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.

One Step Forward, Two Steps Back

(Geoff writes) The procedure I spoke about yesterday was scrubbed today in fear that it was too risky and may cause a bleed that would only spread infection. So they are going to stick to antibiotics and hope for the best. Susan's oncologist said that the way the pockets are walled off from each other in her liver makes antibiotics a less than perfect tool. 

The team that is working with her is talking more about making her comfortable than treating the cancer. Since the chemo therapy has been stopped the cancer has only been growing and there are indications that it did nothing significant anyway. 

This is bad news, for sure, and I am sorry to have dragged you all through this tsoris. (There's that word again!) If you want to visit you can. But Saturday is booked this week.

As Susan would say, 

Love you all. Take care of each other.

Susan, we love you back!

Two for the Price of One

(Geoff writes) It occurred to me that maybe I forgot to send a broadcast re: the latest installment. Sorry 'bout that. All that money you paid to subscribe to this blog and they totally ignore you. The nerve!

To follow up on the weekend's tsoris (See? Susan has taught me some Yiddish!), she does, in fact, have an infection. Two different bacteria have infected her somewhere in her gut. Tracking it down was the hard part. CT scans, Ultrasound, and finally an MRI uncovered the little buggers. Tomorrow they will gear up and invade their lair and suck them out of a pocket they have created in her liver. Meanwhile the antibiotic bombardment continues.

Susan has been allowed to eat now that there are no more tests. That will take some getting used to. The hospital cooking that is. Tonight's fare was a baked potato, a slab of breaded chicken, and peas, which after Lima beans is her least favorite green vegetable. All of that went untouched. The kale soup on the side was acceptable but she is pretty weak and wasn't able to finish it. I helped.

To keep myself busy, something they tell me I need to do to keep from obsessing about Susan's condition. I need the serenity to accept the things I can't change, the courage to change the things I can, and the wisdom to know the difference. I have several projects going at home. I can't do anything about cancer but I can patch holes, paint, rebuild this disintegrating laptop (it's always the hinges, isn't it?), and various other domestic chores. I made a bunch of dinners that are filling up the freezer for when I'm too tired or lazy to cook. My big indulgence is my bikes. I still feel some guilt about riding the way I like to during this period. Going back and forth to the hospital in New Bedford by bike is fine but it's nothing like a soothing 50 mile ride down through the woods and meadows of Dartmouth or the Westport seashore. Then there're the cranberry bogs of Rochester and Wareham. I've missed a few nice days in the last couple weeks, but some things are more important than others.

What a Night

 (Geoff writes) Susan slept like she's never slept before. It was after noon when she started stirring. When I saw her I realized something was very wrong. Yesterday she had eaten very little and complained that she was aching all over but her vitals were within normal limits. Today (Saturday) she was staring vacantly into space and just wouldn't answer any of my questions. She was very weak and trembling slightly. Then she said "Where am I?". Later she repeated the same question and by then I had put a call in to her oncologist. Then she said "I don't know anybody". That scared me.

The oncologist called back and after discussing what was going on he recommended a trip to the ER, Susan's least favorite place in the world! She was going to kill me. I struggled with that for a short time and then made the call to 911. There was no way I was going to be able to get her downstairs and into the car by myself in her condition. 

At St. Luke's they took her right in and by the time I got there she was wired up and a plan had been hatched. Now she was running a fever, her BP was low, and her heart racing. They treated it like an infection, taking blood samples to send to the lab. Antibiotics and Tylenol brought down the temp and after an hour or so her BP and heart rate returned to normal. Eventually she came out of her stupor and started talking, asking questions like "How did I get here?" She didn't remember the four Fairhaven EMTs and police officer that carried her down the stairs, the ride in the ambulance, or the admission to the ER! 

I sat with her until well after midnight and though the ER was not very busy, there were no ICU rooms to put her in tonight. Hopefully a room will open up in the morning. What a way to celebrate St. Patrick's Day, right? You're supposed to end up in the hospital after it's over, not before it starts. 

So now that I've had a little sleep and a shower I'll make my way to St. Luke's and see my bride. And to my little brother, who's birthday is today, see if you can have a happy one. 

As Susan would say, 

Love you all. Take care of each other.

New Blood

Hey there!  Hoping to get this out before the oxy takes over.  Wed went to clinic for a blood transfusion to boost my energy - so far no luck but might be stronger tomorrow. Jennifer came by so that Geoff could take a bike ride.  He was very happy. So if anyone wants to come Tues at around 10:30 let me know. Lisa I think you mentioned you'd like to come by is this time good for you?

There really is not much else. Thank you for all the cards.  Keep that juju coming. Bilirubin test on Tues.

Here come the oxy here come the oxy -- fading fast,

Love to you all.  Take care of each other -s

We Go Up, We Go Down

 Had a bad coupe of days there after.  Thouht things were on the turn around but I'm still STUCK and it is painful. And making me very weak. It's all this medication - it call contridictts each other.  Outside of that, I'm am going to ty to take a shower and not pass out. I have no body attachments for a while.

Nothing else is going on so you probably won't here from me for a whle.  Next clinic is Tues for fluids and labs.  Let's hope the BR is still coming down.

Love you all.   Take care of eac other, -s

Best Morning in a Long Time

 I woke up feeling that I am on the way to being me and I just had to share.  I slept through the night - getting up only like a normal person to pee. Things are still not right in the gut but the heavy pressure is gone it feels  like it might be gettin around.  Not sure if taking the pain pills help but I am notchanging anything now seems it to be getting better.  And now or a full drumroll....I finished breakfast- small bowl of Cheerios and juice Most I've eaten in a while.  

I did forget to say yesterday, we go to the clinic at 11am to unplug baby a get fluids.Maybe I'll get the suite? Hope to be home by 2 but who knows, Not sure if they are taking blood today or not.  I'll try to write later and update you,

I got through some email stuff yesterday as well.  My good friend in Switzerland - another old buddy who started out in Public School in Flushing, NY -- reminded me how good music can be at a time like this and has sent a few small lists.  Very appreciated.  And then there is my "joke a day or every other day" friend.  They're mostly videos and I can get most of them.  It's great because I can watch them at will.  So when I feel like a laugh hit, I have my own channel. Again very appreciated.  A while back a friend gave some handcrafted paper flowers - which she made- in a vase. Since I can't have flowers, she hit the nail on the head and I enjoy them everyday.  

Looks like another cloudy, raw and rainy day.  It would be nice to see the sun one of these days  

Keep the juju coming,  Love you all.  Take care of each other -s

3.1 !!!

Yesterday was another long one.   Got to clinic at 10 and didn't get home until 3:30,  First stop vampire shop.  Then to see the nurse, Siri. - Perfect. Told her still not eating and doing my best to drink.  For someone not eating I'm not sure how I managed to gain 2 pounds.  More drugs were introduced to stimulate my appetite. We'll see, I need to eat.  I have no energy whatsoever. The lab test came down and although I should have been happy, I was numb because I still do not feel right.  But this is really great news,  If this continues to go down, I don't want to jinx it by saying the good stuff out loud. 

After the exam, it was on to the infusion room  Got a chair in the back.  Thank god for the Price is Right.  My nurse came in and asked what was wrong.  The guy next door must be deaf, The only between our chairs was the privacy curtain.  The TV volume was blasting me away.  Morgan said she would look for another room.  Would I mind a bed? No.  It did take a while but eventually, we were able to move. Well, it was like moving into the Ritz - adjustable bed, large room,  and a door that closes.  Which was great since we were in that room for almost 4 hours.  Morgan signed me up for a bed, if available, for future treatments. We brought the Sunday Crossword which killed a lot ot time  Got through all my IVs and a pump.  "Baby is coming home,"

Got home and the genetic testing girl wanted to discuss the results.  I do not have the gene for this cancer but I do have a mutant gene unrelated to any of this.  It is called BLM gene.  It all gets very techy and stuff to share with my family,  So that concludes the technical portion of this post.

Since the onset of this whole mishigas started - which I think is just about 2 weeks ago, I have been feeling numb.  Which is to say not feeling anything.  No smiling, no laughter, no tears - that was the biggy!  I'm sure a lot it is due to the meds.  Have no energy.  So a lot of emails didn't get read.  Well I have been trying to keep up,  First was talking to my brother,  It lifted my heart hearing his voice.  Honestly I will always talk to him except if I'm sleeping,  It has always been just the two of us.  And now we need each other now more than ever.  Then it was on to the cards and notes and packages.  My half sister and husband sent a great bag "Random Crap" funny stuff. Susan N sent a bag of headwraps and caps. Each and everything I read came straight through the heart.  But for whatever reason, Amy, my sister-in-law's card broke the dam. Not sure why, but I cried the big tears and that was best gift of all - although her package was pretty cool too! So am I on my way to being "human" again?  I sure hope so.  I'm dying - literally to get back on the dance floor.......

Thank you all again keep sending all that good juju!

Love you all. Take care of each other -s

OMG What day is it?

 I've been slipping in and out of this fugue state for a couple of weeks now.  Got up this morning and fouht like hell to stay up and write.  

Well that didn't work because I notice it is now 2 days later.  So for any and all that still with me, I try to update you.  Apparently my gut has lost it's marbles.  This morning it was so painful, the dr orderded a xray to see if we could see anytthing..  We scurried down, took, the test was back by 11ish.  

Resuts:  "Nothing to see here boys"  WT????!!!!

Dr's office called and we went through the pill regimen again.  What do you mean you're not taking your oxy?  But I don't like pain meds.  But they are here to help.  I'm beginning to believe that I migth've been a bit stubborn,  Because when I do take it everything calms down.  Hopefully this will help. It has to be oxy because nothing plays with the liver as well.

Tomorrow morning we go in chemo and baby comes home for a few days.  Please no company just yet. 

Ok fingers crossed we turn some sort of corner soon.

Love you all. Take careof each other -s