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.

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

Good News - Not So Good News

(Geoff writes) Well there's good news and there's not so good news today. The good news is that the bilirubin count is still going down. Over a point since last we checked. Which means that the ducts in Susan's liver are dilating, which could mean the tumor is shrinking, and if this keeps up there will be no need for a bag. BTW, I don't know who Billy Rubin is, but I'm very tired of him. He needs to get lost.

Along with today's blood test Susan had a saline IV drip this morning. Gotta get those fluids elevated since it's been hard for her to drink liquids, let alone eat solid foods. Because of the congestion in her gut nothing is moving too well and piling more on top leaves her feeling bloated and very uncomfortable. So we're working on that, gently at first, then they'll call in the big stuff if that fails.

Because of all that she really doesn't want any company. I'm about all she can deal with right now and I'm the bad guy when dealing with protein and liquid intake. Besides it's a really crummy day out there, wet and raw, even though it's supposed to hit the 50s. I'll believe that when I feel it. At least the Celtics kept up their winning streak last night.

When Susan is ready to accept visitors there are a few rules:

Visitors to her at the Oncology Center in Fairhaven are limited to one healthy person at a time and masks are recommended. Please, no flowers.

Visitors at our house are asked not to bring flowers. Something about bacteria. Susan will let folks know when she's ready for visitors. For now just keep sending the good juju to help get those numbers down. 

Ouch!!

 (Geoff writes) This past week we got Sued, as you may have read in the last post. Sue Sullivan made soup and Saturday Suzie made us a soup for lunch. Now we have soup for days! I'm going to get very lazy in the kitchen if this keeps up.

Saturday the pain started. Susan thought it was gas and I was hoping that was all it was, but it persisted through Sunday, and now Monday morning. It kept her from eating much, or enjoying anything. When there's pain in your gut it takes away your concentration on anything else. I read about all the side effects of the medications and tests Susan has been exposed to lately and there were some very scary scenarios. Thankfully her team thinks it IS gas and blockage. So she needs something to ease the pain and lubricate her insides, if you know what I mean. Another trip to the pharmacy. They know me by name now.

Hopefully all these meds will play nice together and make her feel better, which is why Susan has been in bed and hasn't posted for a couple days.

Love you all.  Take care of each other -s

Some Good News

 I'll cut right to the chase and give you the latest test results:

Prior to chemo- 8.8  After 2 days with chemo - 5.5!!  The ward went bananas.

 After chemo, we schlepped down to St. Luke's for another CT Scan.  Didn't get out of there until 5:00. Another very long day.

I still haven't talked with anyone about the scan.  I wasn't dazzled with what I read but what do I know. There was talk on Thursday that the bag may go back.  So that's the not so good news.  We'll see what happens today.  Everyday is like an entire chapter of life.

Pete & Sue came on Thursday and hungout until Friday morning.  We had a wonderful time with them.  Sue made some delicious vegan pad thai for dinner.  I think they might be back in March.  

My friend Suzie K and her daugher are bringing lunch today.  They recently were in Aftrica so there will be pictures and stories.

Next week is still very fluid depending on this bag thing.  But I am proceeding as planned.  Wednesday I'm going into clinic for blood work, doc consult, and IV fluids.  Paula said she'll sit with me during the IV which takes about and hour and a half and give Geoff a break.

That's all I've got for right now.  I'll keep you posted as soon as I know more.  I've really got my fingers crossed that since the number went down so much, he may wait and see what happens before reinstalling the bag. 🤞🤞

Love you all.  Talk caer of each other -s

Finally, This is IT!!

 First, I have to tell you that I am watching  a gorgeous orange moon set over the bay.  Life ain't all bad.

I was really looking forward to day one of chemo.  But, could I sleep the night before, of course not. I  had servere stomach cramping with fever.  I wasn't a happy camper.  I was up all night in pain.  And if the fever didn't go down, they wouldn't start treatment.  Geoff suggested taking Tylenol and eventually the fever came down but I still felt like crap.

Got myself together and made it to the clinic on time.  First to the vampire room, where they do an excellent job. It's always good to have someone who knows what they are doing approach you with a needle.  Then on to conference with the oncologist.  There was more talk about the drain and the new approach.  Since the bilirubin number is now way too high for the super chemo that will wait till later.  When is later? I must admit, I'm a bit worried and somewhat scared.  If the drain was still in, I'd get the super cocktail and maybe the whole thing would work quicker.  Now I have no idea.  The doc is big on quality of life - which, for me, is so much better without the bag, and the chemo isn't as harsh.  Not that it stopped him from the litany of things that may or may not happen and what you do to prevent some of them.  For example, Nothing COLD - don't touch anything in the fridge, don't eat anything cold, don't drink anything cold and whatever you do don't go out unless you are bundled like an eskimo.  That Antarctica jacket just might come in handy.  Apparently, this chemo can lead to neuropathy of the extremities and can get pretty servere.  Then, there is the Magic Mouthwash - really just baking soda and water.  Rinse as many times as you can a day to keep the mouth sores away.  It goes on from there but only gets worse.

I did tell the doc about my tummy.  No more tylenol.  It doesn't play well with the liver.  He prescribed pain killers - originally wanted to give me oxy which I really don't like so we settiled on tramadol and prescribed pancreatic enzymes to help with digestion since my pancreas isn't doing it's job.  Hopefully, this will help with the gut.

From there it was off to the "Infusion Room".  Certainly not your TV's chemo group where they sit around in a circle play cards and tell jokes.  Nope.  This huge room is lined with individual cubicles each having a window, lounge chair, guest chairs and a tv.  The nurse was extremely nice and there were more instructions.  As with every new hurdle I have encountered since this journey began, the tears starting coming.  It's like my brain is screaming saying "What are you doing here?  You don't belong here - RUN."  Eventually, I calm down when all the tubes are in and the drips are dripping.  Yes, this is my life now.

 I was also shocked to find out that this is going to take around 2 hours give or take.  What?? I thought I was getting my pump and was out of there.  Not so fast.  First is a 15-20 minute drip of supercharged antibiotics. Next, is the first chemo drug given with the supercharged vitamin drip.  That one takes about an hour and a half.  Then you finally get the pump filled with the 2nd chemo drug.  Which, by the way, is not a bottle but a box mechanism that weighs a little over a pound. You get a lovely fitted bag to carry it in or even where around you waste.  Much easier to deal with than the bag.  And since it is solid, I can put it in between us in bed so it doesn't fall off - don't want to lose another tube.  We have named it "Baby"-  gender fluid, of course.

You are allowed to get up and go visiting.  In fact, the guy next to me, who arrived dressed in a full bike kit from head down to his biking shoes, spent most of his time with his chemo buddy at the end of the line.  Geoff was chomping at the bit to talk to him but he wouldn't leave his girl.  We should see him again on Friday for the pump removal. This guy is in his 60's and rides his bike from Lakeville (approx 17 miles) to and from chemo!  How do you do that?  I could barely get out of the chair.

After 4 hours, we made it out of the there.  Got into bed and didn't wake up until 6pm - when Geoff got me to come down for dinner.  "you have to eat".  Light dinner of tofu an rice.  Not taking any chances. Watched some tv and then went into the bedroom.  Tummy still sore but I wasn't doubled over.  I took the Tramadol.  It really didn't do much and I never fell asleep. Looks like I might have to go with the oxy if I still have pain.  At least I was able to lay there quietly, which was more restful than the night before. And I had just slept the whole day away.

So far this morning, I'm doing ok.  Geoff's brother Pete and the other Sue Sullivan came down from Vermont to visit their son in Worcestor.  They are driving down here this morning, staying the night and leaving on Friday.  We don't see them too often so it should be a good visit.  Even if I have to go up and rest, Geoff can get in some quality sibling bonding time.  Like they can fix stuff together!  They are also crazy Celtic fans like we are and there's a game on tonight.  Should be fun.  Since I can't shower until the port bandage comes off on the 27th, it's wash hair in the sink again.  Most look somewhat presentable.

I will be doing the pump thing every other week on Tuesday starting March 5.  If anyone is interested in visiting me there on any given Tues, I think I can have one or two at a time, I'd welcome the company. Geoff will drive me in for the dr's consult but I'm sure he doesn't want to stick around for 2 more hours. Just let me know and I'll check my social calendar - also the time is never the same.  It isn't too bad.  You get free snacks, the volunteers come around with sandwiches at lunch time - everyone is very nice. Of course, feel free to bring your own goodies if you want.

Love you all.  Take care of each other -s

The New Plan

 Before I begin, I would love for everyone to read this article that my  friend sent me.  It changed my perspectiive on a lot of things:

https://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle

It was a very busy last four days.  A stream of people, food, and most lovingly, dogs. Karrie washed my hair and Maureen gave me a fabulous haircut.  By the end of Monday, I just conked right out at 7:30 but then was up every hour after midnight in anticipation of having to get at 5am to go get the port installed.

No problem getting to Charlton. And fortunately, the procedure went as planned - for a chanage.  They did do a blood test, and my bilirubin is back up again - 6.8. But I'm still not sick. Now the question is can I get chemo?  We were out of the hospital by 11am.  I didn't get general anesthia but I did get pretty heavy sedation.  So I am still a bit wacky.

Got home, slipped into bed and I was out.  My oncologist called around 3:30 with the new plan and as wacky as I am I wanted to share.  After confering with Dana Farber, the decision is the cut the cocktail down from 3 medicines to 2.  The third one is the one that doesn't like the high bilirubin #.  It is also the harshest.  The doctors are hopeful that the chemo can shrink the tumor enough that the bile ducts can drain on their own -- no more bag!!!  When the numbers go down, they wil add the third chemo to the mix.  Let's hope they are right and something will finally go my way.  

Start sending all that good juju to shrinking the tumor.

Thank you everyone who came by this weekend.  It really helped get my mind off of all this and feel normal - whatever that is these days.  I am definitely not the same person I was a month or so ago.

Love you all.  Take care of each -s

Now What?

 Well you didn't think it was going to be easy? You didn't think for a minute that I could get through a weekend without some drama, now did you?  Absolutely not!

About 4 or 5 days ago, Geoff and I noticed that "baggie" wassn't filling up as much as previously. We told drs, we told nurses, no one seemed to take notice.  On Thursday afternoon, we realized nothing was flowing from the tube except maybe some air -- not good.  Friday morning, same thing.  Decided to flush it and see if it was blocked.  When G plunged the tube, I felt the liquid on my chest -- really, really not good.  The phone calls started.

The visiting nurse wasn't due until 11:30 and the Cape Cod Crowd was coming for lunch at around 12:30.  I decided to take a shower and try to look presentable.  In all the moving about, I noticed that the tube was now flowing again.  Oh good, maybe we dodged a bullet - ha!  Nicole showed up and we updated her on the situation.  She removed the bandage covering the tube enterance into the chest and flushed again.  Yup, I had sprung a leak!  But since we all saw that the drainage was still going, perhaps it just needed to be put back up a bit farther in the duct.  It was obvious that the tube had migrated south.  Thank goodness Nicole was there - she talked to the dr's office, then the hospital, and eventually to IR directly (Interventioinal Radiology - the folks who put the tube in).  Ok sounds like it's about a 10 minute procedure.  We can squeeze you in this afternoon - unless you think you want sedation - then we may not be able to gather a whole crew.  "No sedation.  Just put a stick in my mouth!"  Ha, ha, fine. The scheduler will call you in a while with  a time.  Phew! 

Nicole left and Mary, JohnDavid and Sadie showed up.  It was good to see the humans, but I did miss me some puppy love.  Sadie is always happy to be here and she lets you know.  We were sitting around chatting waiting for Steve and Sam -they had the food, when the scheduler called.  "Can you get here at 2? You will probably have to wait, but at least you'll be here."  Fine.  Steve showed up a bit after 1 and it was a race to get the latkes reheated and the soup warmed.  Sat around the dining table, had a few latkes, and we were off - leaving our company with the clean-up.  They said they would hang around since the procedure wasn't going to take too long.

Arrived at IR at exactly 2pm.  I was called in at 2:45.  Saw my buddy in CT - he almost didn't recognize me withour my johnny.  I get wheeled into IR and I am very nervous on all kinds of levels. I tend to talk a lot when I'm nervous --- or let's just say talk more. "Please put your arm above your head and don't move" The nurse was putting this very fancy drape over me with a big plastic window, when I was trying to explain to her that I was getting pressure from right there - tapping on the plastic window. Well, if looks could kill.  "We're goig to need another DRAPE and new gloves"  Ooops. She was not happy.  "Ma'am please stay still".  "Well that's what happens when you don't sedate people, especailly Jewish people - sorry"  Now, I'm a statue but my mouth keeps going.  The doctor comes in and sits down to do this 10 minute procedure and all I hear are moans and groans.  "It's totally disconnected - completely out".  "What does that mean?  Can you get it back in?  Whap happens now?"  The doc pulls the drape down from my face " I NEED to think!"  Ok, I can take a hint. I immediately shutup.  Which is not one of my biggest assests.  There are more images taken, more phone calls.  

Finally, he tells me that if the tube actually does need to be reinserted then it is a bigger procedure with sedation.  Maybe they can schedule something on Monday.  But the port is going in on Tues, chemo on Weds.  Well it all may have to be shuffled around - AGAIN!!  That's when I started to cry.  I never envisioned mysself begging for chemo - but if I don't get treatment soon, these tumors are only going to get bigger and that just scares the crap out of me. He pulls out the useless tube. Bye, Bye, Baggie. But wait, if the tube was out, what was draining into the bag?  Not sure, but it wasn't bile. ???? I'm wheeled back out into the hall.  I change and they bring Geoff in to get him up to date.  Doc comes out and explains that the bile ducts have practically closed up and there is no way they can get a tube back in there until they are dialated again. He doubts that will even be by Monday.  The last bilirubin test was 3.1.  Can they start chemo with that number? He consulted the oncologist, and as of now, I am on tract to still have the port installed on Tues and treatment start on Wed.  Of course, if between then and now I start having fevers and/ore pain call the oncologist and it'll probably be back to the ER. You have no idea how many scenarios have built up in my head.  There are so many variables and so many unknowns. It is all so confusing.  Please, no questions about all this because I don't have any answers. So I have resigned myself to try as hard as I can to the "one day at a time" rule.  There is one really bright side - for now, I'm bagless and fancy free!  Tube holiday they call it.

We finally got home at around 4:30.  The gang was still there but looked like they were headed out.  As soon as we pulled up everyone turned around and got comfortable to hear the latest news. I was so glad they stayed.  Plus they did a great job cleaning up.   I finally kicked everyone out at around 6.  It had been a long day.  We had a small dinner of black beans and rice. I went upstairs to sit on the couch and watch some tv and immediately fell asleep.

It's another afternoon of company, which I am looking forward to.  It's snowing again.  It always looks so pretty over the bay.  

Love you all.  Take care of each other -s

Chemo Training????!!!!!

First I want to say that I am still pissed that we are not in LA playing with our grandchildren right now.  This was not what we were supposed to be doing!  However, on the good side -- I took good old fashioned American drugs and slept almost through the night.  Should feel much better today.

As for chemo training..... NOPE, absolutely not. I will not speak of it.  We sat there for almost an hour getting bombarded with: Well, if this happens do this...  if that happens do that...  I was in so much shock when we left, I could barely walk.  Don't get me wrong. Our nurse, Jen, is great and I love her but her job is to impart all this stuff - not a fun job.  So, I've decided that if and when any of those things happen, I will share.  Until then, consider yourselves on a need to know basis.

What we did find out is that I will get scanned every 4 weeks or so - that is earlier than what we were originally told.  This is to see if the chemo is working.  So I don't have to wait a whole 8 weeks before knowing something.  That was the most positive thing I took away from the meeting.

Went straight home from the clinic. Had a bite to eat and then I slipped into bed, put on a movie, and fell asleep for about an hour or so.  While Geoff, the energizer bunny, did errands.  Got the tax lady all squared away, got a haircut, finished shoveling the driveway, and who knows what else.  The man never stops.  I was watching him in the kitchen the other night.  If you've seen our kitchen you know  you can pretty much stand in the middle and pivot and reach anything you want.  Not my guy -- back and forth and back and forth -- "It's a good thing we don't have a big kitchen, there would be nothing left of you"

The saga of the elusive prefilled saline flushes continues.  Geoff found out that during the pandemic, the saline got tainted, both prefilled and bottled saline.  All the shelves were stripped, the product went into hold and never quite recovered.  Hence the high price for a plastic tube with salt water.  Sooner or later everything leads back to the pandemic.  However, we now have Vee from Blue Cross and Laura from the Visitinig Nurse Assoc who are both working overtime trying to get us what we need.  I have faith they will prevail.

Very busy weekend ahead. Visiting nurse comes this morning and then our Cape Cod friends will be down for lunch.  Steve made latkes!!! YAY!!!  Saturday our friends Maureen & Bob are visiting. Our friend and neighbor Karrie will come by as well.  Maureen, who is a hair stylist as well as a fellow thespian, has offered to cut my hair.  More YAYs.  Just what I need. Although, not sure how long I'll get to hold on to it.  We were told, some people lose their hair and others don't.  We'll see.  Some good biking buddies are coming in the later afternoon on Sat.  And on Sunday, I am finally going to see my brother and family.  Haven't seen them since this all started.  Hope I'm in good condition next weekend to see some more people. Right now, playing that day by day.

We have gathered a good list for our painting crew.  Hope some of you know how to spackle as well. If not, Geoff can do the wall prep prior to priming and painting.  Figuring this will take place around the middle of next month.  Hopefully the weather will be a little warmer. 

If I do lose my hair, anyone interested in joining a wig posse?  The only wigs I am familiar with are theater and for the most part, they are cheap and uncomfortable.  Turns out I can get a prescription for a wig - which discounts the price significantly. The perks of cancer.  Blond, redhead, blue, purple, long, short -- someone suggested Rasta - let's mix it up a little.  This could be more fun than I thought.  Also looking for folks who know how to headwrap a scarf.

Again, thank you all for wanting to help and being there when we need you.  The cards and well wishes keep pouring in.  I could wallpaper a room.  I am looking forward to having a busy weekend with lots of laughter, hugs, and love.  You may not hear from me again until Monday.  Have a fun weekend yourselves.

Love you all.  Take care of each other -s

Oh What a Day!

 I've been up since midnight. I've warmed up some almond milk and honey and turned on the fireplace. It is now close to 4am still no sleep so I thought I would write.  So much for gummies - but more on that later.  This is going to be a long one, so settle in.

Yesterday was quite the day.  I'll start with the numbers - not bad but not great.  The bilirubin is going down but taking it's sweet time about it.  I've done a lot of thinking on this pump - formerly known as the "bottle".  Here's my theory and I think it's a good one.  If the # was <1, then the liver would be healthy enough to take a direct infusion of chemo from the IV going into the port at one sitting.  Since my # is 3.1 - which is better but nowhere close, they attach a pump to slowly release the chemo over a 48 hr period. Thus a bit less severe than the one sitting.  Anyway, that's what I came up with sometime after 1am.

Moving on.... Geoff cleared the driveway, came into to thaw for a while and we took off for the clinic.  First up was the blood test. Then our nurse came in to show us what the port looks like and how it will look on my body.  Nothing about the care and feeding of the device.  There was a lot of discussion as to when and where this procedure was going to happen.  We were told to arrive at 6:30am for an 8am procedure at St. Luke's in New Bedford on Monday.  YAY!! Close and early. I will start treatment on Tuesday. Before we left Jen, the nurse, asked us to come back tomorrow (today) at 11 for chemo training.  Chemo training?  Really?

Left there and headed down the street to the pot shop.  Turns out you can't get straight CBN and everything in the shop has some level of THC.  I really did not want any THC - I just wanted to sleep.  The guy suggested we try a smoke shop or even a gas station or liquor store.  My, how times have changed.  "Do you know of a smoke shop"  "Uh maybe in Dartmouth?"  Before we went out on a wild goose chase, we decided to go home.  I'll do research on the matter and Geoff went to the grocery store -- with the car!  Turns out there is a smoke  shop right down the street from where the pot shop is -Duh! Called Geoff - he popped in and came home with some CBN/CBD gummies.  Guaranteed to put me to sleep.

And then the phone started ringing.  First call was the hospital scheduler telling me my app't is on Tues at 8am at Charlton Hospital in Fall River.  Not that far but certainly not as convenient as New Bedford. "Nope I was told 8am at Stl Luke's"  This went round and round for a bit before we both decided to hang up and she will get back to me when it all got sorted out.  Fine.  In the interim, I got a call from the nurse saying Oops our bad.  The scheduler called back and we confirmed everything for Tuesday and treatment will start on Wed. Just when I thought the call was through, she starts telling me about the care and feeding of the port.  They will put a very, very tight bandage on it -- that she understands to be very uncomfortable around the neck area.  Of course it's uncomfortable.  Who would've thought any different - why should they make anything comfortable for the poor patient.  But there was this issue with the bandage being on for 7 days - what about the pump?  Showering?   "Oh you'll have to cover it with plastic".  I'm already covering the tube entrance into my chest with plastic.  Might as well bubble wrap me or just do the armpit swipe.  Ah, but I still have hair!! So bubble wrap it is. I still wasn't getting the 7 day thing - is that with or without the pump days. Then, in her sternest voice "the bandage comes off Feb 27 at which time feel free to shower without cover"  She couldn't just lead with that?

Next up, my good friend Suzie called.  She had recently returned from Tanzania and wanted to share her experience.  It was great talking to her until call waiting chimed in and I said gotta go it's the dr's office or hospital again.  "We need you to come in and sign some papers and a copy of your ID.  HUH?  Can't I sign them when I get there on Tuesday.  "Well I can send them via email or the portal"  "But you have my insurance card on file"  "We need your photo ID this year"  This year?  "What are the forms?" "New stuff about Cybercurrency"  Cybercurrency???  Then it dawned on me.  This wasn't the hospital at all.  It was our tax accountant!!  "Geoff will be there tomorrow with everything you need."  Jeez, anothere 50 minutes out of my life.  Does everyone have a portal these days?

Ah, but the fun didn't stop there. This tube that is in my chest has to be flushed 1x day.  The hospital gave us some prefilled saline flush syringes when we left but we need more.  The visiting nurse said he put in an order for a box. Great!  It's been over a week or so and still no box.  Geoff called the case manager at the VNA and was told BCBS doesn't cover it.  Try just refilling the syringes with saline water. If I hadn't just been through a series of infections and dealing with bacteria, I may be more open to the suggestion.  As it is, NO WAY in HELL I'm reusing anything going into my body.  We went online to see what was available.  If you weren't a doctor, these things run into the hundreds of dollars a box.  Not that we can't afford it or that I am not worth it, but the principle of the thing. This is an intregal part of my care and maybe for a very long time.  Someone has to call Blue Cross.  I made the call and fortunately got a very patient understanding woman who was going to get to the bottom of this.  She tried to contact the case manager at VNA with no luck.  BCBS is all about the "code".  "Do you know the code, did you get the code, did you see a code, etc, etc"  No, no, no, etc, etc.  Well, this gal was like a dog with a bone.  She was determined to come up with a code -- and she did!  Now for the tricky part. It needs authorization - do you want it to go to the VNA or your PCP?  HUH? Round and round that conversation went until we chose PCP figuring in the long run it might be better.  If there is a fee it will only be 20% of the cost -- much more better.  Of course, this will take at least 2 weeks to get approved. And, I still have to find out what code the VNA used - I may still be able to get it through them as well.  I think, I'm not sure.  At this point, I was ready to blow my brains out!! The nice woman from Blue Cross will call back on Monday with updates.  Finally hung  up the phone and it mercifully stopped ringing.  

We got home from the clinic at around 11am it was now 5:30pm. I was physically and emotionally drained.  However, the best was yet to come.  It was still Valentine's Day.

Exercise and good eating - ha!  A lot of good that did me.  We haven't eaten red meat in a long time. Might've cheated here and there on vacation but certainly NEVER cooked a slab of beef in years.  Last week I started hinting about tasting a steak before I lose my apetite altogether.  So before you could say filet mignon, the broiler was aflame and I thought it was curtains for the kitchen.  Geoff cooked a very small, lean, tender filet which we split with baked potato and broccolini.  Sat down to a candlit dinner, listening to music, looking at the bay. Even got the ok from the doc to have a small glass of red wine. Not a finer restaurant in town.  The dinner was perfection!  Which he topped off with a card and a small box of chocolates. I'm not supposed to have sweets but I did have one delicious hazelnut choclate, one of my favorites. It was wonderful - we talked, we laughed, I cried.  A month or so ago, we would've gone upstairs to end the evening properly -- instead we watched the Celtics smash the Nets beating them by 50 points!

I do think I'm back to no meat.  It was very good but a little goes a long way.  I am so very grateful to the chef because I know he did it for me.

Back to where we started, the gummies.  I took the gummy at around 9:30.  Fell asleep and was wide awake at midnight.  Not only could I not get back to sleep but I was having slight palputations.  I guess it's back to the anti-anxiety pills.

Today, we should be on our way to LA for a stopover before heading to OZ.  Instead, we're off to chemo training at 11 - then I figure I'll come home and sleep the rest of the day.  Still can't wrap my head around it all.  

Today also marks 19 years we have been in this house.  Just two small rooms left to paint and then I declare it done!  I told G I would help but now I'm not so sure.  So anyone who might be interested in helping don't hesitate to write. 

The milk is finished and so is this tome.

Love you all.  Take care of each other -s

Winter Wonderland

It's 6am and I am up and downstairs overlooking the tundra, listening to the wind. The winter wonderland is gone and we are now left with howling winds and piles of frozen snow at the front of the driveway.  Poor Geoff is going to have to dig us out in order to get to the blood lab this morning.  UGH! more guilt!  

Aside from that, I had the best day I've had so far since I've been out of captivity.  Up and out of bed early, breakfast at the table -- all normal stuff.  Had a visit from a wonderful woman from palliative care.  I did get goose bumps when I heard that expression.  I always thought that was for end of days.  No so anymore.  They apparently oversee the whole operation, so to speak.  She was terrific to talk to - honest, reassuring, and very knowledgeable.  

After she left, I had a televisit with the Fairhaven oncologist since everthing was closed due to the storm. So it looks like as soon as they can get a port into me, I can start treatment.  YAY!!  The thought of this thing continuing to grow inside of me gives me the freakin' creeps.   However, there is one little caveat that no one seemed to mention.  If my bilirubin # is not below 1, wait for it...... I will have to have a BOTTLE attached to my port for 48 hours every 2 weeks.  The bag just wasn't enough.  Now it'll have company on weekends!!  I was gobsmacked when I heard this. I'm going to look like a medical xmas tree. I was looking forward to going in for treatment and bonding with my fellow fighters. Telling jokes and travel stories - but no - in goes the baby bottle (really a pump) and I go back home.  This morning I'll get the blood work done, but I doubt it is going to below 1.  We'll see.  I should have the results this afternoon.  I will be sure to let you all know.  Hoping to get the port put in early next week and I can start treatment the same day.  They say you don't get too sick, if at all, anymore - everyone's different.  Going to need some lessons in scarf tieing though.  Not sure how long the hair will last. Bummer - I love my hair.

After the lab, we go visit our local pot shop.  One thing Kim from palliative care suggested was to get some CBN for sleeping.  That's one of  the hardest parts for me - when the lights go out.  I keep meaning to find a pod cast to help me fall asleep -- welcoming any suggestions.  Nothing political - my blood pressure seems to be quite normal now and I'd like to keep it that way.  I tried some CBD I had left over from my knee surgeries last night.  I was calmer but couldn't stay asleep through the night - up every two hours.  Hopefully the CBN will be better.  If anyone has any experience with this, please share.

In the meantime, I continue to get cards and messages that bring lots of happy tears. My grandkids started writing and I get all verklempt (one of the best feelings in the world).  I also know I can pick up the phone anytime and cry my heart out if I need to.  I can't say enough what a comfort it is to know you are all out there.  

Time to get moving.  I'll let you know what the numbers say.

Love you all.  Take care of each other -s

Good Days, Bad Days

Yesterday was a bad day, unfortunately.  I think a lot has to do with the antibiotics making me sick both coming and going -- if you know what I mean.

Paula and J dropped by to drop off some of Paula's Italian penicillin soup for me and hot and sour for Geoff.  The visit had to be upstairs since I was too exhausted to come down.  So as much as I would love to  see all who want to come, please write or call first to check on what condition my condition is in.  I don't mind entertaining in my boudoir, but I'm sure some find the spiral staircase a challenge.

One other thing I left out last time that has been on my mind.  When I went into St. Luke's for that first one day procedure and came out 2 weeks later, I started wondering if I should have gone to Boston. I mean what did these people do to me that I come out with an attachment.  However, without being asked,  the doc at DF brought up the fact that whoever took care of me did an excellent job.  My body was in a very serious condition and they did all the right stuff. Doesn't make me like the bag any better but at least I'm still here.

I have just taken my last does of the bloody antibiotics.  Here's to better days and hoping this will be one of them.

Love you all.  Take care of each other -s

The Plan

Good morning all.  I'm back among the quasi-living.  Thought I would get this out while I have the strength.

We finally made it to Dana Farber yesterday.  Traffic was horrific and I was terribly nauseous from these lovely antibiotics.  But we got there.  Met with Dr. Wolpin and his associates.  So here is the plan moving forward.

I cannot start treatment until my liver numbers come down and my body gets a bit stronger.  Hoping two weeks.  Since the first round of chemo is pretty generic, I will be able to go to the Southcoast Cancer Clinic in Fairhaven once every two weeks.  It takes about 8 weeks to see if the chemo is actually working.  If not, back to the beginning for another 8 weeks.  If it is working and the tumors are shrinking, there is a chance of removing my sidekick.  Clinical trials don't come into play until nothing works.

While we were there, I also got genetically tested.  There is a 1% chance that if you do have a mutant gene they may be able to match it with the exact treatment and blow the mother away -- then you've caught the brass ring!!  Small little miracle there - but what the hell.

We got home with no traffic and I immediately proceeded to sleep for the rest of the day.  I have to say that if I have to be stuck somewhere at least I have a great view.  Very appreciative of that.

Again, thank you everyone for all the love pouring in -- it reminds me that I am still here.

Next appointment is with the Fairhaven oncologist Feb 13.

Love you all.  Take care of each other -s

We're Going Home...

 The "team" got together last night and decided since all the nunbers are coming down and my vitals look good, I can go home today and take the antibiotics at home.  Of course, nothing is certain until I smell the fresh air.  Now all I have to do is learn how to cope with my new appendage.  Should really give it a name - accepting all suggestions. The only way this comes out of my side is if they are able to shrink the tumor and go back in and and try to clear  the whole duct so it can go back to draining in the body. Something tells me that could be a long way off.

Had a very good day yesterday.  Geoff came over with the Sunday NY Times, helped me wash my hair with real shampoo - still looks like crap- and then I gathered my bag and we took a awalk around the perimeter.  My legs felt stronger which I was really pleased about.  A short while after we got back my good buddy Robin showed up. It was so so so good to see her.  We all chatted for a bit and then Geoff got on his bike and pedalled home in 24 degree temp.  Nuts!  

Robin and I talked, laughed, cried and even managed to get to some ot the Sundy Crossword.  We have known each other since we were about 11 growing up in Flushing, NY.  We are definitely family,  Just as she was packing up to go Geoff returned. Good timing.  

Drs. came in and out while we sat here trying to take it all in.  Dinner came and the lovely gal  from the cafeteria gave Geoff a meal.  So he had most of mine plus his own.  Noboday has to worry about Geoff not eating.  He stayed until the Celtics whipped the Grisslies.  Bit tribute night to Marcus Smart..

So as for next week, if in fact I do break out of here, I know a lot of people want to come visit.  There is nothing I would like more, but for the next two days, I really have to get reacclimated to home and build up some strength to go to Dana Fabert on Wednesday.  So let's see how it goes after that.  As someone has been trying to teach me "one day at a time".  Not really my style -- I'm so far ahead I'm arguing with my mother and petting the dog!  But I am going to do my best.

So please send all that goood juju down to Dana Farber at 8am. After that we go for genetic testing.  Whoopie!!

Another sunny day - things are looking up.

Love you all.  Take care of each other -s

Let the Sun Shine!!

 Woke up to a beautiful sunrise this morming.  Is this my good omen?  First, I'd like to say many thanks to Geoff to help keeping you all up to date.  I think I feel a bit better this morning.  It'll all come down to what the numbers have to say.

As Geoff said, Deidre and Danny and the kids come down in the afternoon.  Quite honesly, I did not think I had the strength or was up all those people.   But I was so happy they came.  Just like whenever anyone else shows up - partially because of this blog,we get to move past the the gloom and doom and talk about life And that is what I am trying to figure out now. As for getting the othe other side, I've talk to a great deal of our Christian family and friends and I just can't get that all. Not me.  I spoke to the Rabbi here, lovely guy that has biked with Geoff-- what are the odds?  Anyway with the Rabbi, I know I'll got out laughing.  But it is the living in between.  How do you do that?  How do you handle coming in for a day surgery and wind up being here for 2 weeks. Finding infections and deseases I never even heard of.  I am trying hard to pull a ray of hope to hole on to but I must say it is getting tougher.  So please send me what you got to push through this sludge.

I can't say enough how gratful I am to you all.  I may not call or write sometimes but please know I just feel you embraces and love.  And no way in hell, could I get through this without Geoff. I know this isn't easy for him.  But he comes and sits here every day, reading, doing crosswords with me, or just watching me sleep.   So grateful.

So today's mission is to see those bilirubin numbers go down so that I may be accepted for treatment,

I think that is all for today.  Go and enjoy the sun.

Love you all.  Take care of each other

s

Drip Drip Drip

 (Geoff writes) Well, the dirty deed was done and nobody is thrilled. Nobody would be excited about a tube stuck in their belly dripping into a bag strapped to their thigh. Though if nothing was done treatment options would be very limited. This bile has to go somewhere. 

We are learning more about the digestive system than we ever wanted and, unfortunately, what can go wrong with it. We humans are not as resilient as we'd like to think. Makes me wonder what all that processed food can do to your system. Nothing good I suppose. At the same time eating well and being active is no guarantee nothing will go wrong. 

Since the drain was installed the bile has begun to flow. Now we watch the numbers, check all the vitals, and wait. As of Saturday morning the numbers look like they have started in the right direction but she is very tired from the constant saline and antibiotic cocktails. Plus it's not easy to get a full night's sleep in a hospital. The lying in bed part, that stiffens you up and swelling sets in. So I got her to walk around the corridors for a while. More tomorrow.

To cap off the day my daughter, Deidre, Danny and their family visited for a couple hours. We got to talk about Evan and Mia's classes and their projects instead of blood and bile, their parents' activities instead of gloom and doom.

  

What Else?

(Geoff writes) Still here. Seems like one step forward, two steps back at this point. Susan had an MRI in the morning, and if that wasn't enough, they took more images around noon. Both times they administered sedatives to relax her. If she was any more relaxed she'd melt.

On the bright side the sun actually came out for a few seconds this afternoon, brightening up a gloomy week. And we had visitors who weren't dressed in either scrubs or white coats! There was the Rabbi, who I first met at a local biking event, Jordan, Jennifer, and Frank. Susan was happy to see faces other than mine for a change. 

But now the doctors have new data from this morning. So far the antibiotic barrage is keeping the infection at bay, but her liver numbers are still too high to safely administer any cancer treatment. So to solve this problem bile must be drained from the liver in a procedure slated for tomorrow. Hopefully they can make an internal drain, but if not, it has to be done externally. I guess we all know what that means. Though the good news is that it doesn't have to be permanent.

Susan says she feels like an observer during this whole process, watching someone else's misfortune play out. For me it is also surreal. Maybe helplessness is more like it. All I can do is provide support and show up. 

Back in the Hospital - AGAN!!

 But first, before I forget, one of the sweetest things about St. Luke's is that every time a baby is born, they play ice cream truck music all over the hospital.  I think it's pretty cool.

Getting back to the matter at hand, getting ready for Tues morning's visit was quite strenuous.  I was literately like a rag doll.  Having not one but two episodes the night before.  Geoff walked me into the shower and basically helped me up while I tried to wash myself.  The shower chair is now back down from the attic. He also managed to get some clothes on me and we were off. I was not missing this procedure.

Fortunately, I passed all the vitals tests and then that was that.  The procedure went well.  I did have to be in recovery for 2 hours to watch for bleeding.  No bleeding but guess what?  I started to get a fever episode. No one would give me Tylenol because of my lousy liver.  After much screaming and writhing I got my pill and then moved into PAKU - another higher up recovery.  Or they just don't like people screaming around the general public,  No visitors in PAKU. Of course, Geoff broke that rule. In the meantime they did the big nose swab for all that crap floating around out there.  Clear as a bell.  Going up to the room - with the lovely Joe who might become my personal uber.

Much better room than last week.  Even have a view of the turbine stations.  Gives G something to look at.  Lots and lots of tests last night.  No one knows where the fever is coming from.  And then there was another fever episode,  And again, PLEEASE GET  ME TYLENOL, Still the same old argument  as I am shivering away.  Eventually got the pill and things settled down.

Very busy morning - Drs. coming and coming.  They are suspicious that there is bacteria in the bile duct which these massive doses of antibiotics should wipe out.  Hope so. I can't have another attack for 24 hours until I go home.

(Geoff writes: Just as Susan finished the above, she had another episode. This time everyone was witness to it and the consensus is that the bile duct may be the center of infection. This is a nasty business. They want to schedule another endoscopy and Susan is less than thrilled. 

On another note, for her Valentine's Day gift, she has an appointment with the pancreas guy at Dana-Farber on Feb. 14.)

Sorry this took so long to get posted. It's been very busy here today.

Love you all and take care of yourselves. -s

S&G

Three Days Out of Hospital

 Well it turns out the chills and shivering were not anxiety but fever.  Although the anti-anxiety meds worked to calm it all down and I did sleep all day, I do not want to spend my days as a zombie.  When it started happening on Saturday -and, oh by the way, it is accompanied by a lovely kind of pain that runs down my left hip to the leg -- I knew I had to try something else.  So I popped a few Tylenol and within 45 minutes the shivering stops and pain stops I start to sweat and the fever goes down.  It's just a horrifying 45 minutes. I wasn't really a zombie but I was exhausted so it was back to bed and sleeping on and off the whole day listening to the rain.

By Sunday, I was all prepared to feel better - no more episodes.  Not so much.  I had one in the morning as I made a very serious attempt at reading the Sunday Times.  But it was my mission to get out of bed and try to take a shower.  Maybe even venture downstairs.  Which, horray for me, I managed to do.  I got my shower and went downstairs for lunch.  Speaking of food, this could be another reason I am so weak.  I haven't eaten hardly anything.  Geoff is doing his best and I have to be very careful what I intake but once I have an attack all bets are off.  It happened last night right around dinner.  None for me thanks.  Drinking plenty though. I woke up early because I was hungry.  Good sign.  I was able to watch both NFL games stress free thanks to the Patriots.  Anyway, after the last episode I started taking Tylenol as a precaution instead of waiting until it starts to come on.  We'll see how that goes.

I want to thank everyone for all their kind and generous words and offerings.  It helps so much to know that you are all out there.  I knew when the drugs were wearing off  I began to weep again.  I look at Geoff and just crack.  And all my family and friends are here for whatever we need.  It just turns me into a puddle.  I never once thought I would be "that" person.  It's like an out of body experience - like watching one of those medical shows on tv.  And this has been the first week.  I haven't even started treatment yet.

Speaking of treatment, this liver biopsy is very important because they need to identify the cancer.  The pancreas biopsy was inconclusive.  So please whatever it is you do -pray,light candles  cross  fingers, throw sticks - concentrate on it being a cancer they can treat.  I understand that as of today it is not curable but if it is treatable I might be able to hang on with the hope of science. Of course, quality of life comes into play.  But I have a better spirit than I did in the hospital.  I was so ready to just say take me.  The drugs are depressing and you don't feel anything.  Without them I can feel the difference. I want to fight this MF real bad  So keep the good juju coming.  Let's hope today is a better day.

Love to you all - take care of each other -s

PS. There is a place for comments right under the post.  If that doesn't work than just email me.  Please do not use the email form. If you are receiving the updates than you are on the list,  Thanks.

A Unexpected Journey

For those of you who know the latest news and for those of you who don't, I've decided to turn this travel blog into my medical journal.  We have so many caring family and friends, I felt this might be a better way to get everyone caught up rather than to keep repeating everything.  So that when we do see or speak, maybe we can move on to more pleasant things "How's that book you're reading"  "Seen any good movies lately". Of course, anyone who wants off the mailing list just say the word.  No pressures. And feel free to call with questions if we can answer them we will.  I am hoping that it might be a cathartic way to unburden myself.  And who knows, maybe help others some day as well.  So here goes:

On Jan 14th, after much testing and imaging, I was diagnosed with pancreatic cancer that metastasized to the liver. This is not good.  Of course, I went into hyperdrive and set up a "team".  A gastro and oncologist in Fairhaven as well as setting up an appoint at Dana Farber.  I met with both Fairhaven doctors and went to the Dana Faber diagnostic center.  Everyone keeps telling me I'm perfectly healthy - except for.......  I am hoping that this makes me a good candidate for a clinical trial.

On 1/22 I was scheduled for pancreatic biopsy. The procedure was done endoscopically with a camera.  They also put in two stents - one to open the bile duct which was blocked and a temp stent in the pancreas to get to the bile duct.  

Not to get into the gory details but the bile duct stent worked but I developed pancreatitis - which is an inflammation of the pancreas.  So back to St. Luke's we went.  I got checked in on Wed, on Thur they pulled out the temp stent.  The biopsy report show that it was inconclusive.  I will need a liver biopsy.  All of this meant that I would not get to meet the pancreatic specialist at Dana Faber. Coming back on Tuesday for the liver biopsy.  I've had enough of St. Luke's hospitality.

Our friend Paula came by yesterday as did Deidre and Geoff.  Geoff came back at night to watch the Celtics blow the Heat away!!

Managed to escape the hospital yesterday morning.  Shivering all the way home.  Got into the shower still shivering - found out it could be anxiety - panic attacks - you think??  Climbed into bed, took an anti anxiety pill and slept till about 7pm.  Geoff had a shake and one of Paula's homemade Italian anise cookies waiting for me.

This morning things are still moving slow but I feel if I can rest up on the weekend I'll be good.

Love you all -- take care of each other -s

 Due to unforeseen circumstances, we have been forced to cancel our Great Australian Adventure.  We would like to thank Kash Patel from Baryia Travel in Newton, who worked so diligently for the past 9 months getting this itinerary together.  

We are very saddened to do this, but at this time, we have no choice.

Take care of yourselves and each other -

love, Susan & Geoff