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.