Dilation and Bottle Caps

All has been well since my last post.  Larry is working full time and feeling pretty good.  However, for the past month he has noticed that swallowing seems a little "tight".  He had heard of other patients getting "stretched" to help with this feeling.  It's called "dilation".  I called the surgeon's office to find out more and they scheduled an endoscopy for Friday (November 4).  The surgeon sent a camera down Larry's throat to check things out - everything looked great and he did the dilation.  Larry's got a sore throat, but that will go away in the next day or two.  It was reassuring to know that everything looks good - all the way to the small intestine!  Next visit is early December.

Now to explain the bottle caps.  My co-worker, Lynne, has been collecting bottle caps for her artist cousin who uses them for art projects.  I have been donated caps for a while.  Over the summer, the artist came to our local science museum to make a mural.  When I saw a photo of the finished work, I thought I recognized unique caps that came from Larry's feeding tube bags.  Yesterday, Mike and I went to Imagination Station to check out the mural.  Sure enough, Larry's purple caps were part of the project.  I've attached a few photos to show you.  The mural is 12 feet long by 8 feet tall.  A great way to recycle plastic caps!

12x8 mural

Big purple lids are from Larry's feeding tube bags.

We recognized cream cheese lids, milk caps, detergent caps...

shampoo caps, pop caps

and more.

All Clear!

We (Larry, me, Stephen and Mike) were in Cleveland Thursday for Larry's follow-up appointments.  The day included bloodwork, chest x-ray, CT scan and three doctor visits.  All tests results were good - No Evidence of Disease (NED).  We didn't expect anything different because Larry has been feeling pretty good.  He's still not back to his full energy level, but back to work full time.  Larry will need to return every three months for two years, then every six months for a while.

While there, I stopped up to visit George while Larry was having the CT scan.  George is undergoing the post-surgery chemo and radiation.  I was honored to have George read me one of his poems and sent me home with a signed copy - Thanks, George.

The day ended with our angels, Pete and Laurie.  We met them for dinner in Westlake.  Good friends, good times, good food.  We are so blessed to have met Pete and Laurie! 

The weather was good until we got close to home, then it rained so hard we could hardly see.  I was driving about 40 on the turnpike with my flashers on - everyone was going slow.  Almost missed the exit.  Two miles later - dry pavement.  Weird.

Pat

Almost 10,000 E-Mail Messages!

Larry went to work last Thursday and Friday for a trial.  Before he officially declared that he was ready to go back to work, he needed to see if he had the stamina for a day in the office, so he went in for those to days to get passwords reset, start sorting through e-mail, etc.  He had almost 10,000 e-mails!!!  (Last day of work was January 28 - 6 months = 10,000 messages.)  The test run was successful, so he is OFFICIALLY BACK TO WORK as of Monday, 7/24.  WOOOOHOOOO!  This week he is working 10-3 and after three days is very tired.  He may need another week at part time, but the goal is to be full-time very soon.

Other than the continuing fatigue, everything else seems to be back to normal - or as normal as it can be after the surgery he had.  All wounds are healed, taste buds are working normally, no complaints of offensive odors that no one else finds offensive, appetite is good.  We will be in Cleveland for several appointments in mid-August - all routine follow-up appointments.  I'm guessing we'll be on a 3 month schedule for the next year then appointments will be less frequent. 

I'm not sure I have ever explained the surgery Larry had, so I'll give a brief explanation.  The standard surgery to treat esophageal cancer is called "esophagectomy".  Most of the esophagus is removed along with the top quarter of the stomach.  The remaining portion of the stomach is pulled up to reattach to where the esophagus used to be - 2 to 3 inches below the base of the neck.  So the stomach is now a tube, so can no longer hold and entire meal - so several small meals are recommended.  Patients who have had both esophagectomy and open heart surgery say that esophagectomy was harder on them than the open heart.  I am still amazed at how well Larry did following such a major surgery. 

Enough for now.  There probably won't be another entry until mid-August after the appointments.

Pat

Another Milestone!

Larry had his central port removed today at our local hospital.  Local anesthesia and dissolvable stitches were used.  No follow-up required.  Larry just needs to keep the incision dry for a few days. 

This is the last procedure for Larry !!!!!!  Next steps are return to work and periodic check-ups.

Thank you all who are still following Larry's story.

Pat

Bearcat Adventure

Wednesday evening (7/6), we travelled to the University Cincinnati for freshman orientation (7/7-8).  Larry got around campus on a rented electric scooter.  We're all grateful that he was able to participate.  Even with the scooter, he was exhausted by the time we headed back to hotel.  We had hoped to stay in town for a couple extra days to see the sights around Cincy, but it was too much for Larry.  We settled for a stop at Dave & Busters (arcade) on the way home.  Stephen signed up for his 1st quarter classes and is very excited about started on his college adventure. 

Pat

Outback and Fireworks

Great progress since the last time I posted to the blog.  WOW - over 10,000 visits to our website! 

On June 25, we hosted a graduation party for Stephen.  The boys did a great job helping get ready for the party and Larry did a great job letting the boys do all the physical work.  We all enjoyed seeing family and friends.  By the time everyone left, Larry was exhausted.  Rest up Larry, we're doing it again next weekend.

Outback Steakhouse was our destination for dinner on Saturday.  Larry and I shared a meal and appetizer.  We were both more than full.  Larry's appetite seems to be returning and foods are tasting "almost normal." 

On July 3, we hosted our annual fireworks party.  Again, the boys did all the work.  Larry seemed to have more energy this time, but still very tired by the end of the night.  Larry's angels, Pete and Laurie, drove in from Cleveland.  It was great to see them in a non-medical setting!

Larry is scheduled to have his central port removed on Monday.  He is napping less and seems to be stronger with more stamina.  His goal is to return to work before the end of July.  WOOOHOOO!!!!

Pat

Seaweed and Silver

Did I get your attention with that title?  I'll explain.

Early last week when Larry was hospitalized for the infection, they did a procedure to "open" the wound.  What they really did was make a deep incision where the feeding tube had entered his body.  About  1.5 inches long and 1.5 inches deep.  YIKES!  Since we've been home, a nurse has come in twice a day to "pack" the wound with gauze and cover it.  I kept my distance for these visits (distance = in the other room).  Well, between Larry and the nurses, they decided that it was time for us to do this ourselves.  Thursday was the last nurse visit (they will be back in a week).  As of Friday, we're doing it now.  They switched us from gauze packing to something called SilverCel which allows us to change it only once per day.  SilverCel looks like gray felt and is made from seaweed and silver.  Apparently both contain natural antimicrobial properties that help promote healing. 

Pat

Two Month Break

The trip to Cleveland yesterday went well.  The surgeon's office says the infection site is healing well.  It will be an open wound for another 3 weeks, requiring daily nurse visits.  Next visit 2 months!  The oncologist (chemo) thought Larry looked pretty good and was happy with his eating progress.  Next visit 2 months!

Yeah - no Cleveland for 2 months!  We will NOT miss the drive.

Pat

Graduation and Family Meals

What a great ending to a week that didn't start so well.  Our oldest son, Stephen, graduated from high school this afternoon.  Larry was able to attend the graduation ceremony and dinner afterwards.  For anyone curious about what he ordered - he split a philly steak and fries with my mom.  It tasted pretty good, but with a few bites of appetizer and dessert, it felt like a huge meal.

Over the past few days, Larry has been joining us for dinner!  Up until now, he hasn't felt like eating the same food as the rest of the family.  Food is starting to taste normal again.  It's nice to have him back at the table and nice to be able to fix the same thing for everyone.  Another step towards "normal".

Hoping that Brad (the down the hall neighbor at the hospital this week) was discharged over the weekend and is recovering well at home.

Best wishes to George and daughter Susan as George prepares for surgery on Tuesday.

We're back to Cleveland Tuesday for a check-up - expecting it to go well.  (I'm not packing a bag this time!)

Regards,
Pat

Appointment Confusion

We are not going to Cleveland today - WOOOHOOO!!!

On Tuesday hospital staff said we needed to come back on Friday since Larry was being discharged after 24 hours instead of the preferred 48 hours.  The discharge papers showed an appointment time, but I didn't pay much attention to it.  I pulled it out this morning to verify the time and found that the date was yesterday.  Turns out that was the original appointment time before we made the unscheduled visit on Monday.  When I called to find out when to come today, they said it was too soon.  Anytime next week will be fine.  So we're trying to coordinate an oncology visit and surgeon visit on the same day. 

We are so happy that we won't be spending 5 hours in the car today!  Larry's task for the day is to try on clothes to see if he has anything that fits and is appropriate to wear for Stephen's graduation Sunday.  He's lost 60 pounds since the first of the year.  I may be going shopping Saturday!

Pat

Jail Break

Larry made his escape at about 2:30 today.  Once again, it's good to be home.  On the way Larry said that he was feeling better than he's felt for at least the past couple weeks.  Before we were discharged we met with a dietitian who had some excellent suggestions for consuming 2000 calories when one doesn't feel hungry.  The nurse practitioner also changed some medications that should eliminate the nausea.  They also coordinated the visiting nurse who will be coming tomorrow morning and twice a day for a while.  I am very impressed with the level of care.

We'll be going back on Friday for a follow-up and probably again next week.

Pete and Laurie -  Thank you so much for stopping in for a visit.  My call was just to let you know what was happening, I certainly didn't expect you to change your plans and head to the Clinic.  Much appreciated though!  And thanks for introducing us to Brad and Debbie.

Brad and Debbie - It was nice to meet you both, although I would prefer different circumstances.  Brad, thanks for stopping in to meet Larry today before he checked out.  We are truly amazed at how good you look at 6 days post-surgery.  You've got a long road ahead, but you are recovering well and seem to have a good outlook.  We hope you stay in touch through the blog or e-mail.  Let us know if you set up your own blog, we'd like to follow your recovery.  I chose blogger.com because it was free, easy to set up and simple for folks to follow and post comments. 

Pat

Checking Out Today

Things are looking better today.  Doctors did a minor procedure to open the wound to allow drainage.  They will be sending Larry home today with oral antibiotics and visiting nurse to re-pack and change dressings twice a day.  Doctors would feel better if Larry stayed another day, but agreed to let him go today as long as he came back for a re-check on Friday.  I'm sure we'll be back next week for another follow-up. 

A small bump in the road, but still headed in the right direction.  Glad we got it taken care of before it got worse.

Overnight Guest

My last post was June 1 when Larry's feeding tube was removed.  Lots of activity since then.

By Friday, not much had changed, but also hadn't gotten any worse.  Cleveland Clinic advised to monitor closely over the weekend and if it got worse, go to the ER.  Otherwise call on Monday. 

Saturday - still no change in the icky stuff and Larry seemed a little worse, so we went to the local ER (Flower Hospital).  They consulted with Cleveland Clinic, cultured the icky stuff, took a blood for labs and culture and took abdominal x-rays.  Cultures take 2-3 days so still waiting for results.  But other labs and x-ray looked good.  He had a low-grade fever.  They thought icky stuff looked like an infection so gave IV antibiotics and sent us home with oral antibiotics.

Sunday - seemed to feel a little better, but very slightly.

Monday - icky stuff not looking as icky.  Called Cleveland Clinic to report the weekend activity.  Should we keep our appointment for Thursday or do something different.  They wanted us in Cleveland for a CT scan.  Neither one of wanted to drive to Cleveland.  Arrive 12:30, drink huge bottle of "contrast" fluid, wait an hour, get scan, report to surgeon's office.  Physicians assistant thought the wound didn't look too bad, but the CT scan showed infection.  She consulted with one of the surgeons who said the best course of action was IV antibiotics.  So guess what?  ADMITTED.  Larry is back on the same floor he was on following surgery.  Larry is not a happy camper, but realizes this is the best treatment for attacking the infection and probably the best thing to guarantee that he can attend Stephen's graduation on Sunday.  Several folks were in to inspect the infected wound - all seemed to think it was not a very serious infection and would be pretty easy to fix.  The doctor in charge will be in early in the morning.  He'll be the one to determine whether we can head home tomorrow or if we need to stay another day.

This certainly not how I planned to spend my Monday, but I'm glad we're here getting the best care.  Hoping that the antibiotics do their thing over night.  I'll post an update when I get to the room in the morning.  I'm staying a few miles down the road right outside the ball park.

Pat

Great News (but unexpected)!

Following up on yesterday's post.  We made the trek to Cleveland today.  A nurse checked the icky ooziness (no more detail will be provided) and decided to replace the feeding tube.  Replacement is a simple office procedure with minor discomfort.  Following replacement an x-ray is required to ensure correct placement.  So the nurse inserted the new tube then called in the surgeon to review the lab results we brought from home and to check the tube before sending us to x-ray.  Surgeon decided that Larry no longer needed a feeding tube.  He thinks the tube is contributing to Larry's lack of appetite and overall yucky feeling.  So the new tube was removed.  Lab work looked okay and no antibiotics were prescibed.

LARRY IS TOTALLY DISCONNECTED NOW!!!!!  One week earlier than expected.  No food or drink for 4 hours after tube removal, the eating / drinking can resume.

He had built up to only 500 calories per day.  The surgeon is not too concerned.  Larry may lose a few more pounds before he builds up his calorie intake.  I'm hoping that the surgeon is right and better eating will start in the next day or two.  They want to see him back in 10 days.

The only procedure that remains is removal of the central port that was inserted in Larry's chest back in December.  That will be done at Flower Hospital and is a procedure that does not require anestesia.  Scheduling for after June 15.

Pat

Stalled Recovery

Larry's recovery does not seem to be moving forward.  I don't think he's feeling any worse overall, he just doesn't seem to be making any progress.  So tired all the time and no appetite.  Looks like the feeding tube will be with us a little longer than planned.

A couple days after my last post (5/21), Larry started getting “ickyness” oozing out around the feeding tube.  I called late one night an spoke to the on call physician.  He didn’t seem alarmed, but suggested we have our family physician check it and do a culture.  Culture shows no infection, but the oozing continues.  I called the surgeon's office today and they want to see Larry in the office tomorrow.  They may decide to swap out the tube - not sure how they do it, but a fellow patient at Hope Lodge had his replaced and said it was a pretty quick and simple procedure.

Maybe it’s all related to the issue with the feeding tube, or maybe this is normal after the “insurance” round of chemo/radiation.  In any case, we’ll both feel much better after the experts check him out tomorrow.

Another change for us.  I went back to work on 5/23.  Wooohooo!  Going to work never felt so good - a return to "normal".  Even though Larry isn't feeling as good as he would like, he has made tremendous  progress has been managing just fine at home.  School will be out soon and he'll have the boys to keep him company. 

I'll post another update Wednesday after tomorrow's Cleveland trip.

Pat

Taco Bell and Fresh Georgia Peaches

These are the only two things that taste good to Larry.  He tried a burger last night but the meat and the ketchup tasted odd.  He's not ever hungry, but is trying to increase his calorie consumption.  It's a struggle.

Mike and I got him out to walk through the produce section of Andersons today.  Small success.

He really is feeling a little better each day.  There is light at the end of the tunnel, it's just taking time to get there.

Pat

Goals: Walk & Eat

We were back in Cleveland for a check-up. 

• Bloodwork - looks good
• Chest x-ray - looks good
• Energy level - very low, but that's normal
• Weight - dropping a bit too rapidly

Next appointment is in 3 weeks.  Goals for the next three weeks:

• Between tube feeds and regular food - consume 2000 calories per day
• Increase regular food consumption so that all 2000 calories are by mouth
• WALK *** WALK *** WALK
• Keep a log of regular food - if Larry can show doc that he's getting enough nutrition by mouth, the feeding tube can be removed at the next appointment

Central port can be removed in June - something that can be done locally (since it was put in by our local hospital).

I will be going back to work on Monday - looking forward to a return to "normal."

Some have asked about the poem in the previous post - it is posted on the wall near the bell and is on a printed certificate given to each patient when they complete their radiation treatments.

Pat

In Celebration...

**~~**~~**~~**~~**~~**~~**~~**

Surrounded here by family and friends
One journey has ended, another begins
I ring this bell for treatments ended
I ring the bell for wounds now mended
For those who listen, my story, I tell
I celebrate life by ringing this bell

**~~**~~**~~**~~**~~**~~**~~**

Larry had his last radiation treatment today and rang the bell to celebrate.  One trip next week to check that his blood counts are normal, then hopefully a few weeks off before we go back.  As Larry's appetite returns he'll be weaning off the feeding tube.  He is still fighting fatigue, and will be for quite a while.  Dr. Videtich (radiation oncologist) compared what Larry's been through to being hit by a truck three times!  We're happy to be back home.

Feeling BLAH

The nauseousness has finally subsided, but the fatigue is ever present.  Yesterday and today Larry has been feeling jittery, restless, anxious, etc.  We're pretty sure it's from steroids that were prescribed for the nausea.  The last pill was taken this morning, so we are hoping that the restlessness is gone by morning.  Larry's appetite has not returned yet - he's been trying different things, but nothing tastes good.  This is a temporary side effect of the chemo.  The other annoying side effect is a hyper-sensitivity to smells. 

We have good news to share - as of 4pm today, Larry is taking only one medication and it is something he was taking before this mess started.  Woohoo - good job, Larry!

We're in the home stretch now - only three more days and Larry will be celebrating the end of treatment.  We are both looking forward to Friday at 2:30.  We should be on the way home shortly after.  Even though Larry will be done with treatment this week, he will need to come back for regular check-ups.  We don't know the schedule yet.

Pat

Home for the Weekend

We're home until Monday morning.  Larry's feeling pretty yucky - nauseous and tired.  They sent us home with a couple prescriptions for nausea - hope they work.

Not much to say - it was an uneventful week in Cleveland.

A Boring Report

Nausea started last night, but medications are helping.  They will be giving Larry nausea medicine around the clock to try to stay ahead of the nausea.  Until now, he got it only when he asked for it.

It's not surprising that his appetite has disappeared.  He was able to eat meatloaf and mashed potatoes on Monday when he still felt pretty good.

Other than that, there is really nothing to report.  In this case, a boring report is a good thing.

Pat

Back in Cleveland

Larry checked into the hospital this morning and has started chemo / radiation treatment.  In-patient this week; out patient next week (radiation only).  He's hooked up to the same green and brown IV bags that he had before.  He had such a great response the first time, so no changes were made.  Chemo infusion is 24 hours a day and radiation is twice per day.


Larry's roommate, George, also has esophageal cancer.  He is starting his first treatment today with surgery sometime in the near future.  He has many questions for Larry.

Pat

Menu Please!

Larry and I were in Cleveland today for several appointments.  The first appointment was "the scope" - a camera down the throat to check the internal healing.  We were told everything looked good and more details would be provided at an afternoon appointment in the surgeon's office.  Other appointments were preparation for chemo/radiation treatment next week.  The last appointment of the day was with the surgeon's assistant. 

Permission was granted to start weaning off the feeding tube and start eating "real" food.  WOOOHOOO!!  The process takes 2 weeks to build up to a full diet.  The first three days are clear liquids in small quantities - not what I would call "real" food, but it's a start.  One ounce of clear liquid 6-8 times per day and he's supposed to sip slowly to make it last 30-60 minutes.  How do you possibly make one ounce of liquid last 30 minutes?  Since we got home Larry has enjoyed a very small amount of jello and chicken broth.  YUMMY!  Day 4-6 introduces pudding, yogurt and mashed potatoes.  Starting day 7, solid foods can start.  By the end of the two weeks, Larry should be taking in all calories by mouth and will be able to disconnect from the feeding tube.  The tube will not be removed until 2-3 weeks after that - docs want to make sure Larry is eating enough and having no complications before they take it out.

It was another day of good news!  We are grateful for the continued forward progress.

Pat

Cheers!

*~* Outstanding *~* Tremendous *~* Remarkable *~*

Outstanding, tremendous, remarkable, fantastic, above average - these are the words spoken by the radiation oncologist at Larry's appointment today.  (There were other words/phrases, but he was talking so fast that I didn't get them all.)  The appointment was for radiation planning and mapping in preparation for the next (last) round of radiation scheduled to start May 2.  They call this one the "insurance round".  This was the first time we had seen this doc since before surgery.  He was VERY EXCITED about Larry's progress.  He knew we had gotten the pathology results a few weeks ago, but he wanted to share his excitement and to make sure we understood that this was very good news.

Our next visit is April 29 with both oncologists and the surgeon.  Larry will check into the hospital May 2 and will stay for 5 days.  Home for the weekend then back for outpatient treatment May 9 for 5 days. 

Larry is feeling stronger everyday.  He got out Sunday to watch Stephen's friend Nick play wheelchair football against the UT football team.  It was good to see him out and about.  Fatigue is still a big issue, so any outing takes alot out of him.  Every "big" activity is followed by a long nap.

The popsicles have been purchased - ready for the Popsicle Palooza on Friday!

Pat

A Drive and a Walk

Larry was able to get behind the wheel of his van yesterday with no issues - just a quick trip to the mechanic for my van.

I went out to get the mail today and came in to tell Larry it was nice out and he ought to get out for a walk.  It was music to my ears when he said YES!  We walked Buddy almost to the end of the cul de sac and back (past 10 of the 15 houses).  Go Larry! 

One month from today, Larry will be ringing the bell marking the end of treatment!  There have been times when I wasn't sure we would make it this far, but now I'm confident that Larry's got the upper hand in this battle.

Thank you all for your continued prayers and support.

Pat

Counting Down

Larry continues to improve.  There is still some pain from the surgery - doctors say there will be pain for several weeks.  He's been out of the house a few times - to Cleveland last week, a quick trip to the bank, and Sunday to visit his parents.  He's also able to sleep in bed for a few hours each night - using a foam wedge to keep his head and chest elevated (supposed to be on a 30 degree incline). 

We've become quite adept at administering medication through the feeding tube.  Larry is never hungry, but he really misses the tastes and textures of food.

Larry has been grounded from driving until now - he'll give it a try later this week.

Counting down the 22nd - POPSICLE DAY!!!!  He's requested orange for the first one.

News from Cleveland

The Monday appointments went well.  The oncologist greeted Larry with "Wow, you look great!"  Both the oncologist and surgeon are pleased with how Larry's recovery is progressing.  They gave us dates for the next phase:

• April 22 - half of a popsicle 3 times per day (nothing else to eat or drink)
• April 29 - radiation planning (there will be another radiation planning appt earlier in the week)
• April 29 - endoscopy (sending a camera down the throat to inspect the work on the esophagus / stomach)
• May 2-6 - in-patient chemo / radiation
• May 9-13 - out-patient radiation
• May 13 - DONE WITH ALL TREATMENTS

The endoscopy will determine when Larry can start eating / drinking.  Once he gets the green light, it will be a two week process to build up to "real" food.  He probably won't feel like eating much during chemo / radiation, so weaning process will likely go through the end of May.

The oncologist shared the good news about the pathology report.  The long term prognosis is much improved because the pathology report shows that the staging changed from stage III before treatment to stage I at time of surgery.  Patients with good response to treatment do much better long-term.

It was a very good trip!

Pat

Progress Continues

Larry continues to get stronger each day.  Tomorrow is the trip to Cleveland for follow-up appointments with the surgeon and oncologist.  We are hoping to get a schedule for the next round of chemo / radiation and an idea when Larry can start eating.  It's been three weeks since he has had any food or liquid by mouth - he's not really hungry, but he misses the tastes.  We hear that the surgeon will offer a popsicle when the time is right.

I'll publish an update Monday evening with news from Cleveland.

I've added a new feature to the blog.  On the right, above the family photo, you'll see a box labeled "E-MAIL NOTIFICATION".  If you want e-mail notification when new posts are published to the blog, enter your e-mail address in the box and then type the security code that is displayed.  You'll get a verification e-mail - once you respond to the e-mail the updates will be sent.  I did a test the other day and the notification came 18 hours after I published a post. I thought some of you may prefer this over remembering to check the blog.

Pat

Visitors Welcome!

Larry is ready for visitors!

Please call before you come over to make sure it's a good time.

Pat 

Baby Steps

Larry continues to make small improvements each day.  He spends all day and all night in his recliner - the best place for him since he is supposed to keep his head and chest elevated.  I spent the first couple nights on the couch in the next room.  Stephen and Mike found a buzzer from one of their board games - Larry uses it to call me in the middle of the night - works great!  So, now I've moved to the bedroom.

My goal is to get him up more often to walk around the house and to start reducing the amount of pain medication he is taking.  His goal is to be able to go to church next weekend!

Yesterday, I picked up the dog (Buddy) from the kennel and took him to the groomer for a good bath.  He was so happy to see us when he finally got home. 

Things are slowly returning to "normal" or as normal as they can be for now.  Although, Mike, Stephen and I are struggling with eating - we feel guilty eating when Larry cannot.  It will be several weeks before Larry can start drinking and eating.  The hospital coached us on how to start introducing liquids and solids - a two week process before he will be completely weaned from the feeding tube.  Looking forward to the day the doctor gives us the OK to start the process.

The first follow-up appointment with the surgeon and oncologist is April 4.  At that appointment, I expect Larry to be scheduled for the "scope" a few weeks later.  They will send a camera down his throat (while he is heavily sedated) to check that everything is healing properly.  The results will determine when Larry can start drinking/eating.

Thank you all for your continued prayers, support, cards, calls, e-mails, blog comments, etc.  Much appreciated.

Pat

Getting Settled

Yesterday was exhausting for both Larry and me.  The drive home was uneventful.  We met Larry's brother at the halfway point - the hospital strongly urged him to get out and walk at least once on the way home and I asked Larry's brother to meet us to help Larry out of the van.  The other suggestion made by the hospital was that Larry ride in the back seat for at least a week - front seat airbag deployment could cause problems.

While we were in transit, the medical supply company called to confirm delivery.  My dad and Stephen were at the house to accept delivery of boxes and boxes of supplies.

We got home and got Larry settled into his chair and 30 minutes later the visiting nurse came to the house.  She made her assessment and watched me set-up and start the feeding pump.  She spent about 45 minutes at the house - Larry slept through most of it!  She or another nurse will visit twice per week for 3 weeks.

The boys helped me get the car unloaded. Our living room was a sea of luggage and medical supplies!  Where to begin?

Mike told me that his ear started hurting after school yesterday.  It got worse through the evening.  At 9:30, I took him over to Flower ER to confirm an ear infection and prescribe antibiotic.  After a drive across town to a 24 hour pharmacy, we were back home by midnight.  He's much better today - mostly because of the medicine but partly because he got a day off from school!  I put him to work helping me get things put away.

Larry is feeling better today.  Still in a lot of pain, but it seems to be better than yesterday.  A nurse from Cleveland Clinic called today to help me with a medication schedule.  That was a huge help.

My mom came over this afternoon to help - not everything is in it's place, but we're getting there.  THANKS, MOM!

Pat

HOME !!!

We're home and happy to be here.  Busy getting settled in.  More later.

Ready for Discharge

Larry had a good night and is ready to head home.  I'm checked out of Hope Lodge.  Were in the hospital room waiting for discharge instructions and any remaining training required for home care. 

Pete and Laurie visited yesterday afternoon.  While they were in the room, the surgeon walked in.  He recognized Pete after 5 years!  Amazing memory.  Good to see Laurie and Pete - our wonderful angels.

Dave, a college buddy, stopped by shortly after Pete and Laurie left.  The guys had fun reminiscing about their college days.

Yesterday was also a heavy mail day - 12 cards delivered!  Thanks to all.

Nurse Tom (our favorite) just stopped in.  He wants Larry to have a last dose of painkiller for the ride home - so noon is the time.  Looking forward to getting home.

Pat

Jerry & Shirley

We join the staff in mourning the loss of Jerry, the patient down the hall who had the same surgery four days before Larry.  Jerry died this morning from complications from a previous surgery.  He had surgery yesterday to repair the issue and did well overnight in ICU.  Details from this morning are confidential and were not shared with us.

I walked past his room several times this morning to see if he was back in the room.  When I saw an unfamiliar family member packing his things, I had a bad feeling.  I asked a nurse if Jerry was coming back to the floor - she directed me to the front desk.  I knew. 

Shortly after that, Shirley stopped by to share the sad news.  What a strong woman.  Just hours after Jerry's passing, she wanted to see Larry to wish him well in his recovery.  Jerry was such a cheerleader for Larry, encouraging him to get out in the hall to walk.  And Shirley was such a comfort - we shared many hugs. 

Pat

Praise God!

Pathology report came back and the news is very good.  All lymph nodes are clean and the margins are clear (meaning that all cancer was removed).  Based on the findings, staging has changed to Stage I .  There are many other words in the report that we don't understand - but it was very clear that the surgeon was very pleased and glad to deliver the good news. 

What a wonderful anniversary gift - 25 years today!

Pain is still pretty intense, but better than yesterday.  We'll get him up for a walk soon.

Still planning on noon discharge tomorrow.  But we will be going straight home from the hospital.  Logistics of staying in town were difficult - delivery of supplies and home nurse.  It will be so nice to be back home.

Pat

Pain and a New View

One of the things removed today was the epidural (an IV in the mid-back that created a band of numbness around the mid-section).  A couple hours later the pain started - the first real pain from surgical site.  He's been miserable all day.  The pain management team added one more medication (total of 4 meds for pain) - once that kicks in, they think he'll get relief.  The hospital staff is working very hard to control the pain - they know he will be more mobile when there is less pain and mobility is so important for recovery.

The only walk he got in after the pain started was a walk to his new room.  We're not sure why we were moved when we plan on leaving soon, but we had no choice.  The room has a better view, but it was a very slow walk getting Larry down the hall.  Another bonus, the new room is at the end of the hall so should be much quieter. 

Tube Count

The tube count is down significantly today.  Four tubes removed this morning and another scheduled for later today.  The most annoying tube was the first removed - the NG tube that went in the nose and down the back of the throat.  It really restricted his movement.  By the end of the day, he'll be left with the feeding tube, one small drain tube, an IV going into the central port, and the heart monitor.

I've lost my job administering medication through the feeding tube.  Not because I did anything wrong but because they want Larry to learn how to do it.  His first training was this morning - he did great.

Target discharge day is Wednesday - post-op day 9 - FANTASTIC!!  We plan to stay in town Wednesday night and head home Thursday after rush hour. 

Larry enjoyed visits from his family on Saturday and from my parents, Mike and Stephen yesterday.  The boys were able to escort him on one of his walks.

To answer questions from Dave and Pete -

• Yes - Larry has been watching NCAA basketball
• Lap - 170 steps for me - so maybe 350 feet

Pat

Steady Progress

Larry continues to make steady progress.  He did 2 laps on his morning walk and 1 lap for the mid-afternoon walk.  Planning another walk before the shift change at 7:00. 

One big tube removed today.  Monday at least two more will be removed.  Lungs are clearing up.  Everything is moving in the right direction.

If progress continues at this rate, then Larry could be discharged as early as Wednesday! 

Pat

1st Full Lap!!!

Not much sleep last night, so Larry's pretty tired this morning.  Tube count remains the same.  He may lose one of the chest drains tomorrow and may lose the oxygen later today, but I think Monday will be the big day for tube removal.  That's the day the most annoying tube comes out - the NG tube that is in his nose.

Still some fluid in the lungs - so aggressive respiratory therapy continues.  Pain seems to be well managed - I'm getting pretty good at giving meds through the feeding tube.

The best news - Larry needed less help getting up for a walk and once he got out in the hall he moved with more speed and confidence.  He made a full lap around the floor.  GREAT JOB LARRY!!!!  Goal is five more good walks today. 

Larry's family is coming to visit today and my parents are coming with Stephen and Mike tomorrow.

Looks like we're in for a good day! 

Pat

Two Steps Forward - One Step Back

Not such a good day today.  I was here at 7:30 - Larry was sleeping as expected.  The nurse helped get him to his chair, but he continued to sleep.  Seemed too sleepy and not as alert as yesterday.  This went on all morning.  Adjustments were made in the pain medications and by mid-afternoon he was feeling better.

Pete and Laurie stopped in when Larry was feeling pretty bad - perfect timing to give me a much needed hug and wipe away a few tears.  While they were here, I introduced them to Jerry down the hall who had the same surgery last Thursday.  Sounds like they got along great and are planning an esophagectomy reunion later this summer after Larry and Jerry recover!  By the time Pete and Laurie stopped by the room again, Larry was feeling better.

Larry got out of the room for a short walk around 6:30 and will get another short walk at 9:30.  Sounds great, but the goal is 6 walks per day with each one being a "lap" around the ward (past 25 rooms).  So much progress to be made.

No tubes removed today.  Hoping to get rid of the annoying NG tube sometime during the weekend.

Thanks for your continued prayers for healing.

Pat

Nurse Pat

Wow - so much has happened in the past 24+ hours - almost all good. 

• Larry was moved from ICU to the step-down unit yesterday at 11:00 am (moved by my buddy Prentis the hugger)
• See my earlier post (2 down I think) for the mailing address
• Several tubes have been removed - I think we're down to 10 (from 18)
• Biggest risk now is pneumonia - so many visits from respiratory therapy and encouraged use of the "pickle" device
• Dr. Rice (surgeon) introduced us to Jerry down the hall - he had the same surgery 4 days before Larry - he's up and walking the halls
• Two physical therapists were here early this afternoon to assess Larry and get him up and walking; first walk - 35-40 feet - Larry could have done more, but they didn't want him to over do it; goal is to eventually take 6 walks every day
• PTs will try to get back today to get Larry walking again (I promised them some NCAA basketball when they came back)
• Dr. Adelstein (oncologist) visited and said surgery went well; they are waiting for pathology results from the surgery; won't be available until next week
• Feeding tube is now being used for feeding (was being used for drainage then saline)
• I am being trained to administer medication through the feeding tube - showed me twice, then had me do it once.  Pump off, clamp, remove tube, unclamp, flush, meds, flush, clamp, replace tube, unclamp, pump on.  I think I've got it.  They will have me administering medications from now on.  Just call me Nurse Pat!

I've been here since early morning - the day has flown by - feels like it's been only a couple hours.  Larry's pain seems to be better.  He's awake more through the day (even though he got very little sleep last night).  Every day is a better day. 

A case manager was in to talk about home care.  Does anyone have experience with any Toledo-area home nursing agencies?  If you can recommend any please post a comment or send me an e-mail to larryandpat@bex.net. 

Thanks!
Pat

Two Views

The view from Larry's room.

The view from my room.

Mailing Address

Cards can be sent to Larry at this address:

J5-2 Bed 05
Thoracic Surgery Stepdown
9500 Euclid Ave / J5-2
Cleveland OH  44195

Any cards received after he is discharged will be returned to sender.  Typical stay is 10 to 14 days, so we'll be here for at least 7 more days.

Pat

Moving Day!!!

Larry is sitting up in a chair this morning!!!!!  And watching TV.  The nurse said he had a good night.  He says he didn't sleep well.  The thoracic team did their rounds today and were pleased with his progress.  Dressings were removed from his two incisions - one in the neck (~3-4") and one in the abdomen (~14").  No stitches - everything is glued together.

They will be moving Larry to the step-down unit later today!!!!!  No more ICU after today.  That also means less laying around and more getting up and moving.

Yesterday, one of the staff in the ICU unit caught me tearing up as I left - his name is Prentis.  He gave me a big hug and some words of encouragement.  I saw him today and asked for my morning hug - he happily delivered with more words of encouragement.  Very nice.  Larry has had the same day nurse yesterday and today - Caitlin.  Also very nice.  Kudos to the great staff here.

Today is moving day for me also.  I'm checking out of the hotel and moving to the Hope Lodge.

Pat

Tubes Everywhere

So, the sitting up thing didn't work out.  They got him on his feet and his blood pressure started to drop.  Back to bed.  This is not really a setback for what he's been through.  They will increase his fluids and try again tomorrow.

Before surgery, Larry asked me to take a picture of him in ICU while he was hooked up to the maximum number of tubes.  Sorry, Larry - no photos allowed.  So instead, on my last visit, I worked on a tube count.  Counting the 2 that have been removed, he had 18 tubes/wires pumping things in, draining things out or monitoring vital signs.

We will celebrate the removal of every one of them - so let's hear a belated HOORAY for the removal of the ventilator and one IV line.  Two down, 16 to go!

Pat

Sitting Up

Larry has been making steady progress all day.  For all he's been through, he looks pretty good.  Pain management seems to be better.  Respiratory therapy has been working with him.  With every visit he seems more alert.  He has recognized all visitors today, he knows that surgery went well, just confusion about what day it is.  I've been limiting my visits to just a few minutes every hour.  I want to give him every chance to sleep.  The nurse was planning on getting him up in a chair at 5:00.  She said it would take some time to get him situated with all the tubes.  I'm heading down there now to check his status.  The fact that they are getting him out of bed less than 24 hours after surgery is excellent progress.

Bill & Kelly (Larry's brother and niece) left for Chicago around noon today.  That left Mike, Stephen and I to spend some time together.  We hung out in the ICU waiting room, visiting Larry periodically.  Dave & Carol (Larry's other brother) arrived this afternoon.  After a short visit with Larry, they took the boys home.  They plan to stop in Huron for pizza.

After everyone left, I asked the concierge where to find the most comfortable lounge.  He sent me to the rooftop pavilion.  So here I am looking out toward downtown Cleveland.  I was up here yesterday for a few minutes while waiting for surgery.  See photo below from yesterday when the weather was better.  So the rooftop was quiet and relaxing until a yoga group started right next to me.  I am hearing things like "downward dog," "triangle," "cobra," "table," and "warrior."  Clearly, I'm not familiar with anything yoga related.  At least they have good background music - The Beatles.


This will be my last post of the day, unless there is significant news to share.  I'm expecting that after sitting up, he'll just want to sleep and the night will be quiet (as quiet as a hospital can be) and uneventful night.

Pat

Quiet Night - Good Morning

We got to see Larry at 10:30 last night after they got him settled into the ICU after surgery.  It was hard to see him on the ventilator, but other than that, he looked better than I expected.  After we all saw him we all went back to the hotel. 

I called to check on Larry at 3:30 am - I was happy to receive a boring report - "doing well - no changes".

Morning visitation doesn't start until 8:30.  I called at 8:00 (after shift change) - GREAT NEWS - they were working on taking him off the ventilator!  This can take some time while they wake him up - check blood oxygen - all to ensure he can breathe on his own.  By 9:00, I was able to go back to see him.

One tube down - many still attached.  He's very groggy, but I was able to tell him the surgery went well and that the family was able to see him last night.  Pain is an issue right now - they are working on getting the right balance of pain medication. 

Some of the family went home last night or early this morning.  As I write this, I'm here with Stephen, Mike, Larry's brother and our niece.  Later today another brother will be here to visit and take the boys home.  I'll be staying at the hotel across the street until Larry is out of ICU, then I'll move down the road to the Hope Lodge.

I feel so blessed to have you all supporting and praying for Larry.  I feel wrapped in a blanket of love!

We give God thanks and praise.

Pat

OUT OF SURGERY!!!!!

Larry is out of surgery and in the intensive care unit.  We are waiting for his nurse to take us back to see him (2 at a time for just a few minutes).  The surgeon said everything went as expected.  How long Larry stays in ICU will depend on how he recovers over the next few days.  Once we all get a quick visit with Larry, we'll call it a night and go back to the hotel.  We can't come back in the morning until 8:30.  I'll post an update after I see him in the morning.

Prayers have been answered.  Continued prayers for a good recovery.  Thank you all for your prayers.

Pat

5:15 Update

Got the page - surgery is underway.  Could be 4-6 hours before we hear more.

Pat

5:00 Update

Latest update - even though they took Larry to the surgery floor at 1:00, he did not get into the OR until 3:15.  He is still being prepped.  I am waiting for the page that says "procedure started".  It's unclear how long the actual surgery will take.  The folks at the waiting room desk don't seem to know if the 6-8 hour estimated time was for the surgery itself or if it includes the few hours of prep time.  Will post again when I know more.

For now praying and waiting.

Pat

3:00 Update

Larry was taken up to surgery at 1:00, he was in good spirits when they wheeled him away.  Many tears from the other 14 of us.  No updates from the surgery floor, but I don't expect any yet.  No news is good news. 

My lost backpack was delivered at 1:00 - thank you Diane!  Now I can upload a few photos.

Larry, Stephen and Mike with one of their wins.

Larry and Family

Jamie (4th Angel Coordintor), Laurie andPete

Delays...

We're here at the hospital in the surgical waiting room doing what it was meant for WAITING.  They told us to be here at 8:00 for 9:00 surgery.  Shortly after we arrived, it was delayed from 8:00 to 10:00, then to 11:00.  We have our own little room of the larger waiting room - seats for all of us and a huge TV on the wall.  There are 14 of us here to support Larry - we are surrounded by LOVE!

To prep for surgery, Larry had to go on a liquid diet starting Saturday.  He won't have solid food for 6-8 weeks.  For his "last meal" he chose steak at Outback Steakhouse.  We went to mass at St. Joe's on Saturday and service at Sylvania UCC on Sunday.  After service, my parents joined us for a private prayer offered by our Senior and Associate pastors.  Very comforting - many thanks to Bill and Luke!

We headed for Cleveland early Sunday afternoon and stopped at Dave & Busters on the way.  For those who don't know, it's an arcade / restaurant.  We all had fun.  Stephen and Mike won a few jackpots and cashed in their winnings for loads of candy!  Pixie Stix, Nerd Ropes, Fun Dip.  They'll be on a sugar high all day.

We arrived at the hotel at 5:30 where we met Larry's family - his parents, 4 siblings and their spouses, and two nieces.  We hung out in one of the rooms playing games and talking.  Now here we are WAITING.

Also with is our angel Pete and his wife Laurie.  Jamie stopped by to introduce herself - she is the coordinator of the 4th Angel program.  It was nice to put a face with the name.

I will be posting photos later today - not possible now because of a small mishap.  The backpack with my netbook (that has a camera card slot) was left at home.  My parents found it this morning and gave it to their neighbor who happens to be coming to Cleveland Clinic today for an appointment.  Weird how that all worked out.  Thanks Mom & Dad and Diane D.

I'll post again when Larry actually gets in for surgery.  It sounds like we won't get many updates.  So you may see a post that says surgery started then another several hours later when Larry is out of surgery.

Thank you all for you love, support and prayers. 

Pat

More good news!

The good news continued today:

• EKG - looks good
• Chest x-ray - looks good
• Blood work - looks good
• CT scan - shows that the cancer HAS NOT SPREAD
• Oncologist visit - everything looks good - released for surgery
• Anesthesiology visit - everything looks good - OK'd for surgery
• Surgeon visit - everything looks good - ready for surgery

The cancer is now considered Stage II (instead of Stage III).

The surgeon's office did a nice job reviewing the surgery and what to expect after.  Larry will be in ICU for 24-48 hours, then moved to a private room.  Total hospital stay is expected to be 10-14 days.  Then home for recuperation.  Four to eight weeks after surgery, Larry will go back for a second round of chemo and radiation. 

Surgery is scheduled for Monday, March 14.  We won't know the time until Sunday evening. 

Pat

Fantastic News!!!!!

We're in Cleveland for pre-surgery testing.  Today Larry had two tests:  pulmonary function test and EGD/EUS.  The pulmonary function test checked the strength of his lungs.  He tested better than in January - probably due to his current status as a "non-smoker".  For the EGD/EUS Larry was given a strong sedative to knock him out.  They sent a camera down his esophagus to check the status of the tumor.  Great news - it is now half the size it was when diagnosed in December.  WOOOOHOOOO!!  There is no sign that it has spread beyond the esophagus. 

Tomorrow we have ten appointments:  CT scan, EKG, blood work, oncologist, surgeon, anesthesiologist, etc.  CT scan will validate that the cancer has not spread.  It will be a long day and we are hoping the news continues to be as good as the news from today.

We had a lovely dinner with our angel Pete and his wife, Laurie.  It was nice to be able to get to know them a little better and to talk about what to expect next week.  Little Italy was a great suggestion, Pete!

Look for an update after the appointments tomorrow.

Pat

Family Fried Fun!

Today, we met Larry's family for a fish fry hosted by Larry's brother Dave and wife Carol.  Brother-in-law Harry provided all the fish - blue gill.  It was a feast of fried foods:  fish, potatoes, sweet potatoes, pickles, onions, mushrooms, hush puppies.  All was delicious.  We even tried to deep fry oreos and snickers!  Thanks to the hosts Dave & Carol and the chefs Dave, Harry and Tim.  It was great to have so many family members there with us.

Larry is feeling OK - still tires easily - working on gaining strength for the big surgery in two weeks.

Pat

Fairly Good Day

Larry is feeling better today.  Nausea and pain in his gut are almost completely gone.  Things are tasting a little off and some strong smells bother him.  Overall, feeling better than he has felt for many days.  We also got him out of the house to the mall tonight to walk (and for dinner at Olga's).

The good feeling may be helped by the fact that WE MADE OUR FINAL MORTGAGE PAYMENT TODAY!!!!!  WoooHoooo!!!

From previous post:

• 3/7&8 to Cleveland for pre-surgery testing
• 3/14 to Cleveland for surgery (10-20 day stay)

Pat

Surgery Scheduled

Larry and I made another trip to Cleveland today for a visit with the medical oncologist (chemo doc).  Blood was drawn - all counts look good.  Surgery has been scheduled for Monday, March 14.  Next trip to Cleveland will be March 7 & 8 for pre-surgery testing. 

Larry's hasn't felt good all day.  He's got a pain in his abdomen - probably a result of the radiation.  The radiation oncologist said the radiation would keep cooking for a week or more - "just like a microwave oven". 

Pat

Family

Larry's brother Dave and wife Carol had us over for spaghetti dinner today.  After dinner we played a couple games of LCR (Left-Center-Right).  All of Larry's siblings were there except his brother and wife from Chicago and all of our nieces and nephew.  Very nice! 

Click here to see photos.

Home Sweet Home - Again!!!

We got home Friday at about 5pm.  Feels great to be home.  Overall, Larry did very well with the chemo / radiation treatments.  He still has fatigue and nausea at times, but all in all not as bad as many folks feel.  Docs say he will have good and bad days over the next few weeks.  Should be feeling pretty good by surgery time.  We'll go back Wednesday for a check of blood counts and visit with chemo doc.  Then we should have a couple weeks with no visits.  In early March, pre-surgery testing will start.  Not sure what all will be involved, but hoping it can be done in one day.  Looks like surgery will be mid-March.  Stay tuned.

Many thanks to my Owens Corning friends who are sending us dinner tonight from City Q, our favorite barbecue restaurant.  Yum.

Pat

Visited by an Angel

We had a very pleasant surprise today.  Larry's mentor from the "4th Angel" program called to say he'd like to meet us.  (If you don't know about the "4th Angel" program, see my post from January 25 titled "Touched by an Angel".)

Pete and his wife Laurie were at Cleveland Clinic today for Pete's five-year follow-up.  They met us in the lobby of the radiation oncology floor.  As luck would have it, another couple was sitting nearby and the husband (Chuck) was also recovering from esophageal cancer.  Pete went through treatment and surgery five years ago and is feeling great.  Chuck had surgery 8 weeks ago and was at the clinic for a planning session for his post-op treatment.  He says he's feeling about 80% of normal (of course that will change next week as he goes through round 2 of chemotherapy).  Both had the same surgeon and same treatment plans, but different oncologists were involved in each case.

It was great to hear the experiences of Pete, Laurie, Chuck and his wife.  And to hear how quickly they both recovered from this major surgery.  We had many questions and they were answered.

A BIG THANK YOU TO PETE AND LAURIE AND TO SCOTT HAMILTON AND COORDINATOR JAMIE WHO BROUGHT US TOGETHER!!!!!

Here's a photo of Larry with Pete and Laurie. 

Pat

Unique Building

When we had the boys here a couple weeks ago, Stephen caught a glimpse of this building that is just down the street from the Hope Lodge.  We got a closer look today.  It is the Peter Lewis Building on the campus of Case Western Reserve.  It houses the School of Management.

And, yes it's cold here.  The last photos are the huge icicles at the lodge.

A Better Day

Today was a very good day.  Less nausea, more energy, better appetite.  I brought plenty of food, but we ended up at KFC for lunch and Taco Bell for dinner.  Nothing I brought sounded good to Larry.  No issues here - no cooking or cleaning required from me!  We thought about going to a movie, but thought we might fall asleep before it was over.  So we came back to the lodge and watched American Idol.

We had a good meeting with the radiation oncologist.  We'll see him again on Friday then one more time prior to surgery.  He says Larry is tolerating treatment very well.

Another good meeting with the medical oncologist (chemo).  He also says that Larry is tolerating treatment very well.  Lab work looked good.  We'll see him next week for another look at lab work, then a couple times before surgery.  If all is well, then he will work with the surgeon to schedule surgery.  It's looking like mid-March.  We still need to watch for fever and to be cautious in public.  Extra hand washing, etc.  Fever > 100.4 will require immediate trip to the ER and admission for IV antibiotics. 

Did we tell you that Larry gained 15 pounds last week - they pumped so much fluid into him.  Well, as of today, all 15 pounds are gone and a few extras too.  Now that his appetite is improving, we'll have to watch the diet.  Surgeon is looking 5 pound loss every week until surgery.

We've met a few folks here at the lodge.  A couple checked in last night - from Hawaii!  They have been in town for treatment since November - not sure where they've been staying.  Another man is taking part in a one-year clinical trial.  He's been here for a few months and will be staying for several more.  Some are here for just a week or two and others are staying much longer.  The facility is very nice and they do a lot to make it feel like home away from home.  Still, it will be good to be home Friday evening.  Two more days!

Pat

Uneventful Couple Days

Larry's got 4 of 10 radiation treatments completed for the week.  Wednesday is "doctor day".  Two  radiation treatments, blood work, visits with the two oncologists.  They will be paying close attention to his white blood counts - if too low he will be at increased risk for infection.

Slight nausea - no energy - generally feeling "blah".

Thank you to Erin and all in Lightspeed Panel Ops for the Zen garden arrangement that was delivered on Saturday.  It was a very pleasant and much appreciated surprise.  It's nice to know that you are thinking of us.

Pat

Mike's Basketball Championship Game

Mike's team won the 6th grade basketball championship today!!!! Way to go, boys! They were 2nd of 6 teams at the end of the season. Got a bye in playoff round 1. Won round 2 by 2 points. Championship today - down by 1 at the end of the game, but ref called a foul that put Jackson on the foul line for 2 shots - no one else on the court. The game was all on his shoulders. Missed the first shot, made the second to tie. Whew! that was close. Overtime and Mike's team ended up winning by 6. Coach is treating the boys to dinner Monday night. Congrats to Mike and his team!

Oh - Larry's feeling pretty good.  He made it to both games!  Great weekend so far and we still have the Super Bowl to watch.

Home Sweet Home!!!

We're home!!!!!  And feeling pretty good.

There was some trouble with the IV very early this morning.  At 3 am the nurse came in to add new chemo bags.  Larry noticed that there had been a leak.  Apparently a problem with the IV.  It took 2.5 hours, 3 nurses, 5 needle pokes, a bit of digging around to get the new IV started.  Not much sleep for Larry.  My Friday was spent watching Larry sleep! I guess he got caught up, because by the time we got on the road, Larry was feeling pretty good.

There may be some delayed side effects from the chemo, but so far so good.

We're settled in at home for the weekend.  Larry asked for a later appointment on Monday - they obliged.  So we'll be watching the Super Bowl with Stephen & Mike.  Then back to Cleveland Monday morning.

Here's sight we were happy to see - empty chemo bags and an IV pole without Larry attached!

One More Day

It's the end of Day 4, one more day.  We're both looking forward to heading home for the weekend.  The chemo doc is pleased with how well Larry is tolerating the chemo treatment.  Larry might disagree.  He has slight nausea a couple times a day - quickly relieved with medication.  His back is still sore - best relief will come from the chair and bed waiting at home.  Not much of an appetite and generally feeling "blah".  He's not getting much good sleep at night - chemo bags changed at 2am then blood draw at 4am.  Blood counts are looking good so far, but counts generally drop to the lowest level the week after chemo.  They'll be checking blood a few times next week.  If white counts go too low, they may want an extended stay.

I'm hoping that Larry rebounds with some comfortable rest at home.  Next week should be much better - no IV pole to tote around and we'll be hanging out together at the Hope Lodge.

I went down to the cafeteria for lunch today and on my way back I heard drumming coming from the main lobby of the new building (the curved building from yesterday's photo).  I went to check it out.  Drumming, cymbals and a dancing creature.  It was a celebration of the Chinese New Year.  Two people were under the creature costume that was covered in gold.  Sorry, didn't have my camera.  Nice celebration, but totallly unexpected in a hospital setting.  I just Googled and found that 2011 is the Year of the Rabbit and 2010 was the Year of the Tiger.  The creature must have been the exiting tiger - definitely not a rabbit.

Sandra Lung - Happy New Year AND Happy Birthday!!!!  Have they ever before fallen on the same day?

Pat

A Few Photos

It's the morning of day three.  A bit of nausea and a back ache.  The back ache is not from chemo but from sleeping and sitting on unfamiliar furniture.  Larry is looking forward to going home Friday and sitting in his La-Z-Boy.


Follow this link for a few photos of Hope Lodge and Cleveland Clinic: Link to photos

Pat

Treatment - Day 2

I found 4-5 inches of snow on my van this morning.  Roads were snow covered but passable.  I got to the hospital in time for Larry's 7:30 appointment to find out that it was cancelled - the machine was down.  Radiation treatments are supposed to be 6 hours apart, but because of the machine malfunction, they doubled up on his 2:15 treatment.  That was the excitement for the day.  Otherwise pretty boring.  As I write this I'm lying in the hospital bed while Larry sits in the chair and tries every possible button on the bed.  Yes, he's bored!  Larry is still feeling pretty good.  A little nausea before lunch, but medication took care of it pretty quickly. 

That's all for now. 

(Dave - we liked the joke you posted this morning!)

Pat

Treatment - Day 1

We arrived in Cleveland Sunday night and stayed at the (un)Comfort Inn.  The only good thing to say about it is the price.  Fortunately, I got a room at the Hope Lodge for the next two weeks - free housing provided by the American Cancer Society.  Very nice.  I'm writing this while sitting in front of the fireplace watching TV. 

Larry is in a private room at the hospital.  He was in a double room for about 5 minutes - good thing he moved because there was no room for me in the first room.  Hospital food was pretty good today. 

The first day of chemo / radiation passed without incident.  Side effects will probably come later - as late as the 3rd week after start of treatment.  Hoping it won't be too bad.

I've added a photo of Larry with his IV pole.  He traded in his fanny pack for this monster!  It goes everywhere with him.  The green and brown are just bag colors, not the color of the fluids dripping in.  Each set of bags lasts 12 hours and total time on IV is 96 hours.  So, by noon on Friday, IVs will be removed and we can head home for the weekend by 3:00 (following afternoon radiation).  Then back to Cleveland Sunday evening for next week's twice a day radiation treatments.

Thanks to all for the cards, phone calls, texts, blog comments, Facebook messages, e-mails, hugs, and well-wishes.  An extra thanks to Jeff for the snow-blowing!  All are very much appreciated.

Pat

Final Pre-Treatment Visit

Today was our last pre-treatment visit to Cleveland Clinic.  We met with the medical oncologist (chemo doc), a nutritionist and had a simulation (practice) radiation treatment.  Everything is in order for next week. 

Stephen and Mike joined us today - they got to see the radiation machine and how they get Larry set-up on the table.  They also sat in on the session with the nutritionist.  We're all going to be making some changes in the way we eat. 

The fun begins at 8am Monday with the first actual radiation treatment.  Right after that, Larry will be admitted to the hospital and they will start the chemo IVs.  One drug will use the central port in his chest and the other will be a standard IV line in the arm.  He'll be free to walk around the hospital, but will have an IV pole to wheel around with him.

Stay tuned for updates next week.

Pat

Touched by an Angel - his name is Pete

We have been touched by an angel. His name is Pete and he is part of the “4th Angel” program at Cleveland Clinic.

The 4th Angel program matches volunteer mentors with newly diagnosed cancer patients. All volunteers are cancer survivors and have offered to mentor new patients through their journey. On Monday, I got a call from the coordinator indicating that she had found a "perfect" match for Larry (she was very excited about this match). His "angel" will be Pete who was diagnosed in 2005 with the same cancer, at the same stage, had the same treatment and surgery, with the same oncologists and surgeon. Because he is past the 5 year mark, he is considered "cured". I can't imagine finding a better match for Larry.

Pete called Larry last night and they had a lengthy chat about treatment and surgery. Pete lives in the Cleveland area and plans to visit Larry during his treatment next week. What an awesome gift! We are looking forward to meeting Pete and his wife Laurie.

A little more about the program…

http://www.clevelandclinic.org/cancer/scottcares/4thangel/about.asp

The 4th Angel Story

When diagnosed with cancer in 1997, Olympic figure skating champion Scott Hamilton identified three “angels” who helped him. His oncology physician was his first angel; his oncology nurse was his second angel; and his family and friends were the third. What he found missing, however, was a fourth angel – someone who had gone through the same experience and who understood what he was feeling. Someone, in short, who had “been there.” The 4th Angel Mentoring Program offers one-on-one, confidential outreach and support from someone who has successfully made the same journey you are about to begin – the journey towards recovery. This specially trained volunteer and cancer survivor – your 4th Angel – can offer comfort, reassurance, information, coping techniques and practical advice. Your 4th Angel or Caregiver Mentor, paired as closely as possible with respect to diagnosis, gender and age, understands what you are going through because he or she has traveled that same road. As your mentor and guide, your 4th Angel will call you to share healthful and positive strategies learned from his or her own experience – strategies that can help you cope.

Take care,

Pat

(larryandpat@bex.net)

Very Busy Week with a New Plan

So much has happened since my post of January 6.

Last week Larry had his first chemo treatment and became the proud owner of a navy blue man-purse. He did quite well with the chemo. Mild nausea was the only side effect and it was only in the morning and not every day. Not bad at all.

We had a quiet weekend – attended Mike's basketball game on Saturday and Larry's family visited on Sunday. Then the fun began!

• Monday and Tuesday – work
• Surgeon from Cleveland Clinic called on Tuesday – appointment scheduled for next day (unexpected!)
• Wednesday – traveled to Cleveland Clinic to see two oncologists and a surgeon that specializes in esophageal surgery (the one who spoke to us on Tuesday)
• Thursday – three appointments at home – chemo oncologist, family doctor and another surgeon
• Friday – Cleveland Clinic for testing and meeting with surgeon – all to determine whether Larry is fit for the difficult surgery (he is)

We feel that the Cleveland Clinic surgeon is the right surgeon for Larry as he does more of these surgeries in a week than anyone in Toledo does in a year. So we have committed to Cleveland Clinic for all medical care. The Clinic requires that all testing and treatments be done in Cleveland. They use a different chemo / radiation regimen, so we need to start over.

Chemo in Toledo has been stopped – Larry was happy to turn in the man-purse! Radiation was scheduled to start Thursday – it was postponed to next week, but will be canceled. We had a good conversation with the Toledo chemo oncologist – he agrees with our decision and will be happy to take us back for follow-up care.

So what's next? A couple more single day visits to Cleveland for radiation planning sessions. Then on January 31, Larry will begin a two week stay in Cleveland for aggressive chemo / radiation treatment. The first week will be inpatient chemo and radiation treatment. The second week will be outpatient and will be radiation only, but the radiation is twice daily so we need to stay locally. We have been offered free housing through the American Cancer Society. Our wallet says THANK YOU. We're hoping to come home on the weekend between treatment weeks but that will depend on how Larry feels.

After treatment, there will be a waiting period before surgery. We're guessing surgery will be in late March or early April. Following some weeks of recovery from surgery, Larry will repeat the two week chemo / radiation regimen that was done pre-surgery. The only dates we know for certain are the two weeks of treatment starting January 31. All other dates depend on how Larry's body reacts to the treatment and how quickly he can recover from treatment and surgery.

Thank you all for your continued support and prayers. Both will be needed over the next few months.

Pat

Many Thanks!

Larry and I want to thank you all for the comments, cards, e-mails, texts, hugs, visits and well wishes. It is comforting to know that so many folks are thinking of us and praying for Larry's health. Carol and Dave – thanks for stopping by with the lasagna dinner. It's on the menu for this weekend! Larry really appreciated the fresh sauerkraut rolls.  You make them just like Mom and Grandma!  Judy and Bill - thanks for the visit and the brownies!  The boys are enjoying the brownies and other treats.

Larry's feeling pretty good, but we've had a crazy week. Look for an update later today or over the weekend. We'll update you on what's been happening and the new plan.

Pat

First Chemo Treatment

Larry has successfully completed his first chemo treatment.  The 3.5 hour appointment consisted of blood draw, pre-meds (to prevent nausea), 1 hour IV drip of the drug Taxol, 1 hour IV drip of the drug Carboplatin and set-up and training for the 24 hour pump that will drip hourly doses of the third drug 5-FU.  So far, the only complaints - dry mouth and the bulky "European carry-all" / man purse / fanny pack that carries the pump and medication.  The man purse will be a 6 week 24x7 fashion accessory.

Earlier today, Larry was tattooed.  The radiation department marked him in three places to ensure they position him correctly for radiation each time.  Lots of planning, checking and computer modeling to get things set up to zap the tumor and avoid all other organs.

Pat 
(larryandpat@bex.net)