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)

Spelling Bee

We made it home safely and in time for Mike's competition.  He sailed through round one with "penguin", but stumbled in round two with "sensibility".  We're proud of his efforts - 18th place.

We had an enjoyable visit this morning with Bill, Jolene, Emily and Max (Larry's brother and family).  Sorry you couldn't join us Kelly!

A couple funny stories from our trip:
- The windshield was covered with salt and the washer fluid was frozen (only 4 degrees).  So we tried pouring water on the back window - success - clean window and it didn't freeze.  So I took another bottle of water and poured it on the front window.  Before I could step away, Larry turned on the wipers.  I got a face full of cold dirty water!
- Mid-way through Indiana we got pulled over by a State Trooper (in a Mustang).  Going 80 in a 70 zone.  Thankfully, he gave us a warning.  Driving the speed limit the rest of the way sure seemed to take a long time.

Pat

Trek to Mayo Clinic

We made our trek to Mayo Clinic today to meet with a surgeon.  He spent a lot of time with us providing information about the surgery options and answering our questions.  This doctor knows the surgeon at Cleveland Clinic and says we would be in very good hands there.  Logistically, Cleveland Clinic is a better option.  I've been in contact with the surgeon at Cleveland.  I just need to fax Larry's records for review, then they will set up the appointment.  He also confirmed that the chemo regimen prescribed in Toledo is the same as what we would get at Mayo.  

We are driving toward home as I write this – stopping in Chicago for the night.  We'll start out early tomorrow to meet Larry's brother for breakfast.  Hoping to be in Sylvania in time to see Mike compete in the Spelling Bee at McCord Jr. High.

Pat

Devastating Diagnosis

During a routine procedure in early December, a mass was found in Larry’s esophagus.  After more tests, several doctor appointments and days of unbearable waiting, we got the final diagnosis on December 22.  Larry has been diagnosed with stage III esophageal cancer (T3N1M0 for those familiar with cancer terminology).  The cancer is confined to the esophagus and local lymph nodes are involved. 

The current plan of attack:  6 weeks of chemo / radiation treatment, 3-4 weeks of rest, then surgery to remove the affected portion of his esophagus.  Chemo treatments are expected to start the first week of January and radiation the following week.  Three drugs will be given for chemo – one will be a 24x7 drip via a pump carried around in a fanny pack.  The other two will require weekly visits to Toledo Clinic.  Radiation will be given Monday-Friday at Flower Hospital. 

We don’t know yet where we will go for surgery, but plan to meet with surgeons at Cleveland Clinic, University of Michigan and Mayo Clinic.  Mayo Clinic is scheduled for Tuesday, 1/4.  Others will be scheduled soon.

During the “chemo teach,” a nurse reviewed all the possible side effects.  Yes, Larry will probably lose his hair.  Good thing the boys got him a new Cowboys cap for Christmas!  All side effects are temporary, so the hair will grow back.

This has all happened so fast - I don't think that it has fully hit us yet.  We do know there will be many rough days ahead for Larry, so please keep him in your thoughts and prayers.

Pat