Peace

(Geoff writes) By Sunday morning Susan was lying comfortably in bed with a view out on the water, though most of the time her eyes were closed. Her breathing was labored but when I asked her she said she could feel nothing. Her brother and family and my daughter and husband arrived. Susan's long time friend was there also. We knew she was slipping away to some other place where there would be no pain.

Eventually many close friends came to the door until our little home was full of warmth and love. One of our neighbors played his guitar and tears were shed. I'm convinced Susan heard and felt everything. She waited until the last guests began to leave and finally let go.

But she is still here and likely will be for a long time. Her toothbrush is still in the bathroom. Her pillow is still on the bed. Her presence is all over this place and it's comforting that I'm not alone. I'm certain this is nothing new to others who have gone through this same experience.

Monday I was gently kicked out of the house by her friend Mary who wanted to wait for the people to come for the hospital bed and unused medical supplies. I went to the funeral home to arrange for the cremation and then went on a 70 mile bike ride to think and not think at the same time. You know, I still had that feeling that she would be wondering why I was out so long and did something happen to me.

Later there will be an announcement about a Celebration of Life for Susan.

Love you all. Take care of each other.

Angels

(Geoff writes) Susan has pretty much stopped eating. It's not because it makes her sick. It hasn't. I've been reading a lot about patients' behavior and signs to look for. Not eating for no apparent  reason is one of them. Sleeping is another, and she's been doing a lot of that over the last several days. I have a monitor I use but she doesn't stir much during the night. She used to want my attention for one thing or another about 3am. Not so much now.

Her brother and family visited yesterday. She lit up when they came and it was a good visit. She had a "zoom" with her sister on the West coast a couple days ago and that was also very good. For both of them.

Today the Visiting Nurses are going to change her pain meds from liquid morphine to something she will tolerate better, to be administered by a pump through her port. It will deliver a constant stream of relief that she can easily regulate, if need be. I can't say enough good things about the VNA. They should be called the Visiting Nurse Angels.

Home Health Aide/Angel at the door. Gotta go now.

Remember that room upstairs I was painting last week? Well it's finished and I just thought that perhaps Susan will never see it. I can't dwell on thoughts like this. She can see the ocean from her bed. 

Susan says,

Love you all. Take care of each other.

Trust

(Geoff writes) Being at home is great for Susan. She has visitors coming and going most of the time, friends and neighbors, nurses and social workers. So I have been kicked out of the house more than once to do "my stuff". That's a good thing. Yesterday I went on a longish bike ride, guilt free.

Today UPS dropped off two giant boxes full of stuff that the VNA ordered for us, way more than I have room to store in this little house. There're boxes of surgical gloves, bed pads, mouth swabs, ointments, and more. I'll have to make room somewhere. Hmm, in the empty hot tub? Maybe the back of my pickup truck? How 'bout the shower that no one uses?

All of the visitors from today have left (four in total) and I am about to gather things for supper. I don't know what she'll eat tonight, or how much. Last night we had home made pizza that P&J brought. It was very good but after only a few bites Susan nearly did a face plant and slept right through the Celtics game. It must've been the two sips of red wine she had! I finished it for her. The pizza, not the wine.

Tomorrow the VNA nurse comes and I may learn some more care giver tricks. Never did I expect to have to learn how to make a bed with someone in it, or change their clothes, or other things that she cannot do by herself. I'm ok with these things mostly because Susan is ok with them also. I'm still not proficient, but I'm getting better, and she must trust me. Now I have to wake her and see if she wants some home made soup that Suzie brought!

So, as Susan says,

Love you all. Take care of each other. 

Homecoming

 (Geoff writes) After over a week in the hospital, first in ICU and then Palliative Care, it is clear that all the tricks have been tried and there is nothing more they can do that can't be done at home, that is to keep Susan comfortable. She's not comfortable in the hospital because it's, well, a hospital after all. VNA Hospice Care met with us Friday and had arranged for a bed to be delivered Saturday morning and Susan to be transferred home in the afternoon.

And everything happened exactly as planned. The bed was delivered, Susan was delivered, and the Hospice nurse arrived to talk to us and give instructions for all the things I/we had to do. She suggested I get a baby monitor, a pregnancy pillow, and baby wipes. My nephew Keith sprang for the monitor, bless him. Now I've got to figure out how to use it. First instruction is "charge for 16 hours before starting". Shoulda told me that 16 hours ago. So I have to sleep tonight with one eye and one ear open?

I must say that Susan was very happy to be home. No more IV, no more waking in the middle of the night for a vitals check. Oh, and the food should be better, not to mention more channels on the TV. Maybe she can piss away all that fluid buildup that's causing her so much discomfort too.

As Susan says,

Love you all. Take care of each other.

A Little Help From My Friends

(Geoff writes) When I got to the hospital this morning our neighbors Eddie and Cindy were there, Eddie with guitar in tow. He played his favorite Beatles song and a few instrumentals and Susan loved it. He also played here yesterday to a larger crowd, minus me. I was taking advantage of the sunshine (remember that?) painting a room at home.

She had visitors most of yesterday and by late afternoon she was junk.

This afternoon we had a discussion with hospital staff and each other about the near future. The doctors have suspended chemotherapy because it will not serve her needs while the infection is still present. That is a Catch-22 because the antibiotics can only control the infection, not eliminate it. Susan refuses to go to a "facility", preferring to go home. I don't blame her one bit. So what does that mean for us?

Fortunately we have a place for a hospital bed on the first floor and proximity to a bathroom with a shower should we need it. If we opt for hospice they will only administer drugs that keep her pain free but their services are fairly extensive. They provide bed, equipment, and nurses, though not 24/7. That's me and my army of volunteers!

So none of that will happen over this weekend because...Chritianity. Then there's April Fool's Day, voting day in Fairhaven (really!), and the eclipse, during which, if this weather continues, it will rain.

As Susan says,

Love you all. Take care of each other.

Mixing Friends

(Geoff writes) Yesterday a whole bunch of folks wandered into Susan's room. It was a mixture of work friends of years ago and bike group friends and neighbors. And me. Susan had a good time listening and tossing a few thoughts into the mix. Eventually they kicked me out so I could have some time to do ME things, or so they said. When I came back later I discovered they'd done her nails! So much better looking now.

Today she is having a tougher time. The meds are getting heavy now as they are trying to even out her heart rate, which races every so often for no reason. The pressure in her lower belly bothers her and there is a whole library of pain medication for that. Yesterday they took a sample of the fluid in her belly to be analyzed but that takes a couple days to culture. While they had a tube in there they were able to drain over 300cc and that relieved some pressure.

She still wants to get the hell out of here and I can see that, but she needs to get some strength for that.

I just took a break from here around 1pm and I came back to an empty room. I'm sure she didn't break out, her stuff is still here. She was supposed to have a scan tonight. Maybe they got her in early. I'll have to wait and see. The husband of Susan's roommate is also waiting here in the emptiness. His wife went to the OR just before I left. Here we sit abandoned in a big, empty room. At least we have a water view!!

I just need to let you all know that I won't post unless there is something that needs to be said. Posting "same shit, different day" just doesn't make a lot of sense to me. So please don't panic if you don't hear from us for a few days in a row. 

Family Day

(Geoff writes) Today was family day, at least in Susan's room at St. Luke's. My daughter and her family came for a nice, long visit. They had all just returned from Mexico where they were doing volunteer work in a border village, a real learning experience for them all. They brought back stories and pictures to share.

Then Susan's brother and sister-in-law showed up. Susan was tired and weak but she did enjoy the conversations and she didn't have to say a thing, just enjoy the company.

The medical team had decided earlier in the day that the SICU was no longer the right place for Susan's care. She has been stable for over 24 hours and no longer needs medication to keep her blood pressure up. So after all the family had left they packed her up and sent her down one floor to palliative care. This ward is quieter, if you can believe it. Her new roommate even asked permission to watch her own TV! So when we watched the Celtics' game together tonight we barely cracked the volume on the tiny personal speaker. They won, by the way. They've been doing that all season. I used to be, at best, ambivalent about basketball. They run up the court. They run down the court. Ho hum. But it's one of Susan's favorite spectator sports and she kinda taught me how to watch and enjoy it.

We have been getting lots of cards in the mail and well wishes in our emails. She must be on dozens of prayer lists too and I want to thank all of you for thinking of her and telling her so. I think we belong to many families, not just the ones we are born into. Susan has her theater family and we both have our biking families, and friends we've made over the years. I know these connections help to keep me from going stark raving mad in the face of all this tsuris. (That's three!!!)

As Susan would say,

Love you all. Take care of each other.