So one may wonder what has happened in the 2 plus years since I have been here.... a lot... and then nothing. I was incredibly happy with V. He is a terrific man and a wonderful friend. However, we did not get married as planned this past October. He left over the summer. We are still the best of friends and will be forever. Sometimes things just happen and life changes.. and life has changed for the both of us.

So now I'm back to just being me- not an us. I am out dating again which is interesting and scary and exciting and nerve wraking-  everything wrapped into one. I hear the clock ticking as I just turned 35 and wonder if everything I ever wanted will still end up happening or will never end up happening.

I was trying to find a picture today- and went back and read what I had written to myself more than 3 years ago and the same things hold true- though they have been questioned over the past 6 months. I do love- I do have the capacity to love- I have amazing friends and a job that every day I am tempted to leave but still stay at. I don't know what's next and I still miss John every single day. It's almost 9 years ago that he was diagnosed and life forever changed. Yet every single day I still miss him and wish he was right here beside me. But I also know it's 9 years of living every day with someone looking out for me and hoping that in the end everything will turn out just as it should.

There has been a lot going on the past 2 weeks while I was retelling John's story.

I met someone- V.

He is the one. We both feel that. Some may think that we are crazy but when you know you just know.

He is amazing to me. He is amazing in general. I am completely in love with him. There are no games, there isn't any anxiety. It just is right. I don't have to convince myself to be with him like C. The feeling is completly and utterly mutual- unlike J. He is a man. A grown up. Someone I don't need to take care of but will because I want to- not because he needs me to.

He will be moving in very soon. Truth be told- he has not been home to sleep since we met. But truth also be told we are waiting to get to know each other better for anything truly intimate. He is not scared of the next step and neither am I. I know there has been a down payment made on a ring. I know it will not be long before that ring is on my finger. We are planning to be married by this time next year.

Part of me thinks that John must have sent him to me. That he knew in some way that this person, this wonderful person is everything I needed. I tell V. that he is the perfect combination of John and J. I love him very much and truly am so happy that my insides are bursting.

March 13, 2004

Early in the morning on the 13th I woke up and went to the living room. No phone calls.

Took a shower and was out the door with Dana fairly quickly. We went back to the Brigham and there were no changes overnight. Mike was still there- he couldn't leave him. Kathy was sleeping and pat and Donna were in the family room. I went in and out of the room all morning- there was only so much I coud take and it was just not easy at all with Kathy.

Around noon I spoke to Pat and he said he was headed out of there. He thought that maybe if John knew it was ok with us to go that he might let go. So we said we would stay in touch all day but that we would leave the Brigham. Kathy refused to go anywhere and Mike said he would stay with her but everyone else left.

I went with Dana to her house and made a few phone calls. We picked up her car and went to Target to get a few things. I had stopped doing laundry pretty much and was running out of clothes and had no food in the house o we knew we had to pick up those few things. We also picked up a stupid dvd just to pass some time. We picked up a pizza and headed to my place.

I called Pat a few times to see if he had heard anything but nothing had changed. John was holding on for whatever reason. As the day stretched into the night all I could think was that he had to die today- the next day was my mother's birthday and I just didn't wnat that to happen on so many levels.

At about 10:30 I started to pleade out loud to just let go. That I would be fine- that his family would be fine-- but that he needed to do what was best for him. At about 11:15 I said to Dana that I would be ok if she wanted to go home. That I needed to learn how to go through my life on my own. At 11:25 as she was packing up her stuff the phone finally rang.

He had died at 11:20. 11:20 which had such meaning to us as 11/20 was to be our wedding date.

March 12, 2004

I woke up from my nap in the family room with the entrance of John's dad. I had never been so grateful to see anyone in my life. I was just so happy he had made it and John was still alive.

However John had not woken up since that early morning.

Dana was there and had brought along a bag of stuff for me to wash up and try to feel halfway normal. She would camp out in the family waiting room all day and be there for everyone who came. Pat and Donna and Kathy met with the doctor. He suggested meeting with the hospice people- Kathy would hear nothing of that and unfortunately she was his healthcare proxy.

So we sat around a little alternating going in to see him. Mike came. Kerri nd Jason came. I remember going into the room at one point and Jason- who was John's stepbrother- was just sitting in the chair balling his eyes out. He said he didn't want him to be alone. Emily and Tom came.

His breathing was going steadily downhill and they were trying to keep him relatively comfortable so the morphine dosage kept increasing.

Around 5:oo that afternoon it was clear that decisions were going to have to be made and be made soon. Kathy firmly believed that he should be put on life support to give him a chance with this chemo treatment. The rest of us just wanted him to have some peace. I was not allowed into the conference where everything was decided however about an hour later Mike came up to me and said they had decided to let him go. I had such a strong reaction of misery, relief, and anxiety that i started to pass out and then threw up. I remember Dana coming in with me to the ladies room and me saying that I just didn't know how to do this- how to say goodbye.

I went down the hall and the priest was in the room administering the last rights. Kathy closed the door to keep me out. Pat came out after they were done and said they would leave- he would force Kathy out -so that I could say my goodbyes- as they didn't think it would be very long.

I went into the room and there was my John. They had washed him up and changed his johnny and he just looked so peaceful. I grabbed his hand and told him I loved him. I would always love him. And for the first time that day he opened his eyes. He looked completely at me and said love. Then he closed his eyes again. Everyone came back into the room. We each were holding different parts of him and just watching him breathe as it came slower and slower. Those were agonizing hours- just wondering if each breath was his last.

At about midnight I looked at Pat and he was just exhausted and I knew I was too. I hated leaving but knew that if I didn't I would never make it through whatever the next days held. Mike gave me and Dana a ride o my house- as it was decided she would be with me until he died. I took a shower- left my cell phone with her on the couch- and went to bed.

March 11, 2004

Thursday morning I left home and decided I didn't want to take the time to get on the bus to get to the Brigham. It felt like I needed to get there right away.

I was right.

John had gone steadily downhill overnight. He was now on 100% oxygen and it wasn't enough to keep him stable. They decided he was so oxygen deprived that they would start morphine so that it might make it less of a struggle for him. He was still very much aware of his surroundings and wanted to talk a little.

I left his room briefly and called his father and said he had to get on a plane. He called the Dr. and he agreed. So he left Hawaii- headed home to Arizona- and then would make it to Boston. I just was hoping they would make it on time to say goodbye.

I called Dana- who had known that this might happen and had gone into work with a bag that had a change of clothes and enough things to keep her occupied so that she could be with me over at the hospital but not be in the room.

I called Mike and Nick. They came right away. They - who truly were his brothers in life- wanted to talk to him.

We all kind of hung around all day- in and out of the room off and on. At some opint I decided that I didn't care what the rules were I would spend the night there with my John. I told Dana to head home but leave the phone on. I checked in with Pat to see where they were at in their travels. I spoke to a few other people and then I pulled a chair up next to the bed and tried to settle my emotions down to speak to John.

We had many conversations that night- some of them not that coherent and others too painfully so. He had to keep sitting up throughout the night becasue he was so oxygen starved and the nurses kept checking his morphine.

About 5 am Friday he sat up and was very alert and I said to him, "Do you want to keep fighting? Or are you ready to go?" He replied, " I am ready. I just don't want you to have to go through this."

I said not to worry about me and that I would go speak to the nurse to see if they could make him a little more comfortable. I left the room and fell apart. I found the nurse and told her what he had said. Unfortunately John's mother would not let him sign a living will and so she said we would have to wait and see until his condition worsened what decisions would be made. I went back into the room. and John had seemed to have fallen asleep. I decided to let him be and go to the family room and try to sleep as well.

On Tuesday I got to the Brigham by 6am. When I got to John's room what I saw shocked me.

He could barely breathe. His arm had swollen up so that he couldn't move it. He was trying to get on a gurney so that he could go to ct but the nurse and orderly decided to give up after he couldn't gain the strength to get onto the gurney.

I had no idea what to do.

I decided to go across the street into work and grab a few things and come right back. I stopped and spoke to one of the nurses on the way out and asked her what she thought about his condition and she said it was time to circle the wagons.

I still didn't know what to do- so instead I fell apart.

I went into work and told them things weren't looking good but the dr. had not been in yet so I didn't know for sure. That I would be back later and keep them posted. When I got back to the Brigham he seemed to be doing a little better. His mother was on the way and so was the dr. We chatted a bit about absolutely nothing and everything. We talked about the wedding and about how our friends would get along. Kathy came- so i had to leave.

I went to go see my father at the rehab and then came back a little after lunch.

The Dr. had said the reaction to the chemo was what they expected and nothing was too alarming. So I thought things were ok. A couple of friends came to see him. The day passed and though I debated calling his father in Hawaii I waited since the Dr. said it was a normal reaction to all of the chemo. He had a roomate so after dinner and hanging around awhile more I left. We talked through the night a couple of times. He was getting more scared as was I. But I told him to try to rest and I would be there by 5.

Wednesday morning I got to his room and things had drastically changed. He no longer could breathe through just the cannula- they had switched him to the mouth mask which he hated. He kept sitting up trying to gasp for air. The look in his eyes said it all. He was petrified.

I went over to work after spending a little time with him and told them I would not be back until after he was gone. They looked at me like I was crazy- that he was only going through a rough patch with the chemo- but I knew better. I called his father and told him he needed to leave Hawaii. He said he would talk to the Dr. and see but it was probably just a rough patch.

I went back to the Brigham and by the time I got there they were switching him to a room closer to the nursing station. I called his friend Mike to come down. He did and we sat with him through the morning. By midday once again he was feeling better. Mike and Nick- who had gotten there as well- took me down to au bon pain to get something to eat. I realized I hadn't eaten since Sunday but was too nervous to really have anything. Nick gave me a book by Elizabeth Kubler Ross on Death and Dying and I remember thinking- is this really happening?

They convinced me to go to a mandatory training for work that afternoon- it was just next door and they would stay with him- plus his mother was due to get there and that meant I couldn't be there.

I went to the training and fell apart halfway through it and had to leave. I ran into his mother walking back to the Brigham and she said to go back to work- but I couldn't do that either. So I wandered around for an hour or so and then went backto see him.

He was joking around a little and they had changed him to a shovel mask so it didn't cover his mouth which he liked a lot better. They said he was still oxygen starved so they started him on some morphine. I spoke to his dad again who said the Dr. said to hold off on flying out here.

John wanted me to go home and get some rest so I left.

March 8, 2004

Sunday I was not able to see John so instead I spent it with a couple of friends of his trying to figure out how to get him out of the house and into a place that would accomodate him.

Monday- the 8th. We had appointments at the Farber. They were going to try a last ditch chemo. Or at least that's what I later came to find out. Originally they told us that it was something that they were going to try- just throw everything they had into it. It was a lethal mix of drugs. So highly toxic that it scared the both of us but John insisted on trying. He wasn't ready to give up.

Because they needed to monitor his fluid input and output they decided to admit him to the brigham. It took a few hours to get him admitted and settled in. But once he was in his room he became the John that I had been missing the past few weeks. He was flirtacious and funny, smiling and happy but in his eyes i could see he was scared.

I left late that night- around midnight. As had gotten to become habitual I called the cabbie that always drove me home and left him. There was no reason for me to stay and I would be back in the morning before work. Almost as soon as I got home I had 2 texts from him begging me to come back and spend the night there. I said no- I would see him again in 5 short hours and to just get some sleep and that I loved him.

March 6, 2004

On Saturday morning John's mother got called into work. Neither one of us had ever been as happy to be able to spend some time together. Kathy refused to leave John alone and arranged for his aunt to come over but she didn't care if i was there. I took the bus stopping at CVS for his favorite white cranberry strawberry juice and finally got to him.
He was in a lot worse shape than hen I had seen him at the farber on Wednesday and that scared me. We had to crank his oxygen up to high just in order for him to move from the bed to the couch. We snuggled up on the couch and watched a movie. I remember thinking - Is this the last time we are going to be able to do this? He fell asleep but i woke him up before I had to leave. We couldn't let Kathy see me so I left but told him I would see him at the Farber on Monday

so the anniversary is coming up...this year all the days match up with the days of the week which makes it a little more real to remember exactly what was happening. I am going to try to write about the events as they happened which will be the first time i have told anyone what really happened over the course of the week that changed my life forever... i need to get this out. I need to look past the pain that was and see the beauty that is left behind....

March 5, 2004

John had been given 1-3 months to live on February 17th. His father had flown out and his parents met with the Drs while john and I had sat in the infusion room. He didn't want to know the specifics of what was going to happen or what could happen. He wanted to keep fighting. He was so stubborn.
On the 1st John's dad and stepmom left for Hawaii for 2 weeks. John really didn't want him to go but Pat said nothing was going to happen while he was away and the Drs and John knew how to reach him. By the 4th John was having a hard time talking on the phone to me at all. He was at home and part of the time his mom wouldn't let him talk to me and the other part of the time he was too weak and tired to talk.
I said to John the morning of the 5th that I would be over that night. But John told me his mother was forbidding me to come over. That I would not be allowed to see him - and at this point we were both very scared that the next time I would see him he would no longer be here on this earth. I told him not to worry too much we would work something out. That was Friday.

So this week-- in the midst of a lot of soul searching and figuring things out (which by the way J just called and I didn't have the impulse to throw up so must be making some progress)- I was talking with a very good friend.
She said to me that I always bend to fit the guy- what he wants and if I don't match his criteria then I think I don't have a shot. So then she asked me what kind of guy do I want- what would be my criteria... and the only answer that I could give her was that I want John.
And that is the honest truth.
And that is the heartbreaking impossibility.
So now I am trying to figure out what about him I would want in another person. There were so many qualities about him that I loved.
All that it boils down to is that I still miss my best friend-- and I am still looking for that in another.... one day I hope to find it.

heartbroken

so J and I are no longer...
he met another girl... or I should say he has known another girl...
he is in love with me and loves me very much... but has known her longer and has started to fall in love with her....
I am heartbroken... but am happy for him and have no ill feelings whatsoever... wish I could be mad at him... I have to see him every day and it might help to be mad... but instead I am just sad....

I am back out and dating.. and I have hope... but mostly I am just feeling defeated lately... that I once had everything and now I have nothing... and all I want is the one person I will never be able to have....
hopefully one day someone will come along to change that....
in the meantime...

note to self

Dear Self

In case a time ever comes where you cannot remember this time in your life....

you are incredibly happy. happier than you have been in such a long time. joyful even.

you love.

you have beautiful people around you. both near and far. they are what make you. they are the reason that you have made it these past years and the reason that you will always make it. they make you laugh every single day.they love you and you them. they have added to your life in ways you have never imagined.

you have a job but more than that you have a job that you love. even when it aggrevates you to no end and you feel like walking away you love it too much to do that any time soon. your coworkers are some of the best people and you have fun there.

you miss him but not like you used to-- or at least not most days. but that's ok because it's not like you ever forget him and self you will never need to be reminded about that great man because he is a part of you and who you have become.

you have a life. a wonderful life. a life with meaning. full of joy and love and even purpose. a life filled with new life- filled with babies that are the most wonderful little humans you could ever imagine.

you love. and self that is the most wonderful discovery after these years of not knowing if that would be possible again. and even better you have learned to love
yourself.

there have been 14 babies born this summer in my life. 14 friends that have such beautiful babies. there are 8 boys and 6 girls and all of them are completely healthy (auntie kyle is completely broke from spoiling them too much).

to be surrounded by new life has been so wonderful for me. it reminds me that life can be beautiful and untouched by the negative. that sometimes it is absolutely perfect.

there is such joy around me right now and i just want to make sure i look back and appreciate this moment.

ps- everything with j is amazing

thinking in new ways

in typical fashion- i am kicking myself because i spent 3 years of my life trying to make c love me and he never did.

but now i am going to think in a new way

if i had just been with john and then with j (new guy) and not had c--- i would have never appreciated what a wonderful man j is.

going from a good guy to a good guy would have never taught me anything

going from a good guy--- to a not so good guy--- to a good guy-- has taught me everything i ever needed to know--- at least for now

i had posted this on f---book at the 5 year mark. i don't ever want to lose it so am going to post it here too.

How can it be 5 years?

Five years without his voice, without his laugh, his smile, his words, his love. Five years of missing him, of missing us, of missing the person I got to be with him.

Five years of watching some of the people in his life come and go out of mine. Not being ok with that because they are my only links to him. Learning to live with it anyway. Knowing his friends have moved forward- gotten married, bought houses, moved, had babies—thinking how much he would have loved all of it. Realizing they struggle just as much as I do sometimes.

Five years of wondering what would have been. Would our wedding have been everything we were planning? Would our marriage have been everything we hoped for? Where would we have ended up living? Would the dream of Isabella or Anthony/ Andrew/ Michael have happened yet? Would we have been happy?

Five years of time marching forward. He would have been 35 now. Instead I have outlived him by a year and a half. That was never supposed to happen. When you fall in love with an older man- he is always supposed to be older. Instead- he is forever 30. Who dies when they’re 30? How does that make any sense at all?

Five years of making mistakes. Of being the one left to live life and therefore coming to some incorrect decisions. But also five years of learning to live with the mistakes and to keep on going. Time spent second guessing. Wishing that there could be some do-overs in life but knowing that sometimes it’s just not possible. Hoping to take some words back and wishing that others were said. Missing a lot of people and not just the one that is forever missing.

Five years of walking in the doors to work wondering why couldn’t they have saved him? They are able to save so many. How is it possible that these wonderful people were not able to save him? Aren’t they the best in the world? Shouldn’t that alone have been enough? Living a dual life of loving that place because of the comfort, friendships, and memories it offers but also hating its very existence. Wondering when his nurse practitioner will stop looking at me with that look in her eyes. I hate that look. I hate that they still feel just as guilty as I do. That they let him down. That I let him down. That they let me down. That we let everyone down.

Five years of hoping that my love was enough for him. Wishing that I knew for sure.

Five years. 60 months. One thousand eight hundred twenty five days. All that time spent trying to picture him in my head. His big brown eyes and funny smile. His scratchy goatee and his soft hands. Trying to hear his words in my heart. Remembering the good – dinners in the north end, immeasurable amounts of sushi, kisses after baseball games, a turkey party with friends that were (and still are) family, endless monopoly games in hospital rooms, Christmas with the nutcracker in the background, valentines with pearls and a specific black dress, weekends full of friends calling and visiting, a diamond ring that meant more than any carat size ever will. Fearing the nightmares of the bad- oxygen masks, chemo bags, canes, walkers, wheelchairs, no more options, last words, struggling for breath, wake, funeral, burial, death.

Five years of loss, laughter, memories, love. Five years of knowing no matter how many times you say you love someone it will never be enough when they are gone forever. Five years of lost innocence. Of knowing that other people are so lucky to be fairly oblivious to this kind of pain. But also five years of learning that the pain doesn’t kill you. The pain is just the reminder to cherish what is still here. To appreciate the people that haven’t died, but instead keep you alive with their compassion for you. To appreciate the new ones that come. To be surprised by the people that show up that you would never have guessed would and to be disappointed by the ones that just disappear. To remind yourself that you have to move forward, you have to open up again. That life is not just full of pain- it is full of joy too. It is full of finding the balance between missing him and loving another and the wonderful discovery that it can be possible with the right person and it is ok to live forward. But always, always, always missing the one that is gone.

Five years of wishing for just one more conversation, one more laugh, one more hug, one more kiss, one more smile, one more anything. Coming to grips with the reality that none of it will ever happen.

Five years. I miss you John. I miss you. The you that only I knew and the person that made me the happiest I had ever been. I loved you and still do more than you may have ever known. I remember you today and every day for everything that you brought to my life and everything that you took with you when you left. Thank you for being my confidante, my love, my best friend. Life is not the same without you- it never will be. You still live in every space of my heart and always will.


----------------------------------------------------------------------------------

My life is so different now than what it was when i wrote that.... however i do believe that the balance of loving another is still possible.

last night i was on te phone with J. He said to me that if he had the chance he would love to hug John and thank him for being the best thing in my life- and making it possible for me to love the way i do.

the tears formed in my eyes but then they stopped because there is really nothing but joy here. There has been a lot of pain in the past year or so- but now there is only joy. joy and love and gratitude for what was- and what might be.

I miss him still- i always will. But there is a hope about me that makes it impossible to focus on what is gone. For the first time in a long time I think that my dreams may in fact come true.

to Alicia--- a long time ago you left a comment here about your relationship with a man that was similar to C- that you struggled with some of the same things that I was struggling with. And after you broke up you met your husband. You give me hope. You always have.

in case anyone still reads this....

the chapter of my life that was c. is over. i ended it. we wanted two very different things and i was not willing to wait for him to want what i need.

however- it seems as though someone had been partially waiting in the wings. i have known him for a very long time and i love that he gets me and has known me and knew what i went through with john. he was there then just for me-- not for the memory of him.

he is there now--- but for the both of us.

c has been feeling pretty sick lately. not sick like a flu but sick as in a number of things that scare the both of us. blurred vision, forgetting things, tired all the time. things that aren't like him. he is headed to the dr to be checked out

at the same time he said to me- don't worry - if it is something bad you are still young enough to start over. and then the truth came out....

i don't want to start over-- never again

i know i can't say never but i can't even picture having to start over- not again

i know that people that don't understand this world think that it would be easy enough to just try again- but we know. we know the days and nights of unbelievable heartache. i know my strength and limitations - that i just don't have it in me to do again

he of course realized as soon as he said i what he said--and the poor man's face turned green as anything. he apologized profusely.

but still it doesn't change the fact that i don't think i could handle going through anything like that again- at least not anytime soon

vacation is good--- i am realizing exactly how much exhaustion i have built up in a year and a half with no time off . glad i took 2 weeks as i am still pretty worn out.

there will be some more posts coming in the next few days. i have big plans. first though a trip to the beach :)

staycation

i am so excited!!

i do not have to step foot into work for 16 days :)

my first vacation in a year and a half which i cannot believe

what am i doing with all this time?

ABSOLUTELY NOTHING!!!

spa day tomorrow, movies, library, books, beach, friends, c

just the thought of all of these things is making me unwind just a little bit

um

ok so you know how everyone has that one friend in life that is your fallback person- in my case a fallback guy. you know the guy you can't stay away from and sooner or later iwll probably end up with.

well i just found out my fallback guy got married.

therefore taking away his title of fallback guy

which means nothing really- haven't seen him in about 4 years.

but it has thrown me a little- i mean i know i will be with c. probably forever but still. i need to catch my breath.