Services for Jayme

We just send Dad's obituary to the KC Star to be published in tomorrow's paper. As stated below, services will be this Friday, April 29 - visitation starting at 1pm & service at 2pm.

Jayme Findlay, 58, died April 25, 2011 at Menorah Medical Center, while in the loving embrace of his wife, after a 2-year battle with esophageal cancer. Jayme was born August 1, 1952 in Omaha, Nebraska. He attended Westside High School and graduated from Baker University in 1970. He was a loyal employee of Power Sales & Advertising for 18 years. He was preceded in death by his parents, Robert and Connie Findlay and brothers Tom and Dave.

Jayme leaves behind his wife of 25 years, Kay, and 4 adoring children, daughters Anna Heinritz (Adam), Ft. Lupton, CO, Caroline Findlay, NYC, and Grace Findlay, of the home, son Sam Findlay, Lawrence and 2 beloved granddaughters, Claire and Stella Heinritz. He is also survived by his brothers Bob Findlay, Lawrence, Scott Findlay, Omaha and Dan Findlay, Dalton, GA.

The family would like to express their sincere gratitude for the wonderful care Jayme received from Dr. Mark Myron and Dr. Rich Morgan. Jayme felt truly blessed to have both on his team.

Jayme had a mission in life and that was to make a real difference in the world. Mission accomplished.

Services for Jayme will be held on Friday, April 29 at Village Presbyterian Church in Prairie Village (6641 Mission Road). Visitation with the family will begin at 1pm followed by a celebration of his life at 2pm.

The family suggests contributions to Operation Breakthrough (3039 Troost, Kansas City, MO, www.operationbreakthrough.org) or American Cancer Society (P.O. Box 22718 Oklahoma City, OK 73123-1718, www.cancer.org).

Thank you for all of the outpouring of support - its been incredible to hear from everyone. Really shows just how much everyone loved and respected Dad.

On His Terms

It is with such great sadness that I (Caroline) am writing to tell our loyal blog followers that my dad died today at 2:15am. My mom was with him, laying by his side in the all-too-familiar hospital bed, as he took his last breath. He went out the way he wanted to - in peace, pain free and with as little machines running as possible. All four of us kids - Anna, Caroline, Sam & Grace - were together driving across Kansas to try and get back to say goodbye. But Dad went out on his own terms - he didn't want us to see him suffering. Mom asked us to pull over and gave us the incredibly tough news to hear. She was so sensitive, honest and poetic in re-living our dad's last moments. The fact that the four of us were together made the moment something that I'll never forget and brought us closer than I ever imagined possible. I will not hide the fact that I am heartbroken, feel completely empty and am struggling with losing my dad at the young age of 24 but he knows how much we all adored and truly idolized him as both a father and a person. He really was like no other. He raised four amazing children (if I do say so myself...) and he will now live on within us. Plus through his son-in-law Adam and beloved granddaughters Claire Renee & Stella Jean.

Mom has been our rock and a saint throughout this entire 2+ year ordeal. She has never wavered in her care for him and always made him the #1 priority, even when he wasn't being the most pleasant person to be around. She draws strength from us but we lean on her even more. I have never been more in awe of someone - she is our guide through life. Words cannot express the love I feel for her. I know my siblings fully agree.

Our Aunt Jane and Mom's cousin Amy Jo were with her through it all yesterday. We are forever grateful she had them both there. And his nurse, Wendy, even kissed Dad's head and cried while sharing in the grief of it all.

I want to thank everyone for their words of encouragement and support for our family. It has been quite a journey that feels strange to end this way, but I'm beyond relieved to know that Dad no longer has to deal with the never-ending flow of medication, hospital visits and the unknown of tomorrow.

We will keep you posted on service information. Love to you all.

Still Here

Currently on day #4 at Menorah. They are still working on managing Jayme's pain and nausea, though both are improved. I asked the Dr this morning what the criteria would be for Jayme to go home. He said it was pain and nausea control and figuring out how to keep him nourished after he leaves here. He is not eating much by mouth, though did eat several spoonfuls of his clear liquid diet this morning. That is all he's had all week. He is currently getting nourishment through his IV 24/7. His digestive system is still slow, but improved.

After all he has been through, Jayme has decided he does not want to endure more chemo in the near future, but has also stated "that is subject to change". And who could blame him. What a warrior he has been. I will definitely need help with him at home, so Dr Myron will refer us to KC Hospice for palliative care when he is discharged from the hospital. For those of you unfamiliar with those terms, there is a difference between palliative and hospice care...

Palliative care (from Latin palliare, to cloak) is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life.

But first things first. Our immediate goal is to get him through this current setback so he is more comfortable and able to go home. Wish I could take all these nurses with me, they are fabulous!

Since I will be his primary caregiver, I have taken a leave from my home health job. On the brightside, I'll get to hang out with Jayme lots. On the downside, he doesn't pay nearly as well!

The outpouring of support continues to astonish me. And please, never think I don't want to be bothered, cause I do!

Thanks for the love,

Kay

Another Detour

Severals hours after I posted my previous blog, Jayme started to experience more nausea, vomitting and abdominal pain. I ended up taking him to the Cancer Center Monday morning and following an exam and x-ray, they admitted him to Menorah. He had a scope earlier today and they have concluded part of his colon is "frozen". They do not know why, so they are loading him up with meds to get the colon moving. So far he is pretty out of it from mega doses of anti-nausea and pain meds. Poor guy can't catch a break!!!

I'll post again if and when they get him figured out. Hopefully tomorrow.

I've received so many texts and calls this week and it has meant a lot to me. Thanks for all the attention!

So far, so good

Third day out from chemo treatment #2 and things are improved since round #1. Jayme still has weird side effects like before, but nausea is more controlled. I think the new and improved anti-nausea regimen did the trick. One downside is he seems to be experiencing more abdominal pain, so will address that on Monday with the Cancer Center. He has lost several pounds, so he is trying to eat something every few hours, plus that will also help with the nausea.

I don't leave him for long periods, so Grace came home yesterday so I could work. Hopefully, he will be able to fend more for himself next week.

And who would have guessed the Royals would be 10 & 4. It has reaffirmed our belief that miracles really do happen!

Round Two

Following Jayme's few days in the hospital, he has felt better and the nausea has disappeared. But, since his first go around was a bit rough, he is a little nervous about his 2nd round of chemo scheduled for tomorrow morning. His oncologist and I had to do a little nudging, but Jayme feels this is his best shot to send this beast into remission and he promises to show up at the Cancer Center at 9:30 am tomorrow for treatment #2!

We met with Dr Myron this morning and he told us that this chemo regimen is the best out there for this kind of cancer and he has seen positive results in some of his patients. We understand that his cancer is not "curable", but Dr Myron is doing his best to keep it under control. This morning we discussed changing and adding anti-nausea medication during and after the treatment in an attempt to send him home feeling better than before.

Even though he fatigues easily, he still manages to work from home via his laptop, and is so grateful he is able to earn a paycheck. I am still working both jobs, but know I may need to cut back in the near future as this caregiving duty is exhausting!

Prayers and positive vibes continue to be welcome in our world.

Peace to all,

Kay

Hospital Visit

It's been a rough week for Jayme, but we think things will start to improve. He is currently in Shawnee Mission Medical Center and should be home sometime tomorrow. Last night he was having abdominal pain, nausea, and had not had much to eat or drink over the past several days. I took him to the ER and they admitted him. Turns out his white blood count was severely low, he was dehydrated and had a bowel obstruction. He has been given lots of IV fluids and antibiotics and is feeling better. His nausea has decreased and his appetite improved. They've had him in isolation due to the low white count, which is common in chemo patients. He tried to persuade the staff to let him recover at home since "the worst place to be if you don't want to get sick is the hospital"! He lost that argument.

He is not up to visitors, but loves the emails, texts and cards. He thanks everyone for their love and concern. And so do I.

Hanging in There

One down. Jayme had round one of chemo on Thursday. Had rough days Thursday and Friday, but started to feel a little better by Saturday. Experiencing some side effects, such as brief hand incoordination, tingling in hands and feet and constant borderline nausea. He has had to take more anti-nausea meds, so he is sleeping more than usual. He continues to take two chemo pills daily and we hope those side effects keep to a minimum. The good news is he was able to make it to his office today for several hours. I think it was hard for him, but so important to him that he is able to work.

Had a great weekend with all our kids, plus granddaughters Claire and Stella. Mostly just hung out watching basketball, fighting off our disbelief at the way the Jayhawk's season ended. So so sad. Caroline flew back to NY last night and Sam and Grace are back in Lawrence after a week of spring break in Gulf Shores, Alabama. Anna, Adam and the girls will drive back to Denver tomorrow and begin their preparations for their move th KC in July.

A huge thank you to my KC cousins, the Williams and Helfers, and soup nazi friend Jeff for the delicious food over the weekend. That was such a huge help with all the mouths we had to feed.

Enjoy the rest of the week and please keep those good vibes coming Jayme's way!

Getting Started

Jayme and I met with the nurse practitioner at the KC Cancer Center yesterday to find out the protocol for his chemo. We will see Dr Myron at 10:15 tomorrow and then Jayme will hang out for a few more hours and receive his first round. His "chemo cocktail" consists of 3 different kinds, two will be infused by IV tomorrow and the third is a pill taken daily for three weeks. He is scheduled to have chemo at the center every 3 weeks, up to 6-8 rounds. He will have labs drawn and see the oncologist weekly during this timetable.

He continues to amaze me with his focus on nutrition and exercise, and the most incredible attitude I have ever witnessed. He inspires me daily.

All the Findlay kids and grandkids will be here at some point this weekend and nothing makes us happier. Now if we could get a couple of Jayhawk victories, all would be good in the world!

Back in Shawnee

Finished our appointments late yesterday afternoon, so decided to head back home. Jayme is already back to work and I will be heading there soon, though I would much rather watch March Madness all day.

Met with an oncology nurse practitioner, the surgeon and Dr Alberts, a medical oncologist yesterday. They recommended the same treatment regimen as our KC oncologist. So, I have already shot off an email to Dr Myron to get Jayme started asap. They all believe that Jayme will respond well to the treatment since he had such a good result the first time around.

We are both so glad we made the trip. It helped to validate our own oncologist's recommendations and gave us hope as we begin the next phase.

Please keep those cares and prayers coming our amazing family and friends!

Arrived at destination

Many, many thanks for all the good wishes and prayers. And love all the blog comments, emails and texts. We are so blessed with all this love and support. Believe me, it is noticed and appreciated!

Arrived in Rochester around 8:30 this evening. Love our hotel, Townplace Suites by Marriott. We have a 1 bedroom suite with full kitchen. which is great for Jayme's 6 meals a day. And I am thrilled that I spotted a Trader Joe's on our way into town.

Ready to get started tomorrow and get this show on the road. We are to check in at the Mayo at 9 am in the morning and find out our agenda for the next few days. Hopefully, we will be home by Friday evening in time to watch the Jayhawks.

Rock Chalk!

Back to Mayo Clinic

We are heading to Rochester, MN the afternoon of Tuesday, March 15th. Jayme is scheduled for lab work and a CT scan on March 16th and will meet with an oncologist and Dr Nichols, his surgeon from two years ago, on the 17th. After the appts with the docs and their review of all his test results, including those from from the KC Cancer Center, they will let us know if we need to extend our stay for more tests. Hopefully, at that point, they will be able to head us in some direction as far as treatment options and a timetable. At least we have a plan to get this battle started.

Not Much New

Finally received a call from Dr Nichols at the Mayo Clinic this afternoon. I gave him an update on Jayme over the past month and he referred me to an oncologist up there. The oncologist's office called an hour later and I gave them a thorough history on Jayme over the past two years. I was told they will review his case and call me within four business days to schedule an appointment. You can bet they will get a call from me on Wednesday.

She also said the earliest we would probably get in is the end of next week or the following week. Not fast enough for us, but I've learned that being proactive and patient go hand in hand during this process.

Change of Plans

Jayme and I were set on heading down to MD Anderson in Houston, but have since changed our course. Dr Myron, his oncologist, called me Wednesday am and we discussed our options for treatment. He informed me that he had researched clinical trials locally and in Houston, but Jayme does not qualify for any at this time. I let him know we are not ready to jump into a standard treatment here until we get a 2nd opinion and strengthen our knowledge base about what is out there for Jayme. Dr Myron concurred and after further discussion, we decided to go back to the Mayo Clinic in Rochester, Minnesota. We need a place to start and we are both very comfortable starting at a place that we know.

Dr Myron made a call to the Mayo Clinic on Wednesday afternoon and left a message for Dr Nichols, Jayme's surgeon from two years ago. I found out today that he had been out of the country until last Monday night, so it may take a few more days to get things rolling. Hopefully we will have some news first of the week. Guess we just have to "hurry up and wait"!

Jayme is doing well, working full time and maintaining an amazing attitude. And, we are both overjoyed that Anna and Adam and granddaughters Claire and Stella are moving to KC in July! Anyone know of a couple of jobs for a couple of great teachers?

Enjoy the weekend.

Kay

Moving Forward

It is my opinion that Dr's offices take way too long in "getting back to you". So I called the KC Cancer Center today to see if the test results we were waiting for were in. Just so happened they said they received them this afternoon. Coincidence? I think not.

We were hoping the test showed that Jayme's original 2009 biopsy contained a gene called Her2. If it did, then he could be treated with an antibody drug called Herceptin along with the chemo. In theory, the cancer responds better to the duo treatment. Unfortunately, the test for the gene was negative, but they will repeat the test to be certain.

In the meantime, Jayme and I think it would be best to go to the MD Anderson Cancer Center in Houston for treatment options, hopefully find a clinical trial. I did a self referral for him on-line last night and we should hear from them within the next 24 hours. Hopefully, we can get an appointment in the next few weeks and get this thing going!

As always, we feel blessed to have such an awesome support system. Thanks for the emails, cards, calls, texts and comments. It does make a difference!

Another Fight to Fight

Although I found writing on this blog helpful when Jayme battled esophageal cancer in 2009, I was really hoping that I wouldn't have to get my "therapy" through blogging again.

No such luck.

Jayme has been diagnosed with a recurrence of cancer, this time it chose to settle in his right lung. In November he had a PET scan and it showed a very small area in the lung that concerned the oncologist. They did another scan on February 1st and it showed it had grown enough to biopsy, which he had last week. We met with Dr Myron today to find out the results. It is the same kind of cancer he had before, adenocarcinoma. The Cancer Center is performing another test, then we will discuss the best options for treatment, most likely chemo. At this point, surgery and radiation are not options. The oncologist is also looking into clinical trials here and elsewhere. So, we won't know much more for 7-10 days.

In the meantime, we ask for your prayers and positive vibes. Jayme has started this fight with an incredible and contagious positive attitude. He has already made me feel better. I think it is suppose to be the other way around!

I will post again as soon as I know our next course of action.

Peace and gratitude,

Kay

One Quick Hospital Visit

Jayme wanted to add a little excitement to Thanksgiving and landed in Menorah for the night. It appears he had a small bowel obstruction, experiencing severe abdominal pain, so we headed for the ER. They admitted him last night with the thought he would be there over the weekend. However, our friend and oncologist, Dr Myron, came in this morning and said the obstruction had resolved itself and he will be discharged to home today.

I know Jayme just gave a brief update, but here is my version. His recovery is moving along, though very slowly. Eating is still a big issue and takes up much of his day. He tries to eat 5-6 small meals a day, at all hours, sometimes at 2:00 in the morning! Following a meal, he needs to sit up for at least an hour and experiences some pain, nothing that his medication can't handle. We are grateful for percocet daily! He has lost a total of 60# since his diagnosis last January, but seems to be holding steady these last few months.

He tries to get to the office daily for a few hours, but his stamina is still low. He is able to work remotely from home for several hours at a time. Still not up to attending any KU football or basketball games, but, we have been out to dinner a few times with friends and family (he is a cheap dinner date!) and attended a couple plays.

So, all in all, life is good. He is cancer free and continues to be monitored by the Cancer Center every few months. We can truly count our blessings this time of year, and include our unbelievable family and freinds in those blessings!

Hope everyone had a great Thanksgiving.

Love to all,

Kay

More of the Same, yet that's never true

Kay has been encouraging me to post an update. All is going well. Recovery is progressing slowly but surely. We sat on the couch tonight and talked about when I was in ICU for 15 days, a lot of that time with virtually no white blood cell count. I don't remember 99% of it. I guess I was close to dying. It all seems like it was centuries ago. Kay said that a number of people would sit in the waiting room keeping her company but she wouldn't let them visit me in my room for fear of infections. Who does stuff like that? Sits in waiting rooms in the ICU comforting a friend? I am continually amazed at the support. It's clear to me that when you go through something like this, I mean you personally, you will have the same support. There are so many people that love us and care about us that we're just not aware of. I will be there for you. The number one lesson out of this year is that it makes a tremendous difference to the sick person to have others care. Why I had to become 56 year old to learn that, I've no idea. It meant everything to me, your love and support, and still means everything to me. Never ever doubt that your expressions of concern for an ailing comrade fall on deaf ears. It matters.

I've had a PET scan and a CT scan in the last 60 days, both show no cancer. Yea!

Thanks for following this blog in 2009, we've really enjoyed your interest and the comments.

Life is Good

Finally a quiet Saturday at home and time to get in a quick entry.

Jayme is doing well, still losing weight but has made significant progress the past month. The feeding tube is history and he is eating more frequently. Still small meals and handling some pain after meals, but overall improving. He is trying to decrease his pain meds and increase his daily exercise. Still doing 2-3 hours of computer work daily and hopes to make it to the office for a meeting next week.

He sees the oncologist monthly and will have another PET scan in October. But, so far there are no signs of recurrence. And, not a doubt in my mind he is now and will be cancer free down the road.

We continue to feel blessed daily by the continued concern and good wishes even this far removed from the treatment and surgery. And let me add that as a close observer of Jayme these past and present months, he continues to handle his ordeal with gratitude and humility.

We are looking forward to good times as empty nesters for the first time in 24 years! Not such a bad thing.

If anyone needs his email, it is gizmut@gmail.com.

Until next month....

Kay

July Update

Can't believe it has been six months since Jayme started treatment. But, on the other hand, it seems much longer.

He continues to progress at a slow and steady rate. Still has a feeding tube, but we hope to have it removed when we see Dr McElhinney, a gastroenterologist, on Monday. He is trying to increase his daily calorie intake, however it is a difficult process since part of his digestive system is missing! We know he will lose more weight until eating becomes more of a normal process, but that is all just part of the recovery.

Jayme had a PET scan on Wednesday and we met with the oncologist yesterday. The report was no current active cells! I was expecting that news, and I know Jayme was very relieved. He will have another PET scan in a few months. This kind of cancer has a higher recurrence rate than most others, so they keep a close eye on the patient for months and years down the road.

He is able to work on his computer 2-3 hours a day for his job. I'm also trying to work him into a few domestic chores around the house with a little success. He finished out patient physical therapy this week, just needs too continue more walking on his own. His stamina is still very low.

We know his recovery could take several more months. But, my goal is to have him next to me on the golf course by next spring. Who knows. I may be able to beat him now. I knew something positive would come out of this cancer fight!

More next month. Have a great rest of the summer!

Kay

Summer Update

Since I haven't written in so long, I don't know who is still checking the blog. I have heard from a few that still look every so often, so thought I would update.

All is going well with Jayme, slow, but progressing. He is going to out patient physical therapy twice a week, but should finish up this week or next. Then he and I will go to the YMCA 2-3 times a week to keep up his exercises. Maybe it'll help me get back into shape as well!

He is still on the feeding tube, but is eating more every week. Hopefully, he will be off the tube feedings within a month. He has maintained his weight over the past several weeks, holding steady in the mid 160's.

He manages his own medications and feedings, which has allowed me to get back to work part time. He also is preparing more of his own meals. He would much prefer I manage all his meals, but he handles kitchen duty pretty well. Grace and I even watched him clean the kitchen last night for the first time in six months. We were impressed!

Spent four fun days at the lake this past weekend. Jayme was very hesitant to be removed from his comfort zone, but he really enjoyed himself. He kept mostly to himself since we had a large crew with us, but peeked his head out every once in a while and seemed to enjoy witnessing all the activity.

Relay for Life was a huge success for everyone involved. Our team raised around $4500 and we had about 100 participants show up from our group. We were thrilled with the turnout and are already talking about next year. Jayme walked the entire track with other survivors and brought several of us to tears. It was quite an emotional and inspirational evening.

I will try to update once a month or so if we still have followers of the blog. Actually, it helps me keep track of all that has happened these past months.

Hot in KC this week. Stay cool.

Relay For Life

The following is an email I have just sent out. Since I don't have everyone's email who has followed this blog, I wanted to share with all of our loyal followers!

Hey Friends and Family,

Just wanted to pass along some info regarding Relay for Life. Their website appears to be a little confusing, so wanted to explain the process and provide a tentative schedule for those of you that are able and willing to walk with us at the event. Our team is called "A We Process."

What is Relay for Life?
Relay For Life is the American Cancer Society’s signature activity. It offers everyone in a community an opportunity to participate in the fight against cancer. Teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Relays are an overnight event.
Relay For Life is a life-changing event that brings together more than 3.5 million people to:
Celebrate the lives of those who have battled cancer. The strength of survivors inspires others to continue to fight.
Remember loved ones lost to the disease. At Relay, people who have walked alongside people battling cancer can grieve and find healing.
Fight Back. We Relay because we have been touched by cancer and desperately want to put an end to the disease.

When and Where?
It begins Friday, June 12th at 7:00 pm at Bonner Springs High School track and concludes Saturday, June 13th at 7:00 am. The cancer survivors walk (or in Jayme's case, ride) the first lap which is at 7:00 pm. If you are also a cancer survivor, Jayme would love some company with him for the first lap! If you want to be there for the beginning, it has been suggested that you arrive no later than 6:30-6:45 pm. Caregivers walk the second lap and then our team will join in and have at least one member on the track all night. Let me emphasize that you do not have to stay all night. We'd love to have you for whatever time you can share with us.

Other Activities
I have been told the event is a carnival-like atmosphere with activities and games. There is an area for kids as well. At 10:00 pm they light luminaries and honor those lost to cancer. If you want to purchase a luminary (I bought one to honor my mom), they are $5 and can be purchased when you arrive. Following the luminaries will be fireworks, provided by the sponsors and captain of our team, Chele and Danny Muder.

How Our Team Got Started
When the home health agency I work for, Blessed Trinity in Bonner Springs, found out about Jayme's cancer battle, they wanted to do something. They asked us if we would like to participate in Relay for Life and have a team in honor of Jayme's survival. I had never heard of it, but the more I heard, the more I liked. Not only is it about raising money to fight cancer, it is also about heightening people's awareness of this disease and the battle cancer victims fight on a daily basis. So thank you Chele, Sonya and Alice for getting this thing off the ground and organizing!

What You Need To Do To Participate
Just show up! You do not need to register on the website to walk. If you would like to donate, go to the following link, scroll down to my name, or any of the names and click on the name. Then click on "Donate" and follow the instructions.

http://main.acsevents.org/site/TR/RelayForLife/RFLFY09PL?pg=team&fr_id=17271&team_id=450140

So please walk with us, donate, or both!

T-shirts
We have ordered t-shirts that you can pre-order or buy at the event. They are $10 and the proceeds will all go to the American Cancer Society. They are black with white lettering and say "Survival is A We Process." We have preordered 60 shirts, so you may want to call or email me if you would like to order a shirt in advance. We'll order more if needed. You can pay the night of the event.

Jayme Update
He is doing well, but we know it will be a long and arduous recovery. He is still on tube feedings, but he is trying to eat more daily. He has lost around 40#, but has actually put on a few pounds this week. Pain is still present, but less than it was a few weeks ago. Nausea is still a culprit, so he is experimenting with medication and food to try to conquer that issue. His endurance is still slowing him down, but he is now walking without a device and going up and down stairs several times a day. It wears him out to read or get on his laptop for more than 20 minutes, so he spends alot of time watching TV and napping. Now some wouldn't complain about that life!

He is still receiving in home physical therapy, and hopefully, will be able to tolerate out patient therapy by next week. He is getting out with me or friends on occasion and I hope that will continue and become more frequent. He is more independent overall which has allowed me to get back to work on a part-time basis.

Please feel free to call or email me with any questions!

-- Kay Findlay
Reece & Nichols Roberts
913-709-7160 (cell)
913-299-1600 (office)

Some Final Thoughts

So thrilled that Jayme was up to blogging yesterday. After all these months of communicating on the blog, I'm sure I'll have a little withdrawal. It's been my own personal therapy.

Thought I would give you an update of Jayme's current status. He is walking with a walker, but starting to move away from it more each day. He has home health physical therapy 3 times a week and will begin out-patient therapy in a few weeks. He has lost a total 30# but has maintained over the past several weeks. He has been told he will likely lose 15-20% more of his current body weight. The biggest challenge I see is getting him to eat regular foods again. He is trying to eat a little throughout the day, but it is a struggle. The pain is much better, still taking pain meds, but less than last week. His mind is clearer, voice stronger and more smiling observed!

He thinks all the out-pouring of support in "a phenomenon." He is so overwhelmed and humbled. It's an emotional roller coaster for him at times.

As soon as he is able, we look so forward to spending more time with family and friends. We would love to see many of you on June 12th at Relay For Life if your schedule allows. If anyone needs to contact me, my email is kay.findlay@gmail.com

I'm sure there will be more blog entries down the road as Jayme fully recovers, but the good new is, hopefully, there won't be much to report!

Thanks you for sharing "A We Process" with us.

Peace to all.

Kay

Cancer Free!

Well I guess all things must come to an end, whether good or bad. Kay and I went to the oncologist yesterday and we were told I am currently free and clear of cancer.

The first of January, when we first found out I had cancer, I asked just to be given a chance to beat it. The following week the oncologist said your case is "treatable for a cure". I got my chance.

I want to thank everyone from the bottom of my heart for their love, good wishes and prayers. I really felt your presence. I want to thank Kay for everything.

The phase we're in now is "recovering from surgery". So basically we are going to cut down on blog entries.

Mission accomplished. God bless.

Jayme

We're Baaack!

Great to be home. Jayme is tucked snugly in his hospital bed upstairs, Grace is out and about with her friends and I am hangin out with my dog. Life is good.

The drive home was a breeze, made several brief stops for Jayme to walk and stretch. Thanks to our thoughtful family and friends who left goodies for us upon our return. Also, our yard has never looked better. More thanks to pass around! And while I'm handing out thank yous, I want to send out the biggest thank you to my brother, Dave. He has helped out with hotel rooms and flights for my kids, as well as providing moral and emotional support day in and day out. Plus, he got me tickets to the Final Four last year. Boy, I am really indebted!

Jayme has a follow-up appointment with the oncologist on Tuesday. Hopefully, those visits will dwindle down and he can get back to concentrating on his soon-to-be full recovery. I'm hopeful he will feel up to visitors soon. I will keep you posted.

We both feel so fortunate we were able to go to the Mayo Clinic for surgery. I am glad to repeat myself when I say that it is an awesome place. But, the next time I spend 12 nights in a hotel room, it won't be in Minnesota. I'm thinking Hawaii!

Coming Home

Those are a couple of sweet words!

Jayme had his last chest tube and drain removed today. His pain seems better and his mobility has improved since yesterday. Had a little difficulty tolerating his dinner this evening, but other than that, he is OK to come home tomorrow.

Thanks to all of you who have donated or signed up for Relay For Life, which is scheduled for Friday, June 12th at Bonner Springs High School. Jayme and I look forward to sharing the evening (and/or night) with as many of our family and friends that are able to come. If you would like to donate, join a team or make your own team, here is the link. Once we get back to KC, this will be our project over the next month.

http://main.acsevents.org/site/TR?pg=team&fr_id=17271&team_id=450140

I will share more info as I receive it.

And yes, I am a dweeb. I named our dog Reesing after the KU quarterback. Anyone surprised? My kids were briefly appalled!

Good and Busy Day

Funny how the smallest things are so significant these days. Jayme ate five bites of mashed potatoes and three bites of chocolate pudding this afternoon. And I was cheering! He commented that that was the first time since early January that food has gone down without too much difficulty. You can imagine his fearfulness since he has had several episodes of choking since last fall. They have progressed him from a clear liquid to a soft diet. They thought he will tolerate soft foods better. And they were right.

They also removed chest tube #2, IV fluids and catheter today. Tomorrow they will take out his last chest tube and drain. The only thing left will be his feeding tube, which he will have for another 4-6 weeks, depending on caloric intake.

We both had educational sessions from the dietician and respiratory therapist. Lots of new information to study. He will need to eat small and frequent meals and lay off the sugar. As a matter of fact, the dietician suggests everyone should eat like that. Maybe I'll give it a try.

The plan is to leave Rochester Friday by late morning. I want to pick him up and head home instead of staying in a hotel Friday night. It will be a longer trek since I have been instructed to stop every 1-1 1/2 hours and have him get out of the car and walk and stretch. Believe me, that will not be an easy task.

I miss my family, friends and Reesing (the dog) and look forward to getting back to Kansas. And excited to go out and watch those Royals!

Seeing Progress

Today was a much better day. The swallow test results were positive so they were able to remove the nasal tube, and, he actually took some sips of broth and juice this evening. They decreased his nausea meds so he didn't sleep as much today and he was able to participate in Rehab. They also removed one of his chest tubes which was a painful procedure, but the pain soon dissipated. I don't know about Jayme, but I feel much better!

I spoke to Dr Nichols and they feel he should be able to go home on Friday if things continue to progress.

Jayme thanks everyone for the cards and gorgeous flowers.

Not Much New

Jayme had a barium swallow test and liver ultrasound this morning, but we won't know the results until tomorrow. He is still sleeping too much, in my opinion, so they are working on changing his medications so he isn't so groggy during the day. He hasn't been able to participate in Pulmonary Rehab the past few days. He still has his catheter, three chest tubes and his nasal tube. Everything is happening just a little too slow for me. It looks like we may be here longer than I anticipated, so I am a bit frustrated.

Caroline leaves tomorrow and I miss her already. She has made the past week tolerable!

I'll update tomorrow as soon as I have something new to report.

More of the Same

Spent most of the day trying to keep Jayme's nausea and pain in check. We both mentioned to the nurse that he took Ativan at home and that seemed to work well. The Dr agreed and wrote the order. The nausea is much less, but a side effect is drowsiness. Lots of sleeping this afternoon, even during the Royal's game. (Since they played the Twins, I got to watch all 3 games!) The pain pump is gone so they are giving him pain meds through his feeding tube every four hours, which seems to be working OK.

Tomorrow could be a big breakthrough day. He will have a swallow test with barium to make sure there are no leaks at the esophagus/intestine surgery site. They have also ordered a liver ultrasound due to an elevated blood test, though they are not alarmed, it's just precautionary. Hopefully, he will have the nasal tube and a chest tube removed and he can start taking liquids by mouth. Difficult to predict what will happen if the nausea persists.

Thanks to all the elves who have beautified our yard this weekend. I am told we have some new lovely flowers and the beds are mulched. Thanks friends!

Not Great, But Better

Jayme had a bit more nausea today, but felt better by the evening. His pain is more contolled with round the clock meds. I expect him to feel better tomorrow. As Dr Nichols said today, "This is a horserace and he came out of the gate fast. Now he is just slowing down a little bit." All bloodwork and other tests look good, so he is on the right track to progress daily from here on out.

Grace flew home this afternoon and we miss her already. It's great to have Caroline with me a few more days.

"Things Can Turn on a Dime"

That is a direct quote from Jayme this afternoon. Things were going so well for him until this afternoon. He had a violent bout of nausea, so that has set him back just a bit. They removed his epidurals for pain this morning, so the episode caused him to also experience more pain at his incision sites. However, the physicians are on top of all his symptoms and have a plan in place. Dr Nichols has been in twice today and his associates made two other visits. They were going to remove some of his "tubes" today, but will hold off until tomorrow. By this evening, Jayme was much more comfortable.

I'm confident he will get back on track tomorrow. He is still getting all his walks in during the day and following his breathing protocol to keep his lungs clear.

I'll update again tomorrow on Jayme's progress. He'll have a much better day!

He's Baaack!

Well almost. He's back to giving unsolicited financial advice to the kids, back to asking about booking lake weekends this summer and inquiring about my dad's fishing success this week in the Ozarks. He's back to complaining that I talk too fast and sometimes too much. It has been an unbelievable and most welcomed transformation from pre to post-surgery Jayme!

Dr Nichols and another entourage stopped in this morning. Jayme thanked him for saving his life. Being the gentleman and scholar he is, Dr Nichols emphasized what a team effort it has been and acknowledged everyone in the room that has been a part of Jayme's case. He reported that the pathology report showed that most of the tumor was dead and they only found microscopic bits of cancer in the mass that was removed. As far as they can tell, he is free of cancer.

Jayme will begin tube feedings today. He hasn't been given any nutrition since the surgery, just IV fluids. They will do a swallow test on Monday to make sure there is no leakage where they joined the esophagus and small intestine. If all goes well, he will start on liquids (broth and jello) thereafter. Once he starts tolerating food by mouth, many of the tubes will be removed.

Great to have Caroline here and we await Grace's arrival this evening. Caroline will drive up to Minneapolis to pick her up following a brief stop at the Mall of America. Well, maybe "brief" is not accurate.

Doing Well

Jayme is worn out this morning after an hour of Pulmonary Rehab, but it's a good worn out. The therapist's goal is to advance him daily so he can tolerate 30 min of aerobic exercise after he is home for awhile. Jayme's goal is to not get pneumonia, so he has been very compliant in all breathing and other exercises. We know it will be a long recovery, but at least we know there will be a recovery!

Since this is a surgery day for Dr Nichols, he came into see Jayme at 6:30 am. Needless to say, I missed that doctor visit. He also had a pain management team visit later in the morning. They have done a marvelous job of monitoring and controlling his pain. If you could see his incisions, you would be amazed how little pain he is experiencing.

He is still hooked up to lots of tubes, but the oxygen and heart monitors have been discontinued. He loves his nurse, Shannon. She is onery and so is he. It makes for a beautiful relationship!

Caroline arrives later this afternoon and Grace is flying in tomorrow for a few days. I'm anxious for both of them to see their dad in the recovery mode.

Up and Around

I arrived in Jayme's room this morning around 8:30. He was sitting up in bed with bright eyes and his pain pump button secure in his hand! It is now 11:00 and he has already been up in a chair and walked with the help of two nurses. Dr Nichols came in with an entourage of 10 and explained the surgery to Jayme. Then came a physical therapist, respiratory therapist, anethesiologist and dietician. Jayme has two nurses and they only have 2 patients so he gets plenty of attention. I can't stress enough how impressed we are with the entire Mayo organization.

I told Jayme that even with all the tubes, cables and IV's, he is better today than he has been in weeks, maybe months. The cancer is gone and it is downhill from here.

I am so full of gratitude today to my family, friends, and all the medical personnel who have touched his life. A We Process indeed.

Clock Struck Twelve

It's after midnight, but seeing Jayme tonight was well worth the wait. Although he won't remember a thing tomorrow, he was pretty cognizant of what was going on around him. He was awake and asked me a few questions. He even remembered I was checking into a different hotel today.

Three nurses were getting him set up in his room. One of them broke the rules and let me observe. Wow. The equipment he is hooked to is unbelievable. He has an oxygen mask, three chest tubes, nasal tube, catheter, IV's, two epidurals for pain (one for each incision), leg pumps for circulation, feeding tube, heart and blood pressure monitor, etc. I was told they will get him up to walk 3-4 times tomorrow. I want to witness how they manage that with all the tubes attached to his body.

Dr Nichols explained that he could not use the stomach to rebuild the esophagus due to inflammation and the size of the tumor. By the time he removed the tumor as well as some inflammed areas and lymph nodes, there wasn't enough of the stomach left so he used the small intestine, successfully may I add. After listening to him go into great detail following the surgery, it just emphasizes how fortunate we are to have this particular surgeon operate on Jayme. The man is a master at what he does, and has a bedside manner to match.

Going to get some sleep now, but will update again tomorrow.

Thanks over and over again for everything all of you have done. Please keep doing whatever it is you are doing cause it's working!

Surgery is finished

Caroline here, writing this entry for my mom as she is at the hospital without her laptop.

Dr. Nichols just came in and spoke with her. My dad is out of surgery and all went well. He should be back in his room by 11pm so my mom will be able to see him, which she is anxiously awaiting.

She will update more later.

Still in Surgery

The nurse communicators have been doing a great job of updating me, but they don't have lots of details since they aren't in the operating room. The last update was at 6:20 and I was told that they had just closed up the abdomen and were getting ready to start on the esophagus. Dr Nichols doesn't think he will finish until at least 10:00 tonight. I have no idea why the surgery is taking almost 10 hours and won't know until I talk to the Dr after he is through. The good news is they say Jayme is doing fine and is stable.

I will update again tonight after I speak with the Dr.

I am back at my hotel which is across the street from the hospital. I can literally leave my room and be in the hospital in 3 minutes. So nice and convenient. Thanks oldest brother!

It Has Begun

Surgery began at 12:23 this afternoon. Turns out he is Dr Nichols' 2nd surgery of the day. I have been assigned a nurse communicator and she will update me every few hours. They brought me to Jayme's hospital room and gave me the option to stay here as long as I like. Not so bad, it's a spacious and bright private room. I have been getting some work done on my laptop and have already done lots of texting and answering and making phone calls. I will blog again when he is out of surgery and have more info.

For those interested, here is Jayme's address for the next ten days or so.

Saint Mary's Hospital
1216 Second Street SW
Rochester, MN 55902
James Findlay FR 5C-144

Surgery is Scheduled

We arrived in Rochester about an hour ago. I called the number they gave me to find out what time Jayme is to check in for surgery prep. He is to be at the hospital at 8:00 am. I assume his surgery will be around 9:30 or so. I will blog as soon as I can tomorrow with more details.

This road trip was a little longer than normal. Lots of rain and I had to rest my tired eyes for about 30 minutes. But, we made it here safely and are more than ready to start phase two of Jayme's journey to being cancer free. We are both confident that Dr Nichols will do a superb job of starting him on that road tomorrow.

Keep those positive thoughts headed this way!

Good Weekend Visit

Hope you like the new picture I added. He's kinda cute with a shaved head. In fact, they kinda look alike!

We so enjoyed our weekend visit from Anna and little Claire. Jayme is a man of few words these days, but did find Claire "quite entertaining". We miss them already, and look forward to a few of their summer trips to KC from Denver.

Jayme is holding his own. He has had a few bouts of nausea the past 3-4 days, so we are trying to adjust his anti-nausea medication so he isn't too drowsy. If were up to him, he would just sleep until the surgery on Monday. Really can't blame him. Up until the nausea started, he had been gaining strength and walking independently, but I am making him use a walker due to his recent drowsiness. Sometimes he is not the best judge of what he can and cannot do safely.

I recently realized that I have never explained the surgery Jayme will have next week. Without being too graphic I will do my best. It is called an esophagectomy. They will first make an incision in his abdomen and, at that time, decide if they can use the stomach to rebuild the esophagus. If they can't use the stomach, they will use the small intestine. Usually the 3rd option is the colon, but in Jayme's case they can't use it due to the recent diagnosis of colitis. The Dr assures us he can do it with the stomach or intestine. Then they make an incision on his side between his ribs and remove most of his esophagus. They then "stretch" the stomach or intestine up and resect it with the remainder of the esophagus.

He will continue with the feeding tube for a week after surgery, then progress to liquids by mouth. If all goes well, he will then start on a soft diet and may be able to discontinue the tube feedings within a month. He should be able to eat what he wants, just small and frequent meals. However, knowing Jayme, he will be making a diet change in an attempt to keep cancer away forever!

Tonight I was telling Jayme about all the recent gestures of goodwill, the emails, cards and blog comments (he even received one from Costa Rica), the donations and interest for Relay For Life, the help with the lawn, the wonderful and delicious food, the "get Kay out of the house" lunch and dinners, etc. He has not been able to witness it all himself recently, but I am doing my best to share with him all the unbelievable kindness of our friends and family. It is quite overwhelming. The human spirit lives on in this crazy world and we are more grateful than ever.

Blog Make-over

Hope you like the new look of the blog. I've always been one that likes change, so don't be surprised if it changes again sooner than later.

Arrived home from Rochester late Monday evening. A long drive, and it seems to get longer each time we make the trip. Even though we were disappointed that the surgery was postponed for two weeks, I think we both feel that it will benefit Jayme in the long run. And, as my oldest brother keeps telling me, all that is important is the end result. He is so right.

It is good to be home for a breather. I figured out that if they did the surgery this Friday as we anticipated, we would have been gone at least three weeks. Too long to be away from home, the dog and Grace.

Jayme is gaining a little strength every day, still has poor endurance but is walking short distances without the walker. Our goal is for him to walk into the hospital on the 27th without assistance. That would be progress.

Anna and 10 month old grandbaby Claire are coming in this weekend for a visit, so we are excited to spend time with them.

More time to heal

As my mom packs, I (Caroline) am dictating the following post:

Jayme met with the gastroenterologist this morning and it was determined he will have surgery on Monday, April 27. Turns out he does not have irritable bowel disease but has a mild case of colitis that is most likely a side effect from the chemo/radiation and may resolve itself over time. Dr. Nichols' schedule is not conducive to surgery until the end of April and he feels it would be beneficial for Jayme to gain more strength in the next two weeks.

We got a late check-out from our home away from home, the Rochester Hampton Inn, and are on our way back to KC now.

Looking forward to getting back home for a bit. Thanks for all the well-wishes.

Stuck in Rochester

I'm sure Jayme won't mind if I share the fact that he has Irritable Bowel Disease and must be seen by a GI doc before he can have surgery. He had a contrast CT scan of the colon this morning and we tried to get in to see a doctor this afternoon, but no such luck. We waited in the waiting room for a few hours, but the holiday weekend prevented us from getting in. We have an appointment on Monday at 10:15. Frustrating you ask? Very much so, but nothing to do but wait until we find out the next step on Monday. The strange thing is, Jayme is asymptomatic, so this took us by complete surprise.

Dr Nichols insists they have the best specialists at the Mayo for this type of disease, so he wants us to handle it all here. Hopefully, they can start Jayme on medication and he can have the surgery next Friday. The surgeon has him penciled in for the 17th. We shall see.

So glad Caroline is here until Monday. She has been so helpful and great company.

Happy Easter and I'll update early next week.

Guest entry

Hello all from daughter #2, Caroline. Just wanted to give a little update from a my perspective.

I arrived in Minneapolis from Philadelphia yesterday afternoon and went straight to the Mayo Clinic to find my parents anxiously awaiting the test results, which they had been doing for the previous two hours. After the nurse finally called them in, I was honored and a little nervous to tag along and meet with Dr. Nichols to hear the long-awaited plan for surgery.

This entire experience has shown me now more than ever that my parents are two of the strongest people I know. My dad has endured more physical obstacles than one can ever imagine, yet he continues to push forward and is determined to get better and be cancer-free. And my mom is the emotional rock for all of us. She puts everything into caring for my dad, constantly educates herself on his condition, speaks for him when he cannot speak for himself, maintains the continual flow of nutrients into his feeding tube and still manages to update the rest of us with this genius blog.

Since my dad's diagnosis on January 5, I have known that we are all going through this together--our entire family and large circle of friends. But my parents have really been in this as a 2-person team. It all came to the forefront when in the doctor's office hearing test results read. My dad started asking the doctor's assistant questions and not once did he say "I" or "me." It was always "we" and "us." My mom may not be physically sick but she is experiencing this nasty cancer right there with him. It is in fact a "we process."

To repeat what my mom always says, thank you so much for the love and support sent our way. It is humbling to hear of all the people who have reached out and helped my parents with anything and everything. We love you all!!

Bummer...Surgery is postponed!

We had an appointment with Dr Nichols at 2:30 this afternoon and it didn't quite go according to plan. After a two hour wait, we finally got in to see him. It seems that the colonoscopy Jayme had yesterday showed some "patchy abnormality" and the biopsies need more in-depth analysis from the pathologist. They don't think it is cancer, it could be inflammation, but the surgeon will probably need part of the colon to rebuild the esophagus, so it is vital that the colon is healthy. The reason for the long wait was that all the tests were late getting to the surgeon. We didn't get out of his office until after 6:15.

We are totally disappointed, but Dr Nichols was so intricate in the way he explained the whole process. He showed and read us Jayme's different test results and talked about other cases that have come to him that weren't done correctly. He does at least one or two of these surgeries weekly, so we know we are in great hands. More than ever do we get that he knows what he is doing, and that is why we traveled to Rochester. Still bummed, but understand the reasons for the delay.

We will talk to Dr Nichols tomorrow to see what, if any, tests Jayme will need. He may need to consult with a gastroenterologist and figure out what happens next. So I suppose we will be here for another day or so, but who knows? Surgery will not take place until at least next Wednesday or Friday at the earliest.

Caroline arrived this afternoon, but we got in touch with Anna while on her way to the Denver airport. Sam and Grace were to come Friday. All travel plans are in a holding pattern. In fact, everything is in a holding pattern.

More later as we receive more info.

Long Day

Jayme is worn out and I am right behind him. The two tests plus blood work today took over 7 hours and he was awake for most of it. Now the goal is to get some nutrition in him and allow him plenty of rest for Thursday. Only thing on the agenda tomorrow is a meeting with the surgeon, so we should be able to have him ready for surgery.

I will make another entry on Thursday after he gets out of surgery. Keep those good thoughts and prayers coming!


If interested, here are two links for the "Relay For Life" event I spoke of in the previous entry.

Team Page...
http://main.acsevents.org/site/TR?pg=team&fr_id=17271&team_id=450140

My Personal Page...
http://main.acsevents.org/site/TR/RelayForLife/RFLFY09PL?px=10376624&pg=personal&fr_id=17271

Safe and Sound

We are settled into the Hampton Inn. Not such a bad place to spend a few weeks. Rooms are all updated, free breakfast daily and soup every evening, fridge in room and complementary internet access. Trip was uneventful, just long. Could be because we just did the drive 10 days ago!

Jayme just completed his pre-colonoscopy prep. I'm sure he'll be awake for a few more hours, getting his exercise while making frequent bathroom trips. Tomorrow morning he will have a colonoscopy and endoscopy plus blood work, meet with the surgeon on Wednesday and surgery Thursday. Dr Nichols does two surgeries a day. Needless to say, I have requested the first surgery time slot.

Two friends/co-workers of mine, Sonya and Chele, are organizing an American Cancer Society "Relay For Life" team to honor Jayme's battle with this atrocious disease. This week I will put a link on the blog for those of you that want to join the cause, whether by participating in the event with us on June 12th and/or by making a donation. I personally have never attended an event like this, but have heard it is an extraordinary and unforgettable experience. I will also be emailing info to many of you whose addresses I have.

If you need or want to contact me, my email is kay.findlay@gmail.com.

As always, the concern and love we have both experienced from all of you is so appreciated. Gratitude fills our hearts and we thank you.

Getting Packed

My good friend Julie gets worried when the blogs are infrequent, so thought I should update to ease her mind. All is fine, just preparing for a long journey and stay in Rochester. I have lists of things I need to do and take, so my weekend will be full of organizing, errands and packing. You'd be amazed how much "stuff" we have to take with us when a cancer patient on a feeding tube is involved. Thanks goodness we still have a minivan!

Jayme is doing OK. Still uses a walker, but gaining a little strength daily. He did spend a few hours on Thursday and Friday at the Cancer Center getting IV fluids. I want to make sure he stays hydrated, at least until we arrive at the Mayo Clinic. The waiting process until surgery can be agonizing, so we want to do all we can to stay on track for the April 9th surgery date.

All four Findlay kids will be in Rochester at some point. Anna and Caroline will arrive Wednesday, so they will be with me during the surgery. Sam and Grace fly in Friday evening. Anna will head back to Colorado on Saturday and the other three will leave on Monday. Jennifer, one of my college roomies, is coming out the following week for a few days.

Once I am settled in the Hampton Inn, I will try to blog more often, especially the days following surgery.

Looking Forward

Been awhile since I've blogged but Kay has done a great job. Thanks for the cards, calls, emails, blog comments. They're great to read.

Looking forward, 11 days to go until surgery if we stay on course. They'll be a 10 day hospital stay, then back to KC if all goes well.

Dr Nichols is a master at what he does. You can tell by the way he wraps himself around every detail of the surgery. It was a real treat to listen to the various possibilities we could run into. It made me feel more secure.

I remain grateful for the things I do have, the people, the home, the periods of serenity. Sometimes I feel like I'm watching the second hand on the clock. But if I can stay focused that this is just another day and it will come to an end and I'm one day closer to surgery, then I can settle down and do whatever is next.