Tuesday, November 27, 2012

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.

Tuesday, March 16, 2010

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.

Saturday, March 13, 2010

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.

Friday, March 12, 2010

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.

Thursday, March 11, 2010

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.

Monday, March 08, 2010

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.

Saturday, March 06, 2010

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