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Michael is still confused but his communication is sweeter today.

He said to me, “It’s time we got ourselves up out of this house.” and I said, “Where do you want to go?” and he said, “Let’s ride up to Billy’s Chowder House.” Ride means motorcycle. Drive means car.

This is something we did in 1999. Two friends of ours from California were coming for their first tour of the East Coast. We had suggested a lot of different places for them to see on their whirlwind tour. One of those places was Ogunquit Maine where we spent every 4th of July (Michael had a tradition with his oldest daughter of spending 4th of July day at York (Maine) Wild Kingdom and then going to Billy’s Chowder House in Wells for dinner and then seeing the fireworks on Ogunquit beach. I had only known him a short time when he invited me up on July 4th and seeing him interact with his daughter and her friend and knowing that he had “created” this special time for them every 4th of July really put me over the top about how I felt about him.)

So when friends of mine called in 1999 and asked for a place to see the Atlantic Ocean, I recommended Ogunquit right away. We decided to meet them and introduce them to great Maine seafood at Billy’s. It was a nice night so we decided to take the Harleys. It was a beautiful ride up and we met them at Billys and had a great dinner and took them (on the bikes) back to their place near Ogunquit Beach.

The four of us walked on the beach and talked and joked and it was a beautiful night. We had coffee before leaving and then Michael and I left and drove home along the ocean.

The moon was full and the night was clear and the ocean was magnificent. And we rode along just soaking it all in. We took our time going home and hit as many seaside towns in Maine, New Hampshire and Massachusetts as we could. I think the one hour (by car) ride took us over 4 hours that night. And we loved every minute of it.

Today Michael was there. Wanting to go to Billy’s Chowder House on the bikes.

I indulged him his memories. I talked lovingly about that night

and I said, “That was nice night, wasn’t it?”

and he said, “Nothing better…..Harley….Billy’s…..and….You.”

And I turned away before the tears fell.

Michael is more alert. Our new caregiver has been plying him with food for the past 3 days (the man is a saint!). This morning he woke up and started talking in a clear, loud voice (much louder than his normal voice) and announcing to me that I have betrayed him, left him on a stage to freeze to death.

I know it’s the tumor and that what he’s saying is nonsense. I told him I loved him and wanted to take care of him and he said, “For now. And then you’ll just throw me out like garbage.”

So un-Michael like. And I have to say it stung. Really stung. I felt like I was slapped. Hard. To be grappling with losing him and now he’s just so angry at me in a way he’s never been before. Even though I know it’s not him, it still hurts.

I gave my caregiver a book called “Final Gifts” yesterday which was written by two hospice nurses and he had just read about this behavior in the dying even without brain tumors. He says it’s about them distancing themselves from the people they are getting ready to leave.

woo boy.

I was so glad to see him rebounding but he’s really angry right now and I don’t know why. The well Michael and even the sick-until-this-point Michael has been a “roll off my back” type. I’ve never really seen him so angry that he would be spitting hurtful things at someone like he is now. Especially me.

I assume it is part of the dying process and I will continue to soothe him and tell him that I love him but it’s hard.

It’s very hard.

Thank you everyone for your support. It really means a lot. The comments are emailed to me and it helps me throughout the day to look down at my Blackberry and see one. So thank you for that.

I had all the kids and the grandkids here yesterday. The weather was beautiful and we had a nice time. Michael slept through the little boy pandemonium.

I’ve shared that my life feels surreal right now. The release of the book is just about the most wonderful thing and Michael’s condition and inability to share it with me is the most horrible. That they’re happening at once is almost too much for me to absorb. I pingpong between dealing with the two things and then taking time off from everything and everyone. Trying to just be is really tough right now.

this morning I woke up early and as I wiped his eyes and gave him some meds he looked up at me and said in a barely audible voice, “I love you sweetie.” and I bent down and kissed him and said, “I love you too.”

I consider each chance I get to say that and hear that to be a bonus.

I slept on the couch last night next to Michael’s hospital bed. I even moved it close so that I could hold his hand while he slept.

About midnight his hands and feet were freezing which is a sign of the heart working hard to get blood to the extremities. He hasn’t eaten since Monday morning and I’ve been squirting liquid into his mouth via dropper but he’s only taking a little at a time.

At 3 am I heard a bit of a rattle in his chest which was faint but woke me up. I turned on the light and looked at him. He opened his eyes and winked at me which is what he did in September when he came out of the initial coma. I said “Hi honey, how are you?” and he said, “Oh I’m okay.” which were the first words he spoke since Tuesday morning. The tumors are mobile depending on how much edema is in the brain so depending on how and where the tumor is moving, he has different abilities and issues. So I never know.

I sat there and held his hand which was freezing at first but as I sat there holding it the warmth came into it. I spent a long time pushing juice, via dropper, into his mouth and he seemed very comfortable and happy. Every time I moved to get some juice of move the blanket he would reach for my hand. There was no desperation to it, just a reaching out that, had he not been in a hospital bed, would have been an ordinary Michael move. I sat with him for about 2 hours and when he went back to sleep I moved back onto the couch.

He’s still sleeping and I don’t know which Michael will wake up or what today will bring but I’m happy to have had that 3 am moment.

I did two things today I hadn’t done before. I let my firm know how serious Michael’s condition is and I spoke to a funeral director. Hospice said they had wanted to talk to me about that (funeral arrangements) but they knew that until today I simply wouldn’t discuss it. And they were right. It was funny that they brought it up after I had already done it on my own.

Michael’s fever came down but he’s not responding much.

It’s odd, to me, that right before (and I’m talking hours) before Michael started to deteriorate I started to think that if life were good or fair or just to him that the journey should end. I am not at peace at all about this but something in me shifted. I had spent a lot of time Wednesday and Thursday starting to prepare and telling myself I’ve already lost the person who was there for me….as my trips to the dentist and doctor, alone, suggested. I was preparing myself for the shift to “alone” as well which, to be honest, I hadn’t really been doing. I had just been railing against it the past 8 months.

Michael and I have always had unspoken communication, just a level of understanding that has always gone beyond words and most times well beyond reason. I never said anything to him or indicated in any way that I was ready to let go because I’m really not. I just started to shift, in my head, toward that. Baby steps.

And just as I did Michael took baby steps away from me. I don’t know which came first or whose intuition first kicked in. But I’ve thought about it a lot over the past 5 days (this all started on Friday)….the closer I came to finally acknowledging that I have been without him for so long now and that Michael might be hanging out and hanging on just for me and that’s not really fair…he started to turn away.

He would not leave me for a million years if he could help it and I know his fight a lot of times has been for me and Gina. He even tried to go back on chemotherapy, even though he really didn’t want to, because I asked him. He couldn’t really swallow the pills. He hated them. And he relented and gave in. When I saw his willingness to do it for me I only gave him one dose and then when he struggled so, to choke them down, I said no more. It’s okay.

It’s as if we’ve tried to balance it for each other and for ourselves. True to our relationship and how it’s gone all these years. So I don’t know who turned first or if it was just some thing on each of our parts that was doing our familiar dance. But it was not until something inside of me whispered “let him go” that he started to let go of me.

I don’t know. But as I took his temperature every 15 minutes for the past 36 hours part of me was willing it down and part of me was trying to be okay with it going up. The struggle in me is still there and yet I try to keep it away when I’m with him. But he knows. He always knows.

We have the TV on for Michael 24 hours a day. He always liked to fall asleep on the couch to the TV and since he’s been sick, it’s always on for him. I know he likes it and I feel comforted, when I have to go upstairs, that there is a light and a distraction should he wake up. A constant light on for him has been a priority of mine. When I had the caregiver from hell I had to tell her never ever turn off the TV. I was adamant about it.

I somehow picked a funeral director out of the blue…but like my dentist I picked the right one. Hospice told me that the funeral director that I picked brings the person back to the funeral home with him and when he gets the person there he lights a candle for them and keeps it lit the whole time they are there so they will never be in the dark. I have no idea why that touched me when they told me, but it did.

Because Michael deserves a light always on. The way he lit up my world when he walked into it. He deserves the light on.

Michael has been low energy and no appetite for the past few days. Today he woke up with a fever (100.9), coughing, congestion. I’ve never known him to have a fever. He’s had a cold maybe once the whole time I’ve known him (and I’m not even sure about that).

No one here is sick and I don’t know how he picked up a bug. He’s hungry but can’t seem to eat. I’m off to get him some Carnation Instant Breakfast because he’s drinking well enough. This is a development I hadn’t planned for. The last thing I want or need is him going in the hospital and I don’t want to make/not make that decision. I promised him I would not let him go back there (unless he had seizures that could not be controlled at home). Very upsetting to me.

UPDATE: 4/22 Michael continues to have a 102 fever. He had a few minutes last night where he blinked when I asked him to do so if he could hear me but it was once. I had asked him about 100 times. He didn’t respond to me or Gina most of the night except for that one time and that was with me sitting there talking to him for hours. I said to Gina, I think he blinked just to shut me up. She laughed through her tears.

Hospice was out last night. He doesn’t have a cold. The congestion etc is the progression of the cancer.

Because he’s not drinking (I’ve been squirting some liquid into his mouth with a baster but most of it dribbles back out) we went to liquid meds. The doctor prescribed a low dose of morphine to regulate his breathing which is rapid and shallow and liquid ativan to ensure he doesn’t seize.

We’re thinking he’s not going to rebound from this. I’ve been trying to keep it together to deal with nurses and the kids but inside I’m screaming. At the top of my lungs.

I hurt my foot on Thursday and expected it was sprained and would get better. It did not. I hobbled around the store today and on the way home my foot was throbbing. So off to the hospital I go. Did I mention I hate hospitals?

I was in the room next to where Michael had been after his seizure and my xray tech was the same guy who did Michael’s last MRI. I was in a room with a snotty 12 year old boy who spoke to his mother in a way that, had it been one of mine, would have needed to see a doctor. I was thinking what is wrong with this mother to let this kid be so rude? To her. To the nurses. To everyone.

I was sad sitting there. All alone again. But it wasn’t quite as bad. I am sorta resigned to it.

I sighed a lot.

The foot is badly sprained and one of my bones is bruised. The foot is very swollen but they gave me a boot. And more painkillers. The pharmacist is going to think I’m some sort of addict since the dentist gave me painkillers on Tuesday.

I was out of work all last week with my tooth so I have to go tomorrow. Hobbling.

Michael is a bit low energy today but I’m going to try to get some food in him and later on get to bed early.

And turn the page on this week.

I hope.

Update 4/20: I went to work today and coming home I was hobbling around the rain soaked, wind soaked sidewalks of Manhattan. The sock on my booted foot was soaking wet and I had an Ugg boot on the other foot, also soaked. My umbrella was blowing inside out and the rain was coming down in torrents and sideways so there was no escaping it.

I was then hobbling on a rain slicked dock to get the ferry and thought if I could just get close enough for the captain to see me he wouldn’t leave a disabled woman on the gangway. He didn’t look pleased or happy waiting for me as the rain and wind almost knocked me into New York harbor while I tried to RUN with one sprained foot and the other wrapped in soaked lambswool.

Yeah, things aren’t changing so quickly.

I woke up yesterday with a toothache.

Easter had been nice with the family and after everyone went home Gina and Michael and I watched The Full Monty and when it was over, I did a little dance for Michael to Hot Chocolate’s “I Believe In Miracles” which plays as the credits roll. Michael laughed and Gina laughed. She doesn’t normally see me like that. I’m the no-nonsense mother. She (and just about the entire world) doesn’t normally see the playful side of me. Only Michael has really seen it because he’s the only one who has ever brought it out of me.

On Saturday I felt fatigue. Mental, physical and emotional fatigue. I felt as if I had turned a page in this chapter…a feeling that maybe, after 7 months, I was beginning to realize I need to start letting go. Just the feeling that I don’t want to, but as a grief counselor, I know I have to. I always feel disloyal to Michael when the grief begins to annoy me. When I get the very real feeling that I’m just so sick of the grief.

I know I have to get there and everyone knows I know it. But I haven’t been here or wanted to be here. But after a while people just wear themselves out with grief. I thought that was happening to me. I was just worn out with all the extra responsibility, trying to keep it together, and grieving every minute of every hour of every day. I try to keep at bay how very hard this is and has been. I always feel like I’m going to collapse under the weight of how very hard it has been.

I just felt fatigued and for the first time since Michael has been sick I didn’t want to have everyone here. I wanted to see all the kids but not really wanting to go through cleaning, cooking etc. But I have wonderful kids and Nick and his wife Kristen did most of the cooking. They went to the store twice and Michael went once. And everyone helped cook and serve and clean up.

Of course it was wonderful to see the little boys and Mattingly, Nick’s puppy. So it turned out, despite my feelings about it, to be a lovely, lovely day.

So Sunday was a great day, but I woke up Monday and had reverted back to the fatigue I felt on Saturday. Mentally and emotionally drained. I brushed my teeth and my back tooth hurt.

I take care of my teeth but haven’t been to the dentist since Michael got sick. By midday I was having some sensitivity when I ate and by the time I brushed my teeth to go to bed, my mouth was on fire.

I woke up Tuesday morning from the pain. I went to work for a few hours and then booked myself an appointment with a new dentist because my dentist is not in this week.

I took the subway uptown and had next to no patience for anyone or anything. There was a thuggy looking guy sitting across from me and when he shot me a look, I shot him one back and he looked away. That’s right. Don’t screw with me today buddy.

I walked in and the hygeniest said he would see me right away to take my history.

This dentist, who was practically randomly selected, brought me into a cozy office and wanted to chat about my dental experiences and what was going on for me now. I had been traumatized by a dentist early in life and had some setbacks but have actually gotten to the point where I can (almost) sit still for a cleaning with no anti-anxiety medicine or nitrous oxide.

It’s funny that I’m always trying to get this information to dentists before they do something that will send me scurrying out the door and here he was genuinely interested in it.

We talked about trauma for a while…the fight or flight response…very different experience. In 2000 I found a great dentist in California who did a lot of work but I never found her equivalent on the east coast, but I went anyway.

I told him about my dentist in California and said that after I had all that work done I went to the dentist regularly but hadn’t been to the dentist since Michael got sick.

He asked what Michael had and I said he had brain cancer. The dr. asked what kind. I said anaplastic astrocytoma. He said his dad died recently of a glioblastoma and he told me about his dad and I told him about Michael. We both had tears in our eyes as we talked.

After xrays the dentist explained that the tooth had had a root canal but it was infected. We discussed various options and decided to extract it and put in an implant when the infection clears. Because it’s the very back tooth it might take some digging. He suggested that I be sedated. I signed on for that. No need for dental trauma.

He said I would need someone to bring me home.

I said, “I. Have. No. One.” and burst into tears. Not a small amount of tears…gushes of tears. Something from so deep down that it startled even me. Something so odd for me to do in front of someone I don’t know.

I thought about a car service and he said he would make an exception for me but really encouraged me to have someone come with me.

My son Michael comes down every week to help out but we’re so behind on the stuff in the house it’s not funny. It’s just too much for someone to do one or two days a week. The other boys try to help out but with families and jobs and school….it’s hard…it’s just hard.

I eventually got it together enough to take the bus home and the bus driver, despite the fact that I told him, before I boarded, where I was getting off, blew past my stop. I asked him to stop and he stopped a long way away. I normally say thank you when I get off the bus (habit I picked up in California that is almost unheard of in NY) but I did not. I was just so pissed.

I was walking in the rain and cold and the dark. The words I. Have. No. One. kept ringing in my head. Tears were running down my cheeks. And I realized I hadn’t turned the page I thought I had. I sat in the car and sobbed and sobbed for about 15 minutes and then cried most of the way home.

Coming in the garage I inadvertently ran over the garbage that didn’t go out last week because I missed the garbage truck by 10 minutes. I looked around. What a mess. I thought I really need to do something about something. And felt powerless to do much of anything about anything. And cried some more before I tucked in all my grief and went to greet Michael.

With a smile.

“Oh there you are,” he said. Yes, I was running about 45 minutes late and he noticed. His time sense is off with the brain tumor but he could tell I was late.

“I missed you.” he said.

I turned away for a second to hide my tears.

But I sucked it up and turned back to him, again with a smile. I bent down and gave him a kiss on the cheek and said, as upbeat as possible, “I missed you too.”

You have no idea how very very very very much. No idea at all.

It’s funny that the core issue of mine was always fear of abandonment.

By the time I met Michael I not only had worked really hard to be there for myself but was healed enough to pick someone who would not abandon me. It was something that I really couldn’t even imagine during all my failed relationships. I thought I would always need more than anyone could possibly give. I always thought I had some insatiable hole in me that could never be filled inside or out. But I did everything I could to fill myself up and, as is the paradox of having a good and healthy life that I talk about all the time on the gpyp blog, I met someone who gave to me rather than take from me.

Michael showed me who he was the first time I woke up in the middle of the night. He was up like a shot, asking me if I was okay. Most guys I’ve ever known hated being awakened during the night even if I was freaking out. They wanted to sleep and they wanted me to do the same. Even the most supportive eventually showed irritation or said go back to sleep long before I was ready to do that.

The first time it happened with Michael, I didn’t wake him up. Even the most patient of people don’t usually like to be awakened in the middle of the night and, over the years, I had learned that to insist that they did was unreasonable. Early in my relationship with Michael I was just uncomfortable and a experiencing a little bit of free-floating anxiety. I didn’t wake him but I was moving around a bit and wide awake. Michael sensed this and was up and asking if I was okay.

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We have the results of the MRI which shows that the tumor is slightly larger than it was in September. It had shrunk after radiation and chemo but now it’s growing again. But we don’t know when it started growing. If it started growing in January, it’s growing slowly. If it started growing again last week, its growing fast. So we don’t know.

Michael’s new energy has him asking a lot of questions. For a long time it seemed as if he had either given up or didn’t care. Now he’s asking about the MRI, asking what else he can do, saying that he wants to go on chemotherapy again. He said, this week, for the first time since November, “I don’t want to be sick anymore.” But he is saying it not like someone who is giving up but someone who is getting a second wind and renewed dedication to getting well.
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