad not be able to hear for 10 -15 seconds. Then it's as if someone adjusted the volume control on my head and I hear everything loud and clear. I also don't sleep a lot of hours at night and am afraid to take anything for fear that I will not hear him if he starts coughing and heaven forbid choking.

I did work out this morning and ate fairly intelligently. We watched Knocked up tonight which is really funny.

I have noticed that in the past few days he's spending some better and more quality time with me. I don't know why and I don't care.

I'm just glad that we are at least attempting to re-connect.

an interesting revelation

I noticed today that how my day goes is largely reliant on how his day is. How he feels sort of determines how I feel - though not 100% by any means.

Today he walked into the bedroom and turned off the alarm that had been going off for some time. I discovered that I can sleep through literally anything when I take my sleeping pill for my eczema. He had been up for some time and it was driving him crazy.

I expected to hear about it later. Except that he didn't know that I took the sleeping pill at 4AM.


After he left for radiation and blood work, I took my shower, got dressed and did my hair. I looked pretty damn good since I am now down 7lbs... if I do say so myself.


So I sit down and start working, I put my head phones on and start listening to my ipod. Singing along happily.


He walks in, laughing and smiling at my singing.... and starts talking about his blood work. THis is good. we haven't had a "real conversation" in a couple of days because he just can't talk without his voice and he's been feeling generally crappy.


I found a neat but simplistic website for caregivers of cancer patients. The first thing I see is a story submitted by a man who didn't know how to start a conversation with his wife who had lynphoma. He had conversations played out in his head but chickened out when it came time to have them. It was like reading my own personal life. I nearly died laughing AND crying all at the same time.

The bottom line for him, and me, is that we don't speak of certain things out of protection for the other one.

I didn't force it today. The day was going well, he's tired but not in pain and we are gearing up through this weekend. building him up to have his next round of chemo on Tuesday.

Having never been a cheerleader before, largely because I just can't get that excited about sports, this is the challenge of my life. I need to be upbeat and keep him upbeat. This website said that sometimes the caregiveres just can't be upbeat and are tired and exhausted and sick of hearing that being positive is the most important thing.

Oh thank God.

I thought I was losing my mind.

Seriously - I know positive people and even THEY ( Yes you Maple mama!!!) aren't that upbeat 2x7x365. ( I do recall you hurling a desk drawer at me once.... ) . It's just not possible.

So I did something kind of weird.

A few days ago, I pulled out a book that I had in the house but never read. I had a friend who worked at random house publishing many years ago in the self help division ( yes I know it's called something else now...) and she gave me TONS of paperback books. One was called how to make anyone fall in love and stay in love with you.

Or somethng like that. I pulled it off the shelf, initially to put it in the donation box for the library. I skimmed it fast and realized - there are some interesting communication techniques. And some reminders of basic ones. Now I was not necessarily planning for the use that the book intended, but who cares right?

Well, in doing a little bit more skimming I realized in the "eye contact" chapter ( seriously there is one) the one thing that always centers us, is our eyes. And music. And God help us if they lock at the same time - BAM!!!! Lightning bolts. It's scary - and people around us KNOW it. It's really crazy.

So each time we talked today, I turned 100% of my eyes and my attention to him.

I noticed that he was responding. Positively.

We had a lovely afternoon talking and having general conversation. We saw some Tom Waits music on You Tube together. We caught up a bit Then he called the Whore.... and got her youngest on the phone, which was good as that's who he really wanted to talk to, gave the information he had to and hung up. He was relieved that he got him on the phone and not his mom. He wasn't up to the conversation.

He went downtown on his bike. I went to teach. I came got hom first and started working on disecting his original tunes and trying to sort them out on the piano. I want to transcribe the charts and write keyboard parts. Since I am not great at this - it's going to be challenging. Now that the copywrite is in progress I feel better about them.

When he got home, we sort of just hung out, checking email, playing computer games and at 8 he announced that he was exhausted and as he is going in to see his brother tomorrow, he needs to rest.

This was challenging for me as it is 8 PM. He wanted to lay in the Living room and sleep because he can't get through the night. Still. It's constant up and down for him. I feel badly for him, and me, that he can't get through the night and sleeps on the couch most nights. I have offered the bed and he won't hear of it. He feels that i need my rest too and that's why he won't sleep in here. His up and down and need for the TV will keep me awake. Frankly some nights, I would rather have him here and be awake. But that's neither here nor there. Thats ME being Selfish and just wanting the closeness and the connection.

The fact is, I am being me more of the time. And I am seeing some positive results. Today he broached the topic of his voice and singing. He had called Otto's, as a test, to see if they had live music tonight. The Maitre D, announced, happily that, Jon's band was playing tonight. He didn't even know what to think. He called me into the bedroom and tells me this. I started to Laugh. He wasn't laughing. Huh. He told me that the Radialogist said that there is a chance he won't recover his voice after this.

Without missing a beat, my response was, "You don't know that. You have to be positive about this. There's that risk to be certain, BUT it's only a risk not a certainty."

Without missing a beat - he says "OK... I'm POSITIVE that I will lose my voice! - HAPPY????"

We both started to laugh. "Get in the bed NOW and rest!!!!"

He will get his voice back. God can't be that cruel.

Jealousy- the wasted emotion

I finally get it.

really - I do.

I get it.

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

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

I was, in a word, successful.

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

moving on.

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

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

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

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

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

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

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

I need to be me. More.

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

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

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

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

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

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

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

What I do for love......

God and his infernal signs

here's the deal.

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

I had a car accident last night.

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

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

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

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

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

And it depressed me. A lot.

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

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

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

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

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

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

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

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

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

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

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

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

Good start. Maybe there is hope.

A normal day - mostly

Today was actually quite wonderful.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

stay tuned....

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.