The life and times of the caretaker

Being a caretaker is rough. I don't know how professionals do it.

It's harder in some ways to be the designated caretaker of a loved one though, because there is a vested interest in their wellbeing. We WANT our loved ones to get better.

If you are any kind of intelligent person, you read a lot on the illness itself, caretaking, alternate methods - pretty much everything you can get your mitts on.

Invariably there is the learning curve of the patient. For example. I've read in several noted medical websites that continuing to take a multi vitamin and various supplements is a good idea. I mention this to Jon. Jon immediately hits the gutt reaction and says "no".

In the beginning, I took offense and immediately argued. Now I don't bother. Why? Because 48 hours after I mention it, he will come up with it on his own and speak to his doctors who, in turn, will either agree or disagree - or in one case , laugh, because we quoted HIS article.

So in my case, being the caretaker here means the following M AJOR tasks rest with me:

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

You get the idea.

Last year at this time... well - we were breaking up - but RIGHT before that and RIGHT after... my responsibilities were simple. I was the girlfriend. I was the sole emotional support while he took care of his dying brother ( who is still living now by the grace of God). We were still courting.

I miss that. A lot.

What I have discovered in putting his needs completely ahead of my own is that eventually i get tired of being last or not at all. And I lash out. I don't need a lot. However, Last year this time I weighed more than I do now, but I felt prettier, sexier, smarter and loved. Now? I feel ugly and fat all the time. I feel unloved and not in the least bit sexy. As for intellect? Please don't get me started.

Here's the deal though. If I feel all those things.... imagine what he feels like?

Neither of us should have to feel this way andd unfortunately the situation is such that this is going to happen. The high side of this is that because we are doing this together, the downs are more physical for him then mental and emotional. For me the dows are more emotional and mental not physical.

It's not easy and lord knows I add to that list every day.

It's an act from the heart. It's an act of love.

Trust vs. Jealousy

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

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

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

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

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

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

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

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

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

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

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

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

So why the insecurities?

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

The Go / No - Go on Chemo

Last week, we were supposed to have the last round of chemo.

To re-cap, his bloodwork came back showing some slight anemia and some of the levels were off due to dehydration. They gave him IV fluids and strict instructions to "fluid-up" between then and now.

He went in this morning, had his radiation appointment where they decided to back off the radiation and concentrate on ozone only as the tumor on the left side has shrunk to less than 1/3 it's original size. The one on the right is substantially smaller but not small enough yet. All in all - major progress.

However they were not happy with his blood work. So tomorrow there will be no radiation appointment and there will be no chemo.

The No-go on the radiation is a good thing.

The No-go on the chemo - is not such a good thing.

The chemo that he's on requires a minimum of three doses to be effective. I'm no oncologist, and contrary to the hits my intelligence has taken this week, I'm a fairly intelligent and thorough person when I am researching something. I have read everything available on the chemotherapy drug he's on to date. Every night, I take my laptop into another room and research it on the web. I check the symptom list and review the ones that he exhibits vs the ones he doesn't.

I'm confident there is another round in our future. It just can't happen till the blood work comes back reflecting the right levels. I have been stressed and worrying abouut this since the beginning. I had a nightmare about it last night. Sadly that one came true.

So we wait. We work on the state service applications for assistance in the medical arena. We file the copyright paperwork on his songs. We research the licensing of other tunes for recording purposes.

and we wait.

How do I get this all done?

I ask myself this question every day.

How on earth am I supposed to:

A. work full time?
B. Refill the water bottles
C. Make crazy amounts of tea
D. Eat
E. Cook
F. Clean
G. Teach
H. Pay Bills
I. Help locate missing items
J. Make sure meds are out
K. Keep house comfortable
L. Practice
M. Sleep
N. Maintain relationships
O. Communicate

I can go on and on but the sad reality is, this is the tip of the iceberg.

I noticed that my cell phone bill is through the roof. Why you might ask. Well, the only time I can speak to people privately is when I am out of the house. I am not going to vent about Jon in front of his face - that's a bit unfair to him.

I miss my life from a year ago. Ironically a year ago around this time is when I was leading up to our last breakup. Funny how I miss that. I don't miss the bad things about it but I do miss the fact that he fought for me.

I wonder sometimes if this was planned. Did God plan for him to move in with me right before he was diagnosed ? Did Jon on some level know how sick he was?

I have no idea what the future holds. that scares me to death. I am trying to relax and not freak out that I don't always get eerything done. For example - I did not vacuum today. I am trying not to feel guilty about that as I hear him sneezing and coughing. I just didn't get there today. I got the groceries done. I got the dishes done. I got the water bottles refilled, his meds put out for tomorrow, mine too, I cleaned out the fridge, I worked my 9-5, I taught 2 lessons, I tore apart the house looking for one of his 1099's which we did not find yet, I changed the cat box, i clipped the cat's claws, made myself dinner, again the list goes on. I did all of that. Yet I feel badly that I did not get to the vacuuming.

I don't know how to get all of this done and still have time to be with him. Tonight I sacrificed the vacuuming so we could watch a movie, part of the Mets game and The soup. That took 3 hours in total.

And Yet I still feel guilty.

Turning a corner

5 weeks have passed.

We are in the last phase of the treatment and yesterday and today he finally got some of his energy back, his voice and lastly his appetite.

I can't tell you how this makes me feel. He told me joke after joke today when I got home. We watched the Mets lose then win, we watched Tiger Woords in the US open and the Celtics. We watched a great new Law and Order CI and the In Plain Site and rounded the night out with The Soup.

A lot of TV but then that's about all we have energy for tese days. We had a good time though. We talked a lot we had some really entertaining moments.

Last night was even better. I went away to Lily's without him. Much as I didn't want to. I did not want to spend my birthday without him. But I went and came home the same night. I had a good time. As much as could while worrying about him.

By the time we got to dinner... Lily came in with a piece of paper and said that before the festivities REALLY got out of control, she had been asked by someone who was unable to be with us to read something special.

And she proceeded to read a note from Jon about me and how much I do for him and how important I am to his recovery and how I put up with so much always with a smile and how it's a life debt that he looks forward to repaying for the rest of his life.

I , of course, cried.

Because that's what I do.

I actually thought he forgot. I really did. And spent about 4 days being hurt by that.

It was a lovely surprise. But here's the irony. I bought him a card about sending him healing thoughts. And included my poem in it.

So we both gave each other something from ourselves when the other wasn't around.

When I got home, he was waiting up for me. He couldn't wait til I got home.... It was so cute - he's been sitting on this surprise for over a week. I was touched.

We are headed into the last chemo treatment on Tuesday. There is every possibility his anti nausea meds will not make it to the hospital in time thus ensuring a horrible week at the minimum.

He'll be OK. I know in my gut that this is going to be OK. I can't wait for him to get better. He is talking about all the things he wants to do when he's better.... a VERY good sign.

I have four more weeks. I feel like it's groundhog day.....

Seeing stars

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

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

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

A heavy glass Pitcher fell on my head.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear God

Dear God,


I am so unclear as to what is happening to me now, why it's happening and how I got to this place.


I know that the life of that caretaker is tough and I know I sound UNBELIEVABLY selfish when I talk about it, because though I am not complaining - I am kind of whining.


But I whine because of good things. I whine because I WANT him to be healthy. I whine because he doesn't DESERVE this.


So I whine.


Oh yes there's a little me me me in there too, because I want OUR life back. I miss those times that we had - the fun, the laughter, the music.... all of it.


In one fell swoop - BAM! Diagnosis -CANCER.


My heart stopped beating that night. That awful horrible night.


Then it started again. With a different purpose. In a weird way, I feel like Jon must have known that it was going to come out this way. Otherwise, why didn't he go home? He came to me after that wonderful and horrible night in Malverne, and never went home again. I still to this day ask why that happened and I don't think I will ever know that answer.


I've never been great on faith in human beings. Faith in you? sure. Faith in the intangible? no problem - I know it's odd. But faith in people? I test them long and hard before I make that decision. Even if someone I have complete faith in has a faith in someone new to me, I still need to test that person, though the recommendation may shorten the test....


Faith in Jon has been an uphill battle. He has faith in me. He trusts me. Implicitly. I will never know why. There are things that have happened between us that, in no uncertain terms, should have destroyed the fabric of this relationship. But it didn't.


I cling and grasp and hold onto to our past as a means to keep forging ahead into the unknown future with him.


I have so many conflicting feelings and fears and problems and stresses. Cancer doesn't just affect the person who has it. It affects everyone around them.


I feel sometimes that I come second, or third - hell there are days I don't feel I even make the priority list in his life at all. His utmost of course, is getting well. But others get far better treatment than I do. The frequent irritability, anger and frustration get taken out on me on a daily basis. There are others who get the nice version of him - people like the whore...


You know it's my sore topic that she still exists in our world. But my pet peeve with her right now is that she gets the good parts and I get the crappy part. She gets to cook for him and send him little inspirational tidbits and what not..... I get yelled at for making him repeat himself because the TV and 3 phones were ringing at the precise moment he decided to comment on something. I get told when food isn't good, tissues are gone - after - not when it's low when I can replace without running out, cats need brushing, air conditioners need to be on - or off.... I need a fresh washcloth.... pick up lemon drops, you get the idea. I'm the one who works, I'm the one pays the bills, I'm the one cooks, cleans, fixes, installs, coordinates - I do everything.


And I hold no resentment for doing it. I do, however, hold resentment towards the fact the she gets treated nicely and has the easy job and I get treated - well - interestingly - and I have the hard one. it's not fair.


But I imagine that this is part of the challenge here. I imagine that you are doing this because you want me to stop being so afraid of her and what she represents. I imagine that the self doubt that I feel because of her presence in our lives for the past year has been very shattering to my confidence. Or lack of. And this is how you are planning to get me past that? really do you think that's the best idea here? I'm not really so sure.....


meanwhile - I am entering into the last year of 30's on Tuesday. And I know that he will do nothing about it. I know it. As sure as I am typing this. I have subtly reminded him, though he pointed out that it was not necessary. He isn't going with me to the country as we planned, because he cannot sustain the trip. He wants me to go alone. I hate that idea. In so many ways I cannot describe.


So I sit here, watching the second movie about someone my age losing the person they love most in the world ( Catch and Release followed PS I love you) and wondering if I am going to end up in that position. And only you know - isn't that right?


The thing that makes me laugh is that we once had a conversation about heaven and hell. Both he and his brother believe that they are on the express train to hell. Jon thinks he's a bad guy. That he earns his nice guy points every day because he's not a nice person. I refuse to argue with him on it because he has made up his mind on it.


But here's my take on that, you can tell me I'm wrong if you want God, but I don't think I am. Or at least I"m close.


See - You don't make junk. There's nothing that you have created that's all bad. Or all good for that matter. If it were all good - we wouldn't appreciate it. There's no real comparison now is there? If you see the darker side of human nature, it makes you appreciate the lighter brighter good side of human beings.

Like the concept of hell. Is there REALLY Hell??? I mean as opposed to heaven? If there really is hell and the "bad" people go there, and You don't make junk - how does that all work? The way I see it, there isn't two places - heaven and hell - there's just one with different levels when you get there.... The many rooms chapters of the bible if I may get specific. Now that doesn't get so specific as I am right now... but if there are "many rooms" surely some of them could be for those folks who have good in them but perhaps did not tap into it as frequently as others did.... Just sort of throwing the concept out there... I could be wrong... No real way to tell.

Jon and his brother are always joking that they are on the express train to hell. The bottom line there, in my book at any rate, is that no one who put their entire LIFE on hold to care for their dying sibling at their own expense is on the express train to anywhere! There are special places in heaven for people like that.

It's also part and parcel of the poor people who feel obligated to fight religious based wars. Honestly - what is that about? I cannot speak for anyone else, nor will I, but I seriously don't believe that, in the case of my own faith, Jesus would have thought that fighting over him and his followers would be that great of an idea. Given the whole 10 commandments thing - more specifically "Thou shalt not Kill" - I"m thinking that this is definitely not a plan that Jesus or God would endorse.

I didn't mean this to turn theological or anything.... Just some things that are mulling around in my brain.

The thing is, I am not unhappy. I won't lie and tell you this is my idea of bliss, but it's a challenge that I embraced. I embraced it without thinking it through logically - not that it would have mattered. The choice would have had the same end result. I just took each thing as it came, solved it, moved on to the next thing. And the next. Till I found myself in a weird stressed out world. A world where I can't speak my mind without really thinking it all the way through to the bitter end, rehearse the conversation and subsequently dismiss it as petty. That isn't me. I have the conversations, I don't let them brood, I don't garbage dump and I don't grudge collect.

Hence the reason I am using this blog the way that I am. If I don't let it out somewhere - it won't be the cancer that kills him!!!! Just kidding....

Love is a powerful motivator.

I hope you can see your way to enlightening this path. Because damn - it's so confusing.

Yours faithfully,

The Contessa.

The line between selfishness and normalcy

I have had the weirdest day.

The thing I am taking away from today is how annoyed Jon is today. Everything I do annoys him. It was not continuous. But it was more like a recurring theme.

Every time I tried to talk to him, he would sigh, roll his eyes, and look at me. Bored. or irritated.

He would ask me things like "Did I leave my book in the bedroom?" I would get up, look, not find it and proceed to look elsewhere. That would be the moment that he would yell at me to forget it.

We watched Juno together and really loved it. It was the only time today that we had a decent time together.

When I left to go teach this evening, he asked me to get him mashed potatoes and gravy. We talked about his not needing to go to radiation on Monday and Tuesday which is good. I mentioned that I was planning to take one of those days off to do some things and have a relaxing birthday. then he pointed at me and said

"I want you to go to lily's next weekend, do you hear me?"

"You aren't coming with me?"
" I don't think I can sustain the trip. "
"We don't n eed to stay overnight if you would rather come home."
"I don't think I can do it. At least not now."
"Ok.... I really wanted to go up there with you"
"I know.... I'm sorry"

I feel so badly. I want him with me for my birthday. even though last year was not the best year at that party, we were still together. I want things to be different. I want things to be the way they were.

Where is the line between selfishness and normalcy?

My problem right now is that infernal uncertainty. I know so much of the things happening today were part and parcel of the disease and the frustration. I can't pretend to imagine what he is going through. I know that I hover at times. He really thinks that I don't listen to him, but it's not a question of my not listening as much as it is him speaking with his back to me or head down and I can't always catch every word.

Instead of cutting MYSELF slack, I berate myself for not doing better by him. I never let him see me cry. I never let him know how angry this makes me and I never let him hear me bitch. he has not yet seen the poem becuase his brain isn't ready to receive it. That's OK.

I have a headache today. It's allergy related. I think.

Or maybe it's stress.

Or all of the above.

1:42 AM

The sleepless nights
The wordless fights
You say I don't listen to you
But I hear you, I truly do.

I listen carefully when you cough
I hear you when you choke
When I hear your breathing slow
I finally wind down because I now know....
You are resting.

I can see it in your face.
In repose you are in peace.
The pain is washed away.
Your mind and body are at ease.

The treatment you require
in order to survive
Is not one that anyone would chose
for their hearts desire.

It courses through your veins, for one solid day.
Causing many other symptoms to come along the way.
You are strong enough to bounce back, though each time takes much longer.
What I notice most throughout this process, is your will gets so much stronger.

The power of your brain and your sense of humor never diminishes..
Sadly though, your appetite can't appreciate my wonderful dishes!

I never thought in all that time
That you would decompress with me over Vodka and lime
That the tables would turn as if on a dime
That you would become the patient and I would watch helplessly as you decline.

Though temporary, I realize, that does make things better.
Except when you pant like an Irish Setter.... :-)
I cannot imagine what you are going through inside,
I'm sorry in advance for the things I don't provide.

I miss the way things used to be.
I miss our talks and all the movies.
I miss your touch and your kisses.
I miss the closeness and the way you listened.
I miss our music and that intense connection that blooms
I miss you most even when you are in the next room.

I hate that I keep it all bottled up in here
I can't talk to you like I want to, mostly out of fear.
I fear that you will be angry or sad.
But mostly that I do not want you to feel bad.
I do not want you to ever think
that I blame you for these tumors they are trying to shrink.

Five weeks will soon pass - before you can blink
And we can start again, I think.

Stay strong and fight this. I know you can win.
When it's all over, you can begin to live again.

There'll be tears in my ears....

Ok - a lyrics writer I am not....

These are actual C&W lyrics to a song I am unfamiliar with. A friend of mine used to quote it. They stuck with me, lord only knows why.

Also in a book I read awhile ago, by Mary Higgins Clark, The heroine of the story was describing the aftermath of her sister's death "My eyes would just suddenly start leaking and I had know idea it was even happening."

This is what happens to me now. I don't consciously cry. It's really odd. I'll be watching TV - it could be any show - but for arguments sake we'll use tonight as the example. I came home and Jon told me I didn't have to text him when I was on my way - if he needs something he'll text me. It just wakes him up.

I apologized for disturbing him to which he said I couldn't have known that - which is true.

So we were watching "Sleepers" and old movie but one that I really like to be sure. At the end, I noticed that my face was wet and that tears were leaking onto my hands. I don't think I even realized I was crying. No lump in the throat, no flushed face, no inablilty to speak. Just water leaking out of my eyes.

A really weird phenomenon. Stranger still - I can't seem to stop it.

I'm sure it's a combination of things. I don't feel sad. Really. Stressed - yes. Busy? sure. Lonely even though he's here? absolutely. Feeling that I don't do enough? Hell yes.

But sadness? no. Other than the normal sadness that comes from watching a loved one suffer. And that's what I do more often than not - watch a loved one suffer. Because there is little any of us can do including him.

The latest news is that the Chemo is aggravating his Gout. So we are changing up the non existent diet to include more fruits and vegetables. in liquid form of course. I am reading up on dietary changes that will support both gout and chemo.

Every night I take my laptop and do what I call research projects. I kick off some key words in Google while I write my post for the night. Then I scroll through and read up on the topic of the night.

Diet is tonight again. This is going to be a few days. Any suggestions for websites to look at are appreciated!