Elizabeth passed away

After making sure she proved every medical professional wrong, including her parents, about her strength, Beth peacefully passed away the morning of April 30th. Details about funeral arrangements can be found  here.

No update

Beth is still with us. She is a strong woman. I will post an update when things change.

No real change

Not much has changed since Tuesday. The staff at Highland is doing a terrific job keeping Beth pain free, and she has family members at her side around the clock.

Update on Beth's condition

Some very bad news and there is no easy way to put it. Beth was feeling good on Saturday and then on Sunday things started going badly. She is now in the hospice care. The kidneys have mostly stopped working and it is now only a matter of days. We will update the blog as things progress.

Latest update (from the guest blogger)

Beth had the surgery on Wednesday. It went well but the surgeons couldn't do as much as they wanted to. But they think they have resolved the blockage issue and she will be able to eat soon. She is now recovering and needs lots of pain killers, and does not really want visitors for the next few days. She will update the blog when she feels better.

Dr. Bif who?

Sure has been a long time n'est ce pas?  Not much to report. I successfully made it out of the horsepistol (that's what my Dad always called the hospital).  I'm going back in the day after tomorrow for surgery.

I have a couple reasons for keeping it short tonight: It's possible that this date may change at the last last minute if we can't get urology on board.  I'm on pain medicine and my typing skills are less than perfect.  Good reasons for short and sweet I think.

I do want to send out of few thank you's however. The ham/bean soup smelled lovely and my family assures me it tasted as good as it smelled. 

The ride on short notice was a big help.

All the craft projects for my crew were fun. We never ate many of the colored eggs.  They seemed to get dropped at an alarming rate.  Worth it.

I have located a "ghost knitter." I think she is going to finish her bit before me but pain medicine does interfere a wee bit with hand/eye coordination.

I've appreciated the cards and calls. I love the lotion/cremes.

I can think of only one other who needs a thank.  If I forgot you, it's probably the drugs.

Finally, I thought I married a great guy.  Now I know it for sure.  He sure has stepped up to the plate with well, everything.  He's a terrific father.  He's got dinner under control every night.  He's on top of homework, music lessons and hebrew school and still finds time to spend with the kids going to the park or a movie.  He helps me with my IV medicine every night.  Now that he's been thoroughly embarassed, someone do him a favor. He needs to go out for a beer.  Albert, Craig, Doug...?

I'll update about the surgery as soon as I have any details.

Love,
Bif

boring housekeeping stuff

Still locked up in the grey tower (well it's grey on the inside).  Just a boring note today to take care of some housekeeping issues.

Will be here a few more days.  Need more antibiotics and a quick procedure on these nephrostomy tubes.  I also need blood and platelets.

I just discovered that the phone in my room's ringer isn't turned on.  If you've been calling it I haven't noticed it lighting up.  Better to just call my cell phone.  If I don't want calls it will be turned off.

Any of you knitters out there feel  like helping me finish a project?  See if you can guess which one it is Guildees.

All for now.

Beth

My own wing of the hospital...

The administration is thinking of renaming 5East after me since I have become a permanent fixture.  I came in yet again within 24 hours of being discharged.  Technically these aren't "bounce backs" since I present with a new problem each time.  Yesterday it was a new fever and belly pain.  All is well.  My platelet count is low (30) but my white count is fine meaning I'm not immune compromised.

Dr. Angel spoke to me this morning about surgery in a month.  This would be to relieve the bowel obstruction that doesn't seem to want to get fixed by the new chemo.  Pretty exciting.  The possible results are a complete reversal of the obstruction and normal eating or a reversal of the obstruction but not enough of my own intestine left so that I would still have to rely on IV nutrition.  Still I would have no pain and I'd be able to enjoy some food.  Very worth it.

More details as conditions warrant...

Thank you everyone who has continued to send good thoughts.  It means a lot not to be forgotten up here in the grey tower.  Give me a call and come visit if I'm awake!

Beth

Officially bored....

Got internet access back.  Still here at Highland.  Just getting IV antibiotics and some blood.  dr. Angel is going to keep me here for a couple days until I'm ready for chemo.  Alain and the kids are fine.  Food doesn't seem to be a problem.

It is for me.  I still can't eat.  Not that I have an appetite but I miss food.  Oh well.

Visitors would be fine.  Just call ahead to make sure I'm here or not asleep.  Hope to see you, miss you all.

Beth

While watching the snow falling

Hello,
I don't have internet access right now.  Got admitted with a fever from an infected picc line on wed.  Highland's old relic for patient use is down.  Wouldn't mind a few visitors.  Just call ahead in case they've sent me home.

Beth

still here...the queen of complications

the latest complication has been a line infection and leaking nephrostomy tubes.  the port that has served me well for 5 years had to come out this morning for a candida infection of all things.  that will only mean something to you medical types.  it's unusual.  they also changed one of the tubes in my right kidney.

I've been pretty sick with the line infection and have hunkered down, sleeping a lot.  my parents came back today so we will be good with food while they are here.

just a quick update.  back off to bed.

I lied

I lied.  I'm still in the hospital.  Had some bleeding after the procedure.  Needed a blood transfusion; my platelets were pretty low too.  Having problems with pain control....looks like another 2-3 days here.

Thanks for all the food Alain and the boys have been feasting on.  They are good right now so please don't send any more just yet.  I'm jealous.  No solid food has passed these lips since January 8th.

I miss you all.

Beth

Radio silence...

I was pretty quiet last week.  At home I wasn't feeling well.  I had  a good reason.  I was working on getting my potassium dangerously low and dehydrated.  My buddy Ann took me in last Thursday to get those problems fixed.

I need a quick procedure today for the kidney tubes and I may go home later or tomorrow.

We are good with food right now.  When I'm home I may need some folks to drop by and check on me.  I am craving, craving, craving a bowl of raisin bran.  It was a staple of my childhood.  Like some Japanese foods there is a ceremony and certain way of eating raisin bran.  Most school mornings and definitely before any swim meet I performed the Raisin Bran Ritual.

Choose a large bowl with sloping sides.  Put in at least 2 servings full, less if a parent is watching.  Add some sugar but take care that it not go all the way down into the flakes.  The majority should sit like snow on Mt. Kilimanjaro.  Your choice of milk is very important.  It determines the experience you will have.  You can have any kind of milk but be aware of the different texture and flavor each type (skim, 2% or whole) will create.

Choose a medium sized spoon that is not too wide.  It must be large enough to gather many flakes but you should not have milk dribbling on your chin.  This is not proper.  Gather the flakes from the sides of the bowl using as little milk to eat as possible.  Avoid the raisins.  You may eat one or two raisins every 4th bite.  You may also consume some of the sugared flakes which takes skill so as not to pour the sugar off into the bowl.  Feel the sugar crunch with the flake in your mouth.

As you approach the bottom you will have mostly milk and raisins.  It is time to dive for mussels.  Scoop out as many raisins as you can and eat them in one mouthful.  Note the firm texture of the raisins has softened up ever so slightly with the milk.  When you have finished the raisins you may now pick up the bowl, swirl any sugar to dissolve and gulp the sweet milk.  You are done.

Now go!  I have no more time for your impertinence.  We will eat of the Kellogs when you are ready.  You have much to learn, young grasshopper.

Eagle almost landed...

I went home on Monday, late afternoon.  The oral pain medication we had in place wasn't adequate and I ended up back in the hospital.  We're working on a better regimen and I'm doing better.  Will be home in a day or two, likely Friday.

My sister comes into town today and my parents will leave tomorrow so we're good with help in the house.

If anyone would like a little job to do...I'd like to get the nurses something before I go.  The nurses of 5East are remarkable people.  I found out they like good coffee.  Would any of you like to help put together a coffee basket for them.  It would need 3 bags of gourmet coffee; one for each shift.  not really strong stuff like espresso or french roast.   And maybe some other treats like some biscotti.  I don't want this to get too elaborate.  I will reimburse you for it of course.  If you can, please post that you are undertaking the mission here on the blog or let me know so that we don't end up with 15 bags of coffee.  Thank you!

That's all for now.

beth

on the day i went away, goodbye was all i had to say...

Tomorrow I am supposed to go home.  I haven't been answering calls again today.  I got so much steroid yesterday with chemo I am not fit for human consumption.  I'm a big ball of nerve endings.

My parents are still in town and Mom is cooking.  We are really doing fine and I can't for the life of me think of anything I need.  I'll be home during the day and short visits are better than phone calls.  It's gets to be work to explain the whole scenario repeatedly.  I hope you all understand I'll be screening the phone.  I get email on my cell phone which I have with me all the time so feel free to drop me a line.

I'm going for a nap now!

b

All quiet here

Hello,
Not much to report.  My labs look good so I can continue with the new chemo as planned for tomorrow.  Oh joy.  I feel a bit like a bull that was just fatted up for the sacrifice tomorrow.  That's a bit dramatic; I'm just not looking forward to feeling crappy.  They are better about getting pain medicine into me than I would be taking it at home so it'll be fine.

Last night I talked about food with a patient care tech who grew up out in the country in Georgia.  Her mother used to send them out to the field to pick greens and vegetables for dinner.  They would bring in summer squash, okra and half ripe tomatoes which Mom would coat in corn meal and fry.  Sounds great, especially the tomato.  Sometimes the green ones taste better than the red ones to me.  Kind of like a sweet eggplant without the bitterness.  Ann also waxed prophetic about greens.  Huge pots of greens cooked with some kind of smoked meat.  The greens would become tender only after a couple hours but as a child she and her sisters ate those huge pots full.  Nobody gets and expression like on Ann's face about Lunchables, let me tell ya.

I grew up in NH.  I ate like royalty growing up as you've heard from tales of Granny Franny but I didn't eat that food.  Southern food has become the "it" cuisine now.  All the cooking magazines have recipes for pulled pork and fried green tomatoes.  Here's another good one from Ann: cornbread with pork cracklings crumbled in.  I can't eat any of that stuff now.  I can cook the greens when I get home and drink that cooking liquid called "pot liquor."  It's dark and tastes of minerals.  Can't wait.

I'm going to torture myself with another cooking magazine now and dream of spring eating.

Beth

An embarassment of riches

Again, sorry to not have posted for a few days.  I'm kinda like, sick ya know?

I am so lucky to have so many caring friends.  I love you all and feel so grateful knowing you are all out there willing to help.  So how do I say this delicately?...um...

I don't want to talk to you.

I'm not sleeping well at night here and need to catch up on sleep at other times.  I'll try and keep the blog updated (Alain could help with that again) and I'll try and remember to turn my phone off when I don't want calls. 

Ok, so here's the update.  I'm a sick little puppy.  I have a tube coming out of my stomach to drain the ongoing bowel obstruction.  I will not likely have any real food for a couple weeks.  I may go home in a couple of days.  I will be getting nutrition through the IV.  The kidney infection (or wherever it came from) is getting better.  I will also be getting IV antibiotics at home.  I'm still having a fair amount of pain and need medicine for it regularly.  Dr. Angel thought I should count on a 6 week recovery and be pleasantly surprised if I am back sooner than that.  I'm usually a quick heal.

According to Dr. Angel I look a whole lot better than when I came in.  I can only imagine what that looked like before.

Gonna go bag some zzzz's now.

Beth

Root beer to float the day away...

Sorry, it's been a while since my last post.  Time loses meaning here.  I'm still at Highland.  I am doing much better.  After reviewing the latest CT scan my doctors have decided the best way to address my problems is to change my chemo regimen and let my bowels rest.  So no surgery for me.  Yesterday I got something called a gastrostomy tube into my stomach so I do not need to ever again have a tube put down my nose.  I will go home with this and can relieve any pressure from my gut if it chooses not to work again.  I'm getting fed intravenously and will have that during the night at home.

All this is temporary.  I won't be eating solids for a while but I can drink clear liquids.  Last night I had a juice festival.  Tonight Alain visited with my boys and brought, at my request, root beer and vanilla ice cream.  We made floats.  Ok, vanilla ice cream doesn't count as clear liquid so I just had a little.  He left me the bottle of root beer though and I'm about to float away on a brown river of bubbles.  My mouth is really dry so I just sip, sip, sip and try not to overdue it.  My stomach drains into the gastrostostomy tube and into a bag so what goes in just flows out.  Kind of a bulimic's dream really.  Maybe that's in poor taste.  Ok, it is in poor taste.  I must be feeling better.

I am doing much better than when I showed up here due to the nutrition I've gotten and the hydration.  I've had a kidney infection while I'm here and had a fever but now that it is treated we are starting to make plans to break me out of this joint.  I'd ask someone to send a file in a bottle of grape soda but the soda would probably dissolve it.

See you soon on the outside.

Dr. Bif

The Highland Pole Dance

No, I'm not talking about Scottish strippers.  Any other guesses?

The Highland Pole Dance is what you have to do after you've wandered around with your IV pole and then have to walk around it several times to untangle the lines.  Ooh ay, it's dead sexy!

I went in to the emergency room on Saturday.  I had been on clear liquids for the two days prior and wasn't getting any better.  It was pretty clear I needed some hydration and pain control.  I didn't realize how bad things had gotten until I got some pain control.  So I've parked my butt here in the hospital and we're trying to decide what to do with me.  It is very likely they will take me down to the operating room to try and relieve the intestinal blockage.  No one is very excited about this because I've had radiation and if they try to sew bowel that has been irradiated there is a good chance it won't heal.  There is also a chance that the blockage is being caused by cancer that has wrapped itself around the intestine.  This prospect frightens me more than just a little.

Unfortunately I've gotten worse since I've been here so something needs to happen.

My parents are arriving this afternoon.  Alain has been managing everything like a trooper.  He's getting tired though.  If any of you have an idea how to give him a break I'm all ears.  My folks can help in this respect as well.  we're good for food at the house.  I will let you all know what the plan is when I get more information.

Dr. Bif

Hannukah Harry vs. Santa

I hope you all had a nice time with your families over the holidays and had fun stimulating our nation's economy.  We go both ways at the Leblanc household.  I have chosen to practice and raise my kids as Jews but I can't let go of Christmas.  Growing up the Friedman household did it up big, the tree and the presents that is; let's face it, Christmas at the Friedman household had all the religious fervor of Halloween.  So it is easy for me to continue to embrace Christmas because it's about Santa, not some other guy's birthday.

This year a happy Christmas was a close shave.  One week prior I fought with belly pain all night and after spewing my guts like Linda Blair a couple times I had to admit I needed to go in for another bowel obstruction.  I was admitted and after a day of things not going well the NG tube fairy made another visit.  This time in the form of a gyn resident who was as nice as anyone can be who is shoving something into your nose and down into your stomach.  After about a day the stupid thing caught on the gurney coming back from radiology and slithered out.

The second NG tube fairy came in the form of a surgery resident who meant business.  She picked a bigger tube.  That baby went down there to stay.  I cried like a toddler getting her shots.  The resident seemed a little indifferent to my discomfort as if some inconsequential place like the nose couldn't possibly hurt that much.

And there I sat.  I was chained to the wall by that NG tube hooked up to suction in an effort to decompress my swollen, twisted bowel, the NG tube made even more special by a sinusitis I picked up from Adam before I came in.  I was sent for studies to see if the source of the blockage could be determined.  I had a CT scan and was told the next morning that there may be a new mass in my pelvis causing the blockage.  Thunderstruck is a good adjective to describe my reaction.   A CT scan less than a month ago showed very little cancer.  In fact some of it had improved.  The doctor who was covering for mine and I determined that they weren't comparing the new scan to the most recent.  She trotted off to check this out after telling me about the possibility of a feeding tube.

After she left I threw the food magazine I had been reading across the room. 

I wasn't ready for this.  This was the beginning of the end.  Time to call in a favor.  I called my friend Barb and explained the situation.  I needed a real radiologist.  Barbara is not a radiologist but an internist.  However, her husband is.  Barb calmly took my information and got right on it.  I never saw Barb during an emergency like an ice storm but I bet she loves them.  She had that Hall of Justice, steely determination in her voice as she told me she'd call Steven and he'd get right back to me.

Steven did get back to me in a couple hours while I calmly watched NCIS (no joke).  He not only read the CT but had several other guys in his department read the thing as well.  No change from previous films.  "ohhhh!" was all I could say at first as the reality of the thing just hit me when he called.  Later I sent him a text message: Thank you Hannukah Harry!

So it's the surgeries and radiation that have caused this in case you're wondering.  It was now a matter of getting over the current mess and getting home.  Things were progressing slowly and it didn't look like I was going to be home for Christmas.

Now here comes Santa.  My parents were spending the holiday with my sister in Boston.  On the night of the 23rd they decided to come to Rochester.  On Christmas Eve they loaded up the SUV and Granny Franny's Land Yacht with all the gifts and food they had planned for their Christmas and road tripped to Rochester.  They arrived in the afternoon and the grownups came over to the hospital to visit me and bring a webcam so I could watch the kids open presents in the morning.

As they walked into my room I was clawing at my face like Sigourney Weaver in Alien.  I had been blowing my nose when I was suddenly seized by fit of sneezing ten times followed by a sensation of several razor blades in my nose.  Barb also chose this time to visit.  "Should we get your nurse?"  I could hardly talk and tears were shooting out my eyes.  Barb being practical said, "well, that tube just has to come out.  You want me to help?"  "No, don't piss off the nurses!" I said for inexplicable reasons.

My nurse came in and wanted to put the tube back to suction.  It had been shut off because the obstruction had been improving.  My mother, also a practical woman said, "what the hell is that going to do?"  She was right of course but I'm not sure I'd have phrased it that way.  When the suction was turned on it was like a Hoover in my head.  It took me a minute to realize that the end of the tube was not in my stomach but in my nose.  I'd sneezed the damned thing out.  So out it came.  My wildest dream come true.

Would I make it over night without having to have the tube replaced?  I'd rather have pulled out my own thumbnail.  I slept overnight comfortably.  I even got to eat some jello after a few hours.  The bowel obstruction was over.  I made it home Christmas Day just after lunch.  The kids had waited patiently all morning, pacified with Christmas candy, and I opened presents with everyone that afternoon.

God bless us, every one!  Oy!