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.